Re: being listed

[Guest guest]

(the 1st),

You are so very strong...please don't EVER forget that! Fear is an

emotion that we cannot let take over...and for 21 years, you have

done extremely well. I know I am not saying this from only MY point

of view, but many others as well...you ARE an inspiration.

Your friend,

(the 2nd)

> Okay, I guess it's time to come clean about the way I'm feeling and

get some

> help here. As I wrote before, I am in the midst of my 2nd

cholangitis

> attack since my last ERCP on 2/21. I was told that if I continued

to get attacks

> every 4 wks., or more frequently, the tx doc wanted to see me

again stating

> that he would try to get me listed on the length and frequency of

attacks.

> Now, here I am and I am finding it hard to make that phone call.

Why? Because

> I am afraid, plain and simple. I have been beating myself up

because I

> haven't called him, and because I feel like I'm being silly. I

feel like I'm the

> only one dumb enough to avoid calling the doc where I might

actually begin a

> road to recovery. So, I decided to write and ask others how they

felt about

> the prospect of being listed. I'm always harder on myself than

anyone else

> could be, and I thought maybe I'm beating myself up about

something that is

> completely normal for patients to go through prelisting/pre-tx.

It seems so ma

> ny of you here need to be listed and tx and would give your right

arm to be

> listed and I feel like I'm so ungrateful. But, the fact of the

matter is no

> matter how bad I feel I am used to living with PSC (I have for 21

years now)

> and know what to expect. I will no longer no what to expect...not

pre-tx,

> when tx will come, how I will do during or after surgery, etc. If

anyone

> experienced this type of procrastination or unwillingness to give

up what they are

> familiar with please write and let me off the hook. My family and

friends

> don't understand my reluctance to call or to be tx and that makes

it harder

> for me. At least I am rational enough to know that they can't

possibly

> understand since none of them have been through this before. This

is where you all

> come in. If anyone can offer a piece of advice for calming my

nerves or

> getting past feeling guilty for not calling, please, send it my

way.

>

> Thanks,

>

[Guest guest]

DITTO!!

Bobby & Anne

Re: being listed

[Guest guest]

,

I ditto Lee's wish. Keep us all updated, OK?

Ricky

Re: being listed

This sounds like progress . I will keep my fingers crossed that you are placed high on the list.Lee> Sorry I didn't have time to get into any details yesterday, but here's > a little better description of what took place yesterday with the > hep. The doc walked in and asked how I was, and gave me a recap of my > last ERCP findings (and the letter from the endoscopist). He told me > he'd gotten a note about my recurrent cholangitis attacks and asked > when they had taken place. I opened my notebook and gave him the > exact dates, the antibiotic taken and the length of time I was on it. > The next thing out of his mouth was, "We need to open up the > transplant thing again." >

[Guest guest]

,

I know everything is going to go well for you!.

Positive thoughts going your way..

Andi in verdant(at least for now) Modesto, California

CrazrNever04@... wrote:

When she sensed I was anxious about that she said we never know until we try. I just took a deep breath and calmly explained that with PSC you get used to coming across things you have no control over. That was a reminder to myself, actually.

Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone.

[Guest guest]

Hi Mo

I am with Bill - if you need some muscle, let us know. We have a couple things in common I didn't realize. I have MVP too (and a stubborn daughter).

Sorry about your grandmother.

in Cleveland

CrazrNever04@... wrote:

I think she's trying to give me a heart attack!!! Silly, kid!

(MO)

PSC & UC dx '84, chronic pancreatitis dx '97, workup for listing begins 6/7

[Guest guest]

Thanks for all the happy thoughts regarding being listed. However, my body has decided to throw me for yet another loop! I got pretty sick over the weekend and finally had to bring me to the hospital Sunday evening. The vomiting wouldn't stop, but by the time they got that under control the bloodwork was returned and showed another bout of cholangitis. Yes, they kept me!

Dr. Aliperti, my endoscopist, was so cute...he asked me if this was the first attack I've had since the ERCP's in Feb. I just chuckled and informed him this was my 5, and it has only been 6 days since I took my last dose of Cipro. He didn't take that news well. Don't worry, I consoled him. :-) He decided that maybe this would help me move up on the list. I sure hope so.

For those of you I owe an email to, know that I haven't forgotten you.

Well, enough for now. I'll write more later.

(MO)

[Guest guest]

,

I'm so sorry that you ended up at the hospital. You can forget my email

about the brochure. Don't even think about it!!!!

I hope that this moves you up the list, hang in there. Best wishes

coming your way.

Lee

> Thanks for all the happy thoughts regarding being listed. However, my

> body has decided to throw me for yet another loop! I got pretty sick

> over the weekend and finally had to bring me to the hospital

> Sunday evening. The vomiting wouldn't stop, but by the time they got

> that under control the bloodwork was returned and showed another bout

> of cholangitis. Yes, they kept me!

>

> Dr. Aliperti, my endoscopist, was so cute...he asked me if this was

> the first attack I've had since the ERCP's in Feb. I just chuckled

> and informed him this was my 5, and it has only been 6 days since I

> took my last dose of Cipro. He didn't take that news well. Don't

> worry, I consoled him. :-) He decided that maybe this would help me

> move up on the list. I sure hope so.

>

> For those of you I owe an email to, know that I haven't forgotten you.

>

> Well, enough for now. I'll write more later.

>

> (MO)

>

>

[Guest guest]

,

I'm so sorry to hear that you are having another bout of

cholangitis. I'm glad they kept you. I bet the frequent

attacks will move you further up the list. My husband had 3 in

about a 3-4 month period about 3 years ago and that's what got him

listed. Since the listing no more cholangitis attacks.

In 1996 Dr. Aliperti did an ERCP on my husband and stented him. We

really liked him. My husband told me that while they were getting

ready to give him the drugs Dr. Aliperti came by to talk to him. My

husband was wearing his senior high school class ring (from 1963).

Aliperti was fascinated by that ring. Ron had to explain all about

senior class rings, etc. Just wanted to pass on a cute

story.

Our thoughts and prayers continue to flow.

Judy from Illinois (Husband Ron - PSC 2/01)

Dr.

Aliperti, my endoscopist, was so cute...he asked me if this was the first

attack I've had since the ERCP's in Feb. I just chuckled and

informed him this was my 5, and it has only been 6 days since I took my

last dose of Cipro. He didn't take that news well. Don't

worry, I consoled him. :-) He decided that maybe this would

help me move up on the list. I sure hope so.

[Guest guest]

Well I guess I missed a lot. Sorry I haven't been reading the

posts. I'm glad to hear you got listed. If you have any questions

about getting an exception let me know. The nurse that takes care

of that at my hospital I was very impressed with. Let me know how

things go with that.

I'm sorry things aren't really getting better with your

grandmother. It sounds like you have a very full plate right now.

If there is anything I can do for you let me know, even if you just

need some one to talk to.

So why is not going to get her blood work done? Is she

afraid of what the docs might find or is she just letting herself

get too busy, or is it something else. I hope she does it if for no

other reason then just to keep you from stressing. Well my thoughts

will be with you and I hope for the best for you.

Monte

> Hey!

> I just wanted to give an update on this listing thing. Wed. I

called the tx

> coordinator and Thurs. " my " coordinator returned my call. We

talked for

> nearly an hour! She said she had not received my chart from Dr.

Crippin yet so

> didn't know where things stood. She then took all of my info.,

asking me a

> TON of questions and then began to explain my disease and how it

causes the

> liver to fail. I had to smile. However, we did finally get to

the Q & A

> session. The only thing that she told me that I did not like

is...that UNOS very

> rarely approves an " exception " ! My heart sank! When she sensed

I was

> anxious about that she said we never know until we try. I just

took a deep breath

> and calmly explained that with PSC you get used to coming across

things you

> have no control over. That was a reminder to myself, actually.

>

> She went on to explained where we go from here. She said that

they will

> schedule me for back-to-back appts. for (possibly, if Nov.'s

isn't considered

> recent enough) an MRI, and bloodwork (ERCP & colonoscopy are VERY

recent, so

> not required). Also, because I have a mitral valve prolapse

(that I'm

> medicated for) so I have to see a cardiologist and do a stress

echo to ensure that my

> heart is strong enough to endure the surgery. (Yikes! That made

me a

> little nervous.) She informed me that I would be meeting with a

benefits

> coordinator and social worker. But, she added, Dr. Crippin is on

vacation until next

> Thurs. so she wanted to warm me that I probably wouldn't hear

from anyone

> again until next Fri. She said she would send him an email just

to see if he'd

> respond, and got off the phone. Thirty minutes later she called

me back.

> She said Dr. Crippin called her as soon as he got her email and

all tests are

> set up for 6/7 & 6/8, and possibly the 9th if it's deemed

necessary. Her

> whole demeanor changed and she has been talking about surgery

ever since. I

> have now spoken to the benefits coordinator and they are approved

as my tx

> center. I don't know what Dr. Crippin said to them, but we

are " all systems go "

> at this point. Everyone now is speaking as if there is no doubt

that the

> surgery will take place! I'm comforted by that (mostly), but

curious to know

> what the doc said. Granted, I'll feel better when the final word

comes from

> UNOS!

>

> Sorry for being so detailed, but I haven't had much time to

process this

> latest news. My grandmother is failing, so I went to see her

yesterday. I

> think the family has come to terms with the idea that she may not

be with us much

> longer. Our brains have wrapped around that, but our

hearts...well, that's

> a different story! Also, for those of you who have asked, no,

still

> has not seen the doc for bloodwork! I think she's trying to give

me a heart

> attack!!! Silly, kid!

>

> (MO)

> PSC & UC dx '84, chronic pancreatitis dx '97, workup for listing

begins 6/7