I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kimcanada on January 14, 2008, 01:34:42 PM
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Well I received news this weekend that my friend won't be able to donate a kidney afterall, there seems to be a new test that checks the antigens and something in my blood didn't jive with something in her blood...
I am out of live donor options now, and I am officially on the "list" to say that I wasn't devastated would be an understatement, I have lived my life over the last two years thinking that I would "soon" be getting my transplant.
I asked my coordinator what the approximate wait time would be , and she told me 2.5-3 years....
I hope ya all like me enough , seems I am here for awhile!
Kim :'(
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:grouphug; Sorry, but you never know what will happen. Try to hang in there.
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kimcanada, keep thinking positive, we were told the wait was 5-6 years and Len got the call in 11 months, so you never know. I pray for quick. :cuddle;
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Kim, you story is similar to mine. Five people tested and here I am still waiting. Two years on the List. They make it all sound so easy when you start the testing. I guess they don't want to tell you all the horror stories until you are farther into the process. I am sorry and I understand how crushed you feel. That is why we are here--lean on us for awhile. I am hoping you are one of the ones you get a kidney fast. Big hugs :cuddle;
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Kim and Paris,
Please don't get discouraged. The right (or left) kidney isn't ready for you yet. I know you are thinking easy for me to say, I wasn't on the list long. I was dragging my feet when it came to testing. I was very much in denial. I admire you girls. You are very gutsy. You have accepted what is happening and are coping with it. I wasn't like that until about a month before my transplant. When I was told dialysis was to be starting soon. You both are in my thoughts and prayers.
Romona :grouphug;
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Tough news Kim, please know we are all rooting for you...Boxman
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Nine people tested for Jenna. No match. That's when I began to consider the internet as a resource to find a living donor.
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I had seven people tested, and I was convinced that my brother would be a match, due to both my parents being matches previously. No such luck, and I went through the same thing you're going through now. I took a day off work to feel sorry for myself, jumped every time the phone rang for about the first three months, then decided that I had to get on with living. I know, it's very easy to say, but trust me, I've been there. Take the time you need to deal with this blow, then get back to living.
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I am at the point that I don't even think about the transplant center except when it is time to update tests. If it happens, great-but I can't think about it anymore. I cringe when people ask how soon I will get a kidney. I have to be ok if the answer is never. So, now I just don't stress about it and am working on being the best I can be right now. I will still look for solutions, but need to put it on the back burner for awhile.
Right now I am just rejoicing for Katie!! I can't believe how much you are posting. Are you resting? Take care, we love you.
Kim, you are in my thoughts--fingers crossed your wait time is short. 2008 could be your year too :bandance; :clap; :cuddle;
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It can seem like such a looooong time, but years go by faster than it seems possible. I try to stay focused on the possibility that I might get a match sooner than the 4 to 5 year wait time they told me was the average here in Michigan. Most of the time, I try not to think about it at all - it would just drive me crazy! I've got to focus on making the best of life on dialysis in the meantime - I refuse to put myself "on hold" completely, even if a lot of the things I want to do with my life are going to have to wait for the transplant.
Hang in there, and remember that it's okay to be disappointed over the loss of your living donor - just try to hold on to what hope the list can give you.
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Does the name 'Kimcanada' imply that you live in Canada? There has recently been a scandal in Canada because of the highly variable waiting times for a kidney depending on the province of the patient's residence. British Columbia has the lowest waiting times of around 2 to 3 years, but in Ontario a decade ago the average wait was already 8 years, and waiting times have been increasing everywhere since then due to the stagnant number of new kidneys becoming available, in contrast to the rising demand for kidney transplants. So you are fortunate in your misfortune not to have to face a wait of 8 years plus, as I did.
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I'm so sorry to hear your live donor didn't work out. There are so many factors that have to match, eh? I can only imagine how hard it is to wrap your head around the news. But with this disease we get a lot of practice dealing with hard stuff and then going on to live our lives with as much joy as we can muster. Hope your wait is the shortest possible and that when you do get it, your new kidney lasts for decades. :cuddle;
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Thanks for the words of encouragement everyone, I think that the biggest change is going to have to be in my thinking... I mean for the last 2 years my thinking has been.... "Just wait till I get that transplant" well now that might never come, or might be a far way away, I am 41 and have to stop waiting till "that day" and start living life again.
I have decided that my answer to "when is your transplant?" is going to be "maybe never"
My hubbie and I have been brainstorming over the last few days about any changes we should think about making, the first one might be to move closer to my treatments, I am now about 45 mins away, but in Nova Scotia in the winter it just adds alot of stress, so we will see about moving to the same town...
stauffenberg, I am Canadian, I live in N.S. I am not aware of the past scandals , I am sorry that you had to wait 8 years
P.S.
I watched a show in TV last night about a new program in the UK that they might in force that states what if you don't sing yourself as a donor... you are assumed to WANT do donate instead of what is in now, that if you don't sign your donor card it is assumed that you DON'T want to donate...
What a concept
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The legislation that has been proposed in the UK is already the law in many countries, such as Austria, Belgium, and Spain, which all have extremely brief waiting times for a kidney transplant. Anyone up for a change of citizenship? Sprechen Sie Deutsch? Habla espagniol? Parlez-vous francais?
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I am staying put.
But I was amazed with the concept, and then when they were saying how low the waiting time is in the countries that you mentioned, it was mind boggling. I wonder what the people in those countries first thought when that was passed into law. Do you know?
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Kim, one of my biggest challenges when I lost the possibility of a live donor was I had been looking at dialysis as a very temporary thing, and only paying fractional attention to the diet restrictions. Boy, was that a wake up call I could have done without! Best of luck with everything. Keep coming here to vent. We love ya! :grouphug;
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The new legislation in the UK is exactly whats needed here :ausflag; but in the paper today an article stated " That Australia would not be taking such drastic measures as the UK " What the .... we have one of the lowest donation rates in the world 140 people donated their organs last year in the whole of Australia, Something needs to be done ???
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Kim,
My hubby has been on "THE LIST" twice. He waited 5 and a half years the first time, and then didn't get a kidney from "THE LIST" (I finally -- in a miracle experiment -- got the chance to give him one of mine). My kidney lasted a little over three years in Marvin's body (of course, once I gave it, I started calling it "his" instead of "mine" -- he said it was "ours"). When the transplanted kidney contracted the same disease that destroyed his original kidneys (IGA Nephropathy), he went back on dialysis and back on "THE LIST" -- that was four years and three months ago (and, no, the time he spent waiting the first time didn't carry over because they said he did get a transplant, even though it wasn't from "THE LIST").
Over the years, we had about a dozen people tested to be a live donor for him. For various reasons, none of them worked out. My sister got to the very last test (over about three months of intensive testing -- and we thought she was the one) before she, too, was ruled out. When he went back on dialysis the second time (October 2003), Marvin took out a classified ad in 40 newspapers in our state (NC) looking for a live donor. We had 125 people -- all strangers -- call and offer to be tested. His transplant hospital wouldn't test any of them because they were strangers; the hospital said they didn't have the finances or resources to test all of these people and wondered if they had ulterior motives. They said, "What would motivate a stranger to give you a kidney?" We said, "It's a money thing? Just exactly how much do you think Marvin's life is worth?" -- and then I threw in a couple of other words that are not fit to print here. Bottom line -- his transplant center won't accept altruistic donors. Geeze, I wish they had told us that up front. By the way, our local newspaper is still running that "I need a kidney ad" after four years -- at no charge. Marvin said he gave up thinking this would work, but, he reasoned, maybe keeping it in there reminds people that more organ donors are needed. It can't help him now, but it can't hurt either. At least people who read our local paper are still talking about organ donation; maybe one person who reads that ad will be an organ donor. Marvin said if it's not a donor for him, it will be a donor for someone else like him and it will take one more person off the list and, thus, increase his chances.
Marvin has been pushing for "presumed consent" legislation here in the US for years. He likes the "opt out" instead of "opt in" aspect. He's contacted lots and lots of legislators. Sen. Bill Frist (from Tennessee and a heart transplant surgeon) seemed the most interested in it, but he let it "fall by the wayside." I think it's a controversial thing because people who oppose it say "presumed consent" is really not consent. Obviously, those who oppose it don't have a loved one on the list.
I agree with the other statements made here. You cannot let being on "THE LIST" consume you or your life. Go on living the best you can. The first time around on the list, we jumped every time the phone rang. We knew each call certainly was "THE" call. Marvin has had seven calls over the years -- he was told, "Don't eat. Don't drink. Stay by the phone, and we'll call you back." We knew each one was the real thing. Each time, the transplant coordinator called back to say the kidney either went to someone else or was damaged in the harvesting. If you let it, being on "THE LIST" will break your heart. Don't let it. Being on the list will also give you hope -- hold on to that.
For those poor ignorant people who don't know how waiting for a kidney works and who ask Marvin, "So, when are you going to get your kidney?" his answer is, "Well, they called last night, but I said I had to watch the NC State - Carolina game on tv. I told them I'd call them back Friday and see if it's still there." There are just some things you can't explain to ignorant people, and it's not worth the trouble of trying.
I'd advise that you get on "THE LIST," but remember that it's exactly that -- a list. Your name may get called sooner, later, or never. For you, Kim, and for my Marvin, and for everyone else at IHD waiting, I hope it's soon -- very, very soon.
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well said petey, except if it was thier first time asking " when are you going to get your kidney" I would have gone with the Packer Panther game...Boxman
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Petey.. Thank you, everyone that wrote can't imagine how much you helped me in a very hard time, I find that my partner is the most loving man ever, but there is some things that even he can't understand, I hope that during our time together I help someone else like you all helped me.
:thx;
Kim
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Kim, when I re-read my message (after I'd posted it), it occurred to me that it sounded like I was saying the list sucks. It doesn't. Being on the list is great. Being on the list and not getting a call as soon as you'd like...now, that sucks. I'd rather Marvin be on the list than not on the list.
Boxman --- Marvin loved your response about the Packer - Panther game. He wants to know if you'd mind if he copied it the next time the question comes up to him.
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Kim, I keep thinking about you. Time will help. I had been buying sleep pants and special things for the hospital but after a year, I got them all out and am wearing cute sleep pants all the time! I have down days when I think it will never happen, but most of the time I just don't think about it. Keep us up on how you are doing. :cuddle;
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Kim, you mentioned changes that you may be making in order to make the wait more bearable. Just be sure to take it one thing at a time and make sure you're completely comfortable with each step before taking on another. This is a stressful time (I know you know that). Take care.
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Well, here we go again
I had someone, a woman that is married to my cousin, come forward about 3 months ago to donate to me... I just heard yesterday that there was antigins (sp) I didn't mention it because I figured that I would get my hopes up again... oh well it didn't work, I still got my hopes up and now I am in the hopeless fall...
If I am ever offered another kidney, I am tempted to tell the person, thanks but no... this feeling is devastating... I hate it :'(
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Oh Kim, I'm so sorry. :grouphug;
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Kim, Otto has been on the list 2x's. The first time he only waited 4 months but we never "waited", when the call came it was a shock. He has been on the list this time now for 15 months and again we don't wait by the phone since they said we probley will never get one because of his antibodie level. We have had over a dozen people tested and at first we ALWAYS got our hopes up but now we tell people not to get THERE hopes up because they always feel so bad when there told sorry you don't match. I feel your pain It's so hard but please keep the faith and when someone offers to test let them you just never know where your "HERO" is. :grouphug;
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Hi Kim,
I am sorry to hear this but I agree with lola. You never know where your miracle will come from. Each disappointment is just a step toward your goal. Have they explored doing plasmapheresis? Hang in there and don't give up. :cuddle;
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It is important not to confuse antigens with antibodies. Every human being has antigens, which represent the immunological signature of all their tissues. While the life expectancy of a transplanted kidney is improved if there is a good antigen match between donor and recipient, for live donors antigen matches are relatively unimportant, since very good results can be obtained even if the kidney is a poor or even a zero antigen match for the recipient.
Antibodies in the context of renal transplantation refer to pre-formed antibodies to the kidney of the potential donor. If a cross-matching (as opposed to antigen matching) determines that there is a high level of pre-formed antibodies to the donor kidney, there is a danger that if the organ is transplanted into the recipient, there could be an acute or hyperacute rejection. Plasmaphoresis can help reduce the level of pre-formed antibodies, but if these still remain high, immunosuppressive induction treatment using dangerous drugs like OKT3 or some of the monoclonal antibodies can overcome this hurdle and allow the body to accept the organ.
If anyone tells you that your potential live donor has been turned down because of a problem with antigens (as opposed to antibodies), they are lying, since a zero antigen matched kidney from a live donor can still offer good results. As absurd as it seems, the ethical consensus in transplant medicine is that the morally proper response for a transplant testing team to a situation in which a live donor who is a medically suitable match suddenly loses the courage to donate is to LIE TO THE PATIENT and make up some bogus medical reason why the potential donor could not donate. This is all done to spare the potential donor any embarrassment or moral opprobrium, which for some reason is considered ethically more important than being honest with the patient to whom the transplant team owes the highest duty of care. This is yet further evidence of how stupid the medical profession is with respect to issues of medical ethics.
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I assumed you meant antibodies Kim, not antigens. Is that what they told you?
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I am 90% sure they said antigens, some "new" test... this is the second time I have heard this.
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I would ask for clarification. A donor can have a O out 6 antigen match and this is no longer an obstacle to donating.
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I am sorry, Kim :cuddle; Today someone asked me how the donor testing was going and where was I one the list. :banghead; :banghead; :banghead; I replied that I just don't think about it much anymore. No new potential donors to test (6 down) and I can't focus on something that may not happen. I understand so much about not wanting to get your hopes up. The let down is really hard. So, we'll just keep hanging out together and I'll keep praying for your turn to be next. Shall we learn to knit or crochet while we are waiting? Or take up oil painting? I am so very sorry this one didn't work out. I am here any time you need someone :cuddle;
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Kimcanada,
You are not alone. I'm on the same boat as you. No living donor. I just did make the list last month. I'm very thankful that I made the list after waiting 8 months. Now, I'm praying and waiting patiently.
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I have to tell you all something, you all have a great way to put things into perspective. When I wrote this I felt so alone and the only person in the whole world that would be going through this... thank you all for your kind words, they helped so much... Paris we are going to do this "waiting" with class my friend ;)
Kim
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:grouphug;
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we are going to do this "waiting" with class my friend ;)
You are both incredible.
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Hello my Canadian hockey friend,
I'm so sorry to hear about your disappointing news. You are in my thoughts, and I will be hoping good news for you EVERY DAY!
Keep your chin up . . . you never know when the phone will ring with some terrific news on the other end!!!
:cuddle;
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Thanks Psim & MRR,
I feel better already, well getting there, I mean you know how you should feel, and why you should feel the way you should, just sometimes your feelings get in the way of that ;) :banghead;
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kimcanada, keep thinking positive, we were told the wait was 5-6 years and Len got the call in 11 months, so you never know. I pray for quick. :cuddle;
That's is encouraging! :) :thx;