am I havng a mini meltdown?

[lou]

Well I have just come off the phone to my mum after crying my eyes out to her and now feel really bad that shes upset too.

Basically I think I'm having a really bad day. Sorry if I bore anyone with this, I think its gonna be long, you can switch off if you want!

I'm from a really close family and when I found out about this kidney stuff my mum, dad and brother all wanted to donate. My dad was a different blood group though and the doctor wouldn't let my mum do it. My brother was a really bad match and because I'm young (29) they told me I would be better to wait on the list and try to get a better match.

Last year I went on the list and I started dialysis 3 weeks ago. Earlier in the year my aunt offered to donate. I was so excited because they found she was a good match. Well basically she then had a bad reaction to the first test in hospital and then she changed her mind. At the time I was completely gutted but I rang her and said I understood and it was a big thing to ask and I didn't want it to ever be awkward between us.

Well I guess now I'm having a bad day and I cant help feeling really angry towards her. I know its not healthy but I cant help thinking why did she back out on me? I thought we were really close and my mum and her are really close and I know my mum feels really upset with her but they are still fine.

My mum and dad have got back from staying with them for the weekend and mum said she kept asking after me, but that just made me feel annoyed. I feel like she has abandoned me. She hasn't rung me since to ask how dialysis is going and I know she probably feels awkward.

I keep thinking about my brother who has a little girl, aged 2. I know its easy to say this, but I really believe I would do anything to help her if I could. My aunt in 63 and been healthy all her life. I feel sure if I were able to help my niece I would.

Maybe someone will read this and think I sound like an angry, spoilt brat or something and I really don't mean to I just feel really upset. Do you think I am being unfair? I know I am having a bad day today as I had a long day at work and I'm tired so that probably doesn't help.

Anyway sorry this is so long. Hope everyone else is having a better day!

Louise xxx

[cariad]

I'm sorry things are so rough right now, Louise. I can understand why you are hurt about your aunt. I am assuming that the "bad reaction" you mention was a purely emotional reaction and not something medical? Unfortunately, some people really cannot handle these procedures, much as we secretly wish they would just get over the fears or whatever is holding them back. If she tried to just grit her teeth and get through the testing, chances are she would be weeded out by the transplant team anyway. If she (hypothetically speaking) has a panic attack during an EKG, she probably won't be very composed for her psychological interview.

I am curious about your brother not being a good match, and that they think you are better off on the list.    Living donors are almost always preferrable to cadaver. My husband and I are a 2/6 match. I asked a transplant nephrologist if I should get on the list and wait for a better match, and he said no, a thousand times no. Maybe I am missing something here, but from what you wrote, I would suggest investigating having your brother donate further. Even a 0/6 match can work these days.

I hope you can ride out the bad day, and feel much better tomorrow.   

[lou]

Thanks for you reply.

My brother is a 1/6 match. The reason they said to wait is that as im young and would need at least another transplant in the future, if his kidney failed finding another kidney would be extremely hard. Do you think that's true?

[willowtreewren]

Lou,
I'm sorry you are going through a bad patch. I tried mightily to donate to my husband and even though I love him dearly, I went through a spell of dreading the surgery. As it turned out I could not donate anyway. And just last week we had another live donor have second thoughts. Please don't be too hard on your aunt. We never REALLY know how we will react to situations until we are truly in them.

The issue with being young and getting a 1/6 match has to do with your PRA. The higher it is the less chance of finding a suitable donor. Your PRA increases with each transplant. Yes, a 1/6 live donor match is better than a 6/6 cadaver match, but I'm thinking that your transplant team may be holding out for a better live donor match.

Listen to your transplant team, but if you have questions, be sure to ask them. Knowledge truly is power.

Best wishes,

Aleta

[okarol]

Not to put down your aunt's offer, but I think at your age you'd do better with a younger kidney. And if she is not able, for whatever reason, to go through with it, then you have to try and let it go.

Are you multi-listed? (sorry I am not sure where you're located.) Does your hospital accept altruistic (stranger) donors? If so then you can reach out to find a donor.

Taking more control over your situation may help you broaden your horizon's. You never know where your miracle will come from. This might be helpful http://ihatedialysis.com/forum/index.php?topic=13917.0

[cariad]

Thanks for you reply.

My brother is a 1/6 match. The reason they said to wait is that as im young and would need at least another transplant in the future, if his kidney failed finding another kidney would be extremely hard. Do you think that's true?

No, I don't think that's necessarily true for a couple of reasons. PRA is highly unpredictable. There are people who have had transplants and children and transfusions who have a PRA at zero (I was one of those, for most of my life), and then there are people who get one transplant or one blood transfusion and their PRA skyrockets. The doctors cannot tell you which group you are going to be in. You could get a transplant and have it last the rest of your natural life, or it could fail within weeks of the surgery. Again, doctors cannot predict the outcome for any individual.

I was 33 when that doctor told me to take my husband's kidney over a cadaver. I would worry that you could be 33 or older by the time you get a kidney off the list. Can I ask what country you are in? (I'm in the US.) Dialysis can be really hard on your body, which can make you a less ideal candidate for transplant over time.

You need to do what's right for you, and I am not trying to push you in one direction or the other. The advice you are receiving contradicts the advice I have received over the years, so I am wondering why that might be. Do you have AB blood? If so, then your wait on the list could be very short, and that might be a consideration. Your doctors should really be telling you their reasoning, not just urging you to blindly spend your precious time on dialysis now, trying to prepare for a future issue that you may never actually face.

Best of luck. Thinking of you, and hoping your day is improving.   

[lou]

Thanks for all your comments. I'm from England and the wait on the list here is 2-3 years on average. Its all so confusing as different people say different things. My renal doc said I should stay on the list but if I'm still on it in a year to start thinking about my brother again.

To be honest I think I'm still slightly in denial that Ive actually started dialysis. I keep thinking I'm going to get that call any day now - i don't know if thats just me being Marjory positive or just a bit deluded! The doctors keep telling me that as I'm young i hopefully wont have such a long wait as although the best match is the main factor, age is considered as well. I wish someone would just tell me what is best but i guess kidney disease just isn't that simple is it?

Anyway thanks again for the replies. Have calmed down a bit now and just about to make cup of tea and put film on (now you can prob def tell I'm from england - we always have a cup of tea in a crisis - not sure why but its the first thing anyone says when your upset!! Is it like that in USA?)

lots of love

Louise x x

[okarol]

Hi Louise,
Ok now I see you're in the UK so things may be different for you than it is here in the US. My 23 year old daughter had a donor give her a 2/6 kidney 2 years ago and she's doing great. As has been mentioned, they cannot predict which patients will develop antibodies more than another - so that comment is confusing to me.

[RichardMEL]

Louise - *hugs* that's really tough about your brother and aunt (for different reasons).

both my brother and sister were denied on medical grounds, so I can relate to that issue... as for my aunt or uncle or nephews - half of whom are medical professionals - well none of them have ever offered to be tested or shown any interest - that's how close that family relationship is (but I'm not bitter given it kind of goes both ways). Of course my uncle works in the same freakin hospital (irony - he does live donor transplants) and he's never come down the few floors to visit me while I've been on Dialysis... but I digress...

As others have said your aunt is 63 and that may well relate somewhat to her bad reaction to the test she had. One of the things that was drummed into me when my siblings were being tested is that it is absolutely their choice to change their mind right up to the moment of the donation itself. That's one of the reasons units often draw out testing because it IS such a big decision to make you don't want to rush into anything.

It's very distressing for someone to offer then pull out (for whatever reason) because you would feel betrayed but this could well be a blessing in disguise. She is older and that could well bear on things down the track - for both of you.

I also agree that it might be better to wait to get a better match for you. If you need another transplant down the track (and sadly the averages are that you probably would) a higher match means its likely you'd get more "life" out of the kidney over a lesser match(like your brother). The antibodies could definitely rise after a first transplant which would make a second harder (but not impossible). I think that is good advice.

Down here the wait time is 4-5 years. I've been waiting nearly 4. You've got what a bit over 1 year up, and on the averages may only have a year or 18 months to go. Before you know it that call will come through.

Try to not be angry at your aunt - it's not worth it to let that come between you I think.

Hoping you get your perfect match really soon!! 

[Hanify]

My experience is that my close family actually like me to melt down with them sometimes - cos it gives them the excuse to melt down too.  We can't always be sensible about all this and neither can they.  Sorry about your aunt - I can understand your anger, but it is  HUGE thing to donate a kidney, and it's easy to get scared.  You never know, she might think it through and go ahead.  Although I too wonder whether at your age you'd be better with a younger kidney.  This may end up being one of those situations that are for the best.  Doesn't help now though does it!  One day at a time honey, that's all we can do.

[RichardMEL]

My experience is that my close family actually like me to melt down with them sometimes - cos it gives them the excuse to melt down too.  We can't always be sensible about all this and neither can they.  Sorry about your aunt - I can understand your anger, but it is  HUGE thing to donate a kidney, and it's easy to get scared.  You never know, she might think it through and go ahead.  Although I too wonder whether at your age you'd be better with a younger kidney.  This may end up being one of those situations that are for the best.  Doesn't help now though does it!  One day at a time honey, that's all we can do.

Oh Hanify I thought you would only ever melt down in a hot pool!!!! 

Lou - you have to have faith that the right organ FOR YOU will come along when it's meant to. That's what keeps me going when I wonder where that phone call is.....

[Phraxis]

Glad to hear that you are feeling better. In our family too a cup of tea is the first course of action in solving most problems. (in Canada)

There are others that offer better advice than I but I suggest patience and understanding in dealing with folks that volunteer an organ and are declined or pull out. That does not mean you don't come here and rant recklessly, as I believe that this is just what this site exists for.

[Maker]

So sorry Lou    I can't relate...yet, but I'm sure some of these same feelings will come for me when I get more into the process of having potential donors tested. 

God's timing is always better than ours - something I have to remind myself of daily! 

Post and let us know how you are.  Hope the "mini meltdown" has passed and you are having brighter days 

[Jie]

As everyone said here, a 0/6 match living donor kidney lasts longer than a 6/6 deceased kidney. If the 1/6 match is with DR, it is still pretty good too. I don't expect to have any higher than 2/6, most likely 0/6 match. The current medicine is pretty good to deal with 0 match.  The freshness of the kidney tissues is much more important than the match. 

Everyone has a bad day from time to time. It is ok to cry for a while. 

[RichardMEL]

Interestingly my doc said to me recently that these days a 1 out of 6 match isn't as bad as it used to be because of the improvements in the medication and procedures.