tag:blogger.com,1999:blog-81300202946890674662024-03-21T17:33:57.040-07:00 Let Me FlyMy thoughts and feelings on different life experience's and being a Mom living with Cystic Fibrosis.Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-8130020294689067466.post-88784462762426571322014-09-27T09:49:00.001-07:002014-09-27T09:50:50.480-07:00Q&A about my Lung Transplant and CF<div data-reactid=".f.1:3:1:$comment361827300650242_361832597316379:0.0.$right.0.$left">
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<span data-reactid=".f.1:3:1:$comment361827300650242_361832597316379:0.0.$right.0.$left.0.0.$author">Through my transplant journey page and my personal page I have received questions over the last 20 days since transplant. I would like to answer to the best of my ability, but some answers are not cut and dry because transplants vary person to person. I will give the best answer I possibly can. Let's begin!</span></div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.$author">Q: Krista Peterson</span><span data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:0"> -</span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Will cf hurt these lungs as well? </span></span></span></div>
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<span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361831577316481:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: CF will NOT hurt these lungs as well. Because CF is genetic and these lungs are not genetically attached to my DNA they will not be affected by the defect. </span></span></span></div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361883407311298:0.0.$right.0.$left.0.0.$author">Q: Nicole Gorsuch-</span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361883407311298:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361883407311298:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361883407311298:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"> Can you describe how your first deep breath felt with your new lungs after you woke up? <span aria-hidden="true" class="emoticon_text">:)</span><span class="emoticon emoticon_smile" title=":)"></span></span></span></span><span data-reactid=".f.1:3:1:$comment361827300650242_361883407311298:0.0.$right.0.$left.0.0.4"></span></div>
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A: It felt AMAZING! It was painful to take that full deep breath because of the operation. It was a hurt so good kind of feeling. It brought tears to my eyes. It felt like I could blow up a balloon in my lungs in one blow. </div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.$author">Q: Lynn Porter-</span><span data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Do you know the age you would have to be for a lung transplant and can they do them for children with Cystic Fibrosis?</span></span></span><span data-reactid=".f.1:3:1:$comment361827300650242_361891113977194:0.0.$right.0.$left.0.0.4"></span></div>
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A: Lung transplants are not based on age but on function or I should say lack of function in the lungs. They start to look at people for transplants when lung function numbers drop into the 30% ranges. Yes they do lung transplants on children with CF that need them.</div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.$author">Q: Mary Church Olson-</span><span data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Will your lungs last a life time? Praying they will!</span></span></span></div>
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<span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361866010646371:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: There's no way to know for sure if they will last a life time. I have faith they will though. </span></span></span></div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.$author">Q: Ginny Hutson Miller-</span><span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">How long were you on the list ?</span></span></span><span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.0.4"></span></div>
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A: I was on the list for 8 1/2 months.</div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.3.$metadata:0:$action:0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.$author">Q: Juanita Custer-</span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.1:0"> D</span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">oes a transplant 'cure' cf?? What are the chances of needing another transplant?? Having been through this, would you even do it again?? Last one.. Do you know how much you inspire people?? <span aria-hidden="true" class="emoticon_text">;)</span><span class="emoticon emoticon_wink" title=";)"></span></span></span></span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.0.4"></span></span></div>
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<span data-reactid=".f.1:3:1:$comment361827300650242_361841337315505:0.0.$right.0.$left.0.3.$metadata:0:$action:0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204981904496237:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411742841" title="Friday, September 26, 2014 at 10:47am">A: Transplant does not cure CF. Transplant is a last effort to save the life of CF'ers in lung failure. The chances of needing another transplant vary from person to person. I would also have qualify again for another if need be as well, the process starts all over again. At this point I can say if need be I would do it again. I really don't know how much I inspire people, that's honestly a hard thing for me to wrap my head around.</abbr></span></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.$author">Q: Heather Renae Schafer </span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:0">- </span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Do u have to be on anti rejection meds now for the rest of ur life??</span></span></span></div>
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<span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: Yes, I will be on anti-rejection medications for the rest of my life</span></span></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982151022400:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411746077" title="Friday, September 26, 2014 at 11:41am"></abbr></span> </div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.$author">Q: Deb Bendon -</span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Will you get an opportunity to meet the donor's family?</span></span></span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.0.4"></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982224904247:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411747021" title="Friday, September 26, 2014 at 11:57am">A: I will have the opportunity to write my donor's family and they have the option to write to me as well. I plan on writing them and where the connection will go from there is up to them. I absolutely hope I have the chance to meet them some day. </abbr></span></div>
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Q: <span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.$author">Lorena Holliday Justice -</span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">How has this changed your view on life? Any big plans for the future??</span></span></span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.0.4"></span></div>
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<div class="UFIImageBlockContent _42ef clearfix" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0">
<div data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left">
<div class="UFICommentContentBlock" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0">
<div class="fsm fwn fcg UFICommentActions" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.3">
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982545072251:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411750467" title="Friday, September 26, 2014 at 12:54pm">A: I don't think it's changed my view on life to much, I believe my outlook on life has always been pretty good. I don't have big plans for the future at this point. Right now I'm enjoying the little things that were taken from me slowly by my lung failure, such as showering, dressing, getting the mail, and those simple things without getting short of breath. As I heal and am able to do things I believe it will be the small things that matter the most to Colton as well, like riding a bike, jumping on his trampoline and swimming with him. My personal goals for the future would be to focus more on my photography and maybe go to school for that. </abbr></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.$author">Q: Megan Jean -</span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">What was it like when you came to the first time and realized you had new lungs? </span></span></span><br />
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<span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: Painful and emotional. I couldn't believe that it actually happen for me. It's very surreal still. I'm so grateful and happy to be given this second chance at life at the same time incredibly sad for the family that lost their loved one. They are truly my hero for giving me the ultimate gift in what must be the worst time of their life. </span></span></span></div>
<div class="fsm fwn fcg UFICommentActions" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.3">
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982774357983:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411752942" title="Friday, September 26, 2014 at 1:35pm"></abbr></span> </div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.$author">Q: Karrie Hutchins -</span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Does this mean longer life? I ask because in that video I think the kid said age 36.</span></span></span><span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.0.4"></span></div>
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<div class="UFICommentContentBlock" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0">
<div class="fsm fwn fcg UFICommentActions" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3">
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm">A: Yes that is the hope that it will give me life for much longer than 36, I have no doubt it will give me more than I had left the way I was, I was failing fast. But there are no guarantees with transplants. So there is no way to know for sure. </abbr></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"></abbr></span> </div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm">Q: <span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.$author">Taylor Eames -</span><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">How does it feel to take a deep breath now?</span></span></span></abbr></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: It feels so great and amazing! In fact I'm still not use to it and have to remind myself that I can actually take a deep breath and have it feel good and not send me into a coughing fit.</span></span></span></abbr></span></div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span></abbr></span> </div>
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<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.$author">Q: Greg Howell -</span><span data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Biggest difference you can feel?</span></span></span></span></span></span></abbr></span></div>
<div class="fsm fwn fcg UFICommentActions" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3">
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".f.1:3:1:$comment361955577304081_361958647303774:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".23.1:3:1:$comment361955577304081_361987457300893:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: Not coughing and getting short of breath all the time and feeling my lungs expand more than I ever remember feeling. </span></span></span></span></span></span></abbr></span><br />
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"></abbr></span><br />
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm">Q: <span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.$author">Deb Bendon -</span><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">How much pain were you in right after the surgery? How long before you were walking after? Could you have visitors and how soon?</span></span></span></abbr></span><br />
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: They gave me an epidural spinal block for pain right after surgery so it was tolerable, the pain didn't come really bad until they tried to wean me off the epidural with an oral medication that didn't work. Once I found the right drug that worked for me the pain is under control and I'm rarely more than at a discomfort. I walked 3 steps from the bed to the chair the day after surgery but didn't take an actual walk until day 3. Yes I could have visitors and did have some immediately. </span></span></span></abbr></span><br />
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span></abbr></span><br />
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><abbr class="livetimestamp" data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0.$timestamp-message.0" data-shorten="true" data-utime="1411755388" title="Friday, September 26, 2014 at 2:16pm"><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span></abbr></span><div class="UFICommentContent" data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0">
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.$author">Q: Heather And Trevor Wood -</span><span data-ft="{"tn":"K"}" data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"> Does this mean you no longer have cf? Will you still be on all those meds? What can you do now that you couldn't before? Just a few things I have been wondering!</span></span></span></span></span></span></span></div>
<span data-reactid=".2l.1:3:1:$comment10204981846414785_10204982837999574:0.0.$right.0.$left.0.3.$metadata:0"><span data-ft="{"tn":"K"}" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".4w.1:3:1:$comment10204983897506061_10204987723801716:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">
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<span data-ft="{"tn":"K"}" data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".y2.1:3:1:$comment10204881113616528_10204882899461173:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: Since CF is a genetic disease I still do have CF in the rest of my body, it just can no longer hurt my lungs. I will still take a lot of medications, but the major difference is in the time consuming vest therapy and nebulizers that I will no longer have to do for my lungs. The main things that I can do now that I couldn't before are physical activities (that is after I heal completely) but even now I can walk, dress, shower and all the little things without getting winded anymore. </span></span></span></div>
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<span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.$author">Q: Heather Renae Schafer -</span><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Do u feel like a totally healthy normal breathing person now???</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: Not quite yet but I feel amazing compared to what I did on a day to day basis before hand. I'm confident as I completely heal that feeling will be even more so. </span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.$author">Q: Taylor Eames -</span><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:0"> </span><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Jamie, just curious, but what were your PFT's like before the transplant? </span></span></span></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">A: The day I was admitted to the hospital on August 26th with my old lungs my PFT's were 25%. 18 days post transplant they were 66%, this is a great number and as my lungs stretch and expand to fit more, the more I use them my lung function will continue to increase over the next 9 months to a year when I will most likely peak. There's no way to know what that peak will be but it could even reach 100% and beyond. </span></span></span></span></span></span></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span></span></span></span></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".x2.1:3:1:$comment10204943760702666_10204944064630264:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$comment361220624044243_361222250710747:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><span data-ft="{"tn":"K"}" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".3d.1:3:1:$replies361220624044243_361222250710747:0.1:2:$comment361220624044243_361224267377212:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I think I answered all questions I had been asked. Please don't hesitate to ask more if you think of them. I'm willing to share my story to bring awareness to CF as always and organ donation. Thanks again and always for the continued love support and prayers along the way. </span></span></span></span></span></span></span></span></span><br />
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Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com1tag:blogger.com,1999:blog-8130020294689067466.post-8935015882408260652014-03-21T11:57:00.000-07:002014-03-21T11:57:12.111-07:00I'm only Human...For those who are friends with me on facebook know I was listed for transplant on January 20th. I had been in the evaluation process since June of last year and with my lung function dropping to an all time low of 22% my doctors thought it was the right time to list me, so I finished up the testing while I was in the hospital for 18 days and was listed the day I was discharged. When your listed for transplant your given a allocation score which determines where you are put on the list, the higher the score the more urgency for transplant. Currently my score is 33 putting me lower on the list. As my health changes that score can be changed to fit the status of my health whether it gets better or worse. The doctors felt it was time to list me because over the past year with every hospitalization I have not been able to bounce back so to speak, and my lung function hasn't been going back up like it use to. Also because I am still semi healthy which makes me a good candidate. I passed every test on every other part of my body that they run! Being listed for transplant doesn't change my day to day life with CF at all, I still have to do everything to stay as healthy as possible as I always have. <br />
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So many don't know how to take this news of being listed for transplant. Is it good or bad? There is really only one answer that I feel fits. It's bad that my health is at the point that I need to be listed, but it's good that I have that option available to me. It's not where I wish I was in my journey with CF, I don't think anyone ever wishes to be here. But non the less this is where I am at in my journey now. <br />
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My journey with CF has never been easy so to speak, but it has never been harder than the last few months. I mean that's pretty normal considering it's a progressive disease, but that doesn't make it easier. You can only prevent and prepare so much for the hell that comes with lung failure. In the past it has been fairly easy for me to adjust to me new levels of function as they dropped, because it was usually a slower process and my body acclimated to it far before I even realized it had happened. That is not the case in my most recent decrease in function and new normal for me. To be completely honest I'm not adjusting well at all. The truth is I will most likely get much worse and suffer much more before being transplanted, if I am lucky enough to get that call. The truth is I could die waiting as so many do. That's not a new revelation in my story, because in fact without the opportunity to be listed and given a chance, my life would likely be taken because of CF, I've always known that. And to all those who say you never know when your going to die or why, yes that's true, but I have always been more likely to die from CF than anything else. Anyways death is another story. What I'm not dealing well with is the worsening in my days, my struggle to eat, and on days when I'm really bad the liberty of being able to bathe myself being striped. When getting dressed to go out is more of a chore than it's worth to go out, when I can't stand to wear a bra because it constricts my chest to much and makes it hard to breathe. There's not one thing to pin point that makes it harder, its a bunch of little things that add up. These are the things you take for granted the ability to do on your own until that ability is gone. It's a hard pill to swallow. It seems I have more bad days than good more recently which is hard and wearing on my usual positive attitude. I think the hardest part is having a great day and then feeling like death the next day. Also not being able to rely on my body when I need to make plans for future events, always being afraid I'm going to have to cancel because I just can't muster up the energy or feel like I'm drowning in my own lungs. Plus this winter has sucked the life out of me! (yes I'm going to blame my problems on the worst winter in Michigan history, sue me!) I can't do nothing because it's been so fricken cold, I can't even breath when I go outside, let alone stay warm, or do anything! So I'm hopeful for a better spring and summer. <br />
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As hard it is, it's okay. I've always been the type who needs to feel my emotions and work through them on my own, I don't want medication to deal, I have been given that option, and some need that I totally understand that, but not me. I need to feel the lows to truly appreciate the highs! I need to break down once in a while, or a lot for a while, and I need that to be okay. After all I'm only Human. <br />
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Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com1tag:blogger.com,1999:blog-8130020294689067466.post-3537352349336205002013-12-17T12:44:00.000-08:002013-12-17T12:44:16.789-08:00CF Hurts...CF hurts. That is the one thing I wish people knew or could understand. It hurts physically, emotionally, and spiritually.<br />
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Let me start with the physical. I ache every single day. Imagine coughing so hard your whole body tenses and hurts, so hard that you pull muscles and even crack ribs. So hard you get an instant headache. So hard you are afraid to eat for fear of only throwing it up later. So hard you can't control you bladder and pee yourself or even worse poop yourself because the meds that are suppose to control that aren't working right either. And now you have to clean yourself and whatever else you may have messed on all while trying to catch your breath from the coughing fit that caused it all. Imagine every single breath you take hurting, hurting so much you take shorter breaths which only make matters worse and you have to use O2 because your stats drop and your heart rate climbs. Now imagine doing this several times a day. It all might not happen everytime I have a coughing fit, but it hurts everytime I cough. I also have arthritis and osteopenia caused from CF, which causes more pains else where. I take ibprophen twice a day to help with the pain, and when I pull muscles and it gets real bad I have to take muscle relaxers and stronger pain meds.<br />
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Let's move on to the emotional. I break down more than I'd like to admit. Those coughing episodes I just spoke of are exhausting. I'm a mom and wife, although lately I'm not very good at either. I sleep about 12 hours a day if not more. This is because of 2 reasons 1. My body physically requires more sleep to breath than most. 2. On top of that I also have narcolepsy which causes excessive sleepiness. I do have a medication to help me stay awake more often, but that causes weight loss I cannot afford to lose. Not to mention imagine having energy to do things but your body failing you at every attempt to do things, you your stuck with all this energy to do nothing or fight your body doing so. So I don't take the med to keep me awake. Colton hates how much I sleep. So I'm left with the guilt of sleeping away my time with Colton that I know is limited because he is growing up so fast. Then there's the hurt of not having enough energy or air to go outside with him and play in the snow, make snowmen, go sledding. So I watch out the window and cry while he does these things with his dad or my mom. I'm also riddled with guilt of not being a good housewife. Brad works everyday at an unthankful job to provide a good life for us, but then he comes home to do the work I should be doing. Cooking, cleaning, laundry, all the things I use to be able to do. He does these things without complaint and completely forgiving to me for not being able to all while helping me to try and stay healthy. He calls everyday to check on me and worries about me relentlessly. I'm ashamed to say I'm not always nice to him. I'm terrible at being empathic to him or anyone really that doesn't have a grave disease when they are sick. I just think must be nice to only have a cold, to wake up and all that's wrong is your back or head hurts, must be nice to know after a while you'll be better and back to your life. I don't have that luxury as many don't. So here I am feeling bad for not feeling bad! Well sometimes I don't feel bad about not feeling bad. But for Brad I do, because I'm his wife and he should be able to complain to me without feeling like I'm just gonna tell him to suck it up, which I have said before. I break down the most when I'm sick, when I'm sick I get scared, when I get scared I cry, yell, and have been known to throw and break stuff. I'm scared I'm going to die, I'm not scared of dying, I'm scared of what my death will do to my family and friends, most importantly Brad and Colton. So I fight, when I feel like giving in when this disease is ravaging my body I fight, when I think I can't do another treatment I fight and do it anyways, when I'm covered in my own body fluids and want to scream, I say fuck you CF and I fight. I am almost always emotional drained from the battle that goes on between my body, my heart, and my disease.<br />
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Last but certainly not least is my spiritual well being. I was raised on Prayers, I am living proof to the power of prayer. I believe in God and I believe Jesus will come back for us all one day. My spirituality has not always been strong and I go through times of wavering in my faith. I think it's natural with all I go through to have those seeds of doubt sometimes. Then Colton will do something so profound I can't doubt Gods plan for me and my family. It all wears on me like a heavy cloak I can't take off, like I was cursed with this burden and I must carry it to my death. I don't know His plan for my life and more often than I'd like to admit I ask why, that answer has not come yet. Or maybe it has and I missed it. Either way I just continue to pray for myself, that I may be worthy of His kingdom when my time comes.<br />
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I'm sorry if this disappoints readers who are use to my usual positive attitude about life and CF. This is the truth of my existence right now and I will always be honest about that. I'm having bad days but it's not a bad life, and when it gets better I'm sure I'll have a more positive look on it again. It just gets hard sometimes to always keep that smile when the truth is all I want to do is cry.Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-64083489143846790572013-07-16T17:53:00.000-07:002013-07-16T17:53:08.998-07:00Transplant EvaluationAs I wrote about in a blog back in September I have been seeing the transplant doctor at my hospital in Grand Rapids, Spectrum health. They have been following my progression, and for a while it was really unchanged. After January of this year it did change a little bit. I have not bounced back from a couple CF exacerbations like I typically do. Leaving my lung numbers to stay in the lower 30's, and also having more symptomatic signs of lung failure. After a couple months of still waiting to see what would happen, if I might bounce back up some, if it was just taking longer than usual, I decided that although I was feeling better, it still wasn't my baseline. Dr. Gergis had told me that if that was the case it might be best to start the process of being evaluated to be listed for a double lung transplant. There are a few more things other than just my lung function and symptoms that are leading us in this direction, a few being my weight (or lack there of), my increasing resistances to antibiotics, and increasing need for hospitalizations. So next week I will start the process of evaluation. This includes to start with meeting the whole team including surgeons, nurse coordinators, and pharmacy staff. A financial run down, where they go over my insurance and what will be covered. Then there is clinical tests such as PFT's, 6 minute walk, blood gases, right heart cath, echocardiogram, and psych. evaluation. After they gather all this information from my body and me the doctors compile and review it to decide whether I am indeed a good candidate to be listed for lung transplant or not. If I am and I decide its the direction I want to go and am ready they can list me. If I was listed the way my health is now I would likely have a low allocation score, or could even be on the inactive list. The allocation score is the system they use for lung transplants, the higher your score, the sicker you are, and higher on the list you are. The benefit of me being listed even though I am not sick enough to need lungs just yet, and would be listed with a high score or as inactive, simply put, being ahead of the game. If I suddenly became very ill and needed lungs it's much easier to increase my allocation score moving me up the list, rather than while I am sicker going through the process of being listed then or even in an emergency setting. I could also refuse lungs at anytime if<br />
they were offered and I didn't feel I was ready. Whether I will be listed I don't know, am I willing to take that route need be. Yes. There are also other things that will be taking care of before I will be listed, those things are terms that I have personally. Those being my family being ready for it also. Colton is very anxious about me even seeing the transplant doctor, so me being evaluated has been a touchy subject for him. He knows I can die from CF and he knows I could die with a transplant and that rightfully scares him. I have spoke with the nurse coordinator at clinic and they are working on getting me some resources for him, this is new to them, having a patient that is young enough (because they are a new transplant facility) to have a school aged child that needs the support also. Thankful they can reach out to the Helen DeVos Children's Hospital for those resources for Colton. In the mean time I still fight CF like hell to keep my own lungs! As much as they suck and hate me and I hate them I'd still like to keep them as long as possible.Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com2tag:blogger.com,1999:blog-8130020294689067466.post-64901126392177125802013-06-10T21:49:00.001-07:002013-06-10T21:49:36.602-07:00My opinion on Sarah Murnaghan.I don't know if you've seen or are following the story of Sarah Murnaghan, 10 year old cystic fibrosis sufferer who is dying from CF. She has been on the pediatric list (12-) for lung transplantation for 18 months and recently her parents waged a media war and petitioned to get her also listed on the adult list (12+). They achieved what they wanted and she was placed by court order on the adult list. You can read media reports on it <a href="http://www.dailymail.co.uk/news/article-2334957/Sarah-Murnaghan-parents-10-year-old-cystic-fibrosis-sufferer-need-lung-donation-plead-public-help-save-daughter.html">here</a>, <a href="http://www.huffingtonpost.com/2013/06/05/sarah-murnaghan-lung-transplant-_n_3392862.html">here</a>, and <a href="http://www.npr.org/2013/06/08/189861416/not-fighting-for-just-sarah-rating-transplant-priorities">here</a> for full details. For weeks now I have seen her story shared all over my friends facebook pages, I read all the articles that I seen posted and followed her story the best I could. Now let me say a couple things before I state my opinion on this topic. I do not pretend to be an expert on the subject, I know what I have read through the media about her story and about lung transplants through <a href="http://www.unos.org/services/index.php?topic=research">UNOS</a>, <a href="http://www.giftoflifemichigan.org/">Gift of Life</a>, and other peoples experiences with it. Opinions are always going to vary and especially on hot topic issues like organ donations. In fact my Mom and I disagree on this case. Putting this into words has been a challenge for me over the last couple days, so bare with me if my thoughts seem jumbled or not put together.<br />
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I completely disagree with Sarah being placed on the 12+ list based only on a court order by a judge who has no expertise in the field, instead of a panel of doctors and experts on organ/lung transplantation. There are a few reasons I believe this and let me just start with the one that to me seems so obvious, her life is no more valuable than the person that might not get lungs now because she was put above them. No one persons life is more valuable than another. Now I know people are moved above others all the time on transplant lists, but that's based on medical necessity, not because they got court orders to be there. I can understand how that might sound harsh. Are children more precious? Absolutely! I am a mother so I can speak from a parents heart. If it was me I would want everything done to save my child also, but I could not do so knowing that it could come at another child's life. Which in her case it very well might. Could you look another mother in the eye and say my child is more worthy than yours? I could not. She was on the top of the pediatric list where she rightly belonged, and although they speak of it as the adult list it is 12 and older. So there are deserving children that are just 2 years older than her on that list as well, not just adults. The rules for the difference in pediatric and adult were set in place for clinical reasons by many doctors and experts in the field to be as fair as possible for everyone. There could be more complicated issues with a child being transplanted to young, than with an adult and that's why the rules stand as they do. Another issue I have with this is they will most likely have to modify adult lungs to fit her, which this is practiced in adult to adult transplants too, but I can't imagine to the extent it would have to be to fit a 10 year old. Why shouldn't a person who is just as sick but is a better fit get those lungs? If there was no one to fit them by all means try to make them fit for her or a smaller person. I believe the person that has the best predicted outcome based on need should get them first. Adults generally have better predicted outcomes, so should we start saying children get precedents simply because their children and it's to sad to watch them die? Another perspective is that even though adults are grown they are someone's child too, for a parent I don't think it hurts any less to watch you 20-30 year old child die any more than it would if they were 10. Some of those adults listed may also be parents to children themselves, do their children deserve to be parentless at the expense of another child's life. I just really don't like the way they went about getting what they wanted, it seemed very temper-tantrum-ish to me, Had this decision been made by experienced people from the UNOS/OPTN than I might have a different opinion. After review today they have decided that the rules will stand the way there are, but will start to review some children under 12 on a case by case basis, you can read about that decision <a href="http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1598">here</a>. There is a couple articles that also explain things from a different perspective that I thought stated pretty much my thoughts on it as well you can read those <a href="http://www.oregonlive.com/today/index.ssf/2013/06/cystic_fibrosis_case_puts_orga.html">here</a> and <a href="http://blogs.phillymag.com/the_philly_post/2013/06/10/sarah-murnaghan-lungs/">here</a>.<br />
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It's not fair, CF never seems to be, nor is it fair to need to be on a transplant list. I truly wish nothing but the best for Sarah and her family, have and will continue to Pray for them. If you want to do something to help 1. Become an <a href="http://www.giftoflifemichigan.org/">organ donor</a> 2. Donate to <a href="http://www.cff.org/Great_Strides/JamiePurchase7170">CF research</a> so we can find a cure so there's not a need for us to have lung transplants!<br />
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Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com1tag:blogger.com,1999:blog-8130020294689067466.post-81789733119946286342013-05-12T18:52:00.002-07:002013-05-12T18:52:53.193-07:00Knowing when it's time to head to the hospital.I have talked in other blog post about certain signs to me that I may need to go in for a clean out. Being tired more, not being able to keep up with household chores, getting short of breathe faster with things that don't normally make me short of breathe are some. Then there's startng to need O2 more than just at night, Brad telling me I am moaning at night, I apparently do this more frequently when I am close to a clean out. Now there is a new factor for me, Colton has started to get clues he picks up on as well that I might not notice, and tells me "Mom I think it's time for a clean out!" in his matter of fact way. Seems theres never a "good" time to go in, I mean to avoid it at all cost is the goal, but that just doesn't happen in my world. So when I start to think about it and when it would be a good time to go in, sometimes there's a time period where nothing major is going on that I can just get put away and get better for a few weeks. But most the time CF's timing is really crappy! <br />
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You get where I'm going with this don't you?!? It's that time all the symptoms are there, and worst of all I've had to wear my O2 almost all day every day since Friday. So I'm calling clinic tomorrow morning, they will probably offer oral anti-biotics, I will decline because 9 times out of 10 they don't work and I don't have time for that! I usually just tell them I need Iv's and they say "okay you know your body better than us" they set it up and I'm off and running for my 3 week clean out. So last time I was in in January it was horrible timing because Janet was in the worst battle fighting cancer. This time around it sucks too! My Great Strides for CF walk is Sunday May 19th! When I get a clean out I do at least 2 weeks in patient, that leaves me in the hospital the day of my walk one week from today, so my plan of action may change up a bit this time. I may go in and get started and then finish up on home Iv's, or I may go in and stay my 2 weeks and take a LOA (leave of absence) for those few hours that day than go back and finish up my stay. Either way I just can't see myself missing my walk, I am the chairperson for this walk, I do almost all the work for it, and am pretty much the only one that knows how everything gets done that day! Would it go on and be as successful without me there? Yes I'm sure it would, but i just can't stand the thought of missing it, it's my baby! Either way it will be fine and life will go on, but as always I have to do what's best for my health.Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com2tag:blogger.com,1999:blog-8130020294689067466.post-36467639512516640802013-05-11T19:56:00.001-07:002013-05-11T19:56:23.535-07:00Mothers Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxFros2ScoBkzqvxNHQCNXeUgLMf4JUGngIhzvhP1rouFPOYDqzQoajYxo4s9l8iPVpZB-qoJS_APwEKgCvPbdzp1lnAGH3ezR3h2bhxoFtRC7FJuRtbS0LnWX18LXtT6tvCKzdE_a5l0/s1600/100_2306.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxFros2ScoBkzqvxNHQCNXeUgLMf4JUGngIhzvhP1rouFPOYDqzQoajYxo4s9l8iPVpZB-qoJS_APwEKgCvPbdzp1lnAGH3ezR3h2bhxoFtRC7FJuRtbS0LnWX18LXtT6tvCKzdE_a5l0/s320/100_2306.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom and I on the night of a lifetime! At P!NK's Truth About Love Tour concert. <br />
One of thee best nights of my life!</td></tr>
</tbody></table>
Tomorrow is Mothers Day, the day we celebrate our Mom's for all they are to us and do for us, also the day I get celebrated for being a Mom. <br />
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Sadly I only get to celebrate my mother in law in memory, I sure do miss her. I swear I heard her come to my house the other day. The way she always did, opened the door and calling out "Hello" I would stop my therapy (because she always stopped by around the same time of day I did my treatments), say "Yeah I'm home" she usually had something to drop off, to tell me, or just nothing really. I could have swore I heard her last week, even stopped my therapy before I realized, that wasn't possible, that she was gone. Or trying to buy a watermelon at the grocery store, there I stand with wet eyes, people probable thought I was crazy. But the thing is she always brought me watermelon, and it was always really juicy, sweet, and delicious! I don't know how to pick out a watermelon, I had to have my Mom do it. It's the small moments like that that hit the hardest. I miss her and I miss those moments. She was no doubt one of thee best Mom's I knew and was just as great of a mother in law. Happy Mothers Day Janet! I bet it's a great celebration where you are. <br />
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Having lost Janet and worse yet watching Brad lose his Mom has given me an even deeper appreciation for my Mom. I have always appreciated my Mom, but when we lost Janet I almost felt guilty because I still have the luxury of having my Mom, unlike Brad. Aside from Colton and Brad my Mom is my world. She is ALWAYS there for me regardless of what I may need. She is more than my Mom she is my best friend. I can't imagine what it must have been like to raise me. Being giving a gift of a little girl and then being told she wouldn't live through elementary school, all while raising my older brother. That must have been heart wrenching. I only know what it's like on this side of CF, although I know what it's like to be a mother, I don't know what it's like to be the mother of a CF child. I can only imagine, because seeing Colton sick when he was born and almost losing him, and then when he had to have his appendix removed, and surgery for his broken arm. But once Colton got through those things we got to move on with our life, he got healthy again and gets to be a healthy child. But my Mom and my Dad had to work so hard to keep me healthy everyday, had to watch me get sick, and spend many nights in the hospital. My dad was the only one that worked, they had one vehicle. My mom's journal has writings in it about not being able to get to the hospital to see me for 3 days! Can you imagine leaving your baby in the hospital in the hands of the nurses and doctors for 3 days without seeing her?! My Mom had to, they didn't let you stay at the hospitals with your children back then, she had my brother to take care of, and at one point there was a snow storm, and the one truck they had, the lights had broke. I can only imagine what trying times it must have been for them. But when I was healthy and home they took care of me, but they also let me be a kid and raised me as if I was going to live to be old and grey. No special treatment, no pity parties. I had my big brother to play with and when we weren't fighting we were best buds, we'd take turns playing Cars and Barbies, he'd play Barbies with me for a bit and then we'd play cars and trucks out on the sand hill (I think we played cars and trucks more though)! I can't imagine what it was like for him to have to deal with having a sick sister. Later in life we still play with cars and like to go to the sand hills and play in trucks, only now it's the big kid toys! My Mom was always so good at playing dolls and Barbies with me. I remember when I was in about 1st grade and I came home from school and she had all my Barbies (I had A LOT) sitting up around the dinning room table, with all there hair combed and dressed nice. I loved that. She would do the same with my Cabbage Patch Dolls too (I had A LOT of those too) she'd let me take pictures of them all nice. She taught me to blow a bubble with my gum. I had a great childhood. My parents didn't have a lot and we only got toys or gifts on holidays and birthdays (and not like today for EVERY holiday only Christmas, Birthdays and Easter!). But when those days came they were the best ever! I remember when I got in school my Mom went back to work at nights, so Dad took care of us at night and Mom during the day if we weren't in school. I also remembered I hated it, I wanted my Mom!! I was a Daddy's girl too though maybe I'll write about him on Fathers Day. She could be a mama bear too and came to my defense on more than one occasion. One I remember well, I was in the hospital and only about 10, we shared rooms with others at the time. I was sharing a room with a baby, the mother had left me, her other daughter who was maybe 8 and the baby in the room alone to go to the cafeteria. While she was gone her older daughter was going to take the baby out of the crib, I thought she shouldn't do that so I called the nurse. When the mom got back to the room she pretty much attacked me verbally and told me I had no right to tell her daughter what to do. My parents had left not long before all this happen, and they lived about 1 1/2 hour away from the hospital, no cell phones back then, so I had to wait until they got home and called me to tell my Mom what happen, she was not happy and after speaking with the nurse decided that because it was late they would deal with it in the morning. Well when my Mom got there she laid into that other mom like nobodies business, giving her the 3rd degree for verbally attacking me for trying to keep her baby (who was hooked up to all kinds of stuff) safe. I never felt so loved and protected in my life! We promptly moved to a new room. You don't mess with my Mom and you sure as heck don't mess with her kids. My parents always told us, if something happens and you tell us and it's the truth you'll have our full support, and they did! If we lied though and they found out after having trying to defend us, we were in hot water! I guess I'm rambling now, but I truly had thee best Mom growing up. Even through my teen years we stayed very close and she gave me some great advice that stuck with me and made me the wife and Mom I am. She doesn't give herself nearly enough credit sometimes. In the words of P!NK "She's <a href="mailto:F*#@%^g">F*#@%^g</a> Perfect, to me" There's only one thing that's better than having her for my Mom, and that's having her be Colton's Grandma! <br />
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Happy Mothers Day Mom! I love you more than you could ever know.<br />
<br />
Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-16887683058730375532013-04-29T19:42:00.000-07:002013-04-29T19:42:00.267-07:00Loss of a loved one.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRdwQsZ_o9tXY-SOuJM3kjerYOrWMEaGJTRv5rDVfCprhVtSocbfITK2w8woQ4kYJTYVyoeD007guZZhwPSVmTX7cnGq8_0dU94LksvWb5FLsgVOOEhDpKH4_hKGX0Db593haj88sq3ig/s1600/IMG_0999.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRdwQsZ_o9tXY-SOuJM3kjerYOrWMEaGJTRv5rDVfCprhVtSocbfITK2w8woQ4kYJTYVyoeD007guZZhwPSVmTX7cnGq8_0dU94LksvWb5FLsgVOOEhDpKH4_hKGX0Db593haj88sq3ig/s320/IMG_0999.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Janet Ann Purchase <br />
RIP 12/21/51-4/21/13</td></tr>
</tbody></table>
I had recently wrote a blog about the battle my mother in law was having with cancer. Sadly she passed away last Sunday April 21st. I had felt in my heart as she was slowing slipping away that I wanted to give a eulogy in her honor at her memorial service. So I'm going to share that here on my blog. <br />
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<span style="line-height: 115%;"><span style="font-family: Calibri;">Janet was my
mother in law; I am married to her son Brad. Often times we hear of stories of
mothers in law being over barring, or never approving of their daughter in
laws, with the logic that no woman is good enough for their son. That was not
the type of relationship I had with Janet. If you don’t know about Brad and I’s
courtship, it was short. We met, married and had Colton within one year! I’m
not so sure Janet and Jerry were always on board with how fast things happen
with us, but they always supported us and they welcomed me to the family with
love and support. Janet was a care giver by nature, she wanted to take care of
you, whatever it was anyone may need she wanted to take care of it. She has
been there for Brad and I countless times to take care of Colton while I was
sick or in the hospital. Often calling me and asking if she could take Colton
to do things with him, like taking him to Anderson’s Orchard to pick apples, or
to Easter egg hunts, she just loved spending time with him and us.<span style="mso-spacerun: yes;"> </span>You didn't have to know her long to know that
she would welcome anyone with open arms, love, and food! Everyone knew her in
town, whether by her bright blonde hair or for the one who talked a lot that
you couldn’t get away from in the grocery store! If you wanted to know
something she most likely knew about it, and she knew and told you stuff you
didn’t want to or care to know about as well! Someone in the family told me she
had the nickname “the newspaper”! She knew things before anyone else and she
loved to talk. She was a socializer, she could meet a person she never knew
before and know their life story within minutes, and they too would know hers!
I often say she gave her gift of gab to Colton, because he is the exact same
way, and in her last days she claimed that he was worse than her! You could
often find yourself on the phone with Janet not being able to get off, that was
just who she was, a talker. Food was often her way into homes and hearts, she
was an amazing cook! She was always making food for one occasion or another.
She would often offer to make something, and then complain about having to do
it, but we all knew she loved doing it! <span style="mso-spacerun: yes;"> </span>She would often make us dinner and bring it
down, or we would go to dinner at their place. I’m not sure I could have made
it through some events without her bringing food for me. When Brad and I first
married and were starting out she would bring us groceries’ on a regular basis
and bought Colton clothes too. That leads me to another part of Janet,
shopping! She loved to shop! Grocery shop, clothes shop, yard and garage sale
shop it didn’t matter she could shop anywhere! Boy did she love a sale; she
would buy something she didn’t even need simple because it was on sale! She
would often say “well someone can use it!” But I loved that about her because
we were about the same size usually so she would get me stuff too! She has a
stock pile of groceries in the basement which is also very useful when we would
run out of stuff since we live only about 2 miles away. We could and would
often call and ask her if she had an ingredient we needed and she usually would
and if she didn’t, she would volunteer to go get it and bring it to us. Janet
loved to fish and hunt, and often out fished and out hunted the boys! Her and
Jerry spent hours and days on the lakes fishing, often times coming home with
enough fish to feed a small army. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">It seems I
could tell you a lot about Janet, but in reality I only knew her 1/3 of my
life, a short 10 years. In comparison to a lot in this room that have known her
their whole life or most of it, that is a small amount of time. It was,
although plenty enough time to love her and appreciate all she has done for my
family and I. So today I am going to celebrate her life and all that she was to
me, finding Peace in the fact that she has gone Home. Her mortal life may be
over, but she is only just beginning her eternal life in Heaven. I will rejoice
in the fact that when I join her again, she will be there waiting with the same
welcoming, open arms, and love she showed me here on earth. <o:p></o:p></span></span></div>
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I love you Janet, will miss you dearly, and may you fly high as an angel to watch over us. Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com3tag:blogger.com,1999:blog-8130020294689067466.post-79884742445220923872013-01-30T22:35:00.001-08:002013-01-30T23:07:14.018-08:00What I do when I'm in the hospital<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52Fcp-EiZ5GCyskBM-_8bMD4q_dWpMjUtWJTITbQEiG9KTBAMaatuBKyeQyFI4HLNWW8aW8384UO6aFEG6_3nMQz2HIK6wN5BGbo3EwOexMyrb519K1GtuaJQVyuJfi3crqRs5oQX8Tg/s1600/IMG_1105.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52Fcp-EiZ5GCyskBM-_8bMD4q_dWpMjUtWJTITbQEiG9KTBAMaatuBKyeQyFI4HLNWW8aW8384UO6aFEG6_3nMQz2HIK6wN5BGbo3EwOexMyrb519K1GtuaJQVyuJfi3crqRs5oQX8Tg/s320/IMG_1105.JPG" width="320" /></a></div>
What do you do while your in the hospital so long? That's a question I get a lot. So I thought I would try to put a little list together of what I have done during this 2 week hospital stay. <br />
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<ul>
<li>1,680 Minutes of vest treatment</li>
<li>84 Aerosol medications</li>
<li>42 meals, 56 snacks</li>
<li>Slept approximately 150 hours</li>
<li>56 Doses of Iv meds</li>
<li>Taken 644 pills</li>
<li>7 showers </li>
<li>Read 2 books and 4 magazine's</li>
<li>Watched 10 movies and about 114 hours of TV</li>
<li>Wrote 6 blogs</li>
<li>Spent hours on facebook and pinterest</li>
<li>Had visits from Aunt Charlene, Uncle Ken, Lori, Mom, Dad, Colton, Brandon, Sarah, Katie, Megan, Alex, Paul, and Jamie</li>
<li>42 Vital checks</li>
<li>Walked 180 minutes</li>
</ul>
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So although it seems I have all kinds of time on my hands, I am actually doing a lot of sleeping, eating, and treatment. Do I get bored, absolutely, especially the last few days when I feel so much better. But to feel so much better it is worth it. Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-15217239702825854272013-01-28T17:21:00.004-08:002013-01-28T17:21:30.508-08:00Inspirational, who me?! <div class="separator" style="clear: both; text-align: center;">
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I get told rather regularly that I'm inspirational. The definition I found for the word inspirational is:<br />
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<a href="http://www.learnersdictionary.com/search/inspiration"><span class="sn">1 a</span> [<span class="sgram">noncount</span>] <strong>:</strong> something that makes someone want to do something or that gives someone an idea about what to do or create <strong>:</strong> a force or influence that inspires someone</a>. <br />
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I find this very flattering and a true compliment. I also find it hard to understand why they would say that I am. I once asked a friend that had told me that, why she thought that, her response made sense and helped me understand why someone might feel that way.<br />
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Me: I'm not sure how I have been an inspiration to you though, but thanks!<br />
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Her: Really?!? There are so many things that could be limiting you, Jamie. But you refuse to be limited. You are a fighter. I've read some of your blogs and they leave me in tears. You have a daily battle in your life. Sometimes I allow things in life to get me down, and then I'll think of what other people have to deal with and realize it could be worse. Statistic wise, I don't think you were supposed to have a baby, but look at you now! You have a precious little boy! How can that not be inspirational?<br />
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Another friend tells me sometimes "At night when I go home and I'm too tired to even want to brush my teeth, I think about you and how you have to do an hour of treatments before even thinking about brushing your teeth and going to bed!"<br />
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So I thought about it and realized, that yes I do have things that could limit and do limit me. I am a stay at home Mom and wife (to an amazingly supportive husband), I have every single responsibilities that a "normal", "healthy" mom and wife has. I also have CF which requires my constant care as well, with hours of treatments, and tons of pills, and yes I have to do hours worth of treatments before thinking about brushing my teeth and going to bed (I don't floss regularly...okay never really, and I go to the dentist and the hygienist is all like you really need to floss, and I'm thinking lady <em>ain't nobody got time for that</em>!). The thing is to me I'm just a "normal" woman, mom and wife. I have been doing CF my whole life, I don't know what it's like to not have CF, not do treatments, and not take pills. This is my normal. So when someone tells me I'm an inspiration, I think, really? I'm just living my life like a regular person. This I think comes from my parents teaching me growing up that no matter how bad you have it there is always someone worse off, fighting a harder battle. That's how I live my life, always have. Another thing I was told and taught was, yeah you may have been dealt a bad hand, but that don't mean you can't play the game, you play the hand your dealt. I'm thankful for the life I have CF included. Does CF get me down sometimes, yes, it's hard sometimes, but there's so much more to my life than CF. If CF ran my life and mind all the time I would drown in it. One of my favorite quotes is "Love your life, love the life you live" I love life and I love living my life! Life is so precious and taking any bit of it that I have for granted would be ignorant. <br />
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My blogs, facebook posts, and videos are never intended to make people cry or feel sorry for me. I write and make videos to educate others about CF and what it is, and is like living with it. If in my efforts to raise money and awareness for CF, it has brought some to appreciate life a little more and be thankful for what they have or don't have, than yes I guess I can accept that I might be an inspiration. <br />
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<br />Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-83609779275324678802013-01-21T12:32:00.001-08:002013-01-21T12:32:29.577-08:00My Married familyWhen some speak of their in laws it isn't always because they love them or even like them, you hear horror stories of the dreaded mother in law. My experience with my in laws couldn't be farther from that, I absolutely love mine! <br />
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I have always liked my in laws, Janet and Jerry, since Brad and I got together. I was always afraid of what they thought of me, meeting their son, getting married, and having a baby all within a year! They must have thought we were crazy!! I think I remember Jerry asking Brad at one point if that was what he really wanted to do, was marry me, and we were told by mine and his parents don't just get married because your gonna have a baby! But we knew we were soul mates and would spend the rest of our lives together. <br />
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I know now that they absolutely love me! Like most couples starting out Brad and I didn't have a lot of extra money. Janet would always be bringing over groceries for us, or would give us a little extra cash to go out to eat. She has always bought clothes for Colton that she either found on sale or at a garage sale. If you know her you know that she is one of the most giving people you could meet. They both have always been there for us, and most parents are for their children. They are always willing to take Colton when I'm in the hospital or even when I'm not he loves spending time with them. We are a very close knit family. <br />
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You can imagine how devastated we all were in August when Janet was diagnosed with Kidney and Brain Cancer. It was followed by brain surgery and having her kidney removed, and through the grace of God came through those surgeries with flying colors. Unfortunately it was short lived. In December she became sick again, and after a CAT scan in January they discovered another tumor in her brain. After a MRI she was referred to Henry Ford Hospital in Detroit where she seen a neurologist who presented her case to a panel of 25 neurologist and oncologist. They then called and said she would go down again for a PET scan this week. They also said she will have to have brain surgery again, we don't know when yet, and some form of radiation. There are several different types of radiation they can do, we don't know which one it will be yet. She was admitted to Midland again on Thursday with a bladder infection, she was very nauseated and throwing up all the time for a few days while there, but that has gotten better and she came home yesterday. She is very weak, especially on her right side, her speech is slurred, and she is sometimes confused or can't focus. This is all symptoms from the tumor. It's hard to see such a strong woman look and feel so weak. I have faith in God she will return to the strong, can't hold her down woman! <br />
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I didn't even mention my sister in law Shannon and her husband Phil! Shannon is going through so much being there and taking care of her mom and dad. She still texts me to check on me, ask what she can do for me at home, if Colton is taken care of, does she need to make Brad lunches just telling me if I need anything to let her know! She picked up Diesels medicine for us, you just can't ask for better. And Phil, he's from the south with a thick southern drawl. He chatted with me on facebook for a bit the other night, and the first thing he said just put a smile on my face "Hey sugar" and I read it to myself in his voice :) lol It's just the kindness of being there, chatting with me, knowing that they are there if we need anything, and all while going through one of the hardest things there is. <br />
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Brad's cousin Lori has also been a blessing, she has flown home twice from New York to be with the family. She has been a tremendous help, because sadly she came through cancer with her husband. Knowing how things go, and processes that need to be taken is very useful. Having her there to listen as well and give feed back has been great. She is also hosting a benefit in her hometown for Jerry and Janet in the next month or so, to help them with there expenses. Taking the time to stop and see me here in the hospital in Grand Rapids when she flew in on Saturday. She is a beautiful soul, and I am blessed to have her in my life. <br />
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There is so many of Janet and Jerry's family that are truly great people and I am so happy and blessed to have married into such an amazing family. Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com1tag:blogger.com,1999:blog-8130020294689067466.post-69168482913704391302013-01-19T12:55:00.001-08:002013-01-19T12:55:25.828-08:00A plan of action in place!It is my 3rd day here in the hospital, so far everything has gone pretty good. I did have a headache yesterday and some nausea that was kinda miserable. I talked with Dr. Fitch yesterday too, he said my x-ray showed infiltration in my left lung, and my blood work was all in "my normal" range. I asked him about doing the desensitization to the bactrum now or wait until my most resent sputum culture comes back to see if the results yield better susceptibilities. He thought it was unlikely with my history of Resistances that my new cultures would change enough to make a difference in the course of treatment. Our plan is to now move forward with the desensitization tomorrow morning. I will be given small amounts of bactrum over the course of 8 hours, if each dose goes with no reaction I will remain on it for probably 3 weeks. If I start to have a reaction with any of the doses they then go back one step and start again. It is successful with bactrum, not as successful as a penicillin may be, but Dr. Gonzalas feels I should do good and have success. <br />
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So I will continue my treatment plan and after the desensitization hopefully I will be on Zosyn, Bactrum, and Inhaled Colistin. I will probably be here a couple weeks, that will include lots of vest treatments! <br />
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Wish me luck :) Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-25005356594382510892013-01-18T10:15:00.000-08:002013-01-18T10:15:18.001-08:00You know you have CF and are in the hospital when...This is kinda inspired by my friend Jenny over at <a href="http://adamandjennylivingston.blogspot.com/2013/01/you-know-youre-mom-whensday.html">My life as a Livingston</a> who wrote this blog a couple days ago that was hilarious and spot on! If you don't read her blog already you should she's a great writer and really funny. <br />
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So you know you have CF and are in the hospital when....<br />
<ol>
<li>You tell the nurse tech to zero the scale first and to measure in kilograms not pounds.</li>
<li>You request a room by number based on the window space and view.</li>
<li>You tell the on call doctor what meds you will be taking, the doses, when you will be taking them, and for how long.</li>
<li>All the nurses on the floor know not to wake you before 10am.</li>
<li>You bring a full size suitcase and at least 2 other large bags for your stay and still somehow manage to forget something.</li>
<li>The nurses know you by name. (I love my nurses on 6 South at Spectrum in Grand Rapids)</li>
<li>Instead of calling the doctors first when you need to come in you text you nurse who is also your friend and tell her to save you a bed.</li>
<li>You also know the cleaning and transport staff by name.</li>
<li>You know the menu by heart, Tuesday lunch Lasagna, Thursday dinner beef tips and noodles, Friday breakfast cheese omelet. Because in the 4 years I have been coming here it has not changed!</li>
<li>Last but not least you don't wear a hospital gown and people look at you strange when you leave the floor, because your pushing an IV pole but look like a normal healthy person!</li>
</ol>
I could probably and will probably think of more. Can you think of some? Post them in my comments! Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-79536884347377444312013-01-17T21:21:00.000-08:002013-01-17T21:21:47.948-08:00Admitted to Club Med AKA HosptalIf your a facebook friend you already know I'm in the hospital and you also probably know the timing could not be worse. My mother in law is fighting cancer and some other nasty stuff that has come along with it, including a recent bladder infection that has landed her in Midland hospital again. She will be having another brain surgery sometime soon, but can't while she has this infection. She also has gall stones but I don't think they are bothering her so they will just leave them be. <br />
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Coming into the hospital is pretty routine for me. I normally don't have too many issues putting my life on hold for a few weeks to get myself feeling 100%. This time has been very hard. I tried to take oral anti-biotic at home for 2 weeks hoping that would put whatever was stirring in my lungs to stop, it didn't work. It started with me just not feeling great, I wasn't feeling really bad. Then one morning while doing my therapy I started coughing up blood, not a lot, and it is common in CF with irritation from coughing or infection. Then fevers started to come in the mornings and at night unless I took ibuprofen every 6 hours. The blood would come and go through out the past 2 weeks along with the fevers. Yesterday I woke up feeling pretty crappy, had a fever and was coughing up blood again. I finally said this isn't working I need to go in. <br />
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Over the past 2 weeks I had mulled over several ways to avoid this and reasons I wanted to avoid it are legit! <br />
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Reason 1- Wanted to be home for Brad and Colton and the rest of my married family as they are going through the hardest of times right now.<br />
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Reason 2- Scared coming in a hospital full of sick people could actually make me sicker, don't know if you've heard but there's a flu epidemic!<br />
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Ways I thought I could avoid it.<br />
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1- Oral anti-biotic (tried, didn't work) <br />
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2- Do home IV's. This question has been posed to me in the past and again today. If I ever do home IV's. The answer is yes I do every time I am on them, but only for the last week of treatment. I have always stayed in the hospital for at least 2 weeks to start with. There are a couple reasons for this. <br />
<ul>
<li>When I start IV's I always feel worse before I feel better, the meds make me feel like I have been hit by a truck, all I do is treatments, eat, and sleep. </li>
<li>My IV schedule is usually an IV anti-biotic every 6 hours, which usually equals out to be 6am, 12pm, 6pm, 12am. That schedule leaves me exhausted.</li>
<li>I don't "stop" life to take care of me. I am a mom and a wife, if I was home it would be very hard for me not do anything and rest. I have a great support system at home thankfully, my parents can take Colton and take care of him when I'm in here, but it's not as easy to ask when your home. </li>
<li>I have tried to do at IV's home only in the past when Colton was a baby, I never felt I got 100% out of the IV's because I just wouldn't rest. </li>
</ul>
Ultimately this time around depending on how things are going I may cut my 2 weeks in house to 1 week in and 2 weeks of home IV's. When it comes to my health I tend to be selfish, because if I don't take care of me I can't take care of others. I will always do whats best for my health and well being, it's not always easy, and has been extremely hard this time. <br />
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The plan for my stay right now is to get results from my sputum culture and x-ray and go from there. I am resistant to a lot of anti-biotic and allergic to many others, it leaves very few that my bugs respond to. So I may have to be desensitized to a med I'm allergic to. It's just wait and see right now, in the time being I'm continuing the oral Cipro and starting IV Zosyn. I will update when I can.Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com3tag:blogger.com,1999:blog-8130020294689067466.post-11655294243218282822012-11-14T21:45:00.000-08:002012-11-14T21:45:22.175-08:00Doubtfully Optimistic for a cureIn a previous blog I spoke of <a href="http://letmefly-jamie.blogspot.com/2012/02/cf-advances-and-my-thoughts-on-it.html">CF Advances and my thoughts on it.</a> In that post I stated that I didn't believe there would be a cure found in my lifetime. I still believe this and stated I would explain at another time, I think I'm ready to try and explain. <br />
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I want to go into this blog by stating that I completely believe and have faith in the CF Foundation and they do everything in their power for CF patients, new meds and striving for a cure. There is very much evidence to prove this statement, if you do some research you will find that the CF foundation does exactly what they say they do, and the money that is raised through and given to them absolutely goes to new research. I am not a pessimistic person. I am positive almost all the time and am highly annoyed by negative people, whiners, and complainers in general. I am also a realist. I always have faith and give a great deal of my troubles to God. But I also believe in the facts in society.<br />
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Disease is big business. Pharmaceutical companies make A LOT of money from drugs to treat disease. Let me give you an example. <br />
<br />
<a href="http://www.huffingtonpost.com/2012/01/31/kalydeco-cystic-fibrosis-cause-drug_n_1244218.html">Vertex executives said Kalydeco would cost $294,000 for a year's supply, placing it among the most expensive prescription drugs sold in the U.S. Specialty drugmakers are known to charge $300,000 or more for drugs that treat very small groups of patients.</a><br />
<a href="http://www.huffingtonpost.com/2012/01/31/kalydeco-cystic-fibrosis-cause-drug_n_1244218.html">"The drug is priced for the value it will deliver to this very small group of patients," Vertex Executive Vice President Nancy Wysenski told analysts.</a><br />
<a href="http://www.huffingtonpost.com/2012/01/31/kalydeco-cystic-fibrosis-cause-drug_n_1244218.html">Wysenski said Vertex would provide the medicine for free to people with no insurance and household income of $150,000 or less. The company will also cover 30 percent of copay costs for select patients who have insurance.</a><br />
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$294,000 a year, $24,500 a month, $6,125 a week, and $875 a day. Of course as stated they will help families without insurance, and with co-pays. But lets do some math, math was always my weakest subject so forgive me if I am wrong. Kalydeco helps about 5% of the CF population approximately 1,500 persons. 1,500X $294,000=$441,000,000. The reason the drug is so expensive? It only helps a very small group of people, meaning less is being manufactured which cost more. Which ever way you cut it that is a very large amount of money. The CF foundation works in collaboration with Vertex Pharmaceuticals and other companies to do the research and production of these drugs. They do this to expand greatly on the resources pharmaceutical companies have to labs and chemical compounds, improving there chance of getting these drugs developed. Vertex and other companies also invest in the drug research, giving them profitability. Now honestly I have no idea how much money they make from Kalydeco, and I find it somewhat comforting that they invest back into the CF Foundation. The CF foundation also funds programs for patient support and care.<br />
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This is only one example of a drug, a ground breaking drug in the CF community. But If you think of all the other diseases and drugs the treat them, there is a lot of money to be made. That is why I don't think there will be cure for CF or a lot of other diseases. What I do believe is at some point there may be a daily drug that will significantly slow or stop CF. That is like a cure, yes, but a cure to me would be something as simple a vaccine, or a simple procedure to fix the defect. Would I be happy with having to take a pill daily and stay healthy forever ABSOLUTELY! Like many do for many diseases. The bottom line to me is it's a business. The CF community always stays at about 30,000 because people are always dying and always being diagnosed. We are never ending money maker for these companies. I don't think they do this out of malice, and I believe their is many in the business to cure disease. There's just a lot of bureaucracy that goes along with it. Someone once told me "We can put a man on the moon, but we can't cure CF?!" <br />
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I really hope this doesn't come off as me being pessimistic or from a place of anger. I am not angry about it or nor do I dwell on it, it's just my honest opinion. I will continue to raise awareness and money for the Cystic Fibrosis Foundation and donate to other great causes working towards treatments for Cancer, Huntington's Disease, and many more. I will take as many drugs a day it takes to save/extend my life and raising and giving money to CF Foundation will lead to those drugs. Because although we may never have answers to these diseases there is always medical advances, and that is the next best thing. <br />
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Please visit <a href="http://www.cff.org/">www.cff.org</a> and look through some of the info they have, you can read all their reports and view the drug pipeline showing which drugs are where in trials. <br />
Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com3tag:blogger.com,1999:blog-8130020294689067466.post-23597076868376190482012-11-12T19:21:00.001-08:002012-11-12T19:21:53.607-08:00I love my little life!!<div style="text-align: right;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2y1YJVpxZp6Oj8E7xZEaF9ucCs6Ba0Vt4t39HUf0xIzuJaudhmot5X9CuAckUoR9qTggHqt4py3Gjbn1lIF1fpSTkdZIfK4g_rXA90GpdGGSNOMbTGscA1owo9NSES8P1gByk_L99CkY/s1600/120.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2y1YJVpxZp6Oj8E7xZEaF9ucCs6Ba0Vt4t39HUf0xIzuJaudhmot5X9CuAckUoR9qTggHqt4py3Gjbn1lIF1fpSTkdZIfK4g_rXA90GpdGGSNOMbTGscA1owo9NSES8P1gByk_L99CkY/s200/120.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Brother, myself, and Sarah his girlfriend.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Me, Grandma Mable, and Colton</td></tr>
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I love my little life with my amazing husband, son, and dogs! I have had the most amazing 2 weeks filled with so much love I could literally feel myself overflowing! If you read my last post you know I celebrated my 30th birthday on Halloween, well I thought I celebrated it! Little did I know, I would really celebrate it the Saturday after. Brad my amazing husband, my Mom and family threw me a surprise party. I was completely clueless, blindsided, and surprised! The emotions I felt when I walked in that room were beyond words, I started crying, I was happy and so overwhelmed by the love I felt from everyone in that room! So many helped to make it perfect and make such amazing foods, all my favorites! I was shaking with excitement. It's so hard to explain how I felt. As I said in my previous blog I never thought I would celebrate this many years of my life. So many in my family have always held me so close because of this fear too, no ones ever came out and said that but I've always just been able to tell. There is so many people that mean so much to me. The obvious ones Brad, Colton, Mom, Dad, Brandon and all the rest of my immediate family, but then there are people who may not think there a big part of my life, that we may just be friends or acquaintances, little do they know they mean the world to me. Every person who comes into my life has an impact, it may be big, it may be small, it may even be bad, but it's all a part of my life making it a part of me. Just like CF. I only hope these people know the appreciation I have for them. The love of my family has no doubt kept me fighting so hard to kick CF booty, especially in the really hard times when I want to just give up. The thought of their love for me and the pain and disappointment it would bring them if I gave up brings me back every time. I love my family so much!! My cousins are more like siblings to me and the love and bond I have with them is really quite special. The younger ones being grown now and bringing significant others into the family that I come to love too! I can't even go into the love between my Grandma and me in this blog, but her impact on my life is beyond words! I have a huge support system and am blessed and very loved.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiu9bkDpus7NZOQV8lAuO0kKpk4jWlGfm9NYnKsAeKemTL3yIP_f2fTnq74GP_4mKO-t6eqRuoH3NfqC_njSdadWXc1sgQle3KIt0gp8Ox1DitWgjW-cUO9soeXG8VeRg-IwxTOUI2ovI/s1600/262059_4921219317218_802764998_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiu9bkDpus7NZOQV8lAuO0kKpk4jWlGfm9NYnKsAeKemTL3yIP_f2fTnq74GP_4mKO-t6eqRuoH3NfqC_njSdadWXc1sgQle3KIt0gp8Ox1DitWgjW-cUO9soeXG8VeRg-IwxTOUI2ovI/s200/262059_4921219317218_802764998_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Horseback riding</td></tr>
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Then less than a week later I got to go on an anniversary get away with Brad to celebrate our 9th year of marriage. We went to a beautiful bed and breakfast, Castle in the Country in Allegan MI. It was such a beautiful area and we got to go tour downtown Holland as well. We got massages, relaxed and re-connected! It was beyond amazing. We went horseback riding which I loved, miss riding so much! Ate at some great restaurants and went crazy in a candy store! Who could ask for more?! The whole time I just couldn't stop thinking I love my little life! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie4alpHJV6OV4jhnBaJirnzJYix1QmbLC6wm51mJD5LlexzhrcH9R4gZwwPWLU1Xh4FpWinp-HK0KpegJld322GJBbsZF_KC_QLgqZVeEpeFYW9COFHm8pYbN5Gz3PDBgXb0fLnCs_EMI/s1600/544869_4921208476947_1569763790_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie4alpHJV6OV4jhnBaJirnzJYix1QmbLC6wm51mJD5LlexzhrcH9R4gZwwPWLU1Xh4FpWinp-HK0KpegJld322GJBbsZF_KC_QLgqZVeEpeFYW9COFHm8pYbN5Gz3PDBgXb0fLnCs_EMI/s200/544869_4921208476947_1569763790_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Out in front of the Bed and Breakfast</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSQUccNNJtrvqcQPABSfOcwQ6qvdQBAd6UO_s3RqxMD4WfbAPIug0JjlHN9L3Zt5VC-0yNtVeOK_uYtTirubo2pKpx3HUfAIrNbEjftbXXAVGEZ5CM0yxtmGypCbpl6uFJ-czacZ4TRhc/s1600/59075_4920357535674_1044263880_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSQUccNNJtrvqcQPABSfOcwQ6qvdQBAd6UO_s3RqxMD4WfbAPIug0JjlHN9L3Zt5VC-0yNtVeOK_uYtTirubo2pKpx3HUfAIrNbEjftbXXAVGEZ5CM0yxtmGypCbpl6uFJ-czacZ4TRhc/s200/59075_4920357535674_1044263880_n.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Downtown Holland</td></tr>
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Also before my birthday Brad said my gift from him was to get a puppy, I had been looking for a few weeks any ways. So we went to the shelter.I went in thinking I wanted another big dog and a girl, because I'm surrounded by boys! Well I came out with a boy, Frank, who is a Dachshund/Lab mix! If your thinking about getting a puppy PLEASE visit your local shelter! You just will never know who will win your heart, like our little Frank did! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH5sW1f5hoBwO7O8iWi4ilmrpMS6OkxNg3PXVcMIh_N-D9fj-EgoZMRY_zbv76g4ZIDWhdvuynMYR9Y9OfxgieAhvyiFpgkaIme76R1fKpRXfZyeYGNLaXlHtVZNFkJi7APqfsG96UQJA/s1600/387916_4911188906464_1324645620_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH5sW1f5hoBwO7O8iWi4ilmrpMS6OkxNg3PXVcMIh_N-D9fj-EgoZMRY_zbv76g4ZIDWhdvuynMYR9Y9OfxgieAhvyiFpgkaIme76R1fKpRXfZyeYGNLaXlHtVZNFkJi7APqfsG96UQJA/s320/387916_4911188906464_1324645620_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Frankfurt Pickard Purchase</td></tr>
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Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com1tag:blogger.com,1999:blog-8130020294689067466.post-71714009729664116352012-10-31T20:07:00.000-07:002012-10-31T20:19:22.651-07:00I made it! <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3KUpI6_HpD8pEJKmJ8g-A-IgCX8vcLtzPiyLUqxC_0Zh6__NJMQAkUas7MpKcVj1SiJmcFb25PsuNzOJLq0vZIn-WTcqofq2Yte1U-HC-O_7absOEjLJ6HZCA10kQPa0zCL81TdKnv9E/s1600/615726_3934407647059_2058302924_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3KUpI6_HpD8pEJKmJ8g-A-IgCX8vcLtzPiyLUqxC_0Zh6__NJMQAkUas7MpKcVj1SiJmcFb25PsuNzOJLq0vZIn-WTcqofq2Yte1U-HC-O_7absOEjLJ6HZCA10kQPa0zCL81TdKnv9E/s400/615726_3934407647059_2058302924_o.jpg" width="400" /></a>Today is my birthday, I am 30! An age I honestly never thought I would reach until recently. As most of us with CF born in that time period, our parents were told we would be lucky if we made it to grade school. But my Mom and Dad never treated me any different, and my Mom says that she never thought I was going to die at a young age. I was always told the truth about CF, always knew the age median of my estimated life expectancy. It never really scared me, but I always felt like I was chasing my own death. I would reach an age and the life expectancy estimate would increase, which is awesome! I want to make it clear that my parents or anyone ever made me feel like I was going to die, in fact the exact opposite. It's just the inner part of me that has always felt/thought like this. A little less then 8 years ago I lost a friend to CF she was 31 and has 2 daughters that were quite young at the time. I was a newly married, new mom. This loss hit me hard, I was terrified I would leave my son at to young of an age where he wouldn't remember me. I remember telling my best friend "I will be happy if I make it to 30, at least then Colton will be old enough to remember me." I am beyond thrilled I have reached this milestone. I have done so many things my parents were told I would never do. I graduated high school, I married, I have a son, and I have even traveled some. I have lived my life to the fullest and experienced amazing things! I lived to see my 30th birthday. I am over joyed and now that I have made it this far I will not except anything less then at least another 30 years. I also have a heavy heart. The CF community lost 5 lives on Friday to this terrible disease! Two of which were in their 40's which is amazing, but not enough, it's sad that 40 is an amazing age to reach, when in reality it should be the start of a new era in someones life! Sadly the one beautiful young lady was just 22 with her whole life ahead of her. With countless others fighting for their lives. I love my birthday, I always have. It's Halloween which has always been so much fun for a birthday. I cherish my birthdays dearly. But this monumental birthday for me has been by far the most cherished, and mostly because I never thought I would see this day come. Do me a favor and cherish your birthdays too, don't complain about getting another year older, rejoice in the fact that God has given you another year to live on this earth. We always dress up and go out to a costume contest. This year I decided to be a Sugar Skull which is from the Mexican holiday Day of the Dead. It really was very symbolic for me. Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com2tag:blogger.com,1999:blog-8130020294689067466.post-34252040311539496872012-09-19T14:06:00.000-07:002012-09-19T14:06:56.331-07:00Lung Transplant in my future??<span style="font-family: Arial, Helvetica, sans-serif;">There was a time in my life when I was maybe 16 or 17 that I had decided I would never get a <a href="http://en.wikipedia.org/wiki/Lung_transplantation">lung transplant</a>. I had read stories of them in patients with CF and at that time it seemed like a lot of pain, suffering, and difficulty for a <em>chance </em>to <em>maybe</em> live a few years longer. It didn't seem worth it to me at the time. </span><br />
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Asking myself this question 13 years later and the answer is yes I will get one if my health comes to that point, I am able to be listed and most of all actually get a donor. A lot has changed over the course of those 13 years, not only with me, but in the medical world as well. What you might ask made me change my mind? And no it is not a maturity thing, as a lot of CF'ers I was very mature for my age at that time. I thought way more about my future then most, and didn't think I even had 10 years to live. First and for most though I am a Mom. Being a Mom brings your mind to a whole new setting. That setting for me is <i>do everything in my power to stay alive to be here for my son.</i> I am also a wife and I have the most amazing, and loving husband and cannot give up a chance to spend more of my life with him. I am a Daughter, Sister, Grand Daughter, niece and cousin. It would be selfish of me to not take a chance to live, because I know how much they all love me and I love them. Medical advances are also a huge difference in change of mind. I have spoke with several CF lung transplant recipients and all have promising lives ahead of them because of the chance to live with <i>new</i> lungs. And I would be lying if I told you the idea of breathing with lungs of full capacity or near it was not exciting, or the possibility of running, biking, or hiking without getting short of breath. Heck I'd settle for not getting short of breath folding laundry!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">You have to understand a little bit about lung transplant in CF. It is not a cure to CF, it's trading one demanding part of my disease off for another demanding regime, although it's worth the trade when it's successful. You have to be sick enough to need new lungs, but healthy enough to receive them. Which is a fine line to walk. I am "fairly" healthy right now, but that could change at anytime, one infection could tip me into transplant range. They most generally start to look at you for lung transplant when your lung function is in the low 30's and below, there are other factors they look at as well, but that is one of the main ones. Mine have been bouncing around in the 30's for about a year now. When you get to the point of being sick enough it's almost a "what have I got to lose" scenario. You run the risk of going into a transplant and not surviving, but you were facing death soon anyways. It's very hard to explain for me, especially because I'm just learning about it more in depth.
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<span style="font-family: Arial, Helvetica, sans-serif;">If I could stay where I am at now and live a long life I would be happy to do that, and I will continue to fight to stay and always improve upon where I'm at. But the ugly truth about this disease is I most likely won't stay in this state for a long life. That is why my CF doctor, Dr. Fitch (my hero) wanted me to have a consultation with a transplant clinic, so today I did. My CF clinic is in Grand Rapids MI at Spectrum Butterworth Hospital, they started doing heart transplants about 2 years ago and have been in the process of setting up a lung transplant program this year. They have all the doctors on staff, and are just waiting for their <a href="http://www.unos.org/">UNOS</a> certificate to start doing lung transplants which they expect to receive in December or January. I had a consultation appointment today with Dr. Girgis to go over my history, and just explain the whole process. It is basically a meet and greet, I will see him every 3 months now along with Dr. Fitch my CF doctor, to establish a relationship and follow me. If I get to the point where they feel I need to be listed I will then start that process, which includes a lot of medical, physical, and psychological testing. They then gather all that info together and decide whether I would be a good candidate to be listed or not. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So is lung transplant in my future maybe. But only God knows his plans for me. But in the mean time there are over 70,000 on the active waiting list for organs, some of which are my friends, so become a donor please. <a href="https://services.sos.state.mi.us/OrganDonor/Registry.aspx">https://services.sos.state.mi.us/OrganDonor/Registry.aspx</a>
this is the link for Michigan, if you live in another state just google how to become one in your state. It's easy and takes less then 5 minutes. </span>Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com3tag:blogger.com,1999:blog-8130020294689067466.post-75189868101689571312012-08-31T21:08:00.000-07:002012-09-10T18:33:00.346-07:00DIY Thirty One bag liner (my first DIY blog!)So I like most every other woman in America am obsessed with Pinterest! I find myself re-pinning everything, wanting to learn to sew, bake, use power tools, and just be creative! I occasionally find something I think I can pull off. Well I found this one a while ago and it only lead to a picture no blog or instructions to go with only a short explanation in the caption. But it was pretty self explanatory anyways.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyVRoQrqVhKgk_HuTdPASQPWjAnAdGDsWf0FyUCIZL7txHMl4mXjjVFiKrtvTpLHNtsWh6iJWkBB9E46EnK8qEfmIid11wtbxqrjAAfkxBrOcLo59W70X0M64YrmQoI9EfTiztcR6iipQ/s1600/64457838387281303_r8y2uhpj_c.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyVRoQrqVhKgk_HuTdPASQPWjAnAdGDsWf0FyUCIZL7txHMl4mXjjVFiKrtvTpLHNtsWh6iJWkBB9E46EnK8qEfmIid11wtbxqrjAAfkxBrOcLo59W70X0M64YrmQoI9EfTiztcR6iipQ/s320/64457838387281303_r8y2uhpj_c.jpg" /></a></div>
<i>This is the picture from the pin</i>
If you own a Thirty One Utility tote you know it doesn't stand on its own, it slouches down. In the original pin they had used a summer vinyl table cloth so it can be wiped off if needed. I couldn't find one I liked and figured a shower curtain would serve the same purpose, so today when I found a colorful zebra print shower curtain(my favorite) on clearance at Meijer I decided to go for it.
I first went to my Thirty One catalog to get the dimensions of the bag, I could have measured, but they already do and I'm not that accurate at measuring. I then went to the garage and used some card board box's from my car parts that luckily had not been recycled yet. I cut 3 pieces the size of the front back and bottom of the bag 11.75"H X 21.5"W which is the same size, and 2 pieces the size of the sides 11.75"H X 10"D. I brought the pieces in to do a fitting before I covered, I did end up having to trim them down even more to fit nicely.
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Because the shower curtain I bought was kinda see through I had to paint the card board for a background color, I originally thought black spray paint would work good, but it didn't work very good and didn't set my pattern off very good either. So after looking through our paint collection I decided to use a lime green we had used in Colton's room a few years ago. Now had I used a table cloth or solid shower curtain I could have avoided this step, but it was on sale and I liked it.
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So I painted all 5 pieces and let them dry, I could have done 2 coats but one was enough with the print on top to cover any imperfections. I then measured enough of my curtain to cover each piece and cut it up. Then I just used spray adhesive to glue the shower curtain to my card board pieces. I'm not that great at getting things to fold and cover tightly, but the curtain was kind of stretchy so it worked pretty good.
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I love the way it turned out and the colors and patterns together! No more slouchy Large Utility Tote for me.
Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com19tag:blogger.com,1999:blog-8130020294689067466.post-12787479891735082602012-07-15T15:23:00.000-07:002012-07-15T15:23:08.239-07:00But I don't want too.....(insert 5 year old whiny voice here)The last time I was in the hospital was in November, it was pretty routine I had a sinus infection and didn't want it to get out of hand before the holidays. (I realize referring to spending weeks in the hospital as "routine" is kind of ridiculous, but that's my world) So anyways at that point in time it had been 4 months since I had been in, which was not bad considering my spring consisted of 2 stays within 2 months. Well I have now gone 8 months without being hospitalized, which is great, it's been a long time since I've gone that long between a stay. You get where this is going don't you?! Yup I think it's time to head in for some drugs. All the tale tell signs are there, having more day's of not feeling well,laundry not getting folded or taken care of, I moan at night in my sleep when I can't breathe good, Brad says that I do this almost always when I need to go in. It's hard to explain sometimes. Do I feel terrible? No. Do I feel great? No. Do I always let myself slowly feel worse until I realize I need it? Yes. This happens because with the way I feel it kind of happens slow so I adjust to it without realizing it's even happening. Then when I go in get meds and the works, I realize how bad I felt, because when I'm done I feel SO much better. Having a tight chest the last few nights, and having to put on my O2 the other night before going to bed (I only wear it when I sleep, unless I need it which is usually only when I'm at this point) just sitting is kinda the wake up call for me. I said to Brad tonight "I need to go in the hospital" his response "Your just now saying it out loud?" Yeah he knew, he knew I knew, but like the good hubby he is lets me do it on my own time. I don't hate going in the hospital, I know that sounds ridiculous. I hate it more now that it affects Colton and Brad, but growing up being there so much I am kinda use to it. But what I do HATE is going in during the summer! That's more time Colton is home, when I am his primary care giver it makes it hard to be away, not to mention I miss him (although I will admit the first couple days away are not to bad! Oh my gosh I'm a horrible mother, I'm suppose to miss my child every minute I'm away! Well sue me then because that's how I feel! lol). Colton had a hard time last year when I was in a lot, so I'm always worried about him. I talked to him tonight explaining I hadn't been feeling good (he can always tell too though) trying to let him down easy, and he says "well maybe you need to go in then" I said "yeah I probably will" he then said "well better for you to be gone for a little bit then forever". This kid is wise beyond his years, and continues to melt my heart and bring me to tears. Now I really do feel bad for enjoying my first few day's "away"! It's sometimes hard for me having to rely on my in laws and my parents to take care of him while Brad's at work. But he's always in good hands, by the way, I have amazing in laws! I'm looking at my calendar thinking of all the stuff I'm gonna miss, pouting like a baby, my favorite band Shinedown concert, just got my car back from restoration and had some car shows in mind to take it too. Brad being that great hubby again, says "Those things don't matter!" and he's right in the grand scheme of my health they don't matter. But I still hate missing things! I am the farthest thing away from a home body, I am social and love to keep busy, "running' the roads" as we call it. But we live in a very rural area with lots of small towns 5, 10, and 15 miles apart, in which during the summer there is a festival of some sort going on almost every weekend with lots of fun, free entertainment. So I miss out a couple weekends, but I don't want too!!!! (insert that whiny voice again)Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com3tag:blogger.com,1999:blog-8130020294689067466.post-72537514642023302032012-07-06T22:35:00.000-07:002012-07-06T22:41:40.561-07:00All things Disney! Warning this is long :)<div class="separator" style="clear: both; text-align: center;">
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As I had mentioned before we went on vacation to Disney in March. It was amazing, we stayed 5 days 6 nights, went to all 4 Disney parks, Animal Kingdom twice, and Downtown Disney. It was thoroughly exhausting to say the least but worth every second! I did really good health wise, didn't get to tired during the day and felt great the whole time. Wish I had known the whole time that had I taken my letter from my CF doctor, I could have gotten better access! We found out the last day we were there at Animal Kingdom, which allowed us to use the Fast-pass/Handicap lines, that are most generally shorter. Had I known for the rest of the parks we probably could have seen a lot more, spending less time in lines waiting. Either way we still had a blast and seen a lot of stuff. There is so much to see and do it can be a little overwhelming. I hope to go again before Colton really grows up :)<div class="separator" style="clear: both; text-align: center;">
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It's really hard to choose a favorite park, ride or attraction. I loved the Magic Kingdom because of it's Magical feel. You really get the Disney movie feel there. With all the characters, and Princesses and Prince's, and parade. <div class="separator" style="clear: both; text-align: center;">
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Epcot had my favorite rides, Test Track, and Soarin'! With a lot of other kinda scientific stuff and evolution of culture's. It has a lake in the middle of it and all around the lake is restaurants, stores, and places representing different country's, we did not get to walk all the way around, but what we did see was pretty neat.<div class="separator" style="clear: both; text-align: center;">
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Brad is not into amusement parks or rides and he went on almost all of them with us, and his favorite was Soarin' too. Hollywood Studio's is probably my second favorite. It's just very cool, you feel like your on a movie set the whole time. And Tower of Terror was another favorite ride of mine.<div class="separator" style="clear: both; text-align: center;">
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I rode it with Brad's friend's daughter and niece that happen to be on vacation the same time we were. Brad. his friend, friend's wife, and Colton didn't want to ride it. Funny little story. We had to wait in line for quiet a while and it got to be longer because one of the "elevator's" on the ride was not working right. Well we finally got our turn, screamed our heads off had a blast on it. When we got off Colton comes running up to me like a concerned parent "What took you so long? I was worried about you! We have been waiting forever!" Hugging me the whole time, just gives you another idea of Colton's "grown up" personality. The next favorite part of Hollywood Studio's was the Stunt show. It was so cool, they showed you stunt cars, and how stunts are done in the movies. They burn a lot of rubber, and Colton says "I love the smell of burnt rubber in the morning!" LOL It was really the afternoon! The real Lightning McQueen and Mater were there too!<div class="separator" style="clear: both; text-align: center;">
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There are lot's of 3D and 4D shows in all the parks too, those are fun too
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We went to Animal Kingdom our last two day's. Finally got Colton to ride Expedition Everest with me, it was a blast, and he did get a little scared but was good by the end of it.<div class="separator" style="clear: both; text-align: center;">
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The Bug's life that is in the center of the Trunk of the Tree of Life was really neat, it was a 4D show, you get fogged, sprayed, and Bugs running under your butt!
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The best part of Animal Kingdom is the Safari, and per everything Disney they act out everything to keep it real for the kids which is very cool! On the Safari you are on the hunt for poachers, but you ride through and get to see lots of real animals, Crocodiles, Giraffes, Elephants, Lions, Hippo's, and many more sometimes up close.!<div
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Animal Kingdom also had the best place we ate at all week, The Rain Forest Cafe', very delicious! The Cheese Cake drizzled in chocolate and raspberry sauce was to die for, I'm drooling just thinking about it now :) We spent the last night there at Downtown Disney, which has lot's of shopping! Colton wanted to go to the Lego store, I wanted to go to the Disney store, and Ghirardelli Chocolate store! We also went to the Christmas store and got a Mickey tree ornament to remember our vacation. It was over all really a Magically vacation and I can't wait to go back. I learned a lot of things to do and not to do, but that always comes with a first time experience with anything. I am hoping to write a guide from my experience for those first timers, and a friend who has asked me about it. I have been on vacation with drawl ever since!<div class="separator" style="clear: both; text-align: center;">
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Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-31436531617067184622012-06-26T22:04:00.001-07:002012-06-26T22:04:34.904-07:00My Dream for CF..Wow! Been too long since I blogged last! Proof I have a tendency to not finish things, the blogger challenge, I failed. Moving on..... Let's see I have been feeling great, we went to Disney in March, I'll post a blog about that soon I hope. I had clinic in May, PFT's were same, weight was same, still hoping to increase both by the end of the summer.
We had the annual Great Strides walk Cystic Fibrosis in Edmore that I coordinate. We did fantastic, raising over $12,000.00! I had some great awareness opportunities this year as well. Myself and some volunteers were featured in a couple news paper articles. My cousin's daughter nominated me for a <a href="http://www.fox17online.com/news/fox17-woman-fighting-cystic-fibrosis-pay-it-forward-person-of-the-week-518-jamie-purchase-20120518,0,4197794.story">Pay it Forward Person of the Week </a>at our local FOX news station, so they did a story about me and the work I do for the Cystic Fibrosis Foundation. That lead to some other opportunities for fund raising and future events. A local EMT/firefighter had written a book called The ER loading dock and donates proceeds to different charities. After seeing my story on the news he contacted me and wanted to donate 2 months worth of his book proceeds to the Cystic Fibrosis Foundation! So make sure you go <a href="http://http://www.lulu.com/shop/search.ep?type=&keyWords=the+er+loading+dock&sitesearch=lulu.com&q=&x=9&y=9">here</a> and get your copy by August 17th! I also volunteered at a new CF walk location this year in about 30 miles north of me. A family I meet last year through the Edmore walk decided to coordinate their own walk in their home town, their son Parker has CF. That event was today and raised over $15,000.00! I'm pretty proud of our area, with 2 walks we have raised nearly $30,000.00 for CF research, that is simply fantastic! I was asked to share <a href="http://http://www.youtube.com/playlist?list=PL85E276593EC4938F&feature=plcp">"My Dream"</a> for CF, the CF foundation has a series of videos on their youtube page of different peoples dream for CF in the future. This is what I shared today. <i>Hi, I'm Jamie Purchase, I am 29 and I have CF. I had many dreams as a child, I wanted to be a princess, a doctor, a figure skater, a model, a beauty queen and the list goes on and on. But what I dreamed of most was to not have CF or be defined by it. My dream is the same today. I dream of a day when CF is known not because it's a deadly genetic disease, but because it is no longer a deadly disease. I dream of the day I don't turn on my computer to find another friend has lost their battle against CF. My dream is a CURE! </i>
I have lots of topics for blogs on my mind, and now that I have a laptop again I hope to post more regularly again :)Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-32732244842632849752012-03-26T18:28:00.001-07:002012-03-26T18:28:45.970-07:00My Video 3/26/12 at OneTrueMedia.comA few months again I posted a blog about my cousin doing a photo shoot with me in a day with CF. Well I finally got a video done with some of those photos and few of my own. I hope you enjoy it!<br /><br /><div><embed src="http://www.onetruemedia.com/share_view_player?p=10973dae9fa98fecb951f8b"quality="high" scale="noscale" width="408" height="382" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=10973dae9fa98fecb951f8b&skin_id=701&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:408px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt5" target="_blank" style="text-decoration:none;">Make a video - it's fun, easy and free!<br/><span style="text-decoration:underline;">www.onetruemedia.com</span></a></div></div>Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-60545853204935778702012-02-21T19:20:00.000-08:002012-02-21T19:43:07.991-08:00Day 18 of 30 day blog challenge5 Things that irritate me.<br /><br />1-People that complain about something they have the ability to change or do something about.<br />2-Most self portraits on facebook, but more specifically self portrait addicts, you know the one friend that does it ever day, maybe even every hour, and the from up above shot, and OMG the duck face pout "I think I'm hot kiss face". I honestly think I could do a whole post on things that irritate me about facebook.<br />3- People that are not appreciative of what they have.<br />4- Jersey Shore. I simply cant stand the fact that they make millions off the degrading, distructive behavior they display. Also hate the influince it has on young people.<br />5- People that still use their cell phone in the movie theater! Turn it off or I will turn you in! Yes I'm the tattle tale :)Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0tag:blogger.com,1999:blog-8130020294689067466.post-38352188975760252932012-02-18T16:37:00.000-08:002012-02-18T17:04:47.517-08:00Day 16 and 17 of 30 Day blog ChallengeI'm doing day 16 and 17 together.<br />Day 16 - Describe a passion you have.<br /><br />I like to think I have a lot of passions in life. But I think mostly their just interests. What I can tell you I know I'm passionate about. Being a mom, I love Colton beyond anything I could ever imagine. But it's not just my love for him I'm passionate about, it's raising him to be a wonderful man, husband, and citizen. Love is not enough to do that, I mean yes it takes lots of love and patience, but it also takes the right kind of discipline and guidance. The love is the easy part, the other stuff not so much, but I love him enough to teach him the difference between wrong and right. I would not be doing him any favors if I didn't. <br /><br />Another passion of mine is my husband and our marriage. We have been together almost 9 years, married 8. When we got married to each other we talked about it a lot, and even had to have per-marital counseling. Both our parents are still married, and we verbally agreed before the wedding that divorce is not an option, ever! We had a few rough years, and let me tell you it was not easy! But we came out of it stronger then ever and I am so thankful we both have the drive to fight and never give up on each other no matter the obstacles.<br /><br />I am passionately in love with my dogs!<br /><br />My last passion that really gets me excited and feeling full of life is Drag racing my 69' Chevelle! I can't wait to have it back and running again, there is no other feeling like running 103 miles an hour down the track, trying to get the best time and beat the guy next to you. Track opens in April! <br /><br /><br />Day 17 - How you hope your future will be like.<br /><br />Long, healthy, and hopeful!Jamiehttp://www.blogger.com/profile/18333703550487385190noreply@blogger.com0