Re: Updated Bio/JoAnne

[Guest guest]

U do realize U are a walking miracle dont you?? I know I dont have

AIH or any chronic disease like so many of you do, but I have

benefited so much hearing about all your triumphs. U are so amazing!

Trish

> My earlier bio. is in the PBC links. Now, to update it... At

the time of

> my transplant I had developed end stage liver disease secondary to

PBC.

> worsening lower body edema ( I was actually " leaking " fluids from

my legs),

> jaundice ( I was a lovely shade of orangey brown), and had ascites,

my last

> ultrasound showed a mass on my left lobe of my liver and of course

a nasty

> portal vein. Other symptoms were portal hypertension, esophageal

varices,

> had a blead in 1995, also had Asthma, Sjogren's syndrome, and

increased

> lipids. I had stopped smoking about 15 or so years ago, no

alcohol at all

> since 1982, when I was diagnosed with PBC. I went to the hospital

(Lahey)

> on Dec. 5, 2003 and underwent my transplant. I have no memory of

any of

> this. Jeff tells me that when the hospital called him at work he

called me

> at home to tell me to get dressed that we were going and my

response was " I

> don't feel good enough to go anywhere " . HA Poor man came home

and I was

> sound asleep on the sofa! He then dressed me bundled me up and put

me in

> the truck..and off we went. made it there in 3 1/2 hours. I had

post

> operative complications, by, right sided pneumothorax, which

occurred when I

> was sent downstairs to another department to have a draining of

fluid around

> lung ...hence during procedure I developed the pneumothorax.So,

then I had

> to have a second emergency chest tube inserted as my lung collapsed.

( they

> notified my docs who came rushing down and inserted the chest tube

> themselves). Needleas to say my husband hates that department

downstairs! I

> was also then re-intubated and put into a coma for a week so as not

to move

> so the tear in my lung could heal. And, was once again in SICU,

then after

> a week back to ICU then finally back to my room again. Then I had

mental

> change as a result of a bad reaction to Prograf..so I was quickly

taken off

> that and put on Neural. But, it took almost a month before I knew

what was

> going on. To be safe I had a head CT and a MRI to be sure brain

itself

> wasn't damaged. Whew !! BUT, thru all this my liver functions

improved day

> by day. I also was found to have a very rare lung fungal infection

called,

> Dactylaria constricta. As of this last week the CT scan showed for

the

> second month in a row my lungs to be clear. Now, they are awaiting

to

> confer with NIH as this being so rare they are not sure when it is

safe to

> stop my medicine for it. They want to stop ASAP as it can increase

my liver

> enzymes. At this time my lab numbers are all good and NORMAL..what

a

> wonderful word after so very many years of being ill. After 27

days I was

> released to an acute care recovery hospital. I stayed there for

two weeks,

> learning how to walk, write, etc.... I had no appetite and thus

had a very

> hard time eating.I had been on a feeding tube for about 5 weeks to

> supplement the little I could get down.I drank a LOT of Ensure and

Boost,

> but I HAD to eat. I started very small and slowly worked up to

being able

> to taste the food and eat. Now.I love eating and am into cooking.

watch

> the Food Network to learn new recipes. My husband is of course

enjoying not

> only the food, (and his not having to be the chief cook and bottle

watcher

> anymore), but we can go out and do things and have fun. We will be

leaving

> for our anniversary / vacation this coming week...off to the Cape

for a bit

> over a week. I love the ocean. We will start in Hyannis, then off

to N.

> Truro, next to P. Town. I have a entire set of new clothes as I am

once

> again back to size 6 after reaching a size 18 what with the fluid

etc., and

> have a new hair style. Actually, didn't have any style at end at

all

> before..It was lucky I combed it daily..except I think my husband

said he

> combed it, bathed me and dressed me and basically everything at the

end.

> I have been honored to meet a Dr. Darling, thru Joan Dale.

He was

> speaking at a Conference in Canada. At the end they were talking

and as he

> is from VT. she told him about me. So, he gave Joan and then me a

copy of

> his book Coma Life. The e-mails flew back and forth as did

his

> calls periodically. He was of great support to both myself and to

my

> husband. His was the first (Joan's the second) phone call I

received. He

> had been at a Conference and at break heard the docs talking about

me and my

> case..when he heard the patient was " a rock collector from

Vermont " , he

> knew it had to be me. ; - ) and he rushed to a phone. We will be

meeting

> in person next month for lunch. So excited! I have to say coming

home was

> wonderful..I was so happy I started to cry when we got near the

house and

> when we pulled in there in the drive was my next-door neighbor and

friend

> Cinda, waiting with a big hug. She and my husband had arranged

it! Triple

> joy! Anyway, you may say..oh gosh, she's been thru so much!

And, yes I

> did, BUT..I would do it again in a heart beat!!!!!!! To be able

to enjoy

> the world around me and to once again be a partner to my husband

instead of

> just receiving is so good. God has been good to me...he also gave

me some

> wonderful friends. Special thanks go to my husband, the love of my

life!!

> Bobbie D., Linie, and Dr. Darling...all you for your needed

prayers, the

> many wonderful cards for so many of you. I enjoyed them when I

again knew

> what was going on, and of course the wonderful nurses who cared for

me..even

> when it was so difficult. and my docs who came to see me each and

every

> day.. My husband lived in the hospital the entire time I was

there. In the

> beginning he bought a sleeping bag and slept in the truck whenever

they

> kicked him out, then the hospital caved in and gave the poor man a

bed in my

> room. I was in a private room as I was so sick they didn't want

anyone else

> near me with possible germs..so room for hubby. (I was only billed

semi

> private). As to cost, insurance paid for the entire transplant,

room, meds

> tests, Now they pay for most of my monthly meds, most of tests and

> sometimes all, what they don't cover Medicare usually covers..so we

still

> have medical bills ongoing but not as bad as you would think. I

wear a sun

> hat, and use sunscreen faithfully, have a beach umbrella for beach,

love to

> garden (wear gloves) and walk about, read again, talk daily with my

best

> friend, ha ha ha, and am able again to clean house and all that

> jazz.....wonderful!!!!! Yes, I still have days when I get tired

easy and

> I now have fibromyalsia which I take Ultracet and Flexeril

for...Anyone with

> questions on fibro ask me!! I have learned a lot! I have a great

rheumy

> that specializes in fibro at Lahey. So, in a nutshell that has

been my

> past 7 months. Joanne C. (Owner LiverSupport_L)

[Guest guest]

Hi JoAnne,

My dad has a fungal infection and they are trying to figure out what

it is - some of them are regional. I was just wondering where you

are from (state/region). The docs are trying to figure out if he

caught this while in the midwest - while we live in NJ. Just

wondering if maybe this is the same thing...we're desperate to find

out what he has (needs to know before they will transplant)?

Thanks for any help,

> > My earlier bio. is in the PBC links. Now, to update it... At

> the time of

> > my transplant I had developed end stage liver disease secondary

to

> PBC.

> > worsening lower body edema ( I was actually " leaking " fluids

from

> my legs),

> > jaundice ( I was a lovely shade of orangey brown), and had

ascites,

> my last

> > ultrasound showed a mass on my left lobe of my liver and of

course

> a nasty

> > portal vein. Other symptoms were portal hypertension, esophageal

> varices,

> > had a blead in 1995, also had Asthma, Sjogren's syndrome, and

> increased

> > lipids. I had stopped smoking about 15 or so years ago, no

> alcohol at all

> > since 1982, when I was diagnosed with PBC. I went to the

hospital

> (Lahey)

> > on Dec. 5, 2003 and underwent my transplant. I have no memory

of

> any of

> > this. Jeff tells me that when the hospital called him at work

he

> called me

> > at home to tell me to get dressed that we were going and my

> response was " I

> > don't feel good enough to go anywhere " . HA Poor man came home

> and I was

> > sound asleep on the sofa! He then dressed me bundled me up and

put

> me in

> > the truck..and off we went. made it there in 3 1/2 hours. I

had

> post

> > operative complications, by, right sided pneumothorax, which

> occurred when I

> > was sent downstairs to another department to have a draining of

> fluid around

> > lung ...hence during procedure I developed the pneumothorax.So,

> then I had

> > to have a second emergency chest tube inserted as my lung

collapsed.

> ( they

> > notified my docs who came rushing down and inserted the chest

tube

> > themselves). Needleas to say my husband hates that department

> downstairs! I

> > was also then re-intubated and put into a coma for a week so as

not

> to move

> > so the tear in my lung could heal. And, was once again in SICU,

> then after

> > a week back to ICU then finally back to my room again. Then I

had

> mental

> > change as a result of a bad reaction to Prograf..so I was

quickly

> taken off

> > that and put on Neural. But, it took almost a month before I

knew

> what was

> > going on. To be safe I had a head CT and a MRI to be sure brain

> itself

> > wasn't damaged. Whew !! BUT, thru all this my liver functions

> improved day

> > by day. I also was found to have a very rare lung fungal

infection

> called,

> > Dactylaria constricta. As of this last week the CT scan showed

for

> the

> > second month in a row my lungs to be clear. Now, they are

awaiting

> to

> > confer with NIH as this being so rare they are not sure when it

is

> safe to

> > stop my medicine for it. They want to stop ASAP as it can

increase

> my liver

> > enzymes. At this time my lab numbers are all good and

NORMAL..what

> a

> > wonderful word after so very many years of being ill. After 27

> days I was

> > released to an acute care recovery hospital. I stayed there for

> two weeks,

> > learning how to walk, write, etc.... I had no appetite and thus

> had a very

> > hard time eating.I had been on a feeding tube for about 5 weeks

to

> > supplement the little I could get down.I drank a LOT of Ensure

and

> Boost,

> > but I HAD to eat. I started very small and slowly worked up to

> being able

> > to taste the food and eat. Now.I love eating and am into

cooking.

> watch

> > the Food Network to learn new recipes. My husband is of course

> enjoying not

> > only the food, (and his not having to be the chief cook and

bottle

> watcher

> > anymore), but we can go out and do things and have fun. We will

be

> leaving

> > for our anniversary / vacation this coming week...off to the

Cape

> for a bit

> > over a week. I love the ocean. We will start in Hyannis, then

off

> to N.

> > Truro, next to P. Town. I have a entire set of new clothes as I

am

> once

> > again back to size 6 after reaching a size 18 what with the

fluid

> etc., and

> > have a new hair style. Actually, didn't have any style at end

at

> all

> > before..It was lucky I combed it daily..except I think my

husband

> said he

> > combed it, bathed me and dressed me and basically everything at

the

> end.

> > I have been honored to meet a Dr. Darling, thru Joan

Dale.

> He was

> > speaking at a Conference in Canada. At the end they were

talking

> and as he

> > is from VT. she told him about me. So, he gave Joan and then me

a

> copy of

> > his book Coma Life. The e-mails flew back and forth as

did

> his

> > calls periodically. He was of great support to both myself and

to

> my

> > husband. His was the first (Joan's the second) phone call I

> received. He

> > had been at a Conference and at break heard the docs talking

about

> me and my

> > case..when he heard the patient was " a rock collector from

> Vermont " , he

> > knew it had to be me. ; - ) and he rushed to a phone. We will

be

> meeting

> > in person next month for lunch. So excited! I have to say

coming

> home was

> > wonderful..I was so happy I started to cry when we got near the

> house and

> > when we pulled in there in the drive was my next-door neighbor

and

> friend

> > Cinda, waiting with a big hug. She and my husband had arranged

> it! Triple

> > joy! Anyway, you may say..oh gosh, she's been thru so much!

> And, yes I

> > did, BUT..I would do it again in a heart beat!!!!!!! To be

able

> to enjoy

> > the world around me and to once again be a partner to my husband

> instead of

> > just receiving is so good. God has been good to me...he also

gave

> me some

> > wonderful friends. Special thanks go to my husband, the love of

my

> life!!

> > Bobbie D., Linie, and Dr. Darling...all you for your needed

> prayers, the

> > many wonderful cards for so many of you. I enjoyed them when I

> again knew

> > what was going on, and of course the wonderful nurses who cared

for

> me..even

> > when it was so difficult. and my docs who came to see me each

and

> every

> > day.. My husband lived in the hospital the entire time I was

> there. In the

> > beginning he bought a sleeping bag and slept in the truck

whenever

> they

> > kicked him out, then the hospital caved in and gave the poor man

a

> bed in my

> > room. I was in a private room as I was so sick they didn't want

> anyone else

> > near me with possible germs..so room for hubby. (I was only

billed

> semi

> > private). As to cost, insurance paid for the entire transplant,

> room, meds

> > tests, Now they pay for most of my monthly meds, most of tests

and

> > sometimes all, what they don't cover Medicare usually covers..so

we

> still

> > have medical bills ongoing but not as bad as you would think.

I

> wear a sun

> > hat, and use sunscreen faithfully, have a beach umbrella for

beach,

> love to

> > garden (wear gloves) and walk about, read again, talk daily with

my

> best

> > friend, ha ha ha, and am able again to clean house and all that

> > jazz.....wonderful!!!!! Yes, I still have days when I get

tired

> easy and

> > I now have fibromyalsia which I take Ultracet and Flexeril

> for...Anyone with

> > questions on fibro ask me!! I have learned a lot! I have a

great

> rheumy

> > that specializes in fibro at Lahey. So, in a nutshell that has

> been my

> > past 7 months. Joanne C. (Owner LiverSupport_L)

>

[Guest guest]

I had a rare infection and was under the care of the NIH protocol. No

idea how I got it. The lung problem was from pneumonia infection.which

is common after transplant. Fungul infections are normally from bird

droppings.........rotting leaves etc..........or You don't say if this

is his lungs.I am gathering it is. He needs to see a specialist. in

the Infectious Diseases. They are the ones who diagnose and treat

these sort of things. I am in the Northeast and go to Lahey Clinic

Hospital in Burlington Mass.they also have an excellant Infectious

Disease Department.they treated me. I suggest you make an

appointment there.they are very good. Joanne

>

> Hi JoAnne,

>

> My dad has a fungal infection and they are trying to figure out what

> it is - some of them are regional. I was just wondering where you

> are from (state/region). The docs are trying to figure out if he

> caught this while in the midwest - while we live in NJ. Just

> wondering if maybe this is the same thing...we're desperate to find

> out what he has (needs to know before they will transplant)?

>

> Thanks for any help,

>

>

[Guest guest]

RE:

In , " Jj Cathcart "

> <JJCATHCART@E...> wrote:

My earlier bio. is in the PBC links. Now, to update it... At the time of my

transplant I had developed end stage liver disease secondary

to PBC. worsening lower body edema ( I was actually " leaking " fluids from my

legs), jaundice ( I was a lovely shade of orangey brown), and had

ascites, my last ultrasound showed a mass on my left lobe of my liver and of

course a nasty portal vein. Joanne C. (Owner LiverSupport_L)

Joann C.

You are a brave lady and I am glad you are doing well. It was scary to even

read the things you went through. But you have given hope to many of us and

certainly created a model to look up to! Thanks for sharing.

Clara OR