Anyone w/ PKD?

[Black]

My husband is 63, was diagnosed w/ PKD about 18 months ago when creatinine was 2.2, had his fistula done 1/26/06, -- exercising hand to develop the fistula and hoping kidneys will last at least a few more months.  January labs showed creatinine 4.3, GFR 15.

Anyone here on dialysis w/ PKD kidneys?  If so, what were your levels when dialysis was started?  Are your kidneys still functioning?  Has anyone mentioned removing your kidneys?

Lorelle

[susie q]

I have PKD... found out when I was 20 after the birth of my second child.. I am 48 now and have been on hemo for 2 years..  I have no kidney function..  I have a lot of pain when cysts burst.. Doctor doesn't seem to be in a hurry to remove them, not sure I want to either..
My first attempt at a fistula did not develop.. so I have a catheter in my chest.. I am scheduled for another fistula next month.. freaks me out.. I hated the first time..
So far, my kids, ages 27 and 28 show no signs of having any problems..  hopefully they won't.. I also have 2 grandchildren..3 and 8..
Hopefully I will be able to get a transplant soon and get my life back to somewhat normal.. Lol..

[Ginger]

I have PKD and was diagnosed in my 50's and am now 61. I have been on PD now for 1.5yrs. My kidneys are huge and palpable into my lower pelvis. I started PD when my creatinine was at 7. I still have some residual function. Without dialysis my gfr is only about 5-6%. I do pd with a cycler at night and do not carry fluid during the day. I am on 'the list' for a transplant and have been for 3yrs. By cycling at night (every night) I am able to continue most of my normal activities, and have continued to work. At this time, no one has talked about removing my native kids but I am starting to get concerned about whether or not there will be room for another one.
Check out Homedialysis.org for a variety of home dialysis therapies. There are less dietary restrictions when doing PD or daily hemo.  Ginger

[mark j]

I was diagnozed with  PKD in 1990, and started dialysis august 05 when creatine was 7

My Kidneys were also very large, and I had one removed in Oct to make room for a transplant ( whenever that day comes)

[Black]

Any updates?  Anyone new here w/ PKD?

Ginger, Still on PD?  Have your fistula yet? Kidney/s removed yet? 

Susie, fistula done yet?

Owen, you still here?

Mark, do you feel any different with the kidney removed?  Any difference in comfort,  pain level, lab work, or overall health?  My husband's kidneys are now so large I am beginning to worry about them crowding his other organs and wonder how much of his high BP is from them constricting blood flow.  He has been fortunate to have only occasional pain but the dull ache is always there.  He's not planning on getting a transplant so they really do not have a good reason to remove them, at least not yet.

Every kidney disease has it's own set of problems and kidney cysts/size is just one of the expressions of PKD.  Does anyone else have the heart problems, brain aneurysms, diverticulosis, or liver cysts?

[charee]

Hi Black i must of missed this thread , i have pkd also cysts in the liver and diverticulitis. I have just had a second attempt at av fistula which so far is doing what it should be .  Dr appointment on Monday to see when i will  start my training for home hemo hoping it will be some time in the new year and not in December as they thought. will just have to wait and see....

[Ginger]

Hi Black, update on me.
I am still doing PD and doing well on it.  Got called in July for a transplant which I did not get due to not having room for it. My husband tells people that 'she won the lottery and did not get the prize'.  I am in the process of getting a fistula started--second try this Tues--so I will have one ready for when I have a kidney removed sometime after the first of the year. I have been put on hold on the list until I have a nephrectomy. The U of Minnesota will not do both surgeries at the same time. I found out later on a consult at Mayo that they would have. I am also trying to find a surgeon who will take a kidney out without too much damage to my peritoneum as I would like to be able to return to PD after things heal from a nephrectomy if possible. I really like the freedom I have with PD, although any dialysis sure puts a crimp in easy travelling.

[Black]

Hi Black i must of missed this thread , i have pkd also cysts in the liver and diverticulitis. I have just had a second attempt at av fistula which so far is doing what it should be .  Dr appointment on Monday to see when i will  start my training for home hemo hoping it will be some time in the new year and not in December as they thought. will just have to wait and see....

Yeah, starting at the holiday may not be good, but if you can rush the start and get trained by Thanksgiving, then you'll be able to eat some of the holiday foods you'll miss if you don't!!   Actually, we're at the same point.  Mike goes Tuesday to get last blood results -- we're holding our breath.  That's the visit with the Neph when we'll finally decide whether to get started now or try to wait until the second week of Jan.

How large are your kidneys?  Have you had the chronic infections and stones?  Ever had cysts infected or rupture?  Mike has been very lucky and had none of that, I wish we knew why so we could pass the info along to help others.  Of course, it could be the particular gene he inherited, but I really think it may be because he drinks a lot of fluids and always has.  Years of too much coffee and too much "southern sweet tea" may not have been as bad as the neph said it was.

What have they said about your liver?  Liver function affected at all?  One person told me that her liver is several times it's normal size and she still has normal function.  How bad is the diverticulitis?  Have you had to change your diet or take any meds?  Mike hasn't been screened for either yet -- no insurance.  When Medicare covers him, he'll have to do that -- and check for brain aneurysms too.  Have you had that done yet?  If so, what did they do?  Brain scan/CT or ultrasound or MRI?

Just curious, did they tell you to exercise and enlarge the veins before and after the fistula surgery?  No one even mentioned it to us.  I found out on-line that he should have been exercising for months ahead of surgery.  He did have a few weeks before because we had to find another surgeon (first guy was not a vascular surgeon and was not optimistic -- at least he was honest about his skill ), and then he started exercising again as soon as the surgery healed.  A tech at a DaVita clinic we visited said it is ready to use when he needs it, so apparently exercise is working!!

Do you have family with PKD?

[charee]

Last scan showed that my kidneys were both around 24cm, liver twice the normal size but so far has normal liver function.

 I to have been lucky with cysts bursting and infections it has happened but i only have needed antibiotics twice  in 5 years.
I still have 2 cups coffee , and sometimes green tea, some say coffee promotes cysts growth but my Dr doesn't agree.
I drink lots of water everyday also and i think that helps, I still enjoy a beer or 2 but not as much as used to nothing seems to taste the same these days.
I have had a MRI and am very lucky not to have had any brain aneurysms.
 I only have had one flare up of diverticulitis which was very painful but cleared up with a course of antibiotics, and i make sure I eat lots of fibre and fruit and vegetables.
I was didn't do any exercise before  my fistula surgery  but have been squeezing the rubber thing now that it has been done, I had to ask about it no one told me I read it here and asked seems we have to ask about things that I think that they should be telling us.Lucky that I found this site is has been a wealth  of information.
Both my sons have pkd (21 and 20 years old ) but have no problems as yet .No one else has it , they think i mutated the gene both my  parents have been tested and they are clear .

[Nan]

Hi...I was diagnosed with PKD when I was 42, it was then that my mother "admitted" to also having it, as did her mother who died of a brain aneurysm at age 61, my mother's brother who started dialysis at age 82, and my own mother who died from aneurysms also at age 67. My younger brother was diagnosed at age 39, and my own daughter at age 26, who sadly was born with just one kidney....so I am worried about her. I also have my liver covered, I need to find out the "size" of my kidneys and liver...I have asked the dr...am waiting for his answer. I have had MRI's done....but because of my high blood pressure and headaches...and losing both my grandmother and mother to aneurysms, this is my concern. My 84 yr old uncle and I are the only ones that have gone on dialysis, but I have an 82 yr old aunt who they are looking at putting a fistula in her arm, and dialysis in the future for her. The 50% of passing the disease down has proven correct in our family. Ginger, I would love to talk to you, because we are in the same situation and both dealing with the U of M...it distrubs me that they won't take out the infected kidney???!!! Yes...I have had two cysts burst....extreme pain....much bleeding....fever....infection....in the hospital for a week....not fun...and also two kidney stones....yikes.....I'd rather have 5 babies naturally....then trying to pass those again! This is soooooooooo good to be able to talk to "real" people, honestly about these situations!

[Ginger]

Nan,
I would love to talk with you. I will PM my phone number to you. We can commiserate about our respective kidney problems relating to transplant.  I am having a fistula redone tomorrow and will be working this PM, getting home at midnight and then having just enough time to get my PD run in before going back to the hospital to have the surgery.

I have no family history of PKD---at least none that I can find and both parents were dead by the time I was diagnosed. I will be talking with my transplant coordinator after I see my urologist in another week.  I had stones surgically removed from my left kidney a couple of years ago and now that the stones are gone, some less pain. Those stones bouncing around inside the kidney were excruciating!! Right kidney is still very large and seems to be getting bigger.

[Ken Shelmerdine]

I must be one of the lucky ones. Either that or something is mimicking  kidney failure in my blood results. A have PKD but never had any symptoms I  feel 100% on or off dialysis but my renal Doc says it won't last so I just take every day at a time and hope I'll feel well for as long as possible.  Before dialysis my lab results were as follows.
Sodium          141
Potassium       4.8
Urea              29.4
Creatinine      659
GFR                8%
Calcium          2.45
Corrected Calcium    2.45
Albumin            40
Phosphate       1.55
Bicarbonate        26
Alkaline Phosphatase     75

My kidney function is 8% but I still have full urine output thank god and I hope it continues that way for as long as possible  and I have no fluid retention. Blood pressure is typically about 115/82 with medication and about 145/95 without.

As regards the size of my kidneys, ultra sound scans have shown that they are slightly enlarged but my renal physician cannot feel them on examination. Removal has never been mentioned as I don't get any pain from them. Best of luck to your husband.
PS: Was your husband offered PD at all?

[Meinuk]

I have PKD.  My mother had PKD and died at age 44 with ESRD.  I was diagnosed as a child with enlarged kidneys.  I was on prophylactic septra, and got all sorts of counseling.  I had uneventful childhood and teenage years, (kidney wise).  One bad infection in my twenties, and passed my thirties uneventfully, until I hit 37, my first episode of a burst cyst.  OUCH to the extreme. I had my fistula placed in May 2005.  My creatinine was 3 - 4.  In Spring 2006, two more cysts burst (the most pain I have EVER experienced in my life).  For the past two years, my cratinine was stable at >5, I was on epo, calcitriol (I have hyperparathyroid), chromogen and bicitra (low co2).  I also have unremarkable (to the radioliogist) cysts on my liver.  (personallly, I think that all of my organs are remarkable!)

Last December, even though I've lived with kidney disease all of my life, I thought that I had a terrible cold.  I couldn't seem to get over it.  January 10, 2007, on my monthly visit to my nephrologist, he suggested that I was near dialysis.  I said, OK, I'll start next month after my vacation. He looked at his watch and said "we'll see".  He then told me that he wasted me to meet with a social worker to " make sure that I am ready to start dialysis" - but she wasn't available, so I went to a movie instead.

  I went to work the next day and announced that my hours would be changing in February.  My bosses took me out to lunch, we talked about the future, and joked a lot.  We went back to work, I finished my day, went shopping and got home at 9:00.  I had two messages.  Both from my nephrologists office.  He needed to see me now.  Well, at 9pm, no one needs to see me, so, I called my boss to say that I would be late for work on Friday, and went bed.

  When I woke up on Friday morning (January 12th), I realized that the day had come.  40 years of running, and now was my time to be tied to the machine.  (I can't do PD - scarred peritoneum and kidneys are 20 & 21 cm)  At 9am, I called the receptionist at my Nephr's office, and she laughed at me.  "you'll never die 'cause death won't be able to find you!"  I told her that I could be there by 10:30.  I still dawdled before I  walked to the train.  By the time I got to the office (my Nephr's office is next to a dialysis unit), an attending and a social worker were waiting for me.  I was uremic.  I slowly nodded when the Dr. listed all of the all of the symptoms.  Denial was over, my numbers had tanked, and I was about to have my first dialysis run. 

The social worker and Dr. walked me to the unit, and sat me down in a chair.  It was all rather surreal.  Of course, my very first needle stick was an infiltration.  (I wrote about all of that in my introduction post).  Good news though, I am now 1 1/2 months into dialysis, and last night I had my first run with no alarms!!  After I took my final weight, I did a little happy dance.

  Our disease had a foundation and so many resources. It can be overwhealmiong.  There is a lot to learn.  I'm lucky, I've had all of my adult life to decode and look at the info.  (I still don't understand it all - and there is so much out there).  I've been very lucky to have some of the world's best physicians. (no joke, I was living in Boston in the 80's and it spoiled me for medical care) There is a symposium in March 2007 in NYC.  I'll post the info next week.  (the info is at work)

I have to say, if I hadn't known that I was headed for dialysis, I don't think that I would have taken the chances in life that I have.  PKD pushed me to really live, and I did.  Now, I am in a new chapter of my life, more settled, tied to a routine, planning for the future. When before, I was spontaneous.  Now, I am spontaneous, but it involves dinner plans, not international travel. Just wait until I get my transplant though, I'lll be back!

[mymoonring]

Hello, Yea i have PKD, traced it back to a civil war grandfather, i have been doing hemo for 2 years now.Going to start Home hemo in a few weeks. The PKD foundation may be able to help you.I found out in my 30s when i had it I am now 46. My kidneys are huge.Thank God the cyste havent broken yet.My creatine was about 8 when i started treatment. have any more questions emaile me 

[RuthWells]

Hi, I just joined (came out of lurk mode) so that I could respond to this thread!  My father has PKD (2 kidney transplants and a liver transplant and still kickin') and I was diagnosed with PKD at age 19.  Completely asymptomatic until about 1.5 years ago, when my BP started going up and my creatinine rose from .9 to 1.2 to 1.4 at last check (I'm due for new labs in a month or so).  BP is now well under control and I am eating a very low protein diet and avoiding caffeine, on my neph's suggestion.

I am 39 now and my kidneys are both quite enlarged, with cysts up to 7cm in both.  (I'm 5'4" and petite, so I REALLY feel them, which is a bizarre sensation!)  The right one is settling toward the front of my abdomen and is frequently in the way -- I've named him Fred.  The other one, which gives me a lot less trouble as it is more situated toward my back, is called Ginger.  Just one of the ways I try to amuse myself against the realities of this disease.     

I have two sons, ages 9 and 11.  The 11-year-old had pancreatitis a few weeks ago, and they did an abdominal ultrasound to rule out any further complications.  Of course, they found that his kidneys were riddled with tiny (sub-cm) cysts, so he is now officially PKD as well, which just about broke my heart to hear.  I have not had my younger son tested, and will not for the foreseeable future.

A few people on this thread have mentioned having cysts burst.  Can anyone please describe this sensation for me?  I think I may have burst a cyst a few weeks ago, but it happened to be the first day of my period, and at first I thought it was a really bad, sudden cramp.  The pain lasted for about 20 minutes -- I gulped down 2 Ibuprofen when it started, and that may have helped ease the pain.  I was doubled over on the floor for a good 15 minutes with this "cramp", and it is very unusual for me to have such intense pain with my period.  I'd love to hear y'all's thoughts on this.


 

[Meinuk]

A few people on this thread have mentioned having cysts burst.  Can anyone please describe this sensation for me?  I think I may have burst a cyst a few weeks ago, but it happened to be the first day of my period, and at first I thought it was a really bad, sudden cramp.  The pain lasted for about 20 minutes -- I gulped down 2 Ibuprofen when it started, and that may have helped ease the pain.  I was doubled over on the floor for a good 15 minutes with this "cramp", and it is very unusual for me to have such intense pain with my period.  I'd love to hear y'all's thoughts on this.

My experiences with cysts.... 

The first one was intense pain, and nausea.  Unfortunately, it was on my right side, and the Dr.'s had to rule out ectopic pregnancy, appendicitis and gall stones before they would give me pain meds.  I also had bloody urine.  I had a mild fever as well.  Think of an ice pick chopping away at your side.  And then a dull ache.  If I moved, it was intense pain all over again.  It took a few days and quite a few vicodan to resolve.  After appearing in the ER, I had an ultrasound, x-ray and MRI to dignose a burst right kidney cyst.  I was prescribed pain meds and prophylactic antibiotics and sent home.

A month later, it was my left side, and by then I was an expert.  It started with nausea.  Then dull pain in my left side that built up to intense pain.  I also had a high fever, as it was infected.  I was fast tracked in the ER had an MRI and then was admitted on IV antibiotics and pain meds. My hospital stay wasn't the greatest, and I went home as soon as possible on antibiotics and vicodan. This time, I had no blood in my urine until over a week later.  (very dramatic)

The one constant with both of my burst cysts is that it took a few days for all of the pain to resolve.  Also, I have a general "unwell" feeling leading up to the cysts bursting.  Pain is usually subjective though, and if you have any kind of intense pain, you should have a follow up study to see if it is a cyst.  The biggest danger is infection, and that can really ruin your day!

edited because I can't spell....

[RuthWells]

Thanks for sharing that, Meinuk.  After hearing your experience, I am doubting whether what I felt was a cyst or not.  Can anyone else weigh in with their experiences?

[susie q]

I have had pretty much the same experience as Meinuk... the pain lasted a week or more.  hurt to move.
not fun. 

[charee]

Sounds like me also thats how i was diagnosed with pkd , never knew i had it till a cyst burst and went to the Dr with the pain..

[okarol]

My dad had PKD, the first indication was when the army wouldn't take him when he was 19 years old due to high blood pressure. At some point a doctor must have told him he had a kidney disease, but he never really treated it, according to my mom. Dad died at 28 years old from a cerebral hemorrhage due to hypertension. My mom had no idea he was at risk, and she also was never told it was hereditary. Someone told my older sister about that when we were in our 30's. My 2 sisters and my brother, and a nephew all have been diagnosed with PKD. None of them have advance at the rate my dad did. They are all being treated for hypertension.

[Ken Shelmerdine]

Are there any PKD people on this sight who, like myself,  are completely symptom free but nevertheless are on dialysis because of blood/lab readings. I'm getting really pissed off having to do dialysis when I feel 100% with or without it. They say it's hereditary but no-one in my family has ever been diagnosed with it. I've trusted the doctors, had my catheter surgery, PD training and have now been on dialysis over six months. It really hits me when I've just done a twelve mile bicycle ride and I'm felling exillarated and as fit as a flea and the next thing I'm setting up a dialysis machine and I'm thinking, is this shit real, is there some kind of mistake. Any one out there feel like this? 

[RuthWells]

That seems strange to me, Ken.  What is your GFR?  It might be worth getting a second opinion.

"They say it's hereditary but no-one in my family has ever been diagnosed with it."

We can't find anyone further back than my father with PKD, and his ancestors were all very long-lived.  The mutation has to start somewhere; you may simply be the first in your family tree.   

[angela515]

Ken you say you have no symptoms, whats your creatnine levels and such?

[Ken Shelmerdine]

Ken you say you have no symptoms, whats your creatnine levels and such?

 My CREATINE IS 720;    UREA 23; (I think units of measurement for urea are different in the UK than the States.) POTASSIUM 4.8; HAEMOGLOBIN 14.5;    PHOSPHATE 1.9.

Blood readings are the only signs that all is not well. Apparently I have only 8% function. Maybe I'm just the luckiest guy in the world of ESRF to be in kidney failure and yet to feel so well.

GFR: Well I usually get about 250ml of fluid off each night.

[angela515]

Ken you say you have no symptoms, whats your creatnine levels and such?

 My CREATINE IS 720;    UREA 23; (I think units of measurement for urea are different in the UK than the States.) POTASSIUM 4.8; HAEMOGLOBIN 14.5;    PHOSPHATE 1.9.

Blood readings are the only signs that all is not well. Apparently I have only 8% function. Maybe I'm just the luckiest guy in the world of ESRF to be in kidney failure and yet to feel so well.

GFR: Well I usually get about 250ml of fluid off each night.

Blood levels are readings, yes, but they are symptoms also. When i was in ESRF I had no outward signs and felt perfectly fine on the outside, only reason i found out I needed dialysis was b/c I was ditching work and said I went to ER that morning, they wanted a note proving it b/c I called out alot, so i went to the ER to pretend to feel icky and they drew labs,and said i needed t start dialysis. So your not the only one...