I must have special antigens... not sure what to think

[pelagia]

If you whine here, no worry, we will understand.  Anyways, I don't think it's whining.  It's completely legitimate to want to understand how a decision that affects you is being made. 

Can't do much except send you a  .

[Wattle]

I am going to say it. I don;t want to say it. You might throw bricks at me. But here goes....




In Gods' own perfect timing things will happen.
'


Okay, I'm running and ducking now! 
                                                     ME    IHD

I agree and am fine about waiting. I am doing ok on PD. The problem is ...... as you all know by now........ I have NO patience. It use to consume me, waiting for the phone to ring. Now I just go about my daily grind. I haven't got a bag packed or even a list of things I might need. I figure I will just wing it. There are plenty of people who will rush out and buy me a nice pair of PJ's. I did find something Meinuk said when she got the call amusing. One of the first things she thought of was "I have things on this week". It's funny but that goes through my head now. I lay in bed thinking of when the call may come and all I can think about is all the things on the calender. I told you I was weird, genetics and all!   

[RichardMEL]

Thank you everyone you're all so supportive  

I talked again about it at the unit yesterday with my primary nurse. So far so good for the guy who got the call which is awesome. Fingers crossed.

About waiting for the phone to ring... it's funny because sometimes it comes to mind and other times it doesn't. I mean I always keep my phone on unless I'm in a cinema, meeting or movie or some other place/situation it would be inappropriate. I don't wander around waiting for it to ring though - I know that sort of thing can drive you crazy and as time goes on just get you depressed so I try to be positive about it. Just sometimes, during those quiet times in the middle of the night or whatever when there's not much to do but be alone with your thoughts, I do wonder.

I also have to remember thet I have it good compared to a lot of folks on dialysis - I am mostly stable, my labs are pretty good and the most important thing - I am actually allowed to have a transplant. I see plenty of patients come through who are either too old, or unable to be on the list for one reason or another and my heart totally goes out to them because baring medical breakthroughs dialysis is all they will know.

I talked to my family about it. They want me to ask the co-ordinator to find out about the antigens so I might see about it.

Thank you everyone for your support - specially all those nice things you all said about me. Not sure it's true but hey I'll accept it

[okarol]

We love you! 

[rose1999]

You are one of the most genuine, caring and best guys on here 
(it's OK Sluffbunny I said ONE of....)

[paris]

Richard,  there aren't enough words to tell you how much we all love and respect you.  If I could make it happen, you would get a kidney tonight.  You  deserve it so much.  You give so much of yourself to IHD.  Kindness seems to just flow out of you.  You always have great wisdom and insight to others problems and I am grateful to know you.   Keep asking your center questions and pushing.  Go ahead and whine -- just make sure you have some cheese and crackers to go with it!       This month is my 3 year anniversary on the list.  I never wait for the phone to ring and unpacked the bag after the first year.    "special antigens"??  You are just special everything!!   

[RichardMEL]

Paris if I'm so special how come I am yet to receive those "special" pictures of AlohaBeth HUH??? HUH? :rofl:

Again everyone thank you for the super kind comments. I honestly don't deserve them. I'm just me. I try to help where I can and give my opinion (right or wrong).

I hope everyone who is waiting can get a magical gift soon!!!!!!

[Lucinda]

Sorry Richard....I missed this thread.  I have to be more conscientious about looking at the transplant stories.  All I know is that I constantly hear of people getting transplants when they have been on the list a very short period of time and wonder about those who have been on it a very long time.  There is so much involved in the matching.  I also think they take a look at your whole situation and if you are coping well and your bloods are fine they would be more inclined to give an available kidney to someone else who is in more ragged shape.  I am sure they look at all those factors.   Age, health, how you are coping etc etc. It is hard for me because I don't want a transplant...had the offers but I have seen too many go wrong in my family so I think I would prefer to be in control of what is happening to me.  My family has other weird problems as well that doesn't help with rejection.  All my family had friend/family donors but I don't think they would have gotten a transplant if they had to depend on the list.  Anyhow, I am not going to say never but if I am reasonably well, I can't see I am going to be in that much of a hurry.  But I really hope you get one soon.  You just carry on whinging (don't think that is what you are really doing by the way), everyone on this site has good reason to.   xxx   

[RichardMEL]

Well I know that many factors go into the transplant choice and certainly me being stable on dialysis would be a factor against getting a go against someone in greater need(ie: sicker). That's OK I'd rather be more stable than sick!!!!

My main understanding of the general policy in oz is:

* Blood Group Match
* Antigen Match
* Time on Dialysis

and I had heard they skew a little to younger people - I presume those that can then get back to work and living a longer life. That is just anecdotal I have heard from dialysis nurses so don't know if that's true or not.

Obviously for the average of 4-5 years they quote lately that means some will go at 8 months or 2 years, and others at 7 or 8. I heard of one a few months back who had been waiting 11 and finally got one.

I don't know how I feel about potentially waiting another 8 years though. I suppose if I am I would be whinging even more... but I sure as hell hope Wattle has one by then!!!!

Still no response from transplant co-ordinator.

[RichardMEL]

Well folks I have some answers

First of all I have a PRA of 0% which is what I expected but good to know.

Secondly I asked about the HLA antigens etc, this is what I got back:

In regards to rare HLA types often this relates to specific ethnic
groups that are difficult to match,
I have spoken to VTIS and your tissue typing doesn't come up as being
rare or difficult, in fact you have
Come up previously matched for potential donors in the past
unfortunately someelse has either one better
Match or been on dialysis longer, so potentially you should get matched
again in the future.

This gives me some confidence at least that well I have already matched so potentially could again - maybe soon - and obviously the longer I wait the chances that I will be closer to "time waiting" top of the list would be more.

So well fingers crossed I guess??? However I want Wattle to get one first. We may well be in competition given we're both A's so who knows. I certainly would be most happy for Wattle to get that call ahead of me!!! Even better, if we both get the call!!! Sad to say but potentially one poor donor could help both of us...

[paris]

Richard, it seems like the news is good.   My kidney prayers will focus on a healthy kidney for both you and Wattle.   I thought it would happen in '08, but '09 for sure!!   

[RichardMEL]

hell yeah Paris! I gotta get over there and snag me some AlohaBeth before that guy in France whisks her away!!! hehehe

[okarol]

What is the average wait time for A kidneys, do you know? We can check here at the stats on the OPTN website, by state and blood type, do you have the same ability there?
It all sounds good Richard! Very good! 

[monrein]

That sounds quite hopeful Richard and my hope is that you get the call very very soon.  Of course I want you to get the girl too, whether it be AlohaBeth or some other equally fantastic young lovely.  You deserve both.
 

[RichardMEL]

What is the average wait time for A kidneys, do you know? We can check here at the stats on the OPTN website, by state and blood type, do you have the same ability there?
It all sounds good Richard! Very good! 

I do not believe we can do that here.

[Jess21]

and I had heard they skew a little to younger people - I presume those that can then get back to work and living a longer life. That is just anecdotal I have heard from dialysis nurses so don't know if that's true or not.

I think that here in the US, children go to the top of the list.

[charee]

Hey Richard , When i get home i will find the lastest newsletter i have from the RPA transplant team it had some good info about the list and waiting time . Have you been on this site www.anzdata.org.au  it has stats on how many are on the list etc



cheers charee

[RichardMEL]

Thanks Charee... interesting reading.. sad the numbers are so low. So right now I am 1/1300odd waiting... with approx 300-350 transplants a year you can see why the average wait is 4-5 years....

[Wattle]

Well folks I have some answers

First of all I have a PRA of 0% which is what I expected but good to know.

Secondly I asked about the HLA antigens etc, this is what I got back:

In regards to rare HLA types often this relates to specific ethnic
groups that are difficult to match,
I have spoken to VTIS and your tissue typing doesn't come up as being
rare or difficult, in fact you have
Come up previously matched for potential donors in the past
unfortunately someelse has either one better
Match or been on dialysis longer, so potentially you should get matched
again in the future.

This gives me some confidence at least that well I have already matched so potentially could again - maybe soon - and obviously the longer I wait the chances that I will be closer to "time waiting" top of the list would be more.

So well fingers crossed I guess??? However I want Wattle to get one first. We may well be in competition given we're both A's so who knows. I certainly would be most happy for Wattle to get that call ahead of me!!! Even better, if we both get the call!!! Sad to say but potentially one poor donor could help both of us...

Hi Rich, I just came across this post again. It's funny how things happen. I had never been flagged for a potential transplant the whole time on the list. I had adjusted my head around waiting 5+ years. You never know what is around the corner. You know the rest of my story! I didn't have a bag.. wasn't allowed to go home... had a diary full of dates (kids went back to school the same day).... and I hadn't shaved my legs!!!   

I use to lie in bed thinking of how it would happen and go through the list of the things I had to do and take. It all turned out sooo differently.

I really hope you are surprised soon and your world is turned upside down like me!   

[RichardMEL]

thank you dear Sally. You're awesome ( at unshaved legs... but you had the gorgeous stockings!! hehehe)...

I am just so glad that you DID get that transplant ahead of me. The system works the way it is supposed to!!!

I had my primary nurse whinging at me yesterday about how the Royal Melb has so many transplants, but we don't, and how come my number hasn't come up and all this stuff. I felt like *I* had to educate *her* about the process and that RMH does more transplants because they have a much bigger list of patients attached to them compared to us and blah blah blah... I know she is just frustrated on my behalf and it's funny I just have to tell her "look, it will happen when it happens" and *I* have to try to not get dragged into this whole frustrating issue of when, how, where etc because I think that could get very dangerous. I have a friend who swears she has a vibe it will be April/May next year. LOL. We'll see.

I just hope more than worrying about WHEN it happens is that when it does that it WORKS and is the right kidney for me! That's way more important to me than getting one tomorrow. I'd rather wait extra than get one that wasn't right or might fail soon after I get it - that is, after all, the risk we all take.

It's funny really obviously as much as I try to put it out of my mind of course I tend to daydream about it, or lie awake at night and wonder what it will be like when the call comes. What they will say? How will I react? How long will I have to get there? Will it be at 2 in the morning? or when I'm in the unit??? All that kind of thing. And of course I dream about the times after... when I am recovered, and it is settled in, and I can sit at work and drink cups of tea all day and have energy and plan real holidays and all that stuff... that's the goal!!!!

Thanks again Sally - you're a real inspiration to me and I love your story and just hope to hear it get better and better.... oh and yeah, shave your legs! 

[Wattle]

... oh and yeah, shave your legs! 

Are you crazy... I shaved my legs BEFORE I went to theatre! Can you imagine the hairs poking through those stockings? 

[RichardMEL]

so you're saying I should pack a razor .. or a waxing kit in my bag??? 

[pelagia]

I for one will want to hear every detail about your experience when the call finally comes.  And it will come.  It has to because you have been patiently waiting and you must be moving up the list.  And yes, you want a great match and that is worth waiting for. 

[RichardMEL]

Thank you

Sometimes I've dreamed about getting the call and thinking "oh but I have to post to IHD so everyone knows!!!!" lol Of course I can always text Tamara so I know she will let everyone know if I can't so yeah everyone will know if/when it happens and I'll be sure to type all about my experiences when I'm able. Given the recovery time I'll have quite some time at home to do nothing BUT type on the computer!!! 

We'll see what happens.

[tamara]

Rich,
I'm sure myself and Sally will be happy to fill in all at IHD also we will be there with Bells on for your pic of your bag !!!