Re: One of 11 new members....

[Guest guest]

Hi Twila and and welcome to the group!  I'm always so happy to meet the

newbies, but so sad that someone has to be so sick in order for us to meet. 

Just wanted to say hello.   This is a great group of people who understand what

you're going through and who genuinely care.  Will be praying for you and

. 

Hugs...........

Diane C. from TN

________________________________

To: livercirrhosissupport

Sent: Friday, November 21, 2008 7:24:36 AM

Subject: One of 11 new members....

Hi! I'm one of your 11 newbies. I think I glad I found this group!

My name is Twila and my husband, , is the unfortunate one to

have cihrrosis. Funny, I always had trouble spelling c-i-h-r-r-o- s-i-

s until it became personal.

Shortened version of our experience so far. was diagnosed with

secondary polycythemia almost 3 years ago. That took 2 different

doctors to find. The first one simply blamed his smoking for his

symptoms. Fired his butt and moved on.

The second doctor, same clinic, finally found the polycythemia after

months of our insistance that something other than his smoking was to

blame for his exhaustion and ill feeling. He was getting so sick, he

couldn't work.

What we found was there is no treatment for secondary polycythemia

other than blood letting. Drop a pint of blood every 4-6 weeks and

you 'should' feel better. Tried it once, it worked for a week or

two. Then he felt crappy again. Tried it one more time and he spent

the next 5 days in bed because he was so sick.

Back to the doctor and again, this second doctor also said, " Well you

just need to quit smoking. " Oops! Wrong thing to say. Fired his

butt too!

We both know that smoking isn't good for us, but smoking alone

couldn't possibly be the only reason that was feeling sooo

sickly all the time. So, we found another doctor, again same

clinic. This doctor was an acquaintence and a client of ours. We do

computer repairs, custom builds etc. Anyway, when first saw

him, we told him that there had to be something else that was causing

him to feel so poorly all the time. And he actually listened!

He did more blood tests, didn't like what he saw in the liver tests,

then ordered a biopsy. VOILA! Two years ago, this past September,

we got the diagnosis of cihrrosis. In 's case, non-alcoholic

cihrrosis. He hasn't had an alcoholic drink in over 16 years. And

even then, he was just a social drinker.

By August of '06, he couldn't work anymore. Seems he was and is

having a lot of trouble with focus, concentration and memory. Oh and

his temper is much shorter than ever. He's always been a gentle

person, but now it doesn't take much to set him off.

So, by September '06, we knew he had secondary polycythemia and non-

alcoholic cihrrosis. Now we're getting somewhere. Since Dr. K was

unfamiliar with cihrrosis, he sent him to a Liver Specialist for

confirmation. Yep, that's it. Ok, well at least now we know the

story.

Well, part of it anyway. Sometime after his cihrrosis diagnosis, Dr

K also checked him for diabetes. Yep, sure enough, he's also type 2

diabetes now. Apparently that follows hand in hand with cihrrosis?

At least there's some things we can do for the diabetes. Can't do

anything helpful for the rest of his illnesses. Makes us both feel

pretty helpless at times.

We just have questions like...what came first? The cihrrosis or the

polycythemia? Did the poly cause the cihrrosis or vice versa? Oh

for those that don't know...polycythemia is 'too many red blood

cells'. We knew 20 years ago that had 'thick blood'. We used

to sell plasma to make extra money and it always took him 15-30

minutes longer to give a pint of plasma because the techs said his

blood was too thick. This implies that he had polycythemia way back

then.

Anyway, I'm rambling and it's time for me to get ready for work.

Just wanted to introduce my self and give everyone a snapshot of what

we're going through. Both cihrrosis and poly cause extreme

exhaustion. Tie that together with the cihrrosis symptoms and you

get one 'crabby patty' to live with! LOL

Now he's also dealing with the diabetes, but not very well. He's

never been one to follow doctor's orders very well. But, I'm sure

you all get the picture. I'm so glad I have a job, not only for the

financial benefits, but to get me out of the house on a daily basis.

Although, starting next week, my hours have been cut from 40 to 20,

at least it gets me out of the house and away from Mr Crabby Pants

for a few hours! Helps to keep us married! LOL

Ok, that's it. I gotta' git ready for work. Hope everyone has a

great day! Will check in often I'm sure. I've already learned a few

things from this group, that help explain some issues we've seen.

Bye now.