Introducing myself

[SuzanneFord]

Hi, I have stage 5 kidney failure from a drug I took as prescribed for 12 years.  I was on dialysis in center from May of 2006 to February of 2007 and then was lucky enough to be able to go off of it while still in Stage 5 until now.  I will be starting back on in center hemo October 7th.  I am on the transplant list and have gotten one back up call in May and then an upsetting call on Thursday offering me a very extended criteria cadaver organ because they said I had a high PRA, except my PRA had been tested at 0 and 5 and I have not had a transfusion, pregnancy nor transplant in between.  This happened once before and they didn't tell me then either, I happened to ask.  A retest showed the test was wrong and I found out that lab had been closed for false positives but no one had informed patients.  The high PRA was in July but again no one told me nor my nephrologist.  I turned down the extended criteria kidney because they said I would still need dialysis after transplant as it was expected to be very slow in working, this made no sense to me since I am not yet back on dialysis.  The person who donated was 68, a lot older than I.  I asked how I could get a second opinion on the bloodwork and was told only by listing at another transplant center so I am now waiting for a call back from my nephrologist.  He was going to try and speak to them about re-testing but if they won't I will multiple list at another center a few hours away.  There are 2 in the same city so I want his opinion which is better but haven't heard back on that either.  So mostly I am just very anxious to get information, get another PRA test and somewhat angry and nervous at all the mistakes my transplant center makes--there have been other mistakes.  Trying to hang in there though.  Hope that is not too much for an intro.

[kellyt]

    We're glad you found us.  Good Luck with your other testing.   

[Lilu323]

Welcome. I understand your frustration with your transplant clinic. I felt that same way about mine. Good luck with the testing.

[monrein]

  

[Sluff]

Welcome Suzanne to IHD,

I know how hard it is to get your hopes up and then get let down, hang in there. Thanks for introducing yourself and I hope you enjoy your time spent here. There is  a lot of information here and I'm sure you may have a story or two to share as well. Feel free to read and ask questions when needed. Post all you want. Maybe we can catch you in the chat room sometime.

Sluff/Admin

[Ang]

   to  the  IHD family

[napala turki]

Hi Suzanne,

Read a sad story of yourselves, however be with us.... feel free to ask question, they will answer it to their best..

[Joe Paul]

Welcome Suzanne, good to have you aboard.

[cookie2008]

 

[willieandwinnie]

Suzanne I'm so glad you found us. We have lots of information and tons of support. Keep posting. 

[peleroja]

Welcome to the group.  Come back and let us know how you're doing.

[SuzanneFord]

Thank you so much everyone for all your welcomes!  It helps a lot.  Still no word back from my neph. but I did find out that of the 2 transplant centers in my closest city other than my own, one is rated one of America's top 50 hospitals which is better than where I am currently listed which is only one of the top 100 and not high at all in Nephrology.  And when I called a *real person* answered the phone, not a menu of options!! .  She said the transplant coordinator was in meetings but put me through to her voice mail and I left a message.  I chose to call this one rather than the other because although it has done as many kidney transplants as the teaching hospital I am currently listed at this year it is not a teaching hospital.  I am thinking I may get better and more personalized care at a non-teaching hospital due to past experiences.  It is also much easier to drive to than the teaching hospital and closer to me.  So I feel as if I have made a little progress and done "something".  I am now going to do as a good friend suggested and start putting together a folder for myself of my medical history that I can keep with me and have in case I can't remember something in an appointment.  I am going to track down dates of infections that were treated, finally write out the long list of drugs I am not supposed to take, etc. 

Suzanne, in center hemo in past and again in 2 weeks, iatrogenic kidney failure, in the Southeastern portion of the U.S.

[KATIEJAYNE2003]

WELCOME, IM NEW TO IHD ALSO, I FOUND IT SO USEFUL ALREADY

COME BACK SOON
KATIE X

[Rerun]

Welcome Suzanne.  Until you said southeastern part of U.S. I could have sworn you were in Sacramento!!  You need to take care of number 1!!  Keep questioning them and keep searching for a comfortable transplant center.  It is hard to weed out the idiots because there are so many of them.  Hang in there. 

Do you have a fistula or a graft?                   

[SuzanneFord]

I have a fistula that has never been used.  I had a fistula put in about 3 weeks before I started dialysis the first time in '06 that "worked" as in pumped fine but always caused great pain.  It was actually supposed to be a graft but I woke up from surgery with a fistula in a different place on my arm and it hurt from the beginning even when not in use.  No one at the dialysis center (same as my transplant center) would take the pain seriously.  I switched centers and got a permacath in Sept. of that year.  Another surgeon tried to fix this fistula after discovering it had been placed over an existing fistula caused by a PIC line years before in the same hospital as did the wrong surgery.  The fix didn't take so I got yet another fistula in the same arm in the summer of 2007 that has a great thrill but has never been used.  I started out with a fistula at  my wrist that never took at all.  I hope this one works, everyone says it's great, I'll find out soon enough! 

Suzanne, in center hemo in past and again in a few weeks, iatrogenic kidney failure, Southeastern part of the U.S.

[annabanana]

  from a fellow-Southeasterner

[paris]

Welcome Suzanne, we are very glad you joined this great site.  First, they need to re-test your PRA.  It will make all the difference in getting a transplant. There shouldn't be this big of a mess up.  I am sorry you are going through this.  You took a good step by calling the other transplant center.  Sounds like you are on top of things and that is great.  Looking forward to hearing more from  you and how things are going.   






Paris,moderator     Also in the Southeast!

[SuzanneFord]

My transplant center won't retest until their next scheduled time--my neph found out they only test every quarter even though they require a blood sample from us every month.  That wouldn't be until a month from now and I also don't really trust their lab at this point.  I did not hear back from the other transplant center today but I hope they were just really busy.  I also wish my neph would call back himself but I think after talking to his nurse today that either she isn't giving him messages or he isn't going to call back.  His nurse has worked for him for years but she isn't a nephrologist and she too often gives advice as if she were which has messed me up in the past when I listened to it so now I am polite but ignore her advice.  She tried to tell me no transplant centers give PRA results to patients but I know that is not true.  If no centers give out PRA numbers to patients, how could folks be undergoing treatment to lower their PRA's?  It doesn't make sense.  I wish I had a way to know what the real result is.  Does anyone know if 34 is really high?  That is the only number the coordinator gave me on Thursday but I thought there were 2 numbers.  When they had wrong results before it was 50 something and 30 something but that went back down to 0 and 5 on retest which they did themselves that time.  (A few years ago.)  It is true that infections can cause transitory high PRA's isn't it?  That's what my neph. said then.  I wish he would advocate for me with my transplant center.

[okarol]

I get copies of every lab Jenna has had. I have a notebook full and I make sure that the doctor who orders labs understands that I expect a copy faxed to us each time. It takes awhile to retrain these medical professionals, but don't ever agree to a test that you are not privy to the results. Just my 2 cents! 

[Wayne]

   Hope you can't get everything worked out.

[Wayne]

Oops......meant "can" get everything worked out!