transplant : about to give up hope

[okarol]

Just as additional info: Lori Hartwell was able to get 4 transplants (2 were in childhood and never worked.) The 3rd was a marginal kidney when she was about 24 years old, 6/6 match, the creatinine was never ideal, but it lasted her 20 years. The 4th was possible because she had treatments to desensitize her blood due to a PRA of 100% and she would have waited years, maybe never getting a transplant. She went to Cedars Sinai in Los Angeles and after many treatments was able to adequately match her step-sisters tissue, who was her donor. In between the transplants she did 13 years of dialysis. It hasn't been easy but she has an optimistic view of life, and has taken advantage of every chance she could to keep going.

[mcclane]

update : my aunt emailed me informing that the cross match came back positive, plus they detected hep b on her as well, so that is a double whammy.

oh well, i guess it is back to waiting for the call.

[MooseMom]

update : my aunt emailed me informing that the cross match came back positive, plus they detected hep b on her as well, so that is a double whammy.

oh well, i guess it is back to waiting for the call.

Oh, that is just devastating news, it really is.  I know how much you were counting on either your mom or your aunt being able to donate.  I wish I knew what to say to make you feel better, but I would be a hypocrite because I'm waiting for "the call", too, and I'd be distraught.

I'm so sorry, but I will also say not to give up hope.  It's about all we have...

[mcclane]

update : my aunt emailed me informing that the cross match came back positive, plus they detected hep b on her as well, so that is a double whammy.

oh well, i guess it is back to waiting for the call.

Oh, that is just devastating news, it really is.  I know how much you were counting on either your mom or your aunt being able to donate.  I wish I knew what to say to make you feel better, but I would be a hypocrite because I'm waiting for "the call", too, and I'd be distraught.

I'm so sorry, but I will also say not to give up hope.  It's about all we have...

I am at a loss for words, worst part is, I'm still at work so it is really tough to remain focused on work.

Oh well, I guess I'll keep on doing dialysis and keep the thought of 'the call' out of my mind.  If it happens, it happens.  Going to try to make the most of it right now and try to remain positive.  But I tell ya, it sure takes the wind out of the sails.

[MooseMom]

I hate to ask this as it can sorta set you up for more disappointment, but do you think there is anyone at work who might at least consider being tested to be a donor for you? (Apologies if you have already talked about this in an earlier post.)

[mcclane]

I hate to ask this as it can sorta set you up for more disappointment, but do you think there is anyone at work who might at least consider being tested to be a donor for you? (Apologies if you have already talked about this in an earlier post.)

The thought did cross my mind, but I wouldn't know how to bring up the subject or even begin that discussion. 

[MooseMom]

The thought did cross my mind, but I wouldn't know how to bring up the subject or even begin that discussion.

I can only tell you what I did, and maybe that can start you on the road to an idea you could implement.

My husband works for the city, and they have an electronic bulletin board that all city employees have access to.  He and I drafted a notice for the bulletin board; we simply wrote that I needed a kidney, that the waitlist was 5 years long in our area, that I have type A blood and that my husband does not...you know, just the facts, m'am.  We asked if anyone would be willing to be tested to be a live donor.  We didn't go into any sob story or try to emotionally manipulate anyone.  My husband got it cleared by the HR department, and on the board it went along with the notices selling old furniture and such, lol.

The electronic bulletin board is always up, so anyone can come across our message at any time.  You never know which city employee my husband may have helped in the past who might like to return the favor.  So maybe something simple but indirect could be implemented at your workplace.

Do people at work know about your situation? 

[mcclane]

The thought did cross my mind, but I wouldn't know how to bring up the subject or even begin that discussion.

I can only tell you what I did, and maybe that can start you on the road to an idea you could implement.

My husband works for the city, and they have an electronic bulletin board that all city employees have access to.  He and I drafted a notice for the bulletin board; we simply wrote that I needed a kidney, that the waitlist was 5 years long in our area, that I have type A blood and that my husband does not...you know, just the facts, m'am.  We asked if anyone would be willing to be tested to be a live donor.  We didn't go into any sob story or try to emotionally manipulate anyone.  My husband got it cleared by the HR department, and on the board it went along with the notices selling old furniture and such, lol.

The electronic bulletin board is always up, so anyone can come across our message at any time.  You never know which city employee my husband may have helped in the past who might like to return the favor.  So maybe something simple but indirect could be implemented at your workplace.

Do people at work know about your situation?

only a few, my boss (she has to know why I'm constantly taking doctor's appointments), university's staff wellness centre, and a close coworker.  Other than that, I don't feel comfortable talking about my medical situation with too many people.

But what you mentioned about the electronic bulletin, our dept routinely sends out a 'what's happening', i may see about doing that.  Doesn't hurt.

BTW, you mentioned your blood type was A, mine is A+.

Out of all this, if there is anything positive, i may have indirectly saved 2 lives.  My mom, she didn't know about her elevated blood sugar level until the workup for the transplant.  So it was caught in time so save her from being diabetic.  My aunt, she had no idea she had hep b, hopefully it was detected in time so something can be done about it.

[MooseMom]

BTW, you mentioned your blood type was A, mine is A+.

Out of all this, if there is anything positive, i may have indirectly saved 2 lives.  My mom, she didn't know about her elevated blood sugar level until the workup for the transplant.  So it was caught in time so save her from being diabetic.  My aunt, she had no idea she had hep b, hopefully it was detected in time so something can be done about it.

Actually, mine is A+, too...it's top of the class. haha

I was going to mention how all of this has probably resulted in life-saving of other sorts, but I didn't want to sound too Pollyanna-ish.

Maybe I'm just a bit weird, but given the opportunity, I tell anyone and everyone that I'm on the kidney transplant list because, and this is the weird part, it just sounds so cool and dramatic!  lol  Seriously, just the idea that this type of surgery can be done...that people can be transplanted at all....is truly incredible.  If I step back and take myself out of the equation, I am left with the fact that it is miraculous.  And to think that a kidney can be extracted from a donor laproscopically is phenomenal. 

So, when my neighbors ask me how I'm doing, by God, I tell them!  I've told them about the long waiting list, about the procedure, about all sorts of stuff kidney related, and I just leave them to have a think.  Who knows...maybe one day over a beer or two, they might talk to each other about getting tested.  I never felt "less than" or "inadequate" or shamed by my fsgs.  I'd bet you'd be shocked to discover how many of your co-workers have some equally awful malady or circumstance going on in their own lives.  Anytime I mention my kidneys, it's like the floodgates open, and all kinds of people spill their guts. 

Anyway, maybe start with your company's "What's Happening" thingey.  I wouldn't be real surprised if you learned that other co-workers have kidney problems, too.  I'll be really interested in hearing what you choose to do next.  There may be someone out there who has always wanted to be a hero, and here would be their chance.




Edited: Fixed quote tag error - okarol/admin

[mcclane]

BTW, you mentioned your blood type was A, mine is A+.

Out of all this, if there is anything positive, i may have indirectly saved 2 lives.  My mom, she didn't know about her elevated blood sugar level until the workup for the transplant.  So it was caught in time so save her from being diabetic.  My aunt, she had no idea she had hep b, hopefully it was detected in time so something can be done about it.

Actually, mine is A+, too...it's top of the class. haha

I was going to mention how all of this has probably resulted in life-saving of other sorts, but I didn't want to sound too Pollyanna-ish.

Maybe I'm just a bit weird, but given the opportunity, I tell anyone and everyone that I'm on the kidney transplant list because, and this is the weird part, it just sounds so cool and dramatic!  lol  Seriously, just the idea that this type of surgery can be done...that people can be transplanted at all....is truly incredible.  If I step back and take myself out of the equation, I am left with the fact that it is miraculous.  And to think that a kidney can be extracted from a donor laproscopically is phenomenal. 

So, when my neighbors ask me how I'm doing, by God, I tell them!  I've told them about the long waiting list, about the procedure, about all sorts of stuff kidney related, and I just leave them to have a think.  Who knows...maybe one day over a beer or two, they might talk to each other about getting tested.  I never felt "less than" or "inadequate" or shamed by my fsgs.  I'd bet you'd be shocked to discover how many of your co-workers have some equally awful malady or circumstance going on in their own lives.  Anytime I mention my kidneys, it's like the floodgates open, and all kinds of people spill their guts. 

Anyway, maybe start with your company's "What's Happening" thingey.  I wouldn't be real surprised if you learned that other co-workers have kidney problems, too.  I'll be really interested in hearing what you choose to do next.  There may be someone out there who has always wanted to be a hero, and here would be their chance.

thanks for your kind words of encouragement.  I've never been comfortable discussing my medical issues, but my wife has no problems telling people that i'm on dialysis and awaiting a transplant.  Maybe she has the same train of thought as you do, that perhaps by telling as many people as possible, one of them may just step up to the plate.



Edited: Fixed quote tag error - okarol/admin