I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: nholleger on April 03, 2013, 12:08:40 PM

Title: Nadine, new to these boards, PKD
Post by: nholleger on April 03, 2013, 12:08:40 PM
Good Afternoon, My name is Nadine and I am 45 years old and recently diagnosed with ESRD.  Nice shock!  I have 15% clearance and am trying to get a feel for dialysis and what to expect.  It has been suggested that I do PD, but I have 2 small dogs that "own" my house and I worry about infections.  Any thoughts?
Title: Re: Nadine, new to these boards, PKD
Post by: MooseMom on April 03, 2013, 12:19:53 PM
Hi Nadine.  PKD is an inherited disease, usually.  Do you have family members with the same disease?  You mentioned that you were shocked to get a diagnosis of ESRD, so I am assuming that you are unaware of anyone in your family with it.  I hate assuming anything. LOL!

This is a really good place to start getting information about different modalities.  We have IHD members who use all modalities in existence, and many of them have pets.  I know there are members who are on PD and have pets, so maybe you could have a look at the home dialysis forum and find some information there.  There are specific things you can do to reduce the risk of infection.
Title: Re: Nadine, new to these boards, PKD
Post by: nholleger on April 03, 2013, 12:25:45 PM
My father had PKD and passed away when I was young.  I remember him being on dialysis and knew in my mind about it but didn't know I had it until I only had 15% function.  I went to the doctor with what I thought was a kidney infection only to be told it was more permanent.
Title: Re: Nadine, new to these boards, PKD
Post by: MooseMom on April 03, 2013, 12:36:30 PM
Are you saying that you didn't know you had PKD until just recently?  Sorry if I'm being thick; I just want to make sure I'm not missing something here.
Title: Re: Nadine, new to these boards, PKD
Post by: nholleger on April 03, 2013, 12:44:50 PM
Last April I went to my family doctor with low back pain and dark urine.  He did blood work and I pee in a cup and heard nothing so I thought there was nothing to find.  The pain continued so I went back.  Blood work and pee in a cup.  This time I asked the results be sent to me.  Numbers were a mess and I didnt know how to read it but knew something was wrong.  I called and he gave me antibiotics for an infection.  Pain continued and dark urine.  By now I am really tired, so I go back.  He referred me to a nephrologist.  I go to this new guy and he does blood work and pee in a cup.  Gives me antibiotics for 30 days and a follow up blood work and appointment.  I go to the appointment and it is a different doctor in the practice.  I sit down and he strolls in and says, "what kind of dilaysis do you want to go with".  Wait, What!

First I hear anything about being in renal failure.  I thought the man had lost his mind. Got a second opinion and sure enough, renal failure.  Although I knew my dad was sick and I guess I knew it could happen to me but I guess I thought it would be gradual and I would know it was coming.  All the years of bloodwork and never was it mentioned to me there was a problem until it was a BIG problem - not to mention I am 45.  I thought it was something to be concerned over when I was much older.   So, tons to get my head around and get it around quick.
Title: Re: Nadine, new to these boards, PKD
Post by: MooseMom on April 03, 2013, 01:22:53 PM
I am absolutely gobsmacked that after all the bloodwork and cup-peeing, NONE of these docs found anything wrong.  Did any of them ask about your family history?  Did any of them know that your dad had had PKD?

Looking back, I suppose your progress to renal failure WAS gradual in that it had been happening for 45 years.  I am really sorry that no medical professional gave you more information, and I can't believe your neph just "strolled in" and delivered news to you in such a dismissive manner.  No wonder you were in shock.

Well, I guess the good news is that you still have time to educate yourself.  Your egfr is low enough that you can be referred to a transplant clinic if you'd like to pursue that particular treatment.  Have you thought about transplant?
Title: Re: Nadine, new to these boards, PKD
Post by: Sydnee on April 03, 2013, 01:48:25 PM
Hi welcome.
I have pkd and will be starting PD sometime shortly I'm 38.  :shy;
Sorry the doc was so Callas. Though at least he told you I'd bet the other 2 docs saw the end coming but didn't say a thing.

As for the animals and PD, my hubby has been on dialysis since January 2012 in August he switched to PD. No infection so far. We have 4 dogs ( 2 are outside most of the time, 2 are lap dogs) 3 cats, 2 llamas and a milk cow. Only the dogs and cats come in the home. We also have 4 children 18, 15, 11 and 6. The only thing we were told to watch for is that the animals aren't in the room when we hhok and unhook . Plus us adults can't change the cat box ( dang LOL ) seems to me the kids make us sicker than the pets last week we all got the sstomach flu.
Title: Re: Nadine, new to these boards, PKD
Post by: Angiepkd on April 03, 2013, 03:15:13 PM
Hi Nadine! You are in the right place. Lots of helpful people on IHD!  I am so sorry about the way you received your diagnosis. I am 44 and have PKD. I was diagnosed in my late teens by ultrasound after a kidney infection. I have had 44 years to prepare for dialysis, yet it wasn't as easy as I thought it would be. I do home hemo with NxStage. I wasn't able to do PD because of the size of my kidneys and many past abdominal surgeries.  I hope PD works out for you!  :welcomesign;
Title: Re: Nadine, new to these boards, PKD
Post by: MaryD on April 03, 2013, 03:44:14 PM
Hi there, Nadine!  And welcome.       :welcomesign;

I do PD and have two cats (mostly indoor) and the only trouble I've had was not due to the cats but to an infection involving an upper respiratory bug.  It had nothing to do with the cats.  The cats are in the room when I do my hook up, but nowhere near me.  I am the only one here so I have to do the kitty litter.  The cats don't jump around or up on anything, but I assume that they may have and clean any surface as if they had.  I have an untidy house with fibre everywhere from my textile crafts and the cats, but it is cleaned regularly.
Title: Re: Nadine, new to these boards, PKD
Post by: lmunchkin on April 03, 2013, 06:24:18 PM
Welcome to IHD.  Great Bunch A Folks!

Again welcome & God Bless,
lmunchkin  :kickstart;
Title: Re: Nadine, new to these boards, PKD
Post by: nholleger on April 04, 2013, 06:08:26 AM
Thank you all for the warm welcome. I have a question about kitty litter. My dogs are litter trained. Does the same rule apply to dogs and not changing litter box?  Can't imagine hubby volunteering for that! Lol
Title: Re: Nadine, new to these boards, PKD
Post by: Grumpy-1 on April 04, 2013, 08:19:54 AM
Nadine  welcome   I was on PD for 3 years before getting an infection.  Now on Hemo waiting to get back to PD.  My wife and I host our kids back in the house every so often and they bring thier dogs.  It seems that the dogs didn't like the smell of the room where I did PD and they would stay out on their own.  No issues about infections from them.  I'd say go for it.  BUT do some research into PD and home Hemo and in clinic hemo before you decide. Each has pro and cons.   Grumpy
Title: Re: Nadine, new to these boards, PKD
Post by: Deanne on April 04, 2013, 08:56:52 AM
Hi Nadine,

I'm not on dialysis yet and am trying to get a pre-emptive transplant. If/when I do need to start dialysis, I'm choosing PD, too. I live alone with three cats and two dogs, so no one else to pick up after them. My neph knows about them and never raised an issue. I went to a dialysis center Q&A session and the only thing they said was to keep the cats off the PD equipment. No issues at all with the dogs. My transplant center was the only place to question anything, and the only thing they asked is that I don't get any more pets right now.

I'm sorry you received your diagnosis in such a shocking way.  :Kit n Stik; to your doctors!
Title: Re: Nadine, new to these boards, PKD
Post by: Sydnee on April 04, 2013, 11:34:01 AM
No the "dog litter" would not be an issue. Cats can carry something ( the name escapes me right now) that can be present in the litter if can affect pregnant women too. But dogs don't carry it so no worries.
Title: Re: Nadine, new to these boards, PKD
Post by: MooseMom on April 04, 2013, 12:43:15 PM
No the "dog litter" would not be an issue. Cats can carry something ( the name escapes me right now) that can be present in the litter if can affect pregnant women too. But dogs don't carry it so no worries.

I think it is toxoplasmosis.  I had a friend who had two cats, got toxoplasmosis while she was pregnant and miscarried.  It was horrible.  I'd never let a cat near me even if I were the world's healthiest human.
Title: Re: Nadine, new to these boards, PKD
Post by: Poppylicious on April 08, 2013, 03:41:17 AM
 :welcomesign; Nadine!
Title: Re: Nadine, new to these boards, PKD
Post by: spookytoo0 on April 13, 2013, 04:38:47 AM
Hi Nadine, I'm 47 and started in centre hemodialysis on the 26 March 2013 for my PKD.  eGFR 11 - 13 but struggling with nausea and vomiting and loss of appetite.  I've had 12 years to get used to the idea of dialysis and think I'm coping quite well so far.

We will get through this together.   Spooky