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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Found out 2 months ago... =(

Hi everyone ... i've been diagnosed with PKD by accident two months ago...i had some stomache problems after traveling in 3rd world country... the problems went away but intruduced me to my biggest fear. my father was a very complicated case of PKD , died at 61 on he's 3rd transplant surgery..he was very high BP since 15 years old...  had nephrectomy(huge kidneys),open heart surgeries and what not... 


I'm 28 old  guy currently healthy,fitness trainer who eats healthy and exercise a lot , Kidneys normal size with what Ultransound said (12.8 & 13 CM )..i dont have many cycts in my left kidney but the right one has at least 20 .. i dont have hypertension my BP is avarage of 126\70  but the neph told me its better to bring it down to 110 .. 


I am scared as shit. sorry for the language...its the only thing on my mind...i'm still thinking if its wise to do MRA scan for brain...no history of this problem...my grandfather had ESRD at 58 and was on dialysis till 73... 


I know i'm not the same as my father but i'm so scared...I'm so scared that my kidneys will grow and make me feel pain and look bloated and eventually fail .


any comforting words ? =( 


its been a 2 months nightmare. 


thanks and sorry for the grim mood ... 

Replies

VerySad
VerySad

My son who is 29 had pain. They think he was passing a stone. They did an ultrasound and he was diagnosed with PKD. We didn't know of anyone in the family with this disease. My dad is 95 and his kidneys are failing but he does not have PKD. I had an ultrasound in 2012 and I had no cysts. My husband didn't feel well the other day, I took him in and they did an ultrasound. He found out at 66 that he has PKD and never knew it. He has a lot of cysts and they are enlarged; however, he has normal kidney function. We are waiting to see a kidney specialist. He is being very careful now that he knows to eat right and try to control his blood pressure. So not everyone has problems with this disease. Eat right and keep exercising. My husband has been walking for a lot of years. He can walk 10 miles a day. Think positive. You will be fine!
Chewitt
Chewitt

Hi PKDIL,

Welcome to the group. I'm sorry you have this diagnosis but there are a lot of positives in your story. As a fitness trainer you will be living a healthy lifestyle, which will maximise your chances of prolonging the life of your kidneys. By knowing early, you can avoid some of the pitfalls and keep an eye on your blood pressure. Proactively keeping BP low will again help to avoid damage to your kidneys. I managed to do this for years without medication by cutting out sodium form my diet and by taking exercise. Even now, with kidney function of 28%, I take the very lowest dose of medication and surprise the doctors with my good BP. My biggest problem is actually my polycystic liver, which is rare and almost always only seen in females because of a hormonal link. If you drink plenty of water, avoid caffeine and don't take NSAIDs, you will be doing the best you can for your kidney health. When your father was young, nothing was known about this disease so management of it was no doubt somewhat lacking. Things are different now so there's no reason to assume you will take the same path. Whether to have a brain scan is a personal choice. I was advised to but decided against it. It can be reassuring for some.

Keep healthy and positive. Enjoy life and try not to pre-live a load of negative events that will never even happen. The facts are what count. You are healthy at the moment. Concentrate on that. You're bound to feel unsettled after a diagnosis, but things will calm in your mind and you will carry on living your life.
Wrigs
Wrigs

Hi all

Also recently diagnosed with this little gem and expect was going through (still going though) similar emotions. I went to the doctors as back hurting as did Jiu Jitsu which I've now had to pack in as told contact sports are definitely out. Still doing most things at the gym okay but bench pressing causes issues at times, not ready to totally pack it in yet though. Think the hardest thing is the not knowing as to whether it will end up causing me major issues. My kidneys are up to around 19cm and starting to cause me issues with sleep etc as find it really painful in the mornings. Has been difficult and has altered my outlook on life somewhat although I know it really shouldn't.

The way ive looked at it is theres not much I can do about it so can't get too down with it. That said have started donating to the PKD charity as you never know what further medical advances may hold :)
PKDIL
PKDIL

Thank you everyone for answering !
VerySad dispite your user name you actually gave me hope =) i hope your son is ok and not in pain. and i hope your husband is ok too and will have many many years of good kidney function and general health.
chewit thank you too,with 28% of kidney function you feel ok ? manage to maintain active and normal lifestyle or feel disabled in anyway?

Wrings sorry for your diagnosis ... i'm really working on myself to come back to my normal happy self..hope you'll manage to do it too, how old are you ? with kidneys that size accept of sleeping do you feel any outer or inner change?
do you have high BP ? what can be done with your sleeping pain ?

I hope so much that something significant will be found soon that will prevent us of expereincing the full effects of this condition.
its hard not to think about whats going on inside on a daily baisis. but as been told - we live in another phase in medicine and things are already different. hope that the TOLVAPTAN thing will be effective and approved...
looking for some comforting and insparion i made contact with a 64 years old ex-olimpic medalist - runner from my country who went through transplant and today still runs a lot and in very great shape... hope!
cheers !
hope this conversation will continue (with positive vibes ) =)
Wrigs
Wrigs

I'm 37 now. BP was high but better now taking something to control it. Apparently that's not that big so happy days :) No don't feel any different generally speaking. Have had a few 'episodes' where I've had some extreame pain but these are a rarity rather than the norm. From what I can gather not much that can be done about the sleeping pain, I tend to shuffle around a bit and hook up pain killers when needed. I've also gone through the feeling lost bit, getting to grips with it now though. As others have said little point in spending all your time stressing over it, going to get out and do some more stuff.... starting with a 17mile obstacle run this weekend
Chewitt
Chewitt

Hi there,
Wrigs, I was 37 when my BP first went up, but I managed to stave off medication for many uears with diet changes and exercise. A 17 mile obstacle run sounds very impressive - quite a challenge! Long may your active life continue.

I walk my dog every day for 45 minutes to an hour and am glad that I can still do that. It does tire me, but I want to try to keep mobile. My function has dropped recently to about 23% and I am anaemic so do tire quite easily. My abdomen is huge and causes some difficulties on a daily basis, but I just try to keep going as best as I can. It's not always easy, but you just have to keep putting one foot in front of the other and making sure you look for the good things.

Best wishes to everyone.
nocotmack
nocotmack

Hey PKDIL

I feel you! I was just diagnosed. I'm 35, I lift 6 days a week, run for 30 min a day. I too am in great shape (finally getting abs!!). And now I'm so frustrated at the thought of the abdominal bloating and weight gain!! I have a polycystic liver also, which none of my family did.. so I'm super nervous :(

I'm trying to stay positive and continue eating healthy. My new motto is "one day at a time". Otherwise, this is all very overwhelming and sad.

I'm also praying for a cure or at least something that can slow or stop the growth of the cysts!
enigmaticloner
enigmaticloner

Hey there, I was diagnosed when I was 16. My blood pressure is usually alright but sometimes it's a bit higher. The symptom I seem to get the most is headaches, I've been getting them quite frequently since I was a child. It's one of the most frustrating things. I also get back pain and abdominal pain as well at times.
Chewitt
Chewitt

Enigmaticloner,

Just a thought. Your headaches could be caused by chronic dehydration. PKD involves a concentrating defect in the kidneys, so we struggle to hold on to fluids. This means we can dehydrate easily and need to keep drinong water to replace what we lose. It can be hard but it might help with the headaches.
enigmaticloner
enigmaticloner

I have heard that headaches can be caused by dehydration but I do drink a lot of water Chewitt so I don't believe that is the case all the time. I rarely drink anything besides water anymore. I do however wish I could find a way to stop these headaches, they're quite debilitating.
Chewitt
Chewitt

Is it migraine? I'm guessing you've done all the usual things like have your vision, sinuses etc checked? Have you tried a chiropractor or osteopath? My friend has been helped with her migraine a great deal by an osteopath. I hope you will find some relief from this.
enigmaticloner
enigmaticloner

Sometimes it is migraines but I get other headaches as well. Some of my headaches are caused by my neck/shoulder muscles from what I've heard but as far as the other ones I'm not sure. Yes I've had my vision checked and I've been to a chiropractor multiple times as well due to my back issues.
RHOADES826
RHOADES826

New to the board here, but I wanted you to know I was encouraged to read your post. I am a 30 yo female, pregnant with my 3rd child. Because of how the symptoms always presented early in my family, I assumed I didn't have PKD. They found the cysts while doing an ultrasound on my son. I was having such a hard time coping with the diagnosis! I am healthy! I've never had high blood pressure or any other symptoms, even during previous pregnancies. Anyway, it is a comfort to me to know there are others like me who are seeing a healthy lifestyle reveal a different outcome from past generations.
Chewitt
Chewitt

Hi there,
Welcome to the group. Great to hear your positive personal story. It is known now that there are many environmental and also genetic factors which affect how the PKD gene is expressed. The field of epigenetics is proving to be very interesting. This is why every individual is different and the course of PKD is difficult to predict, even within families. Those with a family history can be cheered that they don't have to be like relatives who have suffered badly: there are things that can modify the outcomes of the disease. Stay healthy!
LHanley
LHanley

This disease is highly variable within families. My older sister (68) has PERFECT kidney function but kidneys and liver are large. Mine are smaller and liver is normal but my function is 15%. I feel fine and although I tire more easily, I could still walk six miles in Rome in one day. My son is 27 and on BP meds. His cousin is 31 and has normal BP. Keep up your healthy life style, start now yo het most of your protein from plant based sources and drink lots of water.
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