Re: Mis understanding

[Guest guest]

HI abijann

No it doesn't matter but it was just confusing as I had always thought both you

and your husband had cirrhosis and I felt a double blow for the both of you.

I went and had a look and worked out why I thought that..

In many of your posts you refer to " we " so that must have been where I just

interpreted that as both of you.. Il show you what I mean by some quotes from

your posts.

" We signed an advanced directive right in the hospital room

when we were in liver failure. It was fortunate that our

encephalopathy wasn't that bad even though we were close to

having a transplant "

" Others here have gone through things that we have not. They have

other conditions and diseases with their cirrhosis also "

" Our own cirrhosis, they think, was caused by genetics where the bile ducts had

not formed appropriately

or else got damaged by infection. They were twisted and narrowed...

this is known as Schlerosing Cholangitis. However, they are not

sure why our cirrhosis occurred cause we never smoked, used

street drugs, and don't drink alcohol. "

" That is the drug we were on before the liver transplant. "

We had a transplant. If there is any questions you might have,

I may be able to answer them for you or point you in the right

direction.

When we got on the transplant list, we were having blood work done

every week. "

That's all, it was just confusing and I felt for you that you had been given a

double whammy so to speak.

Trudi

Mis understanding

I don't know why you thought that from what I posted. I never

stated that we both had a transplant, I do know that. I have spoke

about helping to take care of him while he was in the hospital...

I spoke about sleeping beside him on a cot. I spoke about taking

care of him when he was home after all the operations. I spoke

about how hard it was for me to accept losing him and how

difficult it was to accept him signing the form before the

surgery. I spoke about having to take him to the transplant

hospital directly from the doctor office and not being able

to return home for clothes or anything else since that doctor office

was about 1 and a half hours away from where we lived and being with

him through his entire evaluation in the hospital during those 21

days. I spoke about him being there for me when I was hospitalized and

he, being as sick as he was, did that for me.

There was so much I spoke about concerning us....but our main purpose

for being on here was to help others with this disease and to give

them the information they would need and tell them what we needed to

know, but didn't, so they would be able to have the knowledge we

wished that we had had since he developed liver failure within one

week and there were no signs of the disease before that. We didn't

have the option nor the time to prepare ourselves for the blow. I

helped others on here who asked questions about how to see about

getting a transplant and about how I learned about the tests he was

having and what they meant and why we needed to know that.

I also spoke about what doctors they should see and what the

Transplant surgeons had told us about people waiting too long

to be placed on the list and about what health they should try

to be in when they reached the top of the list. I spoke about the

many complications that developed afterwards. I gave links to

information. We have been on this group site for years now. After

he was evaluated for his transplant, was when we started here when it

was just put on the web as a group. welcomed us. When I

became very sick, we left for awhile and welcomed us back to

the group after that (that is why it has a different date on there

now..in the member listing.. from the date we truly started)...I did

not think I was coming back at that time because of my health. I lost

a dear friend on here who had done everything to have a transplant

possible and she had to fight to even try and receive one. She had a

transplant and because the " team " did not take care of her properly,

she died.

I wished I could of been with her but I was taking care of

someone who was extremely ill at that time and running up and

down the highway since the transplant hospital is about 3 to

4 hours away about once or twice a week, many times in an

emergency situation where the hospital would call and said they

wanted him down there right now. His hospital stays, of which I was

right with him, lasted two weeks to four weeks at a time.

When he was first transplanted he was in the hospital a total

of 5 months non stop. We both were at the hospital

more than we were home during that first 1 and 1/2 to 2 years.

Like I said, I never left his side.

So, this was a mis understanding...but I don't understand why

it really matters. I'm glad we have taken the time to straighten

it out.

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