I receive the CF Roundtable, a newsletter put on by CF adults, for CF adults. The newsletter is quarterly and always has a specific "focus" topic that most, if not all, the articles relate to. Some of the articles in the CF Roundtable have no interest to me whatsoever--for instance, I hardly ever read the insurance section because frankly, it goes over my head right now. I cannot always relate to the focus topics, either, because the newsletter is for CF adults of ALL ages, not just adults in their 20s. Now, I'm not complaining about that. In fact, I think it's wonderful that I cannot relate to everything the newsletter prints. That means that CF patients are living longer and having more problems related to age, not just related to CF! I can also learn a lot about growing older with CF by reading the wise words of my fellow CFers, even if I cannot relate to their stories at the present time.
This fall's newsletter focuses on lung transplant. I am nowhere near ready for a transplant. My PFTs are steadily hanging around 60%, and I'm still able to fight off lung infections with some spunk. However, reading about transplant makes me think about what it must be like. I've heard it said many times that having a transplant is like taking one set of problems and trading it in for another. Instead of having crappy lungs and oxygen tanks to carry around, you have a non-existant immune system and a handful of transplant medicine to take. Transplant recipients often don't know how to deal with the fact that their donor had to die in order for them to receive new lungs and may carry around some intense guilt. In addition, a person could be on the transplant list for years and year, just waiting to get "the call", never knowing when it's going to come in. Yet everyone I've heard from who has received a transplant would make that same decision again in a second. Transplant recipients feel like they have been given a second chance at life, an opportunity to do things they have never been able to do before. Lung transplant is not a cure, and CF patients cannot set their expectations too high when they receive new lungs. I think Piper Beatty, who has received a lung transplant, put it best when she explained what CFers receiving new lungs should expect:
Expect beauty.
Expect obstacles.
Expect to be happy.
Expect to shed tears.
Expect to learn lessons, some of them hard.
Expect to have to push yourself. Expect the best out of everyone around you – including yourself.
Expect the unexpected.
Or, in other words, expect LIFE.
Hopefully, I will never be sick enough to need a transplant. I'm praying for a cure to come before that time comes!! If it doesn't, though, and I end up being put on the transplant list, I will tackle the challenge and obstacles transplant causes head-on, continuing to live my life abundantly and joyful.
Expect obstacles.
Expect to be happy.
Expect to shed tears.
Expect to learn lessons, some of them hard.
Expect to have to push yourself. Expect the best out of everyone around you – including yourself.
Expect the unexpected.
Or, in other words, expect LIFE.
Hopefully, I will never be sick enough to need a transplant. I'm praying for a cure to come before that time comes!! If it doesn't, though, and I end up being put on the transplant list, I will tackle the challenge and obstacles transplant causes head-on, continuing to live my life abundantly and joyful.
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