I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: RichardMEL on June 20, 2010, 09:00:04 PM
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Anyone following my sig will have noticed the comment about my brother being tested for a potential ABO incompatable transplant - this started about a year ago and has dragged on for months - in part because my brother went to India twice - but also mostly because the neph has dragged it out. I think a bit on purpose. My neph is one of the most senior renal professors in the country and highly respected(Good) but I think he's a bit old school and somewhat wary about the newer technology involved with ABO incompatable transplants. My gut feeling is that he has been hoping that I'd get the call and we wouldn't have to do the ABO. In a way I'm actually sort of OK with that(if that's the case) because I'm a bit iffy about taking an organ from my brother because I know I would always feel this responsibility for his health.
Well a week ago my brother was admitted to the ER with a suspected kidney stone (oh no!) which passed uneventually(if you discard the pain he was in). More tests have happened apparently he has cysts all through his liver but they think he's had them all his life and not a big deal.
Well in between all this drama a call came in from my neph's P/A asking BOTH of us to come in to see him - pulling forward my regular appointment from the end of July to July 8th(his first free slot).
So initially I thought "Well he'll say because of the kidney stone thing that the testing is off we won't bother proceeding" but then I figured why would he want to see BOTH of us for that - he'd only need to see my brother.
So then a potential reason came to me - during my last appointment the doc mentioned to me that they were considering starting up paired exchange here, and he asked how I felt about that. I said honestly that I probably would prefer that to ABO as the technology was more settled for a live donation of a compatable kidney.
So i figure, what if they have a paired donation in mind and someone lined up possibly? That would explain calling both of us in, and possibly why he wants to do it "ASAP" (yeahin his world 3 weeks is ASAP given how busy he is!).
The more I think about it, the more I can't see any other reason to get us both in together.
I'm still not sure how I feel about it - even if my brother winds up donating to a stranger - I'd still feel funny/responsible about it -should anything happen to him health wise that could be tracked back to him donating - well that weighs on me.. even though I understand it is his choice to want to donate and his understanding of the risks etc in doing so... if I didn't need it he wouldn't have to go through something like that.
So anyway i guess it will be interesting to find out what it's all about....
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OOOOOOOOOOOOOOOOOOOOOMMMMMMMMMMMMMMMMMMMMMMMMMGGGGGGGGGGGGGGGGGGGGGGGGG! This is just so wonderful! I think you are probably right in your hypothesis!! If a paired donation program is being started, who better to be the initial pair than you and your brother. OK, so July 8 is really just around the corner, and once you've had your appt, you MUST come and tell us all about it. Oh, this would be so fantastic that I can hardly find the words.
I don't know what to say about your feelings of "responsibility"; these seem to be common feelings, and I'm sure I'd feel the same way. I think I would just 1. make sure the donor knew how very grateful I was and 2. hope that the donor is thrilled to be doing something to save the life of someone he loves. Before FSGS, I gave blood on a regular basis, and it always gave me such pleasure to know that what I was doing could literally save a life; there is no better feeling. Your brother has the opportunity to do something truly heroic, and you both should feel great pride.
I agree that the paired donation route would be better than ABO incompatibility because the great thing is that both get to help another pair of people.
I just can't wait to hear more!!!!
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hey if the donor is a hot blonde (gal) i'll accept in an instant... :rofl;
no wait, I think that should be the other way around..... :rofl;
anyway will let you all know ASAP what, if anything, transpires :)
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Hope that it's good news.
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This is sounding really good Richard and I am excited to hear what he has to say. OMG, I so hope you are going to get a kidney.
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Well I suppose this is an ok place to post this, but I did see a psychic last week (first time ever!) and she claimed that I would get a transplant between oct and march, and that I would be in hospital for 10-12 days. There would be a concern with rejection but it would be OK and while it would be painful it would be worth it as it would wind up a success.
Sooooooo you read it here... if it comes to pass... well... that would be nice :) ;D :urcrazy;
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Oooooooooooooooooooooo! Who needs a neph when you have a psychic! That would be so cool if she's right. Why not?!
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well she also claimed that I would live well into my 90's which gave me a giggle given my condition AND that my cat sees dead people - so the source may be a bit questionable! :rofl; :rofl; :rofl; :rofl; :urcrazy;
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Well Richard I don't know about the psychic but if the Drs are thinking of a paired donation,
I'm all for it. Will be sending good thoughts your way in the meanwhile.
Mimi
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Well if anywone was going to see dead people it would be a cat. Haven't you ever seen their reflector eyes?
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:clap; I sure hope everything works out for you Richard. The waiting can be hardest part. Years ago I went to a psychic & she told me I would get a brand new red car & the first time I drove it I would be in an accident.......... I never buy red cars & Frank teases me about this all the time & every time we go to a "car dealer" the psychic story is told.... :rofl;
Just remember your brother loves you & I'm sure if the tables where turned you would do the same. Best wishes.
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Sounding good, Richard. And the Tiges are winning!
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I don't post as often as I used to but there are a few people I check up on from time to time and you are one of them. I am so hopeful for you and your possible transplant opportunity!! Fingers crossed for you!!!
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Sounding good, Richard. And the Tiges are winning!
truly proof that miracles CAN happen!!!! :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; (2 in a row!)
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This was such a delightful read. :yahoo; I cannot wait to hear whether your suspicions are confirmed. I cannot think of another reason for you both to be called, either. Receiving across blood groups sounds really complicated. It was described to me by a surgeon years ago, and he told me it was not a pleasant option. Sounds very much like desensitization or what I went through with chemo, and I think it's so new, they do not know if these transplants hold out long term.
I love the psychic story, Richard. I desperately want to know, though - did you explain kidney transplant risks to her, or did she come up with the rejection story on her own? So many people seem to be unaware that transplants require lifetime maintenance and that one can reject the organ. In hospital for 10-12 days for a standard transplant??!! Crikey! I hope not....
I am so wishing that one way or the other, this is it for you. You've been on the list such a long time, who knows, perhaps you'll get the call as you wait to finalize things with your brother. The universe has a funny way of operating. Good luck! I am ludicrously impatient, so I'll be expecting that update July 7 (US).
PS: I actually went to a psychic party many years ago, although I do not believe in them at all. I've read a lot of James Randi, so I know their tricks. I met with the psychic, and kept my hands under the table (to hide my wedding ring). After listening to her stutter for a couple minutes, getting everything consistently wrong, I finally decided that as I was paying for this, I would treat it as fun theatre, and put my hands on the table. Suddenly she perked up, and started going to town with the predictions. She asked who the little boy was that she saw me holding. (I was pregnant at the time, but made her take a few guesses first.) We sooooo wanted a boy, and she had a 50% chance of being right, and she got it. She also said I would be a teacher, to which I immediately thought 'no way' but I did end up teaching ESL, maths, and citizenship to refugees for a year. My husband and I wanted to move to Africa at that time, she said that probably was not going to happen, but that the UK was a strong possibility. She also said we would sell our house around Easter, and that did actually happen. I still do not believe in psychics, but October to March sounds like a safe, promising prediction. :cheer:
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I love the psychic story, Richard. I desperately want to know, though - did you explain kidney transplant risks to her, or did she come up with the rejection story on her own? So many people seem to be unaware that transplants require lifetime maintenance and that one can reject the organ. In hospital for 10-12 days for a standard transplant??!! Crikey! I hope not....
Well I don't want to keep a lovely lady desperate :rofl; so here goes :)
Like you I am a bit of a sceptic, so I went in waiting to see how it would all work and I gave this person as little as possible. When I booked the appointment I gave her my first name only and my mobile phone number. When I called I called from my work phone which is in the city, and if she had caller ID and checked the number it would come up as my work's general number - if she somehow managed to get hold of a staff list, there are heaps of Richards.... I went in wearing long sleeved top to obviously hide my fistula(plus it's winter, so it was cold, so it wasn't an abnormal outfit to wear).
I have to say - I understand a lot of them use body language and listen VERY carefully to what you say to get hints and use psychology to hone in on things you will react to... so I tried to be careful with that and not give her anything much - but really at some point you have to share a bit or else it's a pretty dumb exercise.
Anyway look I have to say there are MANY things that she got absolutely right, and I can think of NO possible way she could know that stuff - even with body language and anything I might have said. Some quick examples - she got exactly the correct suburb I live in (even she was floored when I confirmed it!) - and there is NO WAY she could have known. I did not mention the way I got there, or anything like that, so there's no way. She talked about lots of little details that if they were random guesses they were pretty spot on, like my mum had great skin(she did!) or that my dad was "odd" (true!)... now if you were just throwing stuff out there hoping to get a hit, these don't seem like things to just throw out there because they're kind of specific.
Anyway on to the kidney answer. It basically went like this. We were talking about my beloved cat and she suddenly upped and said "You were worried about your cat earlier this year.. because she had problems with her kidneys" (true) "but she was OK" (also true - I am not sure if I posted the whole story in the pet thread but I took my cat in for a check up and flu shot and the vet said she had a too fast heart beat and he thought maybe it could be a kidney problem.. so that really worried me. He wanted her in for a urine test (we all know about that stuff here, right!? :) ) and after some stress by me worrying about it (and thinking oh the irony) they reported that her urine tests were perfect and there was probably nothing to worry about. Well so the psychic got that right (how???).
Well, during the hour talk she didn't mention anything to do with MY health and I was thinking hmm this is pretty major and you haven't mentioned it - what's the deal. So after covering various subjects - with I reckon about a 90% hit rate - she said OK do you have any questions? So I asked her about my general health (again not giving away that I had a specific concern or worry etc). Well she then said that I had a problem with my joints(I said no, but when I think about it isn't bone disease kind of close??) so she then said "You have something that makes you tired" (yes) then "something to do with the blood" (well, yes really - kidneys filter blood!)... and then she said "I'm hearing... 'like the cat'" - and well I had to say yes... kidneys. So she said "OK you're not on dialysis?" I said "Well yes I am" (had to give in at that point lol) so she shuffled the tarot cards again and said something like "You will get that transplant much sooner than you think. I'm hearing that 'doctors used to have many problems with rejection but it's much better now'"(and I got the impression she didn't really know much about that stuff) then she continued "It will be sometime between october and march, and you will be in hospital for 10-12 days. There will be pain but it will be worth it as it will be a success so don't worry."
Now we can take it all with a grain of salt.. but they are very specific predictions. Now don't anyone worry at all. I am not sitting here planning on it happening that way and if it gets to next April and nothing's happened that I'll fall into a pit of depression. I promise that. I have to say though I am more open minded about this stuff. I mean I can't rationally explain how she could get so many things correct - not just about me, but my family etc. She even picked that a friend's daughter had been burnt by boiling water the previous weekend(all I had said is that my friend's daughter had an accident). Again - very specific - and right.
Of course she also predicted I would win $380,000-$400,000 in the lottery which frankly I think is laughable, so I don't really think it's all going to happen, but obviously if I do somehow get that transplant during that time, and I did spend 10 or so days in hospital - well you'd have to admit that something was going on there (so hey, I've written this here, so this will be a record of either how wrong the psychic is - or how right).
btw down here it's usually around a week in hospital,but if there WAS to be a rejection concern as was suggested(that's the way I interpreted what she said) well it could well be 10 or more days in. So who knows?!
So there you go. fraud or paranormal talent?! I don't know what to think.. I suppose time will tell. if it works out the way she said, and I win the $$$ well hell I'll totally be a believer!!!! :yahoo; :urcrazy;
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I love the psychic story, Richard. I desperately want to know, though - did you explain kidney transplant risks to her, or did she come up with the rejection story on her own? So many people seem to be unaware that transplants require lifetime maintenance and that one can reject the organ. In hospital for 10-12 days for a standard transplant??!! Crikey! I hope not....
Well I don't want to keep a lovely lady desperate :rofl; so here goes :)
I have a vision that you will fast become my favorite person on IHD if you keep up this sort of talk.... :rofl;
I just love hearing about people's experiences with psychics, especially the spookier ones, like yours. And I definitely am keeping my fingers crossed that you will become a believer by way of a transplant and a fortune. :2thumbsup; Now that I think about it, the psychic I saw never mentioned my health, and I had my scars from my fistula and shunt covered. This was 8 years ago, though, so it was hardly something I was thinking about regularly.
If you ever have some time on your hands (say, by some unlikely scenario in which you need to sit still for several hours ;)) and you want to read an utterly killjoy take on psychics, check out Randi.org and do a search for psychic. In case you don't know, James Randi is a professional magician who does mind readings for entertainment while clearly stating he has no psychic ability.
Be well, Richard, and don't let the suspense wear on you too much! :bestwishes; :bestwishes; :bestwishes;
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Richard, I am really excited for you, it will happen my friend. On another thread , if you win all that money could I send you a begging letter.
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I'm super duper excited for you Richard! I can't wait to hear the news. I said this was going to be your year! What if I am right? I may have a new career, too! :2thumbsup; :beer1; :cuddle;
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I hope all your predictions come true ( and you share your lottery money with me!) :yahoo;
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Wow! I pray this works out for you. Of all the great people I have met on here I would say that you present the best attitude considering the circumstances. You give of yourself freely on the site and are a constant inspiration to all!!!
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:rofl; :rofl; I mention potential money and suddenly all these new friends come out of the woodwork!! :rofl; :rofl;
no way just kidding!!! Thanks guys.. I guess we'll see and the proof will be in the pudding one way or the other with what happens. Things definitely *seem* to have swung in a more positive direction in terms of something happening sooner rather than later - but then again that could just be my wish fufillment desires working overtime.... (now where are those bikini girls??!!! :rofl;)
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All of this sounds wonderful! Paired donation, sometime between Oct and March, and you will win $400,000 ! All that adds up to a good ending and you coming to Las Vegas in 2011!!!!! Seriously, Richard, you know I wish all of this to happen for you. You deserve this, it is time. I can't wait to hear what the neph has to say. This is all very exciting. :2thumbsup; :yahoo; :clap; :cuddle;
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oh the psychic didn't say I'd win the $$$ anytime soon - she wasn't prepared to name when (typical! :rofl;) so I don't think the two were related.
I will definitely update here when I hear more.
the only snag is that my brother had this kidney stone and he has cysts on his liver - this may rule him out of donating to anyone, so that may put the kybosh on any potential paired donation (even if that's what the neph wants to see us for of course!).
Anyway I will update here. Paris, you better keep AB on standby for me! :rofl; :rofl; :rofl; :rofl;
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Richard if you could only have one or the other I hope you choose the kidney... :rofl; I hope you get all three... Kidney, Money and AB.
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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.
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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!
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Richard if you could only have one or the other I hope you choose the kidney... :rofl; 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.. :rofl; >:D). 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....
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2 weeks is way too long to wait Richard!!!!! I dont mean for you, I mean for us!!!!!
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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.
;D
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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! :rofl; :rofl; :rofl;
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 :)
:beer1; >:D :urcrazy;
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Richard, your periods are regular? Well, that's good to know!!! :urcrazy; :rofl;
KarenInWA
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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!! :rofl; (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!! :rofl;).
So anyway more later I guess.. but this doesn't seem to be as big a deal as I thought it might be.
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Well, I didn't say anything, but I thought he was going to ask you to house sit while he went on vacation!
:rofl; :cuddle;
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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!
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hey I'm not worried - I know it will happen soon one way or another - the psychic told me so!!!! :rofl; :rofl; :rofl; :rofl;
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hey I'm not worried - I know it will happen soon one way or another - the psychic told me so!!!! :rofl; :rofl; :rofl; :rofl;
Tell your neph that so that he will know to get going with this.
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lol he might look at me like my meds need to be upped!! :rofl;
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.
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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
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What texasstyle said, brother, hang in there!
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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!!" :rofl; :rofl; :rofl; :rofl; :rofl;
(my evil plan is coming along nicely! >:D >:D >:D >:D >:D)
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Well everyone it's been awhile but I finally have an update on this because YES we finally had the long awaited appointment!!! :rofl;
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!
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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. :beer1;
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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...... :rofl;
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! :)
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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. :2thumbsup;
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I may be a bit of a dummy, but what is ABO incompatible transplant? I can't say I've ever heard of it
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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.
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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.
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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?
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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.
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I did some research last night, and I understand the procedure well enough, but I couldn't find it they even did it in Canada. From what I've read here, I'd say that Prince Edward Island and Nova Scotia are behind the times in a lot of ways
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Hang in there, Richard....
That kidney's coming soon.... I can just feel it... And I've predicted three so far!!!!!..... All three were transplanted within weeks of my getting 'that gut feeling'
Darth....
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let me know when you get a gut feeling about me, will ya? *LOL*
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oooh Darth if you're on the money I'm so coming to Dublin to take you out for a special meal (oh and I'll find something juicy for the Dougal the wonder dog!)
Thanks for the good thoughts - definitely hoping it will happen soon.
As I type (July 25th) it's officially(?!) my 4th anniversary of dialysis. One of my former nurses actually stopped by yesterday to wish me happy anniversary (it co-incides with her birthday so that's how she remembers). How sweet was that? :)
Hoping I'm not still there for the 5th, that's for sure! I'd rather be in Dublin, PEI, Seattle, Hong Kong or Vegas!!! :rofl;
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Hoping I'm not still there for the 5th, that's for sure! I'd rather be in Dublin, PEI, Seattle, Hong Kong or Vegas!!! :rofl;
Please come to Boston, I soooo want to meet you :shy;
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*blush* sounds like I need to construct a mega round the world trip to fit everyone in.
Trust me you don't want to meet me. I'm really not that interesting in real life!
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I was always under the impression that if you had kidney stones that you would not be considerd for donating. How they changed the regulations? Thinking of you
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Well according to the neph it's not a "show stopper" and that the real concern is that if you have stones then you're more likely to create more. Because the stones can block the link between the kidney and the bladder(hence the pain) the issue is that with one kidney the donor could be at some risk should stones form and block that one link.. but even the neph said that look stones usually clear within a few hours at the most, so a blockage will be temporary and not cause any untoward effects, and it's not like you wouldn't get it seen to because the pain is so intense.. so he was sort of saying that while there would be a slightly elevated "risk" to the donor to wind up with one kidney and the chance to form more stones being slightly higher than the general population, they didn't consider it to be something that would preclude the donation of a kidney.
It kind of makes sense to me anyway.
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I've never had a kidney stone but I've heard they are very painful. Ouch! lol. I admire how much (and others) put forth as vesting an interest in their health. There is so much you have to do I can only imagine thinking about it all the time consumes you. You know who hasn't taken any of his meds since last Friday until today. (I think binders though) Then we wondered why he was so wiped out today. Any whoo lol...I've learned a lot from you since I've come and consider it a pleasure to be your friend. Carolyn
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aww thanks TS hun. See I try to not let this stuff consume me day in and day out by concentrating on my work, my kitty, my horrible football team, and of course the lovely ladies in my life!!! These are all positive (well mostly positive!) things to keep my mind off dialysis, kidney disease, waiting for the transplant call and all that stuff. I honestly think I'd implode if I didn't have these other distractions.
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I actually watched an Aussie rules football match a couple of Sundays ago; it was shown on one of our Public Broadcasting Stations. One team was from Sydney and the other team was from somewhere else. Anyway, as much as I love sports, I have to admit that I couldn't make heads or tails out of it! I had absolutely no idea what was going on, but it was still great fun.
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Sydney suck!!! :rofl; Luckily my team, the Tigers, actually beat them a few weeks ago in a come from behind, and unexpected, win. It was great!
yes our game can take some getting used to - we handball the ball almost as much(if not more) than we kick it (but it's called "foot ball!") and mark (catch) the ball with our hands, but we have no padding, helmets etc, and it can be a very fast paced and exciting game. Glad you enjoyed it! :clap;
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Well here's an update of sorts for anyone still following this saga :rofl;
My brother saw the liver specialist about his cysts and they seem to think it is OK and wouldn't be an issue in relation to transplant. They did some followup labs which they will check out in a month, but that seemed to be more routine than anything else.
So yeah that's good.
Until the other day when he saw a naturopath and they did some tests and pronounced him chronically dehydrated (yes, the irony is not lost on me). Supposedly so that his organs were in danger at whatever level he was at. He's also got very low potassium (Guess this happens when you're vegan who hates tomato ! :rofl;). He's never been much of a drinker, but he's definitely been TOLD that he is in bad shape.
He seems to think it's all over in terms of donating to me. I told him I didn't really care about that but it was more important that HE will be OK. So we're not quite sure where that is at - he is having followup tests in a month apparently to see where he is at (so his situation can't be THAT serious?!) but yeah.
So he draink a "heap" of water over the weekend. When we asked him how much that was he exclaimed with such pride "2.5L" oh good grief!!
Yes, I do find it very funny - here I am desperate to drink 3+L a day, and there he is, NOT drinking! :rofl;
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Well here's an update of sorts for anyone still following this saga :rofl;
My brother saw the liver specialist about his cysts and they seem to think it is OK and wouldn't be an issue in relation to transplant. They did some followup labs which they will check out in a month, but that seemed to be more routine than anything else.
So yeah that's good.
Until the other day when he saw a naturopath and they did some tests and pronounced him chronically dehydrated (yes, the irony is not lost on me). Supposedly so that his organs were in danger at whatever level he was at. He's also got very low potassium (Guess this happens when you're vegan who hates tomato ! :rofl;). He's never been much of a drinker, but he's definitely been TOLD that he is in bad shape.
He seems to think it's all over in terms of donating to me. I told him I didn't really care about that but it was more important that HE will be OK. So we're not quite sure where that is at - he is having followup tests in a month apparently to see where he is at (so his situation can't be THAT serious?!) but yeah.
So he draink a "heap" of water over the weekend. When we asked him how much that was he exclaimed with such pride "2.5L" oh good grief!!
Yes, I do find it very funny - here I am desperate to drink 3+L a day, and there he is, NOT drinking! :rofl;
:rofl; :rofl; :rofl;
Richard, I swear you are the cutest thing. You find the humour in whatever comes your way.
I hate to even mention this but drinking was such a struggle for me after transplant. I used to dread having to start in the mornings and then doing all my little calculations all day (OK, so you're more than used to those) would have me in a panic by the end of the day when it would be clear that I had not even come close to my goal of a minimum of 60 oz per day - or maybe the goal was even more, don't remember. I tried to pick foods that had a high moisture content, but since I hated eating even more than drinking, this was precious little help. In a weird way, I was relieved to be put on saline those few times that I was - all I could think was "At least I don't have to force myself to drink for a little while". Of course, I got over that, and the food revulsion, and that aspect of recovery is smooth today. I hope that you get to experience that feeling of normalcy much earlier than I did.
Oh, and how can anyone not like tomato? Especially a vegan? What on earth does he eat??
Good luck however this turns out, Richard!
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awww cutest thing?
:shy;
can you inform some of your single female friends about that? :rofl;
Yes, he's a vegan who hates tomato, mushrooms and peas. God knows what he eats. It's insanely hard to take him out to dinner.. I swear!!!! :rofl;
About the post-transplant drinking thing. A nurse told me a few years ago one of the big problems with getting folks to drink as much as they should post transplant is that the bladder tends to shrink over time due to lack of use(if you follow fluid restrictions that is :) ) and post transplant obviously you need to fill it up time and time again and it takes time for the bladder to expand again.
For myself I plan to have a 2L bottle of water in my fridge and drink from that. If I get to midnight and there is still water there I will drink it down. That's on top of regular drinks of course like soft drinks, tea, coffee etc. I figure that way I will ensure I get closer to 3L/day. Obviously if I find I need more then I will modify that. Given I could down a 600ml bottle in about 30 seconds, I somehow don't think that taking fluid in will actually be a problem, but I do have a method planned to hopefully ensure i do the right thing.
That is whenever I actually get a transplant.....
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I'm looking forward to hearing the update a month from now. I hope it's good news! And I LOVE your new profile photo, Richard! :clap;
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I hate to sound really thick, but why was drinking after a transplant so difficult, cariad? What exactly was the problem?
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Love your new picture Richard.
You probably have to fight off all the nurses.
I'm holding out hope you get that transplant soon. I think your time is arriving.
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I hate to sound really thick, but why was drinking after a transplant so difficult, cariad? What exactly was the problem?
I know for many patients, who have trained themselves to limit their fluids while on dialysis, having to go from the bare minimum to guzzling gallons of water - it's a tough transition.
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Well finally I have a small update on this.
My brother saw the liver specialists, had to have some followup tests but was eventually declared OK to go, and he then went to see the neph, who has also cleared him to the next stage - which is to get a second opinion from another nephrologist, and then we potentially go to the Royal Melbourne Hospital (where Tamara and Sally had their kidneys) for an ABO incompatable donation.
So that is good!
I have to admit, and I discussed this briefly with the neph the other day when I was seeing him, that I still have a degree of feeling of responsibility about the whole thing - as in if I accept his organ(and start hating tomatoes, mushrooms etc :rofl;) and then something happens to him down the track that could be traced back to his donating... well yeah I would feel responsible for that. Yet I know that it's only a "what if..?" and may never happen, and of course that it is his wonderful choice to want to go down this path. It's still something i mentally am trying to decide about. Obviously I understand I still have the ability to say "no" but then how ungreatful does THAT sound making him go through all these hoops *for me* and then saying "well no actually I don't feel comfortable with this" and then having him feel rejected, hurt, etc. *sigh*
In a way I just want that cadaveric call to come my way so I don't have to make this choice. Does that even make sense or do I sound stupid??? Someone please slap me around and inform me what is right!! :rofl;
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I understand what you're feeling, however, I also know that a live donor kidney is what is best. Better chance at making it and all. Especially from your brother! :) Of course, no one can tell you what to do. :cuddle; I would accept his gift with open arms and abdomen and stop the "what if" thinking. We live in a great time to have living donors.
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I had very similar feelings, Richard, except I would never accept a cadaveric kidney because it would mean I could not do the trial. I wanted Gwyn to back out, and yet I really did not. It is really such a confusing set of emotions and definitely a choice I was hoping would be made for me in some magical way. (It wasn't and I'm still a relatively sane person, so there's good news.)
I think it makes perfect sense for you to want that cadaveric option over your brother. Then, if something goes wrong, it is still devastating but you won't have to confront the emotions of the donor, and feel guilty while your brother may actually suffer his own feelings of guilt that his kidney didn't work. Has he gone through the psychosocial part of the eval yet? They should ask him how he would feel if your transplant fails and what type of relationship the two of you have. I was warned by some member of a transplant team once that often when one spouse donates to the other, the relationship ends in divorce shortly after a transplant fails. I am sure there would be some awkward feelings that would need to be addressed should the unthinkable happen.
Can you talk to your brother about these things? I know Gwyn could never have this sort of frank, personal discussion with one of his brothers, but could you? (with your brother, that is, not one of Gwyn's!) "I am so grateful that you have offered to do this, but I am reluctant to accept because I would be wracked with guilt if something happened to you" and see what his response is?
What is right is what's right for you. (I know, aren't I the helpful one!) If the call comes, grab it, but I think if it doesn't and you complete testing, hmmmm..... maybe the universe, or a certain psychic, is trying to tell you something. No slaps, either, just hopes that you are near the end of your dialysis journey.
Oh, and if you become a tomato/mushroom loathing vegan, I'll take you to lunch and pick up the slack from your plate. Problem solved! :rofl;
Good luck, Richard! It is a hard gift to accept, but I know that if it happens, you will accept it with as much grace as anyone ever has. :cuddle;
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I remember having a similar conversation with the transplant coordinator once. I told her that since I had already lost 2 kidneys, I was afraid of taking a kidney from a living donor, because I wasn't sure if I would be able to face them again if their kidney should fail too. What she told me is that I would have to get into the mindset that the kidney is no longer theirs, it is mine. I don't think I'll have to worry about that, though, because no one has ever stepped forward and offered to get tested.
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Thanks Cariad. if you weren't married I'd love you :) you're always so nice and thoughtful :)
Could I tell my brother what I'm thinking/feeling? Yes and no. He's actually not in such a good place generally at the moment - a lot of things going against him from his love life to lack of a job for 18 months and even his football team let him down (they got to the grand final 2 years in a row, and missed it by a kick).... I know he is feeling this very personally (and who wouldn't?)... could I really tell him that all the crap he is going through with tests and stuff... well I'm not sure how I feel about it? I sort of can't do that to him.
And yes, I feel that if all the testing comes through and it's given to us as the option I will say yes, despite my feelings, because I know he knows the risks and is willing to make that choice *for me* - and how could I refuse such a beautiful selfless gift???
Yes, you are right, if I had a cadaveric donor and it fell to pieces, at least i wouldn't have that extra to worry abotu of his guilt or anything like that - that is also something that I worry about.
I do not think he has had the psych test yet - not sure when that comes into it. I've already been through one with my sister though (it was an absolute joke though because they just had both of us sit together and talk for abour 45 mins - not even getting us seperately to talk about our feelings etc.. which seemed odd to me).
And yeah, I know the psychic prediction IS in the back of my mind!! :rofl;
I guess we'll just have to wait and see what happens. At least this is one step further along the line.
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Richard, my love, you are being self-indulgent. :cuddle; I refuse to believe that a man of your wisdom would for a second think about turning down the opportunity to live a "normal life" AND refusing your dear brother the chance to give you a priceless gift because of a worry that you MAY feel guilty for something that MAY happen. You are twisting yourself into an existential pretzel with all this twaddle about guilt. You and your brother have had many many months, with more months to come, to educate yourselves on the risks and benefits, and you have to give yourselves credit for being intelligent enough to understand your choices.
What would happen if your brother became ill and needed you to look after him, but you couldn't because you were stuck on dialysis because you felt too guilty to accept his kidney. Would you feel guilty THEN? You could dream up all kinds of scenarios where you played the villain of the piece and could wallow in guilt, but we all know that there are no guarantees. Guilt can be arrogant and self-indulgent. Gratitude is generous and loving. Acceptance of a gift is humbling. Let your brother save you if he can. :cuddle;
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I understand the concerns, Richard. All my kids were tested and a couple of friends. I was never sure I could actually accept theirs. They are all young, have children(except AlohaBeth!!) and I felt like I would be putting them in jeopardy. My oldest daughter said it wasn't my decision, it was theirs. I was almost relieved when no one matched. It has been easier with a cadaver kidney. Although I think of the donor and family every single day, it is still kind of abstract.
That being said, you know I love you so much and I want you to have that kidney. I want you to take any one that comes your way, is offered to you and matches. :2thumbsup; You know your brother and how he would react if the kidney were rejected. I think we can be logical and know all the risks --- but the emotional side is very real. It all comes down to if it feels right to you. You are one of the wisest men I know. I respect your opinion and know you will do what is right for you. Love , :cuddle; :cuddle;
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Thanks Cariad. if you weren't married I'd love you :) you're always so nice and thoughtful :)
Ah, sweet Richard! You've made my day. (*grumble grumble*.... stupid marriage always keeping me from doing fun stuff .... *grumble*) :rofl;
I was so touched by this, and when I read it to Gwyn he said "He can still love you, just don't get caught!" (Look, I'm just passing along what I heard. I'm as shocked as any of you!)
That's lovely of you to consider what your brother's going through, and it does indeed sound like a rough patch where he truly does not need someone else's troubles heaped upon him. I'll tell you a little secret about myself. Everyone else stop reading!!! (Ha Ha. Just kidding.... Did they fall for it?)
:secret; I went through a point in time much like what your brother seems to be in right now. I had moved out of a city that I loved for a city that I detested (because that was where Gwyn was employed) and I was too depressed to socialise often or look for a job or do much of anything. On top of that, I believe I was having a very dangerous psychological reaction to the anti-malarial Lariam after coming back from Africa, an evil drug that has led to both suicides and homocides.
Anyhow! I needed an accomplishment to focus on, something where someone would say "We really needed you at that moment, and you came through - thank you!". I know that this is not an appropriate reason to become a donor, but what a boost to his self-esteem this will be if you both go through with it. A job pulled me out of my dark days, and it could well be that this pulls your brother out of his. I certainly notice a change in Gwyn - extra confidence along with a huge weight lifted off of him. He did it, he survived, and he's recovered! Maybe just maybe this will help your brother, too.
I was in tears at dialysis over the thought of my husband donating. I really do hate dialysis - hated dialysis - and the thought of my husband of all people in the world ending up where I was because he tried to help me completely overwhelmed and consumed me at that time. It is fear driving preemptive guilt, and it's normal. I cannot even access those emotions any longer, though. Gwyn is fine and I do not worry about it anymore. We will enjoy what we have until it ends, and if it ends, we will handle it.
Get the transplant and come to America! Bring your brother! Two single lads with Australian accents and a story to tell? *swoon* You'll need private security to keep the sheilas off! :-*
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i have nothing to add as far as 'pros' or 'cons', I just wanted to tell you how wonderful it is to read of your possible transplant. I couldnt be happier for you and I wish you all the happiness the world has to offer.. I will be surely following your progress :-) AND.........is this not the coolest place ever this IHD board. I mean, just look at the fun, concerns, and love shared here. We have all been blessed to have found it...
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??? I'm confused. We all praise living donors. "We love living donors!" Remember?
But, again, I understand your feelings and concerns. :cuddle;
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Dear Cariad, thank you for your thoughts and sharing. That is a very good point that I had not considered - the self esteem boost it would give him by doing something positive like that is priceless - that's really a very valid point. It's funny I don't worry that he'd end up on Dialysi himself, though I think maybe that is something I should worry about :rofl; Just more a general concern that something bad might happen should he donate - and then of course there is the emotional issue of donating that ends in failure (and at some point, it would, but obviously I'm talking about an instant rejection, or 3 months or something).
It's interesting to read Paris's comment from her daughter that "it's not your decision, it's ours" - and that reflects the point that for my brother it is his choice to want to donate to me, and I need to understand that it is his decision to take that risk and I should just shut up and accept it with good grace.
I need to so I can come take Cariad out to dinner... no, we won't get caught.... no, really.. we won't.... :rofl;
Thanks everyone for your thoughts, concerns and comments. It's appreciated very much!!!
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I was once told that if I didn't let people help me, I have deprived them of their joy in giving. I never looked at it that way before. I just have a hard time accepting help or gifts. But this one statement made me realize I needed to learn how to graciously accept help and just say thank you. A kidney is probably the biggest gift one could give. Let your brother give you this gift he has for you. And just say thank you. :cuddle;
I talk really big, don't I? :rofl; I am great at giving advice, but have a hard time following it! I just want you to get that kidney. :2thumbsup;
Moosemom, about the drinking issue. For me, since you have to record every ounce in and ounce out, looking at the log all day long can be a little overwhelming. Half way through the day, you see how much more you need to drink and wonder how you will drink it all. My intake is suppose to be between 75-100 ounces. I haven't downed that much fluid in a long time. Then you stress if the output is no where near as much as intake, because you could be holding fluid. I know it will get easier, but it is a part time job getting all those fluids in. I keep reminding myself that I am helping the kidney by drinking. It is just a whole new way of thinking about fluids!!
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I don't ever remember being told that I needed to drink after transplant, but then, I was never fluid restricted either. I'm not fluid restricted now, not officially anyway. I just watch my intake, because I have no output until I'm at dialysis
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I don't ever remember being told that I needed to drink after transplant, but then, I was never fluid restricted either. I'm not fluid restricted now, not officially anyway. I just watch my intake, because I have no output until I'm at dialysis
Same here. I asked my doctor how much I should drink after transplant and he said "Drink when you are thirsty" and "Don't allow yourself to get dehydrated". That's it. I was never told to drink, drink, drink. I was never on fluid restrictions either and I have always been use to having a drink near by, so I was never worried about getting dehydrated. I don't think I've ever been dehydrated in my life. lol
Now, when I had that silly drain in my new kidney I drank one bottle of water after the next so that I was always sure the kidney was ok. I hated having that thing in my kidney.
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Richard you silly man you asking to be slapped around!!!!LOL we all know you'd enjoy that faaaaaarrrrrr to much >:D. I am :pray; now that we are in October all the things the psychic told you start to come true...xoxoxoxo oh and FYI 1 of Otto's brothers had a ABO transplant 7 years ago and is doing GREAT :-*
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I wish I knew more about these types of transplants, because my mom is willing to donate, although I don't think she's healthy enough to do so, but she'd have the option. The rest of my family doesn't seem to give a shit. Mom would do whatever she had to if she thought she'd be able to give me a kidney
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Richard, I can tell you have a very loving and caring brother. He sounds like he truly wants to do this for you despite any issues he might come across while going through the approval process. You are so fortunate and extremely worthy of his efforts. I hope all goes well.
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Since my kidney is taking it's own time to wake up, my fluid intake is important. It actually is helping get "Sean" working and doing it's thing. But my team has told me over and over not to get dehydrated and chance rejection. As I said on another post, each center seems to have their own set of rules. I just do what they tell me!! :2thumbsup; If they tell me to stand on my head to make my kidney work better, watch me stnd on my head!!! :rofl; :rofl;
Richard, I forgot about the October prediction!! Maybe it will be on Tamara's wedding day! :2thumbsup; Tell your brother we all love him (almost as much as we love you!) and appreciate what he wants to do for you. :cuddle;
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with the fluid intake issue post transplant I'm aware how important that is. 100 ounces = 3L approx, and that's a lot, but then again I used to drink 2-3L of water prior to D. I've already planned to keep at least a 2L bottle of water in my fridge and drink from that daily and ensure it is empty before I go to sleep - that's before anything else I drink during the day like tea, coffee, soft drinks etc. Obviously I'm not transplanted yet so I don't know what my requirement will be, but I know I will do whatever is required to keep that gift going to the best of my ability. As I see it it's just another application of willpower. Right now I use my will to limit what I drink... hopefully I will be using it to drink more (and right now, I just cant' wait for that to be my "problem")... though I am also aware that with these restrictions I've had for the past 4+ years my bladder has shrunk and it won't be used to large volumes going through it, so I may have to pace how I drink those litres.. but I am pretty confident that won't be a problem for me. I can drink one of those 600ml bottles of water or iced coffee or whatever pretty quick, all I need is five of those in a day and I'm at 3L. I could do that in 5 hours let alone 24! :)
As for the psychic prediction and Tamara's wedding - remember the psychic predicted it would be BETWEEN october and march, and let's face it, a live donation won't happen in the next two weeks!! :rofl; Indeed I can't see it going ahead before the new year. There is still an independant evaluation of my brother to take place, and who knows how long THAT will take, or even when it will start. This process has been going on since June last year, so they're hardly going to speed up now. As I've always said I have the definite feeling that they are dragging their heels a bit on this process because they're hoping the cal will come through in the meantime. I have no proof of this, but it's just a feeling I have. I am not certain why that would be, other than my neph, as senior and respected as he is, does not seem to be too trusting of ABO transplants, but again that's just an opinion not based in fact.
So anyway, still some time to go I think.
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Richard you silly man you asking to be slapped around!!!!
I'm worth the risk! >:D :rofl;
Seriously, Richard, it sounds like your nephrologist is a bit wary of ABO incompatibles and secretly wants that call to come through. It sounds like he recognizes what an informed patient you are - how much effort you put into your health - and is willing to take an extra risk with you if that is the way you choose to go.
I was never on fluid restrictions (well, not since I was a little kid) so I put my inability to drink after transplant down to just feeling like death warmed up for at least 2 months post-transplant. I did not keep a log of my fluid intake, and my little post-transplant guide said that it was only a major concern for the first six weeks. I had to be put back on saline a few times for low blood pressure which my surgeon said was due to inadequate fluid intake and the chemo devastated my veins, so IVs and blood draws were gigantic sources of stress for me. At one point, the nurse had stuck me 3 times and was down to the very last usable vein (which she thankfully hit successfully). So, like Paris said, drinking felt like a chore and the immediate consequences of failure were terrifying to me, never mind the possible damage to the kidney. I think I was told to drink a minimum of 60 oz per day, but after all that stress, I strangely cannot remember the figure. (And it's only been 7 months!)
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you have to be careful with drinking after transplant, though.. especially if the kidney starts up right away like both mine did. I remember the first time I peed myself after the first transplant. I was 14, so it was a bit embarrassing. I hadn't really stopped peeing that time, but it had diminished a bit, but I don't think it was enough that I really noticed. I was sitting on a commode that didn't have the pot attached, and I was watching tv. I've no idea why I was sitting on the commode, but anyway. One of the nurses came in and asked me why the floor was wet. I didn't even realize that it was wet. They figured that I had peed, and didn't even feel it. I had to change my clothes, and they had to teach me how to hold it again. It was mortifying at the time. I had trouble right up until I was 16 or 17, wetting the bed. It got to be that a toilet in a dream was something that told me I needed to wake up. I still wake up sometimes if I dream of needing to go, even though I can't now.
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so many fun things to look forward to!!! :rofl;
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So my brother the vegetarian is upset that they want to use heparin during the op and wants to know if there's a vegetarian friendly alternative? Anyone know?
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I didn't know heparin was an animal product...
I was on something for a while that was used instead of heparin, because we figured the high amounts of heparin used was what was making my hair fall out.. I can't remember what it was called.. sodium something or other.. I think the heparin was still being used on the machine, but they used this stuff to lock my line.. Richard, send me an FB message before you go to bed tomorrow night, and I'll ask the nurses what it was called.. I have a mind like a sieve.. I'll never remember if someone doesn't remind me.. *L*
Nevermind.. had a brain fart and remembered what it was called...
Trisodium Citrate http://ndt.oxfordjournals.org/content/16/7/1521.2.full
The article explains what I was using it for, so I don't know if it can be used instead of heparin in other applications.. I'm sure the drs would be able to tell you
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Since my kidney is taking it's own time to wake up, my fluid intake is important. It actually is helping get "Sean" working and doing it's thing. But my team has told me over and over not to get dehydrated and chance rejection. As I said on another post, each center seems to have their own set of rules. I just do what they tell me!! :2thumbsup; If they tell me to stand on my head to make my kidney work better, watch me stnd on my head!!! :rofl; :rofl;
Richard, I forgot about the October prediction!! Maybe it will be on Tamara's wedding day! :2thumbsup; Tell your brother we all love him (almost as much as we love you!) and appreciate what he wants to do for you. :cuddle;
I hear that!! I told the doctor I'm seeing for my back that if the treatment is laying in a tub of green jello for six weeks then I'll do it. lol Same with my kidney. Whatever it takes. I'm surprised at the similar info we all get from our doctors, as well as the totally different info. Most of all it's the same. Plus, your little bean is sensitive right now. And shy... :shy;
I want to see you PARIS!!!!!! :cuddle;
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Yep Riki, heparin is made from pigs intestines. Back in 2008 Baxter had to recall millions of vials that had ingredients that was made in China. FYI
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I want to see you PARIS!!!!!! :cuddle;
Me, too, Kelly. I get teary just thinking about how much I want to see you and Karol. We can't let 2011 go by without meeting somewhere!
Hmmmmm, pigs intestines?! I think I could have gone forever without knowing that :rofl; :rofl;
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Apparently Clexane is a viable alternative however I note on wikipedia (for what it's worth):
Decreased dose is recommended in renal failure or ESRD patients. For DVT prophylaxis in a patient with GFR < 30, a dose of 30 mg daily is recommended. For DVT prophylaxis in a patient with GFR > 30, full dose (40 mg daily) can be given. For treatment of DVT/PE, the standard recommended dose is 1.5 mg/kg once daily. If the GFR < 30, the dose should be changed to 1 mg/kg daily.
http://en.wikipedia.org/wiki/Enoxaparin_sodium
Anyway my brother seems happy enough if this stuff can be used. Of course the doctors may say no....
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I found this:
"Vegan? Sorry, We Have Porcine Heparin on the Menu!" http://www.anesthesia-analgesia.org/content/102/3/976.1.full
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So my brother the vegetarian is upset that they want to use heparin during the op and wants to know if there's a vegetarian friendly alternative? Anyone know?
I wish I had known about this before the transplant, although I did not even know I would need Heparin after the transplant (and that it would have to be an abdominal injection - ow, ow, ow!) Some pregnant women need to inject these every day, twice a day for 8 months or so - I cannot imagine!
Anyway, as I've said many times before, we long standing vegetarians can get really sick if we ingest animal products, but I don't know if that applies to injected substances or not. I was really sick after transplant, but good luck tracing that back to one particular part of my treatment. So many potential culprits there.
Well, what's done is done so I am not going to dwell on it. I accepted ages ago that I am going to accidentally be exposed to un-vegetarian products once in a while. I can see why your brother, though, should receive special accommodations so long as it will not interfere with his health. If they had said I needed to eat a porkchop before my transplant before they would perform it I'm sure I would have found a way, but donors should not have to compromise. I hope they can offer a solution for him.
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Well it will be interesting to see that IF the surgery is approved what they will offer for him and how that works.
Just on the vegetarians eating meat after a long time - I just watched the latest episode of The Amazing Race wherein to fast track to the pit stop(ie: avoid all the challenges in that leg of the race) this team of doctors(ironically) had to eat a cooked sheeps head(or something like that) in Norway. One of them had been vegetarian for over 20 years.. I can't believe she sucked it up and ate the meat - all for that shot of a share of $1 mil.
See my brother would NOT do that. I would have said nope, I'll forgo this.
Well everyone's different I guess.
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Did they suck out the eyeballs? Yum!
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For a million dollars and I was a vegan I'd say 'bring on the sheep's head'. I wonder what her friends would say at back home when she got back with a million dollars.
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I watched that episode also, and couldn't believe she ate that head!! Beth's friend from Tunisia loves lamb and eats the sheeps eyes!!!!!!!!!!!!!
:puke; :puke; :puke; Now, THAT would make me a vegetarian! :rofl;
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I don't think I would have been able to eat the sheep's head, and I'm NOT a vegetarian. I can see my nutritionist being incredibly pissed at me if I told her I'd decided to become a vegetarian. *L* I may do that for April Fool's.. call her and ask her what to do for protein because I no longer eat meat....
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Just on the vegetarians eating meat after a long time - I just watched the latest episode of The Amazing Race wherein to fast track to the pit stop(ie: avoid all the challenges in that leg of the race) this team of doctors(ironically) had to eat a cooked sheeps head(or something like that) in Norway. One of them had been vegetarian for over 20 years.. I can't believe she sucked it up and ate the meat - all for that shot of a share of $1 mil.
See my brother would NOT do that. I would have said nope, I'll forgo this.
No kidding on the forgoing part! Nothing to do with being a vegetarian, although that certainly would play into more mundane requests like "Can I interest you in a chicken wing?"
I am astounded that this was a doctor. Eating sheeps head, especially the eyes or brain or any other portion that comes into contact with the nervous system is an excellent way to find yourself with a deadly prion disease. Cooking does not eliminate the risk in the least. There is a group of people in the middle east who traditionally eat this part of the animal, and they are a classic cluster group. Crazy. I would not ever go to a doctor who treats her own health so cavalierly for a bit of cash. These shows expose such a seedy aspect of people. Is there anything that these people will not put up for sale? Can I get a look at this team (without watching one moment of the broadcast!) so that I will never accidentally entrust my health to any of them?
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They're surgeons.. they think they're invincible.. *LOL*
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Richard hope it works out for you!!
This post made me laugh because my brother (who is also on dialysis) went to a psychic last week and she said he was also going to live until his 90s! :rofl; We just wondered what quality of life that was going to entail!
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by the time we're in our 90s, there will be some kind of artificial kidney that does the same job as the real kidney, that can be mass manufactured, and implanted like a pacemaker.
At least, that's what I'm hoping for.
I mean, if they can make a device that keeps Dick Cheny's heart pumping blood, why not?
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Richard hope it works out for you!!
This post made me laugh because my brother (who is also on dialysis) went to a psychic last week and she said he was also going to live until his 90s! :rofl; We just wondered what quality of life that was going to entail!
I think these psychics are in cahoots if they're claiming the same stuff!!!! :rofl; :rofl;
Yes, well my family is still waiting for anything this psychic I saw to come to pass. My brother also saw her and she suggested some other specific things for him in the next few months, so we're eagerly awaiting confirmation of her brilliance, or uselessness!! :rofl;
I also agree with Riki - I think 50 years from now (when/if I hit 90) I feel there will HAVE to be such advances in technology that we will have something more practical. Hopefully I'll still be chasing the girls then too ! :rofl; :rofl; :rofl; :rofl;
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50 years from now (when/if I hit 90) . Hopefully I'll still be chasing the girls then too ! :rofl; :rofl; :rofl; :rofl;
Oh Richard, without a doubt. Even if a cane slows you down :rofl;
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Well, we have to live with this disease our entire lives. There's no way out of it. The best thing we can hope for is that there will be advances in technology that will help us out