I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Roxy on September 11, 2007, 04:48:49 PM

Title: Which transplant hospital/clinic did you use?
Post by: Roxy on September 11, 2007, 04:48:49 PM: I was thinking since a lot of people sometimes need to "shop" around and it can get very frustrating and uneasy trying to figure out where they are comfortable to do a transplant, we could start a list talking about which hospital/clinic we used and the pros/cons, plus possibly any other ones we might have tried and why those were not chosen. And any other additional info that might be helpful to future recipients.

I went to Swedish Medical Center in Seattle. They have the non-steroid protocol option plus they are constantly doing research projects which sometimes involve steroids if people are more comfortable with that. The transplant team was great and always on the ball. They are very picky about the patients because they are extremely concerned about people screwing up their statistics. However, this makes them also very attentive with the care they provide. Overall, I'm happy with them :2thumbsup;
Title: Re: Which transplant hospital/clinic did you use?
Post by: okarol on September 11, 2007, 04:58:03 PM: Hi Roxy,
Swedish was one of the hospitals we were going to multiple list at if nothing happened with the living donor. Jenna was listed with California Pacific Hopspital in San Francisco, USC in Los Angeles, and ultimately got her transplant at Scripps Green Hospital in La Jolla, CA. Scripps was wonderful, from the very first contact all the way through to nearly 8 months post-op now.

You can also view current and historical information accumulated about individual transplant centers --> http://www.unos.org/data/about/viewDataReports.asp
Title: Re: Which transplant hospital/clinic did you use?
Post by: Beth36 on September 11, 2007, 05:01:22 PM: My mom was tested initially at UAB in Birmingham and when they found she has high PRA, they pretty much dropped her. They STILL have NOT called us with our blood test results.....BUT the day we found out she has high PRA, we found that Mayo Clinic in Rochester, MN can treat it. So, she will have her transplant there.

Beth
Title: Re: Which transplant hospital/clinic did you use?
Post by: BigSky on September 11, 2007, 07:38:48 PM: This site will let you check out the various states and their transplant centers and check how many people are listed at a center and the various transplant rates at the center.

http://www.ustransplant.org/csr/current/csrDefault.aspx
Title: Re: Which transplant hospital/clinic did you use?
Post by: livecam on September 11, 2007, 08:17:44 PM: UCSD Hillcrest in San Diego. I'm very pleased with the results.
Title: Re: Which transplant hospital/clinic did you use?
Post by: mrhecht on September 11, 2007, 09:00:06 PM: Well, I have not transplanted yet, but I tested at two centers. UTMB Galveston, Texas was the 1st one and the testing was done so impersonally and without any thought to patient dignity or comfort so I declined their offer of a cardiac cath and went to The Methodist Hospital in Houston where I have been very pleased so far with information given, patient education and communication with the coordinators. I like the surgeons and know the staff.

I later found out through a reliable source that UTMB recently received a multi-million dollar grant to revamp their transplant program. They brought in new surgeons and coordinators. They needed new coordinators because the one I dealt with 2 years ago was a moron.

The interesting part about them getting the grant is that they were about to lose their Medicare certification. They serve a large low-income population, so its good that they got the money to make the program better. I hope it does improve because I would be able to list there in addition to Houston.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Meinuk on September 11, 2007, 09:04:22 PM: I'm at St. Lukes's Manhattan. I really like Dr. Benvenisty - he came highly recommended. He also did my fistula. And he recommended me to a wonderful surgeon when I needed other surgery. They make you feel special even when there are hundreds of other people on the service. Not to say that after 2 + years I'm thinking about being multi-listed. I'm just so sick of going to Dr's appointments right now, the thought of going to an additional medical center out of state just saps all of my energy. Now that I am starting home hemo, I think that I'll just wait...
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 11, 2007, 09:12:48 PM: 1st transplant, Sunrise Hospital, Las Vegas, NV.

2nd, Mercy Hospital, Des Moines, IA.

No complaints with either.
Title: Re: Which transplant hospital/clinic did you use?
Post by: waitlisted on September 11, 2007, 09:56:51 PM: I will be going to Baylor University Medical Center in Dallas, TX

All evaluation work at Dallas Transplant Institute has been going very smoothly.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Lulu on September 11, 2007, 10:11:28 PM: Bigsky thanks for the transplant center link. Very helpful.

I am currently trying to get in a transplant center and not having much luck. One in Orlando, FL sent a giant application package for me "to be considered." They also sent lab results for another patient with the packet by accident. So, don't think I will be using them. I was thinking about going to Southwest Regional in Ft. Myers, FL but I am having trouble getting them to accept me because I do not have medicare part B yet. Which, technically is automatically granted once I am admittted. I don't want to go to Miami. So, I am currently at a loss for what to do. Any suggestions? Anyone know anything about Florida transplant centers? And how do I choose a center what should I look for and what questions should I ask? Most Grateful for any help. Lulu
Title: Re: Which transplant hospital/clinic did you use?
Post by: keefer51 on September 12, 2007, 02:20:20 AM: I received my first transplant at Lehigh Valley hospital in Allentown Pennsylvania. My brother and i were the first sibling donor transplant at the hospital.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Zach on September 12, 2007, 03:04:16 AM: Quote from: Lulu on September 11, 2007, 10:11:28 PM
So, I am currently at a loss for what to do. Any suggestions?

Try Tampa, they seem to do a good number of kidney transplants. Sorry, I don't have any more info.
Since Florida has no helmet law, your wait may not be as long as elsewhere.
8)
Title: Re: Which transplant hospital/clinic did you use?
Post by: st789 on September 12, 2007, 12:34:19 PM: St. Vincent in los angeles.
Title: Re: Which transplant hospital/clinic did you use?
Post by: rimbo74 on September 12, 2007, 12:36:49 PM: Baylor Medical Center of Dallas - transplant
DTI (Dallas Transplant Institute) - Transplant Clinic
Title: Re: Which transplant hospital/clinic did you use?
Post by: vandie on September 12, 2007, 03:03:51 PM: Loma Linda University Medical Center, Loma Linda, CA
Title: Re: Which transplant hospital/clinic did you use?
Post by: paris on September 12, 2007, 03:26:58 PM: University of North Carolina at Chapel Hill, listed Dec. 2005 Average wait-6 years

No average wait time given for someone with PRA of 100%---well, they did say something

Carolina Medical Center, Charlotte,N.C., listed May 2006 Average wait-2 years
about 30 years or when hell freezes over!!!

Johns Hopkins Hospital, Baltimore Md., listed Feb. 2006

The second two centers do positive crossmatch transplants. They all have been very willing to share tests results with each other(with no cost to me). I have been impressed with all three. I will say Carolina Medical Center was very quick with appointments and tests.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Beth36 on September 12, 2007, 05:41:41 PM: LuLu

I heard that Florida has the shortest wait time for a kidney. Mayo Clinic has a location in Florida in Jacksonville. Tampa has Tampa General. I don't know anything about these two places but they are the only two I know of. I am sure there are lots of others.

Beth
Title: Re: Which transplant hospital/clinic did you use?
Post by: lola on September 12, 2007, 05:59:29 PM: Otto and his brothers have had a total of 7 transplants all at the University of Minnesota and Otto's 2nd will make 8 needless to say they are awesome in our eyes.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Romona on September 12, 2007, 06:14:35 PM: University of Pittsburgh's Starlz's Transplant Institute. No complaints. I love them! :2thumbsup;
Title: Re: Which transplant hospital/clinic did you use?
Post by: Jill D. on September 12, 2007, 07:01:36 PM: Mayo Clinic/Rochester Methodist Hospital in Rochester, MN :thumbup; :2thumbsup; :thumbup; :2thumbsup; :thumbup; :2thumbsup;
Title: Re: Which transplant hospital/clinic did you use?
Post by: Roxy on September 12, 2007, 07:31:23 PM: Quote from: Lulu on September 11, 2007, 10:11:28 PM
And how do I choose a center what should I look for and what questions should I ask? Most Grateful for any help. Lulu

Lulu, for me it was important to check the statistics of the hospital. I was definitely more comfortable knowing that my transplant team was performing transplants weekly. You definitely want to be very comfortable with the team and have a good relationship. They're going to be taking care of you for as long as your new kidney works, so you want to make sure that you trust and have faith in their knowledge and abilities. When you meet with a transplant team, make sure they explain the process to you in detail; I know different hospitals sometimes do slightly different procedures before, during, and after transplant. Also, before you meet with a transplant team you might want to figure out if you prefer a steroid or non steroid treatment post transplant. This will help you in determining a hospital as well. You might want to ask if they place a stent, because not all hospitals do this; so it is just good to know before hand. If I can think of anything else I will let you know. I hope some of this helped.
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 12, 2007, 07:49:58 PM: Quote from: Roxy on September 12, 2007, 07:31:23 PM
Also, before you meet with a transplant team you might want to figure out if you prefer a steroid or non steroid treatment post transplant. This will help you in determining a hospital as well.

Not everyone is qualified to do this even if the hospital does it.. different factors allow people to either be able to go on a steroid or steroid-free protocol, just wanted to let that be known as well. :)

Speaking of your transplant team taking care of you for as long as your transplant works... this is what keeps me from moving, not that I am going to be moving right now anyways, but I mean.. I was thinking about it for in a few years.. and I just don't know if I want to give up my team for another one when I love this one so much..
Title: Re: Which transplant hospital/clinic did you use?
Post by: Roxy on September 12, 2007, 08:12:15 PM: Quote from: angela515 on September 12, 2007, 07:49:58 PM
Speaking of your transplant team taking care of you for as long as your transplant works... this is what keeps me from moving, not that I am going to be moving right now anyways, but I mean.. I was thinking about it for in a few years.. and I just don't know if I want to give up my team for another one when I love this one so much..

Angela, good point about if people qualify for steroid vs. steroid free. Would your transplant team still stick with you if you lived in another state? I moved back to California and my team is in Seattle, but I stay in contact with them. I have a nephrologist here and if there is anything either of us get unsure about we contact the team. On top of that they get a report of all of my labs as if I was still there. I also plan on going to Seattle to "check in" with them every six months or so. I was just wondering if something like this was possible with your team??
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 12, 2007, 08:15:57 PM: I sure will ask about that Roxy... I was just planning on moving 4 hours away if I move at all... so I guess I could even still come back and so on, once I get to the point of every 3 months and so on.. Thanks! :)
Title: Re: Which transplant hospital/clinic did you use?
Post by: Roxy on September 12, 2007, 08:18:46 PM: :thumbup; No problem. I like it because I can live where I want, but my team is still very much "in charge" of my care. I love my doctor here, but he's not extremely familiar with steroid free protocols so it's more comforting to know he has to check with my transplant team if he wants to make any changes.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Lulu on September 12, 2007, 08:31:41 PM: Quote from: Roxy on September 12, 2007, 07:31:23 PM
Quote from: Lulu on September 11, 2007, 10:11:28 PM
And how do I choose a center what should I look for and what questions should I ask? Most Grateful for any help. Lulu

Lulu, for me it was important to check the statistics of the hospital. I was definitely more comfortable knowing that my transplant team was performing transplants weekly. You definitely want to be very comfortable with the team and have a good relationship. Also, before you meet with a transplant team you might want to figure out if you prefer a steroid or non steroid treatment post transplant. This will help you in determining a hospital as well. You might want to ask if they place a stent, because not all hospitals do this; so it is just good to know before hand. If I can think of anything else I will let you know. I hope some of this helped.

Thank Roxy - Good info. Quick question - what is the stent used for and where does it go? Also, I currently take prednisone for Addison's disease and know first hand what it is like to be on too much steroids. I am very short (4'11") and often new docs like to over-medicate me. What is the difference in meds between steroid or non steroid treatment? Just curious as to the pros and cons of each. My husband and I moved from Kona, HI to Florida specifically to have my transplant. His work is based out of Florida and we had to spend a lot of time apart when we lived in Hawaii. It has been a huge sacrifice as I love love love Hawaii, but I love my husband more :).
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 12, 2007, 08:34:47 PM: If your already taking Prednisone, then most likely you will just remain on it, which means you would be on a "steroid protocol"... since the steroid that is used is Prednisone.

I am also short from Prednisone... I wish if I had to go on it, I could of waited until I stopped growing.. :)
Title: Re: Which transplant hospital/clinic did you use?
Post by: Lulu on September 12, 2007, 08:47:33 PM: Do you think I could just keep taking my pred for my addison's and do a non-steroid protocol? Oh, and unfortuneately, I was short before I started taking it. I was 21. But it has ruined my ankles and tendons. I can't jump around or excersice how I used to because I might have to have them surgically fixed. My left foot is the worst, am supposed to physical therapy, nut not sure if it is going to make a difference. I hate prednisone!! It is a nasty, nasty drug. But, don't know alot about the other drugs. Just what I am reading on this site which is very helpful.
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 12, 2007, 10:25:33 PM: Quote from: Lulu on September 12, 2007, 08:47:33 PM
Do you think I could just keep taking my pred for my addison's and do a non-steroid protocol? Oh, and unfortuneately, I was short before I started taking it. I was 21. But it has ruined my ankles and tendons. I can't jump around or excersice how I used to because I might have to have them surgically fixed. My left foot is the worst, am supposed to physical therapy, nut not sure if it is going to make a difference. I hate prednisone!! It is a nasty, nasty drug. But, don't know alot about the other drugs. Just what I am reading on this site which is very helpful.

I would assume so Lulu, since your already on prednisone... I would think maybe they would just up your dose for a little bit but I don't know, something you should definitely right down to ask them. :)

I totally[/color] understand about your ankles. I had to have both my ankles fused together. Due to getting AVN from prednisone. The pain was completely gone until 2 years ago, so I would say the fusions were a success for me.

* Ankle fusion is the surgical immobilization of a joint. The ends of two bones are fused together in arthrodesis with screw fixation and possible bone grafting. The goal is pain relief and regained stability and strength. The bones are aligned in the most functional position, but lose their natural motion.

My surgeon was so freakin' awesome I still have enough movement to where I could walk and run just as before i ever needed the surgery. So nobody knew I had my ankles fused without asking or knowing me already.

* William G Pujadas, MD ~ Jacksonville Orthopaedic Institute, P.A. Jacksonville Orthopaedic Institute, P.A. (One of the surgeons for the Jacksonville Jaguars)

It has been 10-11 years since the completion of both my ankle fusions and my re-learning to walk was completed. So, since I was still on prednisone my AVN has returned in my ankles and I will now need ankle replacements in order for the pain to go away.

Just offering my personal journey with ankle surgery's so you can get an idea of all options available and hear the patients side. :)
Title: Re: Which transplant hospital/clinic did you use?
Post by: Lulu on September 12, 2007, 10:44:29 PM: Wow, thank angela 515!!! That is useful info. Are you in Jacksonville? I am thinking about trying the transplant center (mayo in Jacksonville). Any info on them? Thanks again for the very useful info.
:bow;
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 12, 2007, 10:51:11 PM: I currently live in Iowa... but have been faxing my current situation and medical records to Dr. Pujadas because I want to maybe go there for him to do my ankle replacement, if possible insurance wise.

I don't have any info on Mayo in Jacksonville... but Mayo is a great hospital in every city I've been to one at.

Good luck! :)
Title: Re: Which transplant hospital/clinic did you use?
Post by: KT0930 on September 13, 2007, 07:13:53 AM: January 1982 - Medical College of Virginia Hospital; Richmond, VA (I was 7, from what I remember, they were great...)
March 2002 - East Carolina University/Pitt County Memorial Hospital; Greenville, NC. Unlike some that mentioned it, this team released me from their care back to my regular neph after about six months, and we ceased contact. I like some of them and not others, I guess that's how it goes.
Currently listed at Piedmont Hospital in Atlanta. LOVE the surgeon (John Welchel, never seen without his cowboy boots, including in surgery), not so crazy about my coordinator. My neph said the other day he has actually called centers and complained about some coordinators and the lack of communication (unless the patient calls and then we're given an attitude), I have a feeling mine was one of them! Was considering UAB for multi-listing, but someone above mentioned they don't like high PRA's...oh well.
Title: Re: Which transplant hospital/clinic did you use?
Post by: kelliOR on September 13, 2007, 09:57:58 PM: I had my transplant at OHSU (Oregon Health Science University)
I have no complaints, have had excellent care. :thumbup;

But............If I had my choice of ANY place in the country, it would be a no brainer.....UPMC Thomas E. Starzl Transplant Institute. Thomas Starzl is one the the pioneers of innovative transplant medicine. I am incredibly impressed with the research from that institution. Truly Remarkable work........... :)

kelli
Title: Re: Which transplant hospital/clinic did you use?
Post by: KT0930 on September 14, 2007, 10:16:04 AM: My neph told me about a protocol they're using at Starzl with some success on highly sensitized patients, and I agree, Kelli, I'd go there also. Alas, they do not take my insurance. :banghead; :banghead; :banghead;
Title: Re: Which transplant hospital/clinic did you use?
Post by: kelliOR on September 14, 2007, 12:50:18 PM: Quote from: KT0930 on September 14, 2007, 10:16:04 AM
My neph told me about a protocol they're using at Starzl with some success on highly sensitized patients, and I agree, Kelli, I'd go there also. Alas, they do not take my insurance. :banghead; :banghead; :banghead;

A friend of mine on another forum has had great success at UPMC due to a more individualized approach in immunosuppression. Instead of shooting for a common level of immunosupression in patients (standard serum trough levels), UPMC has protocols of treating with monosuppression (prograf), in addition to testing the status of the individual's immune system. Dr. Shapiro uses Cylex "Immune Cell Function" along with ELISA to monitor his patients. This enables tapering of Prograf a few months post transplant. These tests are continually used to determine how active the immune cell response is and treats that response with appropriate DOSES of prograf.

.........Its kind of like testing blood sugar. When glucose levels are high, insulin is giving accordingly.... Insulin is not given to keep it at a certain level in the body. (Just an analogy)

This "one size fits all" approach that is commonly used by measuring serum levels seems to ignore the fact that we are all individuals with very different donor organs, and we have very different immune systems.

I worry that some protocol standards over-suppress the immune system, and increase the risk of nephrotoxicity, CMV, BK virus, which eventually could lead down the path to rejection.

I would like to add that my friend did have campath induction prior to transplant, and now is on 5 mg Prograf weekly (2 years out). His immune cell function is monitored closely.
Title: Re: Which transplant hospital/clinic did you use?
Post by: angela515 on September 14, 2007, 12:52:54 PM: Very interesting approach kelli... I may print that of and ask my surgeon next Wednesday what he thinks about it and just get his views on it. Thanks for the info.
Title: Re: Which transplant hospital/clinic did you use?
Post by: kelliOR on September 14, 2007, 12:57:03 PM: Ya, I've been all over my transplant team with this one, too. What happens, though is many centers, like mine, have specific protocols they have developed over years to get the results and stats they have. Many are reluctant to try. I wish I had this information prior to transplant. k
Title: Re: Which transplant hospital/clinic did you use?
Post by: Romona on September 14, 2007, 06:42:35 PM: Kelli and I have been talking about this on the Campro thread. I did not realize my treatment is different from everyone else. I didn't realize I had Campro until I peeked at my chart today (I don't remember much about the transplant) . Dr. Shapiro said that I am a candidate to be weaned from Prograf. I couldn't do a Cylex today as they can't process it over a weekend. Also it can't be done by an outside lab. I have been doing the Eliza's every three months. I am now going to do labs once a month and I am on a 6 month recall to clinic.

Here is something positive about Prograf. They have only one patient that has ever had to stop taking it. He reached a toxic level and had to start on something else. He had a kidney and pancreas. He is doing great now. He told me what he takes but I can't remember what he is now.
Title: Re: Which transplant hospital/clinic did you use?
Post by: mmmmdeedee on September 26, 2007, 09:37:25 PM: Cedars-Sinai hospital in Los Angeles, Ca.

You should have seen all the papparazzi trying to take my picture!! They thought I was Lucy Liu. I hate when that happens!
Title: Re: Which transplant hospital/clinic did you use?
Post by: Romona on September 27, 2007, 02:10:02 PM: Quote from: mmmmdeedee on September 26, 2007, 09:37:25 PM
Cedars-Sinai hospital in Los Angeles, Ca.

You should have seen all the papparazzi trying to take my picture!! They thought I was Lucy Liu. I hate when that happens!

Can I have you autograph?
Title: Re: Which transplant hospital/clinic did you use?
Post by: mmmmdeedee on September 27, 2007, 02:18:03 PM: of course, for you anything. IHD discount of $100!!
Title: Re: Which transplant hospital/clinic did you use?
Post by: Chris on October 06, 2007, 11:57:23 PM: Well when I was first put on dialysis, I was only told about Loyola in Maywood, IL so I went there to be listed for a kidney transplant. Found out that there was a pancreas transplant to, but they did not do one yet and were not ready to. I didn't want to be the first. So another transplant seminar from Rush in Chicago came to the dialysis center, got some info. I decided to go to the last couple of transplant centers in Chicago, Northwestern and University of Illinois at Chicago. U of I did not give me info to take home to consider them and Northwestern had the best and most current information to give out and take home. Plus they were not using steroids. So I decided to go with Northwestern and in December of 2000 I ad my transplant.
Title: Re: Which transplant hospital/clinic did you use?
Post by: skyedogrocks on October 24, 2007, 09:13:56 AM: Rob is listed at Massachusetts General Hopsital in Boston. It's one of the best out there for transplants. They also have the best track record for saving a kidney that is about to reject in the first year.

I have seen some people here listed at more than 1 hospital in their state. What are the Pro's to this?
Title: Re: Which transplant hospital/clinic did you use?
Post by: Jenny on November 07, 2007, 06:52:45 PM: :clap; :yahoo; Adjel had his transplant at the Mayo Clinic in Rochester, MN. At first, they treated Adjel as someone who came here to Rochester from a different city, because nobody local ever comes here, but it eventually got into their heads. Adjel drives for one of the clinic shuttles. It think it is great. Timing could not have been better. The transplant team is wonderful. The day Adjel got his transplant; they have a communicator that updates you when something happens. Which I thought was really neat. :bandance;
Title: Re: Which transplant hospital/clinic did you use?
Post by: oswald on November 07, 2007, 07:30:37 PM: It's definitely a good idea to list with as many facilities as possible :thumbup; ...it might seem like a hassle to go through the process over each place, but it increases your odds...for instance I got my 6 antigen match transplant back in May at Johns Hopkins, in Baltimore, but I was also listed with Washington Hospital Center in D.C. and got a call, with yet another 6 antigen match a few months later from them (we were happy to report to them that the next person in line could have it because I got one earlier this year)! :twocents;
Title: Re: Which transplant hospital/clinic did you use?
Post by: Jill D. on November 08, 2007, 06:08:07 PM: Quote from: Jenny on November 07, 2007, 06:52:45 PM
:clap; :yahoo; Adjel had his transplant at the Mayo Clinic in Rochester, MN. At first, they treated Adjel as someone who came here to Rochester from a different city, because nobody local ever comes here, but it eventually got into their heads. Adjel drives for one of the clinic shuttles. It think it is great. Timing could not have been better. The transplant team is wonderful. The day Adjel got his transplant; they have a communicator that updates you when something happens. Which I thought was really neat. :bandance;

I LOVE MAYO CLINIC!!!!!!!! I'll be heading back to Rochester on Nov 25th for my 1-year follow up!
Title: Re: Which transplant hospital/clinic did you use?
Post by: paris on November 08, 2007, 07:19:18 PM: Jill, I can't believe it has been a year! Tell Terry that I love her so much for giving you a kidney! I wouldn't have had the opportunity to meet you in person if she hadn't. I am so thrilled that the transplant has been such a success. You are special to me -- my guiding light! Love you :cuddle;
Title: Re: Which transplant hospital/clinic did you use?
Post by: Jill D. on November 16, 2007, 07:10:45 PM: E - I have soooo been meaning to send you an e-mail to let you know how great it was to meet you in Vegas!!! You and Beth have a great relationship, and I can tell you are very loved. My sister is so awesome....it overwhelms me what she did for me, but I honestly believe she never, ever consider not being my donor. She somehow knew years ago that she was my match, even before I realized I would actually get that that point of needing a transplant. I feel blessed in so many ways, and meeting you through this awesome site is truly a blessing!!!
I love you too!!! :cuddle;
Title: Re: Which transplant hospital/clinic did you use?
Post by: paris on November 16, 2007, 08:03:07 PM: I feel the same way Jill. Isn't it amazing how we came together? I love spending time with you and that sweetie of yours. How is Jim doing?

I hope someday I can post "which transplant center I used" I don't care which one at this point--I will go anywhere
Title: Re: Which transplant hospital/clinic did you use?
Post by: okarol on November 17, 2007, 11:10:35 AM: Quote from: skyedogrocks on October 24, 2007, 09:13:56 AM

I have seen some people here listed at more than 1 hospital in their state. What are the Pro's to this?

When you are wait listed in your procurement area you are part of your local list. Since organs are distributed locally first, they look at the pool of wait listed patients for a match (whoever has most wait time according to the OPTN list.) If you list OUTSIDE your procurement area, you are also considered to be a local patient in that pool. It increases your chances of receiving a kidney. OPTN/UNOS policies allow patients to be listed with more than one transplant center (multiple-listing.) The centers that you multiple list with will need to know that you can get there promptly in the event a matching organ becomes available.

Here's an article describing the pro's and con's of going outside the local area http://ihatedialysis.com/forum/index.php?topic=4430.0
Title: Re: Which transplant hospital/clinic did you use?
Post by: Katonsdad on November 23, 2007, 04:22:51 PM: When I first started treatments my Dr. told me to hold out for the dual transplant , Kidney and Pancreas . I was
originall set up with UCSF but I lived in the Orange County Ca area and it was arranged that I could go to UCLA at
Westwood .
I received my transplant at UCLA and they were great . It took 2 operations to get the job done as I was having
severe pain on the 3rd day and they found out that during a sneeze I tore the sutures attaching the pancreas.

The staff there was great and I was able to speak to a few new patients that were having their grafts done at the time.

I have since moved to Richmond VA and being new I did not know any doctors . I went to a Davita center about
a mile away and asked who the nurses and techs liked as a Doctor and chose the one they all liked.
It has worked out great.

Also here in Richmond I found the UNOS building and they have a memorial garden dedicated to Organ Donors .

Katonsdad
Title: Re: Which transplant hospital/clinic did you use?
Post by: kidney4traci on November 23, 2007, 09:18:34 PM: mrhecht thanks for the info on UTMB and Methodist. I too am listed with both. I listed with Methodist first a year ago, then UTMB this past July. They were very nice to me, I didn't realize that they were having problems. The coordindator from Methodist that I had been working with actually transferred to UTMB this summer too, so she knew my history and I felt very comfortable.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Romona on November 24, 2007, 08:22:51 PM: Katonsdad, My donor was from Kentucky. His family sent me the link to the UNOS Tribute they had done for him. The UNOS that covered his area was the Richmond one. I would love to visit someday. I would like to see the Memorial Garden.
Title: Re: Which transplant hospital/clinic did you use?
Post by: Katonsdad on November 24, 2007, 09:01:20 PM: I have been to the memorial 1 time since I moved here . It was on a Sunday and the main office was closed .
We walked around the Memorial and a security guard came out of the building and asked if he could help us .
We told him quickly that we were new and he told us that the site was closed but we could look inside the
main floor for a moment . There were several things to see but he was not that informed in all of them .

The Memorial is not really that big / I of course would have made it much bigger , as the people it is dedicated to
did something bigger than any memorial standing today . There should be names in lights , Giant columns and such . :usaflag;
I can not say enough about the one person in my life that I wish i knew... My Donor.

Katonsdad