Questions

[Guest guest]

HELLO SUSAN, I CAN REPLY TO THE EAR STIFFNESS, BOTH MY EARS ARE NOT TENDER, THEY HURT EVEN WHEN I DO NOT HAVE A FLARE, WHEN I GET A FLARE THE PÁIN IS MORE SEVERE. I GET PAIN WHEN I AM IN A AIR CONDITION ROOM FOR A PERIOD OF TIME, THEY LOOK A BIT DEFORMED. IT IS HARD TO GET TO CLEANING . THEY ARE STIFF AND NO WAY I CAN GET TO BEND THEM OR HAVE ANYONE TOUCH THEM. YES ! THIS IS ONE OF THE WAYS RP STARTED WITH ME BESIDES THE SINUS PROBLEMS. THE AURICULA CARITAGE WAS CALCIFIC IN NATURE THE EXTERNAL AUDITORY CANALS WERE BLOCKED TO A SIGNIFICANT DEGREE BY BOTH TRAGAL AND CONCHAL CARTILAGES, I HAD SURGERY AND IT HELP A LITTLE, I AM HAVING PROBLEMS WITH THE BONES BEHIND THE EARS AND THE NECK TOWARDS MY HEAD AND MY JAW BONES. I HAVE ALWAYS WONDERED IF ANYONE ELSE HAD THIS PROBLEM. GOD BLESS ! ISA- Questions Hi All, I have some "general questions that I am asking both the foundation group and the support group because I want as many answers as possible. I would appreciate anyone with any knowledge of these questions to please send in their input. Question no. 1: Does anyone here get knots behind their ears and on their necks and has your doctor said it is a flare? Question no 2: Does anyone here get knots on their legs and if so, what has your doctor said it could be/is?? Question no. 3: Are your ears stiff? I mean, if you are not flaring and someone or something bends/hits your ear somewhat, is it very painful? If so, is this something that has to be lived with because of previous flares making your ears like this? I hope that question makes sense. LOL I've heard of the "floppy" ear with RP but not this "stiffness" that comes with our disease and I was testing everyone in my families ears tonight, and everyone's ears are much more pliable and flexible than mine. Mine are some what stiff and unbendable. Anyone notice this? Anyone done an ear test on their family members? LOL OK, I hope you don't think me totally nuts now, but I would appreciate any input to all or any of the above questions. Thank you in advance, W If God brings you to it-He will bring you through it.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

--- Woods wrote:

> Hi All,

> I have some " general questions that I am asking both

> the foundation group and the support group because I

> want as many answers as possible. I would appreciate

> anyone with any knowledge of these questions to

> please send in their input.

> Question no. 1: Does anyone here get knots behind

> their ears and on their necks and has your doctor

> said it is a flare?

> Question no 2: Does anyone here get knots on their

> legs and if so, what has your doctor said it could

> be/is??

> Question no. 3: Are your ears stiff? I mean, if you

> are not flaring and someone or something bends/hits

> your ear somewhat, is it very painful? If so, is

> this something that has to be lived with because of

> previous flares making your ears like this? I hope

> that question makes sense. LOL I've heard of the

> " floppy " ear with RP but not this " stiffness " that

> comes with our disease and I was testing everyone in

> my families ears tonight, and everyone's ears are

> much more pliable and flexible than mine. Mine are

> some what stiff and unbendable. Anyone notice this?

> Anyone done an ear test on their family members? LOL

> OK, I hope you don't think me totally nuts now, but

> I would appreciate any input to all or any of the

> above questions.

> Thank you in advance,

> W

>

Susu, hope you are as well as possible. No I do not

have knots in my neck, behind my ears,or in my legs.

Also my ears are not stiff or painful, they get a bit

sore and itchy and RED sometimes, but that seems to be

all these days; except for a small sore just where the

lobe joins on to the rest of your ear. It is taking a

long time to heal but I don't know whether it is rp

related or not. Lots of love, Liz

>

__________________________________________________

[Guest guest]

In a message dated 4/30/02 4:07:37 PM Pacific Daylight Time,

susuw@... writes:

<< uestion no. 1: Does anyone here get knots behind their ears and on their

necks and has your doctor said it is a flare? No

Question no 2: Does anyone here get knots on their legs and if so, what has

your doctor said it could be/is?? I have lumps all over. LOL Mostly on

my upper arms and legs. They feel like little swollen glands but there are

thousands of them. LOL Have never asked the dr about them.

Question no. 3: Are your ears stiff? No , Mine are starting to get

floppy.

[Guest guest]

Do I get knots behind my ears and the back of my neck ? The answer is definitely YES, but, does any doctor have an opinion as to why , the answer is definitely NO !

Yes, one of my ears feels stiffer than it used to and again, do not know why.

Have had RP for about 27 years.

[Guest guest]

I was wondering if some of you could help me with questions I should

ask the surgent that is going to replace the cartilage in my nose.I

go to see him on the 5 of June ...I know the standard one but I feel

I need help to make sure I have all the facts...I would appriciate

any help....NINA

[Guest guest]

In a message dated 11/9/2003 7:32:29 PM Central Standard Time,

jgecker@... writes:

Jill

My girls do their vest and their Tobi at the same time and depending on the

medication most medication needs to be at least 4 hours apart. This is the same

medications but they can do Tobi and pulmozyme one right after the other.

Hope this helps Deb A

[Guest guest]

I usually have them do the vest first to open up their lungs then do their

inhalation treatments....We are on out 9th day of TOBI but who is counting? I

thought it sucked waiting for your period every 28 days but this is worse!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

My granddaughter only does pulmo , really as a preventative treatment. But

she does it WITH the vest...... & is reading or watching TV, school " stuff " ,

etc. She is away at college, so, we HOPE, she is still doing it like that

:)

have a great week . I do hope they are doing better & your niece stays well

LOVE & HUGS, grandmoMBEV

questions

It's so hard not being geographically close to my niece. I hate asking my

sister too many questions because she is still so overwhelmed by all of this

as was only diagnosed in September and since she had her 1st tune-up

in October, they have only had to do the treatments on their own for a few

weeks. It's a daunting task, as you all know. Plus, getting all the meds and

the huge expense, finding the time to do it all and the list goes on and on.

Anyway, I just found out yesterday that my niece has pseudomonas. I didn't

know she had cultured for it. Hence, the TOBI treatments are starting. I do

have a question, however. My sister is thinking of getting my niece up an

extra 1/2 hr earlier to get the TOBI and vest treatments in. She said they

need to be done around the same time tho they can't be done together. Does

anyone know if this is correct? If she could just do the vest in the morning

and do TOBI after school and at night it would be so much better. I hate to

see her get up so early on a school day. It will make for a very long and

extraordinarily tiring day. Also, does anyone know how far apart the

treatments need to be? Actually, I don't even know when she does her

pulmozyme. It surely is a juggling act. However, I know they'll all do fine

once they get it all figured out.

Sorry for the rambling.

With caring,

Jill

[Guest guest]

Hi Jill,

Unfortunately, the Tobi should be done just after the vest treatments. After

vest, the airway is clear for the tobi to really get down in where it needs to

go. If they are full of mucus the tobi can't get in as deep to fight the bug.

We try to do them at least 8 hrs apart but I am not sure if there is a hard and

fast rule on the time. We also do the Pulmozyme. We do this in the evening

during vest, after albuterol. The pulmozyme helps to thin the mucus, so it is

more easily brought up after vest treatment or manual pt. Other than the Tobi,

we were told that it is ok to do the nebs during the vest. I think most people

do this but whatever the doc recommends........

I get up at the same time even during the non tobi months, so it isn't as

much of a struggle to get her moving. She is used to being up early and when

she doesn't have to do her tobi she can play before school. Next year it will

be a trick though, since she has to be in school an hour earlier!

questions

It's so hard not being geographically close to my niece. I hate asking my

sister too many questions because she is still so overwhelmed by all of this as

was only diagnosed in September and since she had her 1st tune-up in

October, they have only had to do the treatments on their own for a few weeks.

It's a daunting task, as you all know. Plus, getting all the meds and the huge

expense, finding the time to do it all and the list goes on and on.

Anyway, I just found out yesterday that my niece has pseudomonas. I didn't

know she had cultured for it. Hence, the TOBI treatments are starting. I do have

a question, however. My sister is thinking of getting my niece up an extra 1/2

hr earlier to get the TOBI and vest treatments in. She said they need to be done

around the same time tho they can't be done together. Does anyone know if this

is correct? If she could just do the vest in the morning and do TOBI after

school and at night it would be so much better. I hate to see her get up so

early on a school day. It will make for a very long and extraordinarily tiring

day. Also, does anyone know how far apart the treatments need to be? Actually, I

don't even know when she does her pulmozyme. It surely is a juggling act.

However, I know they'll all do fine once they get it all figured out.

Sorry for the rambling.

With caring,

Jill

[Guest guest]

Hi Jill,

We are doing Tobi right now for Pseudomonas. Tobi should be spaced

out evenly, since there is 2 dosis per day then every 12 hrs. a

usually does the vest first and then the Tobi. If we oversleep then

she does them together. Pulmozyme is done when she comes home from

school at around 3.30 pm. Don't feel sorry for your sister or your

niece. As a mom, the way I see it, this is our life now, it is part

of who we are, like some people get up in the morning and exercise we

get up and do treatments, a is usually sleeping and I get things

ready for the day. If anything, go to bed 30 minutes earlier. You

have to be positive as much as you can, I know not been around makes

it difficult, but we have been dealt a hand and we have to play it

the best we can.

But treatments are just a habit as it is brushing your teeth.

> It's so hard not being geographically close to my niece. I hate

asking my sister too many questions because she is still so

overwhelmed by all of this as was only diagnosed in September

and since she had her 1st tune-up in October, they have only had to

do the treatments on their own for a few weeks. It's a daunting task,

as you all know. Plus, getting all the meds and the huge expense,

finding the time to do it all and the list goes on and on.

>

> Anyway, I just found out yesterday that my niece has pseudomonas. I

didn't know she had cultured for it. Hence, the TOBI treatments are

starting. I do have a question, however. My sister is thinking of

getting my niece up an extra 1/2 hr earlier to get the TOBI and vest

treatments in. She said they need to be done around the same time tho

they can't be done together. Does anyone know if this is correct? If

she could just do the vest in the morning and do TOBI after school

and at night it would be so much better. I hate to see her get up so

early on a school day. It will make for a very long and

extraordinarily tiring day. Also, does anyone know how far apart the

treatments need to be? Actually, I don't even know when she does her

pulmozyme. It surely is a juggling act. However, I know they'll all

do fine once they get it all figured out.

>

> Sorry for the rambling.

>

> With caring,

> Jill

>

>

>

[Guest guest]

Hi,

Lynette wrote:

> We do Albuteral, then we do Pulmozyme, then we do Vest and then we do

TOBi. <

Okay, that's the right order to do the treatments. First you have to open up

the airways with some kind of fast acting bronchodilator like Albuterol,

then comes in a mukolytic like Pulmozyme, after that you have to clear the

airways with whatever works and at last, when the road towards the lung is

free, some kind of antibiotic is inhaled.

In theory you see the best results if you do it that way, but in theory you

have 24 hours a day to do CF treatments. Just in case if you want to have a

life you have to figure out where you can save time (and money).

Just some thoughts (you know that I am no doc). Albuterol is only necessary

if you have constricted airways. But many docs prescribe it without reason

because it is standard. Pulmozyme is only necessary if the mucus is so thick

that it doesn't come out with physiotherapy alone. But many docs prescribe

it without reason because it is standard. The Vest is only necessary if you

have mucus in the lung. But many docs prescribe it without reason because it

is standard.

So maybe a good inhalation of TOBI might work for those with light growth of

pseudomonas and no problems with mucus production. My point is, if you think

that a treatment is unnecessary, ask your doc why it is prescribed. Fiona

inhaled Albuterol for almost one year until we found out that the doc didn't

think it is necessary but would like to cling to the standard. We skipped it

the other day for good.

Peace

Torsten, dad of Fiona 6wcf and Sebastian 5months wocf

e-mail: torstenkrafft@...