What is Polycystic Kidney Disease PKD
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 (...
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Hello group. I am new to Daily Strength, although I was diagnosed in 1998 at the age of 24 with PKD. My father was the carrier of the PKD gene; he died at the age of 40 in 1977. At this point, I have normal kidney function and my blood work has been very good. I do experience a lot of pain, discomfort and rudeness from strangers.
My question is more likely to be answered by the ladies with PKD, although if any of you men out there have had similiar situtions, please feel free to share. I am 35, still child-bearing age I suppose, and alreay a mother to 3 beautiful boys ranging in ages (17, 8 and 5). I am often asked by COMPLETE strangers, "when is your baby due?" or "How far along are you?" I already know that my kidneys are VERY large with multiple cysts that cannot be counted, nor can they fit an entire kidney on the screen when I have my sonogram done in the past (approximately 22 inches combined and 16 pounds). Needless to say, I DO look different in my midsection as the remainder of my body appears thin in contrast to my larger belly. Initially my thought process was to use it as an opportunity of educating the public about this disease, but here lately, I find that my tolerance level is all but gone. My mother was recently diagnosed with Stage 4 adenosquamous carcinoma of the lung, and has elected not to undergo chemotherapy. So there are a lot of issues I am dealing with on that - but that is another subject for another time! I feel myself sinking into a hole of anticipatory grief. So when the last person I encountered on an elevator asked me when my "baby" was due, I quickly snapped back at her in an angry manner ... and without thinking... said "Why, when is YOUR baby due?" She was a very obese woman and I felt awful the minute I said it. I could feel the tears well up in my eyes as I exited the elevator and when I reached my desk at work, I could no longer control the sobbing. Most of the time I respond that I am not pregnant, but am living a productive, healthy life with PKD,etc. these uneducated, rude people often respond how sorry they are for assuming I am pregnant. What makes complete strangers think that it is perfectly acceptable to inquire into someone's personal life so rudely? Why do they feel they are entitled to know anything about my physical appearance - whether I am expecting a baby or not? My mother has tried to comfort me by saying that people just want to celebrate a new life with the woman who is expecting a baby because it brings them joy and hope. Why am I suddenly the ambassador of hope? How do you handle the stares, the inquiries, the assumptions? How do you not feel angry for having a disease that you did nothing to deserve, did nothing to get? How do you continue to find strength on the days that you find it hard to breathe, get out of bed, let alone try and live your life and take care of everyone around you? What is your secret? I would really like to know? I suppose the men reading this have probably been asked about their "beer guts" and so they may relate on that level... And, how big must my kidneys get before my nephorologist for will take one out? He said he has been monitoring them for a long time and they are so large that they press on other organs; so at what point do they peform a nephrectomy? What is the criteria? Has anyone here had a nephrectomy or a bi-lateral nephrectomy? If so, how are you doing today? Thanks for reading my rant... It does help to vent ... :) Sorry to anyone that I may have offended... "V" Posted on 07/01/09, 02:07 pm |
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Not a woman but i have pretty large kidneys as well, my problem is i am an avid bike rider, as in bicycle tour De France type. Almost all the riders that get the miles in (5000 last two years) are skin and bone, i am 235 LBS at 6'2. Needless to say i do not fit in and though i can stay with most others on the flats, when we get to a hill they pull away, a power to weight ratio thing, simply put, the more weight you are pulling up a hill the slower you go at the same power. Though my kidneys have failed they are VERY reluctant to take them out. They would rather just give me another in the belly (normal procedure). So i am stuck with an extra several pounds and it shows on me as well.
Sometimes bikers will comment on my descending muscle (the term they use for extra weight because it does make you faster going down hill just not enough to compensate) and i just let it slide because at 52 i have lived 10 years beyond the age my mother died of it and about 20 longer than her mother so i just ride on! Can't tell you how to deal with it at your end, but this life is hard enough with every thing else much less a disease to deal with, sometimes ignoring rude people is the best policy when you can do it. Also when i first learned that i had it for sure....I WAS MAD!!! then i was sad and though it took some time i got used to it because i realized that there was NOTHING i could do but learn how to live with it. Life is very special, make the most of it. 
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I agree atheophilus. Life is very special. Im taking it as it comes. For the last 6 months Ive been on a downer, which isnt like me at all. But Im back and feeling ready again to live on. Amazing what the mind can do.
I suppose like most woman out there I am paranoid about weight issues, and after having two children, it really hasnt helped matters. My problem is around the belly and the back (The very special 'muffin' top comes to mind). I too have been asked 'Is there a special event happening soon' Erm NO!! or Yes, 3 years ago - was what I wanted to say. I was more embarrased for the person who asked and found it quite funny. I have a tendancy to point out my large belly to everyone I meet on the off chance that thee 'comment' might be mistakingly made. I really have to stop doing that and learn to live with the fact that this is how its going to be. Im trying to discover clothes to diguise it (not really working) but the latest fashion over here look like maternity tops (a reminder to myself - avoid). This shape is quite new to me and Im sure you've been through this already GiggyLynn, but dont lose sleep over it now youve done really well so far. Getting angry will cause embarrasment to the person that made the comment (fine) but it is also punishing yourself with the guilt or stress of it all and this is the last thing you need. Its a hard call, telling them its your enlarged kidneys will probably cause more questions and embarassment and its really no-one elses business. I have a few of options for you; 1) just say June (make the pregnancy 12 months long - confuse them and walk away 2) whale-bone corset (joking) 3) Say - "Mind your own damn business" (again joking) 4) Say - "I'll crack the jokes" I would take a funny approach, that is me though and it works.
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Hi GiggyLynn,
A number of us have had this same conversation ongoing for a while now. I have the very same problem with complete strangers asking me when I'm due, and then the ensuing embarrassment when you tell them that you are not. The questions really started coming last year for me (though I'd had occasional ones since my 8 year old was a baby, before I knew anything about PKD). I didn't want to tell people the real reason for my shape, because I considered it my business and because my children didn't know and I didn't want them to hear chatter from others about it. Now my boys know (some) and I've recently decided it's easier just to say that I have enlarged kidneys. I avoid details, because they don't neeed to know and I don't want to discuss my personal health issues with someone I don't know . I do think these people are insensitive, and even nosey, to be blunt. Don't they know that that's not a question you should ask? I've learned that I need to brush it off and move on, though, for my own mental wellbeing. I accept that I'm now so big that people feel confident asking without finding they've made a mistake. How they wish they hadn't, though! I do have moments when I get angry about having to deal with this disease, but then I give myself a kick, think of all those who are worse off, and try to get on with things. Knowing there are others experiencing the same problems helps. Some members of this group are an inspiration. There are no promises made in this life, no guarantees. We have to take what we can from what we have. I'm learning not to grieve for what might have been or to be angry about what I can't do, but to value what I have. The grass probably isn't greener anywhere else anyway. It's an ongoing process, but I think it's becoming easier - some days! My husband's learning that sometimes I don't need anything from him (he feels at a loss), just a hug. That helps. Sorry about the lengthy reply. It's been my pet gripe, too, so I know how you feel.
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I could have written your post!
I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes on infertility treaments. Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due.?" I remember replying "Never! I will never be due because I can't have kids!" and bursting into tears. Well, my husband and I adopted a baby boy who is now 2 and a half and the love of my life so I don't feel as emotional about it as I used to. Like you, I usually try to educate and people feel terrible but sometimes I am just not in the mood. I think it is made worse because my belly button has popped out like a repgnant woman's. Otherwsie some might just assume I have a big stomach. But like you, my kidneys are 22 cm long and my doc said it is as if I am carrying twins. I will have them removed before transplant so that is at least something to look forward to...getting my waistline back. I told my husband to watch out because once I get my figure back I'm going to wear him out (hope that's not too naughty for these boards...but the big waistline kind of dampens things in that area as it is not great for my body image.)
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Hi! i have had people asked me the same questions again and again. Funnything is about an hour ago I went out with my sister who happens to be really pregnant. As we were ordering some take out, the lady asked both of us how far along we are.. well, see my sister and I started to make a tally and i think at this point i'm winning! What i'm trying to drive at is that some of these people mean well. Of couse different people may have different takes on this. But I think this should be the least of your problems right now. Battling this disease is no easy feat. You need the love and support of the people around you and it wouldn't help if we add this to our problems. We know why we have such big tummies, or why we look pregnant. It may take a stab at our self esteem but frankly, for me, what really matters are my friends and family. And those people know and understand my situation.
So the next time someone makes a comment, you can either just smile at them or simply say that "no, i'm not pregnant". They may be embarassed for assuming that but at the same time, you'll see that some of them just mean welll... I hope this helps.
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I to have had this same problem.A preacher at work said he didnt know I was expecting.. I just blew it off and said " Im not im just chunky today". He doesnt know me personally but it did upset me. I told my husband about it and he said that the shirt I was wearing made me look pregnant. Recently I started exercising and that seems to help my stomach area and my mood at the same time.
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I am a lucky one that I didn't have the belly. my tiny waist went by the wayside and I won't even try to go near it with a tape measure.
my brother had a huge belly and when I was told I was going into kidney failure I didn't understand because my belly was flat. incidentally, belly size and progression to kidney failure have little to do with each other. a simple, "I'm not pregnant, I have a kidney disease" should shut up most people and/or educate them.
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