PKD Transplants: Did you remove your second kidney?

@stephanierp, I'm paging fellow PKD transplant recipients @jolinda @nimalw @jennifer0726 @kayb @grady1 who may have experiences about the decision making regarding keeping the polycystic kidney post transplant or removing it.

Stephanie, has it been suggested that the flank pain would resolve if the kidney were removed? Do you have concerns about undergoing surgery again at this time? What pros and cons are you weighing?

I would definitely have mine removed again! Had the right moved with transplant and the left removed two years later. Both were supposed to come out at transplant but they didn’t have enough time. A cyst on my left kidney burst and I ended up in the hospital with an infection. So second kidney came out and it feels so good to have room inside. Recovery wasn’t bad at all. Highly recommend getting them removed if you can

@colleenyoung Thank you for your kind response and for connecting me with some of the other PKD transplant recipients.
I believe the flank pain would resolve. I will still have some lower back stuff but flank pain would most likely resolve. I do have concerns going into surgery. I found the first surgery - open nephrectomy and transplant - pretty traumatic. The pain was not well managed post-op, and I was left with a very large incision (over 12" across both sides of abs), which made recuperation challenging. The kidney transplant itself was miraculous! Just the muscular/skeletal recuperation that was difficult. Having been a dancer and dance instructor all my life, this has been difficult.
With that said, Dr Prieto has said he will do this next nephrectomy laparoscopically, with hand assist removal, and he believes recuperation will be much quicker. In addition to reducing flank pain, removing the second PKD kidney also has the benefit of reducing the chance of cysts rupturing and causing problems in the future. The last kidney they removed was pretty ugly. I named her Polly. I imagine her cyster is equally attractive:)

@kayb Thank you for your helpful response and recommendation. Hearing from someone, who has been down the road, is so incredibly reassuring. Cyst rupture and infection is one of the things I am trying to avoid by having the second kidney removed. And I would love to have room inside! It is interesting to feel space on my right side, and still feel tight on my left, where my second PKD kidney resides. It is highly reassuring to hear that recovery is not bad, as that is one of my major concerns. Thank you for sharing your thoughts!

I had my second Nephrectomy and a hysterectomy at the same time. Obviously it was painful for the first few days but not too bad after that. Definitely take it easy and don’t lift anything heavy for 8 weeks. One thing I did discover is that the transplant wing is a lot more understanding of the pain right after surgery. The area I was taken to after my left nephrectomy and hysterectomy was not so understanding. Or it was just the doctor I had. He had zero empathy and it sucked having to beg for pain meds 3 hours after surgery.

It’s really only a few days of being hurting , then its just sore and manageable with Tylenol and maybe a pain pill here or there.

I was afraid of how I would do with having such a big surgery while immunosuppressed but my kidney function was 20% higher after the surgery!!!

Hope this helps you! 💚

Wow! 20% higher after the surgery! That is amazing! Thank you so much for sharing this!

I wanted to report that I had my second kidney removed a few weeks ago at Mayo with Dr Prieto. I was amazed by how quickly I recovered! Dr. Prieto used an existing c-section scar, as his point of entry, not particularly handy for him, I'm sure, but so much better for my recovery. I had minimal pain for 4 days and was managing pain with a few Tylenol within 3 days of surgery. I feel so much better not having any diseased kidneys in my body. I can breathe again. (PKD often feels like being pregnant, where you can breathe but everything feels squished). Thank you all, for helping me gain the courage to go through with something that was nowhere near as difficult in reality, as my mind had built it up to be:)

@stephaniep So glad you checked in with us today! I have heard that Dr. Prieto is an amazing doctor, definitely! You're right, we often build up a script in our minds before a procedure, and then find out our experience was not all that we imagined. I know your words are encouragement to others reading here.
Ginger

Congratulations! Dr Prieto removed both of my PKD kidneys at transplant. He is the best! It all was done laparoscopically with the larger incision down low so he is used to doing them from that area. So wonderful to breathe easier afterwards. I am happy for you!

@stephanierp - Thank you so much for sharing your happy news!

Being able to breathe without feeling squished sounds wonderful. I think that anyone who reads your response and is faced with a decision as you were about this surgery, can find a message of Hope in your experience.
Stephanie, How will this new freedom affect your life as you go forward? Will you be able to add any new activities? Do you need to downsize your clothing?

Will you have any kind of post surgery follow up or additional labs?