What is most on my mind is transplant. Should I have one, should I not have one, when is too soon, when is too late. This is the most difficult question I have ever had to grapple with. If I continue to lose ground like now it will come sooner rather than later. If I keep bleeding and the surgeries don't help me, it will be sooner rather than later. But when is that? While I was in the hospital I spoke with one of my doc's and he said with my PFT's the life expectancy is 3 to 5 years. With a transplant, the life expectancy is 3 to 5 years. So at this point, why would I trade my 3 to 5 with everything a "known" entity for 3 to 5 "unknown" possibly deadly years? But if I wait too long and am too weak to have the transplant, I have signed my own death warrant. I could go back and forth for days.
The doctor told me of one patient who is quite a bit worse off than I am. He has been living for 10 years with numbers less than mine. Then the doctor made a comment, "thank goodness he didn't have a transplant." Implying that he wouldn't have been alive as long. How do I internalize that information and make it my own? That I should wait at all costs? That transplant is too risky? Or will I be one of the ones that waits too long and doesn't make it off the table or only lives a few months? I've known so very many of those people. More than I can count.
The bottom line is I don't want to ever, ever, ever have a transplant. I am absolutely positive it will kill me. Don't ask me why I feel this way, I just do. When I had the embolizations I had no hesitation, no fear, I knew all would be well with me. Now an embolization is no way near as difficult as a transplant, but there are some really bad side effects like stroke or paralysis . But I knew that would not happen to me. Again, don't ask why, but I just knew.
But the fact is, I will have a transplant. I'm not sure when but I will. I'm not ready to die. If I continue to get worse or continue to bleed I will. I will soon be starting to make the appts. to have consultations to get the transplant doctors advice. I guess I need to get scored, so I know how I fair. ( The allocation for transplant goes by a score, the person with the highest score is the worst off and receives lungs first if they fit the person.) Sometimes what the doctors think is really a slap on the face and I don't realize how bad I am. When I have to fill out forms and it says how is your general health, I always hesitate, I don't know whether to put fair or sick? I feel fine most of the time. I don't hurt, I don't gasp for breath, ok, unless I'm trying to walk and talk. But I think I'm fine. Hmmm.
So for all those that have asked, I will have a transplant. I have to somehow get my head to believe it won't kill me. I don't know how to get there. I want things to just stay how they are. Not how I feel today exactly, but how I was before all this bleeding junk and pneumonia. I was just fine. If I can get healthy again, I would love to be the person who has waited 10 years and thank goodness she didn't have a transplant. But who knows. If there is anyone with some wise advice, I'll take it!
On a little up beat, thank you to my friend Cheryl who made us a pot roast dinner yesterday. It is so good. I had it last night and tonite! I want to know where he gets the meat. Mine is never so tender! Thank you from the bottom of my heart!
Ok, that's all. Off to do more thinking. My head hurts.
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4 comments:
Hi! I love you lots! I check in every couple of days to read what's going on. Take care and know I'm sending good thoughts and prayers your way.
Love ya,
Joyce
Well I'm in the passenger seat on this one. All I can say is I'm committed to walking with you, one day at a time...
#1Fan
Carol, I know when you have to make critical choices, you really do make them. You just are worried that you don't know if you are making the RIGHT CHOICE here. You know yourself better than anybody, and in this instance, nobody can make this choice but you. I know there is an inner voice telling you loud and clear which choice to make. I could tell that by reading this blog. Listen, listen.
Cousin Merle
Dear Carol,
We're all thinking of you, as you contemplate what to do next (and when) ... These are very big questions, concerns and decisions to be sure. (If only it were otherwise!) As you "sit with" the uncertainty for a little while, I trust that the clarity (and peace) you're looking for will come to your open (and maybe trembling)mind and heart. I'm going to encourage you to visualize and go to your soul's most beautiful,peaceful places. Then let everything "just be" for a few moments. While you're "there," let the prayers, well-wishes and hopes of all who love you surround you with warmth, strength and courage. We're there with you now, and we'll continue to stay as long as you wish. We're only a thought away!
Love always, Kim
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