Tuesday, July 22, 2008

Transplants (TX)

While I am not close to needing a tx I thought I would blog about it anyway. It is something I think about often, mainly so when the time comes I won't have to do as much thinking.

To be honest the whole idea of having my chest cavity opened and the old nasty CF lungs removed and replaced and with semi-new and healthy lungs scares the living crap outta me. The procedure alone is enough to make grown women cry, such as myself. Then I think about the afterwards. All the tubes, all the meds (yeah I should be used to meds I know), all the hours of rehab. It just makes me want to say "no" to a tx.

Then I think of all those things I missed out on in my CF life. Running without coughing, laughing without coughing, sex without coughing, a full day/week/month without coughing. Those things make the bad seem small. They make me want the tx. They make me want to jump up and down and say "God please take these old crappy lungs now and let me have new ones".

It may seem silly to some to constantly think about recieving a transplant, but when you struggle to make it to the top of your steps in your apartment, or you wake up with a coughing fit at 3am it doesn't seem so silly. For instance, right now as I am writing this I am half bent over in pain. Most likely it is a deep down plug in my lung that will come out with some extra poundings and 3% saline inhaled. But I could have this pain for days, or just hours. It's that uncertainty that makes this so hard/easy.

Quite a contradiction I know. But thats the thing. I want the uncertainty of CF to be gone, I want the pain, the coughing, the hours of treatments a day to end. But with that ending comes the uncertainty of transplant. The fear of rejection, the fear of catching a cold and developing an infection.

I know we can't live in fear, that fear keeps us secluded and doesn't let us LIVE. But sometimes it is easier to live in fear. To not worry about all that uncertainty. To not wonder if the pain from the surgery is going to be unbearable. I think that alone is my biggest fear. I worry about the pain. I'm not good with pain. Sure I have tattoos and have piercings but that isn't the same. They aren't deep inside the body, they are just surface pains. I get headaches constantly but that is remedied with Excedrin. The pain from tx can't be dispersed so easily.

Then I worry about paying for it. It is not a small expense. Luckily I have already decided that if I want a tx that I will go to HUP for it. Penn is a great hospital and my CF doctor is part of it and it is only 25 minutes from my home. There will be no relocation expenses. That alone is a huge burden, that luckily I can avoid. Will medicare cover it? Will the state and country help pay for it? Will I have to scrounge around to find hundreds of thousands of dollars to pay for it?

I guess when the time comes I can look into myself and see if I am prepared for more fighting or if I have fought as long as I can. That will be the biggest factor I am sure. If I am ready to hang up the gloves and let CF take me or if I want to keep fighting and hope that I get a few more great years out of it.


  1. There seems, as an outsider looking in, to be lots of peer pressure both ways. There are many reasons to have a tx, and many not to. I do not want to push my religious beliefs on you at all, but I will risk saying that none of us knows what is above and beyond this earth. We may believe in God or not. Is my life great? No, not all the time. Do I fear death? Not really. I fear the process, but not the afterlife itself. But life here on earth for me is too good not to fight, if indeed I ever need to fight for my life.

    I think I'm rambling, but I respect both opposing arguments on the issue. I just can't wrap my mind around eternity, and wouldn't ever want to do something to speed my walk towards eternity. We just don't know what's above and beyond, and therefore we don't know if it's any better than our earthly life.

    I certainly respect you hugely for contemplating a weighty issue, though. Get enjoyment out of the rest of today, though.



  2. You hit the nail on the head. I am not afraid of death itself, I am afraid of the dying process. The pain and suffering that usually entails.

    Your reasons are what make the decsion so difficult. I am torn between feeling "normal" and just lettiing myself go. Alas, the dam sign of the Libra is showing itself in my blog. Seeing both sides of the argument...never easy!!! =)

  3. Excellent post Amy. I hope you don't have to have a transplant for many, many years to come!!! Maybe there will be a cure before that!
    I'm glad I found your blog via cf2chat.