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Author Topic: Saw my 'transplant team.'  (Read 5358 times)
LightLizard
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« on: July 20, 2009, 06:58:49 PM »
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!

:)
« Last Edit: July 20, 2009, 07:01:01 PM by LightLizard » Logged
rose1999
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« Reply #1 on: July 20, 2009, 10:41:44 PM »
I can't say anything profound or helpful but here's a big hug.  :grouphug;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #2 on: July 20, 2009, 11:44:57 PM »
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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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
kristina
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« Reply #3 on: July 21, 2009, 01:30:26 AM »
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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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glitter
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« Reply #4 on: July 21, 2009, 07:58:46 AM »
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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Jack A Adams July 2, 1957--Feb. 28, 2009
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LightLizard
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« Reply #5 on: July 21, 2009, 08:22:11 AM »
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:
« Last Edit: July 21, 2009, 08:23:19 AM by LightLizard » Logged
boxman55
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« Reply #6 on: July 21, 2009, 09:21:40 AM »
Hang in there, I feel the same about losing the disability...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
angellady07
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« Reply #7 on: July 21, 2009, 09:53:14 AM »
 :grouphug;
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LightLizard
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« Reply #8 on: July 21, 2009, 09:57:02 AM »
Quote from: glitter on July 21, 2009, 07:58:46 AM
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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kitkatz
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« Reply #9 on: July 21, 2009, 09:59:12 AM »
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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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
LightLizard
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« Reply #10 on: July 21, 2009, 10:09:22 AM »
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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paris
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« Reply #11 on: July 21, 2009, 02:04:03 PM »
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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It's not what you gather, but what you scatter that tells what kind of life you have lived.
LightLizard
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« Reply #12 on: July 21, 2009, 02:34:24 PM »
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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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #13 on: July 21, 2009, 02:55:42 PM »
Go LL - tell it like it is!
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
KICKSTART
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« Reply #14 on: July 21, 2009, 03:08:07 PM »
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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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
LightLizard
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« Reply #15 on: July 21, 2009, 03:14:48 PM »
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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KICKSTART
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« Reply #16 on: July 21, 2009, 04:13:39 PM »
 :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Sunny
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Sunny
« Reply #17 on: July 21, 2009, 04:23:16 PM »
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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Sunny, 49 year old female
 pre-dialysis with GoodPastures
LightLizard
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« Reply #18 on: July 21, 2009, 05:14:11 PM »
thank you Sunny. you definitely brightened my day!

love

LL :guitar:
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dwcrawford
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Getting the heck out of town.
« Reply #19 on: July 21, 2009, 06:51:02 PM »
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?
« Last Edit: July 21, 2009, 06:55:20 PM by dwcrawford » Logged
Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
LightLizard
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« Reply #20 on: July 21, 2009, 06:57:16 PM »
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;
« Last Edit: July 21, 2009, 07:05:10 PM by LightLizard » Logged
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #21 on: July 21, 2009, 07:03:40 PM »
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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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
LightLizard
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« Reply #22 on: July 21, 2009, 07:07:18 PM »
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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del
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« Reply #23 on: July 21, 2009, 07:07:57 PM »
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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Don't take your organs to heaven.  Heaven knows we need them here.
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« Reply #24 on: July 21, 2009, 07:14:32 PM »
Quote from: del on July 21, 2009, 07:07:57 PM

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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Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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