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Bozena, So far I'm not doing anything for the cholesterol and it's starting

to bother me. At first the response that we would take care of it

post-transplant was OK but now it's been 4 months. I will have it checked

next time I do labs. I see my PCP first week in August.

OFF TOPIC: Bathroom is coming along. Really. Karl painted Monday, he did a

faux finish with bright yellow over a buttercup color. Tom (contractor) put

the toilet and vanity/sink in. Karl repainted the hall a sage (light green -

almost like lime sherbet). On my suggestion we changed the linen closet into

shelves for my husbands cookbook collection. We don't need a linen closet

there, I'll put it somewhere else. It's really nice, there were accordion

doors, we removed them and the space is open. Pictures are coming. Right now

the fixtures (toilet paper holder, towel rack, light) Then we need to decide

on a mirror. It is a small bathroom so there are not too many other

decisions. My Jacuzzi tub is awesome. I flushed it tonight with calgonite

and bleach. No bath yet, the water coming out of the faucet is lukewarm.

Need the plumber back to straighten that out! I want hot.

My best advice - be ready to be patient and keep your checkbook handy. I

cannot believe how everything adds up. We haven't seen the contractor's

final bill yet but we have paid $3,000. in labor and $2500 at Home Depot

thus far. I love Home Depot. I had no idea a little bathroom could be so

expensive!

Patty

RE: Anita

>

> Bozena, Bathroom renovations. All I can say is be patient. My sink and

> toilet are still in the garage, the contractor called today, the next

> step is for my husband who wants to be creative with faux finish to

> paint the bathroom. Right now the is obsessing about color, I just say

> yes dear, so Far he seems to be showing good taste, we'll see. Have

> fun. Patty

>

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  • 2 weeks later...
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Dear Patty,

I too was about to send out the calvary in search of you - I had hoped you were just taking a break and relaxing. I hope you are feeling better - maybe the tx team will be able to help with the puzzle. Take care and take it easy.....

Amy

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Amy, , , Harper, , Jan, Cheryl, Bozena and everyone

else!

Thanks everyone for your kindness, thoughtfulness, and support, I was just

kidding when I asked if you missed me, but it's nice to hear it anyway. We

rally do have a great group of pepople here and I appologigize in advance

for all the rest of you I didn't mention by name (always a danger using

names)except Jerry, you didn't say you missed me...)

Re: [ ] Patty

Patty, I for one noticed you were not writing in. I was worried!!! Glad

to hear you are back home. Take Care of yourself! -NH

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Jan, Surely you couldn't have known I named my first liver Bob! This is too funny!

Patty

-----Original Message-----From: Ian & Janet [mailto:ianjanaust@...] Sent: Sunday, August 10, 2003 3:54 PM Subject: [ ] Patty

Hi Patty......if only....what a scream....you didnt know it....nor did anyone else.....the answer is simple...your nine months pregnant. Youll have to name your tub billybub instead of billybong ! hee hee.....gosh I must log off if thats the best I can do to cheer you up.

Love Jan

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Hoity toidy means uppity, how do you say... the privileged class. Little

fingers up in the air.

Patty

Re: [ ] Patty

Patty, Well now you have to explain what hoity toidy is!!!!!!!!!!!!

-NH

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Patty,

Just my curiosity, if you have a varices and get the transplant, does the varices repair its self or do you still have to have the banding/injections?? I go for my followup EGD on the 29th and it was my understanding that this type of thing had to be controlled before considering transplant. Did I misunderstand??

Thanks for the info.

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Patty,

Thanks. I wasn't sure if they healed on their own after transplant or if you still had to deal with them. I figured no new ones would form but didn't realize they healed on their own. Thanks for the info.

I hope you are doing great and I pray each night that you will get your "phone call".

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Patty,

I totally understand the statement about laughter. This weekend I was so depressed. I was really on a "pity party." I was feeling horrible and ex-father in law passed away after a very short but difficult bout with cancer. Son was really upset and I just could not stop crying.

Finally I said "Enough is enough" and went to bed. Woke up the am feeling much better, but if I didn't laugh and joke about this, I think I would go crazy. Everyone says "you look so good and you can still work." They do not know what a struggle this is. It takes all weekend to get over the week. I've finally come to the conclusion that when I sell this house, I am either going to go out on disability (Hepatologist has been screaming for this for a long time) or find a part time job that I enjoy. Maybe work for a temp agency so I can work when I feel well. They are begging for people with experience up here.

Keep laughing, and I will too.

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,

The varacies are caused because of the backpressure through the portal vein when it cannot go through a scarred liver. The pressure is relieved by the transplant and the varacies heal. If they are actively bleeding then they need to be banded at the time. I am not aware this precludes transplant as it is one of the hallmarks of liver failure - portal hypertension. Hope I answered your question.

Patty

-----Original Message-----From: MKANTZLE@... [mailto:MKANTZLE@...] Sent: Monday, August 11, 2003 8:27 PM Subject: Re: [ ] PattyPatty,Just my curiosity, if you have a varices and get the transplant, does the varices repair its self or do you still have to have the banding/injections?? I go for my followup EGD on the 29th and it was my understanding that this type of thing had to be controlled before considering transplant. Did I misunderstand??Thanks for the info.

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,

Sorry about your ex-father in law. It is still hard since he is your son's grandfather and you didn't divorce him!

Cry, it feels good. Sometimes it takes stopping working to get your life back. Maybe it's time... you can always go back to work if you want later.

Patty

-----Original Message-----From: MKANTZLE@... [mailto:MKANTZLE@...] Sent: Monday, August 11, 2003 10:01 PM Subject: Re: [ ] PattyPatty,I totally understand the statement about laughter. This weekend I was so depressed. I was really on a "pity party." I was feeling horrible and ex-father in law passed away after a very short but difficult bout with cancer. Son was really upset and I just could not stop crying. Finally I said "Enough is enough" and went to bed. Woke up the am feeling much better, but if I didn't laugh and joke about this, I think I would go crazy. Everyone says "you look so good and you can still work." They do not know what a struggle this is. It takes all weekend to get over the week. I've finally come to the conclusion that when I sell this house, I am either going to go out on disability (Hepatologist has been screaming for this for a long time) or find a part time job that I enjoy. Maybe work for a temp agency so I can work when I feel well. They are begging for people with experience up here. Keep laughing, and I will too.

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Dear Patty,

I for one am glad that there are options for you. I know that they give O livers to patients who really need the transplant when one of their own type don't come along. I am an O so it was explained to me - We want the most needy to get the liver and you fit that category.

Isn't it strange how the MELD score fluctuates so much? The must look at a combined score, which yours have obviously been high, that evens out the ups and downs. In June I was a 9 so they relaxed a bit but I figured out my number from last week and it was 14 because the INR had jumped. I believe the intention is to tx those who need it most and obviously you are more than ready!!!!

Let me add to Ruth's gentle hugs - the breeze carries them from me to you.

Amy

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Amy, The fluctuations are amazing, in June I had a MELD of 21 because my Bilirubin was 13 and INR 1.4. The bilirubin is 6.1 now and the INR still 1.4 so my MELD dropped to 18. I am much deteriorated in overall health. There is a big difference between 18 and 21 in the ranking. It's hard to wait & see what happens. I cannot imagine your situation where you are obviously in liver trouble (with a 14) , I remember when you were restricted in travel, have you been able to get on with your life or do you still have it in your mind that you have top have the surgery?

Patty

-----Original Message-----From: holzboog@... [mailto:holzboog@...] Sent: Tuesday, August 12, 2003 2:10 PM Subject: [ ] Re: Patty

Dear Patty, I for one am glad that there are options for you. I know that they give O livers to patients who really need the transplant when one of their own type don't come along. I am an O so it was explained to me - We want the most needy to get the liver and you fit that category. Isn't it strange how the MELD score fluctuates so much? The must look at a combined score, which yours have obviously been high, that evens out the ups and downs. In June I was a 9 so they relaxed a bit but I figured out my number from last week and it was 14 because the INR had jumped. I believe the intention is to tx those who need it most and obviously you are more than ready!!!! Let me add to Ruth's gentle hugs - the breeze carries them from me to you.Amy

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Hi Patty, Been wanting to write for quite awhile to thankyou for sending

me that site on transplants. It was a little hard to understand. I might

not of been doing it right . Couldn't get a breakdown of the different

organs. Didn't know how to go about it though. One thing I did find out.

Even though where I go for my Hep, the hospital there is top knotch for

cancer but they do not do many transplants at all compare to the

hospitals in MA. I should of started going to MA. My Insurance covers

that area. Especially the Lahey Clinic that JoAnne just sent the site

for. It's a two hour ride for me though. I chose Darthmouth for the 1

hour ride and it's easy to get too. Darthmouth only does less than 300

transplants a year and MA does like 3,000 to 5,000. I forget the exact #

but that is quite a difference! But of course MA is a much larger area

with population. Are you feeling better? Do you get the option of both

livers? (O and B ) whichever comes first? You haven't sent in any more

pictures. Is that hard to do? Do you scan the photo onto your computer

and then forward it somehow? Take Care! -NH ( I STILL WANT TO

HEAR ABOUT YOUR FAMILY!?)

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  • 2 weeks later...

Patty,

What a wonderful answer to prayer, God provided a liver taylor made for you. Patty, we will be praying for your recovery and healing and comfort for the donor family. It is so kind of you and Karl to let us know your updates.

With Love,

Ruthholzboog@... wrote:

Dear Patty, My heart and prayers are with you. I'll be thinking of you all day!!!!!!!!! We'll be anxiously awaiting word from Karl.God bless!Amy

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Patty, as I've told you in private messages, you've always been an inspiration to me because of your generousity, tenacity, spirit, and humor. I'm so very glad things are going well for you.

Harper

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,

while I appreciate it very much that all are concerned about Patty's wellbeing I would like to ask NOT to call the hospital.

Patty was operated again this morning and is still in ICU. It is a very difficult situation and I hope that we will come out of it okay.The nurses in ICU are very busy and have better things to do than answer phone calls from NON-Family. Please respect our privacy. It is already hard on me to deal with this and I will do my best to keep everyone informed. As soon as Patty leaves ICU I know that she will recover soon and I will be able to bring her home. Once home she will be on-line and be in touch with all of you.

Thank you for understanding.

Karl

-----Original Message-----From: gina413@... [mailto:gina413@...] Sent: Monday, September 01, 2003 6:09 PM Subject: [ ] Patty

Everyone: I just called Memorial Hospital (305-585-1111) to see if perhaps Patty was in a regular room. As of yet, I was told that she was still in the ICU. I talked to one of the nurses on the transplant floor and was told that she was not there and could not tell me how long she would be in the ICU, as it varies.

In speaking with this nurse she told me that live flowers were not allowed on that floor (only silk).

The following is her address (minus the Room No., of course, still waiting on that):

Memorial Hospital

Transplant Floor

W. Wing 15

1611 NW 12th Avenue

Miami, FL 33136

I am going to call back and see if they will put me through to the ICU to speak to a nurse and have that nurse give her a message that we are all praying and thinking of Patty.

Love and prayers -

gina

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Karl, do you have any objection if we send

cards?

Debby

[ ] Patty

Everyone: I just called

Memorial Hospital (305-585-1111) to see if perhaps Patty was in a

regular room. As of yet, I was told that she was still in the ICU.

I talked to one of the nurses on the transplant floor and was told that she was

not there and could not tell me how long she would be in the ICU, as it varies.

In speaking with this nurse she

told me that live flowers were not allowed on that floor (only silk).

The following is her address (minus

the Room No., of course, still waiting on that):

Memorial Hospital

Transplant Floor

W. Wing 15

1611 NW 12th Avenue

Miami, FL 33136

I am going to call back and see if

they will put me through to the ICU to speak to a nurse and have that nurse

give her a message that we are all praying and thinking of Patty.

Love and prayers -

gina

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Karl,

Please know that I am keeping both of you in my prayers. I hope

Patti will soon be out of ICU. I have come to have great respect

and admiration for her, as she has shared her experiences (the good,

the bad and the ugly) always with wit and humor, even when things

got rough. I do miss her here. Please take care.

nne

> ,

>

> while I appreciate it very much that all are concerned about

Patty's

> wellbeing I would like to ask NOT to call the hospital.

>

> Patty was operated again this morning and is still in ICU. It is a

very

> difficult situation and I hope that we will come out of it

okay.The nurses

> in ICU are very busy and have better things to do than answer

phone calls

> from NON-Family. Please respect our privacy. It is already hard on

me to

> deal with this and I will do my best to keep everyone informed. As

soon as

> Patty leaves ICU I know that she will recover soon and I will be

able to

> bring her home. Once home she will be on-line and be in touch with

all of

> you.

>

> Thank you for understanding.

>

> Karl

>

> [ ] Patty

>

>

> Everyone: I just called Memorial Hospital (305-585-1111)

to see if

> perhaps Patty was in a regular room. As of yet, I was told that

she was

> still in the ICU. I talked to one of the nurses on the transplant

floor and

> was told that she was not there and could not tell me how long she

would be

> in the ICU, as it varies.

>

> In speaking with this nurse she told me that live flowers were not

allowed

> on that floor (only silk).

>

> The following is her address (minus the Room No., of course, still

waiting

> on that):

>

> Memorial Hospital

> Transplant Floor

> W. Wing 15

> 1611 NW 12th Avenue

> Miami, FL 33136

>

> I am going to call back and see if they will put me through to the

ICU to

> speak to a nurse and have that nurse give her a message that we

are all

> praying and thinking of Patty.

>

> Love and prayers -

> gina

>

>

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HI Karl:

Thanks for the update on Patty... Tell Her I said hello, and hope she has a speedy recovery. We think of her often.

That will be intersting if she is on A & E.. Let us know for sure is she will be on , in December.

Again, Thanks Karl-- she is in our thoughts.

Love, Gaynel--- Say hi and give her a hug for me...

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