magazine about liver health

[JulieAnn]

I stumbled on a magazine about liver health yesterday and wondered if any of you subscribe and what you think of it?  Do you find it helpful in some way?  It's called "Liver Health Today" and the website is http://www.liverhealthtoday.org/  It's not expensive.  An 18 month subscription that gives you 6 issues is $20.  Their website says "Liver Health Today is the only national magazine dedicated to people with hepatitis B and C." And their Mission Statement says "The mission of Liver Health Today is to assist hepatitis patients and their families in taking control of their own health care by providing current, comprehensive information in one source."

[MissyMouse]

Hey JulieAnn:

I have a subscription to Liver Health Today and have even had an Article published.  Here's a link.




Mouse
P.S.  It's a nice little magazine

[JulieAnn]

Hey Mouse!  It didn't post as a link but as a graphic too small to read.  Could you please post the link?  And why do you think it's a good magazine?  I mean, how does it help you?

[MissyMouse]

Julie,

For some reason I could not get the link to work here.  But I was able to bump up an old thread in the News, Friends forum with a working link.  The Thread is titled "My Story ... Published".  The working link is on the first page of the thread.

Mouse

[JulieAnn]

Hi Mouse,
I just read your article and it was well written and very moving!  Thanks for sharing it with me.  I'm surprised no one else has posted that they are familiar with the magazine, but I don't think the forum has been terribly active this week.  Maybe more folks will be on over the weekend.

This has nothing to do with your story... but you know, from a legal perspective, it disturbs me that the "transplant team" at whatever facility you live near has so much power over a person's life or death.  By that I mean, if your team decides that you, as a patient, are not a candidate for treatment or transplant or retransplant, you're stuck!  And another transplant team at another facility might totally disagree and be willing to treat you, if only you had the resources to move to another city away from all of your family and support.  It's not like if a doctor decides not to treat you that you can just see another doctor in your home town. 

[MissyMouse]

Julie,

It was funny that you posted this when you did because I just got this quarter's magazine in the mail.  Betty and Max, it had a lot of interesting articles that made me think about ya'll.  One was how old it to old to treat and the other was the personal story of a 70 year old man that did treatment and got SVR.

Mouse

[Hank's mom]

Julie -

Like everything else, there are good teams and not so good to down right bad teams. Transplants should be done for the right reasons and that should include specific criteria. It has to be treated with appropriate seriousness. That said, if you really feel you are a candidate, but the local team doesn't, you can ask why - the reasons might make sense - or if you want to explore further, there is nothing to prevent you from exploring other hospitals and/or other cities and states.

Up here in Boston, the demand is so high that our MELD scores and criteria have to be high. We are told that if we are uncomfortable with that, we can see about other places. The one stipulation is that you don't get a tp elsewhere and then go running to the Boston doc to take over - which I understand - it's not fair to those who have waited here for one, and for two, other than an extreme emergency - you made a decision.

Sounds hard, but I do get it - unless I fell off topic - in which case - as Gilda Radner said, "Nevermind"....
Susie

[JulieAnn]

Actually I was the one that fell off topic, but I appreciate your thoughts on the subject.  I guess what bothers me is how the team sort of dangles the threat over the patient, and how they can make life or death decisions seemingly without careful review of the individual case.

For example, there was a thread, and I believe it was on this forum, from someone whose Dad was being denied a transplant because of a previous suicide attempt.  Now, I understand the seriousness of that and realize how precious a donor organ is, truly.  But the man was on antidepressants which can really mess with your brain chemistry.  It was my understanding he had gotten past it, yet the transplant team automatically decided he was not a candidate, regardless of his personal situation.  So it's those kinds of stories that I find troubling.  A small group of people have life and death power, without any kind of review board or higher power to oversee near as I can tell.  So you either die or appeal to another transplant team in another city.  For most people that are that sick, relocating to another city and state is not a doable option.

[robin]

Hey Julie, I don't think the transplant team dangles their power over a patient but rather they have a huge responsibility to ensure to their best ability that the organ they give a patient will be best suited for that particular patient over a different person. Most centers are faced with such a shortage that someone is going to die from lack of an organ. So, in the greater picture, is it a better plan to give the organ to someone who is emotionally stable over one who is not or is being maintained stable through medication? The hardest part of liver failure for me has been the period AFTER transplant. I could easily see how if one did not have lots of stabilizing factors in their life, they could be totally overwhelmed, even if they had never had any history of mental illness. This last 10 months has been more than trying for me and thank goodness I've had Hank as a resource. I had to receive psychiatric approval prior to being listed at all three transplant centers I had been listed at. A donated organ is a precious commodity. Keep your spirits high...robin   

[DougV]

Robin, Susie, and Hank if ya happen to pop in,

I didn't see this answered in the magazine about liver health (Never seen the mag, just wanted to stay on topic.) and Robin I remember you "talking" about it when you were awaiting TP, can yall explain to me the registration part of a tp.

Is registration done by state, not nationally?  If by state can you register in all 50 states?  Or is it by county or something else?  As a requirement do you have to actually live in the state you are registering in?  I see the point about staying in the same state for aftercare, but personally I can't think of a single state I wouldn't live in if it meant living.  Are requirements different from state to state?  Is there a state or states that are "easier" to get a tp in?

Sorry for all the questions, I ain't there yet, but just maybe it's time to do a bit of homework.  Just in case ya know.

Doug

[MissyMouse]

Doug,

First off forgive me for stumbling in on your question to Robin.   I have also had tp listing discussions with my PCP even though like you, I'm not there yet.   It's kind of a plan that has to be pondered ahead of time.  I've also talked with Robin about this in the past.

Here is the way I understand what my PCP told me.  You actually get listed by state by state and even though it's a "national" donor bank.  Some states have higher MELD score requirements, i.e., the bigger the organ demand in a given state, the higher the MELD score requirement.  My PCP says it's really not "supposed" to work this way but unfortunately it does. (My PCP is actualy a nephrologist who deal with a lot of kidney transplant  patients)  If I ever get to the point where I have to get listed, I will list in Arkansas as well as here in Florida.   I'm fortunate enough that my Dad lives in Arkansas not too far from where Robin lives and where she had her TP so I have that option.  My PCP felt that this was a good idea too.

Mouse

[DougV]

Wonder, and maybe it is in the magazine about liver health (Please note still on topic I am.), if there is a list somewhere that would let you easily figure out where might be the "easiest" state to get a tp. 

Something to look into one of these days..................

Doug

[robin]

Doug...when I got listed, different regions comprised several states that belonged to that region (think there are like 10-11 regions). That is how I was listed in Oklahoma and Arkansas at the same time, because they were different regions. Now when your transplant center enters you into UNOS once your MELD is at least a 15 (for all states to be active) then you are listed where ever your score ranks. If a donor organ is available at the hospital you are listed, the highest one at that hospital gets it if they meet the National Standard. If you are not at least a 15 then the organ will go to the highest priority patient at the center closest to the retrieval site. It's about distance as well as MELD, if that makes sense. I'm not good at explaining things but the criteria is the same but the number of people listed at a facility or in a region VS the number or organs donated will influence how quickly you will get transplanted. When they thought I might  need a double organ transplant they flew me to Miami and did further testing and it was decided I only needed a liver, I went back to Oklahoma and had to formally drop my listed status at Miami. Arkansas being new for livers, the organs that are retrieved in Little Rock area, pretty much stay there. I missed a call on one here that ended up going to TN (I think). I know MO is in the same region as CO and TX and OK are in the same regions. You can register in as many regions as you want but each has different testing and follow up so it's expensive and insurance won't usually cover multiple state criteria. Hope this makes some sense and I'm only telling personal experience. Keep your spirits high..robin

[DougV]

Robin,

Thanks and yes that makes sense.  For me, at this time, just gathering background info.  Hope I never need to go through a tp, but if I do, I want the best possible chance.

Speaking of a tp, I know no booze, drugs, or smoking.  Any other automatic exclusion things to watch for?

And on the tp subject, how are you feeling these days Robin?  Think you were under the weather a bit and I'm hoping you're back tiptoeing through the tulips.

Doug

[robin]

You know Doug, the requirements vary from center to center. Oklahoma is by far the strictest I've been exposed to. Arkansas asked if I smoked as part of my H&P but never did any kind of "checks". Pretty much they all just expect you to use common sense in your personal health care. Some things that can prevent you from getting transplanted are other health issues that may overlap, some very obvious and others less so. Everything is set to ensure that the best candidate who will ensure success with the new organ is found. Until there are enough donors, there will be people who get turned down.

My friend who's sister still lives in England, turned 60 and was told she was no longer elgible to receive a kidney trasnplant due to her age. But, that is also an aspect of socialize medicine even though people live well past 60. The oldest person transplanted at UAMS was something like 76 or somewhere around there and he did remarkable. Crazy thing is he was turned down by a couple other centers due to his age but because there are not that many listed in Arkansas, he was listed and trasnplanted here. Go figure.

Keep your spirits high...robin