St. Louis PD patient

[Weggy]

Hey all,

I have been browsing these forums since I was diagnosed with kidney failure last year. I decided to sign up a while back, but never posted an introduction. My name is Dale and I live in St. Louis, MO.

You know, it is pretty amazing to find out you have kidney failure from severe knee pain. Right around Christmas of 2011 I used a rowing exercise machine. The day after using it I had pretty bad knee pain, but I blamed it on the machine. So, I put up with it for a few weeks since it was slowly getting better and I was sleeping on the couch to keep my legs raise (I broke an ankle in 2009 and elevation helped a lot.) On January 24, 2012 I woke up in the morning to go to the bathroom, but I couldn't get up because my knees hurt that bad. It took me about 30 minutes to get off the couch. I asked my fiancee to take me  to the hospital since I couldn't deal with the pain. I had some recent lab results due to other issues and they noticed the creatinine to be on the higher side (1.5) from my previous values. They ran more labs and determined my kidneys were not working. With my symptoms, they diagnosed with Churg-Strauss or Wegener's Granulomatosis. A renal biopsy confirmed it was Wegener's. Ironically, my last name is Wagner and my fiancee's last name is Strauss.

I started hemodialysis on February 6, 2012 in the hosptial. You know, the hospital put 45 pounds of fluid on me with IV saline. Hemo was a pretty bad experience for me since I was doing chemo at the same time. I was sleeping 14 hours a day and I crashed an hour or 2 after my hemo session. I wanted to do PD and I had my catheter installed on June 6, 2012. I switched to PD on June 25, 2012 and have been doing well since then. I am not on the transplant list for a few reasons. 1. I feel pretty good on dialysis 2. I don't want to deal with rejection issues 3. I don't want to take someone's kidney 4. I need to lose some weight. My fiancee offered her kidney but I just don't have the heart to take it.

Fun fact:
Old ladies at a hospital fertility center are  . I did the sperm bank since I was getting chemo and we want kids in the future so it was best to be safe. I had to go in at 5AM so I brought my fiancee with me. The first thing the old ladies asked were, "Is she here to help collect the specimen?" I left that up to my fiancee to answer...lol. When leaving the place, the same ladies asked, "How was it?" Most awkward morning ever.

[MooseMom]

Oh my goodness, such a diagnosis must have been a supreme shock!

I'm glad you are doing well on PD.

As for transplantation, I understand your concerns.  It is great that PD suits you, but will you feel the same a year or two from now?  Would you consider being referred for a transplant evaluation, at least?  The waiting list is long, as I'm sure you know, and you can at least be accruing time.  If you do not want a living donor, that's entirely understandable, but would you consider a cadaveric donor?  There are many people out there who would not want their organs to go to waste.  It is not selfish to desire a cadaveric transplant.

I'm glad you've decided to join IHD.

[cariad]

  Weggy!

Desiring any kind of transplant is not selfish in my view. Then again, I've had two living donor transplants, so I would say that, wouldn't I. We've had all manner of discussions, some of them quite philosophical, about whether it is selfish to accept a transplant, refuse a transplant offer, stay on dialysis, and so on. Please feel free to join us in any of these discussions, or start your own.

The thing with PD is you sound pretty young, and eventually it stops working for everyone. (I have heard 15 years as really the limit for how long anyone has been able to stay on it.) I would take MooseMom's advice and investigate the various contingency plans. I hope you are one who can break the PD record, but we won't know until that happens, or it doesn't.

Anyhow, not trying to overwhelm you on your first post - you sound like you're doing great and that is superb! I loved your 'bank deposit' story. Sadly, awkward days are pretty common as a renal patient as I'm sure you're coming to realise.

I look forward to getting to know you better!

[lmunchkin]

Welcome Weggy.  If your fiancee wants to give this gift to you, then please, do not deny her this Blessing!  I don't believe she would offer if it wasn't for her love for you.

Thats funny about the little ole ladies at the "Bank".  So cute!!!!

Again welcome & God Bless,
lmunchkin   

[Poppylicious]

  Weggy!

[Bajanne]

Welcome to our community, Weggy!  You have made a good decision to join this forum.  I know I did!  Here you will find information and support when you need it.  This is a place that allows you to rage, rave, or just vent.  You will soon understand that you are now part of a wonderful international caring and sharing family  .
I loved your intro.  Epoman, the founder of this site loved thorough intros.  And since I like coincidences very much, I liked the Strauss-Wegener thing!  And those old ladies!!
Please keep on reading and keep on posting.  We need to know how you are doing.  Not nosey, just family.
Looking forward to hearing more from you.



Moderator - Bajanne

[chiromac]

Nice to run into another person from STL.  Welcome to IHD.

[Rerun]

Hi Dale and welcome to IHD.   I'm glad you finally joined.  Hope to see you around lots.  Sounds like you are doing well.  I've had a transplant and it went well but I don't want another one.  I'm hard to match and I'm tired of filling the pockets of all these doctors as it is so why give them more.


Glad you joined us.

Rerun, Moderator   

[dawn24]

Hi Weggy!  I'm a lurker but felt compelled to post and say hello.  Undiagnosed Wegner's is what took my father.  He was sick for three months and it finally ended with him in ICU, coughing up blood. Very glad those knees hurt and you were able to get diagnosed and on the road to better health

[Weggy]

A bit late as I am lurker as well...unless I am on a tech forum .

Yeah, I am still unsure of the transplant because I know it is not permanent. However, I have been leaning towards getting a transplant. My fiancee wants to donate her to me, but we don't match. We can do the swap of kidneys of someone else is also in the same situation. I am still hesitant because I don't want her to run into health issues in the future. Diabetes type 2 runs in her family, but most of her family is overweight and do not live healthy lifestyles.

Besides that I need to drop some weight and my doctor is getting on my case about my weight. I am doing it one step at a time. My first step was to get back my stamina and strength and I think I am at that point. I lost a lot of muscle last year and felt like a blob of water and fat. Now, I am stronger than I was before everything happened and I only run out of breath if I exercise intensely. Last year, I was getting winded doing one flight of stairs. Next goal, drop 20 pounds of fat a year until I hit 220 (I am at 285 right now which as my weight before everything happened).

Nice to run into another person from STL.  Welcome to IHD.

St. Louis has been pretty weird the past year. I have run into a lot of people who know about dialysis (non-clinic/dialysis related) and ask me if I am doing hemo. Good to see another St. Louisian. I hope we do not have another heatwave like last year.

Side note: my clinic is AHDC in creve coeur.

Hi Weggy!  I'm a lurker but felt compelled to post and say hello.  Undiagnosed Wegner's is what took my father.  He was sick for three months and it finally ended with him in ICU, coughing up blood. Very glad those knees hurt and you were able to get diagnosed and on the road to better health

Funny thing, I had symptoms prior to my knees hurting, but I thought they were allergies. I had really bad nasal congestion in my left nostril. It was blocked from late Sept 2011 until I was in the hospital. I thought it was allergies since we had a huge mold count during Sept. I didn't have insurance so I dealt with it, but I never expected it to be very serious. By December, I was looking for an ENT referral, but by the time I found one...I was already in the hospital. Ironic

[chiromac]

That is Funny, my clinic is AHDC, but in Fenton.

[papacat]

Welcome to IHD Weggy     papacat