Question for PKD people

[pdpatty]

I have PDK.
I have been getting nausea almost everyday lately. It just hits and sometimes ends in vomitting. Is this a common sympton of PKD? I am on dialysis 3x week. Blood work is great,potassium ,great,posphorus only 3.4 clearance is great. But this nausea is `sickening'.

I feel as if I have a huge ball sticking out my right side. No pain but so very uncomfortable. Sometimes hard to get to sleep. Is this common in PKD?

Had a CAT scan couple weeks ago,showed it was PKD but they would not say how large kidneys are but I feel like everything inside is being squeezed. Is this my PKD?

[paul.karen]

I get nauseated every now and again but since i started D not nearly as often.  Think it is just part of the disease.

My kidneys also are very large and uncomfortable.  But for me they also cause me alot of pain.  As for sleeping yes it is painful/uncomfortable for me to sleep on either of my sides or my back.  But i just deal with the pain for the most part and take sleeping pills if i think it will be a bad night.
Inside feeling squeezed is likely due to your PKD.

I also seem to pop alot of the cysts on my kidneys which cause blood in the urine so if you see this dont be alarmed it is also part of PKD.

[Wat76]

Paul,

 When you pop a cyst do you bleed for a long period of time.  I popped a cyst Friday and I am still bleeding.  Plus I ate too much food on vacation and my stomach is swollen.  I have no fluid, but gas.  Can the gas in your stomach press against the cyst.  any other PKD patients experience cysts bursting, if so how long do you bleed. In the past when i ran to the hospital, i was told you have pkd, this happens.  Help

[pdpatty]

I not only have PKD BUT I have Ehlers Danlos Syndrome.

http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome

My skin will stretch and I believe that is the only thing keeping me from having the severe pain most PKD people have.

[brandi1leigh]

I have PKD nad have been on Dialysis for about 2 months. I'm still sick a ot. I vomit all the time. I never considered that it might be specific to PKD. I just thought it was part of ESRD in general.

[Wat76]

Brandi

or anyone with PKD, would you call so I can talk with you or anyone who has PKD.  I suppose to get a fistula in next month, but want to wait a little longer.  Don't know if this is the right thing to do.  I don't have sweling, vomiting or any other symtoms besides the pain in my side.  Was it because of the vomiting that you started Dialysis.  Someone help me to understand.

[Stoday]

  I suppose to get a fistula in next month, but want to wait a little longer.  Don't know if this is the right thing to do. 

Don't delay the surgery, Wat. Once you have the fistula and it's working, you will be ready for hemo whenever it's needed. It needs six months to swell up enough to be useable. If you don't have a useable fistula when you need to start, you'll be stuck with a catheter. Not at all nice!

Get it done and join our club! 

[Ang]

had  a  double  nephrectomy  over  the last  2  years, kidneys  got  to  about  29cm, feel  alot  better  lost  about  8kg, just  hangin  out  waiting  for  a new  kidney

[brandi1leigh]

  I suppose to get a fistula in next month, but want to wait a little longer.  Don't know if this is the right thing to do. 

Don't delay the surgery, Wat. Once you have the fistula and it's working, you will be ready for hemo whenever it's needed. It needs six months to swell up enough to be useable. If you don't have a useable fistula when you need to start, you'll be stuck with a catheter. Not at all nice!

Get it done and join our club! 

I totally agree! Get the fistula so that you have ample time for it to develop. I had 60% kidney function, within a year I was down to below 15%. It happened fast! Faster than I was prepared for. I wish that I had gotten my fistula earlier, because now I'm having a lot of problems with my fistula not being ready. I had to get a perm cath because the dialysis center couldn't get a second needle in my arm. Better to be ready than to put it off. That's my 2 cents.

[Wat76]

Thanks all, i guess I will go ahead with the fistula.  Wow cant believe you dropped from 60% to 15 % in a year.  If i post my number would you call me.

[FineWhine]

I not only have PKD BUT I have Ehlers Danlos Syndrome.

My skin will stretch and I believe that is the only thing keeping me from having the severe pain most PKD people have.

Oh my goodness, me too! I was in the Octreotide Polycystic Liver trial at the Mayo, and Dr Hogan diagnosed me with  Ehler's Danlos. It explained so many things like flat feet, hip problems, double jointed and baby fine hair. My skin peels off with bandaids. Yuck! How did you find out?

[pdpatty]

Oh my goodness, me too! I was in the Octreotide Polycystic Liver trial at the Mayo, and Dr Hogan diagnosed me with  Ehler's Danlos. It explained so many things like flat feet, hip problems, double jointed and baby fine hair. My skin peels off with bandaids. Yuck! How did you find out?


I was 10 years old when I was diagnosed with EDS. I had dilocated my kneecap and tore the carlidge. I was diagnosed at Children's Hospital in Columbus Ohio. That was 55 years ago.

Have they typed you? I was typed for 4 but that came back negative.The geneticist thought I may have the rare type 6. With PKD ,to test for that is probably impossibe now as  they have to test urine .


Yes,I too have all these trates . Except I have THIN baby fine hair.  I have yet to figure out which is worse,PKD or EDS. BOTH SUCK!

[pdpatty]

http://emedicine.medscape.com/article/1114004-overview

This is the most informative site I have found so far on EDS.