RE: irregular heartbeats

[Guest guest]

HI Joanne,

You are not alone in the cardiac arean. Our daughter KRistne was born with a

PDA< ASD, VSD, anololous innominate, and anomolous subclavian. She also had

sever apnea and bradycardia (heart rates down below 10) since the age of 9 week

s(long before her corrective heart surgery, Her first cardiac pacer was placed

when she was 3. She still has other arrhythmias as well as the bradycardia.

She is on her second generator and one of her two leads is nonfunctional. I

firmly believe that the arrhythmias and primary bradycardia are related to

dysautonomia that is a part of her underlying mitochondrial disease.

bionicgirl_bionic crookpj@...> wrote: Carmen,

I don't think the pausing is necessarily dangerous. I was born with a

heart defect. So the jury is still out on if the reason I need this

pacer is related to that or to the suspected mito or a combination. I

suffered from bradycardia (slow heart beat) It was once documented

that my heart was beating only 18 beats per minute. This was after I

had open heart surgery and they attributed it to the electrical system

being damaged during surgery. Or scar tissue. I think there must be

some kind of Mito connection, but that is just my opinion. I think

that if you get regular check ups they should be able to catch

anything before it ever becomes too serious. I am such an unusual

case. My cardiologist once scolded me about talking to other people

in the waiting room. He said that I was scaring them. And all I did

was tell them that I was on pacer #5. I have never heard of someone

else with the heart problems that I have. I know it is

uncomfortable. And I am sorry that you have to put up with this.

Joanne

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

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physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

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[Guest guest]

Wow Joanne,

That sounds so similar to me. Do you have a diagnoisis as to what form of

mito she has? I would be interested to know. I was born with an ASD. It

was very large. I pretty much had a 3 chamber heart. My heart defect was

not even discovered until I was 5. My bradycardia didn't develop until I

was about 22. Then I went for a year without a diagnosis. I remember going

to sleep at night and the last thought I would have was " If I fall asleep, I

will die. " I would say a prayer and ask God to watch over me and then fall

asleep. Oftentimes I would wake up gasping for air. I did this one night

and it was so bad I ended up in the ER. I was lucky that night. There

wasn't a cardiologist on call. The Pulmonologist who was covering said that

everything looked fine, but because he wasn't a cardiologist that he would

be more comfortable observing me overnight. That is when they started to

take me seriously. I woke up after finally falling asleep. I don't even

remember gasping for air that time. A few seconds later a nurse came

rushing into the room in a panic. They had finally documented my extreme

bradycardia! The last few years I have also developed severe sleep apnea.

When I have a crash it also happens to me when I am awake.

My grandaughter was born with hypoplastic right heart and pulmonary atresia.

She died a day before her 3rd birthday of heart failure. She was waiting

for a transplant, but one didn't come in time. She had cyclic vomiting all

of her life. When they did her autopsey, they found mitochondrial

proliferation. I sincerely believe that there is a mito connection. There

are just too many strange things happening in one family for them to be just

weird coincidences. But I have not found anyone who is interested enough to

take a closer look.

Joanne in California

Re: irregular heartbeats

HI Joanne,

You are not alone in the cardiac arean. Our daughter KRistne was born with

a PDA< ASD, VSD, anololous innominate, and anomolous subclavian. She also

had sever apnea and bradycardia (heart rates down below 10) since the age of

9 week s(long before her corrective heart surgery, Her first cardiac pacer

was placed when she was 3. She still has other arrhythmias as well as the

bradycardia. She is on her second generator and one of her two leads is

nonfunctional. I firmly believe that the arrhythmias and primary

bradycardia are related to dysautonomia that is a part of her underlying

mitochondrial disease.

bionicgirl_bionic crookpj@...> wrote: Carmen,

I don't think the pausing is necessarily dangerous. I was born with a

heart defect. So the jury is still out on if the reason I need this pacer

is related to that or to the suspected mito or a combination. I suffered

from bradycardia (slow heart beat) It was once documented that my heart

was beating only 18 beats per minute. This was after I had open heart

surgery and they attributed it to the electrical system being damaged

during surgery. Or scar tissue. I think there must be some kind of Mito

connection, but that is just my opinion. I think that if you get regular

check ups they should be able to catch anything before it ever becomes too

serious. I am such an unusual case. My cardiologist once scolded me about

talking to other people in the waiting room. He said that I was scaring

them. And all I did was tell them that I was on pacer #5. I have never

heard of someone else with the heart problems that I have. I know it is

uncomfortable. And I am sorry that you have to put up with this.

Joanne

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Hi Joanne,

You will not like my answer. Between my two girls they have identified defects

in Complex I, III, IV and ANT. Every skin and/or muscle biopsy comes back with

another abnormality. The concensus of Drs. Whiteman, Cohen and Shoffner is that

their actual " problem " is likely in the membrance, thus almost every function is

malfunctioning. Technology can't yet evaluate the function or abnormalities in

hte mitochondriual membrane. So, we treat what we can based upon scientific

knowledge today.

My girls also both have severe apnea while asleep and also while awake.

Her service dog, Brooklyn, bumps her when she starts to breathe too shallowly to

remind her to take a breath when awake. Both girls are noninvasively

ventilated when asleep. Kristne is also ventilated 1 1/2 - 2 hours each

afternoon to " blow off " excessive CO2.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

That doesn't really pin it down does it? Who did they go to to get the dx?

I also have hormone abnormalites. I have thyroid hormone resistence. Sounds

like you are doing pretty much what I am doing. Treating the symptoms.

However it would be nice to have an actual dx. I want to go see dr.

Schoffner, but my HMO is dragging their feet.

Joanne

RE: irregular heartbeats

Hi Joanne,

You will not like my answer. Between my two girls they have identified

defects in Complex I, III, IV and ANT. Every skin and/or muscle biopsy

comes back with another abnormality. The concensus of Drs. Whiteman, Cohen

and Shoffner is that their actual " problem " is likely in the membrance, thus

almost every function is malfunctioning. Technology can't yet evaluate the

function or abnormalities in hte mitochondriual membrane. So, we treat what

we can based upon scientific knowledge today.

My girls also both have severe apnea while asleep and also while

awake. Her service dog, Brooklyn, bumps her when she starts to breathe too

shallowly to remind her to take a breath when awake. Both girls are

noninvasively ventilated when asleep. Kristne is also ventilated 1 1/2 - 2

hours each afternoon to " blow off " excessive CO2.

Joanne Kocourek (mom to , lies, and ) visit us at:

http://www.caringbridge.org/il/annakris