Re: Update On

[Guest guest]

Hi ,

I'm sorry to hear is struggling. I know it's scarey, but don't

think that it is all down hill from there. Shantell grew two different

resistant to most medications last time she was hospitalized in January.

The Tobramycin and Ceftazydne (spelling) worked for her. Pseudo is a

rough bacteria, but you can fool it with medications, you will just need to find

the right ones. You may want to ask your doctor to check her sinuses,

too. I have heard (and this has happened to Shantell) that if you culture

two pseudo's that one may be dripping from the sinuses. Shantell has one

form in the sinus that is not resistant to Gentamycin, and the other pseudo in

the lungs is resistant to Gent and not Tobramycin. So we kill them

both! I know all of you out there are scared to death of pseudo, but the

more I read about it the more I believe the kids with CF are inclined to have

some form of pseudo from early, early on. Remember that pseudo is

everywhere, it's on your hands, its everywhere. To normal healthy lungs,

this bug doesn't harbor in the lungs. I think CF kids have been

fighting it for longer than we can find in a culture (but this is my thoughts,

and I'm no doctor). It just becomes more predominant as the lungs try to

fight it off, and the bug gets a little smarter. I try to think of it as

fooling that monster to keep it under control. Shantell's lung functions

are in the 70's, and she's 19. She's had pseudo for at least 5 years that

I can recall. Like you, I get scared the older she gets, and I just keep

reminding myself that she can make it!

FG, mom of Shantell 19yr wcf

Update On

Oh boy, where do I start! We left last week for Sacramento to go

have

's port a cath changed. Thank you to all who responded to

my earlier

posts! She went to surgery last Thursday.

chose to have the port placed on the right side of her chest, just

above her breast. The one they took out was in the exact place,

but on the

left side. Surgery took about an hour longer as her port didn't

want to come

out. It had been in for almost seven and a half

years! Her surgeon actually

said that he will make a maximum now of five years. 's was

the longest

lasting port he has ever put in!

was in more pain than I thought after surgery. Even now,

it is still

rather tender. I guess I don't remember this from the last

one. Her CF

doctor had them suction her lungs and get a good sputum for

culturing. I was

to call him today to find out what grew and what our game plan was for IV

therapy.

She has been getting sicker as the days go by. ended up

in the ER on

Monday night (last night). She was crying that it hurt to

breathe. This is

my limit, then I get a bit freaked. We went through blood work,

chest x-rays

and people who don't have clue to what CF is!!!! I could explain

it for an

hour, it was just ridiculous. They finally called her CF doctor

and he said

to run Tobramycin and Aztrenam. When the ER doc came back to tell me this I

again had to inform him that she IS allergic to Aztenam! So, his

decision

was to run Tobramycin and call her CF doctor in the morning. By

this time I

knew that she at least didn't have a collapsed lung and the new port was

OK.

I just wanted to go home, and so did she!

So, off to the doctor this am. We have all been waiting for the

results to

come back on the sputum culture. Two psudomonas organisms that

are very

resistant grew. The two good choices of meds she is very

allergic to. So we

are running Zocyn and Tobramycin and they have sent her sputum for synergy

testing.

Does anyone else have this problem? It seems to me that this

isn't good to

be coming against at age 14? Her FEV 1 is dropped to 61%.

I hate CF and this isn't getting any easier to deal with as she and I get

older. I am now 32 and this was much easier to deal with at

23! My fear of

loosing her grows each day, especially as I see our list loosing more CF

patients.

Thanks for listening,

, Mom of , 14 wcf

[Guest guest]

,

Sorry is having such a bad time. I also hate explaining cf to people

who should know about it. A few admissions ago a nurse was filling in the

admission chart and asked if she took any medication! I felt like slapping

her. Then I had to go through all the stuff and spell everything. Gave me

heaps of confidence, I don't think.

Update On

> Oh boy, where do I start! We left last week for Sacramento to go have

> 's port a cath changed. Thank you to all who responded to my

earlier

> posts! She went to surgery last Thursday.

> chose to have the port placed on the right side of her chest, just

> above her breast. The one they took out was in the exact place, but on

the

> left side. Surgery took about an hour longer as her port didn't want to

come

> out. It had been in for almost seven and a half years! Her surgeon

actually

> said that he will make a maximum now of five years. 's was the

longest

> lasting port he has ever put in!

> was in more pain than I thought after surgery. Even now, it is

still

> rather tender. I guess I don't remember this from the last one. Her CF

> doctor had them suction her lungs and get a good sputum for culturing. I

was

> to call him today to find out what grew and what our game plan was for IV

> therapy.

> She has been getting sicker as the days go by. ended up in the ER

on

> Monday night (last night). She was crying that it hurt to breathe. This

is

> my limit, then I get a bit freaked. We went through blood work, chest

x-rays

> and people who don't have clue to what CF is!!!! I could explain it for

an

> hour, it was just ridiculous. They finally called her CF doctor and he

said

> to run Tobramycin and Aztrenam. When the ER doc came back to tell me this

I

> again had to inform him that she IS allergic to Aztenam! So, his decision

> was to run Tobramycin and call her CF doctor in the morning. By this time

I

> knew that she at least didn't have a collapsed lung and the new port was

OK.

> I just wanted to go home, and so did she!

> So, off to the doctor this am. We have all been waiting for the results

to

> come back on the sputum culture. Two psudomonas organisms that are very

> resistant grew. The two good choices of meds she is very allergic to. So

we

> are running Zocyn and Tobramycin and they have sent her sputum for synergy

> testing.

> Does anyone else have this problem? It seems to me that this isn't good

to

> be coming against at age 14? Her FEV 1 is dropped to 61%.

> I hate CF and this isn't getting any easier to deal with as she and I get

> older. I am now 32 and this was much easier to deal with at 23! My fear

of

> loosing her grows each day, especially as I see our list loosing more CF

> patients.

> Thanks for listening,

> , Mom of , 14 wcf

>

>

>

[Guest guest]

I had to laugh when I read this as that is exactly what I felt like doing at

the ER the other night. I mean if you can't go to the ER and talk to a nurse

or a doctor like they an invalid, why are they practicing medicine?!

I knew I wouldn't get anywhere with her but somehow I just felt better

knowing we were in a hospital, where we should get some help!

I love it when we get to about the 10th medication and they say they don't

have anymore room!

Take care and thank you for your response!

[Guest guest]

,

While I am glad to see that 's surgery went fine and that she is home, it

is sad to know she isn't feeling well--I will keep you both in my thoughts and

hope for a brighter day soon!

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...

Update On

Oh boy, where do I start! We left last week for Sacramento to go have

's port a cath changed. Thank you to all who responded to my earlier

posts! She went to surgery last Thursday.

chose to have the port placed on the right side of her chest, just

above her breast. The one they took out was in the exact place, but on the

left side. Surgery took about an hour longer as her port didn't want to come

out. It had been in for almost seven and a half years! Her surgeon actually

said that he will make a maximum now of five years. 's was the longest

lasting port he has ever put in!

was in more pain than I thought after surgery. Even now, it is still

rather tender. I guess I don't remember this from the last one. Her CF

doctor had them suction her lungs and get a good sputum for culturing. I was

to call him today to find out what grew and what our game plan was for IV

therapy.

She has been getting sicker as the days go by. ended up in the ER on

Monday night (last night). She was crying that it hurt to breathe. This is

my limit, then I get a bit freaked. We went through blood work, chest x-rays

and people who don't have clue to what CF is!!!! I could explain it for an

hour, it was just ridiculous. They finally called her CF doctor and he said

to run Tobramycin and Aztrenam. When the ER doc came back to tell me this I

again had to inform him that she IS allergic to Aztenam! So, his decision

was to run Tobramycin and call her CF doctor in the morning. By this time I

knew that she at least didn't have a collapsed lung and the new port was OK.

I just wanted to go home, and so did she!

So, off to the doctor this am. We have all been waiting for the results to

come back on the sputum culture. Two psudomonas organisms that are very

resistant grew. The two good choices of meds she is very allergic to. So we

are running Zocyn and Tobramycin and they have sent her sputum for synergy

testing.

Does anyone else have this problem? It seems to me that this isn't good to

be coming against at age 14? Her FEV 1 is dropped to 61%.

I hate CF and this isn't getting any easier to deal with as she and I get

older. I am now 32 and this was much easier to deal with at 23! My fear of

loosing her grows each day, especially as I see our list loosing more CF

patients.

Thanks for listening,

, Mom of , 14 wcf

[Guest guest]

You know, when we go to the ER, we have the same d--- problem!!! I was just

reviewing some of Cody's recent medical records, and as I was reading the report

from his OR visit on June 24th, when his PICC line was going bad (before the

port was placed), I about died!!! I told the idiot doctor that he has CF, and

he gave me a blank look, so I told him he has cystic fibrosis, and you know what

the report says? " He has a sister with fibrosis " --OH MY GOD!!!! HELLOOOOO,

where did THAT come from??? DUHHHH!! And there was the time when Cody's g-tube

came out (balloon busted), and we didn't have a spare one at home (had just

used it to replace it the week before--this was an accident). SO, we hauled him

over to the ER, to find out they don't have them at the hospital. So we had to

wait over two hours for them to get one from the Healthcare Accessories (later

his doc called them and chewed them out, as they were supposed to call him, or

at least get a GI doc in there!). THEN, when it finally came, there was NO ONE

there who knew how to put them in!!!!! Unbelievable!! So, Mark put it in, but

do you think we got a discount on our bill? H---, no!!! And yes, I AM still

ticked off about this!! LOL

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...

Update On

Oh boy, where do I start! We left last week for Sacramento to go have

's port a cath changed. Thank you to all who responded to my earlier

posts! She went to surgery last Thursday.

chose to have the port placed on the right side of her chest, just

above her breast. The one they took out was in the exact place, but on the

left side. Surgery took about an hour longer as her port didn't want to come

out. It had been in for almost seven and a half years! Her surgeon actually

said that he will make a maximum now of five years. 's was the longest

lasting port he has ever put in!

was in more pain than I thought after surgery. Even now, it is still

rather tender. I guess I don't remember this from the last one. Her CF

doctor had them suction her lungs and get a good sputum for culturing. I was

to call him today to find out what grew and what our game plan was for IV

therapy.

She has been getting sicker as the days go by. ended up in the ER on

Monday night (last night). She was crying that it hurt to breathe. This is

my limit, then I get a bit freaked. We went through blood work, chest x-rays

and people who don't have clue to what CF is!!!! I could explain it for an

hour, it was just ridiculous. They finally called her CF doctor and he said

to run Tobramycin and Aztrenam. When the ER doc came back to tell me this I

again had to inform him that she IS allergic to Aztenam! So, his decision

was to run Tobramycin and call her CF doctor in the morning. By this time I

knew that she at least didn't have a collapsed lung and the new port was OK.

I just wanted to go home, and so did she!

So, off to the doctor this am. We have all been waiting for the results to

come back on the sputum culture. Two psudomonas organisms that are very

resistant grew. The two good choices of meds she is very allergic to. So we

are running Zocyn and Tobramycin and they have sent her sputum for synergy

testing.

Does anyone else have this problem? It seems to me that this isn't good to

be coming against at age 14? Her FEV 1 is dropped to 61%.

I hate CF and this isn't getting any easier to deal with as she and I get

older. I am now 32 and this was much easier to deal with at 23! My fear of

loosing her grows each day, especially as I see our list loosing more CF

patients.

Thanks for listening,

, Mom of , 14 wcf

[Guest guest]

,

I totally understand what you mean! It's sooooooooo irritating! The best

part was the respiratory therapist brought a peak flow meter to get an

FEV1!!!!!!!!!! I just looked at him with daggers and said, " you aren't going

to get an FEV1 with that!). I told him exactly where to go in the hospital

to get the laptop PFT machine and to bring it down here and then go back up

and print it out! He looked at me as if I shouldn't have known where the

proper piece of equipment was!

LOL, as it is all we can do!

[Guest guest]

LOL! I don't think they make a form to fit Cystic Fibrosis!!!

[Guest guest]

,

I laughed when they give me schools forms, sporting forms etc. for Eilish

and have about two lines to explain 'medical problems & medication'. Gee we

could all write a book!

Re: Update On

>

> I had to laugh when I read this as that is exactly what I felt like doing

at

> the ER the other night. I mean if you can't go to the ER and talk to a

nurse

> or a doctor like they an invalid, why are they practicing medicine?!

> I knew I wouldn't get anywhere with her but somehow I just felt better

> knowing we were in a hospital, where we should get some help!

> I love it when we get to about the 10th medication and they say they don't

> have anymore room!

> Take care and thank you for your response!

>

>

>

>

[Guest guest]

Thank you! I honestly have to give you a lot of credit. Two with CF and then

to have a child spend that much time in the hospital. I really get upset

sometimes at the fact that one person with CF can do wonderful and one

struggles. I know that GOD has given each of these individuals a gift as it

seems like all CFers can grab a person with their strong personalities and

give so much love!

I hope Zack and Rikki can stay well. Best of wishes!

[Guest guest]

Hi

I know exactly where you are coming from. Zach spent the best part

of last year in hospital, 13 weeks straight at one point, which

included christmas and new years and his 9th birthday. Things just

seemed to go from bad to worse and I really thought we were starting

to look at the beginning of the end. But as he is apt to do he

bounced back once again and was home for about 4 months and doing

really well. He has just come home on Monday once again after a two

week stint in hospital and he is doing ok. It never ceases to amaze

me what this kid can go through and still keep a smile on his dial

and keep those nurses(all of whom we love) on their toes.

I guess all that we can do is everything that we are doing now and

be there for them and love them like crazy. Probably not much of a

help to you at the moment but just know that there are others of us

out here who are thinking of you all.

NZ mum of Zach nearly 10wcf and Rikki-Lee 8wcf

-- In cfparents@y..., lisacl87@a... wrote:

> Oh boy, where do I start! We left last week for Sacramento to go

have

> 's port a cath changed. Thank you to all who responded to my

earlier

> posts! She went to surgery last Thursday.

> chose to have the port placed on the right side of her

chest, just

> above her breast. The one they took out was in the exact place,

but on the

> left side. Surgery took about an hour longer as her port didn't

want to come

> out. It had been in for almost seven and a half years! Her

surgeon actually

> said that he will make a maximum now of five years. 's was

the longest

> lasting port he has ever put in!

> was in more pain than I thought after surgery. Even now, it

is still

> rather tender. I guess I don't remember this from the last one.

Her CF

> doctor had them suction her lungs and get a good sputum for

culturing. I was

> to call him today to find out what grew and what our game plan was

for IV

> therapy.

> She has been getting sicker as the days go by. ended up in

the ER on

> Monday night (last night). She was crying that it hurt to

breathe. This is

> my limit, then I get a bit freaked. We went through blood work,

chest x-rays

> and people who don't have clue to what CF is!!!! I could explain

it for an

> hour, it was just ridiculous. They finally called her CF doctor

and he said

> to run Tobramycin and Aztrenam. When the ER doc came back to tell

me this I

> again had to inform him that she IS allergic to Aztenam! So, his

decision

> was to run Tobramycin and call her CF doctor in the morning. By

this time I

> knew that she at least didn't have a collapsed lung and the new

port was OK.

> I just wanted to go home, and so did she!

> So, off to the doctor this am. We have all been waiting for the

results to

> come back on the sputum culture. Two psudomonas organisms that are

very

> resistant grew. The two good choices of meds she is very allergic

to. So we

> are running Zocyn and Tobramycin and they have sent her sputum for

synergy

> testing.

> Does anyone else have this problem? It seems to me that this isn't

good to

> be coming against at age 14? Her FEV 1 is dropped to 61%.

> I hate CF and this isn't getting any easier to deal with as she and

I get

> older. I am now 32 and this was much easier to deal with at 23!

My fear of

> loosing her grows each day, especially as I see our list loosing

more CF

> patients.

> Thanks for listening,

> , Mom of , 14 wcf

>

>

>

[Guest guest]

LOL LOL LOL That guy sounds a bit like an idiot! LOL

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...

Re: Update On

,

I totally understand what you mean! It's sooooooooo irritating! The best

part was the respiratory therapist brought a peak flow meter to get an

FEV1!!!!!!!!!! I just looked at him with daggers and said, " you aren't going

to get an FEV1 with that!). I told him exactly where to go in the hospital

to get the laptop PFT machine and to bring it down here and then go back up

and print it out! He looked at me as if I shouldn't have known where the

proper piece of equipment was!

LOL, as it is all we can do!

[Guest guest]

In a message dated 7/26/2001 1:47:15 AM Eastern Daylight Time,

smichelle15@... writes:

<< so I told him he has cystic fibrosis, and you know what the report says?

" He has a sister with fibrosis " -- >>

That was that the funniest /scariest thing I heard.....

Rosemary in New York with three children with CF - they are 11, 8.6,

4.8........

I coined the phrase " BREATHE DAMMIT "

I have the luck of the Irish....

[Guest guest]

,

I know exactly how you feel because last Christmas my daughters cup for he

nebulizer broke. We called the hospital and talked to the pul. doctor on call

he didn't have any idea what kind of cup we need for her med.'s he keep

telling us to use the one that came with the machine and I kept telling him I

don't think that will work because I know they told us not to ever us that

cup with the kind of medicine we were using. Well, then he told me to use are

other daughter cup (she was 3 at the time) and I told them they don't even

want us to use the same hoses for the nebulizer why would we use the same cup

and that they worry about them passing the bacteria back and forth. That is

why we treat them both if one gets the bacteria they both get treatments.

Well, to make this story shorter I finally found the box for the old cup and

told him where we got the first cup and he finally got a hold of the company

and the company meet us half way so we could have it on Christmas day. But I

swear some of those residents don't know diddly squat.

Deb mom of 9 w/CF and Lynzie 7 WO/CF and Natalynn 4 w/CF

[Guest guest]

had her surgery today and we are home all ready. Everything went

real good. They did the bronchoscope and they got the polyps out too. She got

sick when we got home but other then that I think she was a real trooper. It

is so amazing how well these kids do. When I was little I use to have a fit

just to get a shot. If I was her I would have did everything in my power to

leave that hospital but she just walked right up there and did what she had

to do. She is a truly amazing kid. Deb mom of w/CF Lynzie WO/CF and

Natalynn w/CF

[Guest guest]

What a Love is

I'm glad to hear her surgery went well and she is home recoperating. She's a

brave soul and you must be so proud.

Take Care,

Stein......mom to CF (14 mo) & Tori wo/CF (4 yr)

Re: Re: Update On

had her surgery today and we are home all ready. Everything went

real good. They did the bronchoscope and they got the polyps out too. She got

sick when we got home but other then that I think she was a real trooper. It

is so amazing how well these kids do. When I was little I use to have a fit

just to get a shot. If I was her I would have did everything in my power to

leave that hospital but she just walked right up there and did what she had

to do. She is a truly amazing kid. Deb mom of w/CF Lynzie WO/CF and

Natalynn w/CF

[Guest guest]

Deb,

Glad to hear it went well for and she's done with that! It

is amazing how strong they are, isn't it? I often look at my daughter and

think to myself, " Man!, I would never have made it through that. "

FG, mom of Shantell 19yr wcf

Re: Re: Update On

had her surgery today and we are home all ready. Everything went

real good. They did the bronchoscope and they got the polyps out too. She

got

sick when we got home but other then that I think she was a real trooper.

It

is so amazing how well these kids do. When I was little I use to have a fit

just to get a shot. If I was her I would have did everything in my power to

leave that hospital but she just walked right up there and did what she had

to do. She is a truly amazing kid. Deb mom of w/CF Lynzie WO/CF

and

Natalynn w/CF

[Guest guest]

Glad did well with her surgery.

Take care

Jen

> What a Love is

> I'm glad to hear her surgery went well and she is home recoperating.

She's a brave soul and you must be so proud.

>

> Take Care,

>

> Stein......mom to CF (14 mo) & Tori wo/CF (4 yr)

> Re: Re: Update On

>

>

> had her surgery today and we are home all ready.

Everything went

> real good. They did the bronchoscope and they got the polyps out

too. She got

> sick when we got home but other then that I think she was a real

trooper. It

> is so amazing how well these kids do. When I was little I use to

have a fit

> just to get a shot. If I was her I would have did everything in my

power to

> leave that hospital but she just walked right up there and did

what she had

> to do. She is a truly amazing kid. Deb mom of w/CF Lynzie

WO/CF and

> Natalynn w/CF

>

>

[Guest guest]

They are such brave little kids aren't they. Id faint (well I did once) if

I had to have things cfers do.

Re: Re: Update On

> had her surgery today and we are home all ready. Everything went

> real good. They did the bronchoscope and they got the polyps out too. She

got

> sick when we got home but other then that I think she was a real trooper.

It

> is so amazing how well these kids do. When I was little I use to have a

fit

> just to get a shot. If I was her I would have did everything in my power

to

> leave that hospital but she just walked right up there and did what she

had

> to do. She is a truly amazing kid. Deb mom of w/CF Lynzie WO/CF

and

> Natalynn w/CF

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

,

Yes I am she is such a trooper. I can't believe how much this kid has gone

through and how well she handles things when I was little I would have done

all I can to get out of the room but she was so brave and tried so hard not

to cry I think she tried not to because she knew she would make mom cry if

she did. She would look at me and say Mom are you crying and I would say No

and turn the other way so she couldn't tell. These kids have to grow up so

fast to be able to deal with all this stuff I think sometimes she is more

grown up then me.

Deb mom of 9 w/CF Lynzie 7 wo/CF and Natalynn 4 w/CF

[Guest guest]

FG,

I think the same way they do go through a lot and they are a lot braver then

I am. I hate to even go to the doctor or dentist on a yearly bases.

has to go back on Friday for a cleaning of her nose and they will put her out

in the surgery room to do it so it is going to seem like to her she is having

it done again. So we have one more bad memory for her to go through and then

we are done for a while I hope.

Deb mom of 9w/cf Lynzie 7wo/cf and Natalynn w/CF

[Guest guest]

Deb-will your hospital allow you to be there with her until she is asleep in

the surgery room? We have advocated at our hospital to let families stay

until the child is asleep the so that it is less traumatic for everyone.

@--->------

(Mom of Amber w/CF age17yrs. and s w/CF died 1988 at age yrs.)

[Guest guest]

Jen,

Thanks! Deb

[Guest guest]

,

yes they let one person in there until she goes to sleep and it really helps

her to be little more comfortable but I am bawling by the time I get out of

there. I want until she is asleep thou. Deb

[Guest guest]

Deb- I know- I know ... it can break your heart to feel so helpless. As a

mother you are supposed to be able to make everything better for your

children. I still have nightmares of my son clinging to his teddy bear and

crying my name- I don't know what is worse, being there or not. But I have to

be there.

@--->------

(Mom of Amber w/CF age17yrs. and s w/CF died 1988 at age yrs.)

[Guest guest]

Deb -

sounds like such a trooper! I would have loved to meet your family

while we were in Iowa City - hopefully next time we visit. Hugs to you and

your family & esp. your sweet . Carey