Re: Organ donation

[Guest guest]

I picked up the brochures from Mid America Transplant Services and spoke with a rep there for quite some time. Initially they gave me generic brochures on donation, but when I got back to my vehicle and flipped through one, and realized it didn't contain everything I was hoping. So, I went back in and requested any information they had regarding living donors, specifically liver. She informed me that they do not have a program implemented, at this time, for altruistic donations with a few exceptions in adult to child transplants. Apparently, they did an adult-to-adult (stranger) tx and ran into complications with the insurance company. After fighting with the insurance company, of the donor, for a lengthy period of time, they decided not to do them until they can work out more of the quirks. She said she was afraid for us to promote live donor transplants, when in fact, there is no program implemented at this time. I had no idea that altruistic living donation was discouraged at this time!!! She said they have a woman that registered with them 3 years ago, to be a living liver donor, but.... Twice they gave her the go ahead for adult-to-child tx, but both children ended up with a cadaveric liver prior to the schedule LDLT. The thought of having a willing, even anxious, liver donor that is not allowed to donate her liver, blows my mind. I explained that I have PSC and have many awesome friends in this support group. I went on to explain that while she was relaying this story I kept thinking, but one of my friends could be getting a new lease on life! She was very nice, and willingly answered every question I had for her (at least that she was capable of answering).

I walked away with the generic donation brochures, as well as brochures on living donors (yes, it even included a paragraph on the possibility of LDLT!) as well as registration forms for organ donation. They are forms, that are to be signed, witnessed and then returned to MATS. Then, the names are entered into the donor system. She said it does not "insure" that the deceased will be a donor (because family still has the last say) but it gives them more evidence to convince the surviving family members that it was, in fact, the wishes of the deceased.

So, I have two brochures and a registration form to add to the packets that are handed out to golfers at the tournament. If the ALF opts to just add the brochures to their kiosk, I plan to set up a table where those interested can register as a donor. , at MATS, told me I can sign off as the witness on every one of the signed forms, if need be, as long as the signatures were witnessed.

I am now praying that all the quirks are worked out with the altruistic live donor program, and want to find out what can be done to have legislation implemented that allows a person to ensure that their wishes to be a donor, upon death, be granted regardless of objections by the family of the deceased!

Sorry this is so lengthy, I just wanted to share the info. I got yesterday. Many of you may have known some (or all) of this, but it was a learning experience for me!

PSC & UC dx '84, chronic pancreatitis '97

[Guest guest]

Yes, you can sign as a witness on the

drivers license/form…we just worked the Kentucky State Fair and witnessed

tons of signatures…it was WONDERFUL!!!

I know somewhere in New York, Omaha and the University of Cincinnati do live liver

transplants but I know here in Kentucky that is not even a consideration..Barb, do you have any

suggestions on how to find this out???

Re: Organ

donation

I picked up the brochures from Mid America Transplant Services

and spoke with a rep there for quite some time. Initially they gave me

generic brochures on donation, but when I got back to my vehicle and flipped

through one, and realized it didn't contain everything I was hoping.

So, I went back in and requested any information they had regarding living

donors, specifically liver. She informed me that they do not have a

program implemented, at this time, for altruistic donations with a few exceptions

in adult to child transplants. Apparently, they did an adult-to-adult

(stranger) tx and ran into complications with the insurance company.

After fighting with the insurance company, of the donor, for a lengthy period

of time, they decided not to do them until they can work out more of the

quirks. She said she was afraid for us to promote live donor transplants,

when in fact, there is no program implemented at this time. I had no idea

that altruistic living donation was discouraged at this time!!! She said they

have a woman that registered with them 3 years ago, to be a living liver donor,

but.... Twice they gave her the go ahead for adult-to-child tx, but both

children ended up with a cadaveric liver prior to the schedule LDLT. The

thought of having a willing, even anxious, liver donor that is not allowed to

donate her liver, blows my mind. I explained that I have PSC and have

many awesome friends in this support group. I went on to explain that

while she was relaying this story I kept thinking, but one of my friends could

be getting a new lease on life! She was very nice, and willingly answered

every question I had for her (at least that she was capable of answering).

I walked away with the generic donation brochures, as well as

brochures on living donors (yes, it even included a paragraph on the

possibility of LDLT!) as well as registration forms for organ donation.

They are forms, that are to be signed, witnessed and then returned to

MATS. Then, the names are entered into the donor system. She said

it does not " insure " that the deceased will be a donor (because

family still has the last say) but it gives them more evidence to convince the

surviving family members that it was, in fact, the wishes of the deceased.

So, I have two brochures and a registration form to add to the

packets that are handed out to golfers at the tournament. If the ALF opts

to just add the brochures to their kiosk, I plan to set up a table where those

interested can register as a donor. , at MATS, told me I can sign off

as the witness on every one of the signed forms, if need be, as long as the

signatures were witnessed.

I am now praying that all the quirks are worked out with the

altruistic live donor program, and want to find out what can be done to have

legislation implemented that allows a person to ensure that their wishes to be

a donor, upon death, be granted regardless of objections by the family of the

deceased!

Sorry this is so lengthy, I just wanted to share the info. I got

yesterday. Many of you may have known some (or all) of this, but it was a

learning experience for me!

PSC & UC dx '84, chronic pancreatitis '97

[Guest guest]

--- In , " -Tinnell, " > I know

somewhere in New York, Omaha and the University of Cincinnati do

> live liver transplants but I know here in Kentucky that is not

even a

> consideration..Barb, do you have any suggestions on how to find

this

> out???

,

40 centers have done a total of 182 living donor transplants this

year. I went to http://www.optn.org/latestData/advancedData.asp to

determine this. I chose Transplant for step 1, Region for step 2 and

Transplant Center for step 3. In the Optional selections I put:

Organ Liver, Year 2004 and Donor Living Donor. This generated a

table of centers and which region they are in (all regions have had

at least 1 living donor transplant this year). The state appears as

part of the centers code and name. NY Strong Memorial and PA Univ of

Pittburg Med Center have done the most LDLT with 16 each. 12 of the

centers have only done 1 LDLT this year.

Tim R

[Guest guest]

Thank you SOOOO much for telling me how you got that...I don't know how

to get access to all the stuff you all know...that is why I am so glad

you all DO!!!

That is outstanding 182 living donor transplants have been done this

year...

Re: Organ donation

--- In , " -Tinnell, " > I know

somewhere in New York, Omaha and the University of Cincinnati do

> live liver transplants but I know here in Kentucky that is not

even a

> consideration..Barb, do you have any suggestions on how to find

this

> out???

,

40 centers have done a total of 182 living donor transplants this

year. I went to http://www.optn.org/latestData/advancedData.asp to

determine this. I chose Transplant for step 1, Region for step 2 and

Transplant Center for step 3. In the Optional selections I put:

Organ Liver, Year 2004 and Donor Living Donor. This generated a

table of centers and which region they are in (all regions have had

at least 1 living donor transplant this year). The state appears as

part of the centers code and name. NY Strong Memorial and PA Univ of

Pittburg Med Center have done the most LDLT with 16 each. 12 of the

centers have only done 1 LDLT this year.

Tim R