Hi, I'm new

[rdouble]

Hello, I found this site by doing searches about Polycystic Kidney Disease.  I have to admit I am not on Dialysis yet, but I will be soon so I have lots of questions.  I  am 46 years old, a wife and Mom of two teens.  I am a teacher, and I like information about any choice I make.   My kidneys are large and full of cysts and they are crowding my organs.  I have pain and pressure that are starting to really interfere with my life.  I am in the care of a nephrologist, and will be meeting with the doctors at Tufts in Boston to discuss my upcoming transplant. I have cousins who are willing to donate, and my husband too.  We have not started any testing for compatibility yet.  I am thinking about asking to have one or two kidneys removed before the transplant, because they hurt me and are limiting what I can do.  I want to know more about dialysis, since I will need it if I have mine out. 

[Poppylicious]

  rdouble! You've come to the right place to ask questions and find support; we're a lovely bunch of people.

[Joe]

Hi there rdouble, and  to IHD. You've come to the right place to get your questions answered. With this community, we've been there and done that. Ask away!

[Annig83]

Welcome!

[Simon Dog]

The key is to learn all you can about the various options, and find a neph who supports the style you want based on medical suitability, not his/her personal preferences.   My former neph was great, but he thought hemo was the only way to go "since you have the other days free".   He retired and his partner took over my case a couple of years before I went on D, and the new guy was very much in favor of peritoneal, which is the approach I had already determined I wanted if medically appropriate.  I've only been doing PD for 4 months, but I'm very happy with the decision.     Remember, in the end, how much of a choice you have as to modalities has as much to do with how much choice you demand as it does with how much is offered.

[boswife]

welcome and you've gotton great advice already so keep digging.  Lots of transplant people here so be sure to ask lots about that too.   

[Sleepyhead]

Hi Boswife and welcome. 

I noticed you are thinking about having your kidneys removed.  I had both of mine out in March this year and my insides are now much better (and the haemorrhoids cleared up as well although it took a few weeks.  I did get a nasty infection after the op and, unfortunately, was discharged before anyone realised and had a very rough time before finally realising I had an infection and going back into hospital.  If I was doing it over again, I would make sure I came off all temperature-lowering drugs (paracetomol in my case) 24 hours before leaving the hospital so that they could see my "real" temperature (as opposed to the one that had been artificially lowered by drugs). 

I have been on peritoneal dialysis and in-centre and home/nocturnal haemo (now on nocturnal). 

Peritoneal dialysis is done at home and is easy to learn (4 days' training).  You do it 7 nights a week (I think in some countries they do 6 - I am in the UK)
In centre haemo is done a bit quickly but, if you are only going on to dialysis short-term, it may be your best option.
Home and nocturnal dialysis takes quite a long time to learn as it is more complicated than PD.

Good luck with everything

Sleepyhead

[Sydnee]

Hi,

 

I have PKD too. Great to meet you.

[cassandra]

welcome to the site rdouble 

take care Cas