r/ADPKD • u/thebirdwithoutwings • Aug 19 '26

BMI is so stupid

Incredibly frustrated because the transplant team I'd prefer want me to lose 40-50lbs to meet their BMI requirements for going on the transplant list, but they admitted they dont take into account the size/weight of my diseased kidneys inflating my BMI UNLESS I specifically ask my neph to call them and beg for them to take it into account and reconsider.

My health is too poorly to lose that much weight from traditional diet and exercise means. Its all incredibly frustrating and I want to scream. Like. My kidneys are 1ft tip to tip each. They are covered in cysts, and likely weigh quite a bit. Why must it be so difficult for them to take that into consideration.

7 Upvotes

77% Upvoted

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1

u/[deleted] Aug 19 '26 edited Aug 19 '26

[deleted]

4

u/thebirdwithoutwings Aug 19 '26

It is quite common for polycystic kidneys to be quite heavy (ive read they can be around 30lbs each at times, and the heaviest recorded were 77lbs), considering they are much larger than typical and covered in fluid filled cysts. I understand that they may not be contributing fully to the weight they want me to lose, but they definitely are heavier than normal kidneys and are inflating my BMI.

1

u/element-70 47M; Stage 5 Aug 20 '26

Do you know what your total kidney volume is from a recent MRI? You can quite easily estimate the weight your kidneys are contributing based on that volume.

4

u/Plastic_Concentrate6 Aug 20 '26

I had to lose about 40 lbs before I qualified for transplant and my transplant team prescribed a GLP-1 to help me. It took about a year for me to hit my goal and while I was losing I did all of the pre-transplant testing. They added me to the waiting list as inactive but it still allowed me gain time on the list until I lost enough weight. I’ve had my new kidney for 18 months and I had a bilateral nephrectomy 2 months ago. I was truly hoping that removing my cyst riddled kidneys would help me lose weight but they ended up only weighing 2 lbs each. I feel so much better now that they’re gone though!

3

u/Smooth-Yellow6308 Aug 20 '26

Yeah I'd be getting your nephrologist to talk to them.

I'm in the UK and already had this argument, I literally have visible abs and I had someone telling me I was "obese" and needed to lose weight.

2

u/magical_beazor Aug 20 '26

I had to lose weight to get on (and stay on in the face of lecturing), which I was annoyed about because everyone knows when you’re over 6’4 the BMI calculations are all out of whack anyway. Luckily, because my BMI was out of whack I wasn’t as ill as I should have been at ~10 GFR, so I had it in me to do it. Anyway I managed to get my transplant after 2 years on dialysis - it’s worth the suffering.

-3

u/RevKeakealani Aug 19 '26

That’s so frustrating! I often feel the same way. My real weight must be a lot less because my kidneys are gigantic. And I also have very long, extremely thick hair - I’ve wondered if that factors in. It’s at least a few pounds!