Polycystic Kidney Disease (PKD) Support Group

you are asking a tricky question and not giving enough information to give a good answer. many people, including live donors, have normal kidney function with only one kidney. you may be one of them but without knowing your kidney function and other things about you there is no way to answer what will happen to you. very often a painful kidney has great function.
have you discussed this with your doctor? I don't know if they can get any information about the function of a particular kidney vs. general function but with all the testing now there probably is a way.
please let us know what happens.

I just had a left nephrectomy in September due to pain, inflammation, a really bad hemorrhage last year and poor function. It was the best thing that I've done because I feel so much better now in regards to the pain. HOWEVER, before I even considered the option, my neprhologist did a test called a split renal scan. This test determines what each of your kidneys is contributing to your overall function. In my case, the test showed that my left kidney was providing about a third of my overall function. My overall function was only 31%. So when we discussed removing it, there was a concern that I could go on dialysis right away. Fortunately for me, that did not happen. I lost about 8% percent of my function when the kidney came out (less than a third of my total function) and I am sitting at 23% function now.
This can be a big decision for someone who's still years away from transplant or dialysis so it's important to really consider the big picture. Most uriologists are reluctant to do nephrectomies, especially if you are still maintaining good kidney function, but there is a new push for PKD patients to have a better quality of life and more and more uriologists are considering nephrectomies on patients that they think will be able to handle the outcome, regardless of what it is, so that they can have a better quality of life.
For me, my kidney wasn't that big, but the cysts I had were huge and hemorrhagic. I had had a really bad bleed last year and it put me in the hospital for nearly a month. After that the pain increased, my function was steadily declining and I lived in fear of another bad bleed. When the decision to take it out was made, I was fully prepared for the possibility of dialysis and had already talked to my friends about live kidney donation. It's a big decision, but one you can't even consider until you've had a split renal scan to tell you how much function your right kidney has.
Hope this helps.
Take care and good luck with whatever you decide.
Tami

I am very grateful for your comments. I am roughly at 33% function. I have had my right kidney operated on four times to deroof the cysts. The doctors have done the split renal scan three times and for some reason they think it is not quite accurate. One test showed as much as 44% function on my right side which is the side I am considering having removed, the two others showed around 12%. I was totally prepared to go on dialysis until I watch the youtube vidoe last night of the lady on here and her arm looked so very sore and I guess I hadn't realized how BIG the needles are. My brother was on the dialysis that he used from home for three years but since he doesn't live in the same state as myself I never saw him have it done. I am needing a transplant yet, however, I am so ready to be done with the constant pain. One neph last week said he would go for it and tell the urologist in Salt Lake to take it out. The other neph I regularly see says he would agree with taking it out, but wants me to be prepared for dialysis because he thinks I will be on it for at least a month. I just don't know what to do. My father had his right side out at about my age, (I am 45) and he did great for about three more years and then had a cadaver transplant. He has since passed away due to a brain tumor so I can't ask him what level of function he was at when he removed his right kidney. Thanks for your help. I am sorry for the effects that all of you live with and I am thankful for your willingness to share.

There are other options for pain management before resorting to a nephrectomy. I know that size and pain are miserable; I too deal with this on a daily basis. I have not only the enlarged kidneys but also a massively cystic liver that wraps around my body from one side of my spine to the other and down into my pelvis and is expanding out to the sides and in front...I have no idea how everything fits inside....well, actually, it doesn't (parts are trying to escape and my stomach doesn't expand, etc.).

Medication (including sustained relief opiates, which will not cause the drwosiness like the immediate release versions do) can work wonders. Granted they doesn't reduce the size of the kidney, but they do dramatically reduce the pain with no impact on your kidney function and with the right bowel regimin, you will do just fine (opiates can be very constipating). This is the option I've chosen until I can get a dual liver and kidney transplant; surgeries are just unrealistic for me.

An alternate surgical option is called deroofing or fenestration with renal denervation; this procedure removes as many visible cysts in the kidney as well as strips the sympathetic nerves that transmit the pain from the kidney to the brain. You'll end up with a smaller kidney and less pain (both due to the smaller kidney and the denervation). This is just not a realist option for me; my right kidney is extremely painful, but inaccessible because it's surrounded by my liver and the left kidney doesn't hurt at all.

A nephrectomy is generally the last resort and should be reserved for cases when there are no other options....for when you've tried the other surgical approaches, the medications and none have worked. Once that kidney is out there's no going back. You've lost that kidney function and can't get it back.

To find out how well each kidney is working (as a part of the whole) you will need a nuclear renal scan. This is the only test that can determine what percentage each kidney contributes to the whole of your kidney function. I had this test done recently to look for blockages in my kidney (my creatinine jumped and my doctor was looking for a cause). The results determined that my left kidney is doing 33% of the work and my right is doing 67% of the work (the normal ratio is 55:45). My GFR is 34, so theoretically if I lose my left kidney I will lose 11% of my kidney fucntion and if I lose my left kidney I will lose 23% of my function. You and your doctors need to know this information up front so you can be prepared for the possible outcome.

To be honest, I have talked with my nephrologist (and have considered talking with the transplant team) about removing my left kidney, the painless one, just to make more room for everything else (especially the colon, which is squished beyond belief), but that was before we got the results of the latest nuclear renal scan. Perhaps if the function in the left kidney was lower, but I really don't want to lose 11% kidney function and run the risk of possible dialysis before a transplant (my only option is hemo with a catheter due to a variety of reasons).

I know how miserable the pain and stuffed to the gills with cystic organs feeling is, but please don't jump into a nephrectomy without reviewing all of your options. It's a one-way street and I honestly believe you need to explore all of your options and possibly try some of them before making that dramatic jump.

Best wishes and please do let us know what you decide,
Ruth

When we were discussing the possibility of needing dialysis after my nephrectomy my uriologist told me that they would put in a perma-cath while I was in the hospital, to dialyze from and then I would have to have some sort of access put in. When I talked with a vascular surgeon about the access he told me that the catheter could last 3 months or more, so my thought was that I'd try to have a pre-emptive transplant from a live donor before I'd need dialysis. I'm scared of the needles too, but my mom uses this cream that numbs the area before she goes to dialysis and she says it doesn't hurt much. My plan was to do home hemo while I had the catheter and if I could handle the needle sticks (which I think I could) then I'd stay on home hemo after my access healed and was ready for use.
Fortunately for me, my function did not drop enough to need dialysis. My right kidney picked up some of the slack from the left kidney being removed and I'm hanging in there at 23% function. I just had my referral sent to the transplant center so hopefully that process will start soon and I will have a new kidney before I will need to start dialysis.
It's a big decision because we're not sure exactly what will happen to our function afterwards. Even the uriologists are giving you there best guess. My grandma, back in 67' had her left kidney removed and her right kidney did exactly what mine did, picked up enough of the slack that she stayed off dialysis for another year. Each person is different, therefore it's a personal decision that needs to be made between you, your spouse, your family and your doctors.
Good luck!
Tami