I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LightLizard on July 20, 2009, 06:58:49 PM
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so, they finally called me, after two years on dialysis, i was contacted by the transplant team in vancouver, st paul's hospital, where they do the transplants for this region. they called me to come in for an interview to see if i am a good prospect for a transplant. after several hours travel by bus and ferry, we made it to the hospital for the 5 hour interview. (actually, it was less than that, but with the waiting time it all worked out to a 5 hour hospital visit.) the consenus is that there's not going to be any forward movement for me, as far as a transplant goes, until the issue with my heart is resolved. my cardiologist insists that he cannot perfom the surgery i need until i am in crisis. ('tightness in the chest, shortness of breath, dizzy-ness' until i am showing these symptoms, he will not cut me open.)
so basically, i'm deciding against a transplant alltogether. to hell with it. i'll just survive as long as i can on dialysis, and maybe the AWAK (artificial kidney) or stem cell therapy will be my final answer. maybe not.
besides, i'm 60 now. by the time i get a transplant i'll be 63 - 65 and then i'll get cut off of disability. with no income and no skills to market, i don't really relish the though of living on the street for my remaining years.
in the meantime, i'm trying to recover from this horrible lung infection that i aquired shortly after the trip to vancouver. it's been almost three weeks now and it's the worst lung infection i can ever remember having in my life. kind of scary, really, because i know that this is the kind of thing that kills we dialysis patients.
anyway, there is my update.
happy summer!
:)
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I can't say anything profound or helpful but here's a big hug. :grouphug;
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Thinking of you. How are you coping with the thought of no transplant? I'm a non-transplantee for the forseeable future. I think I'm pretty used to it now, but sometimes have days where I just let it all out. Don't forget you're allowed to do that too!
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I am so sorry for the disappointment you went through after all the hope and effort you put into seeing the transplant team in Vancouver. I hope with you that soon the research into stem-cell-therapy might bring a lucky breakthrough, or another new treatment might be found. I wish you a good recovery from the lung infection and send you my best wishes and kind regards, Kristina. :grouphug;
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Oh LL-take care of yourself- the world would be a poorer place without you- and its so good to hear from you- even if your news is not grand. I hope your up playing beautiful music in no time. :grouphug;
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thanks all. much appreciated sentiments indeed. :flower;
it's funny, kind of, because initially, i was oppossed to getting a transplant in the first place. but, after a couple of people offered me a kidney i began thinking about the possibilities of having more energy and i started to like the idea. then, the team called and my hopes grew a little higher.
they say that in sept of 2011, the new AWAK kidney will be available for use by the public. the trials are going good, they say, and everything is on schedule, so far. so, this, to me, is the best hope for myself and i'm sure, many of us.
other than that, as long as we stay infection-free and are consistent with our dialysis, we can have a reasonably happy life.
wishing you all the best of what you need and many happy, pain-free days and nights!
love
LL :guitar:
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Hang in there, I feel the same about losing the disability...Boxman
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:grouphug;
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Oh LL-take care of yourself- the world would be a poorer place without you- and its so good to hear from you- even if your news is not grand. I hope your up playing beautiful music in no time. :grouphug;
thanks glitter. in case you don't go to the 'spouses and caregiver's' board, this is for you..
http://www.youtube.com/watch?v=6JvOnnqGqgg
:waving;
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You can come sit in the "No transplant corner" with me. It hit me with a bang a few days after I had to make the decision not to move forward with one.
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thanks kitkatz. really, when i think about it honestly, when i was in my 20's i really didn't expect to live past my 50th year, so i've really got nothing to crab about- so many of my old friends and musical partners have left the building, so what's the big deal about this life thing anyway?
:rofl; :beer1; :waving;
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LL, Whatever decision you make, we support you. You give us so much beauty with your music, we just want you here with us. I'll keep you in my thoughts. :cuddle;
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thanks paris. you and some of the other folks here, on this thread, are the ones that make me want to stay here, regardless of the insane and unreasonable ones that attack for no reason other than their own insanity. i don't want to be a scapegoat for the losers of the board, but that seems to happen too much for me here.
it would be very nice to find a support group of some kind, but i do not see that happening online for me, especially with the few idiots that seem to be allowed free reign here. maybe if i was an american it would be different.
it's just too easy for losers to hide behind a computer screen and lash out at anyone and everyone when they feel like it.
if anyone wants to meet me face to face and test my martial skills, they can PM me and we can set up a meeting. i have taught the art of killing with the hands and feet for over 30 years and i am not interested in hiding like a coward behind a computer screen as much as i am interested in 'hands on negotiations'. bring it on, losers, or shut the hell up.
to the rest of you good folks, take care. thanks for your decency.
LL
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Go LL - tell it like it is!
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Well LL i've nothing to say about the transplant except ..bugger!
The chest infection, well a bottle of whiskey should cure that ! :rofl;
If you are not American ,what are you (not what are you) where are you from? I always presumed you were American . Im coming to sit in that corner with you and kitkatz because i dont think a transplants for me! (so wanna share that whiskey?) :2thumbsup;
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crack open that bottle KICKSTART, and we'll party hearty! (once i finish my antibiotics that is, one day to go!) i'm canadian. originally born and raised in toronto, ontario. been living on vancouver island since 1988, and just loving it!
and thanks Hanify. i have decided to stay. why let one bent loser rule the board when there are so many good people here to talk to?
isn't it strange how some think that their experience of kidney failure is so much more valid than anyone elses'? humans really are a fascinating species, in many ways. in other ways they can be quite disgusting, too. so, to anyone that wants me to leave; i'm not leaving. :sir ken; pick a cheek and pucker up. :)
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:2thumbsup;
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Sorry to hear the transplant opportunity doesn't appear to be there for you. But I think you're right in that you can still lead a pretty good life without it. You've already made it to 60, and I'll bet with your attitude you'll make it a lot farther. Hang in there, we're all in this together.
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thank you Sunny. you definitely brightened my day!
love
LL :guitar:
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I am the bent loser the Lizard is talking about... Just wanted everyone to know in case you didn't Paris and Hanify and Okarol...See Kickstart"s post "I can't believe what I just read...
Happy to meet face to face. Which face do you intend to use?
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are you gonna stalk me now, troll?
hungry for attention are we? you don't have to say anything on this thread. but then, of course, you can't help yourself, being depressed and all.
:rofl;
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Come on you guys quit it. LL you can't go talking about people like that and not expect them to respond, and Dan you are a stirrer (but I still love you) so I'm going to officially smack both your noses with a wet newspaper!
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interesting isn't it, how every single thread he goes on becomes about him?
i won't be leaving anytime soon, so don't get your hopes up.
:beer1;
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Transplant is just another form of treatment for kidney failure. For a lot of people it is a much better type of treatment but for some they have more issues after having a transplant than they did with dialysis. My husband has chosen to not even consider a transplant yet. That is his choice after talking to nephs and doing lots of research. He has no other health issues and is doing really well on dialysis especially since he's been on nocturnal home hemo.
Please people try to respect other people's opinions and don't take things personally. :beer1;
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Please people try to respect other people's opinions and don't take things personally. :beer1;
Good advice.
Why can't members discuss things without trying to prove someone else wrong?
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del, generally speaking i DO respect others' opinions. in fact, you will NEVER find a post of mine that has me critising anyone for their opinion or even how they might express themselves. but when someone dumps on me for simply stating my view, and then follows me around to harass me, don't expect me to curl up into a ball and take it lying down. that's not what i do.
i agree with what you say about a transplant, too. i've seen too many fail to really be that upset about not getting one myself.
take care.
LL
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Please people try to respect other people's opinions and don't take things personally. :beer1;
Good advice.
Why can't members discuss things without trying to prove someone else wrong?
the answer is 'ego,' plain and simple.
;)
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All I know is get cracking with the bottle. I need a glass, soon! I know I have to just get on with life and go for it! I have my bucket list I am slowly filling in.
I have on my list now:
Las Vegas IHD October 10!
Tuscon, Arizona in November if this year.
Washington D.C. next November.
On to Australia the next year or so after that! You Aussies expect me! I am putting money away for THAT trip!
I have been:
To Williamsburg, Virginia, Jamestown and Yorktown- Did the entire history things there.
to Chicago, IL twice now
Milwaukee, WI in the winter and summer
Pismo Beach, CA
Bellevue, Washington
San Diego, CA
Oceanside, CA
These have all been while I have been on dialysis.
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good on ya kitkatz! i'd love to travel, but living on a disability, we have a hard enough time making it thru the month with enough food.
pass that bottle over, willya?
:beer1;
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Sorry I'm late at posting LL.
That was a waste of time for you to go there and then have them tell you that when they could have explained that over the phone I'm thinking. That cardiologist sounds like an idiot, but then again he could be right. A second opinion would be good, but understand that is not easy to do up there.
Take it easy LL
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Hi LL,
I am in the same boat as you, no transplant, for more than one reason, and one of them is that I am 70. I am one of those who can stop dialysis if I get too old and cranky or just get tired of it. Not all bad. Hey, every body has to die sometime and of something. Life is funny, no one gets out alive.
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I am sorry to here about your transplant hopes (sort of) crashed. It is a bummer. But the road takes us all on diffirent paths. No one knows why or where but somehow we are all going to end up dead. :) (I know it sounds morbit but it was meant as a joke) At least we don't have liver failure....
I wish you well on your route and may you enjoy every minute of it.
LIVE !!!! until you die.
(yeah ! for dialysis)
:)
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thanks so much chris, jean and des! you made my morning a happy one. :flower;
yes, there are some good things about dialysis. like, if we choose to go out all we have to do is stop dialysis. that IS a form of control that no one can take from us.
i would like a second opinion on my heart issue, but this doc is supposed to be, at least i've been told that he is the best in the area and i was also told that he doesn't make 'big' mistakes.
we'll see. heehee
in the meantime, i am massively uplifted by the support from you folks. blessings of bliss to all of you!
love
LL :2thumbsup;
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:cuddle; Stay healthy - you never know what will change -or be invented - or what criteria will be required in the future. Sorry about the disappointment LL.