Re: (unknown)

[Guest guest]

,

I am so happy for you that you are chosing this gift of life. I can't blame

you for being nervous. I have three little boys that I want to watch grow up

and see them have there own little babies. (I tell them that they each have

to have a daughter and name them --- drives them wild!!!!) I will keep

you in my prayers, you are in God's hands; he just borrows Dr.R.

[Guest guest]

Kecia,

Congradulations and Good Luck! Who in the world was your insurance

co?????? WOW Cool! Margie SC hopeful

[Guest guest]

In a message dated 3/22/00 8:25:41 AM Eastern Standard Time,

keciacrn@... writes:

<< hello,i've been approved--took my insurance co 2

days!!- >>

Kecia!!! CONGRATULATIONS!!! I am soooooooooo jealous of you with your

insurance company!!

{{HUGS}}

in FL

Redheaded MGB Hopeful

Clinic 4/29/00, 9:00 AM

BMI 51

" He who began a good work in you will be faithful to complete it until the

day of Christ Jesus. " - Phil. 1:6

[Guest guest]

Dear Kecia, What is the name of your insurance?? Would you give that

complete information and say that it took them 2 days to approve? I need it

to print out to give to my lawyer. She keeps a list of all the insurances

from this list that get approved to have for us to show in court that many

many insurances companys DO approve of this surgery and more all the time.

Thanks,

[Guest guest]

What insurance company do you have??????????????????????

>>> sMama2@... 03/22/00 09:28AM >>>

From: sMama2@...

In a message dated 3/22/00 8:25:41 AM Eastern Standard Time,

keciacrn@... writes:

<< hello,i've been approved--took my insurance co 2

days!!- >>

Kecia!!! CONGRATULATIONS!!! I am soooooooooo jealous of you with your

insurance company!!

{{HUGS}}

in FL

Redheaded MGB Hopeful

Clinic 4/29/00, 9:00 AM

BMI 51

" He who began a good work in you will be faithful to complete it until the

day of Christ Jesus. " - Phil. 1:6

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[Guest guest]

In a message dated 03/22/2000 2:24:47 PM Eastern Standard Time,

Deckbound@... writes:

<< From: Deckbound@...

Dear Kecia, What is the name of your insurance?? Would you give that

complete information and say that it took them 2 days to approve? I need it

to print out to give to my lawyer. She keeps a list of all the insurances

from this list that get approved to have for us to show in court that many

many insurances companys DO approve of this surgery and more all the time.

Thanks,

>>

,

Do you have that list of insurance co. that approve the MGB surgery?? deeply

appreciate it! Thanks! Margie SC HOPEFUL

[Guest guest]

Well my lawyer keeps the email of all the insurance companies that have said

they will pay for the surgeries of people on this list. Anyway the ones that

report that they have been pre approved. I have not kept the list, I simply

forward the emails to my lawyer and she puts them in my file. But I would

think Dr Rutledge or Debbie would have a list of the ins companies that do

pay. I remember that Tricare is one (use to be Champus) and lots of the Blue

Cross, Blue Shield ins companies. in Missouri

[Guest guest]

Carol, You are in my prayers. Keep us updated. Love and

Prayers, Lucy

Tammy Fee wrote:

Carol,

Hi Tammy Fee here. Have your doctors talked about having a greenfield filter

to put ot collect any clots that might travel? I am not sure exactly how

they work, but it might be an option. I hate for you to feel so afraid

and I understand what you mean. I will pray for you. Take care. Tammy

Fee

-----Original

Message-----

To: Rpolychondritisegroups

<Rpolychondritisegroups>

Date: Saturday, July 15, 2000

5:44 AM

Subject:

(unknown)Sorry I missed the chat last night. Welcome

to all the new members!

There is some peace in knowing you're not alone and this site has

provided a wealth of information for RPers. I have been dealing

with

a small blood clot (pulmonary embolism) in my lung this week.

It was

discovered during a routine CAT scan on Monday. It is suspected

that

it came from my legs, where I have had a vein infection since May.

According to my Rheumy, the RP caused the infection in the veins

(still can't quite understand that), and he started me on Imuran

in

May. So this week, the docs are trying to thin my blood with

Coumadin and I have had to learn how to give myself injections

of

Fragmin (this apparently makes the blood "slippery" so that the

clot

doesn't get any bigger. It is amazing the things one can adapt

to if

it's needed. I am about as far away from being a nurse as

you can

get! The risk is that the clot will move. This would

cause extreme

chest pain and shortness of breath and requires hospitalization.

At

this point I am stable, it is a small clot, and other than being

tired and somewhat frightened by the whole situation, am doing

ok. I

do have a lot of questions for the doc, whom I see on Wed. next

week.

Will try to keep the group updated. Carol.

There is strength in numbers and together we can cope and help others.

There is strength in numbers

and together we can cope and help others.

[Guest guest]

Carol,

Hi Tammy Fee here. Have your doctors talked about having a greenfield filter to put ot collect any clots that might travel? I am not sure exactly how they work, but it might be an option. I hate for you to feel so afraid and I understand what you mean. I will pray for you. Take care. Tammy Fee

(unknown)Sorry I missed the chat last night. Welcome to all the new members! There is some peace in knowing you're not alone and this site has provided a wealth of information for RPers. I have been dealing with a small blood clot (pulmonary embolism) in my lung this week. It was discovered during a routine CAT scan on Monday. It is suspected that it came from my legs, where I have had a vein infection since May. According to my Rheumy, the RP caused the infection in the veins (still can't quite understand that), and he started me on Imuran in May. So this week, the docs are trying to thin my blood with Coumadin and I have had to learn how to give myself injections of Fragmin (this apparently makes the blood " slippery " so that the clot doesn't get any bigger. It is amazing the things one can adapt to if it's needed. I am about as far away from being a nurse as you can get! The risk is that the clot will move. This would cause extreme chest pain and shortness of breath and requires hospitalization. At this point I am stable, it is a small clot, and other than being tired and somewhat frightened by the whole situation, am doing ok. I do have a lot of questions for the doc, whom I see on Wed. next week. Will try to keep the group updated. Carol.There is strength in numbers and together we can cope and help others.

[Guest guest]

Tammy--am not sure what a greenfield filter is, but will ask. Thanks. Carol.

[Guest guest]

A Greenfield filter is also known as an " umbrella, " is placed above (or

below) the site of a clot to prevent it from " traveling " farther into other

areas, possibly clogging them and causing stoppage of blood flow. The

" filter " part of the name should clue us to the fact that it filters the

non-clotted blood through allowing it to properly flow.

Thank you.

Spring.

Peace and Love

[Guest guest]

Hi ,

I'm pretty lucky the RP is only in the exterior cart. so far.

Ears,nose,wrist,elbow,knees,and back. Someone came over this weekend and

they had a cold. I'm on imuran so guess who has a full blown cold. I hate

it. I refuse to live in a bubble to keep away from people so I don't get

sick.

I am going to rest today so that I can go to work at 1600. Talk to you

soon.

Glenda

Luv U Lots

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

On Sun, 20 Aug 2000 19:53:06 CDT, Rpolychondritisegroups wrote:

> Glenda

> Hi It was nice to get a response from you. Im fairly new, i joined back

in

> Oct'99- somehere around this time. The disease almost got the best of

me.

> I have a trach and a broncial stent in my right lung. I am doing so much

> better now. My problem was being with inexperienced doctors. My flares

> started in my trach. My airway was affected immediately. I know this is

a

> very rare disease, but i know, if i had the doctors that a have now, when

i

> first started getting sick i know i would be in better condition than i

am

> in now. But i thank God that i have them now. I just wanted to tell you

a

> little about myself and once again welcome you to the group.

>

> Take Care

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Glenda thank you for listening. I have had RP for 3yrs. I am 26yrs old. I have a trach(not permanent), i have a stent in my airway and a right bronchi stem stent. I am feeling just fine now. But about weeks ago i was not feeling so well. This disease has no since of time. I try and see if there are cycles of when i have the rib pain, or when my ear decides it wants to hurt or my eyes. But there is no cycle. I was just feeling down from that. I am doing much better now. Thank you for you concern. I will keep you in my thoughts and prayers as i do everyone here.

Love

Re: (unknown)

,Never worry about ranting. That is what this group is for. That's why Ilike it. These people all know what we are going through. It sounds likeyou are having a time of it right now. That's what I have about this RP.Either you feel great or you are really sick. It seems that there is no inbetween. Keep your chin up. You are going to get better.I came down with a cold Sun. night and the way I sound I've had it a week. I take imuran and with a suppressed immune system it seems to just getworse. If it's not the RP it's the meds you take. My husband asked if Iwas going to the dr. I told him no because he wont perscribe anything untilI get an infection. I have just been resting and my house looks it. I hadto go to work last night due to there was no one to fill in for me. I'vebeen through a lot rougher times and that is what gets me by now. Enough onme.How long have you had RP? You are in my prays.GlendaLuvs you>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>On Mon, 21 Aug 2000 18:08:03 CDT, Rpolychondritisegroups wrote:> Glenda,> > I went to the doctor about 3weeks ago and I had some build up in my left > lung, with the stent. He is a good pulmonary doctor, he gave me some > albuterol, mucuomyst mixture and augmenton-antibiotic, and it has helped.> He told me that if he didn't know my case he would think that i had > pnuemonia. He put me on the antibioic just in case something wasstirring. > He was asking me if i had been running fevers, i hadnt. The only thing i> can say now since ive been doing the B-treatments my coughing hasdecreased > a lot. I'll stop ranting. Hope you had a good day.> > love veronica> ________________________________________________________________________> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com>_______________________________________________________Say Bye to Slow Internet!http://www.home.com/xinbox/signup.htmlDISCLAIMER!!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]

Dear Markie,

I am so sorry to hear about your parents. I just lost my mother unexpectedly

at Christmas time, so I am painfully aware of the emotions that evokes. I

am glad you understand about the church thing. But it is still hard. I

understand where you are coming from. Our children (24 and 21) are close,

but our extended family is scattered. How I am learning the goodness of

staying close to them! I am so glad to know you and am looking forward to

getting acquainted. Keep the faith!

Be well,

[Guest guest]

Torsten, I posted a letter I received from Shirley

this morning and she asked me to pass on the info,

That was EMMA. She also had a very bad rash.red

bumps. Her mum explains in my post. I will resend

to CFParents also. She asked me to send indo so I

guess it is o.k. for all lists. Thanks again,

LOVE, grandmomBEV

(unknown)

Hi,

I don't know whether I am doing this right, but I

just got notice that

a girl from Northern Ireland died a few weeks ago

at the young age of

13. Her mom was a short-time member of this list

last year and

apparently Emma did not die from CF-complications,

but from a throat

infection, that went into her bloodstream.

A candle will burn tonight in Germany.

Torsten

> Hi there,

>

> My name is Shirley, I live in Northern Ireland

and I have a 13 year

old daughter (Emma) with Cystic Fibrosis. Emma

was diagnosed at 10

weeks old from the heel prick test which was

backed up by a sweat test

soon afterwards.

>

> Emma keeps fairly well and hasn't had very many

chest infections.

She keeps herself fit through horseriding which

she is passionate

about.

>

> I'm finding it increasingly difficult to get her

to do her physio

and her nebulisers. Since she became a teenager

she just rebels

against it all. Has anyone else experienced this

problem?

>

> Shirley

>

>

>

>

>

>

> [Non-text portions of this message have been

removed]

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]

Torsten, I posted a letter I received from Shirley

this morning and she asked me to pass on the info,

That was EMMA. She also had a very bad rash.red

bumps. Her mum explains in my post. I will resend

to CFParents also. She asked me to send indo so I

guess it is o.k. for all lists. Thanks again,

LOVE, grandmomBEV

(unknown)

Hi,

I don't know whether I am doing this right, but I

just got notice that

a girl from Northern Ireland died a few weeks ago

at the young age of

13. Her mom was a short-time member of this list

last year and

apparently Emma did not die from CF-complications,

but from a throat

infection, that went into her bloodstream.

A candle will burn tonight in Germany.

Torsten

> Hi there,

>

> My name is Shirley, I live in Northern Ireland

and I have a 13 year

old daughter (Emma) with Cystic Fibrosis. Emma

was diagnosed at 10

weeks old from the heel prick test which was

backed up by a sweat test

soon afterwards.

>

> Emma keeps fairly well and hasn't had very many

chest infections.

She keeps herself fit through horseriding which

she is passionate

about.

>

> I'm finding it increasingly difficult to get her

to do her physio

and her nebulisers. Since she became a teenager

she just rebels

against it all. Has anyone else experienced this

problem?

>

> Shirley

>

>

>

>

>

>

> [Non-text portions of this message have been

removed]

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]

Torsten, I posted a letter I received from Shirley

this morning and she asked me to pass on the info,

That was EMMA. She also had a very bad rash.red

bumps. Her mum explains in my post. I will resend

to CFParents also. She asked me to send indo so I

guess it is o.k. for all lists. Thanks again,

LOVE, grandmomBEV

(unknown)

Hi,

I don't know whether I am doing this right, but I

just got notice that

a girl from Northern Ireland died a few weeks ago

at the young age of

13. Her mom was a short-time member of this list

last year and

apparently Emma did not die from CF-complications,

but from a throat

infection, that went into her bloodstream.

A candle will burn tonight in Germany.

Torsten

> Hi there,

>

> My name is Shirley, I live in Northern Ireland

and I have a 13 year

old daughter (Emma) with Cystic Fibrosis. Emma

was diagnosed at 10

weeks old from the heel prick test which was

backed up by a sweat test

soon afterwards.

>

> Emma keeps fairly well and hasn't had very many

chest infections.

She keeps herself fit through horseriding which

she is passionate

about.

>

> I'm finding it increasingly difficult to get her

to do her physio

and her nebulisers. Since she became a teenager

she just rebels

against it all. Has anyone else experienced this

problem?

>

> Shirley

>

>

>

>

>

>

> [Non-text portions of this message have been

removed]

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]

; if you pull youjr name off the list, you will not be able to post to

us

regarding 's condition, nor any other matters, because if you

unsubscribe from Yahoo, it will take you a decade to get back on. Why not

just become a lurker with an active delete finger; it only takes two moves;

delete all and permanently delete all--oh, gosh, probably being too nosy.

Sorry, but to get off the list, got to Yahoogroups, find cfparents and unsign

yourself if you must! We will miss you,

n Rojas

[Guest guest]

; if you pull youjr name off the list, you will not be able to post to

us

regarding 's condition, nor any other matters, because if you

unsubscribe from Yahoo, it will take you a decade to get back on. Why not

just become a lurker with an active delete finger; it only takes two moves;

delete all and permanently delete all--oh, gosh, probably being too nosy.

Sorry, but to get off the list, got to Yahoogroups, find cfparents and unsign

yourself if you must! We will miss you,

n Rojas

[Guest guest]

; if you pull youjr name off the list, you will not be able to post to

us

regarding 's condition, nor any other matters, because if you

unsubscribe from Yahoo, it will take you a decade to get back on. Why not

just become a lurker with an active delete finger; it only takes two moves;

delete all and permanently delete all--oh, gosh, probably being too nosy.

Sorry, but to get off the list, got to Yahoogroups, find cfparents and unsign

yourself if you must! We will miss you,

n Rojas

[Guest guest]

oopps, just realized you have hotmail, this account will not accept hotmail

due to smut mail from hotmail addies in the past. If you need to reach me,

email me at touchedbycf@...

Take care

Jen

Mommy of 7, including ph 22 months with CF, Mallory 3 with CF, RAD, GERD,

OSA, port-a-cath; 5 with CF, port-a-cath; 6, Miranda 9,

Brittany 8 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon

to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us

also ; also aunt to 4 yo with CF

[Guest guest]

oopps, just realized you have hotmail, this account will not accept hotmail

due to smut mail from hotmail addies in the past. If you need to reach me,

email me at touchedbycf@...

Take care

Jen

Mommy of 7, including ph 22 months with CF, Mallory 3 with CF, RAD, GERD,

OSA, port-a-cath; 5 with CF, port-a-cath; 6, Miranda 9,

Brittany 8 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon

to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us

also ; also aunt to 4 yo with CF

[Guest guest]

Welcome, and family; this list is so good because people like you

join us!

Welcome to the whole family from your new cyber-family!

n Rojas, 63, wcf, mom of 3 adults, the youngest with cf also; they have

probably lived longer than my parents thought that I would! They are : 40.

37.5 and 35--all Women, with careers, spouses, houses--amazing! They have

done well.

[Guest guest]

Hi ,

It is nice to meet you. Welcome to the list, I hope you find it helpful and

supportive (we try). Myself, I have 2 teens, age 17 wcf, and Nick

age 19 no cf. is doing pretty well, she is scheduled for sinus

surgery for July 25, but I just found out we are getting new insurance so it

might delay the surgery a little. I hope not. And on Monday she is leaving

for Paris, a school trip with her German club. She'll be traveling around

Europe for 17 days. Sounds like fun?!

with love from from Orange Ca

[Guest guest]

BEST wishes on the trip -Take care . Holding you in my prayers always..

LOVE, grandmomBEV

Take pictures------------:) DUH!!

Re: (unknown)

Hi ,

It is nice to meet you. Welcome to the list, I hope you find it helpful and

supportive (we try). Myself, I have 2 teens, age 17 wcf, and Nick

age 19 no cf. is doing pretty well, she is scheduled for sinus

surgery for July 25, but I just found out we are getting new insurance so it

might delay the surgery a little. I hope not. And on Monday she is leaving

for Paris, a school trip with her German club. She'll be traveling around

Europe for 17 days. Sounds like fun?!

with love from from Orange Ca

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.

--------------------------------------------------