Re: Laurie Almost on the List & Emotions Concerning

[Guest guest]

Laurie,

Don't ever worry about bringing anyone down when telling us what is going on

with

you. Please don't feel you have to hold back. This what this group is all

about. I've been through the empty nest thing and it's nothing to joke about it

can be a real bummer. I feel so bad that you we're able to discuss this with

your husband and that he isn't going to be with you this weekend. If you ever

want to just talk you can always call me. .

I wouldn't be afraid of them wanting to have Steve there when you talk about

transplant. I've gone with Phil to all his liver doc appointments and anything

that pertained to transplant. One of the reasons (other than I'm afraid he'll

forget to tell me something) is that I can often think of more questions to ask

and sometimes can just think more clearly to ask and remember. Sometimes when

you are the one involved it's hard to focus on everything that needs to be

asked.

I really think they are right in getting you listed. You don't want to let

things get so bad that you won't be a good recipient or it will be too late. I

know when it finally came down to the interview with the tx team it suddenly

became much more of a reality.

Having antibiotics before the ERCP is a good idea. When Phil had his ERCP they

put him on 3 days of IV antibiotics beforehand and he still got infected. (I

think he was probably infected some beforehand). The doctor explained that

sometimes infection gets into little pockets in the bile ducts and when they go

in it lets it out or something like that. I'll be praying for you. By the way

they make a decision on Phil tomorrow so say a little prayer for us.

And please call me if you'd like. We'll be out dancing tomorrow night and a

party Sat night but should be home Saturday during the day and Sunday afternoon

and evening and at least talk to us in the group. That's what we're here for.

Jacquelyn always asks about you. Hopefully I'll talk with her tomorrow.

Love,

Peg

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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