Just Frances

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My PKD belly [?]

This entry was posted on Sunday, February 10th, 2013 by Frances Ryan.
Tags: running, pkd, ocd, health, ego, crazy, confession

Today I want to talk about my belly; my slightly-larger-than-it-should-be belly. And, in a way, I want to talk about my crazy brain and its way of justifying things that may (or may not) be right or wrong.

First, for those who don’t know, I have a genetic condition called polycystic kidney disease (PKD), which basically means that I have lots and lots of fluid-filled cysts all over my kidneys which will continue to grow and ‘take over’ my kidneys over the course of my lifetime. There is no cure and, eventually, my kidneys will fail. (Find out more from the PKD Foundation!)

As life with PKD goes on and those kidneys grow (mine are called Bob and Dave) they start to take up more and more space in your belly. In fact, the average ‘healthy’ kidney is the size of a fist and about a third of a pound, whilst a PKD kidney can reach the size of a football (and can weigh 20-30 pounds!). And what happens when the storage space hits capacity? Well, things start to spill over. Or, in the case of abdominal storage, things just start to stretch and expand!

Well, that’s all fine and dandy, but we also know that big bellies can be from mismanagement of the ‘calories in; calories out’* rule (i.e.: if you eat more than you burn, you’ll get fat!) or it can be bloating or ‘other things’ or even a bit of human making going on.

Now, since my husband died nearly four years ago, I’m certain it’s not human making** and I don’t believe it’s bloating or other things.

This leaves me with two potential causes for my big ol’ belly: 1) I’ve reversed my normal ‘calories in; calories out’ regimen or 2) it’s PKD belly taking hold.

And this is where the crazy comes in: You see, I know I’m not fat. I’m nowhere near fat. But when I look at my belly, I can see that it’s no longer flat and trim. It’s a bit, well, bigger than it should be. OK, fair enough.

I’ve not been running and training as hard as I should; I’ve actually had a pretty lazy and calorie-in-laden few months. So it would make sense that my belly would be larger. But we’re talking about a big, bloated-looking belly.

So what do I do? Do I tell myself it’s because I have a genetic disease and let it go, or do I tell myself it’s an issue of weight loss and exercise and start adding in extra sit-ups?

And if it’s one but I think it’s the other, am I making things worse?

And—more importantly—if it actually is PKD, will others believe me or will they just think I’m one of those people who blames their weight on ‘big bones’ whilst eating their third chocolate bar of the day?

Anyhow, I’m not trying to make up excuses for why my belly is no longer trim and slim. I’m just wondering out loud about the ‘real’ cause.

Though if I’m honest, I suppose it’s a combination of my advancing age, my lack of commitment to my running routine, and PKD. And I can only take control over one of those things, so I guess I should start setting my alarm clock for pre-work training runs before bikini season sets in!

(And if there are other PKD sufferers out there who want to ‘weigh in’ on the topic, please do!)

* I know there is more to weight and health levels than ‘calories in; calories out’. But to a certain extent, it’s a rational theory and I use it as part of my lifestyle choices.

** I am well-aware that one doesn’t need a husband to make another human being; I’m not that naive. It’s just that I’ve not re-entered the world of dating—let alone the world of the birds and the beessince Paul died.

(That’s a picture of my left kidney, Bob, from 2012. She is about 15 centimetres, which is about twice the average size, and her largest cyst, marked with the yellow crosses, measures 4.5 x 6 centimetres.)

Comments

I have PKD and I’m overweight.  I have been working out and eating better (not perfectly) and I have seen results in other parts of my body but in my belly .... nothing.
It is tempting for me to use it as an excuse (“I’ll never have a flat stomach thanks to my kidneys”) but I know better.
Good luck to you.

by Suzanne at 6:31pm (GMT) on February 11th, 2013

Thanks for your comment, Suzanne. I suppose that the hard thing for a lot of people is avoiding the temptation to blame the disease. Because, just like many other things, we mere humans like to find excuses.

Glad to hear that your diet and exercise routine is showing progress—even if not for your midsection (yet?). I hope you continue to see happy results.

by Just Frances at 6:58pm (GMT) on February 11th, 2013

I am sorry that your disease is progressing. Reality sucks. You know yourself. You are a beautiful person with an ugly disease. (you are in good company!) Accept the fact that you are getting older (that’s a good thing!) and the PKD is progressing. You can exercise and diet (term used loosely for just eating habits) til the cows come home and it will not stop PKD. Believe me, I have tried, and my cows are still out there somewhere. (Tho an angel did bring me a new kidney, just no cows.)

As I always tell my boys, “Do your best. That’s the best you can do!”

Love you!
Ant Elizabeth

by Ant Elizabeth at 5:57pm (GMT) on February 14th, 2013

I am lucky in that my kidneys are still fully functioning. However, I think we both know how soon that can change! It is weird though because over the past year I feel as if I can actually *feel* Bob (my left kidney) which is creepy. Plus, when I run I can feel her jostling around sometimes. But that might be because my spleen has been removed so she doesn’t have that cushioning.

Still, I have to accept that I will never have flat abs again. But at this point, I think I’m the only person who notices the ‘bulge’!

Love you, too!
xx

by Just Frances at 9:26pm (GMT) on February 14th, 2013

I have felt mine for years. I have several cysts the size of softballs, and I can feel them too. It is creepy. As for the bouncing, I am sure at some point you will be told not to run, or other bouncy stuff. (Maybe you have already been told?) Anyway, it is to keep the enlarged kidneys from boinging all over the abdomen, and popping those cysts. So…I use this advice for my ‘excuse’ to not be a runner. (I hate running anyway.) But, I am also not supposed to ride horses, but I plan on doing that this summer anyway. So I use the excuse only if it pleases me.

Good luck with it all. And as you know, it’s what’s inside that counts, not if you have a flat stomach. Just keep yourself as healthy as you can. That’s the best you can do.
Ant E

by ant elizabeth at 4:28am (GMT) on February 15th, 2013

I feel mine all the time.  I am still in stage 3, but I feel like someone has their fists right under my ribs ( also on my liver) and my sides.  I find that when I do exercise for several days that my kidneys seem to feel heavier and make it harder to do some things.  I dont know about anyone else, but it does get uncomfortable.

by tracy adams at 1:32am (GMT) on February 16th, 2013

Ant E: I haven’t been told not to run yet. In fact, most doctors agree that running is one of the best sports you can do when you have PKD. I think it’s mostly about the blood pressure control that it gives you. But I do imagine over time it will become harder and may be something I have to limit - which might mean casual jogs but no marathons or fast-paced 5Ks (not that I’m very fast anyhow).

Tracy: I haven’t noticed any difference after several days’ exercise, but since I am fairly active on a daily basis with my running I guess my body is used to it. I DO notice, however, that I feel tender after a weekend of junk food and wine. So I try to limit that a bit. (I *try* to limit it. I don’t always succeed!) I hope you’re not too uncomfortable with your PKD!

by Just Frances at 6:45pm (GMT) on February 17th, 2013

Hi Frances,

my dad has PKD and is at 18% function.For years we thought his belly was getting bigger due to too much good living, but then found out 2 years ago (aged 68!) that he has PKD.

I haven’t been checked for it so don’t know if I have it or not. I was googling this growing abdomen as a symptom as I too have become rather larger in the waist area recently, although like you have not been exercising or eating properly for the last couple of months. I am choosing not to get tested at the moment as it will affect my plans for emigration if I turn out to be positive. I must say I am used to a flat stomach of sorts and feel rather low and worried that this may be more than too many sweet treats. I am 33 at present and wondered when you started noticing the increasing inches and whether they were all over the abdomen or mainly top/bottom area? mine is definitely more top area.

Anyway good luck with it all.

by sam at 4:42am (GMT) on April 11th, 2013

Hi, Sam! Thanks for getting in touch.

I am sorry to hear that your dad has PKD and is losing kidney function. It’s a frustrating, inevitable part of the disease.

To answer your direct question: I really only noticed a change in my abdomen in the last year or two, so from age 37 on. And I’d say it’s more the middle; it’s very much my kidneys protruding. It’s weird. But my kidneys have been enlarged for a number of years—with several very large cysts. That said, most people wouldn’t think I have an enlarged abdomen; it’s just enlarged to me because I’m used to having a flat, firm tummy.

On the other end, three of my sisters have PKD and at least two of them have been dealing with enlarged abdomens for several years.

Blood pressure is generally one of the biggest things you need to look out for in the early stages of PKD. Most people would notice an elevated BP before an enlarged belly, so be sure to check yours if you can. And it’s a good idea to maintain it as much as possible as high BP will only make more trouble for a PKD patient. (Easier said than done, I know.)

Also, PKD won’t necessarily be a barrier to immigration. I was diagnosed at age 5 and successfully immigrated to the UK. (I’m American.) But, I am not an immigration professional so please don’t take my words as gospel.

Be sure to check out some of the PKD organisations like America’s PKD Foundation and the UK’s PKD Charity for more information. And you’re more than welcome to get in touch through the contact form here if you want to chat privately.

Good luck to you!

by Just Frances at 10:05am (GMT) on April 11th, 2013

I am 49 and have PKD. My kidneys are functioning at 100% but I am starting to have upper abdominal swelling. I look pregnant. I have read that Lycopodium had been used with great success in China to bring down the distension. They use 60 milligrams 3 times a day. Also Chinese osmotheapy has been used and has proven to be successful. I am in the process of trying to find an herbalist that performs this treatment in the United States. Any feedback?  Kelly in South Dakota.

by Kelly Avvampato at 1:50pm (GMT) on May 26th, 2013

Hi, Kelly. Thanks for getting in touch. I’ll start off by saying that I am not a medical professional, nor am I the know-all expert on PKD. So please know that the following is only a layperson’s opinion.

I’ve just looked up both of the treatments you’ve mentioned and for me, personally, I am sceptical of their true benefit. I am a believer in natural remedies, but I can’t see how these would actually address the issue of PKD.

PKD belly is caused, first and foremost, by the massive size of the kidneys which isn’t something that can be reduced. Of course, part of the distended belly could be other issues including constipation or side effects from other medications. (Or just poor diet and exercise in some cases.)

Personally, I would review any other medicines and lifestyle issues you have and then I’d talk with your nephrologist. Some medical (and natural/herbal) treatments can actually damage your kidneys, so a ‘kidney professional’ should be able to steer you in the right direction. And - who knows! - their recommendation may be one of those you mentioned above.

Good luck and I hope you continue to have great kidney function!!

by Just Frances at 7:47pm (GMT) on May 26th, 2013

I have PKD and I have had to restrict the type of exercise that I do due to PKD. In my 30’s I was training to run a half marathon and started to have pain due to the cysts on my kidneys. My doctor said that I could exercise as long as it did not cause significant pain (cysts breaking). I slowed down and started more walking. The last few years my wife and I have walked at least one half marathon (13.1 miles) a year together ( average pace of 13 minutes per mile). Sometimes I want to just run, but if I do more than 2 or 3 miles I can feel it in my kidneys, and a few times I have pushed it too far and had a week or more of pain as a result.

I do notice abdominal presure and that the kidneys affect my gut, but the exercise and watching my diet has helped.

I am now in my 50’s and at 17% functionality with kidneys that I can feel on both sides. My wife has just recently been approved to be a living donor to me and we will be doing this sometime in the next year. I understand that they will remove one of the PKD kidneys when they do the transplant. This should help with the presure, but I will still have one PKD kidney, so I will have to continue to limit the type of exercise.

From my experience, managing your blood pressure and maintainig a healthy diet (at least the majority of the time) is about all that you can do. From what I have seen, the first drug that may help PKD will be tolvaptan, but this may not be available for a couple of more years.

I wish you the best, and thanks for sharing your story.

by Paul at 11:58pm (GMT) on June 23rd, 2013

Hi, Paul! Thanks for your comments. I’m pleased to hear that your wife is a match and that you’ll be receiving a transplant soon. It’s interesting that they’ll be removing one of your kidneys at the same time. Of all of the people I know who’ve had PKD-related transplants, they’ve kept both of their kidneys in the beginning. (My uncle had both of his own kidneys removed a couple of years post-transplant.)

I am a distance runner (marathons and the lot!) and have been encouraged by my doctors to keep running as long as I can because it helps with blood pressure and overall health, which helps the PKD. I don’t generally have trouble when running, but I did have a cyst rupture during a 10K race not long ago. Ouch!

At this point, I am still drug-free and operating on full kidney function without high blood pressure—at 39 years old! My doctors find that amazing since my kidneys are so large and riddled with cysts, but it’s been put down to my diet and exercise regime. Sadly, I know that will all change one day. :(

Thanks again for sharing your story. I wish you and your wife all the best with your transplant!

by Just Frances at 8:48am (GMT) on June 24th, 2013

Hiya I’m getting tested for pkd I’m jist wondering what symptoms did you’s have to make you go the doctors first time ? My dad had kidney failure don’t know if he had pkd I’m waiting on ultra sound and blood test to come back bit scared x

by Donna at 8:52pm (GMT) on August 12th, 2013

Hi, Donna. I’m sorry to hear about your father’s kidney failure. Was he diagnosed with kidney disease before-hand, or was the failure an ‘out of the blue’ thing?

I was diagnosed when I was 5 years old, but didn’t have symptoms. For me, my grandmother was found to have PKD when she was having surgery for something else. That prompted my Mum and her siblings to get tested. When Mum tested positive, they tested me and my sisters.

Since my late-teens, I’ve had several kidney infections and a couple of cyst ruptures, but have so far had normal blood pressure without medications. (I’m a distance runner which helps.) My siblings with PKD have suffered from high blood pressure as well as kidney pain for several years though. Everyone is different.

The ultrasound will show if you have cysts growing on your kidneys - a good sign, but not always a telling sign as sometimes cysts grow without PKD. The blood work will help.

I completely understand being scared but please know that as much as PKD isn’t a picnic in the park, it’s something you can live with quite easily without too many life interferences. Medical treatments have come a long way since my grandma’s day. My Mum is 7 years post transplant (my uncle is 11 years post) and is doing great. And one of my sisters is on the transplant list right now. She’s still very active and manages to work most days all whilst raising two teenagers. So, life doesn’t end. I promise!!

Be sure to check out some of the PKD organisations like America’s PKD Foundation and the UK’s PKD Charity for more information. And you’re more than welcome to get in touch through the contact form here if you want to chat privately.

Good luck to you!

by Just Frances at 9:08pm (GMT) on August 12th, 2013

I will say I do understand. My family has a history my grandpa,dad,sisters,brother,nephews and a neice. Now I’m 39 and have been on dialysis for 2 yrs and on the transplant list for 3 yrs. but I stay as active as possible and eat the way I’m suppose to. I was actually at the dr office last week and he told me that he’s guessing that my kidneys weigh 30lbs between them which in turn makes me look 6-7month pregnant to the point that kids in my daughters class have asked her if I was. Now my family is very supportive and explains to people the disease PKD and we all try to explain and bring more awareness to what it is and how important donation is.  I wish u the best in all u do:)

by Stephanie at 10:30pm (GMT) on November 11th, 2013

Hi, Stephanie! Thank you for your comment. I’m sorry for my delayed reply; I’ve been travelling and neglecting my comments sections!

I imagine it must be frustrating to have a PKD belly large enough to look pregnant. I’m not to that point and am pleased for that! However, I know that a couple of my sisters struggle with larger abdomens than I do. They seem to pick their clothing based on what will mask that fact. I, however, am still able to wear form-fitting clothes most of the time. That’s because whilst I can see my big belly, no one else would think it’s big. (I think it’s partly because I can actually feel my kidneys that I feel that others can see them.

I hope that you are able to find a donor match soon. Two years on dialysis must be exhausting!

Good luck to you!!

by Just Frances at 2:04pm (GMT) on November 20th, 2013

Hello,
I am 35 with PKD stage 4. My kidney function is at 20. I have not been very active in the past but am vowing to increase my exercise.  One thing I’ve always done is situps. But I think I’m beginning to feel my kidneys when I do them.  Do you think situps are safe for PKD?

by Rona at 1:52pm (GMT) on January 11th, 2014

Hi, Rona. I’m sorry to hear that you are so far along with PKD - and at such a young age. I imagine that means you’ll be looking at transplant and/or dialysis options soon ... ?

I am not a medical professional so I can’t actually tell you if sit-ups are OK at your stage of PKD. What I know is that my own doctors have said they are OK for me - but I am at “normal” function levels.

Davita (a major Dialysis provider) suggests that sit-ups and other exercises are beneficial for people on dialysis but they stress the importance in talking to your doctor because everyone is different.

Good luck with everything!!

by Just Frances at 7:28pm (GMT) on January 11th, 2014

I just turned 50 and have PKD. I workout a lot and have always had a flat abdoman…. I have noticed this past year it bulging out a bit. Not sure if it is age or my pesky kidneys making things too full in there. My sister (two years older and has PKD too) insists that her Jaba-the-Hut belly is the fault of her her “massive” kidneys.  She also happens to be over weight and never exercises…. 
Soooo…. The jury is still out on our belly bulges. I choose to believe I can do something about it and am not willing to give in to being an old frump just yet! :-)

by Nicole at 3:39am (GMT) on January 24th, 2014

Hi, Nicole! Thanks for your comment.

It’s funny how PKD can affect siblings differently. For example, my belly is actually fairly flat(ish) as I do work out and run regularly. The ever-so-slight gooey-ness I develop over the winder months is really down to me and is almost always gone my April or May when I’m out running more. Though if you were to really look, you would see my kidneys poking out slightly. I wear form-fitting clothes and no one would ever look at me and think I have a big belly. (It’s just my own self-conscious fears that makes me think I do.)

On the other hand, two of my sisters do have enlarged abdomens that are (in part) down to the size of their kidneys and livers (it is common to have an enlarged liver with PKD, apparently). Both of them wear tops that mask their bellies because of it.

Same if you look at one of my aunts, she’s fine. But my uncle? Well he looks pregnant! He’s quite active and otherwise trim, but his kidneys have bulged out so much that you can’t not notice.

Much like you, I am not willing to give into the idea that it’s all my kidneys and I continue to work to keep as trim as possible. It’s just that I can’t keep things as trim as they were in my teens and 20s. I think that people who blame big bellies on PKD alone are doing themselves a disservice because they seem to abdicate responsibility. But, everyone has their own battles to fight!

Good for you on not giving in to the bulge! (Besides, exercise is a great way to stay as healthy as possible for as long as possible!)

by Just Frances at 11:16am (GMT) on January 24th, 2014

Hi Frances!

I was diagnosed with PKD when I was 14 and now I’m 15 , I am a basketball varsity at my school and this is my last year of playing. after that i will stop playing basketball and live a peaceful life. but from now on everything is going great :) PKD taught me to be disciplined to my healthy diet and lifestyle. sorry for my english because I’m asian . just sharing my story thanks! :)

by Jerome at 1:35pm (GMT) on July 3rd, 2014

Hi, Jerome. Thanks for getting it touch. I’m sorry to hear that you’ve been diagnosed with PKD and will have to give up basketball; it’s one of those cruelties of life. I hope you’re finding loads of great support from family and friends and that you’re looking into other, low-impact sports to participate in.

Good luck with your future and keep up the good discipline on the healthy diet and lifestyle - it will go a long way to keeping you and your kidneys healthy and happy!

by Just Frances at 12:56pm (GMT) on July 16th, 2014

In my early 40’s I had a flat washboard stomach, a 32” waist and weighted 192 pounds which is not bad as I am a 6’2” man. I could finish an Olympic distance triathlon in less than 3 hours when my GFR was about 42. I am now 53. I have had to drop my running due to chest pain. No heart problems but internal pressure causing acid reflux. My GFR is currently 17 but has gone as low as 12. While I can handle cycling I get too tired to go much more than 60 kms at a time.
My belly is what is really bugging me as my waist is now about 42 and my weight is about 260 pounds. I don’t eat much and try to be active and while I feel about 15- 20 pound overweight I look about 60 pounds overweight. I have been told each kidney is currently about 30 cms (1 foot long) and who knows how big my liver is. 
I chose to see myself as an athlete sidelined by illness rather than fat. I will continue to remain active as long as possible.

by Rob at 6:59pm (GMT) on August 19th, 2014

Hi, Rob! Thank you for sharing your story. I like the “sidelined by illness” attitude! Luckily, I am still fit and able to run - and in fact have a 1/2 and full marathon on the books for the next few weeks!

I am still (mostly) the same size I’ve been since high school and compared to most people I don’t have that big of a belly - but because I can feel my kidneys and liver (and I know that they’re very large!) I think I am more self conscious than anything else. In fact, I think most people would scoff if I complained about my big belly!

I know the days of tight-fitted dresses will soon be out of my scope, but hopefully the running will help a bit.

Good luck in your activity goals and remember - the longer you can keep active, the better!! (But I’m sure you know that!)

Frances

by Just Frances at 10:19am (GMT) on August 21st, 2014

Frances,
At 48 I’m finally starting to show although like most of us, I’m the one who notices more than others.
In a way it’s a relief since this is such a weird disease that most people can’t relate to it so to see it might help others. Of course vanity persists and I work on accepting my new body every day. I’m 136 lbs 5’7” and have always been slim and fit (120lbs) but now my belly sometimes sticks out and I struggle with not being the skinny girl anymore.
However, I can deal with that a lot easier than I can the discomfort of bloating after meals. My liver cysts make it very uncomfortable to eat and yet sometimes I confuse the discomfort for hunger and eat even more, making myself really miserable 1 hour later.
I wonder if anyone had found a solution to the after meal issues that we all face. Would love to hear options.

by Trish at 1:03am (GMT) on August 26th, 2014

Hi.I’m mary I’m the 3rd in my family to be told I have Pkd..my mom and two sisters are gone..my question is does these kidneys stop growing..I feel like I’m pregnant with twins.smothering if I don’t eat..really smothering if I do eat..it’s terrible…

by Mary Louise Singleterry at 11:54am (GMT) on August 26th, 2014

I am 48 and I have only one kidney with a large cyst on it. I have always been an athlete until 12 months ago where i found running was causing my breathing to become restricted. After alot of testing i was told i have 100% kidney functioning. My abdomen continues to swell on a daily basis and i have a permanent pain in my side and under my ribs…like everything is being pushed out. I have been told by doctors that its nothing to worry about. One even called me fat! I have been left to just deal with it. I keep thinking is it just me!? Am i going mad?? Reading your comments has made me feel like your writing about me! But now im left wondering where do i go from here. ?

by Sam at 2:19pm (GMT) on November 9th, 2014

I seem to have missed some replies, I’m so sorry! Let’s see if I can answer these questions:

Trish: I don’t really know much about post-meal bloating feelings, as I don’t get anything like that. I don’t think it’s normal to feel discomfort with the cysts because of eating. It could be that you’re eating too much (as you mention mistaken sensations make you eat more). It’s definitely worth asking your nephrologist or nutrutionalist about. There are some great nutritional tips at the PKD Connection’s Health Notes blog, too.

Mary Louise: I don’t know that the kidneys will just “stop growing”, though at some point something has got to give! The best advice I’d give (if it’s all the kidneys and not an actual weight-loss issue) is to find some flattering tops to masque your kidneys. My sisters have had great success with that!

Sam: I couldn’t tell from your comment if you have PKD, or just a “random” cyst that’s causing you trouble. Regardless, it sounds like you need a bit more guidance from your doctors - and you may need to find one who will listen to your concerns! My recommendation would be that you read up more on PKD, and that you make an appointment to talk about all of your concerns with your doctor. I’m happy to chat more if you have any questions. Good luck!

All my best,
Just Frances

by Just Frances at 3:02pm (GMT) on November 11th, 2014

Since we have a few runners I will share an experience. I began having chest pain when running when my kidney function got down to about 28 gfr. I had extensive tests including an angiogram with dye to rule out heart issues. All heart issues were ruled out and the cardiologist thinks its acid reflux. As a former triathlete with a resting pulse in my best shape of 38 bpm I have come to the conclusion that my enlarged organs moving when running were causing my acid reflux. I switched to cycling and due to anemia am now doing mainly swimming which is easier. Since I have extensive cysts in my kidneys as well as my liver this puts pressure on my other organs and can cause reflux which produces symptoms similar to chest pain. In all cased check out chest pain but explain the organ enlargement aspect of PKD to the specialist.

by Rob at 12:14am (GMT) on January 1st, 2015

Hi, Rob. Thanks for sharing your story. It’s interesting to hear the correlation between reflux and enlarged organs, as it’s not a problem I’ve ever had. Though as my kidneys and liver continue to grow, maybe it will become an issue.

As it stands now, I am very lucky to not have any “real” issues. Even my own feelings of PKD belly are laughed at by others because I’m the only one who can see it. (I am actually rather trim and fit looking, but I can feel my kidneys so I worry that others can see them!)

I have several half- and full-marathons planned for the new year (2015) so hope my kidneys don’t give me any grief!!

Thanks again for sharing your story. I’ll definitely read up a bit more on reflux and enlarged organs!

by Just Frances at 11:31am (GMT) on January 1st, 2015

Hi thanks for this, just started to feel the same too, did anyone have any success with reducing stomach size, I have just had 2 children and 5ft 10 but during pregnancy they measured my kidneys at 20/21cm and my right kidney has an 11cm cyst. You all mention golf ball sizes cysts but mine is massive, do you regularly get re scans? Are they worth getting? I have no other symptons than swollen belly/bloated feeling….hoping to start doing more cycling now the children are out if baby stage! Txs Hannah

by Hannah at 7:33am (GMT) on January 10th, 2015

Hi, Hannah; thanks for getting in touch.

As mentioned in other comments, by stomach being “big” is more about my over-active imagination that goes into hyper mode in the winter when I’m not running as much. When I run, my belly shrinks.

As for others I know, I haven’t heard of anyone decreasing their abdomen size without having their old kidneys removed (as was the case with one of my sisters). Sadly, if it’s your organs and not just fat formed from laziness or medical inability to exercise, it’s unlikely that you will see a decrease in size. ... Well, unless you’re bloated or otherwise retaining fluid. But the point is that your kidneys won’t be shrinking. (Sorry.)

As for scans, there are different opinions. Some doctors and patients like to have annual scans to note the progress and growth of both the kidneys and cysts; other only do scans to check out specific problems (such as a cyst causing more pain than normal).

Good luck with the cycling! It will certainly help with your overall health, which will be great for your kidneys!!

Frances

by Just Frances at 2:22pm (GMT) on January 19th, 2015

I am in my 40s and have been diagnosed with PKD for many years.  I’m fairly active and have a relatively good diet, and have tried now to go more with veggies and other things known to be friendly to kidneys.

My Father had PKD and both of his kidneys were removed when he got a transplant due to their large size, around 55 pounds!  I must have inherited his version of PKD as I look pregnant now and I’m finding it hard to find trousers that fit my waist and my trimmer legs.  I’d love to know how your sisters handle that aspect, and what others do to find ways to feel not as conspicuous about their kidney buldges?

It is great to know that there are others out there who can help with advice and support!

by Stacie at 5:54pm (GMT) on January 20th, 2015

Wow! 55 pounds worth of kidneys is a lot! I can’t recall for sure but I think one of my uncle’s were about 35 (total) when they were removed about 3 years post-transplant and my sister’s were about 20 (removed at the same time as transplant).

My sisters seem to cover up the PKD belly by wearing flowing, loose-fitting tops. One wears a lot of leggins, the other wears jeans but has never worn tight-fitting jeans so the trimness of the legs aren’t an issue.

I guess the glory is that leggings and over-sized tunics are in style right now - even for us gals in our 40s!

I’m sure that one of my elder sisters (one post-transplant; one nearing the top of the transplant list) would be happy to chat with you if you have more questions. If so, pop me a private message through the comments tab above and I’ll put you in touch.

All my best,
Frances

by Just Frances at 11:21pm (GMT) on January 20th, 2015

Hey! Im starting to b kinda freaked out…im 15 and got diagnosed with pkd when i was 10 (no one in my family had it b4) but bc idk anyone who has had it i dont actually rlly get wht it is. From my perspective i just go to the doctor every so often get a sonogram and then he says something like ‘exercise’ or ‘theyre enlarged’ or something. Can u tell me anything else abt it?
        Sage

by sage at 4:15am (GMT) on March 23rd, 2015

I want to start off by saying that read this type of stuff is extremely helpful for me. I have never met another PKD patient and I’m part of the 10% of ADPKD patients without a genetic link so no one in my family has it. I was first diagnosed at 14 and it can be very lonely sometimes when you don’t have anyone else the understands. I’ve had chronic pain since I was diagnosed but was able to maintain and active healthy lifestyle up until recently due to my kidneys size. My stomach always looks bloated and I’m often asked if I’m pregnant. I have to but maternity clothing because my stomach is so big but the rest of me is my normal small size. Things I use to enjoy like yoga and snowboarding have become so difficult because I can’t bend down to buckle in or cross my abdomin over my legs. I’m about to get married and I’m afraid I look like a pregnant bride. Don’t get me wrong, I’m extremely thankful for the life I get to live everyday but struggle with my physical changes. I want to do all the things I enjoy without physical pain and judgement.

by Holly at 1:35am (GMT) on April 7th, 2015

Hello, Sage. Thank you so much for reaching out. It must be frightening to be dealing with PKD when you don’t have other family members with first-hand knowledge. (Something I have always been lucky to have, if you can call it luck!)

I would start by saying now is the time to start educating yourself! Because PKD is a progressive disease, it will likely cause you more trouble as you age. But don’t let that stress you out: Most people don’t really have any noticeable symptoms until they are in their 40s or 50s—or even later!

The simple thing is this: Keep your blood pressure in check. Though that will also be the hard thing as you age! Hard, but not impossible!

A good, healthy lifestyle that includes healthy eating, lots of water, and a good exercise routine will help—and that’s something you should start working on early so that it’s just a part of your normal life.

I’d suggest a few things for right now… and recruit your family or close friends to help, too!

1) Get the facts!
Go to http://www.pkdcure.org and look at the great information they provide. Then read a few of the blogs they link to. If there’s a support group near you, join up! (And take a family member, too.)
2) Make a list for your doctor!
It’s not enough to just rock up to an appointment unprepared. Instead, take a list of any questions and concerns you have (keeping in mind they’ll have other patients to see). Ask them what resources they can recommend. Ask about dietary limits and suggestions - even ask to see a renal nutritionist if needed.
3) Listen to your doctor!
Not just about what to do and not to do, but about what they say your kidneys are doing. And TAKE NOTES! Keep a journal of your PKD questions (and answers) as well as your doctors comments. This will help you to see how things are progressing over time.
4) Join a support group!
The PKD Foundation (http://www.pkdcure.org) will have a list of local chapters you can contact. And take a friend or family member with you because they’ll be part of your support network, too!

You’re out there looking for information, which is a great thing to do. Just don’t fall for the “miracle cures” you find online. There is NO CURE for PKD right now, but when/if there is, your doctor (not some random person on an Internet forum) will tell you about it.

Good luck ... and feel free to get in touch again!

by Just Frances at 10:52am (GMT) on April 7th, 2015

Hi, Holly. Thank you so much for your comment. Much of what I’ve said to Sage above may help with some of the issues you’ll tackle as the only person in your family to have PKD, so I won’t repeat myself there.

I will say, however, that I am pleased to hear your positive attitude!

My own “PKD belly” isn’t that big at all, and I am the only person who notices. And I’m very lucky to not have pain. But my sisters have the “pregnant belly” look and have struggled with it. For them, they wear flowy tops to help hide things. Sadly, my eldest sister is also in chronic pain from her kidneys… and there’s little they can do about it until she has a transplant, at which time they’ll likely remove the PKD kidneys.

The one thing that really struck me was your comment about it being lonely when no one understands. To that, I would really suggest you see if there is a local PKD support chapter for your to join (http://www.pkdcure.org). Alternatively, I know that my eldest sister (the one with the high levels of pain) would be more than happy to chat with you. If you’re interested in that, pop me a private message from the contact page linked above and I’ll put the two of you in touch.

And congratulations on the pending nuptials!!

Just Frances

by Just Frances at 11:04am (GMT) on April 7th, 2015

Hi Frances.  I just hung up the phone with my Nephrologist and Googled, “PKD extended belly” and found your blog.  It was assuring / comforting to read your history and concerns, as well as those of the other PKD patients who have contributed to your forum, here. 

I am 50 and a couple of weeks ago visited my Nephrologist, he was concerned about the speed of which my kidneys are growing.  He ordered a CT scan.  He wanted to let me know that due to the size of my kidneys, other organs are pushed around and one of the cysts, which is softball size, is pushing up against my stomach.  My kidneys are shoe-box sized.  I am 6’7” and looking at my vacation pictures from last year and the year before, I was slim at a nice 34” waist.  I thought my extended stomach was diet, so have lost 14 pounds.  My waist is smaller, yes, but my gut is even larger.  It looks like I am pregnant, almost.  I know there is a procedure in the US which can be done, to de-bulk, or aspirate the cysts, which can reduce the girth of a stomach and size of the kidneys, but since there are so many cysts on my kidneys, they will not do this. 

I am in stage 3, and as many others have said, have some flank pain, acid reflux from the pressure and severe back pain from the kidneys pressing on my spine.  Because I have function left, they don’t want to remove my kidneys and have me be on dialysis, until I am end-stage and ready to go on the transplant list.  I cannot run or bounce around, as many have said.  The only exercise which is good for me is swimming and walking, for as long as I can - but the pain sets in and i have to sit.  Like right now, it comes on strong!

Just wanted to join the chorus of others who are struggling with looking in the mirror and not seeing the slimmer self they once were, but dealing with looking like they’re “fat” or an out-of-control food consumer….of which, most of us, if not all, are definitely not.  I think it plays tricks on my psyche more than anything.  There is the uncomfortable factor, yes…but damn, my waist is getting smaller and my gut getting large.  Short of wearing a T-shirt that announce, “I’m not fat - just have PKD”...really, there is nothing we can do but love ourselves, accept ourselves and if anyone is worth their merit in love or friendship, they would understand and not pass judgement. 

To all of you who are suffering, or soon to be on a transplant list - good thoughts. 

Gary

by Gary at 6:27pm (GMT) on April 22nd, 2015

Hi, Gary. Thank you so much for your comment. I completely understand what you mean by the PKD belly playing games with your psyche! I really worry about my size quite a bit, when the reality is that no one else would think I was anything other than trim. But because I can feel my kidneys, I am convinced that they are more noticeable than they are!!

As for aspirations and de-bulking, I’ve heard others talking about it and wishing they could do it, but it seems that there are more risks than it’s worth. Sadly, the best options for health aren’t always the best for vanity!

I hope that things go well for you and that when/if the time for dialysis or transplant comes you’re able to have the shoe-box kidneys removed.

Good luck to you!!
Just Frances

by Just Frances at 7:15pm (GMT) on April 22nd, 2015

Hi I’ve been diagnosed with pkd over 2p years .I’m now 43. I’ve started getting alot of blaging and pain in my left side which presses really heavy into my back. I have only one kidney which I full of cysts. Gfr 37.x

by lisa at 5:11pm (GMT) on September 22nd, 2015

Thank you, your blog it has been very encouraging. I have PKD/PLD and don’t know anyone who has it. I’m trying to be okay with the fact I have huge cyst growing in me and that I will never again have a small waist, this has been difficult. When I was first diagnosed two years ago I felt sorry for my self and gained weight. This last year I decided to start running and have lost weight in other areas a little bit in my belly. I have run a couple of 5ks and will run a 10k in Jan. For me running helps me feel like I’m doing something, fighting this disease. Your blog gives me hope, I will run until I can’t. Thank you!

by Monica at 7:19am (GMT) on November 26th, 2015

Hi, Lisa. I can’t imagine the additional challenge of dealing with PKD with just one kidney. Hopefully it doesn’t cause too many complications.

Monica - I’m glad to hear you’ve found my posts encouraging ... I aim to please! And I hope that you find running to be a healthy and safe activity for you. I have shared a post about running with PKD in the past, if you’re interested. The key, of course, is to make sure you can run safely.

Please feel free to get in touch if you want to talk with someone a bit more - or check out the various Facebook groups, too.

All my best,
Frances

by Just Frances at 7:20pm (GMT) on November 26th, 2015

I’m a 59 year old guy who looks like I’m pregnant with twins, including the outie.  I have been struggling with an increasing belly for several years. My GP keeps telling me to lose weight, and I try, but nothing seems to help.  I know how you feel about the back and forth between the Devil and Angel on my shoulders.  One says, “You are just fat, stop making excuses!” The other says, “It’s PKD belly stupid!” 

It kills me when my GP starts talking about, “apple shape” heart risk.  LOL.  Like I will ever lose this belly!  My hips are 38” and my waist was 48” last I checked, and steadily getting bigger. 

Whenever they do an ultrasound I always ask, “How large are my kidneys?”  They will tell me about this or that cyst size, but never the total kidney size.  If I have two 30 Lb footballs in my gut, then I’m not overweight.  But how can I ever know. 

The worst thing for me is not being able to tie my shoes or cut my toenails anymore.  When I bend over my lungs get squeezed and I can’t breathe.

by Curtis Martin at 9:57pm (GMT) on February 10th, 2016

Hi, Curtis. Thank you for your comment. I see you struggle with the same problem as me: Can’t decide if I should blame the weight on my kidneys or that extra pizza! :)

It’s odd that the doctor won’t tell you the size of your kidneys. It’s not like it’s a difficult thing to do - especially if they’re telling you the size of the cysts. Strange, indeed.

Hopefully you’re able to find ways to exercise and keep your blood pressure down… and you never know, some of that apple might just go away. (We hope!)

Oh, and I’ll have to have a wee look around your website ... it looks interesting! :)

Take care!

by Just Frances at 8:55pm (GMT) on February 14th, 2016

I think am finally coming to grasp with the belly getting bigger. I just went on an Amazon “big shirt” buying spree.  I’ve always been a small person but my belly is just so full and holding it in no longer works.  I am lucky that they still function. I’m 49 and have made it further than my mom did and further than my younger brother who recently received a transplant after 6 years of dialysis.  I think it is what it is and my bikini days are over.  ;-)

by Chris Griffith at 7:42pm (GMT) on July 3rd, 2016

Of dear… an online clothes shopping spree is serious stuff! :)

I am a small and generally fit person, and I can notice that my kidneys are larger… and therefore my belly is larger. However, my friends tell me that it’s all in my head. Which either means (1) they’re all being nice; (2) the “average” has changed to the point where my “big” belly is still small; or (3) it really is in my head. (Or maybe it’s a little bit of all of it?)

The point is, I wonder if maybe you could still r0ck a bikini and no one would every think your belly was too big. Of course, I’ve been told that size doesn’t matter ... if you like wearing your bikini, wear it ... and let those kidneys enjoy the sun’s rays! :)

by Just Frances at 3:41pm (GMT) on July 5th, 2016

I’ll look like your average American.  So much for this vegan diet.  Pass the French fries! ;-)

by Chris Griffith at 9:48pm (GMT) on July 5th, 2016

Hi Frances,

  Just wanna share my (PKD) experience (Family history - genetics - mother’s side), I had diagnose in 2012, that was my last check up with my Nephro, but after that I didn’t came back. So when the years goes by, I enjoyed my life eating bunch unhealthy foods like, meat and salty foods , etc.. Suddenly this year I had experience several hyper tensions, it goes down and goes up but in an intermittent way. So I decided to drop by to a Regular Doctor (Not a Nephro). She advised me to go back to have it checked up with a Nephro specialist. I haven’t decided yet as to when I will have it check again, since I am really scared of what will be the result. So I tried to check online for any advise or suggestions that I can take to make me feel better that this type of disease still has a small percentage of being treated with something or in someway. But the I think the only option is proper diet and more on healthy life style. We’ll if its regarding healthy life style, I’ve been a smoke free person since 2014, alcohol free since 2015. But still I’m worried of my self being at the age of 28 and getting married next year of 2017. I still want to have children and grand-grand children in the future. :( I am not losing hope and always keep praying, by the grace and mercy of the Lord he will heal me. I know that. Thank you for this page and I was able to share my insights and experience with PKD. Feel free to shoot me a comments and suggestions It’ll be a great help. Thank you, Godspeed and God bless!

by Mark at 9:30pm (GMT) on July 21st, 2016

Hi. I was googling PKD and weight loss and found your post. Just wanted to say that I love it! I’m 33 and was just diagnosed with PKD. On my 33rd bday actually. I’m adopted, and was unaware I was even at risk for it. Now I wish I had known earlier! I’ve got 3 children, my oldest is 13. My other two are ages 2 1/2 years and 3 months, almost 4. I had high blood pressure with both my youngest children, and was told I had preeclampsia. I was 140 and in great shape before my 2nd pregnancy, but during it my dr determined I was high risk due to a cervical issue, and advised me not to work out beyond a slow walk. I complied, and wound up shooting up to 207. I wasn’t worried though, because a lot of that was water weight. My dr insisted it was pre-eclampsia and told me not to worry about it, and didn’t treat my high blood pressure behind monitoring it. Once I gave birth, I focused on weight loss and working out, but couldn’t get under 160. My dr told me not to worry, that I was retaining weight because I was breast feeding. The week I stopped breastfeeding I also got pregnant (we had been trying, but the breastfeeding was interfering). For my 3rd pregnancy, I had a new dr and she advised me to continue working out to the extent I was comfortable, and I worked out until the day before I was induced, 1 week past due. I developed high blood pressure, but I never developed the protein in the urine that’s the sign my dr was looking for, so again they didn’t treat the BP. I complained to my dr all through my last trimester about stomach pains, and that I thought it was my kidneys, but she disagreed and thought it was my gall bladder and told me they couldn’t treat it while I was pregnant unless it became life threatening. I was induced and delivered my son in April, but my BP never went back down. In June I was at the gym when I had a sudden headache, and the gym workers wound up calling an ambulance on the advice of a nurse who was also working out. They found I had a brain aneurysm rupture, and I had surgery the next day. 4 days later I had a second aneurysm start bleeding and had a second stint put in. The second aneurysm hadn’t shown up on my CT scan at admittance. They put me on BP medicine and sent me home a week later. Two weeks after that I was in horrible pain, so went to the ER. That was my bday. The dr did another ct scan of my mid section and told me I have PKD. Two days after that I saw a kidney specialist for the first time. My kidney dr informed me that the blood thinners I have to be on for my aneurysm are causing my cysts to fill with blood, which is what’s causing the pain. My kidneys weigh between 7-10 pounds each already. They also checked out my heart and I already have the mitral valve prolapse. Good times. All of that I’m ok with, sort of. I’ve accepted it anyways. My biological brother who is a year older than me and was adopted by the same family as I was, got tested and he’s fine thankfully. Luck of the draw.

Said all that to say this. I’m glad I read your article. Despite working out and eating mostly right with my 3rd pregnancy, I still shot up to 206 again. I’m now almost 4 months post partum and stuck at 180. I’ve even done the 21 day fix and didn’t lose a pound. I’m not breastfeeding this time due to all the meds from the brain aneurysm, so I don’t have that as an excuse. I still look 7/8 months pregnant also. I’ve been miserable thinking that my stomach will never go away, but your article gives me hope that it’s maybe not so impossible. My husband tells me all the time not to worry about it, and that it’s because of my kidneys, etc, but I hate using excuses. I’m in awful shape right now because my neuro surgeon advised me not to work out beyond light walking for at least 6 weeks, which I’m almost at the end of, and I had the aneurysm right at the end of my 6 weeks post partum time, so it’s been 3 months since I did anything beyond walking. It’s frustrating that even eating fish and salads with no dressing and drinking nothing but water, and eating a very healthy breakfast, (for examples, sometimes I have chicken and broccoli or something instead of salad) I still haven’t lost weight. But I’m going to stick to it and keep trying and not give up hope that someday it’ll make a difference!

So again, thank you for the inspiration! I’m trying to avoid using the adpkd and aneurysm as excuses, but it’s really easy to when everyone around me uses them as excuses to reassure me.

by Shasta at 9:10pm (GMT) on July 24th, 2016

Hi, Mark:

Thank you for your comment. (Sorry for my delayed reply; I broke my ankle and have fallen a bit behind on everything - including my blog!)

The thing with PKD is it is a progressive disease. Whilst diet and exercise can be very helpful in managing your blood pressure (which is a good thing for someone with kidney disease) that alone will not prevent PKD from getting the better of you. Delaying a visit to your nephrologist will only delay any potential treatments that you may be able to access for your long-term health… so you should definitely make an appointment.

It’s worth noting that there are some treatment trials that you may be eligible for, too. Your nephrologist will have more information about these and will be able to refer you if you are a good candidate.

In the meantime, keep up with the healthy living options. They can’t do you any harm!

God bless,
Just Frances

by Just Frances at 3:58pm (GMT) on August 8th, 2016

Hi, Shasta. Thank you so much for sharing your story. It really sounds like you’ve had a hard time of it, but it also sounds like you’ve got a positive attitude!

I think it’s great that you’re continuing with the healthy choices. I know it can be challenging, especially when the depressing feelings of chronic illness make us want to give up. Just keep going, and you’ll be OK.

I have a known family history of PKD so have lots of people to talk to about the various ups-and-downs. I’m sure things would be different if I was the only person I knew with the disease. But don’t let your situation make you feel isolated - there are several great support groups on Facebook and Twitter that you can join. There, you’ll find lots of people with similar experiences to you - hopefully one of the groups can help you. (I don’t blog about PKD often, so this blog isn’t the best for support networks… just my own experiences).

I hope your positive attitude continues - and that you have all the energy you need for raising your little family!!

Cheers,
Frances

by Just Frances at 4:08pm (GMT) on August 8th, 2016

I am so happy you wrote about your situation. Everyday I live a healthy lifestyle but as the day goes by my belly swells. It makes me feel so self conscious. I’m a teacher and kids are very honest and because I have no body fact on my arms or legs I am many times asked if I’m pregnant. It kills me every time, but then I smile and tell them I have PKD.

by Nicole at 1:14am (GMT) on August 10th, 2016

Hi, Nicole. Thanks for your comment. You are so right about the honesty of children!! Though I am nowhere near the point that people would think to ask if I’m pregnant, I know that it won’t be long until I’m there - especially as a recent broken ankle means no more marathon running this year, and no running at all for 12 weeks. I fear it won’t be a PKD belly I’m sporting, but rather a lazy, couch potato belly!!

And I hope your students are learning all sorts of life-lessons when they hear you have a genetic kidney disease, too! :)

by Just Frances at 1:52pm (GMT) on August 10th, 2016

wow these stories are so inspirational. I’m 44 with PKD/PLD with large kidneys and liver stage 4. I am finding things difficult recently with tiredness feeling sick headaches and pain and breathless. But I think the hardest thing is people making judgement that I am pregnant on a weekly basis and how to handle this! I am at the point when I just say that I,m not and then it’s awkward. I told a few people about my pkd and they give you the pity look. I have to choose clothes to cover up and not what I would choose for myself. All the strong advice from here has been very helpful thank you for not making me feel I’m losing my mind and that we can do this!

by Tracy at 8:08am (GMT) on October 25th, 2016

Hi, Tracy; thanks for joining in the conversation! I am lucky that the slightly larger size of my belly is still quite small in comparison to the average woman my age - so most people still think I’m relatively thin/slender. I can’t imagine how challenging it would be to have people constantly thinking I’m pregnant - especially as I am a widow who likes her martinis. I’d have a lot of people wondering who the father was, whilst thinking I’m a horrible person for drinking during pregnancy!

I don’t know what kind of personality you have, but maybe you could print up some small business-card sized information cards that have some quick facts about PKD along with a link and/or QR for more information? Then when people ask if you’re pregnant, you can say “no, I’m sick” and hand them a card. Snappy response and awareness-raising all in one! (Again, you have to have a certain kind of personality to pull off something like that.)

The clothes is a hard one, I know. Especially if you’re not able to wear the kind of stuff you really like. But hopefully you’ll find a great new style to call your own before too long!

Anyhow… you’re not losing your mind! Or if you are, we all are!

All my best to you!
Frances

by Just Frances at 2:34pm (GMT) on October 26th, 2016

Here’s an update on my belly. When I responded a year ago my belly was 48”.  I retired in June (5 months ago). The stress was just too much. I also have celiac disease and am on a gluten free diet. The pressure from work was aggravating my blood pressure issues, food cravings, overeating and digestive problems. In the last year my belly grew 4” to 52”. After retirement my stress related eating and cravings went down and I lost 25 lbs almost effortlessly. After dropping all that weight my belly lost only 2”.  Even with the weight loss I have a net gain of 2”.  That tells me that the kidneys are more to blame for the belly. I can tie my shoes more easily, but I also invested in a long handled shoe horn. I leave my shoes tied and use the shoehorn standing up.
Regarding bloat: with my celiac, bloat comes on strong with any accidental gluten ingestion. My outie gets very painful and I have to wear a belt to hold it in. I recommend eliminating wheat & gluten for anyone with bloating issues.
I’m 60 now and have no idea what my kidney function is. My HMO hasn’t referred me to a nephrologist.

by Curtis at 4:19pm (GMT) on October 26th, 2016

Hi, Curtis. Thanks so much for the update! (And happy retirement!) I’m glad to hear you’ve had some weight-loss success, but it must be frustrating to not see that in belly loss! Hopefully, the change in diet will help with any bloating issues though.

I suppose that if you’re not being referred to a nephrologist it might mean that your blood and urine work is all still within normal ranges. So that’s a good thing! I’m assuming your blood pressure is under control, too. (I hope!)

Here’s hoping that retirement brings you further weight loss… and that maybe your belly shrinks a bit, too!

All my best,
Frances

by Just Frances at 10:54am (GMT) on October 28th, 2016

I have been dealing with a lot of GI issues from celiac, so I haven’t paid much attention to the PKD. I went online to find my GFR test results. My latest test in June was 44! I was over 60 three years ago. What a shock to find that I’m in stage 3 now. I emailed my PCP for a referral to a nephrologist right away.  Weird that it never came up in my appointments because my main complaint was exhaustion and night sweats. I was referred to cardiology for a stress test, but not a nephrologist.
I’m doing research online to see what dietary changes I can make. I see a lot for CKD but nothing for PKD.

by Curtis Martin at 3:21pm (GMT) on October 28th, 2016

Wow! The fact that they haven’t referred you despite the decrease in function is odd. It might be worth a call to your doctor to see if they can expedite a referral.

As for dietary changes, CKD and PKD will be fairly similar: watch your sodium, proteins, etc. Of course, the levels of change needed might also depend on just how low your kidney function is - and it would be different if you were on dialysis, too.

I would suggest looking at PKD Connection for some great information (http://pkdconnection.org/) including recipes and diet tips.

Good luck!!
Frances

by Just Frances at 2:45pm (GMT) on October 31st, 2016

I skimmed through your comments here, and I may have missed it:  What kind of diet do you follow?  I have ADPKD, and I have followed a strict vegan diet for the past 14 years. I’m hopeful that it will help over the long run, but who knows?  Would you share what your diet is?  I’m 43, by the way, and as of my last visit to the doctor a year ago, doing fine so far. I have my next appointment scheduled for January 25, 2017, and so am anxious to see how my lab values are. I know that I’m getting into the age range where things often start to decline. Thanks for sharing!  Elizabeth

by Elizabeth Caton at 4:19pm (GMT) on January 6th, 2017

Hi, Elizabeth. Thank you for reaching out! I am not really on a specific “kidney diet” but rather I just watch my overall diet. I try to limit my sodium intake most days and limit my caffeine to one cup of coffee a day (2 on a weekend at times). This is done in part because sodium and caffeine can affect blood pressure, which can cause extra work for the kidneys. (I have BP well within the normal range without medication.) I also try to monitor my meat intake so that I’m not eating too much animal protein. And, of course, I eat lots of fresh fruits and veggies. Oh, and I drink loads of mint tea (caffeine free!) so that I stay hydrated.

My functions are all quite normal and healthy so my doctors are not worried about my diet - especially as I am an active runner. But I know that as people begin to lose kidney function, dietary changes are more important.

If you are worried about your diet though, I would ask if you can make an appointment with a renal dietitian. Your doctors should know of someone in your area who could help you out!

Good luck at your appointment later this month. Hopefully all of your labs come back strong!
Frances

by Just Frances at 10:22am (GMT) on January 7th, 2017

My adult son had a malignant hypertensive event about a year ago and the doctors did various tests, etc.  He was referred for suspected PKD.  The Neprologist said he was in stage 2 kidney disease however now at this point wants my son to do another US to check the kidneys.  My son’s father left us and I can not find out if his father had PKD, I don’t.  My son is overweight however he has developed a very significant belly that embarrases.  Even though he is an adult I am finding it hard not to try to get him to change, come out of denial etc.  I don’t know what the US would show of course.  What complicates this is that I have been very ill (cancer, heart attack) and my son, my only family is a caretaker at times and I think the stress is making it worse for him.  How does one “let go” so to speak when he is in such a critical condition or potential condition.  I have tried to find out if his father has PKD but have not been able to find this.  My son as I said is an adult.  He is a steady worker, supports himself, unmarried however a fine person and I would like to know if there is anything you would suggest I do or not do to help him seek out the confirmation or ruling out of PKD.  Thank you for reading this.  I appreciate these posts.  I am a retired nurse and it is very difficult for me not to be thinking of the outcome.

by Gail at 8:11am (GMT) on November 11th, 2017

Dear Gail,

Thank you so much for your message. I am very sorry to hear that your son has been diagnosed with kidney disease. Has the PKD been officially diagnosed, or is that still in progress?

Whilst PKD is most often inherited, it can also be caused by a genetic mutation. (That’s how it came to exist in my family: My maternal grandmother had a mutation which then passed it on to some of her children.) So if you are unable to confirm PKD with your son’s father, don’t let it worry you.

Confirming PKD can be a good thing, especially if you have access to good medical insurance. It means that you can be monitored for the progression of the disease and you can also be offered various treatments to help with certain aspects of the disease—such as blood pressure and cholesterol medication if needed. There are some studies right now that are using these medications to help in the overall treatment of the disease.

Another bonus to diagnosis is that the FDA is getting closer to approving a new drug called tolvaptan. It is meant to slow the progression of the disease and has been approved in other countries for a while now. I am an American but live in Scotland, so I am lucky to be on it here. (I hope that it’s approved in America soon so that my nieces and nephews can start taking it!)

PKD can cause troubles, but it is also a disease that is survivable. In the early stages, one of the best things you can do for PKD is to really manage your blood pressure, so if your son can do that, he’ll be off to a good start. Even if he is not ready to officially confirm the disease, if he can start to manage his blood pressure and weight as best as possible now, it will help him in the long run.

Ultimately, however, it’s not a death sentence. My Mum is 70+ (had a transplant about 12 years ago) and is surviving just fine. I am 43 and don’t have any issues. I’m still able to travel the world and run marathons—whilst eating the occasional bacon cheeseburger!

Please do get in touch if you wish to speak more. You can contact me privately if you’d like or you can comment on this or any other PKD posts. There are also a number of great support groups on Facebook if you’re looking for a community to help you and your son through all of this.

All my best to you and your son,
Frances

by Just Frances at 10:47am (GMT) on November 11th, 2017

Heyy, so I was Diagnosed about 2 months ago. I’m in the navy but unfortunately they aren’t giving me the best care. I went To a kidney specialist once since I’ve been diagnosed and he did not tell me much about my disease. I told Him my belly was swollen and he told me it had nothing to do with my disease but couldn’t tell me what it was. He actually didn’t even look at me. And I have like a lump on my belly, he also didn’t bother to look at it. Even after he saw my concern and my husbands concern. My husband and I haven’t been able to be sexually active for about a month and a half because it hurts and I think I’m feeling it in my kidneys. I am only 24, and they haven’t told me specifically how I am and how far the disease is with ME. He gave me a lot of google facts. But none about me specifically.

by Vanessa at 3:26am (GMT) on November 21st, 2017

Hi, Vanessa. I am sorry to hear that you’ve been diagnosed with PKD - and that you’ve not found a good doctor. It can be really hard when you don’t have a good relationship with your medical team.

The thing with the swollen abdomen is that it might be the disease… or it might not. For me, it is mainly because my kidneys and liver are all very large (more than double the normal size). But for others, it can be water retention that stems from dietary issues. And for others, it’s just extra weight from the mismanagement of calories in/out. Though I think that, for most people, it is a combination of all three to some extent. (The three things impact each other.)

Have they done an ultrasound or MRI to measure your kidneys and cysts? And how is your blood pressure? One of the key things is to manage your BP as best as possible.

It might be a good idea to join a group on Facebook (there are several) where you can talk with others who have PKD. Also, when you meet with your kidney doctor next, you might want to be prepared with a list of questions - including what your current GFR (kidney function) is.

Of course, if you are in physical pain, be sure to keep pushing your doctor to investigate it. Whilst pain has never kept me from being active, I know that it can be quite debilitating for some people. But that doesn’t mean you should have to accept it as normal - there are things that can be done to help ease your pain and discomfort.

I hope that you start to get some answers soon!

All my best,
Frances

by Just Frances at 11:21am (GMT) on November 22nd, 2017

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