Q&A about my Lung Transplant and CF

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!

Q: Krista Peterson -Will cf hurt these lungs as well?

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.

 

Q: Nicole Gorsuch- Can you describe how your first deep breath felt with your new lungs after you woke up? :)

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.

Q: Lynn Porter- Do you know the age you would have to be for a lung transplant and can they do them for children with Cystic Fibrosis?

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.

Q: Mary Church Olson- Will your lungs last a life time? Praying they will!

A: There's no way to know for sure if they will last a life time. I have faith they will though.

Q: Ginny Hutson Miller- How long were you on the list ?

A: I was on the list for 8 1/2 months.

Q: Juanita Custer- Does 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?? ;)

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.

 

Q: Heather Renae Schafer - Do u have to be on anti rejection meds now for the rest of ur life??

A: Yes, I will be on anti-rejection medications for the rest of my life

 

Q: Deb Bendon - Will you get an opportunity to meet the donor's family?

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.

Q: Lorena Holliday Justice - How has this changed your view on life? Any big plans for the future??

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.

Q: Megan Jean - What was it like when you came to the first time and realized you had new lungs?

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.

 

Q: Karrie Hutchins - Does this mean longer life? I ask because in that video I think the kid said age 36.

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.

 

Q: Taylor Eames - How does it feel to take a deep breath now?

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.

 

Q: Greg Howell - Biggest difference you can feel?

A: Not coughing and getting short of breath all the time and feeling my lungs expand more than I ever remember feeling.

Q: Deb Bendon - How much pain were you in right after the surgery? How long before you were walking after? Could you have visitors and how soon?
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.

Q: Heather And Trevor Wood - 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!

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.

Q: Heather Renae Schafer - Do u feel like a totally healthy normal breathing person now???
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.

Q: Taylor Eames - Jamie, just curious, but what were your PFT's like before the transplant?
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.

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.

I'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.

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.

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.

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.