Well after having a relapse in the hospital, I got out on Friday the 13th with plans to do 2 more weeks until I went to clinic and then they would decide if I needed it longer or not. Had some issues with my PICC leaking at the entry site, I think due to the fact that they could only make it a mid-line, and the hole where they put it was huge due to messing with it so much to try and get it all the way up my arm to my heart. It's still leaked on and off, but still works so I'm keeping it to finish my meds, which is Tuesday. When I went to clinic my numbers were not good, 38% FEV1, my baseline is 47% and I was almost to that when I was released from the hospital on April 18th. Not really sure why I had a sudden onset of illness so soon after feeling so good only 2 weeks before. The doctor is going to do more extensive testing on my culture's, told me to get rid of feathered pillows I have on my couch, and consider leaving my home for a while to see if it's something environmental, I don't think it is since nothing has changed in my environment. If my cultures come back normal then he wants a bronchial scope, I have had 2 of these in the past so I know what it's like. We also decided that the next time I need anti-biotics (hopefully not for a LONG time) I will have another Port put in, you can read about my last port here. I go back to clinic June 29th, he said all my cultures, will be back then, and we'll go from there. Hopefully at that time my numbers will be up I will feel great and there will be no need for any more test at all!
Moving on! We had our local Great Strides walk that I coordinate and run on May 22nd! This is our 3rd year doing the walk in my town. We live in a very small town rural area. So I was pleasantly surprised when we raised $10,000.00!! This is a great amount considering the size and the economic hit on our town. It was a beautiful day! We had a silent auction that almost didn't happen, but my amazing friend Kallie put it together for me within days of the walk! I had also organized tables for purple nail polish (our awareness color), temporary tattoo's, face painting and blue and yellow helium balloons all for 0.50 donations! We did a balloon release right before we started our walk in honor and in memory of those with CF or who have lost their battle. It was overall a great turn out with about 150 people! We had hotdogs and chips afterward. I love doing this walk every year and the fact that it is so successful makes me very proud. I am working on planning a Motorcycle/Hot Rod poker run for September, so if anyone can help with that or has some good idea's let me know.
Wednesday, May 11, 2011
I wanted to take this opportunity to talk about how fast CF can change in a person and how fast we with CF can get sick and sometimes things go bad fast. I'm not trying to scare people, I just want everyone to know that this disease is unpredictable and deadly.
As most of you know who will read this, I was just in the hospital in April, in fact I have only been off IV's for 2 weeks. And before that I was just in 4 months before in December. That is very uncommon for me, I usually go about a year between hospitalizations. In December I never felt like I got to my "base line" of feeling better. But In April I did, I felt great when I finished my meds. All that changed on Mothers day, I felt tired all day and just didn't feel that great. With my CF some day's I just don't feel good, there's no particular thing that don't feel good or symptom the only way to describe it is I just don't feel good, sometimes it's hard for "healthy" people to understand that, they seem to want to know what's wrong and what don't feel good, and I just can't explain it. So that's how I felt Mother's day and thought after my therapy's and a good night's sleep I would feel better. I had Brad get up with Colton Monday so I could sleep in, and I did I slept great the whole night didn't get up until around 11:30, probably sleeping close to 12 hours. Monday I just still didn't feel good, I seemed to still be tired, and was in and out on the couch most the day. Only really awake to do my therapy and eat when I was hungry ( which wasn't much). And then around 4:00pm I had a coughing fit, it caused me to have severe chest pain and I couldn't control my breathing. Now if you have seen me have a coughing fit, it's quite scary for other people, they think I am chocking and can't breathe and really have no idea what to do. I am normally fine after these fit's and once they are over I catch my breath and go on with my life, and assure anyone's that is freaked that I'm fine. Well after that fit Monday afternoon I couldn't get my breathing normal, so I did my rescue inhaler, that helped some and because Colton was home and I didn't want to freak him out I stayed calm and managed after a while to get my breathing under control, but I was still struggling and my chest still hurt really bad. I did not want to go in, it sounds stupid, but this has happened to me before, I have all these bad symptoms go in to ER they do blood, x-ray, all that jazz and nothing is abnormal and send me home, after a wasted 8 hour trip to ER. The only reason I did was because last time I went to clinic and he put me in I had not had such a great weekend and he was upset I didn't go in and told me please just go in next time. So I did. By the time I went in my breathing was better, until I would start coughing, which is a lot. And my chest still hurt. I still honestly thought they'd do the usual, and send me home with pain meds for my chest. Well they did the usual and it did show sickness, high blood count, my chest x-ray according to the one they had prior was worse so they thought I had pneumonia. The ER doctor said he wanted to admit me there, well I don't do anything of that sort without talking to my pulmonary doctor or at least the one that is on call, so I gave him the number and they said to transfer me down here to GR, I normally go to Butterworth but they were full so I am at Blogett, I was worried about coming some place new but they have been great here and am very happy with my care. Right now I am back on the anti-biotics I was on a couple weeks ago, and don't really know when I will be going home. I feel better then Sunday or Monday and Tuesday I was just exhausted from the night at ER and not getting transferred until around 3am.
I want to clarify my point, things happen so fast and could have been much worse. I could have collapsed my lung, or had a lung bleed from coughing, I know of these things and more that have happened to fellow CF'ers. These things are serious and can cause death. So many time's people with CF have died and people will say "I just seen them and I thought they were doing well". That's how fast this disease can change and take peoples life's. Every time I go in the hospital I am thinking about this, and thinking about everything I need to do to try and prevent that from happening. And don't think that it can be prevented because it can't, we do these thing's IV's, chest therapy, exercise, and rest to try and heal and not let the infection's take over, but for some sometimes these things are not enough and their lungs fail. Like I said I don't mean to scare but it's important to me people understand.
This is why we need a cure and to find a cure we need money for research! That's why I do my Great Strides walk every year and work so hard to raise money for CF, I don't do it for myself but for all the people with CF around the country and world. For the children that are still being diagnosed everyday with this disease, for those that are losing their life right now to this disease. For little Aleeya Chaney who's spirit is amazing, so she can live above and beyond what is predicted for her. I don't do it just for me, there's a whole world and community of CF'ers that need it too. So do something to help, raise money, join a walk team anywhere they are all over the country and states! Give up that pack of cigarettes or that $5.00 latte and give that money to CF! Every little bit helps and that's the truth. www.cff.org/greatstrides go now!