Ok, so I talked to USC and will be starting the evaluation process for transplant. (they have to verify my insurance will cover the tx and the prescriptions afterwards, before I can go in) Just typing that sentence is making me tear up again. I don't want to be sick. I don't want to have a transplant. I want to run up the street, and go skiing, and dance till I drip with sweat. Is that really so much?
If they say I qualify for a transplant, that they think it's time, what do I do? I know I still have a choice, but I don't feel like I do. I feel like I'm being led down a path that I don't want to take.
I just want to be ok now.
At my last visit with the CF doc's I got the one that feels like it's very close to time that I have a transplant if I'm going to. He tells me I'm very sick. (my words, not his) He tells me with all that he knows about me I will definitely qualify. But he tells me that I have to think about if I really want to live at all costs, because it is at all costs. It is very hard, painful, life altering, a new life long condition and possible death or a life that is worse than what I have now. He barely mentioned the upside as he doesn't seem to see it happen too often, or not for long. This is a doctor that I so respect and like, he's been a CF doc for about 30 years. He just lost a patient that was 29, and he said they started seeing her when she was 6 months old. He and the nurse were so sad. But I digress...
And then again we're back to what keeps going thru my brain. I like my life now. Things are getting harder. I get tired easier. I do less. But I'm fine with that...sometimes not...but ok enough that if it just would stay this way I'd be ok. Will it just stay this way? Do I risk it all? Do I risk hurting those I love or is not risking it risking it? I know I go over and over this, but it all seems so impossible. I don't want to wait too long, like my friend Katie, or Catharine. But I know so many whose transplant didn't work out for one reason or another.
I told someone recently that I have to take my oxygen with me when I go to the gym and she just laughed. You do? I felt sad that she laughed, it truly isn't funny. It's hard and embarrassing. I haven't even gone in probably a year or more because of it. I need to get in shape in case I do or don't have a transplant...if I don't I need to do what I can to be stronger. If I do, it's easier to recover from the surgery if you're stronger going in. I'm so weak it's pathetic.
All this began because of my anger and sadness over another bleed on Saturday night. It was small, but I'm so sick of it. This, after the discussion with my doctor has made me want to just stay in bed till it's over. Let someone else decide. Where the heck is my fairy godmother?
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8 comments:
Tell that lazy husband of yours to get off the computer and go with you to the frigin gym three times a week. If he gives you any grief about it let me know and I'll come over and put things right.
#1Fan
Carol,
I can't imagine having to make this kind of decision. I know you'll do the right thing for you. I do, however, have an exercise video which might help improve your stamina. It's not too strenuous. Just a thought.
Cousin Merle
You have the information, you know the facts, you trust your doctor, but you have to do what's right for you. I can't imagine making the decision, but you do have the choice of having the transplant when you are feeling strong and ready and not as an emergency procedure that you won't have any control over. I hope that other people with CF can give you encouragement and information because they know what you are going through better than we do, we can only love you and be there when you need us.
Carrie
Carol,
Call me if you feel like talking. I know how f***ing scary it is to hear the "T" word.
BIG HUGS to you my friend,
Debbie
This is all so immense -- I pray for your "peaceful places"; that you can go there to gain a calm perspective as you consider what the next life-affirming step might be.
I wish there were no need for these big decisions ... It's so much more than most of us ever have to grapple with. Love you, Kim
Miss Carol,
Wishing things were better for you, both in body and spirit. I know things are down and this is hard but try to look to the positive (like all of us and Kelly, and Kitty and..hee-hee). You don't have to decide today, but soon. Perhaps get another opinion? It is good sometimes to talk to both your pre and post transplant doc who will care for you and also the surgeon as they all may be different. They perhaps will give you different perspectives.
Oh yeah, and get your ass in shape, you know how important that is!! Just kidding, I know you know how much to push and when to pace and the importance of both.
Sending love from Oregon.
XOXO
Cousin Kim
I am here any time you want to talk or just let go....transplant is a scary step....it is like crossing over into the unknown. And Carol if you go this route, I will pray that yours turns out like Tara's...who is now 7.5 years post-tx.
Love & Hugs
Cloyce
stumbled across your blog when browsing, I am on the Transplant list in the UK, different system here (and much worse donor shortage) but the dialemma of "do I" and if so "when" rings so true. I really feel for you, if you want to get in touch just contact me on my guestbook and I will email you. Very best warm wishes.
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