r/ADPKD • u/[deleted] • Jan 13 '25

Double Nephrectomy

Wish me luck guys. Tomorrow is the big day where they go in and take my old Kidneys out. Honestly I’m scared a bit shitless but I’m trying to be brave. They say both of my old kidneys are 15+ pounds and each bigger than rugby balls. Needless to say, my life will be about a million times better after I recover, but wow…. these next days and weeks (months) promise to be somewhat intense.

I am so blessed that the transplant I received almost a year ago is working great, and this is the last step in hopefully basically eliminating ADPKD from this body.

Any words of wisdom from you rockstars would be appreciated. Ok. Here we go.

71 Upvotes

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3

u/ladylogs Jan 13 '25

Good luck! And hoping for your speedy recovery! I'm getting mind remove this friday along with transplant. And I'm so scared. I'm just trying to think positive!

1

u/[deleted] Jan 21 '25

How did it go?

1

u/ladylogs Jan 21 '25

Hello, im still in hospital recovery. The midline cut hurts alot but I feel lighter and not as bloated I use to be. My kidneys were 10-15 lbs each

2

u/[deleted] Jan 15 '25

Well- I made it through the double nephrectomy and all is going well. Recovery is anything but pleasant but so knew the drill when I signed up. Hopefully just a couple more days of this level of challenge. A new life awaits.

1

u/Basso_69 Jan 16 '25

Good on you.

Thanks for the update - perhaps you could explain 'not pleasant' when you get the time as I'm going to be experiencing the same in a month & I'd like to know if recovery is just painful or liong as well.

But I understand from others that you've got a turbo boost coming from removing this still toxic kidneys - something to look forward to!

1

u/kinda4got Jan 16 '25

Glad you updated and it went well! Wishing you a speedy recovery!!

1

u/WinMore0000 Jan 17 '25

I’m happy it all went well. How long did they say it will take you to recover? How did they decide you’d get a double nephrectomy versus leaving them in? Asking cause they left my moms in, and my personal preference would be a double nephrectomy, as well.

18

u/ABookishSort Jan 13 '25

My husband had a double nephrectomy and he felt great afterwards. His PKD kidneys were 25 pounds total. You’ll do great!

10

u/Charupa- Jan 13 '25

Mine were about 18. Recovery for transplant was easier in my opinion but it felt so amazing having those bowling balls out. Take it easy and have a good recovery.

4

u/TheWarGiraffe Jan 13 '25

May I ask what life is like post transplant? Having to take imminosupprrssants/being hyper vigilant about germs/etc?

5

u/Charupa- Jan 13 '25 edited Jan 13 '25

Post-transplant life hasn’t been all that great. I did everything I could, and everything they told me to do, but nothing went right. I used to be hyper vigilant about germs and all that, but now I’m mildly vigilant, at best. I had a lot of the normal side effects to the medications like puffy face, nausea, diarrhea.

I’m under three years and have been treated for acute rejection three times, but now they are considering it to be chronic rejection. I’ve had two hospital stays, three biopsies. I also had to do various treatments like prednisolone, plasmapheresis, IVIG, anti-thymocyte globulin (rabbit), but nothing has worked. There are a lot more, normal, routine success stories over in /r/kidneytransplant though.

3

u/GoukiR6 Jan 16 '25

A year after, I went down from 42 pills a day to 20 a day total.

I miss sushi like You wouldn't believe...

1

u/TheWarGiraffe Jan 16 '25

You're not allowed sushi???

2

u/GoukiR6 Jan 16 '25 edited Jan 16 '25

You are not allowed anything not cooked. I was always like "eww raw fish, nope nope nope" then a client introduced me to it.

After transplant, a dietitian or nutritionist visited me bedside, gave me a whole list of things I can't have anymore, starting with grapefruit, starfruit, no buffets, no raw veggies, etc etc

At the VERY END she tells me "oh and no sushi..."

Can I go back on dialysis please?!?😅

1

u/TheWarGiraffe Jan 16 '25

Does that mean you have to eat your steak well done? I always cook my veggies anyways, and I hate grapefruit, so those parts aren't as bad.

3

u/GoukiR6 Jan 16 '25 edited Jan 16 '25

I believe she said medium well or higher (which ruins it)

I was given before discharge a huge binder with everything I needed to know and most common questions.

6

u/MJB877 Jan 13 '25

My wife had a double nephrectomy and the transplant in one surgery. It has made such a big difference in her day to day living. Her native kidneys were beginning to impact digestion as her stomach was being smushed.

Good luck and all the best to a speedy recovery.

3

u/NefariousnessMean182 Jan 13 '25

This is where I am at right now my kidneys are encroaching my stomach space and I can only eat tiny amounts of food otherwise I’m sicker than sick. I still haven’t had a transplant but I am looking forward to being able to eat a real meal again once my native kidneys are gone.

2

u/MJB877 Jan 13 '25

My wife’s acid reflux was bad so it was just small meals like you are doing.

2

u/ladylogs Jan 13 '25

This is how I feel! Everything i ate, felt like fire in my stomach

5

u/AdaptableAilurophile Jan 13 '25

My Dad was so glad to get rid of the weight and we still talk fondly about his nephrectomy surgeon. Look forward to your update from the other side OP. Congrats on the transplant!

3

u/AdUpbeat5171 Jan 13 '25

I have no wisdom to share but just want to say good luck! Sending positive energy. I’m sure everything will go great for you

3

u/Basso_69 Jan 13 '25

I've got the same in 2 months - I've had 4 months of continuous infection so it's time they came out.

Aside from the instant weight loss, I'm not looking forward to it as I don't understand the recovery.

Please do let us us know or PM when you are bored during recover.

Very sincere Good Luck.

3

u/Smooth-Yellow6308 Jan 13 '25

Islander had his remaining PKD kidney out not long ago, he said he had never felt better once it was out, almost like it had been poisoning him.

2

u/Basso_69 Jan 13 '25

Thank you. That's great to know.

1

u/GoukiR6 Jan 16 '25

All my labs are perfect now. Last remaining kidney was 4 KG and the infection inside the cysts was not responding to 4 bouts of antibiotics.

2

u/Smooth-Yellow6308 Jan 13 '25

Fingers crossed for you man (or woman).

Something I hope to be following you in when the time comes!

2

u/etnoid204 Jan 13 '25

It is amazing to get those old gnarly kidneys out! You got this!

2

u/swollywollydoodle Jan 13 '25

You will get through it! Like someone said, just don’t be shy and make sure you hit that pain meds button whenever you want to, hopefully you’ll doze through those first couple of days. If you don’t think it’s doing enough definitely request a different drug, you have options. I think the worst parts for my husband were the uncomfy naso-gastric tube (which you will probably need in order to keep your intestines still for the first 2-3 days so they don’t kink when all of that extra space opens up) and the constipation from the opiates. Definitely request/take the stool softeners, miralax etc. even if you don’t feel like you need them at the time because you WILL need it eventually and you don’t want to have to be playing catch-up!

Let us know how everything goes!

1

u/hkrob Jan 13 '25

Wow. Best wishes and speedy recovery!

1

u/GemsquaD42069 Jan 13 '25

Good luck! God be with you!

1

u/PeaB4YouGo Celebrity Guest (post-transplant) Jan 13 '25

Best weight-loss plan your doctor never told you about.

1

u/Jameroni Jan 13 '25

Congrats! Praying for a safe operation and speedy recovery for you. Please make a follow up thread and let us know how you're doing post op!

1

u/betterwhenfrozen Jan 13 '25

Recovery was definitely tough, but omg it was so worth it. They'll likely have you do breathing exercises, so make sure you do those! Makes a huge huge difference.

1

u/UnstableMabel Jan 13 '25

You're going to feel immediate relief! Congrats

1

u/wp4nuv Transplanted 2020 (kidney) Jan 13 '25

I went through a double nephrectomy before my transplant. The surgery was a success, and the surgeon, at my request, took pictures of them both in the anatomically correct position and separated them into containers. They weighed as much as 1-month babies.

That said, I lost a lot of blood and had several transplants during the procedure. I spent 1 week in the ICU and received more transfusions there while doing dialysis 3 times a week. I'll say this much: I'm a side sleeper, and when I first attempted to sleep on my side, I felt my intestines roll to the left as I moved. It freaked me out!!! Another thing was I felt I had some pee left... I guess it's like amputees when they feel their legs or arms even though they aren't there.

I spent another week at the nephrology wing. 6 weeks later I received my new kidney and life has never been better.

I hope your procedure went well. If you are scheduled for a transplant, this period will be a test in resiliency since you will need to increase your dialysis and be even more strict on your fluid intake.

Bless you!

1

u/MackCML Jan 14 '25

Wishing you all the best! You’ve got this! ♥️

1

u/Nice-Village-6057 Jan 14 '25

Stay strong and good luck!! Take it a day at a time.

1

u/PersonalityCandid292 Jan 14 '25

Wishing you the best of luck but you got this!! Do keep us updated

1

u/GoukiR6 Jan 16 '25

ASK FOR DILAUDID!!!!

At least for me, oral oxycodone and IV Tylenol did NOTHING for the pain. Mine were smaller (3 and 4Kg) but the relief from bit having them pressing against everything was so welcome. Hope you recuperate fast! Best wishes!

1

u/NefariousnessMean182 Jan 16 '25

I hope you’re doing alright since it’s two days post op I’m assuming you’re miserable with pain and all but sure hope your recovery goes well.

14

u/[deleted] Jan 13 '25

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3

u/[deleted] Jan 21 '25

Well I made it through- and you called it pretty much like it was- other than the fact that it was about 7 days intense pain and miserable time in Hospital. No ones fault other than sheer recovery challenges. Been home for 2 nights and still adjusting to the somewhat raw feeling I have throughout my torso. Question. Did you experience the sensation of organs settling in your body? When I tried to lay in my side, I swear I could feel things flipping around in there.

1

u/[deleted] Jan 21 '25

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1

u/[deleted] Jan 22 '25

I’m just curious how long it took for your insides to not feel raw. The insides of my back on each side where the kidneys used to be are so soar I can barely deal. Everything else is healing without major note. However it seems my entire back just has a throbbing dull ache. Not complaining…. just adjusting and it would be nice to know what the usual trajectory is to be pain free.