State to State Laws

[shirleymahoney]

Could someone that maybe has been through a transplant or has looked into guidelines transplants please tell me why I can't seem to get on the list here in Va. because they say i could live another 10 years like this, I mean I'm able somedays to do some house work and somedays I do laundry, I was out at Walmart tonight and with walking around for 15 minutes I thought i was going to just fall down it wiped me out are there different guidelines for different states or requirements to go on the list, my stomach looks like i'm 6 months pregnant in fact i buy maternity clothes now, I sure gets looks from people when i go to the dressing rooms to try them on, I mean I'm 48 years old and never thought i would be buying maternity clothes again, it makes me not want to go anywhere any more and how much Diuretics are they going to put me on before they figure out it isn't working i mean i think 360mg a day is alot and even more at times, Please someone please help me, I 'm just at a loss here

Shirley

[Pam Alexson]

Shirley,

I do not have any expert advise here , only hearsay. What some people have told me and some doctors in fact who have had family members go through the process is that where you live is often important but that they had to figure this out for themselves through the difficult process. I have heard from these sources that many people do move closer to a top transplant center.

I speculate that alot has to do with where the organs are and how quickly they can get them to the top transplant facilities and how near the patients are to these transplant facilities.

I can only encourage you to research as much as possible and to consider the valued opinions of those here who have traveled the path to transplant.

Something in your situation seems really off and I keep wondering if it is that you are down in Virginia.. I wish I knew more factual information and could help you more.

Stay strong and know that we are all here for you,

Pam

[Midge Rollins]

Shirley there are national guidelines about where you are placed on the list. Other than that I think it is up to the Dr's. discretion. I agree with Linda there is something amiss there. I would certainly get in touch with a top HCM center that does transplants. (Cleaveland- Mayo) Your situation is certainly a puzzle. As long as you are not listed you can certainly go to any institution you wish. I met a couple of people at Mayo last week from New Jersey that are waiting. One lives in Rochester the other commutes every 4 months for now. There are ways to do this long distance. My top suggestion to you is get evaluated at one of these and then go from there.

[Scott Stanley]

I agree with Midge on that one. I was living in Kansas City and moved to Lincoln when I was on the list or going through to get listed. My doc in KC said another option was to go to California, so check out your options.

Scott