Question on genetics and blood pressure?

[Guest guest]

Hi,

Just had my first visit with my new Cardio, everything went well. Had

and echo and my EF is still at 35%, hasn't gotten better, but hasn't

gotten worse! (knock on wood) Slight leakage by my mitral and aortic

valves, but 'nothing to worry about' yet.

I have two questions though. The new Cardio wants to up my Coreg from

25/2xday to 50/2xday. She says that is my 'target dose' for my

weight, and that she likes to get her patients down to 80-90 Systolic.

My BP at the visit was 107/64. That seems a bit low to me, anyone

else run their BP that low? Do you have problems with fainting, etc?

My other question is that the heart center called me today and said

that they had made me an appointment with a geneticist there in

January. The cardio didn't say anything about the appointment during

my visit, but she did express some confusion on what was causing my

CM/low EF. No history of alcohol abuse, little family history of

heart disease, etc. My echo even showed that despite previous

diagnosis of DCM, I was in normal limits of heart size, and I have no

sign of hypertrophy either. She also mentioned that I have an unusual

aortic valve, only two leaflets instead of the normal 3. Could this

visit be to help determine what is causing my problems?

Thanks,

in NC

[Guest guest]

Hi, . Your history sounds just like mine. I have

non-ischemic idiopathic dilated cardiomyopathy. It

means the cardiologist doesn't know what caused it

because I have no coronary artery disease, no

blockages, nothing that could explain why the left

ventricle is enlarged.

One of the problems in CM is when the heart remodels.

The walls of the heart become thicker and less able to

pump blood. This leads to a lower ejection fraction.

Once the heart remodels, you can pretty much consider

the condition permanent.

My cardio wants the target systolic pressure to be

100. He doesn't want it lower than 90 and has me check

the pressure before meds. If the systolic is <90, I

postpone medications until it gets higher. Otherwise,

lightheadedness and fainting could happen. When I'm

that low, I have to be careful when I stand up from a

sitting position or I'll end up on the floor.

A two leaf valve versus a normal three leaf valve may

or may not be problematic. It depends on how well the

valve seals against backflow. Mitral valve prolapse

seems to be pretty common and it contributes to the

blood volume being pumped.

50mg twice a day of Coreg is the maximum recommended

dose for people who weigh over 187 pounds. It is

essential to watch for bradycardia when taking Coreg.

Bradycardia is a heart rate of less than 55 bpm.

Mike

--- dragontrog <sunny@...> wrote:

> Hi,

>

> Just had my first visit with my new Cardio,

> everything went well. Had

> and echo and my EF is still at 35%, hasn't gotten

> better, but hasn't

> gotten worse! (knock on wood) Slight leakage by my

> mitral and aortic

> valves, but 'nothing to worry about' yet.

>

> I have two questions though. The new Cardio wants

> to up my Coreg from

> 25/2xday to 50/2xday. She says that is my 'target

> dose' for my

> weight, and that she likes to get her patients down

> to 80-90 Systolic.

> My BP at the visit was 107/64. That seems a bit

> low to me, anyone

> else run their BP that low? Do you have problems

> with fainting, etc?

>

> My other question is that the heart center called me

> today and said

> that they had made me an appointment with a

> geneticist there in

> January. The cardio didn't say anything about the

> appointment during

> my visit, but she did express some confusion on what

> was causing my

> CM/low EF. No history of alcohol abuse, little

> family history of

> heart disease, etc. My echo even showed that

> despite previous

> diagnosis of DCM, I was in normal limits of heart

> size, and I have no

> sign of hypertrophy either. She also mentioned that

> I have an unusual

> aortic valve, only two leaflets instead of the

> normal 3. Could this

> visit be to help determine what is causing my

> problems?

>

> Thanks,

>

> in NC

>

>

________________________________________________________________________________\

____

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[Guest guest]

re: I really don't know what all my problems are still about. I have always have had an irregular heart beat. It wasn't until about ten years ago that things started to get a little weird. After an injury I put on sixty pounds from the meds I had been taking (some kind of steroid) I had a stroke. It took me two years to learn to walk and talk all over again. Three years later I come up with some kind of infection in my heart. All the termenology that you use is mostly forgein to me. pardon my ignorance. Now I have heart failure and when this acts up my heart speeds up. Vt first then fib. Then when the crises is over my heart slows down to as low as twenty five beats a minute. So for the last seven years I just kept getting weeker and weeker. I'm down one hundred and one pounds I can sit up and drink a cup of coffee now where before just getting up and pouring one tired me. I can walk down the store isles now take care of a small garden. And even sit up long

enough to attend sunday school. My story I make people beleive is a happy ending. But outside of my faith this zapper has assured me that I'm not going to have to many more of those thousand dollar taxi rides. Oh by the way it should be ex-fatboy tim

Have a burning question? Go to Answers and get answers from real people who know.

[Guest guest]

dragontrog wrote:

> Hi,

>

> Just had my first visit with my new Cardio, everything went well. Had

> and echo and my EF is still at 35%, hasn't gotten better, but hasn't

> gotten worse! (knock on wood) Slight leakage by my mitral and aortic

> valves, but 'nothing to worry about' yet.

>

> I have two questions though. The new Cardio wants to up my Coreg from

> 25/2xday to 50/2xday. She says that is my 'target dose' for my

> weight, and that she likes to get her patients down to 80-90 Systolic.

> My BP at the visit was 107/64. That seems a bit low to me, anyone

> else run their BP that low? Do you have problems with fainting, etc?

>

> My other question is that the heart center called me today and said

> that they had made me an appointment with a geneticist there in

> January. The cardio didn't say anything about the appointment during

> my visit, but she did express some confusion on what was causing my

> CM/low EF. No history of alcohol abuse, little family history of

> heart disease, etc. My echo even showed that despite previous

> diagnosis of DCM, I was in normal limits of heart size, and I have no

> sign of hypertrophy either. She also mentioned that I have an unusual

> aortic valve, only two leaflets instead of the normal 3. Could this

> visit be to help determine what is causing my problems?

>

> Thanks,

>

> in NC

>

>

Hi :

I also have Cardiomyopathy and have always run a low blood pressure. My

doctors have always been unable to determine exactly what caused my

Cardiomyopathy as I was diagnosed about 8 years ago when I had problems

with my right foot/ankle swelling in the hot weather, which usually goes

back down at night while you are sleeping, but mine would not. I could

not fit my foot into a regular shoe, and had to wear Teva sandals to

work for a while until they ran all of the tests and diagnosed me with "

Idiopathic Cardiomyopathy " . This means they don't really know what

caused me to develop this problem. They say it can be genetic, or maybe

at some time I got a virus that may have traveled to my heart...

I have been researching my mother's family (Leadbetter) since 1979, and

through the death certificates of my grandfather, and great grandfather,

as well as my mother's brother, and my sister , there does seem to be a

family history of heart disease. My uncle died on the operating table

while surgeons were trying to repair a hole in the septum of his heart,

however, he was an alcoholic, which obviously did not help his

condition. My sister has a slight heart murmer, but she does not drink,

and neither do I. When I was born, supposedly I was a " Blue Baby " , so,

I do believe very strongly that there is a strong genetic component to

my heart condition, and have given my cardiologist copies of the family

heart history with copies of the death certificates of the affected

individuals.

Like you, my ejection fraction was about 33% when I was first

diagnosed. At that time, I was told by my doctor that 1/3 of the

patients improve, 1/3 stay the same, and 1/3 get worse. For 8 years I

did fine on just 5mg of Lisinopril daily, then this past spring, I

started having palpitations that were lasting for hours. My new

cardiologist ran another echo and decided to add to my medications by

putting me on a Beta Blocker, Toprol XL 25mg. Since that time he has

slowly increased my dose to 100mg, and he indicated the dose he would

like to get me to would be 200mg, but due to my Asthma, he doubts he

will ever get me up to that high a dose.

Due to my low blood pressure, I can not go up on my Lisinopril dose as

they are afraid it may lower my blood pressure too much and then I'd

bottom out...Being worried about me suddenly going into a fatal episode

of palpitations, my cardiologist urged me to consider having a

defibrillator put in, which I did this August.

My ankles are still swollen by the end of the day, and my weight has

jumped by almost 18 pounds over the past year. I am now on a water pill

that I take once a day 5 days a week and twice a day on Wed & Sat. I am

supposed to walk 30 minutes each day, watch my salt intake, which I have

been doing right along. My main problems are fighting the weight gain

and the tiredness each afternoon at work from either lunchtime or 2-3 in

the afternoon, there are days when I literally fight to stay awake, and

have caught myself nodding off in front of my computer. Many nights I

come home and collapse on the sofa for a few hours I am so tired. That

is what bothers me, as I want to do more, but, I just do not have the

stamina that I feel I should have.

I think I have adjusted to wearing the defibrillator just fine, it is

there in my chest, it remains quiet, just the way I like it. However,

it gives me peace of mind knowing it is there should I need a good kick

in the pants! :-) I turned 50 this past May 1st, and when I asked my

doctor what my prognosis was, he referred me to a computer model that

basically indicated my lifespan with the defibrillator is another 16-17

years and without the defibrillator it would drop by 3 years.

I just try to live one day at a time, not worry too much about what is

to come, and do the best I can each and every day. I don't know how

much time I have, but, only God knows, and I just do the best I can to

be a good person, live by the Golden Rule, and not to worry about things

I have no control over. I don't take that computer indication too

seriously either, but, just knowing the " average " lets me think about

what is most important, and if I have a certain amount of time left to

live, what do I want to accomplish the most before my time is up? Maybe

it is a good wake up call and helps put things in perspective, so you

concentrate on what really matters...

Sending You Well Wishes,

Jody Champlin

Holden, MA

[Guest guest]

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

From: " Hiranuma " <

> I have non-ischemic idiopathic

> dilated cardiomyopathy.

:

Congratulations! You just won the Cardiology Spelling Bee.

From California where instead of ideopathic, I'm described as a pathetic

idiot.

Bill

[Guest guest]

Bill, You are something all right! If my traitorous heart does not eventually kill me, one of your jokes will! I have trouble catching my breath after laughing so hard.

Jim E

Re: Question on genetics and blood pressure?

----- Original Message ----- From: " Hiranuma" <> I have non-ischemic idiopathic> dilated cardiomyopathy.:Congratulations! You just won the Cardiology Spelling Bee.From California where instead of ideopathic, I'm described as a pathetic idiot.Bill

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.2/560 - Release Date: 11/30/2006

[Guest guest]

;

I have familial cardiomyopathy (dilated). My father, all of his 9 siblings and his father all had it - seems I am the only one in my generation.... I was 40 when it was discovered. I had an EF of 43. I was put on Coreg up to the dose of 25mg 2x per day. My BP was kept at 90/60 with the medication. I have since lost 85 pounds and began developing symptoms of dizziness... My dose of Coreg has been cut to 12.5mg 2x per day, and the lisinopril was cut from 10mg to 5mg per day. My BP is still about the same, although when I get up too fast -- I am dizzy! So I have to move carefully! Yeh right - a 48 year old mother of two teen agers!

I beleive Coreg is a miracle drug, as does my Doc who is head of heart transplant at UCSF-Stanford. My EF improved from 43 to 60 (normal) within 18 mos on the Coreg!

Good luck to you.

~guin

[Guest guest]

Jody, I don't know what's going on still, even after ten years. I do know that my problems were caused by a virus. It really doesn't matter they only gave me two to ten years to enjoy a happy healthy life. And that is just what I'm gonna do. I've felt so bad for so long that little bit better I feel now is almost a peace of heaven now. And don't get me wrong, every thing is not all OK. It' like all hell has broke loose. My wife could not take it any more and my kids are picking up a pretty heavy burden trying to take care of me. But still I have not felt this good in ten years. Genetics no. But I believe the doctors will eventually figure it out. It took the a long time for me and it's still not over. I'm at least in my mind and with my faith am going to beat those awful odds. So at age forty eight years of age, I'm going to live to eighty. Wish you all the luck in the world and may God bless. TimJody Champlin <tribarkin@...> wrote:

Want to start your own business? Learn how on Small Business.

[Guest guest]

Good for you Tim! I am 48 years old and down 85 pounds -- I know what you mean I am going to live until I am 80! (even though my Dad died at 63). Yup, mine is genetic - familial cardiomyopathy, My dad, his 9 siblings and their dad all died of it -- I am the only one diagnosed with in my generation -- go figure.... They found it when I was 40 -- but technology is sooo much better now.

Keep up the good work.

~guin

Re: Question on genetics and blood pressure?

re:

I really don't know what all my problems are still about. I have always have had an irregular heart beat. It wasn't until about ten years ago that things started to get a little weird. After an injury I put on sixty pounds from the meds I had been taking (some kind of steroid) I had a stroke. It took me two years to learn to walk and talk all over again. Three years later I come up with some kind of infection in my heart. All the termenology that you use is mostly forgein to me. pardon my ignorance. Now I have heart failure and when this acts up my heart speeds up. Vt first then fib. Then when the crises is over my heart slows down to as low as twenty five beats a minute. So for the last seven years I just kept getting weeker and weeker. I'm down one hundred and one pounds I can sit up and drink a cup of coffee now where before just getting up and pouring one tired me. I can walk down the store isles now take care of a small garden. And eve n sit up long enough to attend sunday school. My story I make people beleive is a happy ending. But outside of my faith this zapper has assured me that I'm not going to have to many more of those thousand dollar taxi rides. Oh by the way it should be ex-fatboy

tim

Have a burning question? Go to Answers and get answers from real people who know.

[Guest guest]

Glafd you liked it. It's my therapy.b.

Bill

Re: Question on genetics and blood pressure?

----- Original Message ----- From: " Hiranuma" <> I have non-ischemic idiopathic> dilated cardiomyopathy.:Congratulations! You just won the Cardiology Spelling Bee.From California where instead of ideopathic, I'm described as a pathetic idiot.Bill

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.2/560 - Release Date: 11/30/2006

[Guest guest]

Thanks for all the responses! Guess I'll find out more when I go see

the Doc. Glad to see everybody doing as well as can be expected, much

better than the alternative, eh? My case is kinda odd in that if I

hadn't had the VT/VF symptoms (passing out, etc.), I would never even

have known I had CM, no CM symptoms so far...knock on wood.

Best of Luck to everyone!

[Guest guest]

wrote:

> Jody,

> I don't know what's going on still, even after ten years. I do know

> that my problems were caused by a virus. It really doesn't matter they

> only gave me two to ten years to enjoy a happy healthy life. And that

> is just what I'm gonna do. I've felt so bad for so long that little

> bit better I feel now is almost a peace of heaven now. And don't get

> me wrong, every thing is not all OK. It' like all hell has broke

> loose. My wife could not take it any more and my kids are picking up a

> pretty heavy burden trying to take care of me. But still I have not

> felt this good in ten years. Genetics no. But I believe the doctors

> will eventually figure it out. It took the a long time for me and it's

> still not over. I'm at least in my mind and with my faith am going to

> beat those awful odds. So at age forty eight years of age, I'm going

> to live to eighty. Wish you all the luck in the world and may God bless.

> Tim

Hi Tim:

You sound like you are feeling pretty bad. Can you describe for me what

is going on, what you feel like, and what you are able to do and what

the doctors are doing for you? I can understand what a shock it must

have been for you having your wife leave you probably when you needed

her to stand by you the most. (In sickness and in health, didn't we all

promise to do that?) Right now I can't imagine going through this

alone. My husband is a very sweet man, and he does do his best to take

care of me in the little things he does for me every day.

Up until a few months ago, I was getting up at 5:30 and getting his

breakfast for him as he leaves early to drive an hour and 15 minutes to

work every day. Then I started with this " tiredness " and lately I have

just been sleeping later and not getting up like I used to. Well, he is

kind enough to make the coffee and put some toast in for both of us, and

he makes sure I'm up and awake with my coffee and something to eat

before he leaves every morning. If it were not for him, I'd probably

sleep late every morning! I never have been a morning person. It seems

that when the alarm goes off, that is when I am in my deepest sleep, and

my body just doesn't want to wake up. I don't quite understand it, but,

some mornings I feel like I could sleep forever...

I do get my behind out of bed by 7:00, jump in the shower, get my

clothes ironed, dress, feed my 3 Shelties and get out by 8:00 for my 20

minute ride to work by 8:30. I work from 8:30 - 5:00 and come home very

tired. I usually wait for my husband to get home before doing anything

about dinner as he doesn't always want to eat what I may be thinking of

having, and it is just easier to wait for him to actually be here before

either over cooking something or making the " wrong " thing.

I turned 50 this year and was first diagnosed about 8 years ago...I did

know of someone else with this disease, and the person was the subject

of a book and a Hallmark Hall of Fame Movie during the 1970's called,

" Thursday's Child " by Poole. I never forgot the story about

Sam Poole, a young man from Portland, ME as told by his mother. Sam was

a young man, in high school when he developed a horrible cough and other

symptoms of heart problems, and when his mom took him in to be checked

out, they discovered he had Cardiomyopathy. I can't remember how long

it took for Sam's health to spiral downward, but, he eventually got very

ill and was on death's door when he got a heart transplant. He lived

several years after the transplant, but eventually died of kidney

failure. I never forgot his story, and I've pulled out my yellowing

paperback verson of the book several times over the past few years. I

wrote to the Hallmark company asking why they had never put Thursday's

Child out for the public to purchase on DVD or Video Tape. They wrote

back explaining that they did not own the rights to that particular

movie which is why it is not available. I thought it was a wonderfully

done movie and I'd love to see it again if that were possible.

I also work with someone with a more severe heart problem than I have or

at least she is more affected right now than I am, and she is still able

to come to work each day and puts in a full day. I guess I look to her

as my mentor, as she just plugs along and does not let much get in her

way. I guess I figure if Gail can do it, than so can I! Is your glass

half full or half empty? I guess it is just how you choose to look at

life and how you handle problems as they come up. We both have

defibrillators, she got hers about a year or so before I got mine. She

has been the first to do everything, so I see how she handles things and

so far it has been no big deal, so I just follow her lead and we are

both doing ok for now...

I am a fighter by nature, and my will to live is very strong. I do know

what is in my background and I probably won't live until 98 the way my

father's father did, but will probably be more like my mother's father

and her grandfather as they are the ones who both died of heart

problems, within 2 years of each other. Right now, I am able to do what

I need to do to get through my work day without too much trouble. Yes,

I do feel very tired by the time I get home each night, but I can still

function. Whether or not I'll be able to work til I am 65, who knows?

I just take one day at a time, and do the best I can each and every

day. I can't worry about what tomorrow brings or how long I will be

able to function at this capacity as that worrying won't help me, so why

bother wasting good energy on worrying? I have little enough energy, so

I have to conserve it for important things.

I am of the belief use it or lose it, so, I try to keep on going and

stay as active as I can. Because once you let go of something, you

never get it back like it was before. I see this in my severely ill

next door neighbor who has fought diabetes for years and now is in a

real downward slide, and may not be alive much longer. I go over and

help her out as often as I can, as she is for all intents and purposes

in bed more than she is out of it. So, watching what she is going

through makes me more determined than ever that I am going to be as

active as I can be and not let this disease rule my life. So far I have

been lucky enough to not let my heart disease affect me too much, but,

I've had days when I've felt pretty tired and just like a wet dishrag,

more during the hot humid weather than now that it has finally gotten

cold here in the northeast.

I educate myself as much as I can, and I have bought several books about

heart disease, and I read as much as I can. I am having problems with

my weight, which has steadily increased over the past year, despite my

eating habits really haven't changed that much. I do try to be careful

about what I eat, and I watch my salt intake very closely. I figure if

I can help myself in the little things like this, and trying to at least

walk 30 minutes each day 2-3 times a week and work up to daily, I am

doing what I can to help myself. As long as I keep trying to help

myself I have nothing to complain about. If I give up, then I'm in

trouble and I know that, so I keep finding ways to push myself to

continue and that is what works for me...

You see, my mother committed suicide when I was 5 years old. Her death

just tore my family apart, and things have never been right since then

between my 2 brothers, my sister and myself. Our dad passed in 1991.

Dad remarried 9 months after my mom died, and that was the worst thing

he could have done as my step mother was not the person we needed and

she did everything she could to eradicate any memories we had of our

past life. She threw away family photos, made my dad sell the house we

had lived in my whole life. Both my brothers moved out and went to

college, my sister went to live with a friend to finish out her

highschool years, which left me home alone with my parents. As a

result, I grew estranged from my siblings and have spent the past 30

years trying to reclaim what should have been mine, a relationship with

my brothers that really will never be...Seeing what suicide does to a

family just made me want to live all the more, and it is a fierce desire

to live. So I take that burning desire and put it to work every day and

get as much out of it as I can before I collapse in bed every night, and

drag my tired body out of bed every morning.

I don't know anything else but to give it my best, and when my best is

no longer enough, well, I guess I'll have to ask someone else for help

to get me through the day. I have no one but my husband and myself to

rely on, as we were not able to have any children. You are very lucky

to have children that are willing and able to help you. I see how

committed my next door neighbor's husband is to her care, and I swear he

is a saint! It is not easy for our loved ones to see us constantly

tired or not feeling well, and not everyone is able to deal with it.

Believe me, I'm not making excuses for your wife, I do not condone that

sort of thing as I do believe what I said and what I promised to my

husband on our wedding day almost 30 years ago. The older we get the

harder that commitment becomes, especially when one of you is sick and

the prognosis is not good.

It takes a special kind of person to be able to look beyond the obvious

and still come out with a positive outlook or be willing to go that

extra mile to try to keep you going. Part of it is just sheer

stubborness as the other person just does not want to let you go and

that is what keeps them trying to keep you going. I see this in Dusty

and Joanne next door. He won't take no for an answer and he is the sole

reason she is still alive, because he just won't let her die. She still

feels that she has too much left undone and I really think she wants to

live, but she is very tired of the fight, but she keeps going for

Dusty's sake.

I guess the answer is that we all have to help each other in our various

times of need and that is what gets us all though our trials and hard

times. They say that God never gives us more than we can handle, but,

I've often wondered about the wisdom in that expression...I don't know

how much help I've been to you, but I hope I've done some good if just

letting you know that you are not alone, we are all in there with you.

We all travel our own journeys, and we stop along the way to help pick

up someone who is faltering or who needs a word of encouragement.

Just don't forget to give your kids a hug and a kiss each and everyday

and remember to tell them that you love them. That is something I wish

I had heard more of when I was growing up. I vowed if I were ever lucky

enough to have children that they would know that their mother loved

them! I know that my 3 Shelties are loved and they love us, so that

will have to do! I don't know what I would do without their love for sure!

Sending you our warmest Sheltie Hugs,

Jody

>

> *//*

>

>

>

[Guest guest]

Jody, As I read every body's stories and concerns. I know I am not alone. And not to put anything out of place or change any the contents of all you people do to encourage each other, I want everybody to know that I stand impressed with their concern. But you stand out and ask some of the same questions that every else outside of this circle ask. So first of all please give the same heart to my wife that you gave me and the rest of the group. I don't blame my wife, it has been a hard time for her also. She has a terminal illness of her own, Lupus. And I have sacrificed a lot of my health to minister to her needs. It is bad enough for one marriage partner to be ill and all the heart ache that goes with it, but when both are going through sever illnesses it stresses things to snapping. I don't want to go on much more with this but in closing, my wife is not the mother of my children. And my ex wife has been there through those last nasty days I spent in

the hospital. I'll get back to this in a short. my wife thought I just wanted die and could not except my sacrifice for her. It's had trying to take care of somebody when you don't have the energy to even walk up three steps. And about the time she started getting better my grandson at 18 months old was found to have cancer. you know the heart only bleeds one color and that is love. And my daughter needed all the hugs that where available. So my health was neglected once again. Don't think I'm crazy or making this all up people have to be there to understand. Dylan's chances were slim to none. And for seven months we did not have a clue or even a hope of seeing one more day of seeing him smile. Kids are a blessing from God all right but they can shore ripe an injured heart wide open. I don't care what my wife says if I lost my grandson I just couldn't lose my daughter too. The boy is now three years cancer free, and I'm twenty years older. Good Lord what have I done?

Regrets no I would do it again if I had to. Now to my point, I got to the point that just getting up and pouring a cup of coffee tired me to the point of total exhaustion. Shure I kept a small Garden. The tax on me was more than most would do. I even mowed the yard, fixed my car, and done repairs on my older trailer. I would work twenty minutes and sit for half an hour. what would take my son one hour to mow would take me sometime a whole day. Give up? never. This is the big war with my wife and I, You need to get things taken care of. Everybody in this group knows that things just don't seem to take care of it self in our time frame. I was going through the process. Seven years ago when I had my infection in my heart, my wife left me. This is the time that my health just slipped away. I developed diabetes, and soon put on 130 plus pounds. I was then showen a picture of a golfball sized mass on my left kidney. And all I heard from the little

woman was that I was gonna die. Being sick is sometimes a cruel joke any ways. And I wasn't dead yet. That child with the cancer pulled me together. And I'll never forget those eyes, he never knew what was going to happen to him. Nor do I think he could understand the hell he was going to go through. But he just kept going on. Most days if you would close your eyes and listen to him play you could not even tell he was sick. He never gave up! he only cried, and if the innocence of a child can could pull him through. That same naive innocence was gonna pull me through. I've had a lot of support though, it has lust come from some unusual places. My ex wife was one. On the of my last trips to the hospital this woman that has not talked to me since I received custody of my children, took me to the er room and stood by me until they deemed me stable. She held my hand and encouraged me to keep fighting for almost six hours. It's kinda funny, I didn't know

any of this until after the fact. I mean, I had called my daughter when I had come around and told her that I had one Hell of a night mare, I even woke in a cold sweat. I told her that in the dream I had ask her mom to marry me again. Look I was shaking when I was on the phone with her when she said, " dad that wasn't a dream." look I'm running on a bit, but it seams that when door shuts another opens, when encouragement wanes strenght comes from the innocence of a child, and when a story needs told someone asks. Bless you and your husband for your concern. And thanks for asking. Now please I brought up some old war wound and I don't think I have the courage to proof this so take the time to fill in the blanks.Tim minus 101 poundsJody Champlin <tribarkin@...> wrote: wrote:> Jody,> I don't know what's going on still, even after ten years. I do know > that my problems were caused by a virus. It really doesn't matter they > only gave me two to ten years to enjoy a happy healthy life. And that > is just what I'm gonna do. I've felt so bad for so long that little > bit better I feel now is almost a peace of heaven now. And don't get > me wrong, every thing is not all OK. It' like all hell has broke > loose. My wife could not take it any more and my kids are picking up a > pretty heavy burden trying to take care of me. But still I have not > felt this

good in ten years. Genetics no. But I believe the doctors > will eventually figure it out. It took the a long time for me and it's > still not over. I'm at least in my mind and with my faith am going to > beat those awful odds. So at age forty eight years of age, I'm going > to live to eighty. Wish you all the luck in the world and may God bless.> TimHi Tim:You sound like you are feeling pretty bad. Can you describe for me what is going on, what you feel like, and what you are able to do and what the doctors are doing for you? I can understand what a shock it must have been for you having your wife leave you probably when you needed her to stand by you the most. (In sickness and in health, didn't we all promise to do that?) Right now I can't imagine going through this alone. My husband is a very sweet man, and he does do his best to take care of me in the little things he does for me every day.

Up until a few months ago, I was getting up at 5:30 and getting his breakfast for him as he leaves early to drive an hour and 15 minutes to work every day. Then I started with this "tiredness" and lately I have just been sleeping later and not getting up like I used to. Well, he is kind enough to make the coffee and put some toast in for both of us, and he makes sure I'm up and awake with my coffee and something to eat before he leaves every morning. If it were not for him, I'd probably sleep late every morning! I never have been a morning person. It seems that when the alarm goes off, that is when I am in my deepest sleep, and my body just doesn't want to wake up. I don't quite understand it, but, some mornings I feel like I could sleep forever...I do get my behind out of bed by 7:00, jump in the shower, get my clothes ironed, dress, feed my 3 Shelties and get out by 8:00 for my 20 minute ride to work by

8:30. I work from 8:30 - 5:00 and come home very tired. I usually wait for my husband to get home before doing anything about dinner as he doesn't always want to eat what I may be thinking of having, and it is just easier to wait for him to actually be here before either over cooking something or making the "wrong" thing.I turned 50 this year and was first diagnosed about 8 years ago...I did know of someone else with this disease, and the person was the subject of a book and a Hallmark Hall of Fame Movie during the 1970's called, "Thursday's Child" by Poole. I never forgot the story about Sam Poole, a young man from Portland, ME as told by his mother. Sam was a young man, in high school when he developed a horrible cough and other symptoms of heart problems, and when his mom took him in to be checked out, they discovered he had Cardiomyopathy. I can't remember how long it took for Sam's health to spiral

downward, but, he eventually got very ill and was on death's door when he got a heart transplant. He lived several years after the transplant, but eventually died of kidney failure. I never forgot his story, and I've pulled out my yellowing paperback verson of the book several times over the past few years. I wrote to the Hallmark company asking why they had never put Thursday's Child out for the public to purchase on DVD or Video Tape. They wrote back explaining that they did not own the rights to that particular movie which is why it is not available. I thought it was a wonderfully done movie and I'd love to see it again if that were possible. I also work with someone with a more severe heart problem than I have or at least she is more affected right now than I am, and she is still able to come to work each day and puts in a full day. I guess I look to her as my mentor, as she just plugs along and does not let much

get in her way. I guess I figure if Gail can do it, than so can I! Is your glass half full or half empty? I guess it is just how you choose to look at life and how you handle problems as they come up. We both have defibrillators, she got hers about a year or so before I got mine. She has been the first to do everything, so I see how she handles things and so far it has been no big deal, so I just follow her lead and we are both doing ok for now...I am a fighter by nature, and my will to live is very strong. I do know what is in my background and I probably won't live until 98 the way my father's father did, but will probably be more like my mother's father and her grandfather as they are the ones who both died of heart problems, within 2 years of each other. Right now, I am able to do what I need to do to get through my work day without too much trouble. Yes, I do feel very tired by the time I get home each night,

but I can still function. Whether or not I'll be able to work til I am 65, who knows? I just take one day at a time, and do the best I can each and every day. I can't worry about what tomorrow brings or how long I will be able to function at this capacity as that worrying won't help me, so why bother wasting good energy on worrying? I have little enough energy, so I have to conserve it for important things. I am of the belief use it or lose it, so, I try to keep on going and stay as active as I can. Because once you let go of something, you never get it back like it was before. I see this in my severely ill next door neighbor who has fought diabetes for years and now is in a real downward slide, and may not be alive much longer. I go over and help her out as often as I can, as she is for all intents and purposes in bed more than she is out of it. So, watching what she is going through makes me more determined than

ever that I am going to be as active as I can be and not let this disease rule my life. So far I have been lucky enough to not let my heart disease affect me too much, but, I've had days when I've felt pretty tired and just like a wet dishrag, more during the hot humid weather than now that it has finally gotten cold here in the northeast.I educate myself as much as I can, and I have bought several books about heart disease, and I read as much as I can. I am having problems with my weight, which has steadily increased over the past year, despite my eating habits really haven't changed that much. I do try to be carefulabout what I eat, and I watch my salt intake very closely. I figure if I can help myself in the little things like this, and trying to at least walk 30 minutes each day 2-3 times a week and work up to daily, I am doing what I can to help myself. As long as I keep trying to help myself I have nothing

to complain about. If I give up, then I'm in trouble and I know that, so I keep finding ways to push myself to continue and that is what works for me...You see, my mother committed suicide when I was 5 years old. Her death just tore my family apart, and things have never been right since then between my 2 brothers, my sister and myself. Our dad passed in 1991. Dad remarried 9 months after my mom died, and that was the worst thing he could have done as my step mother was not the person we needed and she did everything she could to eradicate any memories we had of our past life. She threw away family photos, made my dad sell the house we had lived in my whole life. Both my brothers moved out and went to college, my sister went to live with a friend to finish out her highschool years, which left me home alone with my parents. As a result, I grew estranged from my siblings and have spent the past 30 years trying to

reclaim what should have been mine, a relationship with my brothers that really will never be...Seeing what suicide does to a family just made me want to live all the more, and it is a fierce desire to live. So I take that burning desire and put it to work every day and get as much out of it as I can before I collapse in bed every night, and drag my tired body out of bed every morning.I don't know anything else but to give it my best, and when my best is no longer enough, well, I guess I'll have to ask someone else for help to get me through the day. I have no one but my husband and myself to rely on, as we were not able to have any children. You are very lucky to have children that are willing and able to help you. I see how committed my next door neighbor's husband is to her care, and I swear he is a saint! It is not easy for our loved ones to see us constantly tired or not feeling well, and not everyone is able to

deal with it. Believe me, I'm not making excuses for your wife, I do not condone that sort of thing as I do believe what I said and what I promised to my husband on our wedding day almost 30 years ago. The older we get the harder that commitment becomes, especially when one of you is sick and the prognosis is not good.It takes a special kind of person to be able to look beyond the obvious and still come out with a positive outlook or be willing to go that extra mile to try to keep you going. Part of it is just sheer stubborness as the other person just does not want to let you go and that is what keeps them trying to keep you going. I see this in Dusty and Joanne next door. He won't take no for an answer and he is the sole reason she is still alive, because he just won't let her die. She still feels that she has too much left undone and I really think she wants to live, but she is very tired of the fight, but she

keeps going for Dusty's sake.I guess the answer is that we all have to help each other in our various times of need and that is what gets us all though our trials and hard times. They say that God never gives us more than we can handle, but, I've often wondered about the wisdom in that expression...I don't know how much help I've been to you, but I hope I've done some good if just letting you know that you are not alone, we are all in there with you. We all travel our own journeys, and we stop along the way to help pick up someone who is faltering or who needs a word of encouragement. Just don't forget to give your kids a hug and a kiss each and everyday and remember to tell them that you love them. That is something I wish I had heard more of when I was growing up. I vowed if I were ever lucky enough to have children that they would know that their mother loved them! I know that my 3 Shelties are loved

and they love us, so that will have to do! I don't know what I would do without their love for sure!Sending you our warmest Sheltie Hugs,Jody>> *//*>>>

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[Guest guest]

Jeanette,

If your husband has

half of a heart and you have a whole heart that you are sharing then together

you have one and a half hearts.

If you divide one

and a half by two you each have seventy-five percent of a heart and should live

life that way.

If you are giving

all your love and all that it entails there isn’t anymore that you can give.

Is the glass half

full or half empty? With your love

I would think the glass is more than half full.

I think I am afraid

to ask the doctors what percent my heart is compared to what it could be. I know it isn’t as strong as it used to

be. Actually my whole body is

getting older and weaker by the day.

I exercise but that doesn’t seem to be enough to stay ahead of nature.

We purchased the

house I lived in when I was a teenager and the wood ladders that I carried

around back then came with the house.

I didn’t know that wood ladders could gain weight just hanging in the

garage but a couple of weeks ago when I cleaned the gutters those darn things

were a lot heavier than I remember as a teen.

When friends ask

how I am doing I frequently answer that I got up today and for that I am

thankful.

Merry Christmas

Joe Schmidt

God Loves Us All

-----Original

Message-----

From:

[mailto: ]On Behalf Of Jeanette

Lund

Sent: Monday, December 11, 2006

9:54 PM

Subject: Re: Question on

genetics and blood pressure?

To Zaplist,

Christmas is a trying time of year for anyone. My

husband has a pace/defib and he is very depressed. We

have only been married for one year and I really can

see an improvement in his health. He doesn't seem to

know how to enjoy life. What can you give a man who

only has half a working heart? All I can offer is my

love and charish our time together.

Jeanette

--- <fatboytimcollins >

wrote: