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confused about how the list works and how many different list there are

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Posted 6/22/2011 1:27 PM (GMT 0)
With my husband going in for evaluation soon, the whole family is wondering about the list and how it actually works and if there is more than one list thru Wash. DC. His Mom showed me an artical in her local paper that said if you lived in OH your chances were higher of getting a liver than if you lived in NY. I've been under the impression that it is a national list, and all livers are given according to need/ MELD score. Any information to clear this all up for us would be greatly appreciated.
Posted 6/22/2011 3:32 PM (GMT 0)
my understanding is that there are regional lists. each region has a different average meld that transplant is done. I believe MamaLama may have posted some of this information along with website where she found this. I think that she said you could see how many patients were on the list in your region. Her Mike had his transplant at the very beginning of May...so she may have posted this information in April?

Sorry, I am not much help here...

ML-if you see this...do you recall?

Emma
Posted 6/22/2011 4:17 PM (GMT 0)
The list is regional, but that doesn't mean the the organ is from that region. There's a man here on island that got a kidney transplant in Boston, but it came from a deceased donor in Florida. Usually, the organs are regional, but in some instances when time is of the essence, exceptions are made. The main reason is time and how long it takes to get the organ to the patient.
Posted 6/22/2011 5:39 PM (GMT 0)
It is regional - give this link a try - it was very accurate in our case:

http://optn.transplant.hrsa.gov/latestData/step2.asp

Pam

Posted 6/22/2011 7:28 PM (GMT 0)
Just a general question:  Do multi listings with other centers have to be within the same district?  I'm thinking not, since a candidate in NY was told to consider being listed in FL.

ML, you had mentioned being able to see how many people were ahead of Mike on the list.  Where did you find this info?

Hugs,

Connie

Posted 6/23/2011 4:18 AM (GMT 0)
My understanding the listing is regional, and some regions have different "average" meld score at transplant that others. That, I believe, has something to do with the number of donors, vs number of people on wait list in the region or something like that (and i may be wrong).

In the area I live in, we have 3 transplant centers....Methodist Dallas, Baylor Dallas and Baylor All Saints, in Fort Worth. We are listed at Baylor Dallas. At the time we went through evaluation, we were told that because Baylor has two transplant hospitals relatively close by, we could have a "dual listing" at Baylor Dallas and Baylor All Saints, because the line for the region literally runs through Dallas and Ft. Worth. By having the "dual listing", which ever hospital had the liver available is the hospital we woudl go to. This does not happen everywhere, but Baylor got an exception, because they have two transplant facilities....Charlie may be able to explain this better than me.

But, as I understand it.....the average meld score at time of transplant in our region may be like 15-20 (and I have not looked at the numbers lately), where in NY it could be likke 25-30.....again, not clear on why it differs from region to region. But, the database for UNOS is the main database in the US for organ procurement and it's branched out from region to region from that main database.....I am pretty sure.

Mer

Posted 6/23/2011 4:58 AM (GMT 0)
Hi Mer,

Does Texas have a motor cycle helmet law?  It has been my understanding that the wait is shorter in Florida and Texas because there is no helmet law.  I have seen it posted on the forum about FL not having required helmets, but have never seen it posted about TX.

Thanks.

Posted 6/23/2011 10:17 PM (GMT 0)
http://optn.transplant.hrsa.gov/data/

This is the best site ever!

YOu need to be pretty comfortable with computer stuff to work around it.

But you can put your location, organ, sex, diagnosis, MELD score, blood type and find out how many on the list for YOUR organ.

And you can sort of see that there are very few waiting over the number that is typical in your area. I could see that Mike was one of 3 males with a MELD over 21 in O POS with Hep C. And he got the call in 2 or 3 weeks!!!!!

Good luck.

Carol
Posted 6/26/2011 6:16 PM (GMT 0)
Thanks for all the info, I went to the site, and it has alot of info . .more if you know what your doing!!LOL!! When we go up for evaluation in 3 weeks, I'll find out then "if" and 'where' he will be listed. With us living in FL and the transplant in PA, we may have multiple listings?!? I don't know for sure yet.

Mama Lama
How is Mike doing? Are you still in Miami?

Also, everyone, what is viral load and how is it determined?

thanks again to all for your help . .I have learned sooo . . much from all of you and we are both (me and hubby) very thankful for advise, input, experiences and knowledge you share!!

Debbie
Posted 6/26/2011 7:02 PM (GMT 0)
Debbie, here's a definition for you:

"Viral load is a measure of the severity of a viral infection, and can be calculated by estimating the amount of virus in an involved body fluid. For example, it can be given in RNA copies per milliliter of blood plasma."

The higher the viral load, the worse the infection.  My VL went from 38,000 to 68,000 when the liver cancer returned.  That is because liver cancer or another "infection" in the body will have an effect on the hepatitis virus.  The VL can escalate or decrease, in response to what is happening in the body.

Hugs,

Connie 

Posted 6/26/2011 7:12 PM (GMT 0)
thanks Connie . . I looked it up in several places on the internet and it kept referring to HIV and AIDS. We have never been given a viral load # from any of hsi doctors . I have a list started for the transplant team, and that is on there!! Any suggestions for questions for the team will be greatly appreciated!

Thanks

Debbie
Posted 6/26/2011 7:28 PM (GMT 0)

Debbie, you might want to scan through my thread, My Transplant Evaluation, to see if you have any questions about the tests or anything else that you don't quite understand.

Hugs,

Connie

Posted 6/28/2011 12:34 AM (GMT 0)
Mike's pre transplant viral load was 778,000.

Mike post transplant viral load at 7 weeks post was 15,500,000 VERY HIGH.

Evidently, with the immune system artifically suppressed and with active Hep C, the virus is going crazy!

They will watch it over time.

I have to find the paper, but I think it was 1.7M in 2003!!!  When he had Interferon/Ribavarin treatment.

Docs at Miami are considering another treatment cycle. Mike not excited.

He had bloods today, June 27th and the counts were a little better. They thought he was having rejection symptoms last week, but are more satisfied with liver function, kidney function, and cancer markers this week.

Whew! 

Today he drove 170 miles, by himself to have the blood work, took a nap.  Then did a big grocery shopping while I took the kiddos in the pool, took a nap. And then we took the kids to a movie...Mr. Poppers Penguins!  We have 3 grandkids here for a week while their folks move into a new house in Connecticut.  Just a normal June day...

Whew!

Post Edited (MamaLama) : 6/27/2011 6:53:58 PM (GMT-6)

Posted 6/28/2011 3:00 AM (GMT 0)
Wow ML, Mike has had a big day and so have you!! how long before he can be treated for the Hep C? That is one of my questions to the TP team when we go for evaluation . . Phils Hep C is active too.

We got our travel info from the VA today . . 3 weeks from tomorrow and we will be heading to Pittsburgh.

You and Mike have been a real positive influence for me . . I feel very close to you and Connie too . . we are all in the same state, different coasts, but still close!!

thank God it's not rejection issues!!


Keep me posted

Debbie
Posted 6/28/2011 3:32 AM (GMT 0)
Debbie, Good luck in PA. That will be quite an adventure. I think Mike would have liked the evaluation more compressed...his evaluation, like Connie's, seemed to go on forever...longer even. and he had some hospitalizations during that period as well as he kept having that acute rental failure pop up!

Pam and Ron (RC Moonpie) went through the transplant wait and got the call in, I think, February this year. I hung on every post and began reading their blog, with photos. I cried my eyes out the day he got the call...it could be Mike SOON. and while it didn't seem like soon at the time, it was only 3 months later that Mike got his call!

It is a miracle they can do transplants in the first place. Yes, a miracle.

After his evaluation we packed our bags, like before the babies were born, got doubles of everything, shampoo, etc. Changed the stupid suitcases whent he weather got warmer. And eventually kept them in the car thinking we might be too far from home to go home to get them the day of THE CALL.

And as most everyone knows, I was not in town when he DID get the call. His daughter threw some stuff in a grocery bag for she and her daughter and headed to Miami. I was in South Carolina and had a mad dash on my hands!

He didn't have some of the right things in his bag...as you may be staying locally after his actual hospital time, make sure you have comfy stuff. We got him some gym shorts with easy elastic waists (and pockets...because they sent him home with a drain. He could keep the drain in the pocket and not feel like a monster going back and for th to the clinic!). He had packed golf shorts that needed a BELT. No belts!

Best to you both,

Carol and Mike
Posted 6/28/2011 3:54 AM (GMT 0)

Carol, did you also have a BP cuff and scale in his bag?  That is emphasized at Mayo.  I'm sure it's because they want you to start learning to use them every day.

Hugs,

Connie

Posted 6/28/2011 4:42 AM (GMT 0)
No. They wrote us a script for one at discharge. We had already been doing it at home. So now we have 2. We also have two glucometers as blood sugar has been a problem both before and after! Best to bring if you have. We also did a good bit if dressing changes with drain. So vest to have gloves. They gave us dressings and tape. The drain had to be emptied and measured every 4 hours and it was in for a while when we left hosp. (ick.)
Posted 6/28/2011 5:03 AM (GMT 0)

Carol, I haven't had any blood sugar problems thus far, though I know that's a possibility after transplant.  If that should happen, they can just call the speciality pharmacy along with all the other drugs they want sent to the hospital (a month's supply of everything.)  In fact, it would be best for them to prescribe the BP cuff and scale (I don't have either at home) and have the pharmacy bill Medicare for "durable medical equipment."  I also may need a hospital bed after discharge, as I only have one bed and one bedroom, which will go to the caregiver(s.)

I've had drains before--lots of them--and went home with many after abdominal surgeries.  It is a bit icky.

Hugs,

Connie

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