Re: Laurie Almost on the List & Emotions Concerning

[Guest guest]

Laurie,

I read you recent posting and just wanted you to know that you'll be in my

prayers tonight.

Hang in there. You are not alone in this thing.

God Bless!

[Guest guest]

Peg--

Thank you so much for your heartfelt response. I really appreciate it. When

I had the liver eval 3/99 we were both there. I guess I'm afraid that they

may have found something on the ultra sound - they mentioned a lymph node,

but said that is common w/PSC. But I'm wondering why they measured it when

they did the ultra sound. Of course, my mind is wandering to the worst.

Thanks again for your offer to call you . I just may do that.

You & Phil enjoy your dancing!

My prayers are w/you both

Laurie

[Guest guest]

Thank you, . My husband's name is , too - only w/ a " v " .

Take care and let me know any specific prayers you need.

Laurie

[Guest guest]

Laurie,

Feel free to just " let it out. " I remember when I was listed. I wasn't

expecting it at all, and then I was thrust into a myriad of tests before I could

emotionally process the whole thing. It does feel like mourning. I had hoped,

after so many years, that I could avoid the transplant. No such luck. This

group has helped so much because it is the one place where people know what I go

through.

Good luck through this process. Know you're not alone.

Candles are burning..

in NH

Oceandrmer@... wrote:

> Well, group, I just completed another visit to the liver tx center in Omaha &

> saw a new dr. This dr is the head of the transplant unit. The other dr I

> had seen there is leaving (no disappointment there) . Anyway, they did an

> ultra sound which showed deterioration as before and in addition that the

> left lobe of my liver is so enlarged it is sitting on top of my enlarged

> spleen, which are both in turn squishing my stomach, which is why I'm having

> trouble eating - no room at the inn.

>

> ANYWAY, my bilirubin and bilirubin direct are up since Oct. and my Albumin

> (which I didn't know was that big a deal) is low and beginning to affect my

> overall health. Due to the many cholangitis spells I've had lately, they

> want to do another ERCP (it's been 2 yrs) and do brushings. Also, since I'm

> having so much problem w /distention and it can't all be due to ascites, they

> are going to do an endoscopy to check on the duodenal erosions which were

> diagnosed 11/98. The dr. in Omaha was surprised that they were left there

> when they were discovered (did he think surgery was needed? - I hope not).

> due to the cholangitis spells in spite of my being on constant antibiotics

> for pouchitis, I have to be there ahead of time so they can start IV

> antibiotics before the procedures. They'll do one right after the other. I

> have to stay overnight to make sure no complications. Also, I then see the

> dr. the next day.

>

> Steve (my husband) doesn't know this yet--but the dr. wants to see him. He

> was unable to go w/me Tuesday, so our son went with me and drove me home. Dr

> thinks it's time to go on the list and he wants to discuss this with Steve

> and me together. His associate said they could have done the ERCP that

> afternoon while I was there, but the main dr said he wanted to wait until

> Steve was there and I had IV antibiotics first. I hope they didn't see

> something in the ultra sound they aren't telling me about.

>

> You know, we all know it will come to this one day, but I feel like I'm in

> mourning. I want so badly to cry and " let it out, " but it won't come. I had

> to keep up a good front for Steve because he left for San Diego for a golf

> trip with his boss and I didn't want to spoil that. He'll be back Sunday

> night & I'll tell him Mon. after work.

>

> thanks, everyone for putting up with this lengthy msg. I guess I wanted

> someone to " talk " to. I'm home alone now and probably for the majority of

> the weekend as our 18 yr old works evenings and our 21 yr old just moved out.

> Empty nest not adjusted to yet, especially now when I really need them.

>

> Hope I didn't bring anyone " down. " That is always a concern of mine and why

> I don't write when I am.

>

> Take care. My thoughts & prayers are with you all.

> Laurie

>

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[Guest guest]

Laurie,

I think it was with an ultrasound that they thought the Phil had a blood clot

and it turned

out to be nothing so we'll pray that you'll have the same outcome. It can be

sooooo scarry

though. I'm going to try to call Jacquelyn in a few minutes, I'll let you know

what

happens. I'd love to get a call from you. Jacquelyn and I enjoy our

conversations.

Peg

Oceandrmer@... wrote:

> Peg--

> Thank you so much for your heartfelt response. I really appreciate it. When

> I had the liver eval 3/99 we were both there. I guess I'm afraid that they

> may have found something on the ultra sound - they mentioned a lymph node,

> but said that is common w/PSC. But I'm wondering why they measured it when

> they did the ultra sound. Of course, my mind is wandering to the worst.

>

> Thanks again for your offer to call you . I just may do that.

>

> You & Phil enjoy your dancing!

> My prayers are w/you both

> Laurie

>

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[Guest guest]

Laurie,

My prayers are with you and I'm lighting my French Vanilla Yankee candle for

you tonight. Can you smell it? Having PSC is an emotional rollercoaster!!!

Hang in there, once you get up this hill you get to glide down for a while.

Michele

[Guest guest]

Laurie,

I'm so sorry you're feeling so bad. I underwent my transplant eval

recently & I agree that it's a very surreal experience when you

suddenly realize that this is becoming more of a reality. Try to make

good use of the social workers on the team whose job it is to help you

deal with the myriad emotional issues that go along with being listed.

Unless you've been listed as Cat 2a or 1, you do have some time to

think this over. I know it complicates the situation many times over,

but have you talked to your team about the possibility of a living

donor transplant if this is an available option to you? If you're

getting sick enough to warrant consideration for a transplant, this is

probably the best and quickest way to get a liver and is becoming more

of a viable option for patients with generous donor candidates at

centers that perform these procedures.

Re your ultrasound. Don't worry about the lymph nodes. Just about

everybody with liver disease of any sort has them. And we PSC patients

have the most potentially abnormal appearing livers due to the size and

location of the non-cancerous regenerative nodules that come with time.

As my kids and Charlotte say... CHIN UP!

Keeping you in my prayers,

Caseyspa

[Guest guest]

Michele--

I get sick on roller coasters! LOL Yes, I do believe I smell your candle.

Thank you and take care.

Lalurie