Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
This is a posting from Pamgirl that really needs our attention. I'am afraid people are not going to see it as it was buried deep in another thread. Let see if we can't help her out.
Well I just turned 53 and I have terrible pain every day of my life from these things and with pain comes the depression or I like to say "down comes the rain." With a 16-year-old to mother and not much ability to do it, it really takes a toll. I am looking into finding a living donor and going to the University of Maryland where they do the take out the native kidneys and do the transplant at the same time.
Has anyone heard of this? They are one of the few centers in the country that does this. I was told by my local doctors that the kidneys would have to come out before the transplant - no doubt.
Well I just turned 53 and I have terrible pain every day of my life from these things and with pain comes the depression or I like to say "down comes the rain." With a 16-year-old to mother and not much ability to do it, it really takes a toll. I am looking into finding a living donor and going to the University of Maryland where they do the take out the native kidneys and do the transplant at the same time.
Has anyone heard of this? They are one of the few centers in the country that does this. I was told by my local doctors that the kidneys would have to come out before the transplant - no doubt.
make no mistake, nephrectomy is a serious operation, taking out both kidneys makes it twice as serious. add to that the normal surgical risks of kidney transplant.
people have had these procedures done together but I have known of two cases where the men nearly died, the transplant was rejected and the men were incapacitated for a very long time. to the best of my knowledge they are both recovered now and on dialysis (making the best of it by the way). one man had a second transplant that failed miserably.
quite honestly, I don't know of any success stories of bilateral nephrectomy/transplant operations tho I am sure there must be some. I hope someone can give you better news.
unless your 16 year old has special needs he/she should be able to step in and assist you if dialysis becomes necessary.
please consider your options carefully, if you chose this surgery ask the surgeon about successes and failures.
My plan however is the liver transplant (remove/replace) and the kidney transplant. I have no desire to have a nephrectomy as my kidneys aren't the cause of my pain (at least I highly doubt they are since my liver is so large and dominates everything!). Besides, my kidneys have some residual function and hopefully still will, so I want to take advantage of that and give the new kidney a bit of a break.
There are multiple centers that will perform a nephrectomy with a transplant, but it's a final decision that is made during the surgery: if the donor kidney dosen't pink up right away, do you really want them to remove your native kidneys and lose all fluid management capability abruptly even if you need to be on dialysis for a short period of time until your new kidney wakes up? It's important that there not be any absolutes, that the decision be made based on the situation at hand and not "there will absolutely be a bilateral native nephrectomy and kidney transplant (which is the backwards process in any case; the kidney should go in first, then a decision made about a nephrectomy).
I do know some individuals who have had a nephrectomy with transplant and did well. I know some who had a nephrectomy prior to transplant who did will. And I know some who had a nephrectomy post trnasplant who did well. I also know some in all situation who did poorly and have never fully recovered from the situation. As Helen said, a nephrectomy is MAJOR surgery, even post transplant.
In the mean time I hope you've been able to find a better pain management regimen and discussed the options for a nuclear renal scan and possible unilateral nephrectomy to reduce the pain with your nephrology team. Please stop by and give us an update on how you're doing!
Ruth
Jenny
-Brian-
Congratulations on your transplant and blessings on your angel of a donor, Patricia!
As a living donor recipient, the local OPOs, both the Washington Regional Transplant Community (covers DC, northern VA, Maryland (beltway counties) or the Living Legacy Foundation would love to have you as a speaker or participant in some of their events. They love having living donor recipients (and living donors) speak about their experience (and help you develop your speaking skill; you're not sent out on your own to talk!) and encourage others to not only sign up to be organ donors but also learn about your experience and possibly consider it for themselves.
WRTC (I'm a member of their speaker bureau, albeit not currently active) can be contacted at 703-641-0100, or rhonda@wrtc.org.
Living Legacy Foundation website (I have no experience with them) is: http://www.thellf.org/default.asp
There is also a DC chapter of the PKD foundation (last I knew the Baltimore Chapter was defunct; it's died multiple times in the last few years). Although most of the DC chapter events are in Northern VA but it's worth the trip (they have a lot of post-transplant patients!). Check them out on the PKD Foundation website (you can find them under Connect Locally (www.pkdcure.org; they even have a Facebook page) or contact them at NationalCapitalChapter@pkdcure.org (give them time to respond; they don't check the email every day).
Congratulations again and best wishes,
Ruth
Blessings
Heather