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I realized today that I have never discussed lung transplants and how that is what motivated my goals two years ago! 2 years ago in Jan. 2010 my lung function had been dropping steadily and was around 38%. I never EVER thought I would have to get a lung transplant and I never EVER wanted/want one. I always believed my behavior and work made up 70% of how well I did, my doctor & treatment was another 15% and the last 15% is luck. Luck, you don't catch the bugs that drop your lung function (basically).Luck, that I don't get sick. I avoid being around other CFers, because my body has built up immunities to certain drugs and allergies to others and I don't want to take the risk of getting sick. I work very hard to not get sick and as far as my luck goes with CF, it's not the best, considering all the surgeries and other medical problems I have along with my CF.
The idea of a lung transplant scares me! I think that is absolutely wonderful that it can give a CFer back their life! With Cystic Fibrosis it is another chance to breathe and live! And for many Cfers it is the only chance! Doctors start discussing lung transplants when lung functions is usually lower 30s. 2 years ago when I was at 38% I was terrified, even though I acted like nothing was wrong, it really bothered me. I asked my old doc one day about transplants and he had mentioned "you aren't there yet" The word YET! That little word was so horrifying sounding. I knew something had to change. I had to work harder, be more aggressive about my CF! I started looking for more aggressive clinic and better approaches. I had read about Transplants and survival rates in many papers. Factors that made it less likely to bounce back and survive, well, frankly, I didn't like what I saw. So here started an overhaul to my life:
I found Doctor B 1.5 years ago. Being in the 30s for Lung function kicked me into gear! since Jan 2010 I have gone up to 61% lung function and hope to continue further at each Clinic! I do more therapies, instead of doing some or a few of them, I try everyday to fit as many as I can in (out of the 8-10 I'm supposed to do). I have become more physically active, ran my first 5K, and I work at keeping my weight up everyday!I do not want to ever need a transplant, due to my many complications with meds, surgeries, etc. BUT:
Here is what I hope people realize:
While many people who need a lung transplant, usually only need one, A CFer needs both lungs, and in some cases a liver too! We have to be low enough in lung function that we are transplant list worthy, but once we are below a certain level of lung function/limited physical function (exercise) we are then too high of risk and not good transplant candidates. We have a window of opportunity and for many CFers it is just waiting to drop to that right % and hope!
I may be gaining my lung function back, but that is not always an option. It depends on why the CFers lung function dropped. If I had permanent damage in my pathways, scaring, etc it wouldn't be able to go back up. Luckily, mine hadn't progressed that quickly and I was able to get the crap out of my lungs before it did permanent damage. I started looking into cases with CFers and lung transplants 2 years ago. And I found some interesting facts. If a CFer has Cepecia B it is nearly impossible to find a hospital willing to do the Transplant.
I wanted to find a couple Transplant Stories on youtube to share. Most of the stories are interveiws and not before and afters! However, I found 2 that incuded before and afters! Justin's : (first video, 3 minutes) and Jaime's is below (rare: due to Cepacia B and it had lots of details, 9 minutes) I hope by sharing these two stories, everyone can see how it is different for every CFers and the obstacles CFers overcome to have a Transplant!
Justin's Story
Jaime's Story
I want to thank every single person who has chosen to be a donor! Thanks to many donors, many CFers have been given a 2nd chance to breathe and to live again! I know as I get older, I will see more of my CF friends having Transplants, and you never know what the future may hold. I continue to hope people can receive Transplants when they are needed! And I hope that I never need one, but if I do I hope that thanks to a donor I will be given a 2nd chance to breathe! And I have added a nifty Donate Life Button on my blog, that I got from Colleen's CF Blog! To read about her blog click here!
I realized today that I have never discussed lung transplants and how that is what motivated my goals two years ago! 2 years ago in Jan. 2010 my lung function had been dropping steadily and was around 38%. I never EVER thought I would have to get a lung transplant and I never EVER wanted/want one. I always believed my behavior and work made up 70% of how well I did, my doctor & treatment was another 15% and the last 15% is luck. Luck, you don't catch the bugs that drop your lung function (basically).Luck, that I don't get sick. I avoid being around other CFers, because my body has built up immunities to certain drugs and allergies to others and I don't want to take the risk of getting sick. I work very hard to not get sick and as far as my luck goes with CF, it's not the best, considering all the surgeries and other medical problems I have along with my CF.
I found Doctor B 1.5 years ago. Being in the 30s for Lung function kicked me into gear! since Jan 2010 I have gone up to 61% lung function and hope to continue further at each Clinic! I do more therapies, instead of doing some or a few of them, I try everyday to fit as many as I can in (out of the 8-10 I'm supposed to do). I have become more physically active, ran my first 5K, and I work at keeping my weight up everyday!I do not want to ever need a transplant, due to my many complications with meds, surgeries, etc. BUT:
Here is what I hope people realize:
While many people who need a lung transplant, usually only need one, A CFer needs both lungs, and in some cases a liver too! We have to be low enough in lung function that we are transplant list worthy, but once we are below a certain level of lung function/limited physical function (exercise) we are then too high of risk and not good transplant candidates. We have a window of opportunity and for many CFers it is just waiting to drop to that right % and hope!
I may be gaining my lung function back, but that is not always an option. It depends on why the CFers lung function dropped. If I had permanent damage in my pathways, scaring, etc it wouldn't be able to go back up. Luckily, mine hadn't progressed that quickly and I was able to get the crap out of my lungs before it did permanent damage. I started looking into cases with CFers and lung transplants 2 years ago. And I found some interesting facts. If a CFer has Cepecia B it is nearly impossible to find a hospital willing to do the Transplant.
I wanted to find a couple Transplant Stories on youtube to share. Most of the stories are interveiws and not before and afters! However, I found 2 that incuded before and afters! Justin's : (first video, 3 minutes) and Jaime's is below (rare: due to Cepacia B and it had lots of details, 9 minutes) I hope by sharing these two stories, everyone can see how it is different for every CFers and the obstacles CFers overcome to have a Transplant!
Justin's Story
Jaime's Story
I want to thank every single person who has chosen to be a donor! Thanks to many donors, many CFers have been given a 2nd chance to breathe and to live again! I know as I get older, I will see more of my CF friends having Transplants, and you never know what the future may hold. I continue to hope people can receive Transplants when they are needed! And I hope that I never need one, but if I do I hope that thanks to a donor I will be given a 2nd chance to breathe! And I have added a nifty Donate Life Button on my blog, that I got from Colleen's CF Blog! To read about her blog click here!
Thanks for the shout-out! :) The thought of a transplant totally freaks me out too, but I wouldn't say that I'm completely against it. I had a good friend from high school who received a transplant - you can read about his story here: http://howilivelaughlovewithcf.blogspot.com/search/label/Organ%20Donation
ReplyDeleteNo problem! :-)I'm the same. I'm going to read about your friend's story too! Thanks for sharing!
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