Re: - living donors

[Guest guest]

,

> I'd really be forceful about the living donor option. Find out if

the Medical College of

> Virginia will see you. They've done more living donor tx's than

anyone else. I wrote a

> letter to NEMC stating that I wanted to pursue the living donor

possibility, (to tx

> team--Dr. Freeman-- and my g.i. doc --and DiNapoli) and

that's when they got

> serious about talking to me about it.

We were supposed to meet with Dr. Freeman. But they called and

cancelled twice. We see Dr. Kaplan next Wednesday - hopefully we can

reschedule soon.

They knew my case manager at Health Source was

> encouraging me to go the Medical College of Virginia Route. The

squeaky wheel gets the

> grease, I suppose.

> I'd love to meet with you and Ed. I've hoped that we'd see each

other when I was down at

> NEMC and you were, too. Have you talked to about the support

group meetings (First

> Tuesday of the month in the conference room on 4th floor)? I'll be

there in February if

> weather and health permit.

I'd love to go to a support group meeting. Ed is a very private person,

though. He says he won't go.

> The latest on living donor: Kate is scheduled for tests on July 28 &

29, Feb. 4 & Feb 11.

> If she passes all of these tests and doesn't need any other tests,

I'll hopefully have a

> new liver by March. Now, I just have to pray that I have no more

infections before then.

We'll be praying too.

>

> There is one thing I know. I think that NEMC has a wonderful group

of G.I. docs, and their

> success rate on transplants is tops.

We totally agree. It's just frustrating sometimes. Ed doesn't

complain about much and if I don't speak up no one seems to pay him

much attention (so it seems). He says they are busy with patients who

are sicker than him (like you!) and I agree, but, I feel that he

deserves the full attention of the Dr.s while he is there.

We are getting good care. We just have to really

> advocate for ourselves, and when I'm sick, that's rough. But in

years past, when I lived

> in other parts of the country, I was seen at other " big-named "

centers, and the docs at

> NEMC seem to be the ones who care most about me as a patient and are

so aggressive with

> their treatment. I trust Dr. Lee implicitly and will to the end of

this ordeal.

>

> I hope Ed is doing well. Take care of yourself. Maybe we can meet

at NEMC in FEb.

I will try and make it. Is it February 1st? In the evening? I'll

have to make arrangements to get out of work early if possible.

Best of luck with all of the testing.

Gracie and Ed

>

> Gracie and Ed Reynolds wrote:

>

> > Hi ,

> >

> > Your email made me sad. We have a connection because you and my

> > husband both see Dr. Lee in Boston (although Ed sees Dr. Kaplan

> > regularly and hardly ever sees Dr. Lee). It seems as though this

> > system for transplants is not fair, especially to those with PSC.

We

> > were supposed to meet with the transplant team at the end of this

month

> > (rescheduled from last month) to discuss my being a living donor for

> > Ed. They called a couple of days ago saying they couldn't make that

> > meeting either. I was very discouraged. They said maybe we should

> > discuss it with Dr. Kaplan. He told us to talk to them. I don't

know

> > - maybe it isn't something they think would work for us but I wish

> > someone would just tell us one way or the other.

> >

> > I'm sorry about your experience and I hope and pray that you and

Kate

> > can move ahead on the operations as soon as possible. Please have

> > keep us informed, we are not that far from Boston and would

like

> > to visit (if you don't mine) if the event should occur.

> >

> > Gracie and Ed

> >

[Guest guest]

Gracie,

I'm going to e-mail DiNapoli and ask if it's okay if you come

to the meeting.

Also, check in with him, if you can, while you're down at New England

Med. He's on the fourth floor. Call before you come and see

if you can set up an appointment with him. I think you need his permission

to go to the group. But also, I think just a contact with him should

be all that's needed.

I really look forward to seeing you there. Yes, it's Tuesday

Feb. 1. If Mike gives you the OK, I can meet you before the meeting

in the atrium on the third floor, and then I can show you where they meet.

I'll bet if Ed goes, he'll like it.

Good luck with Dr. Kaplan.

Gracie and Ed Reynolds wrote:

,

> I'd really be forceful about the living donor option. Find out

if

the Medical College of

> Virginia will see you. They've done more living donor tx's

than

anyone else. I wrote a

> letter to NEMC stating that I wanted to pursue the living donor

possibility, (to tx

> team--Dr. Freeman-- and my g.i. doc --and DiNapoli) and

that's when they got

> serious about talking to me about it.

We were supposed to meet with Dr. Freeman. But they called and

cancelled twice. We see Dr. Kaplan next Wednesday - hopefully

we can

reschedule soon.

They knew my case manager at Health Source was

> encouraging me to go the Medical College of Virginia Route.

The

squeaky wheel gets the

> grease, I suppose.

> I'd love to meet with you and Ed. I've hoped that we'd see

each

other when I was down at

> NEMC and you were, too. Have you talked to about the

support

group meetings (First

> Tuesday of the month in the conference room on 4th floor)?

I'll be

there in February if

> weather and health permit.

I'd love to go to a support group meeting. Ed is a very private person,

though. He says he won't go.

> The latest on living donor: Kate is scheduled for tests on July

28 &

29, Feb. 4 & Feb 11.

> If she passes all of these tests and doesn't need any other tests,

I'll hopefully have a

> new liver by March. Now, I just have to pray that I have no

more

infections before then.

We'll be praying too.

>

> There is one thing I know. I think that NEMC has a wonderful

group

of G.I. docs, and their

> success rate on transplants is tops.

We totally agree. It's just frustrating sometimes. Ed doesn't

complain about much and if I don't speak up no one seems to pay him

much attention (so it seems). He says they are busy with patients

who

are sicker than him (like you!) and I agree, but, I feel that he

deserves the full attention of the Dr.s while he is there.

We are getting good care. We just have to really

> advocate for ourselves, and when I'm sick, that's rough. But

in

years past, when I lived

> in other parts of the country, I was seen at other "big-named"

centers, and the docs at

> NEMC seem to be the ones who care most about me as a patient and

are

so aggressive with

> their treatment. I trust Dr. Lee implicitly and will to the

end of

this ordeal.

>

> I hope Ed is doing well. Take care of yourself. Maybe

we can meet

at NEMC in FEb.

I will try and make it. Is it February 1st? In the evening?

I'll

have to make arrangements to get out of work early if possible.

Best of luck with all of the testing.

Gracie and Ed

>

> Gracie and Ed Reynolds wrote:

>

> > Hi ,

> >

> > Your email made me sad. We have a connection because you

and my

> > husband both see Dr. Lee in Boston (although Ed sees Dr. Kaplan

> > regularly and hardly ever sees Dr. Lee). It seems as though

this

> > system for transplants is not fair, especially to those with PSC.

We

> > were supposed to meet with the transplant team at the end of this

month

> > (rescheduled from last month) to discuss my being a living donor

for

> > Ed. They called a couple of days ago saying they couldn't

make that

> > meeting either. I was very discouraged. They

said maybe we should

> > discuss it with Dr. Kaplan. He told us to talk to them.

I don't

know

> > - maybe it isn't something they think would work for us but I wish

> > someone would just tell us one way or the other.

> >

> > I'm sorry about your experience and I hope and pray that you and

Kate

> > can move ahead on the operations as soon as possible. Please

have

> > keep us informed, we are not that far from Boston and would

like

> > to visit (if you don't mine) if the event should occur.

> >

> > Gracie and Ed

> >

------------------------------------------------------------------------

WEMedia.com empowers persons with disabilities to build a strong and

vibrant community.

http://click./1/682/4/_/24674/_/948249379/

-- Talk to your group with your own voice!

-- /VoiceChatPage?listName= & m=1