I have heard of it being done but I was not so lucky. with any surgery there are risks and PKD kidneys can be quite large and not easily removed. there is the danger of bleeding, fluids escaping and causing problems with potassium overload, probably others.
when it can be done it makes life easier on the patient, not necessarily on the surgeon. often surgery is done in the manner that the surgeon prefers.

My mother had her kidneys removed. I've become friends with some of her dialysis buddies who have also had their kidneys removed. It was pretty tough on all of them.

She recently passed (not from kidney removal). Her health was poor to begin with and she didn't qualify for a transplant. Her quality of life fell below a level acceptable to her so she stopped dialysis.

LPenrod,
I'm sorry to hear you recently lost your mother. Regardless the reason or if it was expected, the loss is still there.

On the kidneys, I believe they can be removed laparascopically, although the kidneys unless the kidneys are relatively small, they are unlikely to be fully intact when the are removed. But considering they can remove a normal donor kidney with just a small incision (and I know of donors with 17 cm kidneys), it only makes sense that with care, they can do the same with a PKD kidney as well.

Graphic details:
PKD kidneys tend to be sticky and have extra adhesions due to previous cyst ruptures, etc. They can be disconnected from blood vessels, nerves, ureter, and tendons and adhensions, put in a sterile bag inside the body and then cut up and made into a bit of a slush and then pulled out that way.

Conversely they can be removed via an incision on the side. This is the best way to remove native kidneys if the laparcopic method isn't effective (and a lapracopic procedure can easily be converted to a small open procedure as needed). Yes, in the case of a dual nephrectomy it will involve an incision (relatively small) on each side, but it's by far the preffered method of removal for the patient and doesn't risk anything in your abdomen (bowel, instestines, liver, etc.)

The worst way to have them removed (but seems to be the preferred lazy surgeon method) is to go in through the abdomen. The reason this is the lazy surgeon way, but infinitely worse for the patient is because it involves going all the way through the abdomen, taking out the small intestines and possibly moving the colon as well (usually with PKD kidneys, the colon has already been pushed to the sides, so the colon isn't in the way) and then cutting through the peritoneum to access the kidneys. So while it's easy for a surgeon, it's massive surgery for the patient who ends up with a huge scar, both internal (your entire peritoneum has been opened and closed) and external. I honestly do not know if peritoneal dialysis is an option after this surgery; it certainly would not be an immediately option as the peritoneum takes weeks to heal and there would be extensive abdominal adhesions as well. There is also a signficant possibility of the surgeon nicking the bowel or small intestines, which doesn't happen with the side or laparascopic surgery as the abdomen is not accessed. And if the surgeon is not very careful about running the entire length of the small intestines (which involves literally hand running the entire length of the small intestines and putting everything back carefully in place, you also run the risk of a twist or kink in the instestines and the need for either a second surgery or a wait and see approach to see if the intestines straighten themselves out. Why a surgeon uses this approach is simply unknown, but it's all too common. It's well worth the two smaller incisions on the side if necessary than the chest to pelvis incision and all the attendant complications involved instead.

Keep in mind too that your kidneys are what metabolize and process the general anesthesia from your system (general anesthesia includes a paralytic, which stops your intestines and bowels from working at all). Without kidneys or with the removal of one kidney, it will take signficantly longer for your system to get rid of the anesthesia, so it's going to take longer for your innards to kick in and start working again.

If you are looking at having one or both kidneys removed, have a serious discussion with the surgeon about the method he plans to use. He should use the method that is BEST for the PATIENT, not what is most convenient for him. YOU are the most important person in that operating room, not him and he needs to take the time to perform the right procedure the right way. If he refuses to even consider it, fire him. He's not the right surgeon for you (as he doesn't care about you), and find someone else with experience and who will work WITH you to ensure you get the best possible care.

Why are you considering kidney removal? It's an extreme solution to your cyst problem and unless you have basically no function in that kidney, you will lose kidney function (and may well lose a signficant amount). The only way to know how well the affected kidney is working is a nuclear kidney scan, which will determine how much each kidney is contributing to the whole. Then using those numbers, your doctor can determine how much the affected kidney is actually working (if at all). For examply, my recent nuclear scan showed that my left kidney is doing 30% of the work and my right kidney does the other 70%. Since I have 30% kidney function, my left kidney has about 9% function and my right kidney has 21% function for the total 30%. It's a rough estimate as even at a relatively low function, our kidneys have some excess capacity and nothing is exact (especially when using GFR as a measurement). But I say this to let you know that cyst ruptures and infections aside, which are all very treatable by a competent nephrologist, you don't want to remove a functional kidney and end up on dialysis (which I would if my right kidney was removed...and it is by far my problem child, hurts like crazy, is compressed by crazy my liver, etc.).

Hope this helps!
Ruth

PS Please do NOT let donating your kidney to science be a determination in how your surgery is performed. There are more kidneys being donated than there are researchers. Your HEALTH is infinitely more important than any donation, and the researchers only need a teeny tiny portion of a PKD kidney for research in any case; they never take the entire thing except for Looky Lou's (there's a specific protocol for what the researchers want and it's a very, very small amount from a very small part of the kidney which can easily be obtained from a partial kidney). Please don't let your doctor talk you into any other procedure other than the one that is best for YOU!

I am not to the point yet where I need something that radical. I just never hear about PKD patients having laparoscopic removal. I was pretty sure it is an option for them. I would certainly fight for it for myself.

I had gastric bypass. It was done laparoscopic. My brother and sister both had it open. My recovery was a breeze. Theirs was far from it. Now they deals with issues such as hernias.

My mothers kidney removal was open.

My mother was starting to have trouble breathing. She was told that her kidneys were starting to push organs against her diaphragm. The estimated kidney side was 40-50 lbs. She was cut from side to side just below her rib cage to remove her kidneys. Her kidneys ended up weighing 11 lbs combined. I wanted to choke her surgeon. She barely survived the procedure. She would have never had it done had she known they were so small. She lived in Wichita and had different doctors.

I just want to know if I ever get to that point that laparoscopic removal could be an option.

Yes, I had heard that they bagged them, blended them up in the bag and then sucked them out. ...shivers.... Sounds way better than them going in through your chest to remove your kidneys.

Hi,

Mine were removed in open surgery and the incision was vertical, from just below my sternum to just above my pelvis. I talked about the laparascopic option and my doctor told me it would not be possible due to the size of my kidneys. Unlike Ruth, I did not pursue the options further. I really liked and trusted my surgeon...and perhaps I was wrong not to pursue the laparascopic option further, but I did have a very good result. I understand that this is a very serious procedure and I do NOT want to minimize it. With that said, for ME, I found the recovery pretty easy. Not the first week or so...I was in the ICU and felt terrible. but once I was home it was a matter of days before I could walk several blocks and resume normal tasks. I was still very tired but that was because I was getting used to dialysis and life without kidneys. Life without kidneys is a serious matter. My blood pressure spiked and I had very low hemoglobin. but I did recover very well from the surgery. I attribute that to the fact that I was 45 and in excellent health (other than PKD). I imagine I was also just lucky. I had my kidney transplant from a live donor 10 weeks after the nephrectomy.

LPenrod,
Like Lindsay, I shiver to think of the procedure your mother went through. While the vertical incision (going lengthwise down the body) is used, it's the most barbaric of the procedures available. Easy for the surgeon but very, very hard on the patients (see Mrdkentucky's story for a bit of a reality check).

The incision your mother's surgeon used makes absolutely no sense...in any time period! It's unconscionable that anyoone would consider such an incision for a nephectomy, especially of what they expected to be such large kidneys (and 11 pounds is not small, especially if she was not a large woman). The kidneys are retroperitoneal and if accessed from the front, a vertical (lengthwise) incision is needed, not horizonatal, something that opens her up across from side to side. Her surgeon was a butcher, pure and simple.

That said, I'm doubt the surgeons actually went through her chest to access the retroperitoneal cavity where her kidneys were(although it looked like it). They probably just went through the top of the abdomen, pushed aside the transverse colon and accessed the peritnoneum that way. And if she had normal kidneys, they would be located close to that area retroperintoneally, but hers were much larger than normal kidneys, most likely with plenty of adhesions, so accessing the entirety of each kidney and removing it without tearing anything or causing additional damage would be tricky from that angle (no matter how many retractors were used). The diaghragm is under the ribs and runs from above the kidneys in the back and slopes upwards towards the front and acts as a protective shield and is what expands along with the lungs every time the lungs expand (and has an incredible amount of nerves, both sympathetic (pain) and autonomous (reflexive, part of the autonomous nervous system that keeps us breathing, our heart pumping and all those things we don't have to think about doing. It's also what keeps the abdominal contents away from the delicate lungs and allow us to actually do PD; without an intact diaghram, the PD fluid would infiltrate the lungs and you would drown from the inside. I just doubt they went through that, through the abdomen and then retroperitoneal to get at the kidneys.

Just the thought of what your mother went through... mere words can't express how I feel.

BTW, in regards to your mother...11 pounds of kidney can be an enormous amount in a small person and if pressing on the lungs and causing problems with breathing and oxygen saturation levels, probably do need serious consideration for fenestration or, if failing or seriously compromising overall health, removal. Size is NOT the only consideration. If the lungs and heart are going to be seriously compromised by keeping enlarged kidneys that are causing a serious lung dysfunction in place, then the kidneys probably need to go (dialysis, while not the ideal option, is at least an option; lung and heart transplants are few and far between and probably aren't going to happen with someone who still has the underlying kidney condition and/or is on dialysis). So even though her kidneys were "only" 11 pounds, that may well have been 9 pounds too much for her body to handle, especially how they were being carried (we don't all carry our kidneys the same way). We are all each unique and have our own set of unique issues and while you may have no problems with 40 lbs of kidneys, 15 pounds of kidney may be way too much for me (I know that additional 25-30+ pounds of liver I have on top of my enlarged kidneys is far over my limit!). So please don't go by size or weight alone; there are many other factors that affect a decision to remove a kidney. In the best possible circumstances, the remain in the body forever, but sometimes, that's simply not an option.

Hope this helps!
Ruth

And yes, the blender is the best description for the laparascopic process. You're under general anesthesia, totally unaware, so it doesn't really matter how they get them out, does it. As long as they do it carefully and cautiously and with an absolute minimum of anesthesia and incisions and chance for infections, you're fine.

That's a great point, Ruth! My aunt just passed away in March because a cyst ruptured, causing a hole in her diaghragm. It became infected and spread to her lungs, causing respiratory failure. They found gastric contents in her lungs, and she hadn't aspirated. It saddens me to think that her death could have been prevented by the removal of her kidneys. She had been on dialysis for 7 years and stopped producing urine a long time ago. I wonder why they kept them in...Thanks for the great discussion.

Sandy

From what I understand, they don't remove them unless there is a reason to such as unmanageable pain or chronic infection.