Re: Angie and Everyone - EMERGENCY

[Guest guest]

Hello Angie and all RP members I hope you all are doing fine today. The

doctors were able to inject the steroids into his throat but unfortunately

while they were there they found that the RP has progressed down into his

trac. They kept him in the hospital and put him back on oxygen along with

the humidifier compressor. Cyrus diagnoses doesn't look to good a this

moment. The Pulmonary specialist is supposed to come in to the hospital

today and see what he can do or if he might have some suggestions. My husband

and I made a decision not to tell Cyrus about the disease going into his trac

only because we don't think he can handle it right now and we don't won't him

to have the stress to deal with. I am not holding up to well as a matter of

fact not at all I have been praying and crying all nite.

I have even spoken to God and I told him I'm a little upset with him right

now but I still will continue to Praise his name because I know he's still in

control but boy is it hard.

If you have any info on this disease affecting the trac area or if one of the

members has a trac and experience this problem PLEASE mail ASAP /

lOVE Gail McClary and Family

[Guest guest]

Gail,

Cyrus is in all of our prayers and so are you and your family.

B. CT

[Guest guest]

Dear Gail- My husband Pete has RP..he does not have trach involvement but

there are folks in the grioup that do and I'm sure you will hear from

them....I just wanted you to know that Cyrus is in our prayers...I also need

to say that I am an RN and I know health care isn't what it should be so be

as aggressive as you have to be to get Cyrus all the help he needs and is

intitled to. Love Janet

[Guest guest]

Dear, Gail, much pray is given for your Cyrus and you and your family. Love

and God Bless, Ronnie

In a message dated 2/17/2000 5:36:29 AM Pacific Standard Time, Grfm@...

writes:

<< Hello Angie and all RP members I hope you all are doing fine today. The

doctors were able to inject the steroids into his throat but unfortunately

while they were there they found that the RP has progressed down into his

trac. They kept him in the hospital and put him back on oxygen along with

the humidifier compressor. Cyrus diagnoses doesn't look to good a this

moment. The Pulmonary specialist is supposed to come in to the hospital

today and see what he can do or if he might have some suggestions. My

husband

and I made a decision not to tell Cyrus about the disease going into his

trac

only because we don't think he can handle it right now and we don't won't

him

to have the stress to deal with. I am not holding up to well as a matter of

fact not at all I have been praying and crying all nite.

I have even spoken to God and I told him I'm a little upset with him right

now but I still will continue to Praise his name because I know he's still

in

control but boy is it hard.

If you have any info on this disease affecting the trac area or if one of

the

members has a trac and experience this problem PLEASE mail ASAP /

lOVE Gail McClary and Family

>>

[Guest guest]

Dear Gail. I cannot help with any information, but I

would like you toknow that you and Cyrus, and the rest

of your family are in my prayers(and I am sure

everyone elses) during this time of crisis. Try to

keep positive, although it must be hard. Love Liz

, - Grfm@... wrote:

> Hello Angie and all RP members I hope you all are

> doing fine today. The

> doctors were able to inject the steroids into his

> throat but unfortunately

> while they were there they found that the RP has

> progressed down into his

> trac. They kept him in the hospital and put him

> back on oxygen along with

> the humidifier compressor. Cyrus diagnoses doesn't

> look to good a this

> moment. The Pulmonary specialist is supposed to

> come in to the hospital

> today and see what he can do or if he might have

> some suggestions. My husband

> and I made a decision not to tell Cyrus about the

> disease going into his trac

> only because we don't think he can handle it right

> now and we don't won't him

> to have the stress to deal with. I am not holding

> up to well as a matter of

> fact not at all I have been praying and crying all

> nite.

>

> I have even spoken to God and I told him I'm a

> little upset with him right

> now but I still will continue to Praise his name

> because I know he's still in

> control but boy is it hard.

>

> If you have any info on this disease affecting the

> trac area or if one of the

> members has a trac and experience this problem

> PLEASE mail ASAP /

>

> lOVE Gail McClary and Family

>

__________________________________________________

[Guest guest]

thank you for your prayers. They are gonna try and wake Cyrus up later

today around 6 and if he can breath on his own they will unplug the

respirator.

Keep praying.

God Bless you Gail McClary

[Guest guest]

Liz , God Bless you also for your prayers keeping praying for us and with us

and I know God will answer our prayers.

Thank you very much.

God Bless

Gail McClary

[Guest guest]

Ronniegirl, May God continue blessing you thank you for all your prayers and

good wishes.

God Bless

Gail McClary

[Guest guest]

In a message dated 2/17/00 4:13:55 PM Central Standard Time, Grfm@...

writes:

<< gonna try and wake Cyrus up later

today around 6 and if he can breath on his own they will unplug the

respirator. >>

All I can say Gail, Is Please try to keep the Faith! The good Loard will take

care of Cyrus, I am so upset about this and so is my husband!

I know we never meet you, but you are a part of us!

Love,

P

[Guest guest]

Gail, please let us know. I will be away and not be online for a few days.

You and Cyrus are most definitely in my thoughts and prayers. Love and God

Bless, Ronnie

In a message dated 2/17/2000 2:13:54 PM Pacific Standard Time, Grfm@...

writes:

<< They are gonna try and wake Cyrus up later

today around 6 and if he can breath on his own they will unplug the

respirator. >>

[Guest guest]

Hi!

I´m sorry to hear the news.

I got the first symptons in 1982, when I was 27. I had difficulties with my

throat - lost almost my voice and it was harder to get air. It took 9 months to

get the dx -RP, and during those moths my throat got permanently(?) damaged.

Actually I´m not sure, is throat, larynx or upper part of trach the right word.

But anyhow, the upper part of my airway was so narrow, that the docs recommended

a trach tube. I was against it for two yrs, but had to say yes, because I had

difficulties to be awake. With the trach tube I got rid of that (+ got something

less positive).

Do you know what part of Cyrus´ trach is damaged ? Have your docs ever mentioned

a trach tube for him?

Hopefully it´s only a temporary flare up, but if tracheastomy is needed, it´s

not

the end of the world and it can be temporary, too.

All the best to all of you.

Arto

PS. I have again difficulties to be awake, now because of Thalidomide. After

taking a pill I had better to go to bed. Now I have been writing this for two

hrs, hopefully there is some sense

>

[Guest guest]

Gail I am so sorry the news isn't too good for Cyrus. please don't give up!

unfortunately I do not have info on that in fact I am looking for it myself

since my Rp is trachea involved here is hoping the pulmon. can come up with

something positive for him please take care of yourself. I know it is hard

but know in yur heart that we are all here for you and praying like mad.

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

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because you stopped laughing.

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[Guest guest]

Gail:

I'm so sorry to hear of all the difficulty Cyrus is having. I don't

have experience with what he is going through, but my pulminologist went

to Yale and worked with RP patients with severe respiratory problems,

stents etc. His name is Dr. Silverstein. He is is St.

sburg, Florida. I know you can't get to see him but maybe your

doctors there could call him and find out what his experience is. Dr.

Silverstein is an exceptional doctor who has taken a keen interest in my

welfare and keeping me well. I'm sure he would be glad to talk with

your doctors if they call and tell him how severe his problem is. Dr.

Silverstein's office number is

(727)525-4066. If your docs don't know exactly what they are doing,

plead with them to consult with ones who do. They need to swallow their

pride at times like this and think only of the patient.

We are all praying for Cyrus and that he turns the corner and starts his

recovery. Please let us know if there is anything we can do to help!

Hang in there!!

Grfm@... wrote:

> From: Grfm@...

>

> thank you for your prayers. They are gonna try and wake Cyrus

> up later

> today around 6 and if he can breath on his own they will unplug the

> respirator.

>

> Keep praying.

>

> God Bless you Gail McClary

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

> [

[Guest guest]

Arto the med is really making you that tired? Gee that is no way to live and

have a happy retirement. how is that coming along?

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************

[Guest guest]

God be with you all

Nancie

--- Grfm@... wrote:

> thank you for your prayers. They are gonna

> try and wake Cyrus up later

> today around 6 and if he can breath on his own they

> will unplug the

> respirator.

>

> Keep praying.

>

> God Bless you Gail McClary

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

Hi Angie!

Now I take only one pill, in the evening, so daytime should become quite normal.

And later even the evening dose may get lower.

I hope this is just temporary.

Going to the country for a couple of days.

Have a nice weekend. Hyvää viikonloppua.

Arto

>

[Guest guest]

Arto:

Hope you have a restful and peaceful weekend! (at least it sounds like

getting rest right now is pretty each huh). Hope your dosage adjustment

makes it easier to stay awake.

Hope you are enjoying your retirement.

Take care,

Arto Toikka wrote:

>

>

> Hi Angie!

>

> Now I take only one pill, in the evening, so daytime should become

> quite normal.

> And later even the evening dose may get lower.

> I hope this is just temporary.

> Going to the country for a couple of days.

> Have a nice weekend. Hyvää viikonloppua.

>

> Arto

>

> >

>

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

> [

[Guest guest]

In a message dated 02/18/2000 4:55:58 AM Central Standard Time,

Arto.Toikka@... writes:

<< Going to the country for a couple of days.

Have a nice weekend. Hyvää viikonloppua.

Arto

>>

Hi Arto,

You sound like you just love life!!! I bet your a fun person to be around.

Enjoy your weekend!

Love ya!

LU

[Guest guest]

Dear Gail,

i was so sorry to hear about the news o cyrus. i do't know if this will

help and don't want to give you fale hope, but two yearsago in the

hospital heyput in a trach. my windpipe was als involved. upon

discharge they said in the discharge summary that they suspected that i

would always have keep the trach. i got it out much to their surpri`e

9 months later. yes i now have a lot of scar tissue built aroud that

area. but te doctors could not explain effictely how i could even be off

of it. and my PCP called itnothing but miracle. i informed him that i

had a lot of people praying for me. he said it had to be something, he

sis not have medical reaoning o explain my good fortune.

i don't believe god does tis illnes to anyone, but rather believe in a

god who will help me deal with life on life terms a day at a time if i

ask Him. i will pray tht he will give you this strenght. my heart goes

out to you and your famly.

sincerely, denise

[Guest guest]

Arto enjoy yourself!!!! have a rlaxing time and when you get back and feel

refreshed drop me a note I want to ask you something

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************