Donor Evaluation: First Opinion good.. second opinion bad... what next?

[RichardMEL]

Amanda you hit it on the head with your comment about your mum/sister... See they(docs) consider I am in reasonable health (all the labs are reasonable.. one nurse told me today I was a model patient... don't know how they can claim that with high calcium and a rising PTH, but she said my phosphate at 1.07 was really good). Anyhoo... so they would prob. not consider my sister because of that...

In a way I feel kind of... well not sure how to express it.. but somehow it's like they'd prefer a cavader donor if I am ok health wise but possibly go for my sister if I'm going down the drain.. not too sure how to feel about that.

Anyway I guess all I *can* do is take it slow... though dialysis this week has been a real drag.. I just started thinking "how many years am I going to be stuck here?" and it got me down a bit.

[goofynina]

You would think that anyone who had a donor, especially one that matched, they would get them transplanted so they can get them OFF of dialysis A.S.A.P. but i guess that isnt always the case huh?  I thought the whole thing was to find donors that matched and get those patients out of there, boy, was i wrong (again) 

[RichardMEL]

Well yes it is, but if there's a concern for the donor (eg: the blood pressure) then they don't really want to create possibly 2 patients when there's one already. I guess the decision making process, or rather the pros and cons change if the intended recipient is in a bad shape and it looks like there's no other option for them.

I suppose doctors see it that if you're stable on dialysis that's OK medically and in no need to rush into anything. Easy for them to say they're not stuck on the damn machine! lol

[Wattle]

   Hang in there Richard. They are fussy with potential donors. You could always try RMH for a second opinion.

If you would rather not..... the phone will ring eventually   

[RichardMEL]

I think my brother might like to try RMH for a cross-match transplant (I think that's right?) but not sure how my sister might feel. I'd leave it up to them to decide if they want to keep pursuing this as it's really their decision rather than mine.

ty anyway Wattle... the phone might ring but somehow I feel like it won't be for ages.. trying to keep positive but it IS that much more difficult going to yet another session thinking how many hundreds more will I have to endure?

[Amanda From OZ]

Sorryto hear richard your having such a hard time..... i agree with wattle go for a second opinion...

hope all works out for u ... 

Amanda xxoo

[RichardMEL]

well we'll see.. but in the meantime I am so wrapped for everyone else that is on the way to something better - hopefully successful and long lasting transplants!!!!

Then you will ALL have to have beers (or whatever you like) for me to celebrate!

[Wattle]

Richard,
I just try to go day by day and not let the bigger picture creep into my head too much. Try to forget about the next session until its upon you. I have only been on dialysis for two years and I agree most of the time it does consume my thoughts. There are so many people here that can help with the daily grind of wiping it from your mind. Kitkaz is a perfect example... 8 long years and still has a wicked sense of humor!
Hang in there   

[kitkatz]

If I am a good example, God help you people!

[Wattle]

If I am a good example, God help you people!

  Your Funny   

[RichardMEL]

Time for another update folks:

Today we had the psych evaluation and also stopped by to see the Dialysis Co-Ordinator so my sister could meeet her etc.

Well not too much to say about the psych evaluation though we did feel the person doing it was a bit of a cold fish and a little odd - but I guess you have to be detacted in situations like that.. but we did mention our cats and she did laugh and warm a bit after that point. It was all pretty much as I expected it would be - asking how we feel about the situation... if the transplant goes through or not... a bit about our family history and each of us approaching this donor process etc. Went for about an hour which was longer than I expected but pretty thorough.

The end result really is that we know pretty much what we knew before - all the test results for my sister seem A-OK but they are concerned about a few things such as her (controlled) blood pressure and a couple of other medications she's on. These concerns seem pretty reasonable and I think that is what will kill this donation attempt to be quite frank. Having said that if there was even a WIFF that something bad could happen to my sister as a result of, or compounded by, me taking a kidney then I don't want to do that.

Anyway we finally have a date!!!

A date, that is, for the transplant evaluation meeting when they will all get together and decide if we continue on or the risks outweigh the benefit. Looks like that's June 6th... so in a week and a bit from now.

At least we should know one way or the other which will end a few months of frustration for my sister who has put a lot of things on hold waiting to hear what happens with all this.. so hopefully in a week or so she'll have a much better idea... so that is good!

So yeah that's all there is to update on at this point in time.

[tamara]

Thanks for the update Richard. One more week and you'll know either way which is good


Tamara xxx ooo 

[RichardMEL]

Just another thing I forgot to add...

I also got a clarification on the transplant list....

I had previously been told I'd been on the list for 3 years or so so I decided to ask the co-ordinator while I was with her the exact date. Of course it's not like first come first served etc so it doesn't REALLY matter but in terms of average waits and so on it gives some small measure of an idea where you stand.

So anyway turns out I first went on the list in August, 2003 - so that's nearly 4 years ago...

however

The date of becomming active on dialysis is the real date they use since according to the co-ordinator they weight selections on HLA matches then time on dialysis (which seems fair to me).. so thus I've only been on dialysis for 10 months so that's the figure that would be taken into account. Aparently here the average wait is 4 years so that suggests I wouldn't get a call anytime soon (assuming the donation doesn't happen).

I know that it's just averages and you need calls < 4 years as much as some > than 4 years to make that an average figure, but all things being equal I guess it means prob another 3 or so years at least I may have to wait...

Which kind of changed things for me that little bit since I was feeling like I would be hitting that "average" time soon and might have a chance of something soon.

ah well at least I have some idea about that and how it works so it was useful to ask.

[RichardMEL]

Well folks... this is it.

Today is D Day... yes it's June 6th (here in oz anyway)... so appropriate I guess.. but not only is it the anniversary of D-day as in World War II, but it's also my personal D day as the kidney donation assessment meeting is scheduled for later today where I am led to believe my sister's request to donate to me will be discussed and decisions made.

Frankly as I've indicated earlier I feel the donation will be turned down because of my sister's blood pressure. I'm 90% certain that will be the decision.. And yes that would be disappointing but at least my sister has tried and wanted to and I could not ask more of anyone... and I would NOT want a risk like that to potentially cause her problems down the track.. so if the doctors think it's too big a risk I'm willing to accept that because I'd rather one of us was in trouble rather than potentially two of us!

However there's always that slim chance they may say yes and we continue on.

Not sure when we'll hear something.. may be today or in a few days.. I hope it is sooner rather than later so at least my sister can get on with her life (which has been on hold these past 6 months or so while going through this process)... that in itself would be a positive.

I'll post more when I hear

[okarol]

Thanks for the update.
Take care!
Karol

[goofynina]

Richard, Good Luck and remember, no matter what the outcome, we are here and we love you 

[RichardMEL]

OK another update.. though not much of one (*frustrated sigh*):

My sister and I got fed up with waiting so my sister emailed the co-ordinator to ask what the deal was... she wrote back and said they had a "long discussion" at the transplant meeting about it (uh oh) and we should really see the neph about the issues.

Well you know this pissed me off. We are well AWARE of the issues... and if they are going to decline the donation because of the risks... fine.. but tell us.. don't make us wait around wondering just so you can sit there with us and say "Well you know we have these issues with X, Y and Z so we've decided to not proceed with this live donation" - puhlease! I'd rather be told that in email or phone than having to wait for an appt (and my neph is so busy it's not funny.. getting an appointment with him is like winning the lottery).

If however it means they feel there are risks we should be aware of, and should we want to proceed it's on our shoulders ("informed consent") then fine.. but I'd rather know one way or the other without eaiting.

So I wrote a bit of a direct email to all concerned (after discussing it with my sister of course!) saying basically that... Well no real response except that we do have an appointment with the neph next Thursday at 8:30am (amazing) so that was good of them to do that.

However I am still irritated that it took US to contact THEM to even get to this point. Why couldn't someone have contacted my sister on Wednesday when the meeting was to say "look there are issues we want to discuss with you. can you come in ASAP?"

A bit disappointing the way this has been handled.. and it is unusual because these guys are normally pretty good.

so that's all for now... going into a long weekend with not much real idea what the deal is (though I think the "you need to talk to the doc" line really suggests that they are going to say no go... which I did predict )

[kitkatz]

Shall I say it for you....and all of us waiting and waiting....."Sh*T"!

[RichardMEL]

another update:

Finally got a nice (and long) email from the neph.

The decision is no.

so well.. yeah... not much else to say really.

I'm a bit more bummed than I thought I would be since this was pretty much what i thought the response would be.

[goofynina]

You hang in there RichardMel, you never know when a cadaver will come up, i know it is upsetting and hard to understand but please somehow find it as a Blessing in Disguise,   we love ya friend 

[Wattle]

   I am so sorry Richard that the transplant has not gone ahead. But maybe it is for the best. They must have had some good reasons to say no. They have obviously thought hard about the outcome and must believe this is the best for all concerned.

I have been in the position you are in now and the disappointment is overwhelming. {{{{insert hug}}}} Try not to let it get you down.

[RichardMEL]

I know guys and trust me I apprieciate the reasons for the denial..they are concerned about the possible effect on my sister in 20-30 years.. and I always said if there was an unacceptable level of risk for her I wouldn't want it anyway.

Actually I'm doing mostly OK. It's my sister who is really upset and depressed and I don't really know what to say to her. At least she knows now and can get on with her life.

As for me.. well I just soldier on I guess and keep going to dialysis. Who knows what the future holds? I suppose my turn will come sometime but I doubt it will be anytime soon (going by the averages).

I do admit though as much as I was expecting this decison it has still hit me a bit.. I mean I guess there was always a little bit of hope that maybe something could happen and they'd allow it and well maybe in a few months I could be hoipefully rid of dialysis... I think it will be worse tomorrow when I go in for yet another session and instead of the "well maybe this might be one of the last 20 or 30" well now it could be 200 or 300... I think that will be hard.

anyway thanks for all your support. I'll be ok just well... yeah.. not much else to say i guess.

[kitkatz]

Tell your sister thank you and you love her for her support and offer!  Somethings just are not meant to be.

[RichardMEL]

Oh I have and she knows... she just feels very sad that I'm stuck with dialysis for God knows how long.

I'm kind of happy though.. she can get on with life and whatever happens to me won't affect her health wise...

All I could ask of my brother and sister is that they offered and did what they could.. it didn't work out for both of them but at least they tried for me and did their best. That's all I could ever expect.

[paris]

I am sorry Richard. Not much else I can say. Disappointment seems to go hand in hand with kidney failure.  So much to deal with.  Here's a hug  and wish things had turned out different for you.