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  • Dreading Transplant (kinda long...)

    Hi—I’m new here…finally decided I need to get some support, as I need a kidney transplant soon & am NOT READY for this! I’ve had CKD most of my life (I’m 57) & am lucky that it hasn’t caused major problems; it’s just been a nuisance. But now I need a transplant (GPR=9), and I cannot get past a feeling of dread as I look ahead.

    It’s hard to want a transplant because (1) While I don’t feel great, I don’t feel sick. Just low energy & occasional vomiting, but that’s the extent of it. (2) With some kicking & screaming, I’ve managed to avoid dialysis thus far. So it’s not like a transplant is allowing me to escape dialysis (yet). (3) I also have a lung problem that causes extreme shortness of breath and limits me severely. Because it is unrelated to my kidneys, it will not get better with a transplant. So while I may feel better overall (I hope), I will be just as limited in my activities post-transplant as I currently am. Bummer.

    What I dread most is not the surgery itself but the immediate aftermath (3 mo. or so) and the lifelong difficulties that will follow—med side effects, expenses, fear of infection/rejection, more frequent appts. & hospitalizations, etc.). I know my carefree life will change dramatically, and though I WILL be happy to be alive, things will never be the same. I know this because I had a brain hemorrhage/surgery 9 years ago that, despite an excellent recovery, changed my life permanently.

    It took a year to accept that I must have a transplant. If I had another year to get used to the arrival of the “big day,” I might feel differently. But I don’t have that much time, as the transplant will likely be 1-5 months from now. Am I glad that a transplant is available? Yes! Would I be devastated if this (9th) potential donor is ineligible? Yes! And yes, I am darn glad that I have a means to survive and that someone is willing to donate. I’m actually very lucky in many ways, and I’m not ungrateful. But everything is relative…and from where I sit, it seems as if I’ll be exchanging my current “good-enough” life for one fraught with more difficulties.

    Has anyone else felt like this? How did you handle your feelings, and were things as bad as you’d imagined them to be post-transplant? And is it true that I really won’t feel like myself for 6-9 months? Thank you for whatever help & reassurance you can offer!

  • #2
    Re: Dreading Transplant (kinda long...)

    Hi Skloss, you make alot of valid points . after looking at the "big picture", my decision was to not pursue a transplant. I"m happy where I am, comfortable with PD , but I do have some kidney function left. mabe if mine went to zero, I'd reconsider. will cross that bridge when I get to it
    CAPD (continuous ambulatory peritoneal dialysis)
    since 7/13/07 with 4 exchanges a day
    kidney function improved after 2 years
    presently at 2 exchanges a day :-)
    diabetic, not on insulin

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    • #3
      Re: Dreading Transplant (kinda long...)

      Thanks for your input, Patty. I'm glad to hear that you're happy and doing well with PD!

      Comment


      • #4
        Re: Dreading Transplant (kinda long...)

        Originally posted by skloss View Post

        What I dread most is not the surgery itself but the immediate aftermath (3 mo. or so) and the lifelong difficulties that will follow—med side effects, expenses, fear of infection/rejection, more frequent appts. & hospitalizations, etc.). I know my carefree life will change dramatically, and though I WILL be happy to be alive, things will never be the same. I know this because I had a brain hemorrhage/surgery 9 years ago that, despite an excellent recovery, changed my life permanently.
        How did you handle your feelings, and were things as bad as you’d imagined them to be post-transplant? And is it true that I really won’t feel like myself for 6-9 months? Thank you for whatever help & reassurance you can offer!
        Wow - it's great you are so aware of your feelings, and terrific that you found this forum. My experience has been different than your expectations, and it might be helpful for you to hear my perspective.

        Not to make light of this major event, it hasn't been any more difficult than CKD. I spent a total of 15 nights in a hospital for two transplants, a rejection that was successfully treated, and intolerance to one drug. I was very mobile in the hospital, and drove myself to routine appointments post-surgery after the first few weeks. I avoided crowds for a few months, and went back to teaching middle school. I really don't fear infections or illness. The diet is more flexible than stage IV, but there are a few restrictions. However, it's pretty easy for me to avoid sushi and cleaning the litter box!! I see a neph. every 6 months, and have blood drawn every month.

        I think I felt like myself after a couple weeks. I remember I planted a flat of pansies (gloves, of course!) about 10 days after my first transplant. It took 2 days, but I wanted to do it.

        I guess I'm saying that a positive attitude really helps, and connecting to others who can relate is terrific. I don't think my students and some of my coworkers know I'm a transplant patient, so it doesn't have to run your life. Not everyone has an experience like mine, but I want you to know it doesn't have to change your life negatively.
        Diagnosed FSGS 1998
        Related Transplant 2004
        Unrelated Transplant 2009

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        • #5
          Re: Dreading Transplant (kinda long...)

          Originally posted by Misela View Post
          Wow - it's great you are so aware of your feelings, and terrific that you found this forum. My experience has been different than your expectations, and it might be helpful for you to hear my perspective.

          Not to make light of this major event, it hasn't been any more difficult than CKD. I spent a total of 15 nights in a hospital for two transplants, a rejection that was successfully treated, and intolerance to one drug. I was very mobile in the hospital, and drove myself to routine appointments post-surgery after the first few weeks. I avoided crowds for a few months, and went back to teaching middle school. I really don't fear infections or illness. The diet is more flexible than stage IV, but there are a few restrictions. However, it's pretty easy for me to avoid sushi and cleaning the litter box!! I see a neph. every 6 months, and have blood drawn every month.

          I think I felt like myself after a couple weeks. I remember I planted a flat of pansies (gloves, of course!) about 10 days after my first transplant. It took 2 days, but I wanted to do it.

          I guess I'm saying that a positive attitude really helps, and connecting to others who can relate is terrific. I don't think my students and some of my coworkers know I'm a transplant patient, so it doesn't have to run your life. Not everyone has an experience like mine, but I want you to know it doesn't have to change your life negatively.
          Thank you so much, Misela! You're right...a positive attitude is probably the best "defense"...I'm just having a hard time feeling positive because my "good enough" life makes it difficult to see any real benefits. But your words are encouraging, and that does help me to think a bit more positively. I guess my attitude/fear may also be partially influenced by a friend who just had a tplant in Oct. and still seems not to be doing very well. I've learned from her more of those "after-the-fact" details that they don't tell you about beforehand than is probably good for me. Hearing that you felt pretty decent, drove, and planted pansies relatively quickly (none of which describes her) helps. I know everyone is not the same, and I hope I will be one of those who has few complications. Thank you for sharing your thoughts and experience with me--every little bit of encouragement helps!

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          • #6
            Re: Dreading Transplant (kinda long...)

            Hi Skloss!

            Your post is very honest and I understand the mixed emotions you're feeling. I too felt pretty good during CKD and everyone always commented how well I looked and couldn't believe I was on dialysis needing a transplant. My kidney functions were about 10% when I started PD. I decided to take my neph's advice to start sooner rather than later because it was pretty enevitable that once the functions declined further I would start to feel bad, and the worse off you are before transplant, the more complications after. I did PD for about 9 months and then on Dec 15th 2010 I had my transplant. During the dialysis months I had lots of time to think about the transplant and how it would change my life afterwards. I have to say I really did look at it as a positive and how lucky I was to even have that option. Transplantation is a way to sustain life and help you get back to a "normal" way of living. Of course there are huge changes and adjustments but its all for the better. I'm glad I have to be more conscious of my health. The meds and doctors appointments are a small price to pay for the overall benefits. The enormous gift my sister has given me is a blessing and I would NEVER take that for granted. I think the best way to honor her is to take care of myself the best I can.

            I agree with Misela, a positive attitude is key. It definitely works for me and I'm doing great. My kidney functions are stable and my recovery is coming along nicely. I was in the hospital for 5 days and went home to continue healing. The first 2 weeks were rough - painkillers, difficulty sleeping and eating, not too mobile. I also had a minor rejection scare and had to have a biopsy. It turned out normal with no signs of rejection so my meds were adjusted. After that, the 3rd week was much better and I could feel myself getting stronger everyday. It's been just over 5 weeks now and I've pretty much bounced back. The incision area is a bit tender and sore but other than that I'm out and about. My point is, your life afterwards is what you make it. I don't want to live in fear or look at my treatments as cumbersome. I embrace my new life and appreciate the fact I have healthcare and a wonderful support team around me.

            I wish you luck in your journey and hope you stay well. Please remember that there are others out here who know how you feel and are going through similar experiences, you're not alone. Glad you came to the forum, please keep us posted on your progress

            Gina
            sigpic

            *Systemic Lupus Erythematosus 1995
            *CKD Stage 2 - Lupus Nephritis 2003
            *Peritoneal dialysis April 2010
            *Transplant December 15, 2010 (sister was my donor!)

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            • #7
              Re: Dreading Transplant (kinda long...)

              Originally posted by gavignoni View Post
              Hi Skloss!

              Your post is very honest and I understand the mixed emotions you're feeling. I too felt pretty good during CKD and everyone always commented how well I looked and couldn't believe I was on dialysis needing a transplant. My kidney functions were about 10% when I started PD. I decided to take my neph's advice to start sooner rather than later because it was pretty enevitable that once the functions declined further I would start to feel bad, and the worse off you are before transplant, the more complications after. I did PD for about 9 months and then on Dec 15th 2010 I had my transplant. During the dialysis months I had lots of time to think about the transplant and how it would change my life afterwards. I have to say I really did look at it as a positive and how lucky I was to even have that option. Transplantation is a way to sustain life and help you get back to a "normal" way of living. Of course there are huge changes and adjustments but its all for the better. I'm glad I have to be more conscious of my health. The meds and doctors appointments are a small price to pay for the overall benefits. The enormous gift my sister has given me is a blessing and I would NEVER take that for granted. I think the best way to honor her is to take care of myself the best I can.

              I agree with Misela, a positive attitude is key. It definitely works for me and I'm doing great. My kidney functions are stable and my recovery is coming along nicely. I was in the hospital for 5 days and went home to continue healing. The first 2 weeks were rough - painkillers, difficulty sleeping and eating, not too mobile. I also had a minor rejection scare and had to have a biopsy. It turned out normal with no signs of rejection so my meds were adjusted. After that, the 3rd week was much better and I could feel myself getting stronger everyday. It's been just over 5 weeks now and I've pretty much bounced back. The incision area is a bit tender and sore but other than that I'm out and about. My point is, your life afterwards is what you make it. I don't want to live in fear or look at my treatments as cumbersome. I embrace my new life and appreciate the fact I have healthcare and a wonderful support team around me.

              I wish you luck in your journey and hope you stay well. Please remember that there are others out here who know how you feel and are going through similar experiences, you're not alone. Glad you came to the forum, please keep us posted on your progress

              Gina
              Hi, Gina--

              Thanks so much for your encouragement! I apologize for not replying sooner; somehow, I didn't get a notification from DaVida that I'd had another response so I didn't see it until I just happened to visit the site today. Yes, people say the same thing to me--about how "good" I look. Although some are now noticing and commenting on my weight loss. I've made a decision to do whatever I can to prepare myself mentally so that even though I probably won't look forward to a transplant, at least maybe I won't have such a sense of dread about it. "Mentally preparing" has basically just been a matter of following whatever notions come into my head (since I have no idea how one goes about doing so). One thing that will help a lot is getting the clutter cleaned out of my house--that in itself will do wonders for my general mood and attitude all the way around. Thanks so much for your input--it really helps to hear from those who KNOW!

              Comment


              • #8
                Re: Dreading Transplant (kinda long...)

                I have a very dear friend that has had ckd since he was 13. He is now 19 years old. This last year has brought about some not too great changes for him. He has remained very faithful about low sodium. He has been on prednisone the whole 6 years at differing dosages over that time. About a year ago he was told that he now has very serious osteoporosis. So they are weaning him off but now his potassium, protien,and all the other stuff that the books say you may have to watch out for as the disease progresses have hit him. He weighs 115 pounds and thankfully has no diabetes. All of these potassium etc overloads have come within the last several months. He is not on dialysis. I am wondering what the criteria is for transplant vs dialysis. do you have to be on dial. for a period of time first? What kind of diet differences are there? How well does either work for most people? I am afraid the way the last few months have gone there will need to be some serious decisions made soon. I am sorry if this is not exactly the right place to ask these questions but I figure this is a place to come for support from people that are there. Thank you for any help'

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                • #9
                  Re: Dreading Transplant (kinda long...)

                  Hi, Mumsy--

                  There is no specific criteria between dialysis and transplant, although one cannot go on the transplant list until GFR reaches 20, and people usually go on dialysis when it reaches 15. (That's roughly equal to the percentage of kidney functioning left.) You don't have to go on dialysis first--it's a matter of whether your body will hold up long enough without dialysis before a transplant is possible. It's actually preferable to have a transplant without ever having been on dialysis because the outcome is often better. (Dialysis is very hard on the body.)

                  I spent two months researching and creating a web site in my search for a living donor. So that all the info would be there in one place for people to read without having to search the web, I included just about everything a lay person might ever want to know about transplant (including transplant vs. dialysis). It's in FAQ form and pretty easy to get answers to your questions. Feel free to take a look: suzannesdonorsearch.webnode.com. (Don't forget the second "s" after "suzanne." Good luck to you and your friend!

                  Suzanne

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                  • #10
                    Re: Dreading Transplant (kinda long...)

                    Thank you very much for that link. It has been extremely helpful in answering the transplant questions I had (and the living doner questions).
                    This is supposed to be a relatively slow progressing disease in most cases it seems, but when he began to wean off of prednisone, he has spiraled down it seems like lightning. He is still not off it completely yet. Two weeks ago he said do not even think about transplant It is not gonna happen. This week( after more doctor visits) he said something about transplant being a new "challenge" I believe. I just wanted to have a bit of an understanding what is involved.

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                    • #11
                      Re: Dreading Transplant (kinda long...)

                      You're welcome. I'm glad my site was helpful to you. I certainly can understand your friend's "not gonna happen" statement because I certainly felt that way. Sounds though like perhaps he's realizing that it may have to happen sooner or later. It's a lot to swallow and get used to, especially at only 19 years old. Sounds like he has a good friend in you, and the fact that you're educating yourself will help you be a better support for him. If I can help in any other way, just let me know. Good luck!

                      Suzanne

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                      • #12
                        Re: Dreading Transplant (kinda long...)

                        It is all your decision....my choice is to not have a transplant. I am content with what god gave me. The few people i knew that recieved a transplant are no longer with us and i don't want to be more sick. I made up my mind a long time ago to deal with this disease and i'm still kickin.....i hope you find some contentment within yourself. I will pray for you.
                        MAKE THE BEST OF WHAT YOU GOT, BE HUMBLE AND REMEMBER, IT COULD ALWAYS BE WORSE.

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                        • #13
                          Go for it!
                          Fast recovery.

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