Surgical removal of kidneys

[OldKritter]

I am 75 and have PKD , been on PD home dialysis for 3 years.
I’m 5’8” and weigh 118 lbs. My stomach is huge. I look like a kid’s drawing of a ball with stick arms & legs.

Kidney and liver cysts take up most of the real estate which makes a tight fit for the PD solution.
Been getting a lot of pain from one of them. 
Produce very little urine but still produce some hormones,  erythropoietin etc

My doctor suggested I think about removing the kidneys because I’m losing what little function I have. It would take care of the pain, give me more room for the PD solution.  I would have to take medication to supply what the almost dead kidneys produce.  There are some little ‘glands’ attached to the kidneys that create the hormones and stuff that still work.

Questions:
Anyone have both kidneys removed?
Recovery time?
Adverse reactions?  (Assuming the surgery goes well.)

I would appreciate your input. 
thank you

[Charlie B53]

I don't know anything about kidney removal but I would think that opening the abdomen for any surgery that you would not be able to do PD until a sufficient period of healing.  Which could require a Cardiac Cath and doing Hemo Dialysis during that period.

Talk more with your PD Nurse.  This will require you to watch your diet and fluid intake far different than you do now on PD.  When I switched from PD to Hemo I had to immediately stop eating potassium as well as the potassium supplements that I was taking daily.  And I also had to start watching phosphorus and take my binders with every meal.

Fortunate for you this will only be temporary.  Once you return to PD you can go back to all your current eating and drinking habits.

[OldKritter]

Thank you Charlie
You are a calming voice.

 

[iolaire]

My concern for you here is the trade off of major surgery and its risks, versus the pain you experience now.  And that versus the low risk (but higher lifestyle change) of say switching to HD?  If you were on HD would that solve the pain?

[cassandra]

Hi OldKritter I had both kidneys removed 35 years ago. I remember the recovery time being pretty long, and there was pain. They removed mine through my belly. How are they planning of doing yours? I don't remember any adverse reactions.



Nb. I was on PD while I still had a bit of my dad's kidney in me. I still peed. Have you been told you can still do PD after a bilateral nephrectomy?


It really is major surgery. Is it a possibility to reduce the liquid you're carrying (maybe less pain?) and a bit of diet restriction and keeping your kidneys?


Lots of love, wisdom and strength, Cas

[LorinnPKD]

Hi there!  I haven't had my kidneys removed yet but it's something I'm researching.  For me, it may be within the next six months to two years because I'm a shortish person with PKD kidneys that are each football sized.  I'm getting to the point where I'm looking forward to it.

I never did PD because I was worried I would quickly run out of room, and I like to swim anyway, so I'm on hemo.

I'm asking so many of the same questions.  It seems that, like with so many kidney things, everything varies!  I've been asking my neph and my transplant center for guidance on *when* I should do it -- that is, what's the best timing to get the most out of my partially functioning kidneys but avoid too much pain or complication. I've been on hemo almost two years now but I still have some remaining fluid function and apparently full or nearly full potassium function, so I know that's incredibly valuable, but there'll be a point when the size and the pain outweigh the moving target of diminishing function.

The short answer was, you know the amount of pain you're in, you know your body the best, you know your threshold for dealing with the changes in restrictions, you know your comfort level with surgery, so you tell us.  So I have a standing agreement with my neph that we re-evaluate every three months.

So, recovery time: From what I can tell, most people spend a few days in the hospital after open surgery, then they go home where they have to be incredibly gentle with themselves for several more weeks -- like no lifting anything heavy, no overexertion, etc.  The timing depends on your general health and how the surgery itself happened to go.  There's also potentially the option for laparoscopic, where they make an incision and a few holes instead of a big open incision.   Because the incisions are smaller, there's a much shorter recovery time.  The scars look kinda unusual but I'm not much for wearing a bikini, so, it'd be fine.  I'm not sure which I'd do, or whether they'd both be covered by my insurance, but it might be good to ask your neph if they have a preference or insight.

The surgery itself and the recovery are pretty major.  Your blood pressure might drop precipitously after losing such a big percentage of your body weight and your heart no longer having to sustain the flow for those giant kidneys, and at 118 lbs that's something to ask your doctor about.

Another option is just having one taken out to give yourself some extra room and hopefully retain a little function.

I'm still researching on the whole gland connection stuff.  One person who had a double nephrectomy said that the adrenal glands, the ones that mange fight-or-flight, are connected to the kidneys, so without that, they felt a little more Spock-like?  I, of course, am a beacon of calmness and good sense, so that would not be a factor for me (ha ha), but it sounds like that might affect people differently.

Wishing you good luck as you find more answers and decide!

[iolaire]

The short answer was, you know the amount of pain you're in, you know your body the best, you know your threshold for dealing with the changes in restrictions, you know your comfort level with surgery, so you tell us.  So I have a standing agreement with my neph that we re-evaluate every three months.

On thought I had well reading this - is yes its major surgery so another thing to consider is if now your bodies are better prepared for a major surgery as say five years down the line?  From reading the LoninnPKD's description it sounds like at some point it will not be a choice, so is now the time you (both) potentially are as healthy as you will every be?

[Whamo]

There's a nutritionist specialist on the internet that has a youtube section (free) about cysts.  He says iodine is helps.  Check it out.  Do a search on kidney and cysts on youtube and it should pop up.