Wednesday, September 19, 2012

Lung Transplant in my future??

There was a time in my life when I was maybe 16 or 17 that I had decided I would never get a lung transplant. 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 chance to maybe live a few years longer. It didn't seem worth it to me at the time.

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 do everything in my power to stay alive to be here for my son. 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 new 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!

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.

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 UNOS 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.

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. https://services.sos.state.mi.us/OrganDonor/Registry.aspx 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.

1 comment:

  1. You have posted some very wise information. . .when I was faced with the reality of a lung transplant and when I really searched it out and thought it out and weighed the risks I came to the same conclusion you have. You are right it is an exchange of one 'disease for another' but if you don't take the risk then CF has a final fate waiting. . . at least a transplant offers hope and despite the hard times, the good times are worth it.

    I used to watch my husband breath at night and I honestly wondered what it felt like for him. . .he tried to explain but I wanted to experience it for myself. Today and for the last 4+ years I have and it feels good.

    Best wishes!!!

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