It was explained to me by a neph that kidney removal is a major surgery and so that being the case the kidney(ies) are removed only when room is needed for a transplant, or I suppose ( and this is my own thinking here) if the kidney got so big that it was affecting other organs.
He also said that as long as the kidney has even a hint of function it wouldn't be removed.
I too have a large stomach from enlarged kidneys. My left kidney is football size but still functions, though just barely, so I'm stuck with this monster until and if it ceases to function and room is needed for a transplanted kidney.

Thanks Liz, well I guess I am out of that little idea! My creatinine is not even 2 yet, those dam things plan on working as long as I am alive I guess. Was fun hoping for a while .... Norma

I know it really stinks. And it's 2015 for pete's sake! Haven't the pharmacologiosts come up with ANYTHING better for pain??
It's one thing to be stuck with an enlarged tummy due to kidneys but no one should have to endure pain!

Dang, we all have such complications, and it is hard to fit into the doctors little recipe book. Yes, I just don't know how they would deal with taking out a kidney that is still functioning. But I wonder if there is some kind of a way to figure out which kidney is functioning the least, and by how much?

The only ones I know of who have had a single, or double nephrectomy are those who either have had, or plan on having a transplant or dialysis. I just don't know. And the thing I hate about is that the more drugs we have to take, the harder that is on the rest of our health, and other organ functions. These drugs are terrible.

I keep going around and around trying to figure this out...

How is your brother and your nephew doing?

Blessings Norma, I know it is so hard to deal with this. Now, do NOT say you are 73 until you ARE 73, hahaha!

I have heard of people having a kidney removed to alleviate pain, but this may tip you into needing dialysis. Individual kidney function can be calculated (I think Dixie had this done, but she hasn't been here for a while). I've read that radioactive tracers can be used for this, but there may be other methods.

Finally, the spandex may actually be causing at least some of your pain. Even years ago, when my kidneys were much smaller, I realised that having any pressure from clothing actually caused me pain. I now can't tolerate any waist band pressure at all. Elasticated waists have to go below the belly. Try leaving off the spandex and see whether things improve at all. Pain relief trumps vanity.

Chewitt

I am going to try to tell the short version of my pkd life. I am 44 and have been suffering from severe chronic pain for the past 5 years. Approximately 3 years ago I started asking my neph about removing my kidneys because of the pain. The answer was always NO! Eventually she decided to do the test and see how much function each kidney is providing, for the possibility to remove 1 kidney. Well, no good they we're at 49 and 51% of my remaining 25% function. So no go. I kept persisting about the bilateral nephrectomy. My pain sucks and I am taking very high doses of pain meds, followed by the plain clinic. After much persistence I was finally given approval for a bilateral nephrectomy, once a live donor has been found and a transplant date has been set. Finally!! Well, we are looking for and testing donors. 2 are in the works right now. Fingers crossed! Anyways, at my last appt with my neph I explained all the issues at hand and how frustrated I am with having no life. So, now I am trying to decide if I will have my kidneys removed sooner. I think if neither of the potential donors being tested now, do NOT work out, I will have my kidneys removed. I am at about 20% function, with a belly where I look 9 months pregnant. I just can't take all this pain and everything much longer.
It is very rare for functioning kidneys to be removed but with PKD we are a rare breed.
All I can say, is push for what you believe will work for you. You are the only one that feels I what you feel! I had to keep stressing to my neph that although I look good on paper, I am a mess in person. There is no text book for me. So don't look at the numbers, look at YOU!
Ask your Dr to test the function on each kidney (i forget what this test is called). When quality of life is affected, fight for what you want. Take care and best of luck!

My dear sweet Norma,

While your creatinine isn't at 2, you may be closer to renal failure than you think. The basic calculations don't take into account the fact that you're almost 73 years old and have very little muscle mass due to an inability to walk for long distances, lift weights and generally keep in the great shape you would love to do if it weren't for your spinal stenosis and PKD. I clearly remember my favorite nephrologist telling me that he had older female patients with a creatinine of 1.5 who were in kidney failure, who had been ignored by other nephrologists because their "numbers" didn't meet the ESRD criteria.

It's important to remember we're more than that set of kidneys and how we feel IN ADDITION TO lab results provide a much better picture of how we're doing. All of the calculations are based on someone with normal muscle mass, not someone like you or me who have none due to disability. My creatinine is 3.45, so my GFR is 14, but I also have a 25+ pound liver and 2 large, but squashed kidneys and everything in my abdomen and pelvis and retroperitoneal cavity are grossly compressed and misshapen and nothing is where it's supposed to be (not to mention no one has seen my stomach in years...it doesn't expand at all anymore). But despite all these abnormalities, my neph is adamant my GFR is 14, no matter how rotten I feel. I'm just happy I'm not tasting any metal and will FINALLY be listed for the liver/kidney transplant when my creatinine hits 4.0 and stays there for a couple of months (a one time hit doesn't count, it needs to stay there!).

Anyhow, my tale of woe is just to tell you that numbers are just that, a set of numbers. How you feel says more about your kidney function than anything else.

And if you decide that a single nephrectomy is the best option for you in terms of both pain management and having room in your abdomen so you can actually eat healthy food instead of relying on Ensure for all of your meals (the vanilla flavor is not too bad when it's cold; just be careful with the "Healthy Heart" version as it has added potassium, as do most all foods labeled healthy heart), talk with your nephrologist and/or get a second opinion (your HMO should honor your request considering the significance of what is being considered...and a second opinion doesn't mean seeing another doctor in the same practice, contrary to how many insurance companies want to work; it should mean a completely independent consultation with no influence from the partner down the hall!

To determine if you are a candidate and if so, what kidney shoult be removed, your nephrologist or urological surgeon should order a nuclear renal scan, which will determine how much kidney is contributing to your overall kidney function (virtually no one has each kidney contributing 50% to the overall function). For example, I've had this done twice, once to rule out a blockage and once for consideration of a unilateral nephrectomy for pain management. In both cases, the test results indicated that my right kidney does 70% of the work and my left (which had been hit with a massive kidney infection and kidney stone) was only doing 30% of the work. Fortunately there was no blockage and although we never went the nephrectomy route, the logical choice would have been to remove the left kidney as it was the serious under-performer and the right was and still is doing most of the work.

As others have said, a nephrectomy is major surgery and your need a urological surgeon with experience with removing PKD kidneys. This CAN be done via laparoscopic surgery, with only a few minor incisions, despite the size of the kidney. Done this way, small incisions are made for the surgeon to insert a variety of surgical instruments, to include a bag into which the kidney is placed after it's been disconnected from the arteries, veins and ureter. Once in the bag, the kidney is basically minced inside the bag, and then easily removed through a small incision in your side. This is infinitely better than going the route of a major incision (either via your side, to access the kidneys directly) or worse yet, via the abdomen, which involves pushing aside the liver, intestines, bowel and then going through the peritoneum to access the kidney (which is a ridiculous method and greatly increases the risk of nicking another organ, the bowel, etc.). Which ever method is chosen, be sure your surgeon has years of experience with removing PKD kidneys and you're very, very comfortable with not only his/her plan of action, but the rest of the support staff and how they're going to determine which kidney to remove.

For those who are near kidney failure, a nephrectormy for pain relief will probably put you on dialysis, but that will also get your on the transplant list earlier rather than later. Remember, the process to be listed has changed and you HAVE to be on dialysis in order to be listed now. Unless you have a living donor, a deceased donor kidney is only going to be +/- 15 years of your age (except for those perfect 6/6 matches or children under 18). No longer will 60 years olds get 18 year old kidneys.

I hope this information helps!
Lots of love and hugs,
Ruth

Find a doctor who will do laprascopic - doesn't look like I spelled that right- surgery as posted by that guy.
I'm on my 3rd neph, he is open minded and supportive in trying alternative therapies. Doctors are very human and so many are not really up on all of the new treatments, which I found so surprising!
As for your age, my Mom got a hip transpant at 89 and she was fine. The doctor told her they won't do any surgeries after 90, she's 94. Please remember, you don't have to live in pain, you can find a surgeon who will do the laprascopic surgery, and do not give up until you get the result you want!

Quality of Life. If you have no quality of life, you should be able to have one of your kidneys removed. I did.

Also, I had mine done laparoscopically. I don't know why someone would entertain the thought of an open procedure.

My left kidney accounted for 60% of my pain. The nuclear renal scan showed that the left kidney accounted for 45% of my overall kidney function, so out it went.

I asked my surgeon if he was going to stick blender my kidney to get it out and he said that he has found that they are too fibrous (I think that was the term he used) and it was easier to take it out whole (it came out through a 4" incision).

Anyway, quality of life is an important consideration and absolutely should be factored in.

I have asked my neph if I could remove my left kidney since it only adds 10% of my remaining function. I have enough over all function to remain off dialysis. But nowhere near good function. I too am in a lot of pain. I have no room in my abdomen for anything. LOL even food at times. Deep breaths feel like I'm going to bust my seems. I have had two hernias fixed now. I'm sure that it is because my abdomen is stretched so tight. I have been told that even if they remove that kidney since it has been causing this much pain for so long that the pain might even remain after it was removed. They say the nerves in that area may always be wired "so to speak" for that pain even after the cause of the pain is removed. I have got the Dr.'s to talk about removing it but not to entertain actually doing it at this point. I feel like my abdomen is fused together and solid as a rock. I can not bend it or lean side to side anymore without feeling like I'm going to break something. I'm sorry you hurt as bad as you do. I also take pain medication and I also get very little relief. I take Zohydro ER and Norco for break through pain. I do not get near enough relief from them to actually function well. I pick when I take my meds now for when I get up in the morning because that is when I hurt the worst. And then later in the day I work my meds around what I want to do. I take one if I want to go to town so I can get at least a little relief. Or if I'm going to see family I try to take one then so I'm as good as I can be. I absolutely hate going through life having to choose what I do ever so carefully so I have meds to take when I do them. I wish I could get all day relief so as I could have somewhat freedom to come and go a little more or even work again. The more I grow in my abdomen the more I hurt. The hernias were a surprise as well. I tried to tell the Dr.'s that I simply just had no more room in my abdomen and after fixing two hernias they are reluctantly agreeing with me. I just wanted to write this as so you know you aren't the only one with this idea. It does seem like a good one. I'm sorry to say I'm not sure many Dr.'s will entertain it though. But good luck. If you do get one to listen please let us all know about it and how it works out for you.

It is true that some percentage of people that have a kidney removed will not be relieved from the pain. My mother still had her pain after a double nephrectomy. I had my left kidney removed and I did get pain relief. That side only hurts when my right side hurts real bad (sympathy pain?).

Have you tried splanchnic nerve blocks or splanchnic nerve ablation or kidney scraping?

When I was having trouble bending right and left and things were pushing into my lungs, I had a kidney scraping on my larger kidney. That helped for a couple years. It didn't help with the pain so much for me and I even had a small increase in GFR.

I had a series of nerve blocks on both the left and right side. I had 100% pain relief!!! I cried. I forgot what it was like not to hurt. The blocks can last up to one year with 9 months being the average. For me, the blocks lasted 6 weeks, 4 weeks, 1 week, then not at all. So they attempted to damage the nerves (ablation) and it did not work. The mayo clinic is/was doing a research study where they go in and remove a segment of the nerves. I was getting ready for that when I decided I was done with my kidneys and it was transplant time. I decided I didn't want years more of sickness (chronic infections). I decided they must go so I can get back to a normal life.

If you would like any information on any of the procedures or pics, let me know.

In the trenches with you.

Larry

I meant to add that one doctor sold the nephrectomy as all sunshine. I think he did that so I would expect the pain to be gone (mind game). But others made it clear that there was a significant possibility of no pain relief.

Larry,
You would be a great candidate for a splanchic sympathetic nerve ablation (I think that's the formal term). It's where they destroy the nerve that they successfully blocked in the past. Obviously you would only need to have the one side blocked, the side where your native kidney resides. It's a procedure done by a thoracic surgeon and has a very good success rate (the Brits also use this to reduce non-reactive blood pressure (hypertension that doesn't respond to multiple medications). Alas, here in the US, the small trials that have been done have not shown the same results on BP levels that the Brits have (but then again, we go up against Big Pharma, who have a vested interest in keeping their market share and the surgical procedure test was only done at one or two centers and did not look at renal pain at all). But considering your success with the nerve block, I would definitely look into the nerve ablation, or at least another nerve block!

Same for you, Norma. The nerve block is an outpatient procedure, although done with some heavy sedation (not general anesthesia). Larry is the expert; I looked into it, but there is no comparable procedure for the liver, so it simply wasn't an option for me.

As for the post-nephrectomy pain, of course you're going to have pain with only a single kidney being removed. And even with both kidneys removed, the compression and displacement they've caused are going to take significant time to resolve. As much as I would love to think that I'll come out of a dual liver/kidney transplant with simply post-surgical pain, I doubt that's all I'll be dealing with. Everything else in my abdomen and pelvis has been crushed and displaced and it's going to take time (and be painful) for everything to slowly get back to where it belongs, not to mention all the scar tissue and adhesions over the years that have formed that my body will have to deal with, whether the surgeons remove them or not). It's not going to be a walk in the park, but at least I won't have to worry about turning the wrong way and rupturing a liver cyst (that dreaded pop, followed by the scream of pain), just because I wanted to tie my own shoe!

We'll all get through this, one way or another. Having this support group makes it just a bit easier because you know you're not the only one dealing with some or all of the same issues. You're not alone.

Gentle hugs to all,
Ruth