It's been a long road and I am too tired to keep going.

[Punkybruister84]

My story is rather long and I'm not going to get into it all. The reason I'm posting is I'm tired. I was raised with what I thought were family values. My dad always told me. Friends come and go. But famiky is forever. Do right by your family. I was to be transplanted in  march of 2010. My dad died of a heart attack  dec 26th 2009. I still remember him telling me and my two siblings growing up just how important family is. My mom was going to be my donor.. until my dad died. My brother was asked to get tested. He was hesitent. But eventually did. He is a match as of 2011. My mom is no longer able to be a donor. The stress of losing my dad somehow effected her function and now she cant. My brother was asked to help me. He said " I'll get you next time." By 2012. I told him. I have no other options. Please help me. I'm on dialysis which is very painful and I'm on the road to losing the life I never even had an opportunity in having. My brother is 4 years older than I, and pretty healthy. He agreed to help we finished all the testing. But for the past 2 almost three years he has been screwing around about setting an actual date. I've been on dialysis for 2 years. I passed my stress test . Everything. First he told me in october of last year. Then it turned into december. Then he said Feb 2014. Then july. Then he said no , October would be better.  He messaged me last week saying he's thinking of early november. Now texts me today and says Dec 1st. I'm upset because I've flat out told him. If you were in my shoes I wouldn't think twice before helping you. I would just do it because you are my brother and I love you. But him. I can't count on him. I'm exhausted. I can't even feel hopeful anymore. Only in the past 6 months has the 1 hospital I'm listed at called about possible donors one being a teenager who would have met a 3 out of 6 criteria. I took the offer. But in the end it went to someone else.  And 3 weeks ago another who was a 1 out of 6 match with hepatitis and possibly HIV positive. The hospital claims they don't even use this 1-6 rating system anymore. Claiming it doesn't matter. If you're a 1 or 5 match the medications stay the same. It's only if you are a perfect match that would make a difference. That sounds like total bs to me. To me I'd think a match of 3 or better is what I'd want. I would think the closer you are in a match. The better the outcome. But the hospital is trying to tell me otherwise. Anyone else ever told this?

[jeannea]

When I got my first transplant from my mom, they told me she was 4 out of 6. I think I was supposed to use that to decide if I wanted her kidney or wait for a better chance. That was 16 years ago. My most recent transplant I was on the list. I got a couple of calls with high risk donors. Suicide, prostitute, etc. I turned those down. I finally got a match. At no time did they give me the HLA match. I was told my donor was under 60 years old and no kidney problems or other health concerns I needed to know about. That's it.

I think you should try to think about your brother as not matching. He doesn't seem to want to. If you force him to go back to your transplant center, they will realize it and tell you he can't be a donor. Do you even know if he's a match? In the end he might not be. All testing would have to be repeated after that much time.  Try your best to look forward. Let the list work for you. Wait for your match to come. My brother won't even mention transplant around me. He would never do that for me.

A therapist can be very helpful. Someone to rant to when you are frustrated.

[Deanne]

You've had several difficult years. You're getting the calls though, so maybe your time on the list is getting short. I don't think my hospital uses the 1-6 system, either. I asked what my match is and they told me that not all antigens are created equally. My match was only 1 or 2, but they told me it's an excellent match because the one that really counts is a match. They told me the others aren't critical. I'm only 7 months out from transplant, but I've had zero signs of rejection so far and I don't really worry about the number of matching antigens anymore.

I agree that you shouldn't consider your brother as a donor. Some people just can't do it. It doesn't mean he doesn't care about you.

[SooMK]

My hospital didn't give me a scale of a match for my donor. I don't know if they use it or not and I never asked. I was just told that she was a match. I agree that your brother is unlikely to be approved if he is so reluctant. It would be good to know what was behind his procrastination. Perhaps he feels he hasn't actually offered, that he is being pressured into it. If he's frightened, which is understandable, talking with other donors might allay those fears. I wish you all the best.

[Michael Murphy]

The one piece of advise I could give you is take it one week at a time.  Three sessions of Dialysis per week.  I don't worry about the rest of my life that would be too over whelming I think of each week as a journey onto itself.  I then focus on making it to Friday when I will loudly announce that I won't be coming back to dialysis any more this WEEK.  It make me feel as if I had accomplished my goal of getting through the three treatments. Next week treatments are next week problem, and I have finished Dialysis for the week.  I am not transplant eligible so I will be doing this as long as I live.  That concept is over whelming to me.  So I deal one week at a time. Today is Wednesday so as I right this I only have one more treatment this week.  By the way the first time I announced that I was not coming to any more dialysis sessions this week the nurse treating me began to explain that I had to come back.  I told her I would not be back this week.  She continued to explain how important dialysis was when she suddenly realized it was Friday and I did not have to come back.  She was torn between being indignant and a fit of laughter.  The old bon mot of the journey of a thousand miles begin with the first step contains a basic truth breaking the task into small steps makes it easier to deal with mentally.  By the way don't be too tough on your brother he probably is terrorized by the thoughts of having a kidney removed.  Not everyone has the courage to do what is right.

[okarol]

I am sure your brother doesn't realize that at some point you may become too unhealthy to transplant. And he probably sees that you're getting by on dialysis just fine (yeah, right!)
Maybe he hopes you'll get the call for a deceased donor kidney before he has to donate.
Bottom line, he's not a willing donor.
They used to look at antigens, now they look at antibody compatibility. It's not a perfect science.
Can you use what energy you have and try to find a living donor who is willing to donate or enter a swap for you, if necessary?
We have had good luck on facebook and craigslist. The potential donors call the transplant team directly, so there's not all the angst for Jenna.
If I can help you campaign for a donor let me know. You can enlist your family and friends to advocate for you.
I am sorry it's been so tough. Your mom should still help you, but that's just me. I cannot imagine Jenna doing all this on her own.
 

[LisaBart]

I would think maybe your brother is living with guilt for not helping you In saying that I had intended to be tested to see if I matched my partner, and had spoken of donating my kidney,
but it worried me if something happened to me, my son might lose us both He has 6 siblings, not one has come forward with an offer of help, yet they all used to be so close.
Our son, now 14 said he would be tested, bless him.
Alan has only been on dialysis for 3 weeks, it's a big life change and I can't imagine what you have managed to go through for all your time.
Sadly, I would also say forget your brother as a donor. It's a big deal to donate an organ even if you do love someone, it doesn't mean he loves you any less.

[kristina]

Perhaps it is a question of collecting as much information as possible through the Internet for anyone to become an informed donor ?
Perhaps your brother has not received enough information about kidney transplants on the Internet and is hesitant because of it ?
I have no genetic family at all, so I can't really speak about or even share your feelings about genetic family values...
... i.e. I can't speak about a brother or sister or genetic parents as a kidney donor etc. because I have no genetic family...

But I mention this point about information about transplant, because my husband has recently offered - out of the blue -  to be my kidney donor
and he told me that he had already found lots of information about kidney donation on the Internet...
... He told me, that some of these kidney-transplant stories he has read were negative, but most of them explained very positive, "matter of fact" experiences ...
... and my husband concluded from all this given information, that the two of us should "give it a go" and get tested as soon as possible  ...
I am still pre-dialysis and we have both been tested, but because of our different (incompatible) blood groups, I can't have a kidney donation directly from my husband,
but my husband had made up his mind beforehand and wants to go ahead all the same, by taking part in “pooling”...
... "Pooling" means, that I can receive a more compatible kidney donation from another living donor who takes part "in the pooling",
whilst my husband donates one of his kidneys into the "pooling" exchange and another recipient receives one of my husband's kidneys in a more compatible exchange ...

I have never asked my husband or anyone else, to "get tested" and I have never asked anyone to donate one of their kidneys to me,
not only, because I still hope every day, that my "two little fighters" continue their brave fight much longer...
... or that they might even "come back" and continue their function again... as they did (without any dialysis) in 1971, after they had failed for the very first time...
... but I am also convinced, that it would be unfair for me to ask anyone to donate one of their kidneys to me, if my own kidneys fail to function on their own...
... I feel, this is a very sensitive and very personal issue...  and I personally would not even have the nerve to ask anyone for a kidney donation...
...  but my husband thought it might be a good idea to become fully prepared all the same and, without telling me at the time,
he found lots of useful information through the Internet and he made up his mind in his own time
and has decided to assist me with one of his kidneys in a kidney donation...

... I mention this, because I never thought it would be a good idea to pressurize anyone about becoming a kidney donor...

... Perhaps the hospital have noticed your desperation to receive a transplant and/or at the same time
 they might have noticed your brother's hesitation about giving you a kidney transplant...
... and perhaps the hospital staff try to give you a gentle "hint" to look for other treatment or transplant ways...?

[Rerun]

I have 3 living siblings and none of them have offered over the last 30 years.  They have kids of their own, so I hope they are being cautious in case what I have is hereditary. Does your brother have children?  You are getting called.  It won't be long.  If I were you I'd still reject the undesirable kidneys offered to  you.  Get a good one.  Hang in there.  Your day is coming.  Your second chance at life is coming.  Being a donor is a risk... so you don't want to be beholden to your brother forever either. 

Hang on!                       

[Charlie B53]

Michael Murphy has made a great posting.  A great positive attitude can help ease a lot of stress while waiting.

Vent all you need, we are all here to lend our ears and shoulders for you to use when you need.

NEVER give in and give up hope.  Your kidney is out there, and will become available when the time is right.  Sadly it is not up to us to make that time happen right now.  Patience is difficult, but rewarding.

Re-read Murphy's posting, take your time and let his attitude sink in.  It WILL help you cope with the wait.

Use us as you feel you need.  Hopefully it will help just to vent those frustrations and let you clear your head and let more positive feeling in.

Take Care,

Charlie B

[kristina]

I have 3 living siblings and none of them have offered over the last 30 years.  They have kids of their own, so I hope they are being cautious in case what I have is hereditary. Does your brother have children?  You are getting called.  It won't be long.  If I were you I'd still reject the undesirable kidneys offered to  you.  Get a good one.  Hang in there.  Your day is coming.  Your second chance at life is coming.  Being a donor is a risk... so you don't want to be beholden to your brother forever either. 

Hang on!                       

Hello Rerun, could you please elaborate about the risks of being a kidney donor?
I am aware that being a donor could present itself as a risk if there is a problem with hypertension, age or overweight...
but I am not aware of any other risks involved ...  am I wrong ? I am also aware that there are risks involved for the transplant recipient,
if their health has suffered over the years, or if they are hypertensive, or if they are overweight... or their age... I am not aware of other risks...
Are there any other risks involved and I am not aware of them ?
Could it be that Punkybruisters brother knows more about possible "hiccups" in kidney transplants and I am not yet aware of these facts ?
I am aware that the medication after a transplant can cause severe problems with drug-intolerance for the recipient...

Thanks from Kristina.

[Wat76]

Please be patient and try to deal with your current situation. It is so hard doing dialysis daily, no matter what form of D is used.  You have to keep going , your time will come for transplant.  Don't be too hard on your brother, it is difficult for us that needs a kidney, just imagine how someone feels who is pressured to give a kidney.  Hang in there, all will work for you.

[natnnnat]

Hello Rerun, could you please elaborate about the risks of being a kidney donor?
I am aware that being a donor could present itself as a risk if there is a problem with hypertension, age or overweight...
but I am not aware of any other risks involved ... 

I guess there's the general risk of all surgery.  Any surgery has a potential risk of complications including, you know, death.

[okarol]

Some of the risks are listed on the webpage http://www.livingdonorsonline.org/kidney/kidney5.htm

[kristina]

Thank you very much for the helpful information natnnnat and okarol,
it is very much appreciated, because I would not want my husband
to take too much of a risk on my account... it wouldn't be fair.

Thanks again for your kind help, Kristina.

[Punkybruister84]

Thank you for all your help guys .. I am sure he's scared. He keeps saying he's worried about money because his recovery time is 4-6 weeks and he doesn't have enough sick days or vacation time to cover it.  But he's been reassured by Myers of our family that they will compensate him financially for lost wages.
I think he's more scared than anything else. Because the idea of it being a money issue to him is new. I understand he's scared. But I told him, I would never ask him to go through this if he would get sick or hurt by doing it. And so far Penn thinks he's good to go. He picked dec 2nd this time.. so, we'll see. I'm just kind of frustrated because I wanted him to want to care. I don't want him doing this if he feels pressured. He told me last year he won't let me die. But yesterday he said he called pen. With a date. But said again if something else comes up take it. So no he's not too stoked about it. And I don't want him to continue if it's so much of an issue. He's a 4-6 match. And alive lol so that's already better than a donor that I'd get through penn. But like I said I don't want him to do it if he really doesn't want to... I just really wish he wanted to.

[okarol]

Thank you for all your help guys .. I am sure he's scared. He keeps saying he's worried about money because his recovery time is 4-6 weeks and he doesn't have enough sick days or vacation time to cover it.  But he's been reassured by Myers of our family that they will compensate him financially for lost wages.
I think he's more scared than anything else. Because the idea of it being a money issue to him is new. I understand he's scared. But I told him, I would never ask him to go through this if he would get sick or hurt by doing it. And so far Penn thinks he's good to go. He picked dec 2nd this time.. so, we'll see. I'm just kind of frustrated because I wanted him to want to care. I don't want him doing this if he feels pressured. He told me last year he won't let me die. But yesterday he said he called pen. With a date. But said again if something else comes up take it. So no he's not too stoked about it. And I don't want him to continue if it's so much of an issue. He's a 4-6 match. And alive lol so that's already better than a donor that I'd get through penn. But like I said I don't want him to do it if he really doesn't want to... I just really wish he wanted to.

If you can't help him cover his lost wages you can ask your center to apply for assistance for this. They look at both your incomes - and they approve a large percentage of those people who apply.
NATIONAL LIVING DONOR ASSISTANCE CENTER - Try the online eligibility tool to see if you qualify https://www.livingdonorassistance.org/
Good luck!