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Author Topic: Come to my pity party  (Read 11632 times)
RichardMEL
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« Reply #50 on: October 12, 2010, 08:29:20 AM »

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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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Riki
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« Reply #51 on: October 12, 2010, 12:52:27 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
RichardMEL
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« Reply #52 on: October 12, 2010, 09:35:49 PM »

well it's OK I live right over the road from the hospital :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Tracy
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« Reply #53 on: October 13, 2010, 10:30:21 AM »

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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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
Riki
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« Reply #54 on: October 13, 2010, 04:51:44 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Jean
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« Reply #55 on: October 14, 2010, 12:39:10 AM »

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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One day at a time, thats all I can do.
chook
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« Reply #56 on: October 14, 2010, 02:07:42 AM »

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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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
MooseMom
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« Reply #57 on: October 14, 2010, 07:16:43 AM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Riki
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« Reply #58 on: October 20, 2010, 08:19:15 AM »

I will gladly trade my period for being able to pee again.  Is that even possible?
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
chook
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« Reply #59 on: October 21, 2010, 05:52:00 PM »

Love the idea of the swap, Riki!
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
MooseMom
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« Reply #60 on: October 21, 2010, 06:00:07 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
RichardMEL
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« Reply #61 on: October 21, 2010, 06:15:53 PM »

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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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
MooseMom
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« Reply #62 on: October 21, 2010, 06:20:55 PM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
RichardMEL
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« Reply #63 on: October 21, 2010, 07:36:55 PM »

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)....

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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