Which transplant hospital/clinic did you use?

[Lulu]

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  .

[angela515]

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..

[Lulu]

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.

[angela515]

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.

[Lulu]

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.
 

[angela515]

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!

[KT0930]

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.

[kelliOR]

I had my transplant at OHSU (Oregon Health Science University)
I have no complaints, have had excellent care.   

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

[KT0930]

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.        

[kelliOR]

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.        

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.

[angela515]

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.

[kelliOR]

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

[Romona]

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.

[mmmmdeedee]

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!

[Romona]

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?

[mmmmdeedee]

of course, for you anything. IHD discount of $100!!

[Chris]

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.

[skyedogrocks]

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? 

[Jenny]

  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.

[oswald]

It's definitely a good idea to list with as many facilities as possible  ...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)! 

[Jill D.]

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.

I     LOVE     MAYO     CLINIC!!!!!!!!   I'll be heading back to Rochester on Nov 25th for my 1-year follow up!

[paris]

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

[Jill D.]

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!!!

[paris]

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

[okarol]

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