My brother and I have been called in to see the neph.....

[Sunny]

Having you doctor ask for an appointment with you and your brother sounds like very positive news, indeed.
I've got my fingers crossed for you.

[jbeany]

I thought all pets were supposed to be able to see ghosts?

I'd have called and demanded an explanation for the early, double appointment.  You already have health issues; surprises are not a big help in lowering stress levels!

[RichardMEL]

Richard if you could only have one or the other I hope you choose the kidney...   I hope you get all three... Kidney, Money and AB.

oh you betchya!  The kidney is the absolute priority (OK AB is a close second..    ). Health is priceless. Money.. well it sure helps heaps, but there's no competition when it comes to what comes first.

The sad thing is that many people who have not experienced chronic illness would say the opposite...

jbeany: Sure, it was a surprise, but not really in a bad way. It's not like it's going to be a "I've got some bad news for you..." conversation. I mean yeah I include "we can't transplant from your brother" in that since I've always thought it might be a non starter, even more so since he has had health issues. If I remember correctly when his P/A called me she mentioned "he wants to talk about the transplant" or something like that. I didn't remember that till last night. Whatever it is I'm actually not very stressed about it at all (maybe that is strange?). Whatever happens will happen. Sure I'm curious, but I'll find out more in just over 2 weeks....

[Jean]

2 weeks is way too long to wait Richard!!!!! I dont mean for you, I mean for us!!!!!

[Poppylicious]

I really hope it's good news Richard!

Incidentally, my mum has good skin, my dad is odd (very) and I was worried about my cat earlier this year when she was really poorly.  I wonder if you were having my psychic reading and that's why she didn't pick up on your health problems ...

My cat sees dead people too.  It really freaks me out.

 

[RichardMEL]

wow poppy that must explain why she asked me if my periods were regular - and to think I told her i left high school 22 years ago! 

Guess you and Blokey are in for some cash, but it's only about 150,000 pounds I guess. Take out 20% VAT... well you might afford a curry and a pint of cider

 

[KarenInWA]

Richard, your periods are regular?  Well, that's good to know!!!   

KarenInWA

[RichardMEL]

OK here's an update of sorts.

I was on D yesterday when in walks my neph - now it's pretty rare to see him in the unit, as he's the head of about 3 hospital departments as well as the chair of medicine at one of the universities, so he's a VERY busy man, but he does also see patients, and he was in to see a newish patient who just started (fluid overloaded).

Well he saw me and being the lovely man he is he came over and said hello, then he said to me that they had to change the appointment with my brother "by a few days" for some reason. LOL. They changed it in the first place to bring it forward!!  (as it turns out it's being changed from the 8th to the 20th). Anyway since he was there he just chatted for a few minutes and told me that he just wanted to check with my brother and I about how he was feeling and if he still wants to go ahead, and if we want to go down the ABO incompatable path, or try paired exchange and how we felt. There is also this issue with cysts on my brother's liver, but he didn't think he was a big issue (probably benign) and not a concern. He didn't know about my brother's kidney stone issue, so he said he'd look in the history at what happened, but he didn't think that would cause any issues either.

So basically it's not quite what I thought it was, and it's kind of weird that he wanted to bring the appointment forward when he's usually been so slow about the whole thing, and now wants to put it back again(but that is probably just his work demands getting in the way, as can happen).

So guess I'll go in and we'll just chat about where to from here and see what happens. For the record I personally feel I'd like to explore paired exchange more than ABO - not that I don't trust ABO or don't want my own brother's kidney, but I feel the technology is more mature with a conventional transplant (though I had my fave nurse visit yesterday and she was jumping up and down for ABO so she could do my plasma exchange!!  ).

So anyway more later I guess.. but this doesn't seem to be as big a deal as I thought it might be.

[Rerun]

Well, I didn't say anything, but I thought he was going to ask you to house sit while he went on vacation!

                  

[MooseMom]

I personally think this is a very big deal.  This is your opportunity to make your wishes known and then begin finding a compatible pair.  I, too, think that a paired exchange would be safer, but I'm not a transplant expert.  Now is the time to start this process; it sounds like y'all have been gabbing about this for some time, and now everyone needs to act.  Get your brother's medical issues sorted out...are they problematic or not.  If not, get on with getting on the paired exchange list or however they do it over there.  There could be a pair waiting for you and your brother right now!  You are not going to know until you all get going on this, and the two of you going in an making that definitive choice is the first step.  Yes, I think this is a very big deal.  I can't get my transplant team to get the documents they want to list me, so if I were far enough into the process that they were actively looking for a matched pair for me and my DH, I'd be ecstatic!

[RichardMEL]

hey I'm not worried - I know it will happen soon one way or another - the psychic told me so!!!! 

[MooseMom]

hey I'm not worried - I know it will happen soon one way or another - the psychic told me so!!!! 

Tell your neph that so that he will know to get going with this.

[RichardMEL]

lol he might look at me like my meds need to be upped!!


Seriously though I absolutely plan to go in and just say what I think and how I feel and see where it goes from there. This process involves, obviously, my brother, and potentially others also consenting, and my brother could either change his mind, or get knocked back on further tests of his new medical issues, so all I really can do is say where I'm at, and the rest will take care of itself one way or another.

[texasstyle]

Sorry I missed this, I've been busy tanning lol. Anyway, I recently watched a program and they had people from the paired program you are talking about. In the end, the 4 people met up with each other and were thrilled with the final outcome. TP issues are a lot to handle physcially and emotionally for both parties. I can not even imagine. I hope something good will come out of this....hang in there

[galvo]

What texasstyle said, brother, hang in there!

[RichardMEL]

sure TS something great will come of it all when I can fly over and take you t dinner.. oh and your hubby too I guess.. but he won't want to come because you know I'll just point and stuff and say "no no.. phosphates" then "no no.. potassium!" then "no no.. fluid!!" 

(my evil plan is coming along nicely!  )

[RichardMEL]

Well everyone it's been awhile but I finally have an update on this because YES we finally had the long awaited appointment!!! 

Well, that is after arriving at 10:25 for the 10:30 appointment, but not being seen till about 11:10.... but I digress...

Basically the upshot of the meeting was not much - it was all a bit of a non event really - kind of what I figured really.

Something interesting though was that the doc was going through some issues with my brother - cysts on his liver and two kidney stones he had(as I posted earlier) and while the doc didn't think these were "showstoppers" he did want to get the liver experts to check out my brother and just give the all clear. Well so he said SO you'll then be good to go for an ABO incompatable transplant. That's good with you isn't it?" we both said yes, but then I asked him well what about paired exchange?

This is the interesting thing, to me anyway, he said well not really. That surprised me because he was the one who has been bringing it up whenever I've talked to him over the past six or so months. Well for one the program is in its infancy here in Australia (I don't think that's a big deal, sign up and make history I reckon!) but then he went on to say that to them paired exchange is not really for the situation I am in. I asked him to explain what he meant, and he basically went on to say that while my brother is not a blood group match for me, he's not a mismatch (I think he meant via antigens) and that we could do the ABO incompatable transplant and it would work fine. They saw paired exchange as being in the case where they couldn't do that. The example he gave was of a wife, who had given birth to a baby, wanting to receive from her husband. Because of the childbirth she would have a high PRA count to him "and the general community"(as he put it) and that would be a case for paired exchange (he didn't quite explain to me that if the patient had a high PRA how could you easily find a paired donor that would not react). So anyway he was basically saying forget the paired exchange and go with ABO, f course if the latest tests and opinions on my brother are all OK.

So it's a little strange to be honest. I'm not quite sure I get the reasoning that he gave, and perhaps I misunderstood him in some way, but there you have it.

So basically it's back to hurry up and wait!

[cariad]

Oh, Richard! I hope this goes somewhere for you in the end. I am not sure what your nephrologist is saying either, as ABO incompatible is not exactly the most well-established procedure, either. I only started hearing about it around 2006. For the hypothetical woman with the high PRA who cannot receive from her husband, why not do desensitization? IVIG and ABO incompatible both involve some intense, uncomfortable interventions for the recipient. (As an aside, I had two kids with my husband and my PRA was zero a year after my baby was born, so some people luck out.)

I agree with you about jumping in and making history. Paired exchange is a logistical problem, not a new technology, so I would think it would be much safer for you. Both of my Asian friends offered me a kidney, and they have the very common Asian blood type B. I asked about receiving a kidney from one of them (did not want to take their kidney, but asked just so I could pass the info along). The doctor said that I must be really brave to ask about that (I'm not) because it requires bombarding your system with his blood proteins, waging the battle inside your body, and then when your system finally relents after a month or two, you get your transplant. I know that's the nursery school description, but it gave me pause.

Did you ask him why now in terms of moving ahead with the ABO incompatible transplant? It would seem that if your average wait on the list is 4 years, and you've been on 4 years, that you could be really close to getting a cadaver kidney. I would suggest asking him how these ABO incompatible transplants measure up to cadaver donation, but I'm certain that there are not enough data on it to answer that question.

Best of luck! We all want to see you free of the machine, no matter how you get there. 

[RichardMEL]

yeah even the neph agreed the call would probably come sooner rather than later. He even joked that we might sort everything out with my brother and get it all organised and the call would come. I do know I have already matched with donor kidneys (well, that's what the co-ordinator told me that the red cross told her - so who REALLY knows the truth??). I guess whichever way it happens my time will come when it's meant to come.

Ironically a job my brother is going for is in the organ donation team at the red cross...... 

I decided to not ask the neph why he is pushing ABO now, when before he seemed to be a bit against it if anything. We'd been there for more than an hour already and somehow I just didn't think it was appropriate to harp on the subject.

Thanks for the best wishes!

[paris]

Regarding desensitization, it doesn't work for everyone.   Me for one,  but I sure wish it had.

I think I understand your doctors logic because I am similar to the hypotetical woman you meantioned.  The surgeons tell me I have a better chance of a stranger matching me than a blood relative.    So, I say go with the ABO and get the kidney!    Or better yet, answer the phone when it rings tonight!!   It is just time for it to be your turn.   

[Riki]

I may be a bit of a dummy, but what is ABO incompatible transplant?  I can't say I've ever heard of it

[RichardMEL]

In layman's terms it is basically a transplant between incompatable blood group donors. My brother is AB+, and I'm A+ so we can't have a "traditional" transplant, but using this ABO incompatable procress, which is relatively new technology, they can overcome that barrier. Several IHDers have had successful transplants using this method.

[Sunny]

It sounds to me like good reason to hold out even more hope.
They are definitely thinking of you and trying to find ways to help you get a transplant.I hope it's soon.

[Riki]

ok.. my parents were told when I was a child to not even bother getting tested, because the blood groups didn't match... Mom is B-, Dad is A+, and I'm O+

so, are you saying that with the ABO incompatible transplant, iit's possible that one of them could give me a kidney?  Or are the Blood types just too weird?

[RichardMEL]

Well, with ABO, my understanding is that the blood group is not so much the important factor, but if there are any postive cross matches(I think that's right)... Anyway whatever it is it's basically if your blood is incompatable with the donor kidney - if they can't filter out the bad parts then it's no go, but I do believe that yes, it means perhaps one of your parents could donate to you. You really need to ask your neph about this as they will have better information.

This is fairly newish technology.