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Pardon my ignorance again (excuse me Turk if you think I am stupid not

everyone is as smart as you). What is DILATED CARDIOMYOPOTHY? I have

cardiomyopothy idiomathic . I have not asked many question (that maybe why I

am so STUPID about so many things i have been in denial for a long time. It

was difficult for me to grab that this was happening to me. Now I am catching

up with learning about what is happening, I was told by my MD that the good

news was that I could last 5 years that was around three years ago and

between my MUGA, Stress test and echo cardiogram, things have not changed in

two years./ I think that is pretty good.

Tell me if you have anything like that.

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Hang in there, Rob. I was diagnosed with dilated cardiomyopathy 6 years ago

and am still kicking!

The cause of the and severity of the dilated cardiomyopathy is more

concerning than the term itself.

Also how fast is it progressing??

Doug

Death

> Hi again. I've been feeling a bit mortal again. I am 37, and was

> diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> implanted. I'm wondering if ANY of you have been diagnosed with

> Dilated Cardiomyopathy, and have been living 5 or more years since

> diagnosis.

>

> - Rob

>

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

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i was diagnosised with delated and hypo cardiomyopathy going on 7 years ago

stacie,18

Death

Hi again. I've been feeling a bit mortal again. I am 37, and was

diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

implanted. I'm wondering if ANY of you have been diagnosed with

Dilated Cardiomyopathy, and have been living 5 or more years since

diagnosis.

- Rob

Please visit the Zapper homepage at

http://www.ZapLife.org

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Hi Rob... I was dx w/DCM in '90 at the age of 44 w/an EF of 42% and

told that I could expect to need a heart tx w/in 10 yrs... at that

time my EP team wanted me to consent to a NIH protocal which involved

taking some pretty nasty drugs the side effects I was all too

familiar w/after watching my youngest son go thru agressive chemo for

lymphoma... they were going to use one of the same drugs on me as an

anti-rejection medication (cyclosporine) as it was thought my body

was rejecting my heart because it had been invaded by a virus I had

contracted ... I would have also had to have gone thru a heart bx

every six months through out the protocal which didn't much appeal to

me after having had one while I was in hsp for original dx ... I

refused this protocal much to the dismay of absolutely every one of

my medical doctors ... as it's turned out thus far it would seem I

made the right choice as I've not gotten much worse... EF went up and

there is only slight enlargement of the upper chambers of my heart

now after 12 yrs ...w/in about 5 yrs of dx I was able to get my EF up

to 51% where it has stayed since... the only reason the doctors had

for this improvement was diet and exercise and the Grace of God

because they had absolutely no explanation of why my condition

improved as it did...I got my first ICD in '94 after the only

medication available that I responded to stopped working for me and

my second in '99... that was interesting as well... the medication

was Encainide(Enkaid) which was taken off the market shortly after I

was put on it due to high mortality rates ... but it was the only med

that I responded to so I continued to get it free from manufacturer

for over a year until I started having break thru arrhythmia ...I

also have Mitral Valve Prolapse w/mild reguritation, V-tach &

Bradycardia... and am subject to vagal episodes ... so.. if it's how

long can we last after being dx w/DCM... I'm living proof that life

does go on for at least 12 yrs ... this month ... that's right ...

this week is my 12th anniversary of being dx... just realized that :)

Happy anniversary to me!!! ... Boy... time sure does fly when you're

having fun :) ... 12 yrs ago tonight I was laying in Medical

Cntr " Critical Pathways " unit on the 24th anniversary of my youngest

son's b'day, not knowing what the heck happened to me all of a sudden

and thinking " gosh... so this is what growing old is all about,

huh? ... it's not so hot! " ... but life does go on after dx... so get

out and enjoy it... you've been given at least a second chance...

perhaps more ... take advantage of it!!! :)

JES :) in NJ

God Bless America

> Hi again. I've been feeling a bit mortal again. I am 37, and was

> diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> implanted. I'm wondering if ANY of you have been diagnosed with

> Dilated Cardiomyopathy, and have been living 5 or more years since

> diagnosis.

>

> - Rob

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cyclosporine is what they have me on right now because of rejecting the

defib and my heart they got test back and thank to dcm virus is back my ef

is 15 % at the monet there hopeing to get me off this med soon althou i'm

not real sure of all side afects

stacie,18

Re: Death

Hi Rob... I was dx w/DCM in '90 at the age of 44 w/an EF of 42% and

told that I could expect to need a heart tx w/in 10 yrs... at that

time my EP team wanted me to consent to a NIH protocal which involved

taking some pretty nasty drugs the side effects I was all too

familiar w/after watching my youngest son go thru agressive chemo for

lymphoma... they were going to use one of the same drugs on me as an

anti-rejection medication (cyclosporine) as it was thought my body

was rejecting my heart because it had been invaded by a virus I had

contracted ... I would have also had to have gone thru a heart bx

every six months through out the protocal which didn't much appeal to

me after having had one while I was in hsp for original dx ... I

refused this protocal much to the dismay of absolutely every one of

my medical doctors ... as it's turned out thus far it would seem I

made the right choice as I've not gotten much worse... EF went up and

there is only slight enlargement of the upper chambers of my heart

now after 12 yrs ...w/in about 5 yrs of dx I was able to get my EF up

to 51% where it has stayed since... the only reason the doctors had

for this improvement was diet and exercise and the Grace of God

because they had absolutely no explanation of why my condition

improved as it did...I got my first ICD in '94 after the only

medication available that I responded to stopped working for me and

my second in '99... that was interesting as well... the medication

was Encainide(Enkaid) which was taken off the market shortly after I

was put on it due to high mortality rates ... but it was the only med

that I responded to so I continued to get it free from manufacturer

for over a year until I started having break thru arrhythmia ...I

also have Mitral Valve Prolapse w/mild reguritation, V-tach &

Bradycardia... and am subject to vagal episodes ... so.. if it's how

long can we last after being dx w/DCM... I'm living proof that life

does go on for at least 12 yrs ... this month ... that's right ...

this week is my 12th anniversary of being dx... just realized that :)

Happy anniversary to me!!! ... Boy... time sure does fly when you're

having fun :) ... 12 yrs ago tonight I was laying in Medical

Cntr " Critical Pathways " unit on the 24th anniversary of my youngest

son's b'day, not knowing what the heck happened to me all of a sudden

and thinking " gosh... so this is what growing old is all about,

huh? ... it's not so hot! " ... but life does go on after dx... so get

out and enjoy it... you've been given at least a second chance...

perhaps more ... take advantage of it!!! :)

JES :) in NJ

God Bless America

> Hi again. I've been feeling a bit mortal again. I am 37, and was

> diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> implanted. I'm wondering if ANY of you have been diagnosed with

> Dilated Cardiomyopathy, and have been living 5 or more years since

> diagnosis.

>

> - Rob

Please visit the Zapper homepage at

http://www.ZapLife.org

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forgot they have me on other drugs to for it but not sure what they are

stacie,18

Re: Death

Hi Rob... I was dx w/DCM in '90 at the age of 44 w/an EF of 42% and

told that I could expect to need a heart tx w/in 10 yrs... at that

time my EP team wanted me to consent to a NIH protocal which involved

taking some pretty nasty drugs the side effects I was all too

familiar w/after watching my youngest son go thru agressive chemo for

lymphoma... they were going to use one of the same drugs on me as an

anti-rejection medication (cyclosporine) as it was thought my body

was rejecting my heart because it had been invaded by a virus I had

contracted ... I would have also had to have gone thru a heart bx

every six months through out the protocal which didn't much appeal to

me after having had one while I was in hsp for original dx ... I

refused this protocal much to the dismay of absolutely every one of

my medical doctors ... as it's turned out thus far it would seem I

made the right choice as I've not gotten much worse... EF went up and

there is only slight enlargement of the upper chambers of my heart

now after 12 yrs ...w/in about 5 yrs of dx I was able to get my EF up

to 51% where it has stayed since... the only reason the doctors had

for this improvement was diet and exercise and the Grace of God

because they had absolutely no explanation of why my condition

improved as it did...I got my first ICD in '94 after the only

medication available that I responded to stopped working for me and

my second in '99... that was interesting as well... the medication

was Encainide(Enkaid) which was taken off the market shortly after I

was put on it due to high mortality rates ... but it was the only med

that I responded to so I continued to get it free from manufacturer

for over a year until I started having break thru arrhythmia ...I

also have Mitral Valve Prolapse w/mild reguritation, V-tach &

Bradycardia... and am subject to vagal episodes ... so.. if it's how

long can we last after being dx w/DCM... I'm living proof that life

does go on for at least 12 yrs ... this month ... that's right ...

this week is my 12th anniversary of being dx... just realized that :)

Happy anniversary to me!!! ... Boy... time sure does fly when you're

having fun :) ... 12 yrs ago tonight I was laying in Medical

Cntr " Critical Pathways " unit on the 24th anniversary of my youngest

son's b'day, not knowing what the heck happened to me all of a sudden

and thinking " gosh... so this is what growing old is all about,

huh? ... it's not so hot! " ... but life does go on after dx... so get

out and enjoy it... you've been given at least a second chance...

perhaps more ... take advantage of it!!! :)

JES :) in NJ

God Bless America

> Hi again. I've been feeling a bit mortal again. I am 37, and was

> diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> implanted. I'm wondering if ANY of you have been diagnosed with

> Dilated Cardiomyopathy, and have been living 5 or more years since

> diagnosis.

>

> - Rob

Please visit the Zapper homepage at

http://www.ZapLife.org

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Hello ita;

I belive that was Doug who was writing about dilated cardiomyopathy.Still Luv ya its ok.Good Luck Good Health and Good Heart. TURK

Re: Death

Pardon my ignorance again (excuse me Turk if you think I am stupid not everyone is as smart as you). What is DILATED CARDIOMYOPOTHY? I have cardiomyopothy idiomathic . I have not asked many question (that maybe why I am so STUPID about so many things i have been in denial for a long time. It was difficult for me to grab that this was happening to me. Now I am catching up with learning about what is happening, I was told by my MD that the good news was that I could last 5 years that was around three years ago and between my MUGA, Stress test and echo cardiogram, things have not changed in two years./ I think that is pretty good. Tell me if you have anything like that.Please visit the Zapper homepage athttp://www.ZapLife.org

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Hello Rob;

Welcome home buddy nice to have you in the grroup, I belive DOUG has dilated Cardiomyopathy. Keep on writing. Good Luck Good Health and Good Heart. TURK

----- Original Message -----

From: Natschural

Sent: Friday, March 22, 2002 1:02 PM

Subject: Death

Hi again. I've been feeling a bit mortal again. I am 37, and was diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was implanted. I'm wondering if ANY of you have been diagnosed with Dilated Cardiomyopathy, and have been living 5 or more years since diagnosis.- RobPlease visit the Zapper homepage athttp://www.ZapLife.org

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Stacie... Cyclo' is an old and very often used drug to treat

rejection... I wonder if one of the others they have you on is

Prednisone... also often used to reduce effects of rejection... the

amount of Cyclo' I was going to recieve was great... and for a long

time... and one side effect is to put on much weight... which went

against my grain as at the time I'd just taken 10 months to lose 80

lbs and didn't want to gain one ounce of it back :)... unfortunately,

since then I have anyway :( ... take care... and I do hope you're

rejection is stopped in it's tracks soon... so odd you'd have this

reaction on the second unit... go figure \o/ ... probably just one

more test of your strength :)... hang in there!

JES :) in NJ

God Bless America

> > Hi again. I've been feeling a bit mortal again. I am 37, and was

> > diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> > implanted. I'm wondering if ANY of you have been diagnosed with

> > Dilated Cardiomyopathy, and have been living 5 or more years since

> > diagnosis.

> >

> > - Rob

>

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

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yes i'm on Prednisone but i'm on that because of my lungs i have been on

that for about well since i was 8 and have not gained eight so far lost alot

thou by the way my dad has cardiomyopathy to not sure what type rob i got

you beat bye one year but hope we all can be these pesty old diseases i

know where they can find a cure for one if they wuold only listen i've did

research and foiund a treatment or possible a cure for one type of heart

disease maybe more who knows any ways just though i would tell you see my

best freind died in feb she had heart and lung disease and transplants

besides liver transplant so i know what so of the efects are

stacie,18

Re: Death

Stacie... Cyclo' is an old and very often used drug to treat

rejection... I wonder if one of the others they have you on is

Prednisone... also often used to reduce effects of rejection... the

amount of Cyclo' I was going to recieve was great... and for a long

time... and one side effect is to put on much weight... which went

against my grain as at the time I'd just taken 10 months to lose 80

lbs and didn't want to gain one ounce of it back :)... unfortunately,

since then I have anyway :( ... take care... and I do hope you're

rejection is stopped in it's tracks soon... so odd you'd have this

reaction on the second unit... go figure \o/ ... probably just one

more test of your strength :)... hang in there!

JES :) in NJ

God Bless America

> > Hi again. I've been feeling a bit mortal again. I am 37, and was

> > diagnosed with Dilated Cardiomyopathy in May of 99, and my ICD was

> > implanted. I'm wondering if ANY of you have been diagnosed with

> > Dilated Cardiomyopathy, and have been living 5 or more years since

> > diagnosis.

> >

> > - Rob >

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

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At 07:51 PM 3/23/02 -0800, rcsejt wrote:

i've did

research and foiund a treatment or possible a cure for one type of

heart

disease maybe more who knows any ways just though i would tell you

see my

best freind died in feb she had heart and lung disease and

transplants

besides liver transplant so i know what so of the efects are

stacie,18

Stacie,

Sounds like you are back in the groove again. I am real

curious. From your research, what did you discover that might

be a good treatment for heart disease as you mentioned in your

posting.

Sorry about your friend - always hard to loose someone you care

about. I lost my 92 year old dad back in January.

Say hello to your dad and tell him to take it easy.

Tom in PA

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in our body dna theres trillons of genes out of all theres genes theres three that make up the heart when the heart is damaged these genes are as well the reason are heart when we get sertan types of heart disease like cardiomyopathy are genes are damaged over time the virus that causes some types of cardiomyopathy attack not only the heart but the gene when we have a heart transplant we will get nomal genes in the heart then when they copiey there self we make more nomal genes over time are bodys stop copying the bad genes when in makes new ones if we can take this genes and replace it to the body instead of heart transplants a there will be less side effects and b it will last longer and the reason some people heart fuction goes back up is because the body can make undamaged genes by itself but over time these genes are out numbered so the body goes for the one thats high in number to copie thats why are fuction goes back down also in the time the gene make healthy genes not damaged ones the bodie can heal it's self in turns stronger heart but also there are two genes which help with heart rythm they over time are damaged when the heart is if we can correct the heart genes then maybe it will correct the heart rythm genes and teach itself the nomal way to work agian but there are possiblitys that this wont work but the likely hood of it not working is less then rejecting a new heart there are ways to get around the bnodies on mind we just have to try anf find that way there and also meds on the makit that they give people who are anima and people who need blood transplant that incourage the boidy to copey the healthy blood and the genes and cells in it everythang has dna and cells and blood and almost all diseases effact trhe dna and cells some more then other if we stop it in it's tracks then it's possible to thank in the near furture there can be a cure i know of other ways that could possibly cure somethang are body also makes a gene that tells how much oxgen in deffrent part of the body is need this gene can be as harmful if damaged as any other disease when the heart is hurt this genes dont alway know how much oxgen it needs thats why we get short of breathe and that you know when they found that cure for colon cancer i called a dna researcher and other cancer researchs and told thim where they could find it and what one it was and they did and now some collon cancers can be cured they did they work after that but i helped thim sorry this is so long

my dad says hi and hope everyones doing alright and no more shocks

stacie,18 still researching and hope to help some day p.s. hope i did not bore you to much

-----Original Message-----From: Greenholt [mailto:tgreenho@...]Sent: Sunday, March 24, 2002 10:34 AM ; Subject: RE: Re: DeathAt 07:51 PM 3/23/02 -0800, rcsejt wrote:

i've didresearch and foiund a treatment or possible a cure for one type of heartdisease maybe more who knows any ways just though i would tell you see mybest freind died in feb she had heart and lung disease and transplantsbesides liver transplant so i know what so of the efects arestacie,18Stacie,Sounds like you are back in the groove again. I am real curious. From your research, what did you discover that might be a good treatment for heart disease as you mentioned in your posting.Sorry about your friend - always hard to loose someone you care about. I lost my 92 year old dad back in January.Say hello to your dad and tell him to take it easy.Tom in PAPlease visit the Zapper homepage athttp://www.ZapLife.org

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  • 2 years later...

There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

It is one we used with my neices, who were 3 and 6 when my sister died. I

cry when I read it, but it helps explain things.

Amazon.com has it.

M.

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There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

It is one we used with my neices, who were 3 and 6 when my sister died. I

cry when I read it, but it helps explain things.

Amazon.com has it.

M.

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I'm thinking that Shriver has a book that either explains death or heaven.

I don't personally own it but if you go to Amazon, I'm sure they would have it

and the feedback people leave. She was talking about it one day on a talk show.

Re: Death

There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

It is one we used with my neices, who were 3 and 6 when my sister died. I

cry when I read it, but it helps explain things.

Amazon.com has it.

M.

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Share on other sites

I'm thinking that Shriver has a book that either explains death or heaven.

I don't personally own it but if you go to Amazon, I'm sure they would have it

and the feedback people leave. She was talking about it one day on a talk show.

Re: Death

There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

It is one we used with my neices, who were 3 and 6 when my sister died. I

cry when I read it, but it helps explain things.

Amazon.com has it.

M.

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Share on other sites

---

What worked for us, is not an option for you, as the funeral has

been, when my husbands father died, we were not sure how we were

going to tell Trent and be sure that he understood, we took him to

the funeral home for a viewing - he was able to see Pa in the

coffin, although he tried to 'boo' him - I think he probably

understood more than we realised.

A few years back, a girlfriend of mine died at home, she was a

single parent of a daughter with intellectual delay. Nikki about 14

yo at the time, tried to wake her Mum, by doing a lot of 'naughty'

things then went to a neighbours for help.

It is possible that Ben understands but is not wanting to face the

truth. Also be prepared for him to say something that may be in

appropriate - like my nephew did after my mother died - Marcus

with a smile on his face would tell people Nanna was dead and in the

ground.

All the best,

Jan, mother of Trent, 20 yo w/DS

In , " CINDY MATTERN " <cindymattern@m...>

wrote:

> Anyone know how to explain death to a 11 year old child. We have

tried explaining to Ben that Grandma is in heaven with Jesus, we

have tried explaining that she was really sick and didn't get better

and he still thinks that Grandma is coming for Thanksgiving.

> As she was buried in Pennsylvania and we are in Indiana only my

husband went for the funeral and I stayed home with the boys.

> Does anyone know any way to explain this to him so that he will

understand.

> Thanks,

> M.

>

>

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---

What worked for us, is not an option for you, as the funeral has

been, when my husbands father died, we were not sure how we were

going to tell Trent and be sure that he understood, we took him to

the funeral home for a viewing - he was able to see Pa in the

coffin, although he tried to 'boo' him - I think he probably

understood more than we realised.

A few years back, a girlfriend of mine died at home, she was a

single parent of a daughter with intellectual delay. Nikki about 14

yo at the time, tried to wake her Mum, by doing a lot of 'naughty'

things then went to a neighbours for help.

It is possible that Ben understands but is not wanting to face the

truth. Also be prepared for him to say something that may be in

appropriate - like my nephew did after my mother died - Marcus

with a smile on his face would tell people Nanna was dead and in the

ground.

All the best,

Jan, mother of Trent, 20 yo w/DS

In , " CINDY MATTERN " <cindymattern@m...>

wrote:

> Anyone know how to explain death to a 11 year old child. We have

tried explaining to Ben that Grandma is in heaven with Jesus, we

have tried explaining that she was really sick and didn't get better

and he still thinks that Grandma is coming for Thanksgiving.

> As she was buried in Pennsylvania and we are in Indiana only my

husband went for the funeral and I stayed home with the boys.

> Does anyone know any way to explain this to him so that he will

understand.

> Thanks,

> M.

>

>

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In a message dated 11/23/2004 5:53:07 PM Eastern Standard Time,

Michdock@... writes:

> There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

> It is one we used with my neices, who were 3 and 6 when my sister died. I

> cry when I read it, but it helps explain things.

Sesame Street had a great book about helping explain Mr. Hooper's death to

Big Bird. I think the Mr. Hooper actor had died in real life. I used it for

my children when my mom passed away, but I can't remember the title. I cried

when I read it, too. I think it may be out of circulation, but our library

still had a copy.

Donna

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In a message dated 11/23/2004 5:53:07 PM Eastern Standard Time,

Michdock@... writes:

> There is a book called Nana Upstairs, Nana Downstairs. by Tomie dePaola

> It is one we used with my neices, who were 3 and 6 when my sister died. I

> cry when I read it, but it helps explain things.

Sesame Street had a great book about helping explain Mr. Hooper's death to

Big Bird. I think the Mr. Hooper actor had died in real life. I used it for

my children when my mom passed away, but I can't remember the title. I cried

when I read it, too. I think it may be out of circulation, but our library

still had a copy.

Donna

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  • 1 year later...
Guest guest

I am sorry for your loss, Kim.

Raven

>

> My Uncle has passed away and I can see him now joined with his

Father,

> Mother, and youngest brother(my Dad). I'll miss him, the way he

told

> a story, his humor and love.

>

> Kim

>

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Guest guest

My condolences. I can see that he was fairly close to you and

you enjoyed your time with him.

- s

On 15 Jul 2006 Kim wrote:

> My Uncle has passed away and I can see him now joined with his Father,

> Mother, and youngest brother(my Dad). I'll miss him, the way he told

> a story, his humor and love.

>

> Kim

>

>

>

>

>

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Guest guest

Kim,

My condolences to you.

One of the things that I personally hate when a family member dies is

the way in which life is rearranged ever so slightly in a new and

unfamiliar way. There is always a hole that the missing person leaves

behind and even though it slowly closes up, healing like a wound, you

never completely get over it either.

It is good that you can envision him being in the afterlife. It gives

hope to those who have been left behind.

Tom

Administrator

My Uncle has passed away and I can see him now joined with his Father,

Mother, and youngest brother(my Dad). I'll miss him, the way he told

a story, his humor and love.

Kim

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