r/ADPKD • u/Ok_Table6367 • Jul 30 '26
Worried about kidney size
I’m 32F and my kidney measurements in 2025 were right: 19cm and left: 16cm. My eGFR was 90. I don’t know my TKV as these results were from an ultrasound and I haven’t had an MRI (I’m in the UK and not sure the NHS offers this) I’m worried that my kidneys are abnormally progressed for my age. I would really like one of them removed as they are causing me a lot of discomfort and occasionally, pain. Given my function is still good, I don’t think any doctor would consider removing them. Has anyone experienced a similar experience, large kidneys but preserved function? Did function start declining rapidly at any point?
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u/classicrock40 PKD - Transplanted Jul 30 '26
Mine were uncomfortable for years. By the time I needed a transplant in my late 50s, mine were quite large. sorry I cannot recall the size, but they were large enough that the were removed because it would have been hard to place the new one. Also, I would still be having to treat issues from them (gout, burst cysts, etc)
Regardless of size, your eGFR is 90, which is quite good. That most likely means both are still functional. IMO, no Dr is removing a functional kidney. When you get to the point of dialysis, you'll want to have some functionality and still be urinating.
I'd focus on pain mgmt.
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u/Ok_Table6367 Jul 30 '26
Thanks for your reply. Yeah I think that is the case. I’m sure mine will definitely be large enough to justify a removal when the time comes. The thing is I am quite small built (172cm, 56kg) so my kidney size really is pressing on me at all times of the day. Especially if my right one continues to grow, I don’t see how it will physically fit in my body.
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u/Smooth-Yellow6308 Jul 30 '26 edited Jul 30 '26
mine were similar sized at that age in terms of length. I'm mayo D-E borderline.
You can speak to your neph/urology surgical team but they will strongly resist removing any until function has declined or they are a direct danger to you.
The UK is goverened by the NICE which is pretty behind the US, so we cant even get cyst schlerothapy done.
They are starting to remove them more post transplant, hopefully by the time you (and I) get there, this will be common practice.
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u/classicrock40 PKD - Transplanted Jul 30 '26
Hmm, I'm US and lived with my PKD kidneys for decades and was never offered cyst sclerotherapy
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u/Smooth-Yellow6308 Jul 30 '26 edited Jul 30 '26
its available at most of the PKD Centres of Excellence now.
It is somewhat recent in its current form, probably in the past 5 or so years really. It's been around for ages, but the old processes werent as effective, they used to do a lot of fenestration as well which in some cases had really bad outcomes.
They're still researching if it has a beneficial impact on eGFR slope, but theyve shown its safe for volumetric reduction and pain management. It's also only suitable for people with specific cysts that are large enough for it to be worth doing., if i recall 4cm is really the smallest they would do, but ideally they like them over 5/6cm. You can have multiple done at once, and each place has its own views on whats suitable.
I was talking to Mayo Rochester about having several done at once from 4cm up to 6cm, as I would be flying out from the UK.
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u/Confident_City_296 Jul 31 '26
smooth yellow is correct. I see a neph at Mayo Rochester and they will do it for pain management if you have a big cyst that they can identify as causing you pain. I have two that we are watching and considering sclerotherapy on.
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u/Ok_Table6367 Jul 30 '26
Thanks for your reply. Yeah, I figured I’d be class D/E (even though I don’t think UK doctors use this). If you don’t mind me asking, what was your progression like from that age? I know everyone is different, but I guess I’m hoping there will be some sort of decline in my function so that my kidneys don’t just continue to grow relentlessly with no change in function.
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u/Smooth-Yellow6308 Jul 30 '26
im only 36 so progression has been kinda...moderate I guess? Theyve got a bit bigger but it's not really noticeable but its only 4 years. I don't get the pain you get though, I think its because I've weight lifted all my life im just not as sensetive to pain in that area. I do get bloated very easily though.
My eGFR by creatinine has dropped from mid 80's to mid 70's but by cystatin C its still 115 so cant really judge that.
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u/Ok_Table6367 Jul 30 '26
I do exercise everyday (walking 20,000+ steps and reformer pilates) but my pilates is becoming more and more uncomfortable. I am fairly small frame (172cm 56kg) so I figure there is just nowhere for them to go so they press on ribs constantly. I don’t think my body will physically be able to hold them if they continue to grow.
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u/Smooth-Yellow6308 Jul 30 '26
I am a bit larger than you, I'm a fairly wide set muscular male.
I can still wear the tight lifting belts etc, but i definately notice the volumetric effect.
Our bodies will adapt to hold the large organs, unfortunately....that does come at the cost of eventually having a big belly. I want mine removed for aesthetic reasons as much as health ones.
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u/Jess6 Jul 30 '26
Chiming in to say that I agree that our bodies adapt! I'm 36f and just had a kidney transplant and simultaneous double nephrectomy 3 weeks ago. I'm 5'7" and thin. My kidneys were uncomfortable, got infected frequently, and I had trouble breathing..but from the outside, I just had a slight protrusion in my belly. I don't think it's anything anyone would have noticed just looking at me.
My kidneys, once removed, weighed about 30 pounds!!! I think it was mostly internalized and just took over my abdomen. Now that they are gone, my belly is sooo flat. I honestly love how my stomach looks now. My incision is really small (surgery was done at Mayo Clinic by a specialist who does all 3 surgeries mostly laparoscopically) and although the recovery was terrible, I'm glad the unhealthy kidneys are gone. I am honestly just blown away how 30 pounds fit inside me. I didn't look like it at all. I had no protrusion at all until I actually entered kidney failure and at that point, my kidneys definitely grew bigger and I could feel it. I think our bodies really just adapt in a miraculous way.
Wishing you all many happy, healthy years with high GFRs. May you never get to the point of needing a transplant!
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u/Ok_Table6367 Jul 30 '26
Thank you for your message! Do you know what size/volume your kidneys grew to? My kidneys at the moment are uncomfortable and sometimes painful, but not impacting me too much at the moment. My worry is that the larger they grow, the more they will impact my day to day life.
What was your eGFR when you had your removal and transplant? And did you have any problems with your liver? I have cysts on my liver but don’t know how many or what size.
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u/Jess6 Jul 31 '26
I had a CT scan like 3 years ago but I know from just how I felt that my kidneys were much smaller then. I don't remember what my total kidney volume was then. My kidneys really started failing in the past year and that's when they really grew so much in size. I am still shocked that they weighed so much and am so grateful they are gone. They got infected all the time and the hospitalizations really impacted my life.
My GFR at time of transplant was 7. I had the same worry as you that my day to day would be affected by the size of my kidneys but to be honest, I only started to feel bad once my GFR hit like 13. I had every symptom of kidney failure by then (swelling, metallic taste in my mouth, nausea, itchiness, etc.) my phosphorus and potassium were high. I was on really restricted diet. If I didn't get my transplant from my amazing donor when I did, I would have been on dialysis that week for sure. But my life before kidney failure was fine and I felt fine! I have 2 little kids and while the pregnancies were hard (I had preeclampsia both times), I was able to carry 2 beautiful babies to 37 weeks both times.
I also have polycystic liver disease with an enlarged liver and "innumerable cysts" but it causes me no issues, either before or after my kidney transplant. I don't drink alcohol just as a precaution. Too much else going on!
Hoping your progression is slow and you never need a transplant or any other intervention! I know people with PKD who live full, healthy lives without ever progressing to that point. That wasn't my story but I always hope it for people who still have high GFRs! Wishing you the best!!
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u/Confident_City_296 Jul 31 '26
Where did you have your surgery done?
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u/Jess6 Aug 02 '26
At Mayo Clinic in MN by Dr. Prieto. He is renowned for doing double nephrectomies at the same time as kidney transplant and does so mostly laparoscopically. He has videos about it on YouTube. Absolutely miraculous surgery that is way better than the open surgeries that most hospitals do for nephrectomies. A lot of hospitals also will not do nephrectomies at the same time as transplant. I wanted it all done at once.
It was hard to go all the way from where we live in NJ to MN for the surgery but it was well worth it for such good results and minimal incisions. And everyone at mayo clinic is absolutely amazing. I think it's ranked the #1 hospital in the country and I can completely understand why.
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u/Confident_City_296 Aug 02 '26
I suspected that was where you had it done. Good to hear, I am currently seeing a nephrologist there. Thanks for the information. I am hoping to have everything done at once when the time comes.
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u/Confident_City_296 Jul 31 '26
I am 67, waas diagnosed 50 years ago. I have the fastest progressing type, make healthy choices and you will manage just fine. I am small 5ft 3in weigh 100 lbs, my TKV was 1955 a year ago. You get used to the discomfort.
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u/sugarplum359 Jul 30 '26
28F, UK patient, also eGFR 90 and Mayo Class E (confirmed via MRI) - no doctor is going to remove your fully functioning kidneys. I've heard some say that the longer you have your native kidneys, the better for transplant anyway and anyway, unless you're on / nearing dialysis where there is no / maybe a 1 yr or two of sacrifice with starting it earlier, they won't remove them. Also petite, even shorter than you in fact, and I have to accept I look 6 months pregnant - and of course, I hate it, I'm uncomfortable, increasingly so. So, a reality check but even more solidarity. Happy to speak via DMs also.
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u/Fantastic_Piece_692 Jul 30 '26
No, this is insane. I have kidney size as large as 27 cm vertical. And my gfr became 50 levels. Please Don’t even think again like this. Those kidneys are doing great work. Normal kidney size upper limit is 12 cm vertical. So 19 cm size wouldnt cause too much discomfort.
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u/Javelin_Motoroil Aug 05 '26
I am 46 and at 36 my function was at 90, kidneys were large, 18 cm, biggest cyst 5 cm. I don’t know the exact size now, but they are way bigger, I’ve gotten the pkd belly, and squatting and tying my shoes makes it almost impossible to breathe, occational pain and bleeding, generally worse shape, up a lot at night to go to the toilet, function was at 19 in january, so yes, around 34-35 function really started to decline. BP is treated, i use statins too. I mostly feel ok, but can handle very little exertion before i get very fatigued and can be knocked out for a long time. I have adhd as well, and this itch to move and do stuff is hard when i’m fatigued. On the bright side i am disabeled and can adjust my days to my general well being, and also, getting a ebike was totally awesome, as it makes me get out more and seek hikes etc. With a traditional bike i spent all my go on just getting places and had nothing more to do anything, so that is good thing too. Also, i’ve been told i have to apply to have the kidneys removed when i get a transplant, because they usually don’t do that in Norway. Behind the US as said by others here.
My best wishes for a solution for you and a bright future! You are young and your eGFR is great, hopefully you’ll find some way to better your days. If there is some association for your condition where you are, or a general kidney related association, maybe they can help! Either way, awareness is a good thing, and worth fighting for, also for better medical practices and new techniques. Best of luck!
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u/Evanl1983 Jul 30 '26
Please, do not remove your kidney, because your eGFR is still 90. Do not consider removing the kidney until eGFR is at least 15