Both Kidneys removed

[woodsman]

Has anyone here had to have both kidneys removed and if so how are you doing?. My Neph and transplant center want to remove both of mine and i am really not ready for them to do that any time soon. I am at a crossroad here and i am looking for as much info as i can get to educate myself.
ouestions are:
1: did you feel better afterwards
2: how much discomfort is there
3: how does one go through the day without taking a Pee?
4: how are you doing today and what sideeffects do you have
5: was it all worth it??
 Thanks in advance if anyone has had this done........... and can help...

[MooseMom]

Do you know why exactly they want to remove both kidneys?  Are they pretty certain the cysts are malignant?  Do they think the cysts, if benign, will nonetheless grow and become problematic?

Can you get a second/third opinion?  This just seems so drastic.  What are the risks to doing nothing at all?  What exactly is the benefit to having them removed?

[Cordelia]

I have PKD, my urologist won't take my kidneys out because I'm still urinating and removing SOME toxins, even though I'm on dialysis. He won't take mine out until after my transplant. I'm in pain but I told him I would wait. Are your kidneys causing you a lot of pain Woodsman?

[Ang]

in 2007 i had my left kidney removed and the right one removed in 2009.
my neph said one had to go or no transplant.
after the first came out i spent 12 months  tossing up the idea about the other coming out, while on a visit to see
the surgeon,she made up mind up for me,she placed the consent form under my nose and said sign,which i did or still tossing up the idea.
she explained that the kidney was a waste of space,with no functionality.
having 2 times 4.5 kilo kindeys removed , is a great weight loss method :urcrazy;who needs jenny craig
definetly felt better, not having to drag the excess weight around
can't say there was any discomfort,just the usual from surgery
not taking a pee becomes normal after the brain realises "can't do that anymore.
after a tx you quickly become re aquainted,with that particular function
after both kidneys removed, no real side effects, just ups and downs of dialysis
definetly worth it,transplant came in september 10
all going well at the moment
good luck with it all

[woodsman]

in 2007 i had my left kidney removed and the right one removed in 2009.
my neph said one had to go or no transplant.
after the first came out i spent 12 months  tossing up the idea about the other coming out, while on a visit to see
the surgeon,she made up mind up for me,she placed the consent form under my nose and said sign,which i did or still tossing up the idea.
she explained that the kidney was a waste of space,with no functionality.
having 2 times 4.5 kilo kindeys removed , is a great weight loss method :urcrazy;who needs jenny craig
definetly felt better, not having to drag the excess weight around
can't say there was any discomfort,just the usual from surgery
not taking a pee becomes normal after the brain realises "can't do that anymore.
after a tx you quickly become re aquainted,with that particular function
after both kidneys removed, no real side effects, just ups and downs of dialysis
definetly worth it,transplant came in september 10
all going well at the moment
good luck with it all

Thanks so much for sharing your info with me these thoughts are gonna go far with me amking the decision to have this done or not. I still have to see more doctors before making any decisions...

Again thanks... and keep em coming..

[MooseMom]

Forgive me if I am wrong, but I am getting the impression that other posters are assuming you have PKD, woodsman.  I don't recall you saying PKD is the cause of your kidney failure, or am I mistaken?

Again, why exactly do they want to remove your kidneys?  What are they expecting these cysts to do?

[BillSharp]

Had both my kidneys removed in 1988 prior to my LRD transplant. I was able to control the pain with drugs. Thee days, I would imagine that kidneys can be removed laproscopically, which generally means little pain and a short healing time.

[woodsman]

Forgive me if I am wrong, but I am getting the impression that other posters are assuming you have PKD, woodsman.  I don't recall you saying PKD is the cause of your kidney failure, or am I mistaken?

Again, why exactly do they want to remove your kidneys?  What are they expecting these cysts to do?

MM i have IGA, tjhey found cuysts on both kidneys when i was re-evaluated for transplant. They then think that they maybe  bleeding and 2 are very close together. CAT and MRI (no dye) don't show them what they want to see so now off to get more testing, see my regular doc on thursday and i'm giving him the ball and he is going to run with it for awhile...

[romanyscarlett]

1: did you feel better afterwards
I had my polycystic kidneys removed separately. The right one was taken out in April 2010 and I had the left one removed on 4th May 2011. In both cases I spent 7 days in hospital followed by 7 days in bed at home. After that I was pretty much back to normal as long as I took things slowly. After 3 weeks I was driving, cooking and able to walk around the shops.
2: how much discomfort is there
The first week in hospital is agony. Both my surgeries involved 14 inch incisions which was very distressing to look at the first time round as I wasn't mentally prepared. It didn't really bother me the second time round though as I'd had a year to get used to the first one. As for discomfort, after the initial agonising week in hospital the pain rapidly got better for me. I spent 3 days on a fentanyl drip followed by 4 further days of oramorph and paracetamol. After 7 days I stopped taking all painkillers. The staples they use to keep the wound together caused me the biggest amount of discomfort because I could feel them pinching and pulling every time I moved. Once they were taken out the only pain came from moving too quickly or sneezing.
3: how does one go through the day without taking a Pee?
I think this a massive positive aspect of kidney failure. I can watch a movie without needing to pee half way though, I used to always need to pee in the middle of the night which is no longer an issue and I know I won't have to use potentially unclean public toilets if I go on a trip somewhere. The fluid restrictions are hard to deal with at first but I find it easy now because I've pretty much stopped drinking altogether and I just have ice-pops in 3 different sizes and a variety of flavours. A 20ml ice-pop will last me up to 20 minutes and is so much more refreshing and thirst quenching than a 20ml mouthful of water. The only fluid I actually drink these days comes in the form of 150ml miniature cans of fizzy pop. I find it so much easier to keep track of what I'm in-taking by having ice-pops and these cans because the amount of fluid is written on each one so I add them up each day and there is no chance of miscalculating.
4: how are you doing today and what sideeffects do you have
I'm doing great today. I went out for a 3 course Italian meal with my boyfriend and parents last night and today I'm making a large celebration cake for my mum to take to work. The only side effects from the kidney removal that I have is that it still hurts to sneeze!
5: was it all worth it??
Without a doubt. I'd do it all again if I had to. My polycystic kidneys caused me nothing but grief for 6 years. By the time I was 21 I was taking a cocktail of morphine, codeine and tramadol to keep the pain under control and I was always having to cancel plans with friends because I was ill with a burst cyst or infection. I'm 26 years old now and I am finally free from all the pain and negative side effects that my kidneys caused. I will never have to feel the agony of a burst cyst ever again. That alone makes it all worth it.

[Cordelia]

Interesting! Thanks for the heads up. I am thinking of doing this procedure for my PKD after my transplant. I have a lot of back/flank pain. My urologist wants me to wait until after transplant cuz I'm still peeing, removing some toxins even though I'm on dialysis. So, for now, I have to wait at least another 8 mos or so because my transplant likely won't happen til the beginning of 2012.   

[romanyscarlett]

I should add that when we decided to go ahead with my nephrectomies, I wasn't on dialysis nor was I anywhere near needing to start treatment. I still had kidney functioning of 24% when the right one was removed. I lasted another 2 months before having to start dialysis. I was still producing urine and clearing some toxins when the left one was removed.

We went ahead with my operations while I was still healthy because of the levels of pain I experienced from the kidneys.

When I started dialysis we explored the option of my mother donating me a kidney and we were approved months ago but the transplant team in Bristol wouldn't go ahead until I'd had the left kidney removed. The original plan was to have the left one removed 8 weeks after the first nephrectomy back in 2010 but due to a variety of health issues and fistula problems it took a whole year to get the job done.

I had six blood transfusions in January and we are currently awaiting the results of one final test to see whether my antibodies have returned to normal so we can go ahead with the transplant. If the results are ok we are hoping to have the transplant as early as the end of July.

[Cordelia]

Good luck!   

[MooseMom]

Again, I think we might be veering off topic.  Woodsman doesn't have PKD.  Woodsman, are these cysts causing you pain?  Is that why they want the kidneys removed?  Or are they afraid they might be malignant and want them out because they are unable to ascertain what exactly they are?

[romanyscarlett]

How are we veering off topic? The questions were for people with both kidneys removed to answer. Just because the answers so far have been as a result of PKD it doesn't make it any less relevant than someone having them removed due to cancer or any other illness.

Woodsman wants to know what it's like to have no kidneys & that's the information being provided.

[MooseMom]

How are we veering off topic? The questions were for people with both kidneys removed to answer. Just because the answers so far have been as a result of PKD it doesn't make it any less relevant than someone having them removed due to cancer or any other illness.

Woodsman wants to know what it's like to have no kidneys & that's the information being provided.

I see your point, but more often than not, PKD people are saying that it relieves pain, so they are glad to have them removed for that reason.  I thought that the reason for Woodsman's nephrectomy was really yet to be determined, but it doesn't seem to be a reason due to pain.  I'm not sure about that, though, which is why I am asking. 

I understand that the reason for removal gives the same results, but if you are wondering if the surgery is necessary in the first place (ie, you're not symptomatic and no malignancy has been verified), the emotional results, if you will, may be quite different.

[woodsman]

The transplant hospital BUFFALO GENERAL wants them removed before proceeding with the transplant because they are not sure that they are not cancerous and some of the cysts are very close together and maybe be bleeding. I don't have any pain from them at all. I am just confused that buff gen wants them out before proceeding and i am now on hold fro a transplant until a firm diagnostic from a urologist says otherwise. I have a appointment right after my 1st dialysis on tuesday for he can look at the MRI and katscan that i had. Then we go from there. I figure they will want to do a test using dye now that i am on dialysis but i will wait and see.. the fun begins tomorrow at 6am....

[Cordelia]

Sometimes there is an issue with "room" to put a new kidney in with a transplant. That would be another reason for opting to remove the kidneys.

[okarol]

I hope you can get some decisions made soon Woodsman. Did they say that both kidneys have bleeding cysts? It's not uncommon to remove one or the other. It seems likely that a biopsy is a diagnostic tool they may also use before doing a surgery like this. It will be good to know the results of the MRI and CT scan. Good luck!

[Ang]

good luck woodsman,

[woodsman]

WOW i just realized that i am no longer going start a thread in the Pre dailysis section...  oh snap... 

[MooseMom]

Well, don't think you're going to get off that easily because there are all of us pre-dialysis people, especially me, who are going to nag you with all of our questions.  You've been there, done that, so you get to be the font of all pre-dialysis wisdom!!  We need you more than ever, that's a fact!