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  • A bit conflicted about accepting a living donor kidney donation....

    Hi everyone,
    I have polycystic kidney disease and have been doing peritoneal dialysis since July 2014. I'm 42 years old and am married with a 19 year old daughter and 17 year old son. I'm very fortunate to have a co-worker/friend that has volunteered to donate her kidney and has gone through much of the testing, to date, and found to be a fairly good match. All that being said, I'm conflicted about accepting her donation. The way I see it, so long as I can do dialysis and feel fairly good, the risk of surgery, for both of us, far outweighs the potential benefits, for me alone. Does this make sense? When I go to the transplant clinic and express any hesitance about a transplant, I feel as though the nurse thinks I'm "nuts" and when my co-worker spends hours going to appointments, for testing etc., I feel guilty that she's doing all of this when I'm not even certain I want a transplant. On the other hand, I'm scared that I could get to a point where peritoneal dialysis becomes ineffective or I get an infection, or something, preventing me from continuing with it. I already had a leak a few months ago, which, fortunately, only meant I had to cut back to one exchange per day (1 dwell during the night), but it makes it all the more "real" that any little thing could mean PD won't work for me. I would still opt for home hemo, before opting for a transplant, at this point - or, at least, I think so...I guess, mostly, I'm just hoping that someone can tell me I'm not crazy for feeling this way or that someone can share their thoughts/feelings on this topic. I feel as though I'd just like to toss around thoughts/feelings on it, to get my mind a little "straighter" about how I feel about it. Thanks

  • #2
    While not a cure, a transplant will allow you to live a healthier life. I have been on dialysis since October of 2013 and just signed papers Friday to be on the paired exchange program. However, while we feel good now, the longer we are on dialysis, the more the odds of that not being the case I do reallize that not all transplants are successful, in which case you would be where you are at now. And you will no longer have to schedule things around dialysis.

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    • #3
      I have the same conflict. I just cant seem to ask anyone for Kidney donations. I worry that if that donor might get sick later on in life and I have the other kidney and it may put them at greater risk. My doctor gets a little upset at me that I wont even ask. I also do PD every night and I know I really don't want to stay on dialysis if I don't have to.

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      • #4
        Along the same line.... I am not on dialysis "yet". I live alone, without a car so getting to a clinic is difficult. At stage 4 and declining a little with every blood work. I fear surgery, I am terrified of dialysis, and from what I understand, living alone the at home options aren't options for me.

        So what are my options really? Is it too early to start looking for a donor?

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        • #5
          rickster12: I started dialysis the same month. I have heard from others who have had transplants and they encourage me to keep trying. I am physically well accept for the kidney's. I have PKD. The only thing I have noticed is my legs seems to be getting weaker. I just was put on the United Network fro Organ Sharing (UNOS) which is exciting but there are so many on that list waiting. At least it opens up more of a chance to receive a kidney (I think). Three live donors have been rejected so now I just wait. I believe if there is a kidney out there for me, God will supply it. Such security keeps me positive and active. I saw the movie "Do You Believe" in the theater this weekend and it really encouraged me to keep a positive attitude and believe.

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          • #6
            I am a living donor and was diagnosed with stage three CKD 2 years ago. I just want to try and put some minds at ease here. I donated my kidney to a friend in 2007 and diagnosed with CKD in 2013 I asked my Nephrologist if the transplant was a contributing factor to the CKD and she told me no. They are not quite sure what caused mine because I am not diabetic and do not have extremely high blood pressure BUT IT WAS NOT CAUSED BY THE DONATION. Just wanted to make sure you understand that. 😊. Your coworker must be a really good friend because the testing process is long and time consuming before you are approved, so they want to give you the gift of life and you should let them. Living with one kidney is no different than living with two, yes there are some medications that you can no longer take because they are to hard for the kidney but other than that it is no different. Just seeing the improvement with my friend made it all worth it and I would do it again if I could. As long as your coworker continues to live a healthy life style after the surgery they should live a normal life. Sometimes things do happen such as my case but I believe there is a reason for everything that happens.
            NOTE: BEFORE I DONATED MY KIDNEY I WAS AGAINST ORGAN DONATION AND NOW, I AM ONE OF THE BIGGEST ADVOCATES FOR LIVING DONORS.
            Hope this helps put your mind a little at ease with any decision you make.

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            • #7
              Hello Jaydb63,

              I applaud your attitude and would hope it reflects most of those who have donated their kidneys and experience loss of kidney function later in life. While that loss of function can not be attributed to the donation in your case, that is not always the case. The reason for the exhaustive qualification testing that is done for living donors is to expressly prevent a situation where the donation of that kidney leads to some related loss, e.g. remaining kidney function, performance of another organ, etc. Regrettably, there are no guarantees in the donation process, but there are means of risk management.

              It is imperative that living donors are aware of those risks - the first of which are the risks of major surgery. In the not too distant past, medical insurers were able to reject coverage for living donors because they had only one kidney, may have as a result, slightly elevated BUN and creatinine and lower GFR and were considered to have a "pre-existing condition". While the provisions of the Affordable Care Act prevent exclusion of coverage for pre-existing conditions, this does not mean that a significantly higher premium could not be charged, making the insurance far more difficult to afford. I'm sure all of this is covered in discussions with prospective living donors as well as the associated medical risks.
              Last edited by stumpr54; 08-23-2015, 02:42 PM.

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              • #8
                Hi, I just read your post. I understand you may be frightened of the transplant process. Let me put your fears to rest. A year ago 7/9/14, I donated my kidney to my husband. He was on dialysis 3 days a week, 4 hours per session for 19 months. He did not have any underlying disease and they could not diagnose the reasons why his kidneys suddenly failed. You are currently on dialysis. Here are some of the long term effects of dialysis just so you understand what you may expect if you continue dialysis; osteoporosis, broken bones due to a continual loss of calcium, cardiovascular problems including potential heart failure due to the stress that the dialysis process puts on your vascular system, retention of fluids in the pleura (the space between your lungs and the outer lining of the chest) and pneumonia, neuropathy (damage to the nerves), Amyloidosis, should I go on? Oh yes, one more thing, the national average of the life expectancy of dialysis patients is 5 years. With a live donor kidney, the life expectancy is 20-25 years.You are 42. You are young. You deserve a normal life AND you have a live donor!

                Now, let's talk about the transplant process. None of the above are risks to your health anymore. You will no longer have to pump your blood thru a machine all night long, you can drink water and fluids to your heart's content and your new kidney will process it, you no longer run the risk of infection from your PD, your energy levels will return to normal, you can eat almost anything with a very few exceptions, parts of your body will no longer swell because you're retaining fluids, you return to an almost normal life. Do you have to take your medications? Yes. Is that more difficult than going through what you're doing now? No. My husband feels fantastic. He has not felt this great since prior to going into ESRD. Is there a little discomfort for the donor after surgery? Yes, a little. The worst thing is a little cramping from constipation which might require some suppositories - not a big deal.

                If you have a live donor, do not hesitate to move forward with the surgery. It will be the best thing you've ever done in your life. Your donor can not be approved without going through extensive testing to ensure as much as possible that they are not at risk. Donors must be very healthy specimens to pass all the hurdles. Trust me, I know, I've had every part of my body scanned, prodded, poked, explored and tested. If you want to speak with somebody who is a transplant donee, please contact me. My husband will be more than happy to discuss with you all the details of what he went through and how fantastic he feels now. People are literally dying out there waiting for a kidney and you have one. It is better than gold, platinum or diamonds. I hope this gives you a preview.

                My profile is public, if you want to look at it, please feel free and please, get informed. Once you really know the risks on both sides of the coin your hesitation will disappear! Do not listen to the nay-sayers and dooms-dayers. If they have not gone thru the process (and my husband and I have), they do not know as we know what is involved. Any knowledge they have is "book" knowledge which is only a beginning. There will always be those who will want to scare you. Pay no attention to them. They are like Ostriches with their heads in the sand. Don't be like them. Dialysis is a great bridge into the world of transplant. Don't be deluded into thinking that it is a long term solution. It is only a band-aid for a body that is lacking major organ function.

                There is a better solution out there for you. I don't know where you live, but if you are close to Wisconsin, please check out the University of Wisconsin. They are ranked 5th in the nation for this type of surgery and they are a National Clinical Laboratory. They are tops in their field. We had an excellent experience with them and continue to do all our follow up with them.

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                • #9
                  Get the transplant. Your co-worker/friend is donating the kidney out of love. What is given with love should be accepted with grace. My older brother gladly gave me a kidney 30 years ago. It lasted 29 1/2 years and finally failed January of 2015. They were great years for me. I was free of all the restrictions I now face with dialysis. My energy level was very high; in fact, I owned and operated a landscaping company for 16 years and did much of the work myself. I raised 3 sons. I drank what I wanted with no restrictions. I lament the failure of my transplant. Even as it began to decline 5 years ago, I lived a normal life. In fact, as it went to 19% function in September 2014, I felt and lived pretty normally. Get the transplant. Think what the next 20 to 30 years might mean to you. As far as the risks of surgery and the effect on the donor: the danger to you is not the surgery but the drugs you take and with modern testing methods that's minimal, plus they've never lost a donor to my knowledge. My brother is now 73 years old and has never had a health problem. Get the transplant.

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                  • #10
                    What a great post! Your husband is a lucky guy to have you for a wife!

                    I am 46 and back in dialysis for a second time as I await another transplant. I was given my first kidney in 1989 ( a cadaveric donor ) and it lasted for 25 years!
                    There is absolutely NO comparison between life in dialysis and life with a successful transplant. Dialysis sucks, plain and simple. It is, at best, the textbook
                    definition of " necessary evil. " I am doing very well under the circumstances, but I long to get back to the other side. Nothing is guaranteed and without risks,
                    but the quality of life that comes with a transplant is as close to " normal " as anyone with ESRD will ever know. I have spent the last 25 years being an outspoken advocate of organ donation/transplantation. I encourage EVERYONE who is eligible to become a recipient to do so. Nothing else ( outside of being born perfectly healthy! ) even comes close!

                    Again, Bravo! to you, Lovingwife 1!

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                    • #11
                      First, I want to say that many dialysis patients live beyond just five years. I was on dialysis about a year before I received a cadaver kidney. That kidney lasted only 18 months, and I was in and out of the hospital for 8 of those months (not rejection episodes, other issues). I'm back on dialysis now and have been for 8 1/2 years. Yes, I am back on the transplant list, and I've been waiting 7 years. Because I have PKD, my family members are not potential donors. I have a friend who wishes to be a living donor, but because of my having children, many blood transfusions, and the first transplant, I have 100% antibodies; she has zero. So, even though we are as close of a match that is possible, that one area is keeping me from receiving her kidney. We are enrolled in shared donor program. I'm listed on UNOS. My transplant center tells me I'm at the top of the list--IF ONLY I wasn't 100% antibodies.
                      What can I do? I'll tell you. I keep all my dialysis appointments; I watch my diet and my labs closely; I live life as it comes. Sure, there are restrictions, and yes, I have some of the secondary problems (Charcot's Disease and minor heart issues), but I'm still alive, happy, and hopeful. I am DETERMINED to be happy and content--with or without another transplant.
                      That being said--go for the transplant! Accept the gift you've been loving proffered. Good luck!

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