Feel free to add your profile so we'll now who you are and how PKD has affected you.

 

Just don't forget, this is a public group, so if you leave your emailaddress everyone can see it.

 

In case you use the list view and you find the page a little crowded, press on the button before the name to get a nicely organised view of the profile you want to look at. To return to the list, hit the "list view" button on top of the page.

 

I prefer the detail view, less members on one page but very viewable. 

 

 

 

I'm 3-1/2 years post-transplant, after having spent a year on dialysis. Prior to that, I had one kidney removed partly due to the size and discomfort but also to make room for a transplanted kidney to fit. Currently everything is going well, the transplant was a wonderful thing and allowed me to return to as normal a lifestyle as possible. I have no complications but do deal with drug side-effects such as shaking hands, weight gain and moon face, heartburn and other digestive upsets, etc. but they're all a very small price to pay! I live in Canada and work full-time as a Network Administrator, specializing in security and malware.

 

Diagnosed in 2000 after years of high bp.Discovered a lumb in my stomach. It was my very big liver full of cysts.

Iam 45 years now and had a livertransplant for nearly 6 ½ years ago. Kidneyfunction is still about 50 % but I am doing fine at the moment.( I still have my own kidneys)

Hi everyone, I chose this title as a) I was getting fed up with trying to get into the new group - 6 attempts-and the computer was so slow that afternoon refusing all my passwords , and b) in French the expression " en avoir plein le dos" means to have had enough. Also the " dos" is your back, how apt for kidney disease sufferer?

 

I am 49 was diagnosed in February this year when a  US scan showed 8cm cysts in my kidneys. My maternal family has PKD, my grand father died of it in 1968 aged barely 60. His 2 sisters had dialysis.Both his children: my uncle- who died of pancreatic cancer this autumn -and my mother  also have inherited it. So has my first cousin- aged 46- and my sister - aged 44. My 3 children are still too young to be tested and  after having read the forum all Spring time in the previous pKD online chat room I have reservations as to the test  and its implications for their future insurance/mortagage and employment prospects. I am working full time. i am generally very tired by 8 p.m and need lot of sleep. I cannot drink more than one glass of wine so even though I was born and bred in France I am not typical.

 

I have spent all my working career in language teaching with the past 16 years in HE. I love literature, theatre, singing, music, travelling, raising my children : 18,12 and 5 years old.I look forward to the future and hope my kidneys will not deteriorate too fast. I saw the neph from the Churchill  Hospital in Oxford. It took me a few months to cope with the diagnosis mainly because as I had my children late and thought that I would live very old to see them through HE, that I would travel in my retirement and such daft ideas. Would love to talk to  people in a similar boat. Merry Christmas every one and thank you for your constant support and optimism.

I am 46 years old with PKD  and have been on home hemo for 1 year. Boys 21 & 23 both with pkd. Still waiting to get on the transplant list, have to have one kidney removed before that can happen.

I was formally diagnosed in 1999, however, I had been told at 15 that there were cysts on my kidneys. At present am not taking any medication just seeing the consultant once a year & having regular blood pressure check-ups with the GP. My Dad also has PKD & he is due to start dialysis this year so it's quite a family affair really. Good news my dad is now finally on the transplant list, so the wait for a new kidney no begins. My blood pressure is starting to creep up. I am also going back to university in October to complete a degree in Social Work.

Diagnosed in 1986, High BP & Cholesterol both well controlled at present with a combination of medications. Kidney function still falling atabout 1% per month now 18%.  Checked for aneurysms in 2004 which was OK. Recent problems with tirednes, shortage of breath and oedema. Recent problems with high potassium, so now on a low potassium diet. Diagnosed this year with diverticular disease. Started to undergo tests for transplant, chest x-ray, ecg and echo which have all come back as OK. 

Grandmother died of PKD  in early 1960s- nothing they could do in those days I guess.  Father did dialysis for a couple of years but then died post transplant in late 1970's when the drugs were not as good as now, and infection killed him.  I suffered from high bp for several years but kidneys finally became useless in 2003 when I had a tx from my wife.  Had a bit of a rough time whilst in hospital, and the drugs sent me crazy - paranoia and delusion - but a change to tacrolimus crured this.  No rejection, put on loads of weight but after about 18 months this began to reduce, but slowly at about 1kg every 3 months.  I could do much better but I like wine and beer - helps keep the kidney flushed through.

 

No kidney pain in the past but this is just starting to occur.  No blood in urine either, except when some idiot knocked me off my bike.  Cysts in liver, and existing kidneys too big to measure according to ultrasound lady!

 

Concerned about members having liver transplants (due to pkd?).  I had always thought that liver cysts would not affect liver function too much.  Am I wrong? Comments anyone?

 

 

Hhhmm...I am a mom of three.  I was diagnosed at 23 with Polycystic Kidney Disease.  I t was inherited from my father's side of the family of whom I believe ALL my grandmother's siblings had and have since left us as well as my father and ALL of his siblings have.  My uncle, one of his middle brothers has already had a transplant but, the others are seemingly fine at the moment as am I except for the fact that I also have diabetes which comes from my mother's side and also from bad lifestyle habits! (Being overweight) We lost my father in 1994. Not too long after we found out that I had the disease actually.  They felt bad...guilty...like they shouldn't have chosen to have me.  I guess if I believed that I wouldn't have three children of my own.  (Hopefully they won't be bitter when they inherit the disease as well...it seems pretty inevitable given this family track record.  As far as I can tell not one person has escaped without the PKD gene!)

However, there is always hope!