Patty

[Guest guest]

Hi Patty: It is so good to hear from you, I think of you often. You have been through so much I pray 2003 will be the best year ever.

I try to keep up with everyone but there are so many new folks in the group. I scroll through the digest as much as possible. When I saw you were back I had to read your post. You sure are a tough cookie. Hope to talk to you soon.

Genny/Jodi's Mom

Living Donor Transplant 5-18-01

University of Miami

[Guest guest]

Genny,

I think also about you. How are you, as a living donor doing?

Patty

-----Original Message-----From: Nannygenny@... [mailto:Nannygenny@...]Sent: Tuesday, January 07, 2003 6:34 PM Subject: Re: [ ]Patty Hi Patty: It is so good to hear from you, I think of you often. You have been through so much I pray 2003 will be the best year ever. I try to keep up with everyone but there are so many new folks in the group. I scroll through the digest as much as possible. When I saw you were back I had to read your post. You sure are a tough cookie. Hope to talk to you soon. Genny/Jodi's Mom Living Donor Transplant 5-18-01 University of Miami

[Guest guest]

Patty,

So sorry to hear that you are facing the prospect of another liver transplant soon. I cannot even imagine going through one.

Please know that you are in my prayers.

By the way, I'm pretty new here. I had a liver biopsy Dec 27, 02 and was told I have AIH on Jan 6, 03.

W

[Guest guest]

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Thursday, March 06, 2003 3:43 PM Subject: Re: [ ] Patty

Patty,

So sorry to hear that you are facing the prospect of another liver transplant soon. I cannot even imagine going through one.

Please know that you are in my prayers.

By the way, I'm pretty new here. I had a liver biopsy Dec 27, 02 and was told I have AIH on Jan 6, 03.

W

[Guest guest]

Thanks , I recognize your name, you may be new but you have been real active. One thing I appreciate, prayers help. Thanks, Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Thursday, March 06, 2003 3:43 PM Subject: Re: [ ] Patty

Patty,

So sorry to hear that you are facing the prospect of another liver transplant soon. I cannot even imagine going through one.

Please know that you are in my prayers.

By the way, I'm pretty new here. I had a liver biopsy Dec 27, 02 and was told I have AIH on Jan 6, 03.

W

[Guest guest]

Hi Patty: Genny here

I am so sorry to here your not doing well and may need another transplant. It doesn't seem fair you have to go through all of this again.

Please know your in my thoughts and prayers. I was so happy you came to see me in Miami. I just wished Jodi could have met you.

I know to her it seems like she does know you guys cause I have talked about you all so much, and still do.

Your one of the strongest gals I've ever met and I know you will lick this too.

Take care and God bless.

Genny

[Guest guest]

Hi Patty: I wish your numbers were better and I had an extra liver for you. I know how special you are with all the folks at so I bet they are looking hard for you one. If there is ever anything I can do it would mean a lot to me for you to ask.

Will certainly remember you in my prayers.

Genny/Jodi's Mom

[Guest guest]

Thanks Genny, You've always been supportive, I really glad I got to meet you (and all your parents!) I remember they were all there! The folks at UM do look out for me, I know they are keeping me in mind but as we all know there are lots of people in line! Dr. Tzakis is most concerned now with my weight. I am slipping backwards, I would like to say I am eating like a horse but the truth is I don't have much of an appetite. You are so sweet to even think about having some more liver for me... I think you've done your share of donating. I"ll take those prayers though.

Hope all is well with you & Jodi & all your parents. Coming to our party?

Patty

-----Original Message-----From: Nannygenny@... [mailto:Nannygenny@...] Sent: Friday, April 11, 2003 7:09 PM Subject: Re: [ ] Patty Hi Patty: I wish your numbers were better and I had an extra liver for you. I know how special you are with all the folks at so I bet they are looking hard for you one. If there is ever anything I can do it would mean a lot to me for you to ask. Will certainly remember you in my prayers. Genny/Jodi's Mom

[Guest guest]

Has anyone been on effexor and not liked it at all and changed to celexa or

lexapro.....I am tapering off my effexor because of weight gain, constipation

and no sex drive....I know the others have same effect on some people....Just

curious to know if anyone has tried effexor and liked something else

better???? thank you

[Guest guest]

Jerry,

They put me back on prograf in November as soon as my WBC count was over

1.0. so I was off for three months. It was not until Jan when they saw my

Enzymes were up, did a biopsy and saw the ducts were disappearing that they

diagnosed the chronic rejection. I was on 2.5/2.5 then they reduced it to

2/2 in March, then 1.5 the past few weeks when my creatine went up. On 1.5

my LFT's are increasing but my kidneys went back to normal. So they will

keep me at this level till transplant. During the time I was off prograf

transplant monitored my blood weekly and I never had any increases so there

was no indication of the chronic rejection until it was too late, as I

understand it there was no choice nor any alternative. Oh well, life goes

on.

2/2 is good for you (I suspect you weigh more than I) so you have done well.

As you know, anyone needing a new liver because of one lost through AIH or

any other reason who used herbs would be kicked out so fast their pants

would be burning before they even knew what they sat in !

Patty

[ ] Patty

Patty..... Right now I'm back at 2mgs. twice a day...for awhile after my Dx

I was on 3 mgs. twice a day ...but have responded well as you can see....the

Cleveland Clinic stays right on top of their post-transplants....(enen tho I

only see them whenever there is a spike i my monthly bloods)....have they

taken you off immunos altogether now. pre-transplant? I know they took you

of while in chemo but did they go back or decide it was too late?

love jerry

[Guest guest]

Jerry:

Do you live in Cleveland? If you aren't a doctor, who are you? (tongue in cheek). Not trying to get too personal or anything....Marty

RE: [ ] Patty

Jerry,They put me back on prograf in November as soon as my WBC count was over1.0. so I was off for three months. It was not until Jan when they saw myEnzymes were up, did a biopsy and saw the ducts were disappearing that theydiagnosed the chronic rejection. I was on 2.5/2.5 then they reduced it to2/2 in March, then 1.5 the past few weeks when my creatine went up. On 1.5my LFT's are increasing but my kidneys went back to normal. So they willkeep me at this level till transplant. During the time I was off prograftransplant monitored my blood weekly and I never had any increases so therewas no indication of the chronic rejection until it was too late, as Iunderstand it there was no choice nor any alternative. Oh well, life goeson.2/2 is good for you (I suspect you weigh more than I) so you have done well.As you know, anyone needing a new liver because of one lost through AIH orany other reason who used herbs would be kicked out so fast their pantswould be burning before they even knew what they sat in !Patty-----Original Message-----From: gefox@... [mailto:gefox@...] Sent: Thursday, May 15, 2003 2:41 AM Subject: [ ] PattyPatty..... Right now I'm back at 2mgs. twice a day...for awhile after my DxI was on 3 mgs. twice a day ...but have responded well as you can see....theCleveland Clinic stays right on top of their post-transplants....(enen tho Ionly see them whenever there is a spike i my monthly bloods)....have theytaken you off immunos altogether now. pre-transplant? I know they took youof while in chemo but did they go back or decide it was too late?love jerry

[Guest guest]

Marty...I live in Akron...about 30 mile south of Cleveland

it is well documented that I am a dirty old man....but still all

cute....

love jerry

Jerry:

Do you live in Cleveland? If you aren't a doctor, who are you? (tongue in cheek). Not trying to get too personal or anything....Marty

RE: [ ] Patty

Jerry,They put me back on prograf in November as soon as my WBC count was over1.0. so I was off for three months. It was not until Jan when they saw myEnzymes were up, did a biopsy and saw the ducts were disappearing that theydiagnosed the chronic rejection. I was on 2.5/2.5 then they reduced it to2/2 in March, then 1.5 the past few weeks when my creatine went up. On 1.5my LFT's are increasing but my kidneys went back to normal. So they willkeep me at this level till transplant. During the time I was off prograftransplant monitored my blood weekly and I never had any increases so therewas no indication of the chronic rejection until it was too late, as Iunderstand it there was no choice nor any alternative. Oh well, life goeson.2/2 is good for you (I suspect you weigh more than I) so you have done well.As you know, anyone needing a new liver because of one lost through AIH orany other reason who used herbs would be kicked out so fast their pantswould be burning before they even knew what they sat in !Patty-----Original Message-----From: gefox@... [mailto:gefox@...] Sent: Thursday, May 15, 2003 2:41 AM Subject: [ ] PattyPatty..... Right now I'm back at 2mgs. twice a day...for awhile after my DxI was on 3 mgs. twice a day ...but have responded well as you can see....theCleveland Clinic stays right on top of their post-transplants....(enen tho Ionly see them whenever there is a spike i my monthly bloods)....have theytaken you off immunos altogether now. pre-transplant? I know they took youof while in chemo but did they go back or decide it was too late?love jerry

[Guest guest]

Jerry:

I hear "Cleveland Rocks!" In a fit of passion and foolishness some time in the past year, I thought I would move to Cleveland and go to Mortuary Science school. And if I ever need a liver transplant, Cleveland Clinic sounds double good! Let's see....while studying cadavirs and waiting for a liver I could.....I won't go there! It must be late! Marty

Re: [ ] Patty

Marty...I live in Akron...about 30 mile south of Clevelandit is well documented that I am a dirty old man....but still allcute....love jerry

[Guest guest]

[ ] Patty

Patty,I agree with , I think it is a great Idea to have everyone re-introduce themselves. I am also new to the group and reading all the bio's really helps in comparing symptoms, diagnosis and the different treatments.

Take care,

Shirlee (Wa State)

[Guest guest]

Patty I love your sense of humor and it sounds like your husband has a good one too.

the

WV hillbilly

[Guest guest]

Patty....you are one strong & compassionate woman....how much longer do you

think before your transplant or do you get a call suddenly? I want you to

know that if you suddenly go into hospital, youll be taking all our love &

prayers with you.

Love Jan

..

>

>

[Guest guest]

Thanks Jan,

It will be sudden, I have been expecting this 'sudden' call for 6 weeks now.

I actually received an email from my transplant surgeon today telling me

they haven't forgotten about me, that the next 'B' liver that comes in is

mine. Well I've heard that too many times now. Makes me wish for 'O' blood

type, or even 'A'. I will e-mail this group before I go, unless I'm not home

when I get the call then I will have my husband do it for me. I appreciate

all of the encouragement I have gotten from this group.

Support does matter.... And children.... No fighting while I'm gone!

I know my husband is the one who will need the support especially during

those first few days when everything is scary.

Patty

Re: [ ] Patty

Patty....you are one strong & compassionate woman....how much longer do you

think before your transplant or do you get a call suddenly? I want you to

know that if you suddenly go into hospital, youll be taking all our love &

prayers with you. Love Jan .

>

>

[Guest guest]

Allida,

To assist you with the picture remember the spleen & liver are next to each other not on top of each other, so I am symmetrical, except the liver started about two weeks ago to bulge out on the right side so it I have a nice bulge coming off the right side a s well. I can't imaging my spleen weighing 8 1/2 pounds, I only weigh 130 that would put me down to 121 1/2, then my liver must be equally that size so I'm now down to 113, wow at 5'6" I am in trouble! They better hurry up with that liver, and they better make it a big one! I appreciate your kind words but don't you think the time should have come???

Patty

-----Original Message-----From: Allida Lane [mailto:twoshea4@...] Sent: Sunday, June 15, 2003 11:43 AM Subject: [ ] Patty

Dear Patty,

After reading your post, my imagination went into overdrive trying to picture how very large your tummy must be! I remember when my brother had his spleen taken out, it weighed 8 1/2 pounds, and he looked like he was at least 18 months pregnant. I can only imagine how much bigger you must be with the enlarged liver added. My heart just goes out to you, and I am praying everyday that the call will come, and your new life will begin. I know God will answer in good time! Your positive outlook, and great sense of humor will stand you in good stead until the time comes. Keep the faith! Allida

[Guest guest]

Patty: Hang in there. I will keep you in my prayers! Marty

RE: [ ] Patty

Allida,

To assist you with the picture remember the spleen & liver are next to each other not on top of each other, so I am symmetrical, except the liver started about two weeks ago to bulge out on the right side so it I have a nice bulge coming off the right side a s well. I can't imaging my spleen weighing 8 1/2 pounds, I only weigh 130 that would put me down to 121 1/2, then my liver must be equally that size so I'm now down to 113, wow at 5'6" I am in trouble! They better hurry up with that liver, and they better make it a big one! I appreciate your kind words but don't you think the time should have come???

Patty

-----Original Message-----From: Allida Lane [mailto:twoshea4@...] Sent: Sunday, June 15, 2003 11:43 AM Subject: [ ] Patty

Dear Patty,

After reading your post, my imagination went into overdrive trying to picture how very large your tummy must be! I remember when my brother had his spleen taken out, it weighed 8 1/2 pounds, and he looked like he was at least 18 months pregnant. I can only imagine how much bigger you must be with the enlarged liver added. My heart just goes out to you, and I am praying everyday that the call will come, and your new life will begin. I know God will answer in good time! Your positive outlook, and great sense of humor will stand you in good stead until the time comes. Keep the faith! Allida

[Guest guest]

Ginger, I'd love to see you but I am in Florida. Marcy is in West Columbia. Let me know when you are headed south!

Patty

-----Original Message-----From: gehud119@... [mailto:gehud119@...] Sent: Thursday, June 19, 2003 1:00 AM Subject: [ ] PattyHey, Patty, Did I read that you are in West Columbia? My sister lives there and I am planning on coming up that way sometime next month.Maybe we could do lunch!Hugs, Ginger

[Guest guest]

Patty,

I agree. I just can't find enough time in the day to keep my house clean. Very shortly I'm selling this house and buying a condo and getting a job that is fun. I don't care if I'm flipping burgers at Mcs. For once in my life I want to do what I want just because I want to, not because I have to support my family. Gee, I'm whining now. I'll go.

When I find this "wonderful stress free job that I want to do" I'll join Tony in his pottery class. I'll make a southern pass and pick you up and we will all go up north to visit.

[Guest guest]

Judy,

Dr. Bookman had an office across from St. and also one in Midwest

City. I know he practices at St because I was hospitalized there a

couple of times. Back in the 80's they put me in the hospital overnight for

a biopsy, times have changed. I am originally from New England and I thought

OKC was hot. I then moved to Miami and found out what hot really means. I

miss OKC though. I still have some good friends there. Are you awaiting a

transplant or being followed in case you do? Good luck to you.

Patty

[ ] Patty

When I was diagnosed with AIH (1994), my GI Dr. Welch

referred me to Dr. McFadden at the Nazi Zuhdi

Transplant Center at Integris Baptist Hospital. Dr.

McFadden moved to Phoenix in 1999 and I'm now with Dr.

Ahmet Gurakar with the Transplant Center. Dr. Gurakar

is good, but I do miss Dr. McFadden. He really had a

good sense of humor.

I've lived in OKC all my life. Spent the first 19

years in the south part of the city, then married and

moved to the northwest part.

Overall, we have pretty good weather. It is really

HOT here right now, but usually is in July and August.

It seems hotter now than when I was growing up, but

there wasn't hardly anything air conditioned, so we

didn't know any different. Now that I'm older and

everything is air-conditioned, this really hot weather

wears me out.

What hospital was your doctor in OKC affiliated with??

--- wrote:

>

[Guest guest]

Good, I hope you can stay with that small a dose. Good luck! Hope fully you

will stay LFT elevation free!

Patty

[ ] Patty

Dr. Gurakar is watching me with labs right now. I'll

probably be going to see him in August. I've had

success with prednisone (currently 5mg/day) and

Cellcept (currently 1000mg/day). Imuran is poison for

me. I was down to 2.5mg pred and 500mg Cellcept a

couple of months ago, but my lft's went back up. I

don't think I will ever be free of prednisone. I'm

really surprised I have been able to maintain on

5mg/day.

--- wrote:

>

[Guest guest]

Jan,

Cool idea.

Just today my husband was talking about a mirror (the bathroom when we bought it had a mirrored wall ICK) Anyway the mirrored wall is gone, the contractor smashed it to get it off the wall, I told him breaking a mirror is 7 years bad luck & he said he had lots of bad luck coming...

..

Anyway it doesn't need a huge mirror so I want it to be creative. Mosaic sounds great. Now, is the mosaic around the edge or is it all over the mirror so you see yourself fragmented and disjointed. This is a guest bathroom so it can be as weird as I want.

The bathroom is between the second & third bedrooms, Karl & I have three bedrooms but there is only two of us, so anyone can come visit.

Can you tell me more???

-----Original Message-----From: Ian & Janet [mailto:ianjanaust@...] Sent: Wednesday, July 16, 2003 5:45 PM Subject: [ ] Patty

Hi patty....your new bathroom sounds a dream. I have a tiled jade & white kitchen. Just a thought patty...but have you considered retaining some tiles, smash them up and making a mosaic mirror for your bathroom? A friend of mine did that and the effect is awesome.

Love Jan

[Guest guest]

, That sounds way too familiar, much like a time before my first transplant. That feeling like my skin would split was awful. I could not sit on the floor. Yeah, you need a diuretic. I took Aldactone a 'potassium sparing diuretic's don't know if you've ever heard of it. My sympathies are with you.sounds like your liver is quiet unhealthy (I probably didn't need to say that).

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Wednesday, July 16, 2003 10:23 PM Subject: [ ] Patty

Patty,

Thanks. I am on major diuretics. I was already on 20 mg of lasix a day, doc upped it to 40 mg a day because I was retaining so much fluid. I gained like 8+ lbs in matter of days so he added amiloride HCL. I dropped all the weight, but then keep having the fluid retention bounce back and forth despite the diuretics. No way can I do without the diuretics. Even with them, sometimes my skin is so tight it feels like it will split open!

W