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Wanting to hear from recipients about post kidney transplant.....

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  • #16
    Thanks to all for your insightful feedback!

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    • #17
      Chuyjess wins the award for best answer! lol
      I just had my Tx last Thursday. I was in the hospital for 3 days. I will admit I felt better afterwards but I think I tried to do too much too soon, as I'm now more sore than I was right after the surgery. Even though there are a lot of meds to take, it still feels surreal to not have to take binders all day, etc.
      i

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      • #18
        Originally posted by BryanSaysWhat View Post
        Chuyjess wins the award for best answer! lol
        I just had my Tx last Thursday. I was in the hospital for 3 days. I will admit I felt better afterwards but I think I tried to do too much too soon, as I'm now more sore than I was right after the surgery. Even though there are a lot of meds to take, it still feels surreal to not have to take binders all day, etc.
        i
        Congrats Bryan! I had mine 4 months age and I know how you feel. You will be sore for at least two months, but it will get better each day. I found walking daily really helped. PLEASE though, do take it easy and listen to them about lifting more than 10 lbs, etc. The last thing you need is to get a hernia (sp?). Anyways, I went back to work full time after 9 weeks and have been doing really well. Just rest when tired and take things slowly.

        Best of luck!!!!!

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        • #19
          RE: To echo and add to dac0214's post remarks, kidney transplantation seems the preferred modality for the youth of the CKD population, and for good reason. They are generally healthier and more active and have a lot more living to do that would be markedly burdened by dialysis of any form. The unfortunate reality is that donated kidneys - live or cadaver have limited lives, which leads the recipient back to some form of dialysis and listing for another transplant.

          Each transplanted kidney you receive brings the body's potential development of new antibodies, making futher matching and/or managment through anti-rejection drugs all the more challenging. Certainly all kidney transplant recipients are eternally greatful for the gift, and the personal freedom that it provides.

          It has to be quite mentally challenging to face the failure of a transplanted kidney, and to then re-start dialysis and manage the challenges that it presents. To grow old and pass away from causes unrelated to a successfully transplanted kidney is a most desireable fate, but also one that is rather unlikely. As a result, becoming competent and comfortable with dialysis seems our only recourse until medical science can provide us with a drug to restore our normal kidney function or an artificial kidney or natural kidney that will not require anti-rejection drugs and will last the remainder of our natural lives.




          I agree with what you have said. My dad received a transplant last spring and it failed soon after. He had to go back on dialysis and became severely depressed. He always hated the fact of being on dialysis the rest of his life. Now he is in hospice care. Unless there is a miracle like maybe the transplanted kidney will finally wake up on its own then there is no chance for survival. The peritoneal dialysis and even hemodialysis will not do any good at this point due to his frail state. He is 74 years old and I hope he can at least make it through Christmas time. Our only hope is a Christmas miracle if it is God's will but if not, then I certainly don't want to see him suffer any longer.
          Last edited by WillieB74; 11-15-2013, 07:51 AM.

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          • #20
            A little late to this party, but I will say that for me, transplantation has always been a world of difference. I'm actually on my fourth transplant and I'm being evaluated for a fifth. And while I will not say it is easy - particularly the first year post-transplant - I will say that most transplant recipients I've talked to say they get used to the routine of living with the transplanted organ pretty quickly. The first year is all about healing from the surgery, getting back in shape, getting the meds down to maintenance dosages, and doing a bunch of checkups with your surgical team. This does require some life rearrangement, scheduling, and some inconvenience, but after the first year, most of that drops off and you live pretty much untethered. You just take your meds and go about life. The meds, while slightly annoying in terms of side effects, are not all that troublesome. In most cases, people take less then ten pills twice a day. That may sound like a lot, but it really becomes second nature. And with that, you get a tremendous energy and strength boost, no dietary restrictions, no travel restrictions, and usually vastly improved sleep. It's a fantastic treatment option if you can do it.

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            • #21
              The quality of life really improves many times after a transplant. Yeah, you will be taking medicines every day but thats nothing compared to the alternative. You'd be living as normal as anyone can. If you have the option, I'd highlighly recommend thinking hard before saying no to it.

              First few months after the transplant will be tough, you'd loose a lot of weight, wont be able to walk as quickly etc but should recover within few months and wont be able to thank enough to your donor. You may have to steer away from couple of food items that may interfere with your medications but its better than staying away from 100s of those otherwise.

              Yes, you will loose your hair etc because of medication/anti rejections but thats temporrary and you can get those back. Yes, you will have lot of regular blood work after the transplant but thats to fine tune your medication and once you are at a steady state, once every quarter or six months is fine.

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              • #22
                I'm going to have the mapping of my veins done,And in the mean time going to see a Dr. about a transplant....I have 2 Donors to see if they match
                I really Really don't know if I want it.The more I read the more my head spins......
                .I know I have to do something my GFR is down to 13.

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                • #23
                  Hi, I'm 13 months post kidney transplant and feel wonderful. This follows several months of complications (mostly related to faulty ureters) and multiple trips to the hospital. I will say that in those early months, I often longed for the 4 good days of the week I enjoyed while on dialysis (3.5 years). Now, I'm good. (FYI, I was almost 65 when I got the transplant and can finally say I'd do it again.)

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                  • #24
                    This is a very tough call for me. I''ve been listed with two transplant programs for going on 3-1/2 years and I've been conducting HHD for the past 2 years. My care partner/spouse and I have successfully assimilated the 5X weekly HHD regimen into our busy work and play lives and my health has been as good or even better than before starting HHD. I never got sick or hospitalized, starting HHD training before my PKD reached the point of dialysis as a necessity for life.

                    All the uncertainties associated with hemodialysis have vanished and I'm in a controlled and predictable process. That all potentiallly changes with a transplant. The unknowns of the medication regime and its affect upon me and the new kidney. The unknowns of a major surgery that will hospitalize me for 3 days and keep me off a motorcycle for 3 months along with other temporary lifting restrictions.

                    The benefit of getting about 10 to 15 of the 20 hours per week back that I spend in combined daily and nocturnal dialysis. It's only that many hours because I use the time I would normally be sitting in one place (computer bill paying, email, shopping, TV and DVD watching, reading, listening to music) to dialyze and of course when I sleep, there is only the lost time in machine set up and hook up and end of treatment. The benefit of being able to travel without the logistical challenges of arranging dialysis treatments or transporting my NxStage System1 Cycler and supplies. My HHD regimen has not been a barrier to any aspect of my employment and that would not change up through working to full retirement age.

                    Perhaps my greatest motivator for receiving a kidney transplant would be the desire to take on a new challenge and prevail as we have done with HHD. The sheer boredom that could be associated with the HHD regime might be the determining factor. But much like the service and enhancements I have been performing on the vehicles that I own causes me to hang onto them (forever?), the improvements I continue to find and make in our HHD process, keep the activity fresh and challenging, and I've got a 7th button hole (5 in use) created since March 2013 as evidence of at least one way that I continually improved the process and my treatment flexibility.

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                    • #25
                      I was on the list for a little over 5 years. I'm 50 yrs old and still working. I must say that during the wait I was having second thoughts but dialysis was causing some issues for me and I am glad I went thru with the transplant. At first it can be overwhelming but hang in there and work with your transplant team. I feel so much better and the list of meds will decrease after a few months. I wonder about how long my graft will last but if you follow their recommendations you should be ok.

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                      • #26
                        I was transplanted on 5/23/17, I received 2 pediatric kidneys. I was on the fence like you are. I was on dialysis for 6 years and wasnt sure until i got the call. I had 100% antibodies and was a hard match because I have had like 4 blood transfusions. The recovery was painful but was worth it. I would do it again if I had to. Yes, there is a lot of medications but most are anti-rejections drugs and after awhile they will discontinue some of them.

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                        • #27
                          My son was on HHD for 2 years when recently he got a transplant. Unfortunately, the kidney they gave him was a 98% mismatch. That's right, only a 2% match. He was furious when he found out (after the fact). No one told him, and he had not asked, assuming that after all the testing he would get a match. It has been a nightmare for him. In order to keep the kidney he has had to take multiple strong drugs, which are causing damage to the rest of his body, including, now, diabetes! So I would say, go for the transplant, but be sure that the kidney you're getting is a good match.

                          On the other hand, my daughter is on her second transplant. First was cadaver, lasted her about 9 years. This one from a live donor, daughter of a friend, almost perfect match from a young (20+) girl. She's had this one for 17 years. My daughter does incredibly well. She has remodeled a house by herself, put in full living quarters in the basement of another house, cuts wood, landscaped a huge yard (doing all the work herself), makes jewelry, works, rides motorcycles, etc.! So if you get a good match, and take good care of yourself, you can live any kind of life you want to. (Just a warning, however. Due to the anti-rejection drugs she has to take she has suffered more than one cancer, and other problems. But she has overcome!)

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                          • #28
                            So dripper 5 years later, did you decide to get a transplant? I had a kidney /pancreas transplant in 2006. The surgery went well but I ended up getting a stomach infection. I left the hospital one month later with an open stomach wound that I had to pack myself. The wound closed 8 months later. By this time I'd lost my stomach muscle and had back problems. I went back to work one year after my transplant. I had excellent Drs and nurses and coordinators along the way. A good support system at home. Yes there are a lot of meds at first but they soon decreased. I didn't have any side effects from the meds. 8 years later I started having ascites. Fluid filled my abdomen every 10 days to the amount of 10 liters. After 2 years of testing they decided it was my pancreas. I had surgery to remove some scarring and now my pancreas works great. My kidney however was ruined from all the fluid. I started dialysis again in Dec 2015. With everything going on I'd do it again. I could not imagine my life any other way. After the transplant I felt so good. Alive and like God had given me a second chance. I did the best I could, watched what I ate, checked my blood, took my meds and then I started to get challenged with more problems. Who knows what life the future holds. We can do our best through life and keep pushing and living and thriving. That with prayer is about all I can do. If I have the chance for another kidney I'd take it. I'm 42 years old. If you ask some of the others in my dialysis center who are over 65 they would say yes and no. Yes to continue with their freedom and no because someone else could use it more. Like one of the person's posted years ago it all depends on your faith, family, support system and social life. I hope things worked out for your best interest.

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                            • #29
                              i was on the waiting list for a little over 5 years and on hemo for a little over 3. Was having all kinds of issues while on dialysis. I was having second thoughts but when I got the call and was told that they found a 99% match and to get to the hospital ASAP my whole mode changed. It was rough in the beginning but well worth it. I was working full time while on dialysis but it was so hard to come to work on days after treatment. I was on nocturnal dialysis and was allowed to come in 4 hours late on treatment days but I started coming in later and later as time went on. It was taking me longer and longer to recover from treatment. I had gotten to the point where I decided that I was going to stop working after a cross country business trip. The very day day I came back and had informed my employer of my decision I got the call while at treatment. Still didn't believe it was going to happen until I woke up after surgery. The biggest challenge is the medications (side effects) but if you have a good team and communicate with them they can be managed pretty well. At 51 I know I might have to do it again in the furure but its well worth it. Remember dialysis only replaces about 10 percent of your normal kidney function and that horrible cramping is something i'll never forget.

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                              • #30
                                Hi, I have been a transplant recipient since October 14, 2016. I have been doing well with the kidney which was a live transplant from a 36 year old man of a friend of my son. Working anywhere from GFR 84-89% with great numbers with other areas as well.

                                ​The problems I have gone through is a liquid build up under the new kidney a month after surgery ending in another surgery. Then this year in March almost a year and a half later, I had a hernia surgery. I feel very good compared to when I was on dialysis for three years. I don't get sick to my stomach nor do I end up on the floor with low BP after dialysis. But, I have a lot of pain in the low back, legs, ankles and feet. I was wondering if anyone is experiencing any of these. I went to the pain doctor this morning and he was surprised I was not going to a group where other kidney transplant recipients can get support on what to expect.

                                So I am asking for any information on pains after transplants.

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