Newbie

[Cheryl]

I am 49 years old and have been on dialysis for about a year and a half.  I had a kidney transplant 32 years ago from my mother that recently failed (obviously).  I have been worked up for another transplant from my husband and in fact our surgery has been scheduled for April 19.  I am in what is called a positive match program at the Mayo Clinic which helps people who have had a previous transplant or sensitized in some other way to transplantation.  Obviously I had many years with my transplanted kidney and am a proponent of transplantation and would encourage this path for those of you who have that option.  Strides are being made everyday in that area, medications are getting better and better.  I realize transplantation is just another treatment, not a cure but in my experience beats the heck out of dialysis!  Anyway I was wondering if there was interest in having a place on this board for kidney transplant patients as well??  It would be nice to be able to share trials and tribulations of transplant and I don't find a site for that. 

Thanks for listening!!

[Epoman]

I am 49 years old and have been on dialysis for about a year and a half.  I had a kidney transplant 32 years ago from my mother that recently failed (obviously).  I have been worked up for another transplant from my husband and in fact our surgery has been scheduled for April 19.  I am in what is called a positive match program at the Mayo Clinic which helps people who have had a previous transplant or sensitized in some other way to transplantation.  Obviously I had many years with my transplanted kidney and am a proponent of transplantation and would encourage this path for those of you who have that option.  Strides are being made everyday in that area, medications are getting better and better.  I realize transplantation is just another treatment, not a cure but in my experience beats the heck out of dialysis!  Anyway I was wondering if there was interest in having a place on this board for kidney transplant patients as well??  It would be nice to be able to share trials and tribulations of transplant and I don't find a site for that. 

Thanks for listening!!

Hello Cheryl, welcome to the site. about your question: "I was wondering if there was interest in having a place on this board for kidney transplant patients as well??" of course!!! their are many people on this site that have had transplants. Feel free to make a new post talking all you want about your transplant trials and tribulations (place it in the "General Discussion" section). If enough people want a dedicated section for "Transplant Experiences" I will consider adding a new section. Again welcome.

- Epoman
Owner/Admin

[Rerun]

Hi Cheryl,

I swear I was JUST thinking about that today.  We need a section for Transplant Patients to vent their frustrations.  It is a whole different ball game.  Transplantion is just another form of dialysis and there are things I "hated" about it too.  But, like Epoman said, there would have to be more then the two of us in order to make a whole new section.

I had my transplant for 17 years and it just gave up in September.  I just found out my PRA (Panel Reactive Antigens) are 93.  So, I'd be interrested in hearing about the program you are in.  I keep saying, I'd rather have my transplant 17 years and have the antigens screwed up than to have 3 transplants that didn't last. 

By the way..... welcome to the site.  I'm sorry about you losing your transplant, but you had a hell of a run!!!  32 YEARS Wow!! 
Bless your Spouse for offering his to you.      I'm looking forward to your posts.

[Cheryl]

Rerun, to answer your question, at the Mayo Clinic they have a program called "positive crossmatch" where people with high antibodies because of previous transplant can have what they call plasmapheresis treatments.  The process is similar to dialysis in that blood is taken through some sort of access and the plasma is separated out and replaced with donor plasma or some other fluid and returned to you.  This is done until you and the donor no longer have a positive crossmatch.  So if you have someone who is interested in being a donor it would be something to check into.  I think you and your donor have to be relatively healthy, other that the obvious!     Anyway, look on the website for the Mayo Clinic, positive kidney transplant for more information.  This is sort of my rudimentary understanding of the process.  I guess they also have programs where people who don't even have the same blood type can be transplanted too.

Thanks for your post, I look forward to more I will have a lot of time on my hands since I will have to stay in Rochester for about a month after surgery.

[Black]

... I guess they also have programs where people who don't even have the same blood type can be transplanted too...

I read somewhere that Johns Hopkins is also participating in that program.

[Rerun]

San Francisco too and that is closer to me.  Thanks~

[Naggy6]

I too would be interested in hearing peoples transplant stories.

I have had three and hope to have another one. I have also done plasma pheresis, I was unaware that it could be used for the purpose of bettering the chance of a match. My PRA was very low even after my first two transplants how ever after the third transplant it has jumped up to 50.

I did plasma pheresis to try and stop or maybe at least slow down the progretion of my kidney desease (fsgs). It has helped some people but did not work for me.

People often ask me hows dialysis, I just tell them it sucks but it sure beats the alternative.

[Rerun]

Naggy6 the new section is started.  Please post your story there and tell us more about your three transplants.

Thanks~

[Naggy6]

OK I will go there, I wasn't aware that it was there as I just started checking out the site and haven't seen every thing yet.

So far I really like this site. I don't really have any thing to compare it with but I know I like it any way.  Every one seems to be nice here.