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Janet, a transplant is by no means the end of the world. In fact in my case it is the re~beginning of my life. I was diagnosed in July 1996 at the ripe old age of 30( LOL)

and was transplanted on 3~11~97 at Mayo in Rochester, MN

I thought when I got the diagnosis, that it was the end of my life. I was wrong. Today even though my stamina may not be that great and I still do tire easily, it is not like the fatigue that I felt pre~ transplant. I don't think anyone can understand that fatigue but someone else who has had or has liver disease. I have a life now, and even tough I have to take meds the rest of my life, so what, I am alive and that is all that counts.

The meds are hard on the body, but they get reduced as time goes on.

God gave me a blessing actually when he gave me the liver disesase, sounds funny, but true. Through this disease and transplant, I became closer to my higher power whom I know as God, and now understand thanks to the help of my pastor why even " good people " get sick too. I have met so many wonderful people and made 2 very good best friends through it all. One had a transplant at Mayo 3 months after me, and 1 is waiting for a transplant with PBC for over 2 1/2 years. God works in mysterious ways.

I am more aware now days of just how precious life is and how important each day is. You always hear the phrase; " Live today as if it were your last " Well I try to do that.

I am also thankful for the chance to be in touch with my donor's mother, who is a very sweet woman.

Through it all were good days and bad, and now I am 44 months out from transplant, and if I were told tomorrow that my new liver was failing, and I needed another transplant, I would not blink an eye, I would be there with bells on. Because it is not as bad as a person really thinks. And it is another chance at life.

Janet, if you are told you need that transplant, GO FOR IT!!! And don't just do it for your husband, DO IT FOR YOU!!!

If you have any questions or comments feel free to e~mail me at: tlknj@...

Take care and God Bless!!!! Lori Cummins Liver Tx 3~11~97

[ ] Transplant

Dear All

Apologies up front for the long, rambling thing that follows.

Saw a Hepatologist this week for the first time, (the doctor I see at my local hospital is a gastro-enterologist). The Hep told me that a) I will definitely get more oesophageal bleeds which could be fatal, and B) that I will certainly need a liver transplant though not yet. The time scale I cannot remember (my brain cut out with shock so I didn't take it all in) but I think he indicated around 2 years or maybe sooner depending on how I am doing. I hope I got this time scale wrong! I see him again in 6 weeks and will make sure I ask him again - and I'll write it down!

Help - I'm scared. I had accepted the fact of more bleeds but hearing it said out loud that I will definitely need a transplant has brought home to me the full horror of it all. I know I should have expected it but, like dying, it's something that happens to other people. I think the whole thing, bleeding in July and now this news has come as such an almighty shock because up until the bleed I was feeling well and functioning normally, thinking everything healthwise was going fine. I should not complain really, I have taken 33 years to reach this stage.

The trouble is, I don't want a transplant, I want to keep my old, tatty and worn-out liver. Still, I expect if it gets to be a matter of new liver or die, then there is no choice really. If there was just me I might decide to say no thanks but I have a husband who loves me so much I could not do that to him.

Sorry to be such a whimp and I will stop whining soon. I know that lots of you have gone through transplantation and I would so appreciate hearing from anyone about how they got on and anything else to do with it.

PS: I asked a couple of questions about things we had been wondering about in the post recently - these are covered in a separate mail.

Thanks in advance

Janet

UK

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Janet,

Calm down, they told me that perhaps I would need a transplant in two years

and that was 5 years ago. Take it day by day. Can they bind those varices?

ask your doctor. Doctors have a way of showing you the worst case

scenario.....they are not at all like Dr. Quinn Medicine Women. See first if

they suggest a way of controlling those bleeds, and take it from there. And

I have a friend who had a transplant and is doing just fine...so, a

transplant could be a blessing.

lydia 2

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Janet.....

What are you worried about? If you need a transplant an are able to get

one -- get it. i was transplanted 10-19-95. When I woke up in recovery

it was as if I had a new life. The change was immediate--- like night

and day.Transplants are not given out irresponsibly.... they are the

answer when the only alternative is death.

I think I got mine in the nick of time. I was litterally living day to

day . I bled for over 2 yrs.. coupled wth encephalopathy,

ascites,edema,etc,etc...my quality of life was very poor and I could

have died at any moment. Transplant changed all that

The procedure was any thing that I thought it would be. Recovery was

incredibly quick and I only take 1 med (for anti-rejection-Prograf

2mg.ibid.) That`s it. I`ve never had any rejection problems nor others

concening the transplant itself. My Aih is not related to the transpant

as far as I know, however my cancer is related to te prograf(but I`m in

a minority as to that side effect) . One shouldn`t fear transplant but

rather embrace it as " the gift of life " . See Lori C.`s reponse and her

experiences.. I, like her, have a new faith in my Higher Power--God,

and trust Him to do for me what I can`t do for myself. I know that no

matter what happens--- it will be alright. BTW concerning Zoloft--

I took 100mgs./day from `93-`99 with nothing but good effects- it kept

me on an even keel... I decided that I wanted to " feel " a little bit

more and slowly stopped last year. I instead put my trust in my higher

power and I manage to never get depressed. I use nothing but prayer and

meditation. I still cope very nicely-- even tough this has been a tough

year----besides cancer and AIH I have had some bad business experiences

with " friends " whom I trusted and now have legal and money

problems----oh well what ever is going to happen will and I don`t worry

about things that haven`t yet happened.

Janet take GOOD care of yourself, don`t be scared, don`t worry about

future events-- they never turn out like you think they will....

sclerotherapy and/or banding should lessen your bleeds..mind your doctor

and have a fun,good time with your life.

Love and serenity jerry

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Janet,

I haven't had any bleeds yet, and I don't understand why, at this point,

after just dealing with colon/rectal cancer, its something that would flip me

over for sure. But,

life shines on me and I keep trucking. I try not to exasperate the varices

by not drinking extremely cold or hot drinks. When I eat something like

bread or something diffficult to swallow I chase it with a beverage. Janet

my e-mail address is

solclaro@..., if ever you feel a need for direct talk or just having a

plain lousy day. I have alot of those. I am house bound and wouldn't mind

the interaction.

Lydia 2

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Thanks Jerry

Glad you are so happy with your new liver. I suppose I am scared of the

pain - its a major operation isn't it - and also of silly little things

(which are big problems for me) such as: I cannot swallow tablets with

liquid, only with food if the tablets are small; and I don't know how I

would manage with a tube being put up my nose as the space at the top of my

nostrils is very, very narrow. Also, what if the new liver fails and there

is not another available?

Of course, I may not get one anyway, they are quite scarce aren't they. .

I would appreciate any more info on transplants you may have, I note you do

not mention how the actual procedure felt, pretty awful I imagine.

How does one know when one is developing ascites? How does it differ from

the increased girth that comes with middle age?

Sorry to hear about all your troubles, you are remarkably brave

I have had banding for the bleeds and my gastro doctor is going to do

6-monthly endoscopies to check on things. What I want to know is how long

does it take for new varices to form?

Thanks again

Janet

UK

Re: [ ] Transplant

> Janet.....

> What are you worried about? If you need a transplant an are able to get

> one -- get it. i was transplanted 10-19-95. When I woke up in recovery

> it was as if I had a new life. The change was immediate--- like night

> and day.Transplants are not given out irresponsibly.... they are the

> answer when the only alternative is death.

> I think I got mine in the nick of time. I was litterally living day to

> day . I bled for over 2 yrs.. coupled wth encephalopathy,

> ascites,edema,etc,etc...my quality of life was very poor and I could

> have died at any moment. Transplant changed all that

> The procedure was any thing that I thought it would be. Recovery was

> incredibly quick and I only take 1 med (for anti-rejection-Prograf

> 2mg.ibid.) That`s it. I`ve never had any rejection problems nor others

> concening the transplant itself. My Aih is not related to the transpant

> as far as I know, however my cancer is related to te prograf(but I`m in

> a minority as to that side effect) . One shouldn`t fear transplant but

> rather embrace it as " the gift of life " . See Lori C.`s reponse and her

> experiences.. I, like her, have a new faith in my Higher Power--God,

> and trust Him to do for me what I can`t do for myself. I know that no

> matter what happens--- it will be alright. BTW concerning Zoloft--

> I took 100mgs./day from `93-`99 with nothing but good effects- it kept

> me on an even keel... I decided that I wanted to " feel " a little bit

> more and slowly stopped last year. I instead put my trust in my higher

> power and I manage to never get depressed. I use nothing but prayer and

> meditation. I still cope very nicely-- even tough this has been a tough

> year----besides cancer and AIH I have had some bad business experiences

> with " friends " whom I trusted and now have legal and money

> problems----oh well what ever is going to happen will and I don`t worry

> about things that haven`t yet happened.

> Janet take GOOD care of yourself, don`t be scared, don`t worry about

> future events-- they never turn out like you think they will....

> sclerotherapy and/or banding should lessen your bleeds..mind your doctor

> and have a fun,good time with your life.

> Love and serenity jerry

>

>

>

>

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Thanks Lydia2

I know, I am mentally rushing around like a headless chicken! After all

these years of having AIH and chugging along reasonably smoothly the bleed

and the not good prognosis/transplant need has knocked me sideways.

Its a comfort to hear you are still doing OK 5 years after being told you

would need a transplant. Yes, they have bound the varices and my gastro

doctor will do 6-monthly endoscopies to check on things. Both he and the

hepatologist have told me I will have more bleeds and they could be fatal.

Do you have bleeds from eosophageal varices?

Thanks again

Janet

UK

Re: [ ] Transplant

> Janet,

> Calm down, they told me that perhaps I would need a transplant in two

years

> and that was 5 years ago. Take it day by day. Can they bind those

varices?

> ask your doctor. Doctors have a way of showing you the worst case

> scenario.....they are not at all like Dr. Quinn Medicine Women. See first

if

> they suggest a way of controlling those bleeds, and take it from there.

And

> I have a friend who had a transplant and is doing just fine...so, a

> transplant could be a blessing.

> lydia 2

>

>

>

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Janet..... If I may..... Please try not to project so much .... worrying

about future events is so counter productive and things never turn out

as you imagine they will :)

My transplant was suprisingly less painfu;l than one would imagine.. and

yes it is a very major surgery. I wore a pager for about 10 mos. but I

received a phone call at 8:30am Oct. 19, 1995 from the Cleveland clinic

telling me that a donor liver was available and for me to rport there as

soon as possible. I had to drive as my mother was way too nervous. (I

was the sick one and I was the one to be operated on). I got to the

hospital about 10:30 and after signing papers and such (I also dictated

a living will) I was put in a room where they began to prep me. I can`t

remember exactly but I think they gave me an I.V. with some kind of

tranquilizer in it, any way they prepped me and wheeled me down to a

holding room where I was given something else pre-op. I was pretty

aware of all going on. My mother sat with me along with my ex-wife

(my 1st wife) who had driven up there to sit with mom during the

operation. I was very calm and as a matter of fact joking quite a bit to

calm my mother who was very nervous.... I never was afraid. By 1:00 I

was in the operating room. The surgeon came in as I was joking with the

anesthesiologist . He asked my if I was afraid an d I told him no...

that I had faith that every thing would be just as it was supposed to be

and it was up to him and God. The prcedure took around 7 hrs. found out

later that they had to take me back down- just as I was coming around-

to go back in and tie off a bleeder and that was the most serious moment

of the whole procedure as I was bleeding pretty much internally. The

donor was in another room and another team of doctors were retrieving

his/her organs as they were working on me. I guess the donor saved other

lives that day also. What an unselfish family. I was in recovery for a

day and sent to a room where I spent 8 1/2 more days . As I said the

change was like night and day . At 1st I was pretty sore, but not really

unbearably so.They had me hooked up to an I`V. where I could release

measured doses of pain killer but I didn`t really have to use it much.

It wasn`t that bad. I was up walking the 2nd day. One of the most

bothersome things was the drainage tubes and bags I had hanging from my

belly...they got in my way. I got along great with all the nurses.they

kept marvelling at my quick recovery and my off beat sense of humor...we

had lots of laufghs. I know I`ll piss a lot of people off.. but te truth

is on the 3rd or 4th day I managed to get one of the nurses to tell me

where the secret smoking room was and I bummed some cigarettes from her

and would go up there 3 or 4 times a day to smoke as long as I let

someone know where I was ...this with my I.V. and drainage tubes hanging

from me. I couldn`t be released until after my post-op biopsy and the

removal of 2 of my drains.... the 3rd a T drain was left in to collect

excess bile and I was to go back in 5 weeks to have it removed but it

fell out by itself in the 4th week They gave me some pain pills to take

home with me but I flushed them down the toilet after I got home (I`m an

alcoholic) `cause I truthfully didn`t need them. At 1`st I had a bunch

of meds, to take inc. prednisone, and acyclovir and some other antibacs.

like bactrim and can`t remember what all.but within a year I was down

to just prograf which I still take daily (2mgs) and that was all. I was

told to take it easy and not drive or exert my self and to watch crowds

etc. but the day I came home put my suitcase in my room, got in my car

and went to an A.A. meeting . I didn`t miss a day in te next 7+mos. of

going to at least one meeting. I credit thier help in finding a faith in

the God of my understanding that has and is carrying me through those

things that happenin life. I am always positive, complain little,rarely

depressd and see humor in most every thing.

The tube thy will put up your nose for te operation is done while you`re

asleep. if they have to do it because you suddenly hemmhorage due to

your varices well I won`t lie it is very uncomfortable but it`s fairly

quick and you can take it. I don`t know what to tell you about pills...

cause you`re probably going to be on quite a few if your cirrhosis

increases and if you are transplanted. Basically transplants are given

to the closest (in vicinity) match that is deemed the most needy . About

10%-15% of those waiting for one here in the U.S. die each year. (I

think thats true) I know this was a very long post but there is so

much more I could tell if I had the space , and I could remember .

Love and serenity Jerry

Thanks Jerry

Glad you are so happy with your new liver. I suppose I am scared of the

pain - its a major operation isn't it - and also of silly little things

(which are big problems for me) such as: I cannot swallow tablets with

liquid, only with food if the tablets are small; and I don't know how I

would manage with a tube being put up my nose as the space at the top of my

nostrils is very, very narrow. Also, what if the new liver fails and there

is not another available?

Of course, I may not get one anyway, they are quite scarce aren't they. .

I would appreciate any more info on transplants you may have, I note you do

not mention how the actual procedure felt, pretty awful I imagine.

How does one know when one is developing ascites? How does it differ from

the increased girth that comes with middle age?

Sorry to hear about all your troubles, you are remarkably brave

I have had banding for the bleeds and my gastro doctor is going to do

6-monthly endoscopies to check on things. What I want to know is how long

does it take for new varices to form?

Thanks again

Janet

UK

Re: [ ] Transplant

> Janet.....

> What are you worried about? If you need a transplant an are able to get

> one -- get it. i was transplanted 10-19-95. When I woke up in recovery

> it was as if I had a new life. The change was immediate--- like night

> and day.Transplants are not given out irresponsibly.... they are the

> answer when the only alternative is death.

> I think I got mine in the nick of time. I was litterally living day to

> day . I bled for over 2 yrs.. coupled wth encephalopathy,

> ascites,edema,etc,etc...my quality of life was very poor and I could

> have died at any moment. Transplant changed all that

> The procedure was any thing that I thought it would be. Recovery was

> incredibly quick and I only take 1 med (for anti-rejection-Prograf

> 2mg.ibid.) That`s it. I`ve never had any rejection problems nor others

> concening the transplant itself. My Aih is not related to the transpant

> as far as I know, however my cancer is related to te prograf(but I`m in

> a minority as to that side effect) . One shouldn`t fear transplant but

> rather embrace it as " the gift of life " . See Lori C.`s reponse and her

> experiences.. I, like her, have a new faith in my Higher Power--God,

> and trust Him to do for me what I can`t do for myself. I know that no

> matter what happens--- it will be alright. BTW concerning Zoloft--

> I took 100mgs./day from `93-`99 with nothing but good effects- it kept

> me on an even keel... I decided that I wanted to " feel " a little bit

> more and slowly stopped last year. I instead put my trust in my higher

> power and I manage to never get depressed. I use nothing but prayer and

> meditation. I still cope very nicely-- even tough this has been a tough

> year----besides cancer and AIH I have had some bad business experiences

> with " friends " whom I trusted and now have legal and money

> problems----oh well what ever is going to happen will and I don`t worry

> about things that haven`t yet happened.

> Janet take GOOD care of yourself, don`t be scared, don`t worry about

> future events-- they never turn out like you think they will....

> sclerotherapy and/or banding should lessen your bleeds..mind your doctor

> and have a fun,good time with your life.

> Love and serenity jerry

>

>

>

>

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Janet ... one more thing...... you`ll know when you get ascites.... you

abdomen will grow outward and you`ll look very pregnant as it

progresses... you`ll probably have some jaundice also... if it gets very

bad it`s hard to breathe and it pushes against your heart and lungs ....

your ankles and legs may be swollen (edema) too.

jerry

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Jerry, I have those symptoms very much so. I look 6 months pregnant, edema et all, but my gastro is a dope and wont tell me anything, only my reumotologist will and I dont see her until the 5th of dec. I also would like to know if breaking out in a hot/or cold sweat and low fever are typical of this? do you know?

Christi

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Christi..... if you have ascites and edema they should be treating

it...... it is hard on your heart.... usually you`re given heavy duty

diuretics and put on low salt diet,

It`s been so long and I had so many things happening to me I don`t

remember if low fever was involved.... I do remember itching so much I

scratched my arms and chest so much they bled. Perhaps it may be worth

while seeking another gastro.

these are signs of progressed cirrhosis and should be monitored more

often....

love and serenity jerry

p.s.: maybe someone else here has had ascites and/or edema and can

describe thier experiences.... mine got bad enough to have paracentisis

done 3-4 times.

Jerry, I have those symptoms very much so. I look 6 months pregnant, edema et all, but my gastro is a dope and wont tell me anything, only my reumotologist will and I dont see her until the 5th of dec. I also would like to know if breaking out in a hot/or cold sweat and low fever are typical of this? do you know?

Christi

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I also have the itching benedryl helps start with 25mgs. I have to take at least

75mgs but only when I do not plan on doing any driving. it makes you very tired

and I also have the noght sweats.

Heidi

> egroups

>From: gefox@...

>Date: Tue, 21 Nov 2000 22:33:54 -0500 (EST)

>Reply- egroups

>Subject: Re: [ ] Transplant

>

>Christi..... if you have ascites and edema they should be treating

>it...... it is hard on your heart.... usually you`re given heavy duty

>diuretics and put on low salt diet,

>It`s been so long and I had so many things happening to me I don`t

>remember if low fever was involved.... I do remember itching so much I

>scratched my arms and chest so much they bled. Perhaps it may be worth

>while seeking another gastro.

>these are signs of progressed cirrhosis and should be monitored more

>often....

>love and serenity jerry

>

>p.s.: maybe someone else here has had ascites and/or edema and can

>describe thier experiences.... mine got bad enough to have paracentisis

>done 3-4 times.

>

>

>

>

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  • 3 years later...

Wouldn't solve the problem for most hypo. Usually the problem is

with the hypothalamus not sending out enough signal when

testosterone production is low. Even in men with primary, by the

time they got around to testicle transplant, their hypothalamus

LH/FSH system would most likely be screwy.

Armyguy

> Heart-liver-lung-kidney transplants why not testicles

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  • 6 years later...
Guest guest

Dear Judy,

Thank you! I looked at your photos on facebook. You have a wonderful family and

they took such good care of you.  I will have lots of questions, and fears, I'm

sure as the time gets closer. Right now, I don't have a date so I'm just trying

to get everything here at home ready for when I'll be gone and return home. What

precautions did you do to your house? Did you have pets?

It can be very overwhelming but I know my family will be here to help any way

they can.

The ceiling in my bedroom has a spot where there is water damage from years ago

that never got fixed. It does have mildew growing so I know that will have to be

fixed.  The list goes on......

Have a good night and I will keep you informed!

God Bless,

Jackie S.

From: Judy Telford <judy_telford@...>

Subject: [ ] transplant

Date: Sunday, July 18, 2010, 5:56 AM

 

Hi Jackie

Although I had my transplant in 1993, I don't think they have changed all that

much.  If I can be of any help, if you want to ask any questions, please email

me.  If you have a look on my facebook I put an album of pictures of my journey

through transplant.  I have been very fortunate and had very few side effects,

and although I relapsed, glivec has controlled the cml very well and I have

been

pcru for quite awhile now.  I had a 6/6 match with both my sister and my

brother

so they chose my brother because he was more available.  My thoughts and

prayers

are with you as you start this next journey, and loke all that has come your

way, I know you will manage this in the same positive way.  I'll be watching

your progress from afar and hoping it is a smooth journey

Best wishe

Judy Telford

699 zero club

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Guest guest

I've printed out your email. You have given me some very good ideas.  We only

have one bathroom but have talked about adding another for years, maybe now is

the time.

Thank you Judy.

I will keep you up to date.

Jackie S

From: Judy Telford <judy_telford@...>

Subject: [ ] transplant

Date: Monday, July 19, 2010, 7:58 AM

 

hi Jackie

We had a pet dog and when I first came home from hospital my mum was worried,

but the transplant team said this was not a problem.  Our dog lived with us but

didn't sleep in our room in his basket, he slept in another room.  It was as if

he knew I was fragile and kept his distance from me.  I had 4 children at

school

at the time, and my doctors were more concerned about what bugs they may bring

home from school.  My doctors advised me to make friends and family very aware

of how suseptible i was to bugs.  I asked my friends  not to visit while I

was

in hospital and ensued the children did not visit if they had a cold or their

friends had a cold. When I came home we had a lady come every day and clean my

bathroom and bedroom and I was the only one to use that bathroom.  For quite

awhile my husband used the main bathroom.  I didn't go to public places other

than outside parks for quite awhile, no shopping centres or anywhere in public

where I was exposed to lots of people in enclosed areas.  I cant think of any

other special arrangements we made.  I was very fortunate in that I had very

little gvhd and I really didn't have many problems with viruses or infections. 

My main problem now is being susptible to lung infections and I'm still careful

to stay away from people with colds if at all possible.  I think the best

advice

i had was to educate yourself in hospital about what medications you are on. 

Understand what you must tak and what is okay to miss if you are not feeling

well.  Read all you can about the transplant process, knowlege is powerful. 

Ask

lots of questions, try to meet with others who have been through transplant.  I

met a lady before my transplant who'd had one a few years earlier.  She is

still

a great support to me and we have become great friends, 17 years on.  Hope this

gives you somethings to help and please ask anything you want.

Judy t

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Guest guest

Dear Jackie:  I have been so sick for the past few days, and somehow missed the

message of your decision to get the BMT.  You have been a great strength for so

many of us with your responses and encouragement.  Your great Faith is going to

get you through all of this just fine.  Know that your in my prayers and the

prayers of everyone else.

What is your date to go into the hospital?  There are so many others going for

the BMT also, and I pray for the best for them too.  Please keep us all

updated.

God Bless You

A.

From: Judy Telford <judy_telford@...>

Subject: [ ] transplant

Date: Sunday, July 18, 2010, 5:56 AM

 

Hi Jackie

Although I had my transplant in 1993, I don't think they have changed all that

much.  If I can be of any help, if you want to ask any questions, please email

me.  If you have a look on my facebook I put an album of pictures of my journey

through transplant.  I have been very fortunate and had very few side effects,

and although I relapsed, glivec has controlled the cml very well and I have

been

pcru for quite awhile now.  I had a 6/6 match with both my sister and my

brother

so they chose my brother because he was more available.  My thoughts and

prayers

are with you as you start this next journey, and loke all that has come your

way, I know you will manage this in the same positive way.  I'll be watching

your progress from afar and hoping it is a smooth journey

Best wishe

Judy Telford

699 zero club

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