RE: Update..Rehab Day 11

[Guest guest]

GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO, Becki! Love, n

Update..Rehab Day 11

Hi

I had another lung bleed this weekend and l pushing it to stay out 1 month

this time. But its getting harder and I hate the fevers. I have some days that

feel like I might see a slight improvement then take 10 steps back the next

day

ITs hard to believe this past January I thought I was getting really close to

the end as were my docs.I really didn't think I would make it. It was so bad

the TX team was worried. Thankfully I just keep on keeping on. I am stronger

thanks to an awsome rehab facility...even if my HR does sky rocket ...today it

was 175.But, I was barely walking, they have tried everything but it still

shoots up...its just from the pulmo hypertension...My resting HR this morning

was

150 so hey, I guess 175 isn't that bad...lol

If I waited for it to go down I wouldn't accomplish anything. If I do so much

as cough my HR hits 200 in about 5 secs.

I think though ,that if I hadn't started this rehab program after I was so

sick...I really am scard to think hat would happen at the next infection. I

was

just so weak....I could no longer even lift my legs off the floor. I can now

lift them about 1-2 inches...even though I strain until I end up with

unpleasant side effects but the hip problems and stuff have really messed up

my legs

and then spending 8 weeks in bed didn't help either. But hey, its progress.

Its a hard program but its the best Ive been too and Ive been to bunches...I

flunked out of UNC's b/c I didn't improve and kept going int he hospital. I

wasn't pre-TX yet 2 yrs ago so they had to give my spot to a pre-TX person. I

guess I understan. ALso the jerky Cf doc there told them that it was

amechanical

error , that my Sats and HR couldn't be what they said. The jerk. COmes to

find out it was but he wouldn't even blew my shunt study or ABG's. I didn't

even

realize my C02 was high...it had been 60ish for years now when Im healthy.

But hey, they D/Cd me with an ABG of 83% on 4L saying thats ok. but I didnt

see

their TX program only the pulmo team.

Anyways,you have no idea how good it feels to accomplish something like walk

13 laps for the first time around the track ! ! ! It may not sound like much

but I started out using a walker...I can now pull my oxygen behind me on one

of

those suitcase things they use there like everyone else. They even commented

on how much better I am walking...I have a strange gait...almost like someone

with a muscular dystrophy but its b/c of the SDS. It causes Hypotonia and can

cause malformations in the bones...primarily the hip. My hip joint doesn't

connect well so ceratin muscles don't work quite right. Others are fine. B/c

of

this my right hip has permanently externally rotated. They have adapted all

my

exercises for my bad joints and stuff. There is another girl who has a rare

disorder that has affected her bones since she was 3. Shes had so many bone

surgeries ... as sweet and nice as can be.She's really young too...a little

older

than me and has one of those lovely rare disorders. Actually the TX group has

several weird cases...lol...not the usual CF bunch. The only Cfers are post

-Tx.No I take that back. There is one younger guy with CF. The only surviving

triplet. All 3 were born with Cf and 2 died this summer. I really hurt for the

mom.

I think the biggest plus is the post-tx folks who you can see exercising. One

poor guy is upset b/c he only hhas 50%...but my lord yo8u should see him book

around the track and bike and arm thingie...its amazing. None of them look

sick anymore either.

The two newest TX patients who have hit a lot of the bumps in the road look

awsome. They are gaining weight, slowly, and looking so healthy ! ! ! They are

all so nice too. I think thats the #1 thing. I finally can socialize with

people like myself. You never feel self concious about coughing and choking

until

you puke, tuirning blue, snotting and snotting, the oxygen or just looking

sick b/c everyone is either there or hgas been there.

One of the guys there who got TX is pretty cool. He got TX last year and I

just look at him in awe.My hubby too....they commented on how well Brad looks

and seems and yet he commented on how he would have never known this guy had

CF

until he started talking,the CF voice thing...lol.

Anyways...thats my update for today....

Becki

Life is not measured by the number of breaths we take, but by the moments

that take our breath away.

Listed for Lungs 1/14/04

at

Mayo Clinic ville,Fla.

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

Becki,

You are an amazing person. I am putting you in my morning thoughts

before I get out of bed. You make me want to be a better person, a

better parent, a better part of this world. Thank you for being the

person that you are. I don't even know you but I can feel your strength

thru the computer. Sounds corny, oh well, it's true. You make me want

to be better at everything I do. Thank you so much. Keep fighting girl

friend.

Love,

Cheryl, mom to 3 boys, Zac 8 yrs. wocf, Jake 3 yrs. wocf, 2 yrs.

wcf

Re: Update..Rehab Day 11

GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO, Becki! Love, n

Update..Rehab Day 11

Hi

I had another lung bleed this weekend and l pushing it to stay out 1

month

this time. But its getting harder and I hate the fevers. I have some

days that

feel like I might see a slight improvement then take 10 steps back the

next day

ITs hard to believe this past January I thought I was getting really

close to

the end as were my docs.I really didn't think I would make it. It was

so bad

the TX team was worried. Thankfully I just keep on keeping on. I am

stronger

thanks to an awsome rehab facility...even if my HR does sky rocket

....today it

was 175.But, I was barely walking, they have tried everything but it

still

shoots up...its just from the pulmo hypertension...My resting HR this

morning was

150 so hey, I guess 175 isn't that bad...lol

If I waited for it to go down I wouldn't accomplish anything. If I do

so much

as cough my HR hits 200 in about 5 secs.

I think though ,that if I hadn't started this rehab program after I

was so

sick...I really am scard to think hat would happen at the next

infection. I was

just so weak....I could no longer even lift my legs off the floor. I

can now

lift them about 1-2 inches...even though I strain until I end up with

unpleasant side effects but the hip problems and stuff have really

messed up my legs

and then spending 8 weeks in bed didn't help either. But hey, its

progress.

Its a hard program but its the best Ive been too and Ive been to

bunches...I

flunked out of UNC's b/c I didn't improve and kept going int he

hospital. I

wasn't pre-TX yet 2 yrs ago so they had to give my spot to a pre-TX

person. I

guess I understan. ALso the jerky Cf doc there told them that it was

amechanical

error , that my Sats and HR couldn't be what they said. The jerk.

COmes to

find out it was but he wouldn't even blew my shunt study or ABG's. I

didn't even

realize my C02 was high...it had been 60ish for years now when Im

healthy.

But hey, they D/Cd me with an ABG of 83% on 4L saying thats ok. but I

didnt see

their TX program only the pulmo team.

Anyways,you have no idea how good it feels to accomplish something

like walk

13 laps for the first time around the track ! ! ! It may not sound

like much

but I started out using a walker...I can now pull my oxygen behind me

on one of

those suitcase things they use there like everyone else. They even

commented

on how much better I am walking...I have a strange gait...almost like

someone

with a muscular dystrophy but its b/c of the SDS. It causes Hypotonia

and can

cause malformations in the bones...primarily the hip. My hip joint

doesn't

connect well so ceratin muscles don't work quite right. Others are

fine. B/c of

this my right hip has permanently externally rotated. They have

adapted all my

exercises for my bad joints and stuff. There is another girl who has a

rare

disorder that has affected her bones since she was 3. Shes had so many

bone

surgeries ... as sweet and nice as can be.She's really young too...a

little older

than me and has one of those lovely rare disorders. Actually the TX

group has

several weird cases...lol...not the usual CF bunch. The only Cfers are

post

-Tx.No I take that back. There is one younger guy with CF. The only

surviving

triplet. All 3 were born with Cf and 2 died this summer. I really hurt

for the

mom.

I think the biggest plus is the post-tx folks who you can see

exercising. One

poor guy is upset b/c he only hhas 50%...but my lord yo8u should see

him book

around the track and bike and arm thingie...its amazing. None of them

look

sick anymore either.

The two newest TX patients who have hit a lot of the bumps in the road

look

awsome. They are gaining weight, slowly, and looking so healthy ! ! !

They are

all so nice too. I think thats the #1 thing. I finally can socialize

with

people like myself. You never feel self concious about coughing and

choking until

you puke, tuirning blue, snotting and snotting, the oxygen or just

looking

sick b/c everyone is either there or hgas been there.

One of the guys there who got TX is pretty cool. He got TX last year

and I

just look at him in awe.My hubby too....they commented on how well

Brad looks

and seems and yet he commented on how he would have never known this

guy had CF

until he started talking,the CF voice thing...lol.

Anyways...thats my update for today....

Becki

Life is not measured by the number of breaths we take, but by the

moments

that take our breath away.

Listed for Lungs 1/14/04

at

Mayo Clinic ville,Fla.

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

Dear Becky,

t is good to hear you do see the value of all this sweat & tears your going

thru . The end results will really help you as you need it with the

TX ------ & that will be soon. :)

I hold you in my " special thoughts " . take care , keep up the good work . I

hope all unpleasant " stuff " gets away from you soon

LOVE & HUGS< GrandmoMBEV

Update..Rehab Day 11

Hi

I had another lung bleed this weekend and l pushing it to stay out 1 month

this time. But its getting harder and I hate the fevers. I have some days

that

feel like I might see a slight improvement then take 10 steps back the next

day

ITs hard to believe this past January I thought I was getting really close

to

the end as were my docs.I really didn't think I would make it. It was so bad

the TX team was worried. Thankfully I just keep on keeping on. I am stronger

thanks to an awsome rehab facility...even if my HR does sky rocket ...today

it

was 175.But, I was barely walking, they have tried everything but it still

shoots up...its just from the pulmo hypertension...My resting HR this

morning was

150 so hey, I guess 175 isn't that bad...lol

If I waited for it to go down I wouldn't accomplish anything. If I do so

much

as cough my HR hits 200 in about 5 secs.

I think though ,that if I hadn't started this rehab program after I was so

sick...I really am scard to think hat would happen at the next infection. I

was

just so weak....I could no longer even lift my legs off the floor. I can now

lift them about 1-2 inches...even though I strain until I end up with

unpleasant side effects but the hip problems and stuff have really messed

up my legs

and then spending 8 weeks in bed didn't help either. But hey, its progress.

Its a hard program but its the best Ive been too and Ive been to bunches...I

flunked out of UNC's b/c I didn't improve and kept going int he hospital. I

wasn't pre-TX yet 2 yrs ago so they had to give my spot to a pre-TX person.

I

guess I understan. ALso the jerky Cf doc there told them that it was

amechanical

error , that my Sats and HR couldn't be what they said. The jerk. COmes to

find out it was but he wouldn't even blew my shunt study or ABG's. I didn't

even

realize my C02 was high...it had been 60ish for years now when Im healthy.

But hey, they D/Cd me with an ABG of 83% on 4L saying thats ok. but I didnt

see

their TX program only the pulmo team.

Anyways,you have no idea how good it feels to accomplish something like walk

13 laps for the first time around the track ! ! ! It may not sound like much

but I started out using a walker...I can now pull my oxygen behind me on one

of

those suitcase things they use there like everyone else. They even commented

on how much better I am walking...I have a strange gait...almost like

someone

with a muscular dystrophy but its b/c of the SDS. It causes Hypotonia and

can

cause malformations in the bones...primarily the hip. My hip joint doesn't

connect well so ceratin muscles don't work quite right. Others are fine. B/c

of

this my right hip has permanently externally rotated. They have adapted all

my

exercises for my bad joints and stuff. There is another girl who has a rare

disorder that has affected her bones since she was 3. Shes had so many bone

surgeries ... as sweet and nice as can be.She's really young too...a little

older

than me and has one of those lovely rare disorders. Actually the TX group

has

several weird cases...lol...not the usual CF bunch. The only Cfers are post

-Tx.No I take that back. There is one younger guy with CF. The only

surviving

triplet. All 3 were born with Cf and 2 died this summer. I really hurt for

the

mom.

I think the biggest plus is the post-tx folks who you can see exercising.

One

poor guy is upset b/c he only hhas 50%...but my lord yo8u should see him

book

around the track and bike and arm thingie...its amazing. None of them look

sick anymore either.

The two newest TX patients who have hit a lot of the bumps in the road look

awsome. They are gaining weight, slowly, and looking so healthy ! ! ! They

are

all so nice too. I think thats the #1 thing. I finally can socialize with

people like myself. You never feel self concious about coughing and choking

until

you puke, tuirning blue, snotting and snotting, the oxygen or just looking

sick b/c everyone is either there or hgas been there.

One of the guys there who got TX is pretty cool. He got TX last year and I

just look at him in awe.My hubby too....they commented on how well Brad

looks

and seems and yet he commented on how he would have never known this guy had

CF

until he started talking,the CF voice thing...lol.

Anyways...thats my update for today....

Becki

Life is not measured by the number of breaths we take, but by the moments

that take our breath away.

Listed for Lungs 1/14/04

at

Mayo Clinic ville,Fla.

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/