Desensitization for High Antibodies while on the list... Your thoughts?

[alrightstill]

I've been on several lists for quite a few years..  My problem is.. I have a high PRA from my previous transplant.. so of course, its harder to find a match.

Anyway - I recently went for a re-evaluation at one of the hospitals (which shall remain nameless... for now.    ) and the surgeon was going on and on and on about how if I transfer some of my time from another hospital - then I can (and should) get the desensitization treatment to lower my antibodies.  He said theres no pressure or anything, for me to talk it over with my regular neph.

Well -- I did.. and my regular nephrologist said "Absolutely not, are they insane?"  My doc's whole thing is you should only go that treatment if you have a living donor ready and willing to donate.  He said he would call another surgeon to discuss.. but that he really thinks its not such a great idea.

Ok.. I was fine with that.. until about 10 minutes ago.

The hospital that wants to do this gave me a call saying they're going to send the form for me to fill out so that they can transfer the time.     I told "the helper who is helping out the transplant coordinators" (wtf.. yea, thats how she introduced herself to me!)  that my doctor doesn't think its such a good idea.  She then said that my doctor is uneducated and shes going to have the specialist at the unmentioned hospital call my doctor. 

It wasn't a pleasant phone call at all as she was very persistent even after I told her twice I'm not interested in getting this treatment at the moment.  I couldnt help but remember the doctor originally saying too that I wouldnt be pressured... so much for THAT, huh? 

So she hung up and said she is going to send me the form anyway and she'll have someone call my doctor so he can get "educated". 

 

Sooooooooooo.. my question, has anyone ever gone thru this treatment.. and/or have you ever heard of someone doing it - even if they dont have a donor available? 

Any insight would be great.  I can't believe how mad I was when I hung up the phone..

[monrein]

I have no input but what do they mean by transfer some of your time? 

[willieandwinnie]

alrightstill, I'd be curious about this transfer of time also. Never heard of it.

[alrightstill]

Well this particular hospital I've only been listed with since 2005.  In order to get the treatment, they said that I have to have had 5+ years with them..  So if I were to transfer my 7 years of being listed at a different hospital over to them.. it'll be like I was on their list for 10 years.  (I hope that makes sense..) 

I'd basically be withdrawling all my time with another hospital, and depositing everything into this hospital.   
 

[monrein]

Your 7 years of being listed for a transplant or for the treatments?  Sorry for seeming so dense but our system is so majorly different.

[petey]

alrightstill -- My husband Marvin has high antibodies, too (old transplant).  We checked into the plasmapheresis and the IVIG therapies but were told that it only lowered ("tricked the antibodies," as described to us) for a short time; hence, we were told that we would need to have a living donor tested AND APPROVED and "ready to go" before we did this.  We don't have a living donor   .

Also, Marvin checked out the entire process of "transferring wait time" to another transplant hospital, but we decided to stay with the one he was originally listed with.  The second hospital promised us all kinds of things (shorter waiter, extended pool of donors, "better" care, etc.), but, after going to the second transplant center for only six visits, Marvin was "passed around" to three different nephs and four different surgeons.  Each time we went back, he had been reassigned to another doctor.  It got so confusing and seemed very unorganized.  The second transplant center also had a "bunch of hoops" (as Marvin calls it) that he had to jump through.  They wouldn't accept any tests or records from his original transplant center and wanted him to start the entire process of getting on "their" wait list all over.  At his original transplant center (Duke Hospital in Durham, NC), he's had the same neph for 13 years and the same surgeon for 7 years.  We like the fact that he has a "history" with Duke and they know him there.  

Be careful if you decide to transfer wait time.  The grass is not always greener on the other side.  Check it out really, really carefully!

[monrein]

Are you guys saying that each hospital maintains its own list of donors?  Surely not?

[paris]

I am in the middle of all of this mess, too.   5 years seems to be the magic number.  My 1st transplant center is starting to do IVIG therapy and say it is for patients who have been listed over 5 years.  I am begging my co-ordinator to get me into the program.   My 2nd transplant center does plasmaphersis and IVIG but only with a living donor who has gone through the evaluation process.   With PRA of 100%, waiting on the "list" will be long or forever.    My hope is to be like our own Vandie----she had very high PRA, had IVIG threapy and received a cadaver transplant.    It does help to be listed at more than one transplant centers and is easy to do.        I hope Vandie posts because she can really explain how it worked for her.   My neph says there is West coast/East coast protogal. West coast is farther advanced with the IVIG therapy seems quicker to recommend it.   I am rambling, but am always glad to talk to others with the same problem.   Wishing you good luck with the process. Keep us posted!

[okarol]

Vandie is the only person I know who had plasmapheresis prior to her deceased donor transplant, she had priority because it was a perfect match, and she got heads up preparation by her transplant team, and a good bit of luck too! High PRA is dealt with differently by each center.

I can speak of the transfer time. Jenna was listed at Hospital #1 for 3 years, with no calls, no activity (still 5 - 7 years wait time.) We then multiple listed at Hospital #2 which was 6 hours drive north (5-7 years wait time ) and Hospital #3 which was 2 hours drive south (3 - 5 years wait time) - Jenna realized the chances were better to transfer her primary wait time from Hospital # 1 and trade it with the 30 days of wait time she had acquired at Hospital #3. Right away she was getting calls as a back up, and if the living donor hadn't come through I think she possibly would have gotten a deceased donor kidney within 6 months or so, much sooner than Hospital #1.

[vandie]

The reason I had IVIg and pharesis treatment was due to the fact we had a live donor ready to go.  We were canceled at the 11th hour.   I had another donor in the wings, and although she had just started her work up, my transplant center continued on with the treatments in order to attempt to get a negative cross match. 

Karol is right, I am one lucky girl.  Had it not been a perfect match, I would be on another path right now.

Many good thoughts for you.

[paris]

Thanks Vandie---I knew you could explain it better than I could!

[paddbear0000]

Allrightsill--if you ask me, it sure sounds like this hospital wants to be sure they get all the money from your transplant (since you would only be listed there if you transferred all your time to them) and be their guinea pig with the treatment. I'd stick with your gut feeling on this one!

[vandie]

Although I love my neph, he isn't as educated as I feel he should be on high PRA's and the treatment for same.
I'm not saying little Miss Helper was correct.  However, a lot of nephrologists know kidneys and dialysis, but transplant and all that goes along is not their bailiwick.

[alrightstill]

Your 7 years of being listed for a transplant or for the treatments?  Sorry for seeming so dense but our system is so majorly different.

 

Are you guys saying that each hospital maintains its own list of donors? Surely not?

Yes, in the US you are allowed to be listed with a Transplant at Center once in each state.  So currently I am listed in New Jersey, New York, Philadelphia and Maryland.  Though - and someone can correct me if I'm wrong, all centers use the main UNOS list to pick from..?  I don't know.  It's confusing, I'm sure someone else can explain it better. 

alrightstill -- My husband Marvin has high antibodies, too (old transplant).  We checked into the plasmapheresis and the IVIG therapies but were told that it only lowered ("tricked the antibodies," as described to us) for a short time; hence, we were told that we would need to have a living donor tested AND APPROVED and "ready to go" before we did this.  We don't have a living donor  .

That's exactly how my doctor feels.. Apparently it's not a definite treatment that will work and it only temporarily lowers or "tricks" the antibodies.  I just wonder are there any side effects when doing so?  Any damage that could be caused later down the years.. like would I grow a new nose or something? 

Paris, okarol and vandie - thanks for your response.  Is there a link somewhere on this board to explain more of vandie's journey?  I guess I'm not completely against the idea of getting the treatment even though I dont have a living donor - I just want to know as much about it as I can and not feel like paddbear pointed out.. they're just trying to get another patient in to get money. 

Thanks again for all the responses!!

[monrein]

Thanks for the clarification,  that makes more sense than what I was misunderstanding.

[BigSky]

Yes, in the US you are allowed to be listed with a Transplant at Center once in each state.  So currently I am listed in New Jersey, New York, Philadelphia and Maryland.  Though - and someone can correct me if I'm wrong, all centers use the main UNOS list to pick from..?  I don't know.  It's confusing, I'm sure someone else can explain it better. 

It is not so much states as it is regions.   Being multiple listed at transplant centers in the same region that is served by the local Organ Procurement Organization doesn't give one an advantage.  Its only when listed in multiple regions is there a benefit.  Some are broken down by states and others are combined areas I believe.

[okarol]

In California we have many different procurement areas. You can list in different ones.

This site has the best explanation of how the Organ Transplant Waiting List works - The Gift of a Lifetime:  http://www.organtransplants.org/understanding/unos/

[alrightstill]

Well, just a little update..

My regular nephrologist left me a message on Thursday asking for me to call him on Friday.  Of course, I didn't receive the message til Friday evening.

He didn't exactly say what the call was about, but I have a very strong feeling that the unmentioned hospital got a hold of him about doing the treatments on me.  My doc said "there's no urgency.. call when you get a chance" which makes me believe that he's still kinda not for it.. (I'm speculating here, of course.. )

I don't know.  The whole idea of transferring wait time (from the hospital that I've been listed with the longest - which also just happens to be from the hospital I had my first transplant at) and then having this hospital thats an hour and a half away from me doing this treatment that may or may not get me a kidney sooner..   Ugh.  Decisions decisions.

[paddbear0000]

It's your body and your health. You do what you want to do.

[alrightstill]

It's your body and your health. You do what you want to do.

Thanks padd.  That's exactly what my mom says, and that they can't make you do anything you don't want to. 

A doctor once said to me "You are the captain of your own ship."  At the time I literally did an LOL at him (I was young!) but as the years gone by, I see exactly what he means.