Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Little moan

I realise our am lucky only to have PKD. There are a lot of families dealing with worse diseases and illness.  My post is really vain and I feel like a phony posting on here. I am 37, I still have good renal function but my kidneys are quite huge now. Over the past 8 weeks I have been asked on several occasions about when my baby is due. I find people staring at my abdomen quite a lot. It is just all a bit embarrassing.  I can't seem to find clothes that hide my belly well enough and I have thin legs which emphasise it more.  I guess it would just be nice to hear from some kindred spirits to help me laugh it off. 

Replies

lovemyfive
lovemyfive

I'm struggling to see any funny thing about it. I wonder how much longer it's going to be till I'm asked if I'm pregnant...I'm 41. Great function too.
Chewitt
Chewitt

I totally sympathise with you Donna. It's not vain to be concerned about this issue, by the way. This is not an easy thing to deal with.

The growth of my kidneys and liver accelerated after my second pregnancy (age 33) and that's when the, "When are you due?" queries started. I wasn't diagnosed until I was 40 so spent years trying to tone my abdomen. For the last ten years I've had the question frequently, followed by looks of disbelief when I say that I'm not. Some people are very embarrassed and apologetic, others ask probing questions about my health. I usually brush it off now as I'm so used to it. I feel more embarrassed now than I used to because I'm 50 and feel people are judging me for being too old to be pregnant, even though I'm not! My husband says I should take it as a complement that I still look young enough to be asked the question.

Like you, I've spent years trying to find wigwam shaped tops to cover up the belly, and eventually had to resort to maternity trousers to avoid flappy legs whilst accommodating the belly. I, too, have thin legs and arms, so look like a space hopper with limbs. My abdomen is now so large that there's not point trying to hide it. I'm just glad when I can find something to go around it. For years I've been forced to buy new tops every summer to accommodate the growth, but if you don't have liver involvement, you may not be so badly affected. My liver presentation is rare. I choose loose tops, with vest tops underneath if the top comes too low, and cardigans rather than jumpers so that I can just leave it open at the front. Avoid fussy styles with frills and bows and patterns are good for confusing the eye. Concentrate on the positives: we're not fat all over like many people; we're still mobile and we still have our minds in tact. Have your answer ready for the dreaded pregnancy question so that you can deal with it quickly and move on. Remember, you are not alone. Some years ago, another member of this group was experiencing similar difficulties and we formed the WWF club: Wide Waisted Friends. She's now had a transplant and is doing very well with her new body but those of us still struggling with this can still support each other. We can do this.
Donna2017
Donna2017

Thank you for this reply. It is reassuring to be reminded that there are other women dealing with this issue. I do know there are many of us but it helps to share.
InheritedPKD
InheritedPKD

This is a huge issue for me (at age 59). Mentally I know appearance should not be that important, but it is still difficult. Before I started getting the PKD belly, I was so painfully thin I always wore clothes that were belted or narrower at the waist because they were more flattering and now I cannot wear things like that at all. I have a polycystic liver as well.
Chewitt
Chewitt

Hi InheritedPKD,

SNAP! What is your kidney function like, and how big is your liver? Have you had any treatment? I'd be interested to hear more about how you cope with this double whammy. Being very thin, I'm very conscious of my huge belly and others noticing it (can't fail to) because I can't just pass as overweight. It's hard at times, but I try to focus on the positives.
FullyHalfEmpty
FullyHalfEmpty

I too am thin and have the very large polycystic kidneys and liver. I don't have any liver failure or pain, but that's what everyone always comments on any time I have a scan "wow, your liver cysts are huge!"

I have found that wearing jeggings and leggings with tunic type shirts hides the belly very well (here is a pic of something I wear almost always) https://imgur.com/11eJcCh
Chewitt
Chewitt

That's the sort of thing I wear, too, though I'm finding it increasingly difficult to find tops that are large enough to accommodate my belly without swamping me (the rest of me is a much, much smaller size). I wear maternity bottoms, but even then have trouble keeping them up. Ther's no hiding my huge abdomen these days.
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