Friday, July 18, 2008

Advocate??

I wasn't sure what to title this post. And I'm not sure if I chose the right word or not?

Just recently, in talking with a lot of CF patients, I realized I am a big advocate for not letting yourself get too sick before considering a transplant. Each CF transplant recipient (and really any transplant recipient for that matter)has his or her own unique surgery and recovery time. It differs greatly between persons, and no one surgery or recovery is exactly alike. They might share some similarities, but it all depends on the patient.

I think one thing that bothers/worries me is when CF patients wait until they are really sick to consider a transplant. I think now, a lot of CF teams (of doctors, etc.) are trying not to do that and they start approaching people before they get too sick. However, that always doesn't happen. And even if it does, it has to be that patient's decision (or the parent/guardian) to move forward with it.

Because I was so so so sick prior to transplant, I had a very hard, rough, and difficult recovery period. And I don't want anyone to have to go through what I went through. It is SO important to be as physically fit and healthy prior to transplant. For CF patients, this can be difficult, and quite frequently, your health status is unpredictable and you may not know when that time will come. And that was my case. I took such a dramatic drop, that I couldn't get back up, and,therefore was physically unable to exercise, etc. So I think it's important for CF patients to start thinking about a transplant before it gets too bad. The healthier you are, the easier recovery you are going to have. Recovery is not an easy thing for anyone, but it can be easier for those who aren't quite as sick. It was about 4 months after my transplant before I could walk on my own again. 4 MONTHS. That was the hardest thing I've ever had to do in my entire life. And to tell you the truth, I didn't think it was possible. And even to this day, I haven't regained all of my strength. And I would give anything not to see others going through what I went through.

Both of these girls are not as sick as I was,(yet) but I don't want them to get to that point. That's why they both need a miracle. And I truly believe in miracles, because I'm one myself. But again, to believe in miracles, I think you (being the patient) have to believe in them yourself and have faith in God to do his wonderful and mighty work. Prayer is a powerful thing, and I've seen the effects of it myself as plain as daylight. I had people all over the world praying for me. And still to this very day (4 yrs post transplant), people still come up to me, who I don't even know, to tell me that they prayed for me during that time, and they still continue to do so as well.

So I guess my point of this post is: If you are a CF patient or know someone who is, etc., don't let yourself get too sick before considering a transplant. Otherwise, your recovery will be more difficult. I've told parents of young children before, that it never hurts to be prepared and maybe look into it, even if it is too early to consider. You can always turn away lungs. But like this one girl who's been waiting for 2 years, you just never know how long it's going to take to get lungs, and you never know when that time might come. It's totally unpredictable. And just to sum up the post....FAITH in GOD plays a huge role in this. In my opinion, I don't think anyone could go through a transplant and not have faith in God. I'm sure it's happened before, but it's so much better and easier knowing God is taking care of you.

2 comments:

Alicia said...

I love my Savior, Jesus Christ, and I have a 2 year old daughter with CF. I love your blog. This post was so good to read. I'm still learning so much about all this, so please explain a little bit to me. Is there a concrete "line" so to speak that you have to fall beneath to qualify for transplant? Or does every dr do it differently?

Jennifer said...

This is a good point. I think the other reason I'd go earlier is, I went at 40% lung function to start testing. I had to do several full days of testing, walking around the hospital to get to different appointments. I was so worn out on those days, I have no idea how those with lower lung function do it.