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Is anyone afraid of a kidney transplant?

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  • Is anyone afraid of a kidney transplant?

    I know that I need it, but the concept scares the Hell out of me. I'm having dificulty accepting that I really have to have one. Any thoughts out there? What are you feeling?

  • #2
    Re: Is anyone afraid of a kidney transplant?

    Hi Flowergirl. Transplant is a very scary thing and a big decision. I think it's one that each person must make for themselves. My spouse is a dialysis patient and he has so far opted not to get on the list. He feels like the risks are too great and the benefits are iffy. He has talked with a number of transplant patients that are on their 2nd or 3rd kidney or are currently back on dialysis while waiting for another kidney to become available. He also has gone through the evaluation for transplant. He does not like the idea of a life taking anti-rejection drugs and/or steroids. He also does not like the odds of success/failure. So he has decided not to attempt a transplant.

    But we also know a transplant patient who is now 8 years post transplant and doing well. He does not seem to mind the drugs though he said the steriod treatment that he went through for the first few months was not fun. He is able to work and lives the life he had prior to his renal failure from PKD.

    So with all that said, do the research you feel necessary to make your decision. Remember, you can get on the list and opt out of a transplant when offered without losing your place on the list.

    I hope that helps you. There are many members out there that I'm sure will chime in and try to help also.
    "Life isn't about waiting for the storm to pass...
    It's about learning to dance in the rain. "


    • #3
      Re: Is anyone afraid of a kidney transplant?

      I've never been on a table so I don't look forward to any surgery. As looneytunes has mentioned each person has to decide what's best for them. I'm 45 in stage 3 CKD and I'm trying to do all I can to never have to make that choice. Reality is at some point I will have to decide on a treatment. My biggest concern with dialysis is being fatigued and not being able to run my business. Not only does it support families it supports my health insurance. Losing the ability to work makes things harder then they already are for me.
      Stage 3 (GFR 35) & Diabetes.


      • #4
        Re: Is anyone afraid of a kidney transplant?

        Hello flowergirl,loonytunes,and TRB.
        I thought that I would add my two cents in here. My kidneys failed about 15 months ago. I was in the hospital for three weeks getting some grafts put in and a catheter put in my chest I was one sick puppy for about three months until the dialysis started getting the excess fluids removed and all of the poisons that I accumulated for two years. The Neph refused to sign my back to work slip and so I had to resign the lead man position THAT I HELD FOR 15 years. Well I resigned my job that I had for 21 years same place and I was plenty mad about that for awhile and then I started thinking that I really wasn't doing that well for the past 6 months that I was working and the way the economy has been going I might have been fired. I was seeing the hand writing on the wall. Now I am retired and drawing SS. and I am starting to enjoy life more. Medicare is taking care of the dialysis but for how long who knows. I am praying to my God that he will take care of me. He promises to take care of our needs.
        WE have a piano in the house. The kids had lessons on it 25-30 years ago. about two months ago I lifted the lid over the keys and started playing and I found out that I could play by ear and memory about 10 hymns that I have learned over the years at church and after I polished up on about two of those songs, I found that I could sing those two hymns. One song is "Come Thou Fount of Every Blessing" And the other one is "Blessed assurance, Jesus is mine". Now don't think that I am losing it, but I am getting a real blessing out of singing those two songs and playing the piano.
        I was in the hospital about three weeks ago having a quintan catheter put in and the next day having a fistula gram done and a thrombectomy and a angioplasty done to repair a collapsed vein and a stent put in the vein after they expanded it again. So that makes it 12 surgerys done to the same arm to either put in a first and a second graft or repair graft #1 and #2 and then a year ago I was in the same hospital with a blood infection because of an infected catheter. This year has not been a fun time. I am on the transplant list with Cedar- Sinai medical clinic and I have a live donor. I am looking forward to this transplant. After what has gone on for the past 15 months, I am thinking do I want a repeat of more troubles with the graft or do I want to try for this transplant. OH that surgery that I was just telling you about , I was wide awake on the table and the arm was wide awake too. talk about the pain OH MY GOSH, You wouldn't think that angioplasty would cause that much pain while they are blowing up a collapsed vein. You learn to pray fast. Ok I have gabbed long enough. take care and God Bless.


        • #5
          Re: Is anyone afraid of a kidney transplant?

          Originally posted by flowergirl View Post
          I know that I need it, but the concept scares the Hell out of me. I'm having dificulty accepting that I really have to have one. Any thoughts out there? What are you feeling?
          I hear you, Flowergirl..

          We just learned that my husband is a match. He seems to think "tossing a kidney" in me is no big deal, but I worry a lot about his health. So, I have put him off for now.

          This is a very personal decision. No one decision is right for everyone.

          Remember, transplant is just another treatment option, not a cure.

          Good luck with your decision making!
          Diagnosed Stage 2 CKD (lupus) 1985
          PD March 2009-present
          On Transplant List
          Husband is a match (undecided about that for now)


          • #6
            Re: Is anyone afraid of a kidney transplant?

            I have had 2 kidney transplants. The first one was easy and I didn't even really think about it as I was 16 and my family around me, but the 2nd time around I was on the list but put myself on hold one year til I got things in my life together. Then I got my transplant Sept 30th 2007. It didn't go like the first one. It didn't work right away. It was scary. I gained 22 lbs in fluid and I had to still do dialysis until Nov 14th 2007! But I am off dialysis now and doing well with my 2nd transplant.

            My point? It is normal to be scared because there are risks with ANY surgery. Get as much of the facts as you can, and don't be afraid to ask questions! That is the only way to alleviate any fears!
            Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
            I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
            • Peritoneal Dialysis = 4 yrs
            • Hemo Dialysis (in center) = 2 yrs
            • 2 kidney transplants = 1990 - 2001 & 2007 to present


            • #7
              Re: Is anyone afraid of a kidney transplant?

              Dear Flowergirl,

              Like Angie, I've also had 2 transplants. The first surgery went well, but it failed after five years from the same disease as my native kidneys. My brother was a perfect match, but it did seem a bit creepy to hav someone else's kidney.
              My last transplant was in April from my husband and did not begin to function right away. After 3 days it perked up and is working well. I had two spins through dialysis while waiting for it to wake up. Surgery was easier than dialysis because I was unconsious
              I have been able to work full time (I teach middle school) and do everything I normally would. The medications have some effects but are managed with other meds. The hardest part is remembering to take them. I have alarms on my cell phone.
              Both of my donors are doing well, and possibly healthier than before. My brother quit smoking and my husband lost needed weight. They both seem to better appreciate their health after recovering from surgery.
              I don't mean to minimize a major surgery, but I spend very little time each day thinking about being a transplant patient. This worked for me.
              I remember when I first considered dialysis or transplant, I thought my whole life had to change and it was a scary time. Learn all you can and talk to many people while making your decision. Knowing will really help.

              Best wishes,
              Diagnosed FSGS 1998
              Related Transplant 2004
              Unrelated Transplant 2009


              • #8
                Re: Is anyone afraid of a kidney transplant?

                I think the real answer is "who wouldn't be afraid"! I have had a live donor step forward for me. Her workup date is 9/24. After reading so much about home hemo and home PD, I was for sure I would end up on dialysis by now - I'm down to 10% GFR. But as lectropet mentioned, the Good Lord always likes to throw in a few monkey wrenches from time to time to see how you're gonna respond. I pray every night to the Holy Mother of God that she will take me in her arms, hold me, comfort me and give me wisdom to understand whatever is given back to me.

                I know for one thing is that I had no intentions of losing my job or not working full-time ever again. I refuse to lose to the enemy and that enemy is LOST HOPE. To me, looking at a transplant is hope in living life BETTER than dialysis. I have no idea how it will be or even if my live donor will make the grade, but I pray hard every night and so far I have the strength to carry on with my cross (CKD) and I am so blessed to be able to do what I am doing at this stage (working 40 hours, going to school, taking care of 2 elder parents).

                Good luck in your decision. Remember to live life to the fullest, no matter what your decision should be.


                • #9
                  Re: Is anyone afraid of a kidney transplant?


                  I was on dialysis for a year and half, and got my kidney transplant 4 weeks ago at UNC in Chapel Hill. I am 43 and I received my transplant from my wife. The surgery was not a piece of cake, I think the older you are, the harder it is. The heavier you are, the harder it is. I think it was alittle harder on me because dialysis had kinda took it out of me. But evey thing went well for me and my wife but just be prepared for tough 2 or 3 weeks afterwards. But it is well worth it. Just pray alot and everything will be fine.


                  • #10
                    Re: Is anyone afraid of a kidney transplant?

                    Hey Everyone:
                    Im "string_man62" a.k.a Ron
                    I am the newbie in town.

                    Flowergirl, let me tell ya, I agree w/ everyone here yeah the thought of getting a transplant is a


                    • #11
                      Re: Is anyone afraid of a kidney transplant?

                      Sorry everyone like I said Im the newbie in town.
                      Flowergirl....... I agree w/ everyone in here. A transplant is a big step & is SCARY as h3ll
                      but it sure beats dialysis.
                      Ive had 2 transplants in the last 10 yrs.
                      The 1st I lost in about a yr & a half cause of wrong dosages on medications. the 2nd lasted 8 yrs and only lost it cause of having a heart attack in Jan 08.

                      To make a long story short ... any tests pertaining to kidneys or tranplants Ive been there & done that.

                      Anyone/everyone feel free to message me w/ any ???
                      I will be happy to help any way possible.





                      • #12
                        Re: Is anyone afraid of a kidney transplant?

                        yeh i'm really scared about the thought of a transplant. in Oz you aren't eligable for the cadaver donor list until you are on dialysis. My brother is deceased, sister has hisgh blood pressure as does my mum, dad on only had one kidney and hubby has other issues so really cadaver is my only option. I also have a young son so i'm petrified he'll bring home mumps or something and i'll get sick. right now while i'm on dialysis my immune system is as strong as ever, i rarely get viruses.

                        also i feel kind of bad wishing for a kidney becuase it means that someone has to die for me to get it. i know it's stupid, they would have died anyway so medical science is only taking advantage of their goodwill. but i can't help feeling like i'm willing a stranger to die for me.

                        but also i'm worried that i'll set myself up for this big life changing event then it wont work or something worse will happen. i worry if i could cope with that, that let down


                        • #13
                          Re: Is anyone afraid of a kidney transplant?

                          When I was 8 yrs old I was put on dialysis and told I needed a kidney transplant. I was scared out of my wits let me tell you! I was on dialysis until I was 15 and 6 of those 7 years I was not on the transplant list because I was scared of it. When I got my transplant at age 15 I was free. For the first time in my life I was normal to do what I wanted and to be a regular teen. It was the best thing to ever happen to me. It lasted until I was 25. I went back on dialysis and have been every since then i'm 33. The first thing I did when my transplant died was get relisted. I have antibody problems now from the previous transplant and a few blood tranfusions which is causing me to not match and so i'm waiting. Come on transplant!


                          • #14
                            Re: Is anyone afraid of a kidney transplant?

                            I am also a transplant patient and I honestly am not sure that I would do it again. I do agree that I do have freedom that I didn't have while on dialysis but that is probably the only positive thing I've experienced. There are several things to think about and some I wasn't aware of when I was transplanted. The medications are toxic and you have to constantly be aware of the possibility of skin cancer. I have to be evaluated several times a year for that and as I write am worried about an odd mole that has appeared. Insurance helps with the medications but my deductible just doubled on my prograf. Fortunately there is a generic available but will there be a generic for myfortic when that copay doubles? I am on a steroid protocol and my bones are rapidly failing. Medicare lasted only 3 years after the transplant and my visits to the transplant hosp for evaluations cost $1,700 every 3 months. I vary on my visits from 3-6 months. We have Blue Cross/Blue Shield. Absolutely stinks! I could only stay on disability until I was re-evaluated and they do reevaluate. I now have to work full-time to pay for the hospital visits. I also did extremely well on dialysis and did the transplant because my family thought I should. I don't regret everything and this isn't meant to sway one way or the other. What I am saying is be aware of all involved with a transplant. There is a downside. It isn't all fun and laughter. I sometimes feel that I traded one problem for another. I've spoken to many others who were afraid to speak these things. We usually hear only the positive things. I am thankful for what I have received and praise God everyday but ....
                            "Within every adversity lies a slumbering possibility"
                            Tx: 7/28/2005
                            St. Louis University Hospital


                            • #15
                              Re: Is anyone afraid of a kidney transplant?

                              Wow, you all make me feel like I am not alone with my feelings on transplants.... I have decided to just get on the list (which I finally am) and take whatever happens as it comes and not worry too much about it. It is very good to be an informed patient and I am very interested in what everyone else goes through. It really does help me get through this journey and I think you all are great, brave, strong people!!!

                              Patty Lewis
                              Stage 5 CKD
                              PD Dialysis since Dec 2009
                              On transplant list July 15, 2011
                              patty.lewis 19@