I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: YLGuy on August 26, 2009, 03:42:16 PM
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My transplant hospital called today and I have my orientation meeting September 8th and my meeting with the social worker October 15th. I have so been wanting to just start this process. I have had 5 people asking when they can be tested for me. I keep telling them not for a long while as I need to go through a long screening process first. :yahoo;
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Sound great!
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:yahoo; YLGuy. Good Luck. :cuddle;
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:clap;
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:2thumbsup; Great news! Moving forward is a really good thing. :yahoo;
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And let's hope that one of your possible donors turns out to be a match! :2thumbsup;
This is good news. :yahoo;
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And let's hope that one of your possible donors turns out to be a match! :2thumbsup;
This is good news. :yahoo;
I am not holding my breath but it does give me a little hope. 3 of them are family and 2 are friends.
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Ylguy,
In this department I can assist you.....
You do not know how "lucky" and loved you are. I only had 1 person offering to get tested... No family no friends ... just one complete stranger.
AND SHE WAS A PERFECT MATCH.
So ... what I am trying to say is... the chances are good that at least one of them is a match. (I hope so)
The work-up for me took a very long time as I spread the tests out over a period of 8 months (to try not to stay of work too long)
I still have to go for a few more.. the dreaded angiogram
But I have been on the transplant list for just over a year now.
I am thinking of you and I hope you get accepted......
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Wonderful news!!!!! :pray; :pray; :pray;
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Congrats, Marc!
Even if the tests take a while, there is a very different feeling to the wait when you are actually acomplishing something and getting those results collected. You are young (for a transplant candidate, you absolutely are!) so there may not be as many tests as you might think. When I first went to get listed at USC, all they required from me was an ekg, echo, chest x-ray, and renal ultrasound - oh, and pints and pints of blood. I was able to get three of the four tests done on the same day, and the blood work they should do as part of your initial eval when you meet the transplant team.
It is great that family have stepped forward as possible donors. Your odds of getting a good match increase with relatives. In fact, you have a 1 in 4 chance of getting a perfect (6/6) match with a sibling.
Best of luck to you! Keep us updated! :flower;
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Great news! I am proud of your family and friends. Some friends and relatives have showed themselves so uncaring. Hope everything goes well and you have 5 matches!!
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Does anyone know what is involved in the orientation meeting? I guess I will call and ask. I need to know how long I will be because I need to pick up my kids after school or make other arrangements for them.
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Mine was maybe 2-3 hours. Several people spoke to us. Transplant co-ordinator, financial co-ordinator, question and answer session, etc. I didn't know much when I went -- pre IHD for me! So, I thought it was just going to be a walk in the park. They make it all sound so easy. You already know the reality and are prepared. Let us know how it goes.
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I hope all goes well for you.
We went to 3 different orientations (multi listed) and they were all different. One was just a slide show, another was a panel of patients and another was an overview by the transplant coordinator.
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My orientation was 4 hours...I met with a surgeon, social worker, psychologist, nurse practitioner and had blood and urine tests. They gave me a list of the testing I would need then sent in a Clinic volunteer who was near my age who got his transplant 4 years previous. It was nice to meet him and ask him nitty gritty questions.
I contacted a large local clinic the next day and set up appointments for my tests...I guess I was in a rush...because I had all my testing done in a two week period. I was listed a month later...was on the list for 15 months (they told me the wait would be 3+ years...but I have the goody bestest bloodtype to have when you're looking for spare parts. (AB) Good luck in your quest!
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I have been to five evals in the past 5 years (lots of moves, really particular about surgeon personalities, and multiple listings). Only two made me go to an orientation: UCSF (~1hour) and Northwestern (~2.5hours). UCLA wanted me to be on the other side of LA at 8AM and stay there for 4 hours. Oh, how I laughed! :rofl; Until I realized they were serious. :-\
If it isn't too much hassle, I would make other arrangements for your kids. Because you are dealing with other patients, not to mention hospital staff who may be delayed, you don't want that added worry/distraction. Neither orientation that I went to started on time - not even close.
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Mine was in two parts, first day was 3 hrs. and the second time was about 2 hrs. mainly waiting for the surgeon to arrive. I wouldn't take kids, there is so much info to absorb, I had my hubby go with me and between the two of us we barely could remember everthing that was talked about...it's a bit overwhelming with all that info at first but you'll do fine....it's exciting.
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That reminds me. I took a notebook with me and wrote down as much as I could. I also got a business card from each person we met with - which came in handy later when I had questions.
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That reminds me. I took a notebook with me and wrote down as much as I could. I also got a business card from each person we met with - which came in handy later when I had questions.
Great advice! Thank you.
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It was 2 hours long with 3 other people and their support people. It was mostly a power point presentation. Thanks to IHD I knew 98% of the material already. We even had a test after-100%. We then filled out a bunch of paperwork. This transplant center is small with 1 transplant surgeon. Only 1 person out of 5 who request to be a transplant recipient are eligible to be on their list. They only accept living donors who have an emotional tie to the recipient. She talked about their outcomes which I already knew about (why I chose them)
* St. Joseph Hospital Kidney Transplant Center patients have the highest one-year patient survival and transplant success rates in Southern California as reported on the 10 most recent SRTR reports covering transplants performed since 1/1/2001.
* St. Joseph Hospital patients have 100% one-year patient survival reported on the 10 most recent SRTR reports covering transplants performed since 1/1/2001.
* St. Joseph Hospital patients have 100% one-year graft survival reported on the five most recent SRTR reports covering transplants performed since 7/1/2003.
* The SRTR has calculated that graft survival for St. Joseph Hospital patients has been “statistically higher” than what is expected based on patient and donor risk factors, for transplants performed since 7/1/2003.
* The average one-year graft survival for all U.S. transplant centers is the highest it has ever been at 92.80% (as of 6/30/07). St. Joseph Hospital's Kidney Transplant Center one-year graft survival rate has maintained a 100% rating.
I then turned in the paperwork that they had sent in advance along with all of my most recent labs and original paperwork from my diagnose of ESRD from my hospital stay.
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Ok YLGuy, I am tossing out some thoughts here because we were at 3 different transplant center simultaneously, so I have perhaps a unique perspective.
I remember USC having worse numbers but their explanation was that they tried to help patients who couldn't get help anywhere else (particularly with liver transplants.) Ultimately that got them into trouble with UNOS because a higher number of patients died (again - liver patients) which cast a pall on their transplant reputation for a while. I think that's why many centers now only accept the healthiest of the healthy patients for transplant so as to increase the odds of success. I do not know if that's the case at SJ.
This is my opinion, but I think it's very short sighted to accept only "emotionally attached" donors. Most centers have evolved from that practice, and I might argue that it's even more risky to accept emotionally involved donors.
Anyway, I am glad you were prepared and it sounds like all should go well for you! :2thumbsup;
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The emotional attachment thing I just found out about today and agree with you. This was my first encounter and am curious how this will al unfold. It is a whole new chapter in my life.
On another note. I just looked at my profile and....
THIS IS MY 100th DAY AT IHD AND IT JUST SO HAPPENS THAT THIS IS MY 500th POST. :yahoo;
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Hi,
I am glad that it went well..... I will be with you on the rollercoaster ride....
D
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Marc, just incase this doesn't pan out due to the "emotional atttachment" and only accept X amount of patients, do you have a back up plan? Such as another center to look at with acceptable results.
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And let's hope that one of your possible donors turns out to be a match! :2thumbsup;
This is good news. :yahoo;
I am not holding my breath but it does give me a little hope. 3 of them are family and 2 are friends.
Hey, don't be so negative. You have 5 people willing to test themselves. That is truly wonderful and I am sure that one of them will be a match. I will pray for you. :clap;
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Marc, just incase this doesn't pan out due to the "emotional atttachment" and only accept X amount of patients, do you have a back up plan? Such as another center to look at with acceptable results.
There are other good hospitals in the area and I am close enough to the San Diego area to list there.
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Good luck as you go through this process. :2thumbsup;
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I remember USC having worse numbers but their explanation was that they tried to help patients who couldn't get help anywhere else (particularly with liver transplants.) Ultimately that got them into trouble with UNOS because a higher number of patients died (again - liver patients) which cast a pall on their transplant reputation for a while. I think that's why many centers now only accept the healthiest of the healthy patients for transplant so as to increase the odds of success. I do not know if that's the case at SJ.
That is an especially lame explanation from USC. Another hospital I am familiar with - Madison - tried this same excuse. The stats are controlled for extra risk, which is why you have the percentage that would be statistically expected to survive given the transplants performed against the number that actually survived. While stats are an imperfect measure, I went to USC despite their liver transplant fiasco, and they were horrible: incompetent, disorganized, slooooow, and just plain rude.
My thinking was that they would treat me especially carefully since they theoretically were trying to rebuild their reputation. The exact opposite turned out to be true. I am the healthiest of the healthy, not to mention I have the financial resources, (relative) youth, the history that demonstrate how well I tolerate this procedure, and most attractive of all, the live donor. If they were too stupid to treat me with care and respect, I shudder to think how they treat the older, disadvantaged, inner city individuals that supposedly make up a large portion of their patients. I would avoid USC at all costs.
I am also unimpressed with UCLA, but never was evaluated there so do not have the personal experience to that extent. Cedars was great - if it comes to that, Marc, I would try Cedars or Scripps since Karol had a good experience there. I would avoid UC-Irvine. Horrible scandal there, and from my USC experience, hospitals that have been scandalized earn every drop of scorn they receive.
Good luck, Marc! It sounds like things went well at the orientation, and I have little doubt that you will be among the 20% that get on the list at your current center.
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Thank you so much! Great information.