Kidney Conditions Forum - Polycystic Kidney Disease

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Q: Polycystic Kidney Disease

asked by: peace4u on January 9th, 2008

New User

I have known that I have PKD for 32 years. Now I am in kidney failure. I am 50yr white male and until recently in decent health otherwise. My father and paternal grandfather both had PKD and had kidney failure. Still I don't know much about it because my father was not the type to talk about his situation and he did not know until he was already in complete failure. I have a number of maladies that have shown up in the last couple of years. My Dr says they are not related but I am having my doubts because they started when my function got down in the low 20s%. I spontaneously started what I believe to be irritable bowel syndrome (very mild but getting worse). Also about the same time I developed Plantar Fascitis (heel spur) that doesn't fall into the normal risk factors (not overweight, normal arch of feet, and not excessive exercise) and it does not seem to respond to treatment. Sometimes I have trouble getting my breath especially reading out loud. My eyesight has definitely gone downhill in these last two years. Sometimes I can hardly read and other times it is better (I know about degenerate eyesight from age but I don't think this is it). I have had about 10 episodes in the last year of severe cramps in my lower calf muscle during sleep so painful I wake up screaming. The cramp lasts about 30 seconds. If they lasted 5 minutes I would probably pass out. Most of the time I do not sleep well and my legs are usually sore when I wake up. Here is the weirdest thing and I am really anxious to hear if anyone else has experienced this. I have not had a viral respiratory (cold) in 2 years. Everyone in my house (my wife sleeps right next to me) has 2or 3 a year, friends at work, etc all regularly expose me. I have always gotten 2 or 3 a year but now I appear to be immune. Anyone else notice that? Is it possible with my chemistry change the virus can not get a foothold? Anyone else relate to these different maladies? I can't believe they are not related? They all started around the same time on a guy who was always well otherwise.

Replies(7)

luckyme

replied on January 29th, 2008

New User

polycystic kidney disease

This is in response to peace4u's posting regarding his symptoms. I am aware of the problem with leg cramps and active bowel. The former is likely a result of low CO2 in the bloodstream and the onset of anemia- you can take sodium bicarbonate under the care of your physician to ameliorate the cramping. Also stay away from all dark sodas and alcohol (wine in moderation is ok). The stomach/bowel issue may be the result of medications that you are taking- ask your doctor. This is frequently the case, especially if you have been on some meds for a long time. As the disease progresses, you will probably need EPO to address reduced hemoglobin as the kidneys continue to fail. That will help stop any chills or dizziness or weakness stemming from the anemia. Also will increase your appetite if it has been lost.
Hope this helps and good luck!

angelina33

replied on March 2nd, 2008

New User

PKD

My Father has PKD and irritable bowel syndrom. He complains of leg cramps as well, and associates them with taking too much fluid off while dialysing. I know that numbness in the feet is a sign or neuropathy which is a result of kidney failure. Just wanted to share this info with you.

take care

oumatoet

replied on March 14th, 2008

New User

OFD Disease - Kidney failure

Does anyone have any information regarding Oral, Facial, Digital Disease? Kidney failure apparently stepped in due to this disease. It would be greatly appreciated.

dawnglover

replied on March 22nd, 2009

New User

post by peace4u on Jan 9th

I've had many similar experiences; irritable bowel, failing eyesight, bad lower leg cramps and, most interetingly, absolutely not a single cold, flu or virus in many years. I always thought that was bizarre, considering my kidney function is low and you'd think that would negatively impact overall susceptibility to germs, but now I'm wondering if some of these things are somehow connected. I'm female, 52 yrs old and in excellent health other than PKD and the above. Hope to hear from you.

Dawn

TiaraTiara

replied on July 24th, 2009

New User

PKD and bad breath!

Hello, I am 21, I have recently been diagnosed with PKD (my mother, 2 aunts, 3 uncles, 2 cousins and 1 sister has it)... I pretty much know how to handle the effects, I was wondering if anybody was experiencing a bad taste in their mouth and very bad breath? My oral hygiene is immaculate, it always has been, so I am sure this linked to my PKD. I was hoping somebody could provide me with some advice or tips on how to get rid of it (if they are experiencing it!!!) Thanks hope to hear from you!

jdiakiw

replied on August 19th, 2009

New User

pkd symptoms

I am a 72 year old male. I have had multiple cysts on both kidneys and now on my liver . my creatinine reading are at about 143 for 2 years now after dropping from over 160 when on drugs metabolized in the k's recently my kidneys are increasing is size ( an MRI in dec 08 had left at 10cm and an ultrasound in aug had it at 15cm! ) my 24 hr urine test was 80% 2 years ago and still is 80% in august. because of my kidney growth however ( both), Dr thinks I have PKD 2 is there any other reason for the increas in kidney size? if I do have pkd 2 how long will it normally take to need to go on dialysis? dr says there is nothing to do . . are there other treatment options?

Bronny

replied on August 27th, 2009

New User

PKD

I like Dawn am 52 and have recently been diagnosed with PKD. I have found the same as Dawn and the same symptoms as in the post by 'peace4u'. I think all the symptoms are related but the medical professionals won't acknowledge it (not where I live). I haven't had a cold or flu either for years - it is very weird. I'm sure the cysts in the kidney are somehow related to an inability to digest certain types of protein (and maybe other foods too)that is why so many people with PKD complain also about Irritable bowel. I have had to stop eating gluten, dairy products, yeast, avoid alcohol, coffee, tea (i.e. caffeine)and generally stick to a plain food diet without too many additives. I feel better by doing this and it has made a big difference to pains in my legs and irritable bowel and my breath has improved too. Hope this helps Smile

Bronny.

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