I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on September 11, 2010, 09:23:37 PM
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I really don't know what's wrong with me lately; I have been in a mood most foul. I would love to hide under the covers for just a while so that nothing else bad can happen...you know what I mean? And here on IHD, so many of our members are struggling through all sorts of obstacles; I'm sure many of you would love to escape from it all for a while.
We all try our best to see the positives and to remain optimistic. Well, sometimes I just can't manage that, and when I can't, I throw a pity party complete with several bottles of whine. :wine;
Sometimes whingeing and whining really does cheer me up. I usually get so tired of hearing myself whine that I shut myself up so that I will stop annoying myself. So if you have a minor whinge you want to air, this is the place to do it. Serious issues should have a thread of their own, but if you don't have a safe place in the real world to be annoying, come to the pity party.
Edited: Moved to Dialysis: General Discussion - okarol/admin
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I have so many, I prefer to keep them to myself. I've gotten myself in trouble too many times by voicing some of the things that swirl around in my brain. I know that most of what swirls in there is paranoid delusion, but it is what causes most of my "moods." Recognizing the problem is half the solution, right?
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well, I feel like whining with you! Life just flat out sucks sometimes, I mean, I'm glad I am alive, but why does everything have to be so f-ing hard!? I a having a glass of wine to wine to, lol - I get it. I know there are a lot of people who have it worse then my family, but damn, sometimes I wish things would go my way for a change!
There whine over. I feel a tiny bit better! Good thread. I hope it doesn't offend anyone!
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Oh MM, I am so sorry I cant come, you see, I have just had my own pity party. After the nuclear stress test, they discover I have a 75% blockage in the left ventricle ( or somewhere around there). So, now, I have to have an angiogram. Isnt one part of your body being in bad shape enough for one person? So, now, its kidneys, heart and back. I am sick and tired of being sick and tired. But, I sat in the shower and had a long chat with my father and let the tears roll, and i feel a whole lot better now. That works better for me than wine, as wine gives me a bad hangover, while I am drinking it even. LOL
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No wine, just whine and chocolate for me, please.
Really, I shouldn't have any reason to whine, right? I've got my working transplant; my new place is lovely; my classes are interesting; thanks to my little nest egg I inherited from Gram I no longer have any serious financial worries; my hair has even mostly grown back. While my weight is still bouncing up and down with the prednisone, at least it's staying close to a reasonable weight and not shooting into the stratosphere anymore. What could I possibly have to whine about, really? Well, other than the giant freaking divot in my gut that makes me cringe every morning when I get out of the shower. I am so tired of being UGLY. I can't even call to make an appointment with the plastic surgeon until November, for an appointment to be scheduled in January. It's been over a year and I just want to look normal, at least with my clothes on and without the giant bandage/tummy shaper I have to wear daily to be comfortable enough to move around. That's it though - the only thing I really want to whine about.
Well, that and the fact that my partially deaf downstairs neighbor has hung a million wind chimes so she can hear them. Auuugh!
Okay, done now. Next person's turn!
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I'm cold, because Hurricane Earl blew summer away.. *sigh* If I was rich, I'd move to a warmer climate
I also think I've killed the trivia and guess the lyrics threads cuz no one seems to want to google with the clues I've given
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There whine over. I feel a tiny bit better! Good thread. I hope it doesn't offend anyone!
Oh no, I don't want to offend anyone! I just want to give people the opportunity to poke fun at any less than significant worries. We all know about our big worries. I sometimes find that I expend so much energy dealing with the big stuff that there's little left with which to combat the small, irritating stuff, and the small, irritating stuff gets bigger than it should get. So this thread is to diffuse that, if possible.
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Jean, I know you are going through a rough patch. Sometimes a whine is not enough, rather, only tears will do. :cuddle;
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Absolutely!!!!
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We all get that life is unfair - it's just that once in a while, couldn't it be unfair in our favor? :P
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i know just how you feel. however, the problem with hiding under the covers is that sooner or later the world comes to stand at the bottom of the bed and yells at you. then again we all deserve to hide now and again. we all need to vent every once and awhile, have a good go at it. :grouphug;
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Yesterday I felt so nauseous I did hide under the covers.
When will this ever end? Sometimes when I'm feeling physically lousy it's all I can do to get up in the morning.But I keep plodding away never giving up hope --- yet! I just want to be normal again.
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Yesterday I felt so nauseous I did hide under the covers.
When will this ever end? Sometimes when I'm feeling physically lousy it's all I can do to get up in the morning.But I keep plodding away never giving up hope --- yet! I just want to be normal again.
Yes, I know just how you feel. Lately I've been bothered by nausea on and off, and when you don't feel good, EVERYTHING is difficult, even having a shower.
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Even though I have my own crosses to bear- I do get a lot of my courage from the people here. You'alls daily struggles make me try harder. I am in awe of most of you.
glitter/julie
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I am tired.
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I'm joining the pity party for just a few minutes. Reading that article karol posted about the lack of organ donors in oz got me down. Not because that's new news, but they claimed in the article the average wait time for a kidney is 3.8 years. Yeah, well I'm over 4 and a half years waiting.... Guess I'm just not very average.
However in better news I was in Brisbane the other day for a quick break in the sun and I was upgraded to an executive suite at the hotel. Score!! We could have a mega party in that room, and as for the jacuzzi... well..... >:D >:D >:D >:D
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Aww Richard, I was hesitant to post it. But the news is not always accurate, and I am hoping your kidney comes soon. Good to hear the better news - I am always up for a party! :cuddle;
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Its ok to have a pity party when you hear bad news like from bad labs or just life in general. I set a time limit for the pity and get up and go again.
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I've been waiting 6 and a half years for mine, Richard, and I was told that the average wait time is 5 years. When my mom asked the Transplant coordinator why it's taking so long, she told Mom that my blood type was too common. What the hell does that mean??
I'm also sick of people telling me that I should be happy because I look healthy, and generally, I do feel good, but that isn't the point. I am still sick. I"m also sick of people telling me all the stuff I should be doing, like I should be going for walks twice a week, or I should be going back to school, or I should get back into writing, or I should get into volunteering so I can get out of the house. I don't feel like doing any of that stuff. My best friend, I love her to pieces, she's like a sister to me. The other day she told me that I should start looking into university again, and I almost said that I should pull my blanket over my head and wait for the inevitable to happen, but I stopped myself, because I knew that would upset her.
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But, I sat in the shower and had a long chat with my father
You took a shower with your Father!!!???????
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wait wait "You should be happy because you look healthy"????
W... T... F??????!!!
:urcrazy; :boxing;
Yeah I am sure there are people walking the streets who are HIV+ or have cancer and "look healthy" so they should be happy?!!! OMG? So if I look like crap I'm allowed to be unhappy? wow some people are truly bizarre.
Wait if I put on a dress and lipstick does that mean I should get a sex change??? :puke;
I think saying your blood type is "too common" is just saying that, say like me you're A, which is pretty common, than the number of donors, in theory, should be greater HOWEVER that is offset by the number of recipients which will also be significantly greater. Now if you had a 1:1 relationship between donors and recipients - as in all things being equal - then that wouldn't be an issue, but donors are in short supply, thus there will be more people wanting kidneys in that blood group compared to say a rarer one.
Or let me put it this way with an example using some numbers. Let's say blood group A is 40% common, so 4 out of 10 folks are A. Let's say O is 50% and let's say B is 10%. Further let's say there are 100 people on the waiting list, and 2 donor kidneys show up. Now if all things were equal, you'd have a 1 in 10 chance if you were one of the ones waiting right? Let's say the averages hold. Let's say one kidney is type A and one is type O. (I'm going to ignore that O is the universal donor or whatever).
So of that 100 people waiting, 40 are A, so they can match to that one kidney. YAY! 50 are O, so 1 in 50 has a shot at that one matching, and those 10 with B blood group, well they're out of luck totally. So in this example the O's are at a disadvantage to the A's because they have a 1/50 chance of getting the matched kidney, vs 1/40.
That's a very simple example, but I hope it illustrates what I'm trying to say about the commonness. Sadly, all about supply and demand.
I'm A, and I read somewhere it's pretty common. My brain says the stats say 37% or some odd number like that. I believe B (or is it AB?) is the rarest.
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My basement still stinks because of whatever died between the walls.
I have an appt with my neph tomorrow, and I'm really nervous. I hate this feeling.
I miss my mom.
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"Be happy cause you look healthy."
Ummm, sorry - it's beauty that's only skin deep - not health! :banghead;
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No, Ken, not my father, my Father. God. That Father. He doesnt talk much but he is one darned good listener.
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I think saying your blood type is "too common" is just saying that, say like me you're A, which is pretty common, than the number of donors, in theory, should be greater HOWEVER that is offset by the number of recipients which will also be significantly greater. Now if you had a 1:1 relationship between donors and recipients - as in all things being equal - then that wouldn't be an issue, but donors are in short supply, thus there will be more people wanting kidneys in that blood group compared to say a rarer one.
Or let me put it this way with an example using some numbers. Let's say blood group A is 40% common, so 4 out of 10 folks are A. Let's say O is 50% and let's say B is 10%. Further let's say there are 100 people on the waiting list, and 2 donor kidneys show up. Now if all things were equal, you'd have a 1 in 10 chance if you were one of the ones waiting right? Let's say the averages hold. Let's say one kidney is type A and one is type O. (I'm going to ignore that O is the universal donor or whatever).
So of that 100 people waiting, 40 are A, so they can match to that one kidney. YAY! 50 are O, so 1 in 50 has a shot at that one matching, and those 10 with B blood group, well they're out of luck totally. So in this example the O's are at a disadvantage to the A's because they have a 1/50 chance of getting the matched kidney, vs 1/40.
That's a very simple example, but I hope it illustrates what I'm trying to say about the commonness. Sadly, all about supply and demand.
I'm A, and I read somewhere it's pretty common. My brain says the stats say 37% or some odd number like that. I believe B (or is it AB?) is the rarest.
That's a good way of explaining that. Thanks. I'm O+, and I've been told that it is one of the most common types. I've never actually researched it, so I"m not sure if it's true or not.
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Wikipedia has a big table showing the averages in the population by country:
http://en.wikipedia.org/wiki/Blood_type#ABO_and_Rh_distribution_by_country
Interesting reading. If it's accurate, and I'd take a stab that the figures are in the ballpark, then 37.4% of Americans (and 40% of aussies) are O+, just ahead of A+ (which is me) at 35.7%(US)/31%(AU).
As an interesting cultural difference, in Hong Kong only 10% are O+ while 27% are B+(much more rare in the western countries).
The most rare is AB-, just 0.45% of the world population.....
Therefore maybe you should move to Hong Kong! I know a great restaurant in Mody Road..... :)
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I always feel better after a good whinge. I think it's a neglected form of therapy that could be used more often. My favourite whinge is the Government because it can last as long as the next election. I love whinging about my prostate problem but i must admit it is a real conversation ender. I could go on, but what's the use...I can tell you're not listening.
.....sigh.
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I got in a bit of an argument with my best friend last night. She says that I spend way too much time online and in bed. I know she's right, but she nags me about it, and I don't think she realizes how much it upsets me. I don't really want to tell her either, so I'm kinda stuck in a cycle of her saying I need to do this or that, and me biting my tongue, so I don't yell at her and wanting to hide under my blankie some more
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I got in a bit of an argument with my best friend last night. She says that I spend way too much time online and in bed. I know she's right, but she nags me about it, and I don't think she realizes how much it upsets me. I don't really want to tell her either, so I'm kinda stuck in a cycle of her saying I need to do this or that, and me biting my tongue, so I don't yell at her and wanting to hide under my blankie some more
Ask her to schedule something fun, that doesn't over strain a budget constrained by medical expenses, that doesn't involve a lot of physical activity that will make you violently ill the next day or exhausted for days after, that fits around a dialysis schedule, that doesn't expose you to temptations of food or drink that you can't have on your diet, that doesn't use up the little time you have when you are feeling well that you need for absolutely necessary chores, and that can be canceled without cost at the last second if you are too sick to go - and you'll be there.
I've never yet heard of case where nagging cured chronic illness or the depression that goes hand in hand with it!
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I got in a bit of an argument with my best friend last night. She says that I spend way too much time online and in bed. I know she's right, but she nags me about it, and I don't think she realizes how much it upsets me. I don't really want to tell her either, so I'm kinda stuck in a cycle of her saying I need to do this or that, and me biting my tongue, so I don't yell at her and wanting to hide under my blankie some more
Ask her to schedule something fun, that doesn't over strain a budget constrained by medical expenses, that doesn't involve a lot of physical activity that will make you violently ill the next day or exhausted for days after, that fits around a dialysis schedule, that doesn't expose you to temptations of food or drink that you can't have on your diet, that doesn't use up the little time you have when you are feeling well that you need for absolutely necessary chores, and that can be canceled without cost at the last second if you are too sick to go - and you'll be there.
I've never yet heard of case where nagging cured chronic illness or the depression that goes hand in hand with it!
I think that if I was able to do more than talk to her over IM, I'd hide any crappyness caused by dialysis or otherwise to see her. She lives in New Jersey, I live on Prince Edward Island. I see her once a year. She was doing it again tonight, though, saying that I need to start walking
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Yes, but when you're spending all that time in bed... she doesn't know if you're alone or not does she??? >:D >:D >:D
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Riki, I'm not sure how much your best friend really understands the demand of D on your life; she may truly not get that you don't feel like walking. I don't know your friend, but I'd guess that she wants to help you and may worry that your blankie-hiding may be a sign of depression. Most people find it hard to just stand by and watch their best friend suffer; she probably wants to "fix" things for you, and this is the only solution she has come up with.
Like you've said, she may be right! Do you think that a short walk each day might actually give you some energy? After a while, lying in bed actually can become enervating.
If you do not tell her, of course she will not realize how much her nagging upsets you. She can't read you mind, and perhaps her crystal ball is broken. :rofl; I personally have found it really hard to ascertain what exactly I want from other people. Maybe if you could decide what exactly you want your friend to provide you, then you could tell her..."I just want someone that I can talk to", or "I'd like to be able to take your advice, but right now I just cannot." I'm sure she would LOVE to know exactly how best to help you throught this difficult time, but you may just have to tell her. :cuddle;
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My hand are covered with ant bites and its itching like crazy. Went to feed the dogs and reached in and grabbed the scoop, when I took it out the container I had ants crawling all over it. D**N, Somebody forgot to close the $#@!& container all the way. It couldn't have been me I wasn't the last one to feed the dogs. >:(
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I've done something to my left foot. It is so sore and stiff in the morning. Once I start walking around, it eases up, but I can't figure out what the problem is. Could I possibly be just getting old? Naw, that CAN'T be it... ::)
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aaahhhhhh I can't stand it, the ant bites are begining to bother me and I need something to relieve the itching. :(
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Riki, I'm not sure how much your best friend really understands the demand of D on your life; she may truly not get that you don't feel like walking. I don't know your friend, but I'd guess that she wants to help you and may worry that your blankie-hiding may be a sign of depression. Most people find it hard to just stand by and watch their best friend suffer; she probably wants to "fix" things for you, and this is the only solution she has come up with.
Like you've said, she may be right! Do you think that a short walk each day might actually give you some energy? After a while, lying in bed actually can become enervating.
If you do not tell her, of course she will not realize how much her nagging upsets you. She can't read you mind, and perhaps her crystal ball is broken. :rofl; I personally have found it really hard to ascertain what exactly I want from other people. Maybe if you could decide what exactly you want your friend to provide you, then you could tell her..."I just want someone that I can talk to", or "I'd like to be able to take your advice, but right now I just cannot." I'm sure she would LOVE to know exactly how best to help you throught this difficult time, but you may just have to tell her. :cuddle;
She knows how dialysis kicks my ass She's seen it first hand. I do know that she's worried about the possibility of depression because she's mentioned it to my mom, who brushes it off. She thinks I should go out more, because I rarely leave the house. That's something that's not new. Even when I wasn't on dialysis, I didn't leave the house much. I like being home. I think was bothers her most is that I've stopped writing. I can't explain that one. I always wanted to be a writer, from the time I was a kid, but I was discouraged from the practice by my dad, who basically told me I wasn't good enough and to find something that would bring in an income. The way she put it was, that it was my dream, and it looked to her like I was giving up on it. I don't know if that's what I'm doing or not, I just know I have no motivation to work on the book I started last November
Everybody has that one friend that they tell everything to, and for me, it's her. We've kind of been that for each other. Perhaps she sees a change in my that I don't see, or that my mom doesn't see and that's why she's telling me that I need to do all these things. I just don't want to. I don't know why I don't want to, I just don't.
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I am back at the pity party.
I was just on D. The guy sitting right in front of me.. HE GOT THE CALL! I mean.. REALLY! I thought I'd never see it for real ... it happened.
I was SO HAPPY and SO EXCITED for him.. amazing.
Then someone asked him his blood group. A+ That's my blood group. I then foolishly asked him how long he'd been on the list waiting for the call. He said 3 years.
I've been waiting over 4 and a half years.
I feel totally churlish (I hope that's the right use of that word) but I was a bit sad. I mean totally rapt for him. The best match for him came along and he got the call.. clearly that kidney wasn't a good match for me (interestingly he didn't even ask what kind of match it was or anything - and I thought of that other thread on IHD about 'what do you ask?' - I think like the rest of us he was too surprised to ask anything!). Still I felt sad thinking "what about me?" why do I have to keep waiting? I'd been told that I've matched organs before... and then I feel bad for feeling that way. It's not that I'm jealous of him, or dn't want him to have it or anything like that... it's just like... I feel like I've come so close... and it's been denied. And I know that isn't very reasonable, but I still feel down about it. I know that too is normal and understandable, but I am having a bit of a pity party though.
I did, however, buy myself a lotto ticket with today's date and time he got the call as numbers... lol
I really hope it works out for him and the kidney works straight away!!! Really I do (yeah that means he's definitely off the list being ahead of me!).
It's a beautiful day and I just feel let down.. like I just got dumped or rejected by a girl or something.
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I haven't heard of a transplant for anyone around in ages. the unit is small, so if there was one, I'd probably hear about it. I'm starting to wonder if they even do transplants anymore
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Didn't win anything from the lotto ticket either. :rofl;
Today is 10/10/10.
I want a bloody kidney so it's an easy anniversary date to remember! :rofl;
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Oh Richard, I do understand how you feel. Happy for the other person, sad for yourself, guilty for feeling sad for yourself. All sorts of feelings all at once, all of them perfectly valid. You sit there and wonder, "Am I ever going to get that miracle? Will something that wonderful ever happen to ME?" Yes, "churlish" is a word, and no, you are not being churlish. Not in the least. I think anyone who is in your position and claims never to think, "What about me?" is lying.
Riki, you bring up a very good point. Maybe your friend DOES see something in you that you do not see yourself. She may be one of those people who wants to fix things for you and can't really do anything except encourage you to do this and do that when you don't feel like doing this and certainly not that. Maybe you could ask her what she sees. A different perspective is usually helpful. She probably does see your writer's block as a sign of depression and is worried. Maybe you could think more deeply about why you have stopped writing. If you are just not in the mood, that's fair enough. Or if you are not motivated to continue the book you started, maybe it's time to dump that project and start a new one?
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I was going to have a whinge about trying to 'garden' and how hard it is, since I seem to have developed a hernia (or two!) and am being SO CAREFUL not to lift anything. Then I read Richard's post - what a difficult thing to experience. I can only imagine feeling the 'why not me?'. And I don't think 'churlish' really would describe how you felt, Richard - Google gives the meaning as 'rude in a mean-spirited and surly way'. Somehow I can't imagine that description would fit you. If it happened to me, I'd probably just cry!!!
:rant; My family keeps telling me how well I look, and I do, but I think they assume I'm cured. We are a very close family and all get along, however only one sister has made enquiries re being a donor and two have refused. I sort of wish more of my family (cousins, nieces, nephews etc) were lining up to be tested for me - I'd like to think that is what I'd do if the situation was reversed. Then I'd know I have backup for when my health starts to slip. When I think about all this, I feel sad and greedy at the same time. Is there a word for that?!
I love when dates make mathematical music, as in 10/10/10. I also get a buzz when I look at a digital display clock and it says eg. 11:11. Small things, ah?
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i think these are all perfectly valid reasons for pittypartying for sure... I have to say though RichardMEL, that your news even felt like a sock in the gut to me. Not a' fair or unfair' , just a whole twisted painfull(yet still happy for him) sence of WHY?? I just deleted alllllll else of what i had to say about it as it was truly complaining big time, but i am hoping there may be some valid answers on why 'your' waiting longer than someone else. DOGGONIT!! I can only send some hugs and hope that all the support you get here at least helps ya..
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Bummer, Richard.
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Thanks guys for the support. :)
I did feel churlish, and in exactly that way, because I did blurt out a rude comment when he said 3 years - something like "wow I've been waiting longer than that!" and then I instantly felt bad for being so sort of selfish and I think some people might have felt that was mean spirited and everything. I was very quick to be very happy for him (and sincerely so!) and I don't think HE thought I felt ill towards him because of his miracle, but some of the nurses maybe. They were like "oh you will be next" (yeah well they've been saying that for a few years now!).
I am feeling better about it today though. I mean that's life. Just have to suck it up and wait - as usual.
It WAS so cool to actually witness that though. I've always wondered what it would be like.. because he was right in front of me I pretty much witnessed it.. I mean I wasn't listening in or anything.. I sort of noticed one of the nurses on the phone then I thought it odd when she handed the unit phone to him but you know I didn't listen to what he was saying or anything (I was watching my laptop) but then I heard someone say something about transplant, so I did pay more attention and yeah. He was quite calm about it all (though his BP betrayed him a bit :rofl; but then so did MINE!) but he didn't rush to call anyone, he just sat there waiting for his session to finish. They came around and said good he's here they took blood wanted some swabs of his nose or something(?!!) and yeah it was all very calm. About the most exciting thing was when he said "oh can you call the company for me - I have a delivery of supplies on Tuesday - guess I won't need that now!" :rofl;
He took FOREVER to clot - like I reckon 20 mins each site, and I thinking "holy crap I'd be just itching to get up, get up to the ward, whatever!" but he was very calm and mnatter of fact.
I wonder how I will be.
Well I will text someone to post on IHD of course if I can't!!!
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Richard, I've gotten that call twice. You're excited, and you're scared. Your head spins a bit, and I think I cried a little.. *L*
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I think the nurses would love to see me cry :rofl;
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Richard, I hope you don't mind me asking, but I've been wondering this ever since I read your post yesterday...WHY are you still waiting? You've said that you've matched kidneys in the past, but you've still been denied...why? I don't really know enough about this, I guess; I mean, I understand about the antigens, but what other factors are in play that determine that your clinic-mate was a better match than you? Are you just especially unique or something? :rofl;
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I am having a pity party tonight. My arm is sore. I am trying to come off the Tylenol III pain meds. I am pretty miserable. I hate this damn thing in my chest. My arm looks like a shark bit it.
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Richard, I hope you don't mind me asking, but I've been wondering this ever since I read your post yesterday...WHY are you still waiting? You've said that you've matched kidneys in the past, but you've still been denied...why? I don't really know enough about this, I guess; I mean, I understand about the antigens, but what other factors are in play that determine that your clinic-mate was a better match than you? Are you just especially unique or something? :rofl;
Well that's the million dollar question isn't it? I wish I had an answer but I don't really other than to say that the co-ordinator told me a year or so ago that I matched for organs previously, but the organs had obviously gone to people higher up the list (ie: longer wait time). So near as I can figure it it's one of two scenarios:
1. I'm so dirt common with my antigens that there's a bunch of people who are basically the same, all queued up, and there are still folks waiting longer than me. This implies that the guy who got the kidney on Saturday has more rare antigen match than me (though from what I could tell he was just as caucasion and middle aged as I am :rofl;)
2. I'm so bloomin unique that there just aren't many antigen matches for me thus I have to wait longer - and there may or may not still be people ahead of me (ie: waiting longer). That suggests Saturday guy was common and boring :rofl;
As I understand it, the way the list works down here is that it is first matched on blood group, then on the 6 antigens, then it is weighted on time waiting on dialysis. There are *rumours* that they also weight on age, with the idea that younger people might have a slightly higher weighting than older, but I've never actually heard that confirmed (and it may have just been told to be my nurses trying to keep me positive...). I think the only time that might be broken is if there's like a 6/6 match, but as we all know that's rare enough to not really be considered.
I mean I guess I have to remember that when they quote an average of "4-5 years" waiting time (I'll be 5 in January) that consists of folks getting a call after 6 months, 2 years, 3 years and then on the other end, 7, 9 and 11 years...... That's why it's called an average.
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I'm really sorry, Richard. If you were in the US I'd suggest you look into getting listed at more than one transplant center, but I don't know if that's allowed in Oz.
Most transplant centers here will move someone to the top of the list if the kidney is a 6/6 antigen match. Maybe that's what happened.
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In Australia we just have the national list, so it doesn't, in theory, matter where you are (as in what hospital/renal team).
However in practice I believe what happens here is that the co-ordinating authority (Red Cross) run the list when an organ comes up and figure out who the best matches are. Now they don't actually contact the potential recipient, they call the renal team responsible for that person. It's then for that team to decide if they will accept the kidney for their patient or not.
Now what I have been told informally, which makes some sense, is that some teams are more conservative than others - so that some places may accept a kidney that others wouldn't just on the basis of the doctors making the evaluation. It's been suggested to me that my hospital is more conservative - well they can't be THAT conservative if they accepted the kidney last Saturday!!
Anyway I made some discreet enquiries when I was at dialysis and it seems that the transplant went well and the kidney is already producing urine and he is doing well, though in some pain and having some issues with the meds. I have no idea what sort of match it was or anything about the donor - I am not certain our nurses would even know that (my usual informant who used to know such things left our unit).
I'm absolutely stoked for the patient that it's working for him - hopefully for a long time. Maybe it was indeed a 6/6 match. I may never know. It actually may not help if I ever did find out. I mean say I hear it was a 2/6 match or something - I somehow think that might make me feel worse somehow. Still, I am seeing my neph next week, and he happens to be the head of medicine for the hospital as well as head of renal, so he would know what the deal was with the transplant (maybe not the exact matching situation).. I might just mention it to him - more in the context of my feelings rather than whining "why not me???"
anyway like I said.. happy for the guy - hey at the very least he's one more person ahead of me that's off the list :)
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I think one of the factors here when deciding whether or not to call the patient, is how long it would take for them to get to the transplant centre. The last time I got the call, it came at 3 in the afternoon, and I was told that I had to be there by 9. I couldn't find my parents, cuz it was Victoria day, which is opening day for stock car and drag races, so they were at the track. They didn't have a cellphone, and nobody was answering the phone at the track. Took me and a friend of theirs, who lives nearby, 2 hours to find them. But once we did, Mom came and got me, and she dropped me off at the door right at 9. I didn't have the transplant till 5 the next afternoon.
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well it's OK I live right over the road from the hospital :)
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I miss my Dad. He will be gone 1 year on 11/29/10. He was only 67 and we were best friends. I'm so tired of going to D now. I have only been on it since May of this year, but I'm tired of the time away from home.
I work full time, but there are at least 2 days a week, when I just want to stay in bed and not do anything.
Tired of being tired, for sure.
OK, thank you so much for listening! Hopefully getting it out here will help me not vent somewhere else. :thx;
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I'm tired of living in a crap hole. If my dad wants to sell it, he should come here and do the work that needs to be done instead of going kayaking. We no longer have a furnace, because it died over the weekend, and it's going to go below freezing tonight, so Mom and I are going to freeze to death while Dad is nice and toasty warm in his house where the rent is less than the mortgage payment on this place
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It isnt enough that I went thru the stress test and was told I was in such bad shape and then had to have the angiogram, which showed I am in great shape, some time during this period, I stubbed my little toe.A couple of days later, it started to hurt so I looked at it. Not an easy position to get into you know, and discovered it was completely black and I may add, very painful. Went to the Dr and he said it is a blood blister with a pus blister on top of it. He put me on antiobiotics and gave me a tube of lidocaine for the pain. Have to say, if I had a choice between having a baby and this toe, I would rather have the child. The lidocaine helped a lot, but it is still quite painful and difficult to walk on. Enough is enough already!!! One week of no more difficulties with my help would be a great boon right about now. Otherwise, I am just going to sit and pout!!!
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I agree. Enough is enough! Hope your toe improves. I have sciatica in one leg that is giving me hell and the GP doesn't seem very interested. Am hoping maybe some physio will help.
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A blood blister with a pus blister on top? Jeez, Jean, I don't think I could have made that up! I know it's painful, but it's one of those things that just make you go, "Really? REALLY???"
I'm still amazed about your whole stress test story. I can't believe that happened to you. Still, you're good and healthy, and I guess that's the best thing. But REALLY??? ::) ::)
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I will gladly trade my period for being able to pee again. Is that even possible?
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Love the idea of the swap, Riki!
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I will gladly trade my period for being able to pee again. Is that even possible?
This made me laugh. My ob/gyn told me that she takes that pill that you take all year, and she has a period only once a year. She says that when she does have it, she just freaks out, and that's coming from a GYN!
Sorry to the male-type people of IHD.
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I'm sure MOST women would be happy to give up their period .... well.. period!! lol
I found out something the other day that upset me a little.
Going back a few pages to the other week when I was sitting in D and the guy in front of me got THE CALL. We all kind of celebrated and were so happy for him etc and it was quite the atmosphere.
So a nurse came to me the other day and quietly told me in confidence that, and I had no idea, that there was another patient just on the other side of the guy who got the call - and this gent had apparently recently received a transplant and it had failed after 3 months. and all of a sudden I felt like the lowest of the low. How would have that man felt listening to all of these cheery happy congratulations and talk??? I can't imagine.
It reminded me of why transplant is often not discussed aloud in our unit, and even when they do stuff like transplant bloods(had mine taken yesterday) it's done very sort of circumspect and not really talked about - and you can understand that when there are any number of patients - mostly older - who can't even receive a transplant, and you need to be sensitive to their feelings and stuff.
It brought me down to earth a bit.
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Richard, I think about that very thing a lot. You are right...that gentleman with the failed transplant must have felt terribly sad. Maybe you could find out for us if he might get another chance?
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Richard, I think about that very thing a lot. You are right...that gentleman with the failed transplant must have felt terribly sad. Maybe you could find out for us if he might get another chance?
I presume he goes back onto the list. A few years ago, on new years day 2008 actually, a guy I met in the unit got the call!! He was (is!) about my age, but he has a young daughter, family etc.. so it was awesome.. until his transplant refused to work, and in the end they had to take the kidney out. That was so sad for us all... but just six months later he got another one, and that one has stuck (as far as I know)....