Re: debster

[Guest guest]

Hi Abijann!

Jeanne is concerned for you too. I pray all goes well with your hospital visit.

Please let me know if you get home before I leave for the airport on the 28th at

2:00. I know Jeanne would want to know.

Jeanne, being her true trying-to-be-wonder-woman self, is somewhat discouraged

because she is not out doing the Hustle on the dance floor right now, but when

you consider she was literally within hours of loosing her battle to live, she

has to place this in perspective. For two weeks post-op, she is doing

exceptionally well. The ascites drainage from the apex of the surgical scar is

bothering her but I told her it had to go somewhere!!! It will diminish as the

scar line heals and I know that when I get there, she will be well on the road

to recovery. I plan on being in there with her when she has the staples removed

and when she has her last liver biopsy before she goes home. I just hope we can

leave before Labor Day so we can travel to her home and I can help her get

settled in before I have to fly out of there on the 7th. I am booked to travel

out of ville, but I will gladly change the flight and pay extra to go out

of Tampa. I will probably be able to leave later and get home earlier!

I will be down there next Saturday to spend the following 8 days with her, so I

know I can get her to deal with whatever they throw at her. The post-op testing

protocol is necessary and I am thankful they are being cautious. She is

definitely NOT fond of the procedures but they are a small price to pay to live

in relative good health.

She is way too hard on herself! First she called herself Beatlejuice...then the

Crypt Keeper, now it is Orca...she needs to stop and realize that in 4 months

she will not look like any of those things and will actually start looking like

herself again!!!

So you take care of you! I will let Jeanne know I heard from you and again, I

hope all goes well for your hospital visit. I am off to book my rental car now

and check on flights out of Tampa just in case she does get to leave the weekend

of Labor Day.

Deb

Deb and the Four FluffButts

http://www.debsmaltese.com

debster

Thank you for such good news. When I heard that

I jumped for joy. It is amazing she got a liver so fast!

Please tell her I wish her the very best and will keep her

in my prayers. I hope everything will be fine in her life

now. I'm so releaved as I was worried about why we did not

hear from her. She is such a sweet person.

Please keep us posted on her progress. Thanks so much. Abijann

[Guest guest]

All very pertinent points you raise here. I know they had that organ

out of the donor for too long before they got it in Jeanne (12 hours

is a long time when it is LOCAL!). The Alkaline Phosphatase was sky

high immediately post transplant and three weeks there after as well

and never went down below 700. This one test alone points to a bile

duct issue. They simply missed it when they did her first stent (in

one of the main bile ducts). Now, maybe it is just me, but I think

it would have been prudent to check the others at that time as well,

seeing as there was already one blockage...but hey, what do I know?

I am not a doctor, just have worked in health care for the past 34

years.

I tell you, you really need to be an educated consumer of health care

services these days or have someone who can help you and speak up for

you when needed. The level of poor care I have witnessed over the

past 10 years or so is frightening! I think this is thanks in part

to Medicare payment cut backs and managed care. But my home state of

PA (I work for the University of Pittsburgh Medical Center) and some

of the surrounding states pale in comparison to the level of non-care

I have witenssed Jeanne be subjected to in Florida...so much so that

I forbade my father from moving there!

I will be speaking to Jeanne tomorrow and I will let her know she has

your prayers as well as those of others on the list. She is in for a

rough week ahead and she does not deal well with pain so she can use

all the prayers she can get and then some!

I will let you know how things go next week.

Thanks to all,

Deb

>

> Thank you for keeping me informed on how Jeanne is

> doing. Please tell her that I'm praying for her and

> others are also.

>

> I am quite concerned about them not finding this blockage right

> away and checking her for bacteria before this when she

> first told them how she felt. It surprises me that this wasn't

> their protocol for all their transplant patients.

> They should check her for liver or biliary abscesses that may have

> developed because of this.

>

> There are a number of very strong anti-biotics that they can use

> by themselves or in combinations to help rid her of bacteria.

> Some can be taken care of with penicillin or Erythromycin, others

> need stronger ones such as Vancomycin, Merepenem, Cefeprim, Zosyn,

> etc. I hope that hospital has an " Infectious " team of doctors that

> can evaluate how to handle her problem in this area. Some

> anti-biotics can be very hard on the kidneys, so careful

observations

> and levels should be taken on her to prevent more kidney damage.

>

> Thanks for being there for her...she sure has a good friend in you.

[Guest guest]

Can anyone tell me why a doctor would not accept a living donation from a family

member when the patient will die soon? Why do they insist sometimes for a

cadaver not a living donor? Is half not better than none??????????

Jo Lynn

Please register to be an organ donor, I have.

The life " you or I " save may be " someone you love " .

L. Corder

November 2, 1972 - October 24, 2004

www.michaelneedsaliver.com

www.linksforlifecampaign.com for information on how " you " can help to save a

life.

[Guest guest]

Kathleen,

Thank you for sharing your story. (my brother), had cirrhosis only.

Any thoughts???

The attachment is the end of 's life at 31 years old.

Jo Lynn

Please register to be an organ donor, I have.

The life " you or I " save may be " someone you love " .

L. Corder

November 2, 1972 - October 24, 2004

www.michaelneedsaliver.com

www.linksforlifecampaign.com for information on how " you " can help to save a

life.

[Guest guest]

Kathleen,

Thank you again for your compassion. And yes, I did ask but they just said he

had to have a whole one due to his condition. My question is would a working

organ (half) not be better than the one he had. Especially had it come from a

father or sister as our family...

This bureaucracy in this is never ending...

P.S. I am truly glad for you and your husband, hugs to you!

Jo Lynn

If you would like to e-mai me directly- jolynn.smith@...

Please register to be an organ donor, I have.

The life " you or I " save may be " someone you love " .

L. Corder

November 2, 1972 - October 24, 2004

www.michaelneedsaliver.com

www.linksforlifecampaign.com for information on how " you " can help to save a

life.

[Guest guest]

Was just coming on to give you an update. They went in thru the rib cage to

access the one bile duct that was severely narrowed on Wednesday. Luckily, the

entire duct was not closed off and they could rech it the way they went in.

This time they left a t-tube in her that has to be irrigated every evening.

They sent her home rather uncerimoniously on Thursday afternoon. Good news is,

the repeat biopsy showed no signs of rejection. Bad news is, she is weak from

not getting out of bed. I am nagging her to eat and keep herself hydrated.

Thus far, she has not been throwing up, so that is a good thing. But I

seriously think she needs to have a physical therapist come in there at least

three times a week to make her work with those muscles and use those legs so she

gains her strength back.

Now they told her a few things I am confused by...like she would have to go up

there every two weeks to have that same procedure done? Why would they make a

blanket statement like that? Especially if the Alkaline Phosphatase is coming

waaaay down for the first time since she got that liver. I have to tell you, as

a health care professional, the Mayo Clinic in ville leaves a lot to be

desired emotionally if not medically! These people actually have statements

spew out of their mouths that I can tell you from first hand experience, no

professional physician or nurse would ever verbalize to one another...least of

all to the patient! The first guy had her in chronic rejection...without

benefit of a biopsy (he was wrong), this other guy had them removing half of her

transplanted liver if they could not reach the duct they had to open up (he,

also, was wrong), now we have another physician telling her she is going to have

to go up there every two weeks for this same procedure. I have no idea why they

would say this but this would not be the first time they have said some bizzare

thing or another to her.

All I can do is tell her not to try and cross bridges that she may never come to

and to deal with things as they come up. (I would usually say it with a lot

more clarity than I have available to me of late. I fell victim to the flu and

my voice is gone. I can only talk for short periods of time before it gets my

throat irritated and then the coughing starts again.)

So as of today, you are now up to date! I told Jeanne to ask you about that

t-tube. So hopefully, as her strength builds, she will get on the computer and

interact with folks, so be ready for some questions!

Stay warm today everyone! It is brutally cold here in Pittsburgh (also known as

Iceburg) today. My Chicken Soup awaits!

Debster

If you hear more about Jeanne, please let me know.

I'm concerned to know that she is alright.

Abijann

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[Guest guest]

Jeanne actually went back in as an outpatient Tuesday morning to make sure the

tube was still in place. The radiologist was very helpful to her and told her

everything looked just fine.

I told her your suggestion to talk to the head only and forget those residents.

She is going to try to stick with that! I also told her if her transplant

coordinator was not meeting her needs, it was her RIGHT to demand a new one AND

if she was ever concerned about anything, it was her right to speak with a

physician any time.

As for me...the only thing I have left over is laryngitis...not something that a

supervisor by day, teacher by night really is fond of having! But I will get it

back...some nice hot tea and lemon and rest. With this projected snow storm

coming tonight and tomorrow, I will just cuddle up with my dogs and a warm

bl;anket and sip some camomile tea and relax!

Debster

I hope you are feeling much better and that the flu symptoms have

gone away. I haven't heard from Jeanne yet, but I understand that

when you first come home from the hospital, it is hard to have the

strength to do much. I hope her family is giving her the greatest

support and that she will be able to stay home and not be admitted

anymore to the hospital.

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[Guest guest]

I am afraid I do not have very good news about Jeanne. She is in her local

hospital critical care unit fighting for her life. She started talking " out of

her head " on Sunday. She was asking me what room I was in thinking I was at her

house when I was over 1,000 miles away in Pittsburgh. The next morning I called

her transplant coordinator and left a message for her telling her there was

something critically and drastically wrong with Jeanne. I left her husband's

cell phone number to call so he could give her more of an update but I did

stress that she was bed ridden, unable to walk and was not cognizant and was

halucinating. She called Jeanne;s husband and told him she would speak with the

doctor. Well, no call on Tuesday from her. And when Joe got home, she was in

bed, totally unresponsive. He called an ambulance to transport her to Bayonet

Point Hospital and she has been in their ICU since. She has fluid in her lungs

and has a very bad case of a bacterial infection in her blood. The lung doctor

called Je this AM and told him her condition was grave and that f she did not

start fighting this infection, she would not make it. About two hours later, he

got a call from the hospital telling him she had taken a turn for the worse and

to get over there. He did see her and she was awake and alert and did respond t

him. He spoke to me around 5:00PM and said they were going to put her on a

different ventillator to get her oxygen level up. I just receove4d a call from

him about 10 minutes ago that she was deteriorating and they asked him if he

wanted them to do CPR if she arrested. He said yes...to do whatever they could

do to try to save her life.

I am not very optimistic given this latest turn of events and am quite upset

over this, soplease excuse any typos I amy make here as it is not easy to type

as one cries.

Jeanne is a very very dear friend of mine. I have walked with her hand in hand

through the last three years of this illness, through the transplant, through

the biliary obstruction, through the initial infection diagnosis (that she had

when she was in the hospital in ville by the way. I cannot believe they

sent her packing without first resolving that infection). I sit here angry

beyond comprehension that the ineptitude and negligence and malpractice of the

health care system in Florida has allowed her to come to this. I find it

incomprehensible that she has fought so hard and overcome so many obstacles and

hurdles for it to end like this.

Right now she is still breathing. And where there is life, there is hope. I

can only prayer ferverntly that God will allow her to recover and enjy her life

for at least a few years. She has been through so much (as most of you have

been also) to have ti all end like this.

I will let you know the outcome...good or bad. I am sorry I have had to say

this. I so wish it was a completely different post.

Any of you on this list who believe in God and the possibility of miracles,

please remember Jeanne and her husband Joe in your prayers tonight.

Debster

Have you heard any more about Jeanne? I hope she is doing much

better and that you are feeling 100% now.

I'm waiting for spring...everything seems so renewed when it comes.

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[Guest guest]

Our loved ones never truly leave us...they live on in the kindness

they showed, the love they gave, and the memories we have of them.

I truly love that verse...

Take Care,

~Kathy~

On Fri, 28 Jan 2005 04:18 , abijann <no_reply > sent:

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>Jeanne was a very special person...anyone who got to know her

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>would know how much of an inspiration she was.  She fought

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>so hard to stay alive.  Now she is at peace. 

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>You are such a good friend to her, she was very fortunate to

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>have someone like you with her during all this.  You might

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>say you were her friend, but I think Jeanne considered you

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>family.  I wish I could be there..we could wipe away each others

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>tears. 

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>There is something that comforted me when someone dies and it is

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>this verse:

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>Our loved ones never truly leave us...they live on in the kindness

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>they showed, the love they gave, and the memories we have of them.

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