polycystic kidney nephrectomy

[PostivelyJo]

hi I’m 2 weeks post op from having an extremely uncomfortable polycystic kidney removed and I extremely glad I went through with the procedure, encouraged by members on this forum who gave me the courage.

Thank you for the support.

Jo

[Bassetmommer]

Take care of your self. Best to you.

[PostivelyJo in reply to Bassetmommer]

Thank you

[GardnerADK]

Hello Jo, Thanks for letting us know you are happy with your decision. I am happy for you that you feel good. My husband had his kidney transplant 11/2018 due to PKD. He has his native kidneys. What symptoms led you to have this surgery?

[PostivelyJo in reply to GardnerADK]

Well I also have Polycystic Liver which is my main issue . There is a possibility of needing a liver transplant if it continues to grow. (My kidneys aren’t big for polycystic. The one removed weighed just under 1 kilo )

The symptoms I experienced were of fullness and uncomfortable digestive issues - I was barely eating due to lack of space with my stomach and losing far too much weight.

Symptoms were relatively minor in comparison to some who suffer pain and infection …but with the complexity of the liver involvement I have very little real space in me .

I feel so much better. Thank you for you good wishes.

[Tashikat in reply to PostivelyJo]

Great news!! Its such a relief…& so worth it. Hopefully your liver will remain strong. All the very best wishes to you!

[PostivelyJo in reply to Tashikat]

Thank you

[GardnerADK]

Hi Jo, Thanks for explaining the details. I wish you continued good recovery from the surgery and if you do need a liver transplant; that occurs in a timely good way for you too.

[PostivelyJo in reply to GardnerADK]

Thank you

[PostivelyJo]

thank you for your good wishes . I hope your husband does well too.

[GardnerADK]

Hello PostivelyJo, Thanks for your kind caring words. I've written in the past years on the difficult journey my spouse has encountered after his 11/2018 kidney transplant. His life and what he could do before transplant was better than since the transplant surgery for many reasons, even now due to medication side effects some people have taking antirejection medications and some people do not. The journey has not been a good one. Adding covid19 in the journey has made things down right severely difficult for us both. I'll just leave it at that since so many people writing on this blog/website have superb stories to tell. I wish you a superb day /week ahead.

[VeroBeachTransplant]

Hello and congratulations!

I had polycystic kidney disease but they didn't remove either of my kidneys, as they were not infected - just had the cysts. Just curious as to why they removed yours. That is indeed very uncomfortable and my surgeon told me it was too invasive and not necessary.

Did you have other issues? Best of luck to you! I'm in 12 years now and doing great. I wish you nothing but long-term success.

Craig

[PostivelyJo in reply to VeroBeachTransplant]

Hi , my only issue is fullness and gastric problems. No infections or pain. I have polycystic liver too which is the major problem. Without that I think I could live with the polycystic kidneys. It’s double the normal size but functioning really well so they won’t transplant it , yet.

So I think my hospital was happy to create space for me to feel more comfortable.I was thrilled.

The kidney only weighed 1 kilo which surprised me but it’s made a huge difference to my comfort.

It is quite a big operation with a high level of discomfort but I was home after only 3 nights in hospital and very active straight away. The surgery was laparoscopic

I hope you continue to stay well.

Jo

[EmTexas]

Sharing to, we’ll share.

I will have my native kidneys removed in a couple of weeks. I was so excited to read you were only in 3 days then saw you had laparoscopic surgery. Laparoscopic makes healing so much easier. Mine are too big for that. So an open bilateral nephrectomy it is. I am post kidney transplant by 3 1/2 yrs. My native kidneys create some discomfort and I’ve had several cyst driven infections of late. Apparently they’re pressing against my other organs. Candidly I’ll need the space at some point - I too have PLD as well as PKD. Gotta assume I’ll need another kidney eventually, and although I’ve good liver function I’ve multiple cysts that are 6 or 7cm so a liver transplant is a possibility. I always have digestive issues and can’t eat much. It is not an urgent surgery but timing works for now. They expected my kidneys to shrink or slow growth post transplant and that’s not happened - quite the opposite. Not concerned about surgery. But recognize pain, post surgery, due to abdominal cut won’t be super fun. As with all surgeries just a process….and with time it heals. So glad you noticed lack of discomfort immediately. I can’t recall not feeling kinda bloated and full so that’ll be kinda fun

[PostivelyJo in reply to EmTexas]

Even without laparoscopic surgery is now so advanced. Im sure you will be fine I didn’t even bruise. I had 4 ports for instruments and kidney was removed by hand ( hand assisted laparoscopic ) so I had an 8 cm cut below my tummy button which didn’t really hurt that much. I had no drains or central line neck worst problem was bloating from the CO/ they fill abdomen with to assist surgery and constipation caused by painkillers. .I want the other one out now.

you will feel liberated post op which helps the healing and general mental health. Good luck with it all. Let me know how it goes

[PostivelyJo in reply to EmTexas]

Have you read the response from Powerfalcon to me . Might be of interest .

Jo

[Powerfalcon]

Hi, I had a double nephrectomy/transplant in Dec 2019. When Covid hit, I ended up in front of Zoom for hours a day for work. My only issue/advice is I wish that I had done Physical therapy for my core muscles because I had a lot of mishaps due to balance and abdominal weakness.

Now I am strong and feeling great due to PT this past summer and now pilates. What a difference. I am not sure about one kidney removal, but with two, the surgeon has to take out all of your organs, then take out the polycystic kidneys, and then put back all of your organs. It makes sense that your core muscles would be affected.

Now, I feel much better in my own skin and clothes. I am glad I did it despite everything I went through and so grateful. I am 4 years out and it gets better and better, Best

[EmTexas in reply to Powerfalcon]

The dreaded exercise :). Yup, already plan on going back to ny personal trainer and Pilates as soon as doctor allows it. (I do both now - I might maybe maybe have muscles somewhere in my abdomen although they are a bit buried ahem…let’s hope it all comes back). Gosh I hate that answer lol. But yes…damn Pilates. Which is really hard btw.

Thanks. Good reminder.

[EmTexas in reply to EmTexas]

I had my surgery 2 weeks ago now. Surgery was fine, but I developed an ileus so was pretty uncomfortable, make that super uncomfortable. The incision hasn’t bothered me one bit, but the immense swelling due primarily to my distended small intestines sucked. I also developed tacychardia which meant I had a bazillion tests as they were worried about clots etc. . I ended up in hospital for 7 days. So much better once home. This past week has been better day by day and I’d stopped taking Tylenol or anything stronger 3 days ago. My digestive system is not quite on the right step but I’ll venture it’ll be fine by next week. And due to that and the aforementioned faster heart rate, I’m struggling a little with dizziness and getting out of breath. Doing some walking and starting to stretch out the time each day. I’m eager to lie on my side and for the remaining surgical swelling to go down but otherwise not sure I’d need even half the time the doctors were saying for recovery. Which is great news. Also for what it’s worth my transplanted kidney creatine numbers were fabulous my entire hospital visit. Eager to be feel the benefit of the absence of my PKD pain, but not quite there, yet….

As an aside, I asked my surgeon to take a picture of my kidneys. Two surgeons held them like babies for the camera. The most macabre and also funny picture. Highly recommend!

[PostivelyJo in reply to EmTexas]

I wanted a photo but didn’t get one. Yours sounds epic. Well done for getting through this. So much bigger than my op. You are on the road to recovery and a new you. I’m thrilled for you .

[PostivelyJo]

wow . Well don’t you that was a big operation . I’m so glad you are thriving . Exercise is key. I had a year to get got for this op so I was working out consistently and I think it helped, although my old was laparoscopic and not on the scale of yours.

Thanks for your message