Matt will have biopsy

April 27, 2005

Hey all, i have to keep this brief, we decide for the 2nd biopsy for

Matt as he is strong enough to go through this at this time, we

decide that we will wait until after June 13, which will be his

ninth birthday. We told them just to give Matt a day or two after

his birthday to bring him in. Through long debate over this, and

all your support, the final decision was made, two days ago, as ive

been battle a cold which keeps going into broncitis, and two weeks

ago pneumonia, i fought off the pneumonia, but within three days

right back into broncitis, i got to the point where i couldnt breath

so we rushed to my primary (no sennse sitting in a ER waiting room),

he could not believe my color, or that i was standing, my 02 stats

were at 70, which really surprised all of us, but none the less i

was getting no oxygen in either lungs from middle down, we did 3

nebulizer treatments and they could finally hear weezing, im on

heavy duty steroids for the next month, antibiotics and a stonger

inhaler,nO choice i must kick my cigerette habit pronto!!! will

need to see a allergist, for ashma and shots, (the cats are killing

me too), then will find a pulmonologist, Doc says previous x-ray

during pneumonia showed i have what he calls mito-emphesima, from

smoking, which of course would have happened later in life but

because of mito it is now. Mito is progressing faster than they

thought it would. That is why the desperation in the biopsy, if

they know the mutation they can look at better options of treatment

which they assured me there is new treatment out there. Im not

ready to be this ill, so if you dont hear from me as often you know

why, i will try to keep you all updated and try to teach my kids and

husband Bob how to keep yas posted if i cant. Im really tired, and

my bed is where im spending all my time as trying to get up and down

the stairs is impossible, God only knows what my house looks like!

Matt is scared for me, my older two are doing the denial thing right

now, and Bob did not take the news from the doc very well, he

totally lost it. Bob knows to get me right to the hospital before

my o2 sats get that bad again. He is working close to home and the

older kids are hear to help too. I have oxygen to suck on for now

and will get a nebulizer hear at home. Doc explained that every

cold, ashma attack, will be worse each time and i dont have to

explain the rest to you, you all know what that means. Well i have

to go lay back down. I keep you all in my prayers! Barb

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April 27, 2005

Barb

I will keep you, Matt and the family in my thoughts.

I think you will find that the nebulizer will really make a

difference. When I get a cold or whatever respiratory that is going

around, I start using the nebulizer and have avoided bronchitis most

of the time.

Hugs,

laurie

>

> Hey all, i have to keep this brief, we decide for the 2nd biopsy for

> Matt as he is strong enough to go through this at this time, we

> decide that we will wait until after June 13, which will be his

> ninth birthday. We told them just to give Matt a day or two after

> his birthday to bring him in. Through long debate over this, and

> all your support, the final decision was made, two days ago, as ive

> been battle a cold which keeps going into broncitis, and two weeks

> ago pneumonia, i fought off the pneumonia, but within three days

> right back into broncitis, i got to the point where i couldnt breath

> so we rushed to my primary (no sennse sitting in a ER waiting room),

> he could not believe my color, or that i was standing, my 02 stats

> were at 70, which really surprised all of us, but none the less i

> was getting no oxygen in either lungs from middle down, we did 3

> nebulizer treatments and they could finally hear weezing, im on

> heavy duty steroids for the next month, antibiotics and a stonger

> inhaler,nO choice i must kick my cigerette habit pronto!!! will

> need to see a allergist, for ashma and shots, (the cats are killing

> me too), then will find a pulmonologist, Doc says previous x-ray

> during pneumonia showed i have what he calls mito-emphesima, from

> smoking, which of course would have happened later in life but

> because of mito it is now. Mito is progressing faster than they

> thought it would. That is why the desperation in the biopsy, if

> they know the mutation they can look at better options of treatment

> which they assured me there is new treatment out there. Im not

> ready to be this ill, so if you dont hear from me as often you know

> why, i will try to keep you all updated and try to teach my kids and

> husband Bob how to keep yas posted if i cant. Im really tired, and

> my bed is where im spending all my time as trying to get up and down

> the stairs is impossible, God only knows what my house looks like!

> Matt is scared for me, my older two are doing the denial thing right

> now, and Bob did not take the news from the doc very well, he

> totally lost it. Bob knows to get me right to the hospital before

> my o2 sats get that bad again. He is working close to home and the

> older kids are hear to help too. I have oxygen to suck on for now

> and will get a nebulizer hear at home. Doc explained that every

> cold, ashma attack, will be worse each time and i dont have to

> explain the rest to you, you all know what that means. Well i have

> to go lay back down. I keep you all in my prayers! Barb

>

> ---------------------------------------------------------------------

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April 27, 2005

It's so hard to decide for our kids whether more testing is better or

worse. My younger son has not had a muscle biopsy yet, we're hoping

they get genetic results from my testing so they can just do a blood

test on him and my other kids.

Sorry you are having lung problems, my older son had asthma, and it

turned out to be a combination of allergies and a sinus infection.

His peak flow went from 150 to 220 after antibiotic treatment.

Rest up, and try not to worry too much. Make sure if possible you

get nicotine patches to help you quit, you can have rebound effects

if you go cold turkey.

Take care,

RH