word on donor

[Guest guest]

Dear All,

Here is a brief update regarding my potential donor. I spoke to Dr.

Chapman last night, the chief of liver transplant surgery, for 30-40

min. and Denver, has in fact, been eliminated as my donor. The overall

opinion of the transplant team, consisting of about 20 people, is that

it is not worth the risk to Denver. It is not his age, or his heart, it

is the overall scenario and they want the " perfect outcome " . I was

prepared to argue and push the issue, but opted not to. If I push for

them to approve him, and they do, but ultimately I am wrong and Denver

suffers as a result of the surgery I will never be able to live with

myself. Besides, I have prayed, as has he, his family and many, many

others that God be in charge of this situation. With all of that

praying going on I have to believe that this is the best thing for

everyone involved.

Dr. Chapman said he thinks I can be transplanted within a year's time

with a MELD of 17 (my current score) and sooner if it continues to

rise. It is possible to get one earlier if a split liver (with a

pediatric patient) becomes available and he assured me that there

weren't many adults small enough to be a candidate for the split liver

transplant. He also told me that they are now doing altruistic live

donor liver transplants (which they were not doing 1.5 years ago). At

times there are people who are willing to donate a portion of their

liver to anyone in need (and do not KNOW someone who needs a

transplant). In this case, like in bone marrow registries, the donor

goes on a list and when a liver patient with the same blood type comes

up for transplant they do the surgery. He said at this time there isn't

anyone on the registry, but that I am a high priority and would be

considered if/when someone does. I was told that they are transplanting

in our region at a MELD of about 21. There are some 30's listed and

some with lower scores that have been transplanted, but typically the

MELD scores are around a 21. I told him that my last set of labs was a

20, I just didn't get them faxed in in time. He said with a 20 he felt

confident that I could be transplanted within a year.

Of course, he said they are willing to work up another donor for me,

if I have someone else that is interested. I told him that I will keep

that in mind, but currently people aren't knocking down my door looking

to have a portion of a vital organ removed. Well, it's true! :-)

This isn't exactly good news, but I know that God has yet to fail me,

and believe that His will should and will be done. Thank you for all of

your prayers, and ask that you continue to do so until this gets

resolved. Knowing that others are praying makes this situation bearable

and Denver's elimination acceptable.

I will keep you all posted of any changed that occur.

Sorry, if this appears that I am talking down to group members, this

email was originally supposed to go out to my family and friends, as

well as the group, but... I forgot to include the groups address when I

sent it out. It's still not my fault...H.E. is at work, and after my UC

flare up I am reluctant to take the Lactalose. I realize I could be

milking the H.E. for all it's worth, but I also realize that no one can

disprove my statement. So, for now ... this darn H.E. is... :-)

Love,

(a.k.a. M1, (MO), Melba, and most formally known as R.

Jett Scherder, and fondly referred to as " dork " by my loving daughter)

:-)

[Guest guest]

Mel1, you are right, we have to look at this as " there is another plan,

and not panic.... " I know that is easier said than done....but it is

true...my husband missed his first chance at a liver transplant because

he was hospitalized at another hospital, too sick to travel...I just

knew he'd never get another call...but a month later, as he was being

discharged his pager went off and they had another one for him...things

happen for reasons, we just don't know it at the time....know that we

are all behind you!!

Bobby & Anne

[Guest guest]

Mel 1, how are you doing?????

Bobby & Anne

[Guest guest]

Anne,

All in all I'm doing okay. I'd like to say terrific, but I'm just not

there yet. I took the news of Denver's elimination well, accept for the

fact that I knew I would have to pass this upsetting news on to my

daughter and brothers and that made my cry.

The problem is I have been sick more than well lately, and it appears

more and more that we can no longer put band aids on my condition --

that these are just symptoms to be contended with as a result of the

cirrhosis. Stenting and antibiotics don't seem to help. When you

combine this ongoing yuky feeling with the loss of , elimination

of potential donor and a few other personal glitches well...it doesn't

leave one feeling good all over.

As crazy as it sounds (and possible indication that I am not the

sharpest knife in the drawer) it really just dawned on me Friday night

the severity of my situation. After 22 years...talk about a SLOW

learner! As I was laying on the couch, covering to rid myself of the

chills I looked down at the trash can I'd been leaning over and the

cold rag hanging on the side and suddenly (I obviously use that term

loosely!) it dawned on me that THIS is my reality. [As I'm scanning the

situation I also hear 's voice echoing, " You're going to get a

lot sicker, mom " ... And another's voice declaring that I've got a lot

of suffering to do in a year (referring to the one in which I am

waiting for a cadaveric liver). Neither meant any harm, in fact

was actually trying to make me feel better about the mood swings I've

been experiencing, and let me know that I have every right to be an

emotional mess.] There are no more " fixes " , no donor (as of yet). I

have been repeatedly told by my endoscopist and hepatologist that I am

VERY high risk for C.C. due to the fact that I have knowingly had PSC

for 22 years (25 since first bout of jaundice).

Periodically throughout the years (and less before I found this group)

the reality and/or gravity of PSC would hit me, but wasn't in the

forefront of my mind. Even since being listed it has all seemed

surreal, and once in a blue moon, while reading a post or an article, I

go wow, PSC sounds really awful. DUH!!! My family laughs at me because

I speak of other PSCers as if THEY are dealing with a serious disease

and I want to help them all. I'm not sure if denial in this form, or

depth, is a good thing overall, but I do believe it has helped me

continue on as well as I have for 22 years. Now, I am beginning to face

the facts.

Don't misunderstand, I came to terms with my mortality in 1997 when

the docs had all but given up hope due to my pancreas and liver. And, I

have been able to state for years the possible outcomes with PSC -

transplant, cancer, death - but as a result I think they had just

become words. Words without the inconvenience of the emotions and

intellect that typically surround these things. The slap of reality I

experienced the other day didn't leave me more fearful of death or

dying, it was more just a sadness at the thought of this all coming to

an end and leaving my family with no choice but to watch me suffer and

die. I really hate that thought!

As depressing as all of this sounds, I am maintaining pretty well, and

I'll be fine in no time. Seriously, this is how I have always

worked...I get good news, or come to some realization and I get a

little withdrawn while I sort it all out - it usually takes me about 3

days. Then, I go, okay I've got it, now do what you need to do to work

with it or around (whichever is possible) and I move on. Today is day

number 3, so I should be better in no time. :-)

I just realized how lengthy this is getting so I'm going to continue

on a personal email.

Sorry group, my fingers got a little carried away!

1

[Guest guest]

Oh 1, I hear you...I saw Bobby go through all the fevers,

chills, throwing up, not being able to go anywhere, and it is the

PITS...and especially knowing that " you have to get sicker. " AND with

all that has gone on with our group the past two weeks...I've just been

worried about you with Mel 2 and the news of your donor...we are all

behind you, just hang in there!!!!

Bobby & Anne

[Guest guest]

Hang in there ,

Your posts are sounding a lot like Deb's used to be and she just got

her liver.

Just keep being the squeaky wheel at your center so that they get you

on that transplant list!

I know you were looking into multi-listing, don't give up.

We are all here for you and we will be patient, you will get on that

list.

Lee

>

> The problem is I have been sick more than well lately, and it

> appears

> more and more that we can no longer put band aids on my condition --

> that these are just symptoms to be contended with as a result of the

> cirrhosis. Stenting and antibiotics don't seem to help. When you

> combine this ongoing yuky feeling with the loss of ,

> elimination

> of potential donor and a few other personal glitches well...it doesn't

> leave one feeling good all over.

>

>

>

> Sorry group, my fingers got a little carried away!

>

> 1

>

>

>

>

[Guest guest]

Deb

I hear you. Don't forget though, this disease is one of years if not decades. In this sort of time frame, some true breakthroughs can and will happen.

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...

[Guest guest]

JD,

This is what I'm counting on! I assured 2 that we would never

stop striving for a cure!

1

------

In this sort of time frame, some true breakthroughs can and will

happen.

jd

[Guest guest]

Dang straight! Ideas are funny little things, they don't work unless we do!

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...