tx center question

[Guest guest]

OK, I have a question, generalized, but I was wondering, for those of you listed, have been listed, etc. If your listing status changes does your transplant center call you? My brother was #1 for almost a month, then today they tell him he dropped to #3 about a week ago (they redid blood work today and had a clinic appt.). No one ever called to tell us or even sent an email.

I know his nurse coordinator is pregnant, and although I am happy for her, I wonder if my brother hasn't just gotten the short end of the stick. It seems like we think everything is going fine, then slam, it's not what we are thinking. Since the did the insisted ERCP in July, he health has gone down hill, he spent a week in ICU, cause of cholangitis directly related to the stent they weren't confident about in the first place (I voiced loudly I wasn't a fan of the idea). Every time he has a clinic appt it is almost always with a different doc, that says " blood work looks fine, your listing status is ___ and we will see you in a month or so " . They haven't read his file, they tell him he is fine, and his symptoms are just cause he is sick (well duh, do you think he would be there if he was healthy?)

I don't know, I know you should be very positive and optimistic with someone like that, but it is really hard to do so when you think the tx center doesn't have your best intentions at heart. The scary thing for us, is, this is suppose to be one of the top rated hospitals for 2006, we just have yet to see it. Maybe I am over reacting, but I was just wondering what some other's experienced with their transplant centers. in TexasBrother, , 31, UC & PSC-- Some of my crazy lil' blogs & website....

www.ancestralroots.blogspot.comwww.savedusty.blogspot.comwww.mycrazylilworld.blogspot.com

www.mtmcreationsonline.com

[Guest guest]

Hi ,

This sounds really really frustrating. And, completely different than

Carl's transplant center (OHSU). Their policy is they do not even tell

patients their listing rank because it can change so rapidly. All

they told us when he got listed is " he's up there. " Sounds like they

are creating more of a roller coaster for you guys than is necessary

(as if it isn't enough of one already!). So sorry to hear you are

going through this. I check your blog regularly, hoping each day that

I see news that he's been called.

-Dawn

www.carlanddawn.blogspot.com

>

> OK, I have a question, generalized, but I was wondering, for those

of you

> listed, have been listed, etc. If your listing status changes does your

> transplant center call you? My brother was #1 for almost a month, then

> today they tell him he dropped to #3 about a week ago (they redid

blood work

> today and had a clinic appt.). No one ever called to tell us or

even sent

> an email.

>

> I know his nurse coordinator is pregnant, and although I am happy

for her, I

> wonder if my brother hasn't just gotten the short end of the stick. It

> seems like we think everything is going fine, then slam, it's not

what we

> are thinking. Since the did the insisted ERCP in July, he health

has gone

> down hill, he spent a week in ICU, cause of cholangitis directly

related to

> the stent they weren't confident about in the first place (I voiced

loudly I

> wasn't a fan of the idea). Every time he has a clinic appt it is almost

> always with a different doc, that says " blood work looks fine, your

listing

> status is ___ and we will see you in a month or so " . They haven't

read his

> file, they tell him he is fine, and his symptoms are just cause he

is sick

> (well duh, do you think he would be there if he was healthy?)

>

> I don't know, I know you should be very positive and optimistic with

someone

> like that, but it is really hard to do so when you think the tx center

> doesn't have your best intentions at heart. The scary thing for us, is,

> this is suppose to be one of the top rated hospitals for 2006, we

just have

> yet to see it.

>

> Maybe I am over reacting, but I was just wondering what some other's

> experienced with their transplant centers.

>

> in Texas

> Brother, , 31, UC & PSC

>

> --

> Some of my crazy lil' blogs & website....

> www.ancestralroots.blogspot.com

> www.savedusty.blogspot.com

> www.mycrazylilworld.blogspot.com

> www.mtmcreationsonline.com

>

[Guest guest]

Dear ,I can't answer your concerns but just want to say that you are a wonderful sister and caregiver.Hang in there and keep the hospital on their toes !LeeI don't know, I know you should be very positive and optimistic with someone like that, but it is really hard to do so when you think the tx center doesn't have your best intentions at heart.  The scary thing for us, is, this is suppose to be one of the top rated hospitals for 2006, we just have yet to see it.  Maybe I am over reacting, but I was just wondering what some other's experienced with their transplant centers. in TexasBrother, , 31, UC & PSC

[Guest guest]

Dear ,

I don’t think I can help much, except that here in

Queensland, there is no number system…whoever is the sickest and most in

need when the liver becomes available becomes the recipient. This way there is

no expectation for the next liver (and subsequent disappointment if it goes

elsewhere). You have to trust the transplant teams to know who needs the next

one most.

This isn’t very helpful I know, but hang in there. I wish

one of my siblings was half as interested in my health as you are in ’s.

Penny T

I don't know, I know you should be very positive and optimistic

with someone like that, but it is really hard to do so when you think the tx

center doesn't have your best intentions at heart. The scary thing for

us, is, this is suppose to be one of the top rated hospitals for 2006, we just

have yet to see it.

Maybe I am over reacting, but I was just wondering

what some other's experienced with their transplant centers.

in Texas

Brother, , 31, UC & PSC

[Guest guest]

I second Penny & Lee - I too wish one of my siblings is as interested in my health as you are in 's. But I think it's hard for them to face this - I get the feeling they just want me to be miraculously well. But I have a sister-in-law who is fairly involved. She comes with me to some of my doctor's appts. My brother actually took me to the endoscopy on Monday - that only showed that I have a hiatus hernia (in the diaphragm) - that explains the occasional regurgitation I get in my esophagus.

Reply-To: To: < >Subject: RE: tx center questionDate: Thu, 20 Sep 2007 09:21:08 +1000

Dear ,

I don’t think I can help much, except that here in Queensland, there is no number system…whoever is the sickest and most in need when the liver becomes available becomes the recipient. This way there is no expectation for the next liver (and subsequent disappointment if it goes elsewhere). You have to trust the transplant teams to know who needs the next one most.

This isn’t very helpful I know, but hang in there. I wish one of my siblings was half as interested in my health as you are in ’s.

Penny T

I don't know, I know you should be very positive and optimistic with someone like that, but it is really hard to do so when you think the tx center doesn't have your best intentions at heart. The scary thing for us, is, this is suppose to be one of the top rated hospitals for 2006, we just have yet to see it. Maybe I am over reacting, but I was just wondering what some other's experienced with their transplant centers. in TexasBrother, , 31, UC & PSC

Get the device you want, with the Hotmail® you love.

[Guest guest]

- hang in there. Continue to fight for your brother. When my

husband was right there at the top, he moved around depending on blood

work and I was able to keep up with it by going to the UNOS site and

checking our transplant center's list. I new as soon as he moved up

because I checked it often. I also was the one to personally call the

transplant coordinator and insist on updated MELD score when he went

from an 18 to a 22 because I knew that would put him at number one in

his blood type. He had a 22 for a day or two before I got it

straightened out and they updated it.

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

Thank you to each of you who have answered. It is just

frustrating to have these appointments, and then to walk away

feeling as if they are treating it as an elective procedure, as if

someone would wake up one day and say " hey I think I want a liver

transplant " -ARG!!!!

I know waiting is a part of the process, and that isn't what irks me,

it is the consistant inconsistancies that get to us. He will get

the call when the time is right, not because we want this to be over ;-)

Again thanks everyone!

- in Texas

Brother, , 31, UC & PSC

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[Guest guest]

>

> ... If your listing status changes does your

> transplant center call you?

No, and when asked about where on the list I was the answer was very

general - 'near the top' or 'in the top 10', with emphasis on the list

being dynamic, changing all the time so even if I happened to be

number one for my blood type when I asked, when a liver became

available someone else might be listed with a higher MELD.

> ... Every time he has a clinic appt it is almost

> always with a different doc, that says " blood work looks fine, your

listing

> status is ___ and we will see you in a month or so " . They haven't

read his

> file, they tell him he is fine, and his symptoms are just cause he

is sick

> (well duh, do you think he would be there if he was healthy?)

What type of doctor is seeing in clinic? From what you

describe, it sound like surgeons who really can't do their thing until

a new liver is available. The U of Mich center is organized into

pre-transplant, transplant and post-transplant care groups. The

pre-transplant team is there to help patients survive and deal with

end stage liver disease and its symptoms while waiting. If I was doing

OK then the pre-tx clinics were pretty brief as there would not be

much to discuss or any issues to deal with. If has problems

that aren't being dealt with, then you need to ask to see someone who

can do something to provide the relief he needs.

Tim R, ltx #3 7/7/07

[Guest guest]

,

Is the numbering system according to blood

group? If not, can be the first to get a certain liver, even if he is

not first on the list. It is possible that the ones above him on the list have

a different blood group than he does and thus may have to pass on a liver that

is suitable for .

Hang in there,

Chaim Boermeester, Israel.

From: [mailto: ] On Behalf Of Crumbliss

Sent: Thursday, September 20, 2007

06:53

To:

Subject: Re: Re: tx

center question

Thank you

to each of you who have answered. It is just frustrating to have

these appointments, and then to walk away feeling as if they are treating it as

an elective procedure, as if someone would wake up one day and say " hey I

think I want a liver transplant " -ARG!!!!

I know waiting is a part of the process, and that isn't what irks me, it is the

consistant inconsistancies that get to us. He will get the call when the

time is right, not because we want this to be over ;-)

Again thanks everyone!

- in Texas

Brother, , 31, UC & PSC

Messages in this topic (0) Reply (via web post) | Start a new topic

[Guest guest]

,

I think you need to change doctors or get a second opinion. Where do you live in Texas?

Armanarman_shirin@...

tx center question

OK, I have a question, generalized, but I was wondering, for those of you listed, have been listed, etc. If your listing status changes does your transplant center call you? My brother was #1 for almost a month, then today they tell him he dropped to #3 about a week ago (they redid blood work today and had a clinic appt.). No one ever called to tell us or even sent an email. I know his nurse coordinator is pregnant, and although I am happy for her, I wonder if my brother hasn't just gotten the short end of the stick. It seems like we think everything is going fine, then slam, it's not what we are thinking. Since the did the insisted ERCP in July, he health has gone down hill, he spent a week in ICU, cause of cholangitis directly related to the stent they weren't confident about in the first place (I voiced loudly I wasn't a fan of the idea). Every time he has a clinic appt it is almost always with a

different doc, that says "blood work looks fine, your listing status is ___ and we will see you in a month or so". They haven't read his file, they tell him he is fine, and his symptoms are just cause he is sick (well duh, do you think he would be there if he was healthy?) I don't know, I know you should be very positive and optimistic with someone like that, but it is really hard to do so when you think the tx center doesn't have your best intentions at heart. The scary thing for us, is, this is suppose to be one of the top rated hospitals for 2006, we just have yet to see it. Maybe I am over reacting, but I was just wondering what some other's experienced with their transplant centers. in TexasBrother, , 31, UC & PSC-- Some of my crazy lil' blogs & website.... www.ancestralroots.

blogspot. comwww.savedusty. blogspot. comwww.mycrazylilworld .blogspot. com www.mtmcreationsonl ine.com

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[Guest guest]

My son's transplant center never called to tell him his status, he just always called them and ask after he got his blood work done. I know he would move up and down until he finally got his liver this past Feb. He was listed for two years.

Shirley

mother of Tyler