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

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

    I've been on the transplant list almost 5 years....and am on the fence...."do I really want it?". I want to know, if people have had regrets, how many medications are you on now, how long have you had the transplant, would you do it again. I've known that I would need dialysis/transplant for over 5 1/2 years, but only have been on dialysis for 18 months. I'm 62, female, single,still working full time and get treatment at the center. I treat my time there as working a part time job. My indecision is that I know how I feel now, which is good, and if I got the transplant, I don't want to go back to dialysis. I have a good attitude about dialysis, but my opinion about the transplant was different at age 56 than now at 62. Wanting to hear your feedback. Thanks!

  • Myrtler
    replied
    Hi . I transplanted February 6, 2019. A young friend of mine gracious gave me a kidney. It has truly been life changing. I was on dialysis almost 6 years and started dialysis at age 42. Dialysis was ok in the beginning but my last 2 1/2 years were very difficult. I too was afraid to get the transplant because you hear mixed stories, however, it was worth it all. I am feeling like my old self again. I now pass my old dialysis center to workout at the gym! I now keep my weight down, exercise, eating healthier and keep myself spirituality strong. All that helps the healing process. I am now living my best life and I’m ever so grateful!

    Leave a comment:


  • Billman13
    replied
    Hello all. I've been reading these posts in preparation for a transplant. I've been on dialysis for almost 3 years and will be 60 next month. I started with hemo 3x a week and switched to PD just over 2 years ago. I work full time and am active (or was) in theatre. The treatments have put a damper on that for now. A friend of my sister's graciously offered to donate when she found out my situation. I was floored. She's currently moving through the battery of tests to make sure she and her kidney are healthy enough. We already know she's a match. The waiting/anticipation is killing me. I know that all will be well soon and I can get my life back.
    Thanks to everyone who has responded here. You've been very encouraging. Good health to all.
    Never give up! Never Surrender!

    Leave a comment:


  • awsurfaces
    replied
    Transplanted Dec 20 2017. I am very happy with my new kidney. It came from a young friend that fell asleep in death almost 3000 miles away. It is still hard for me to fathom how his parents (also close friends) literally thought of this possibility even before a doctor or nurse asked what they might want. At the time I was unaware they even knew I was on the list. My family never spoke of it to them and when there son last came to visit we never mentioned it to him. I am now 7 months post transplant and labs are great! I personally am still challenged by all that has taken place but grateful god has turned a tragedy into something good. We have drawn even closer to the donor family all of them, aunt, uncle, cousins and grand parents. The uncle who lives here flew to the East coast and helped care for the family during the procurement and flew here to the West coast for the transplant. Adjusting to the new normal is difficult but I can say I am Very, Very Happy.

    Leave a comment:


  • kcramer
    replied
    HI, I had my transplant a year and 8 months ago. I am doing very well with the one live kidney working at GFR 84-88. After my transplant I told the doctor that my skin color made me think I was jaundice. He laughed and said that my coloring was very good and I probably did not see this good healthy look for a long time. He was right.
    Even now people will tell me how good I look. I praise God for such quality of life. Dialysis was hard on me as with others. I had so many surgeries on my fistula arm in three years. It failed two times where I had a catheter placed in the chest. The last catheter was taken out after the transplant after being in for 6 months. I did have a hernia (and surgery) this year and am doing fine since March. I have been told not to exercise more than just walking and doing things around the house. I am active although the bone density problem limits how much walking I do. That is an affect from dialysis and old age. I received my new kidney when I was 69. My family and friends are so grateful to my donor as am I. Best of luck.

    Leave a comment:


  • amtrammell
    replied
    I am 8 months post transplant and I can tell you that the change is amazing! I can do things I only dreamed of doing throughout this journey. My son noticed a difference within 2 days. My friends noticed a difference in coloring 2 hours after transplant. Yes, it is still meds and doctors, but the quality of living is so far above anything I have experienced since I was tiny.

    Leave a comment:


  • maddie04
    replied
    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.

    Leave a comment:


  • Kaiserwillie
    replied
    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.

    Leave a comment:


  • jnusserg
    replied
    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.

    Leave a comment:


  • aiyuna1
    replied
    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!)

    Leave a comment:


  • Ckkkbaker
    replied
    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.

    Leave a comment:


  • Kaiserwillie
    replied
    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.

    Leave a comment:


  • stumpr54
    replied
    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.

    Leave a comment:


  • frandes
    replied
    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.)

    Leave a comment:


  • chrismk
    replied
    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.

    Leave a comment:

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