Hi From Kansas

[Lindia]

Hi Everyone -  Wanted to introduce myself.  I am the wife of a wonderful man who started dialysis in May.  He had kidney failure in 2001, due to a neurogenic bladder, malformed urethers and the diabetic drug glucophage.  He was very ill, and later was told that the doctors thought he had a 90% chance of dying.   That episode left him with about 30% kidney function and chronic bladder infections.  He lost more function in 2005 when he had bypass heart surgery and his kidneys failed again.  At that time, he had 7 bypasses, but luckily had his "tuneup" before a heart attack or any loss of function.  His doctors placed a fistula 10 years ago (after a botched surgery on his left arm that didn't work).  He's 63, and was able to retire from Boeing at 58, with medical insurance, which is such a blessing. His doctors (some good, some mediocre) thought his kidneys would totally fail years ago, and told him at that time, due to the chronic bladder infections - that before any transplant could be considered, his bladder, kidneys, urethers, etc would have to be removed.  He decided to put that off as long as possible, and we are being told now that this is such a MAJOR operation, that with his age, etc - they would not recommend it.  He does still have some residual function and is feeling more energy and some better since starting hemo dialysis.   We've been married 5 years, and last year we adopted our 7 year old grandaughter.   I still work in aircraft, and we are a busy couple, especially with our new daughter.  We've had years to mentally prepare for dialysis, but feeling so "out of control" over infiltrations, etc is really frustrating.  We also want to do dialysis with the Nxstage at home, and should be starting training for that soon.  If you made it thru all this -  thanks so much - and I will be posting LOTS of questions in other forums --  I also want to THANK YOU ALL, as I have learned a TON from this site.  Hubbys nephrologist (that I'm not really fond of) actually asked  my husband if there was any way he could unplug the computer --   uuummm -   NOPE !       

[MooseMom]

We have plenty of members who are using NxStage, and NxStage has a forum for users of that wonderful little machine.  That sounds like a great treatment choice for you, your husband and your lifestyle.

There is a lot of information here on this site.  There is also a great site I am very fond of...

www.homedialysis.org

I learned more there than from just about anywhere else, and they have a forum, too.  That is the best site I have found for technical information as it is moderated by a professional neph (Dr. Agar from Australia, although he's on holiday in Canada at the moment), a social worker, an expert in PD nursing and an expert in cannulation, all really good people.  But for support and info on a more personal level, and for when you want to feel like part of a community, IHD is the place to be, truly.

So, WELCOME!

[Rerun]

Hi Lindia and welcome to IHD.  I'm so glad you found us.  Are you in the Seattle area..... "Boeing"?    I'm in Spokane.  Opps I see you are from Kansas.  I didn't know Boeing had a plant in Kansas. 

It sounds like you guys are doing well and with NxStage you will feel more in control.

Thanks for joining.

Rerun, Moderator       

[Lindia]

Ha Ha Rerun -  lots of Seattle/Spokane people don't realize that Boeing had a large facility in Wichita, more than 75 years old, and very involved with building bombers for WWII.   Wichita people always felt like the "redheaded stepchild"  to Seattle.  However, a few years back, Boeing sold the big old plant, and we are now "Spirit Aerosystems" -  there is still a small Boeing facility with around 2,000 people here.  Its been quite a ride being sold, but we still manufacture all 737 fuselages here, and now we get to work for Airbus also !      

And Moosemom -  thanks for the link, that website in Australia is AWESOME.

[Ang]

 

[okarol]

Hi Lindia,
Welcome! Sorry about your hubby but happy you found us. My daughter had a "non-neurogenic neurogenic bladder" which was augmented using bowel tissue 6 years ago and it works great. She was rebuilt at USC University Hospital, where they use a similar surgery for cancer patients who lose their bladders. It was necessary as her old bladder would have damaged a transplanted kidney.
I hope to see you post more!
 
okarol/admin

[Bruno]

Hello Lindia and welcome. Yes, Dr John Agar is a world leader and his site is both a revelation and inspiring. I'm sure you'll find this site and meeting its life enthusers a booster. 

[Lindia]

Okarol - thanks for telling me about your daughters surgery,  I wish the neurogenic bladder was his only issue, but the malformed ureters really complicate things.  He has to have bi-lateral stent replacement every 3 months, to allow urine to flow.  I once asked his urologist if there was such a thing as a ureter transplant --  NOPE !!            Hey -  they can do hearts, lungs, kidneys, livers, etc --  but not ureters ... who knew ?

[willowtreewren]

Welcome, Lindia!

 

We were NxStage users for over 2 1/2 years (pre-transplant).

I'm looking forward to getting to know you.

 

Aleta