Update

May 16, 2001

In a message dated 5/16/01 6:07:32 PM Pacific Daylight Time,

susuw@... writes:

<< Guess I need to sharpen the points on my pointy shoes, huh? >>

Yep susan, I'm gonna go get me a NEW pair!!! And this New year will just

start in JUNE!!!

hugs

May 16, 2001

,

Bless your heart, when it rains it pours. Did they at least say how long it

would be before the test results came back??

My daughter had mono and I know how bad they can feel from that.

You sure have your hands full girl. I pray you get some peace soon from all

your worries. God knows, you deserve it.

Please let us know when you find out what's wrong with . I will be

saying special prayers for you in the mean time.

If you need me , I'm here, OK?

W

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

They dont know what's wrong with . Are

testing her for lymphoma and mono. Told her to take motrin and use heat on

all the swollen glands. If she isn't better in 2-3 WEEKS to come back.

Sorry, i'm not waiting 2-3 weeks.

May 16, 2001

YES WE ARE!!!! Love your attitude . You are something else.

But weren't we suppose to kick RP out the door this year??????? LOL

Guess I need to sharpen the points on my pointy shoes, huh?

W

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

Hey, we were all going to kick this RP out the door in jan 2001......Well I

just feel it ....and June 1st will be the start for all good things..!! The

next 6 months will be as good as the last 6 months were bad. LOL

May 16, 2001

,

Did go to the ER.? What's with these doctors?

So are you going back on the Imuran?

I'll take some of that heat if you would like to share. LOL

We had a high of 60 and drizzle all day.

Hugs,

Sandy

> Well guys, I'm home again.... They dont know what's wrong with .

Are

> testing her for lymphoma and mono. Told her to take motrin and use heat

on

> all the swollen glands. If she isn't better in 2-3 WEEKS to come back.

> Sorry, i'm not waiting 2-3 weeks. Poor thing, she is in so much pain.

> Didn't say much about the menengitis. Guess the nurse was out of place to

> tell her that. Her neck is so stiff though. This dr she saw was in a

real

> hurry. I tried my best to get answers and couldn't. Will see what the

> blood tests show. Maybe just a virus or some weird thing.

>

> My PCp's nurse called me and told me that the dr wanted me to go up on my

> Imuran to 100mg......?????? HE took me off of it about a month ago!!!

> Asked if I should start over on 50mg and she didn't have a clue...said she

> would call me back. Still haven't heard.

>

> As you can tell, I've pretty much had it today with drs. LOL Rich has

been

> sleeping all day, don't know if it's from the meds or the depression. Dr.

> changed his meds again this morning. Geez......I just know things will

get

> back to some kind of normal soon. LOL

>

> It is hot and windy here today. If I had the energy, I'd go work in the

> yard, might still. But with the water rationing, I have to wait till

after

> 6pm and can only water on M, W, and Fridays. LOL Between the rolling

black

> outs and the water problems, can't wait til summer. LOL

>

> Hope everyone is having a good day... I just know each day will get better

> for us from today on...)))

>

> hugs to you all

>

> 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

>

May 16, 2001

Well, you can just bring those pointy shoes to my house and give this old RP

a good kick in the " you know where " .

Sandy

> In a message dated 5/16/01 6:07:32 PM Pacific Daylight Time,

> susuw@... writes:

>

> << Guess I need to sharpen the points on my pointy shoes, huh? >>

> Yep susan, I'm gonna go get me a NEW pair!!! And this New year will just

> start in JUNE!!!

>

> hugs

>

> 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

>

May 17, 2001

Gad you are having a hell of a time. I would take someplace

else. Damn doctors. When are you suppose to get tests back?

I'm so sorry you are going through such a bad time. Some days its just best

to get outside and escape from reality for awhile. Yesterday was such a nice

day I sat on the deck " nude " and soaked up rays. Luckily no one can see me or

the neighbors would think I was a beached whale. Dermy told me to get sun.

You take care of YOU....Sue

May 17, 2001

,

Tell and Rich that they are in my thoughts and prayers. For you I am

sending extra prayers. Please take care of yourself and don't let all this get

you down. I know it is hard but I am right there pulling with you!

Take Care!

Lots of Love

Glenda

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July 10, 2001

I am so sorry about your accident. I hope everything goes well with

you.

Sheila

> Hello Group,

>

> I wanted to update everyone on what is happening in my life and my

> future research plans. Everything has been placed on hold for the

> last month and a half. I was in a bad accident in mid-May. I

> fractured my right forearm, damaged my elbow joint, and re-injured

my

> right rotator cuff. I have not told many people because I was

hoping

> to be fixed after my first surgery. I was not. I have been laid

up

> this entire time. I have my second surgery tomorrow, July 10th. I

> will be in a full arm cast for four to five weeks but should be

back

> to new after some rehab. My wife has been trying her best to reply

> to all of the emails, but has fallen behind. Now she is just

saving

> all of the emails for me to answer once I am well again.

>

> Before I was injured, Pascoe and I were trying our best to

set

> up two different chat rooms for rosacea sufferers (one time for

> sufferers in the US and another time for international sufferers in

> different time zones). We will resume this once I have started

> rehab. We are both open to suggestions about the best chat room

> locations and times to conduct the discussions.

>

> I have been in close contact with two laser physicians who are

> considering writing a major journal article about the medical

> necessity of laser treatment for moderate to severe rosacea

sufferers

> or patients with severe facial flushing and skin burning

sensations.

> This medical article could be extremely helpful in getting

insurance

> companies to cover or reimburse laser therapy. These physicians

have

> stressed two concerns though. First, they are private practice

> physicians who don't have experience in writing major medical

journal

> articles. Second, they are concerned about alienating other laser

> practitioners because right now laser treatment is paid directly

out

> of the pockets of rosacea sufferers (versus the hassles that

> physicians have to go through to get money from insurance

companies).

> In order to help make sure that this article gets published, I have

> sent them dozens of medical articles on rosacea flushing and

burning

> sensations. I have also offered to help write most of the article

to

> take pressure off of them. I have tried to make them understand

that

> rosacea sufferers desperately need this type of medical article.

> Hopefully this will come to fruition.

>

> I have also recruited two physicians (and possibly a third one) to

> test topical nitric oxide inhibitors on rosacea sufferers. These

> physicians would then write articles about the effectiveness and

> safety of these topical medications in the treatment of rosacea

> symptoms. If there are no adverse reactions then these physicians

> would continue to treat patients under close supervision. We do

not

> need to wait 6 to 7 years for FDA approval and pharmaceutical

> companies to develop these products. We can start treatment and

> research tomorrow. The only problem is that Sigma Chemicals, the

> only company that makes medical grade nitric oxide inhibitors

(LNMMA

> & LNAME), only sells this blocker to biomedical research

scientists.

> So, I am trying to figure out how to get these substances from my

lab

> to the physicians. It has to be bought through my grant money and

> usage is closely monitored. We will figure a way around this once

I

> go back to work. I am also going to figure out how to make

neuronal

> nitric oxide blockers available for testing and treatment. They

are

> quite insoluble and only dissolve in special alcohol mixtures. Two

> new neuronal blockers have recently been developed that are more

> soluble. We shall soon see.

>

> Once I am better, I am going to become quite active again on the

> Internet, re-join various support groups, add lots of information

to

> my web site, and start my quarterly newsletter. The first thing

that

> I am going to do is set up a page on my web site to gather

signatures

> (names) of rosacea sufferers to support Pascoe. I am

> nominating him to be on the NRS Grant Committee as an independent

> rosacea sufferer to relay our appreciation for the current

research,

> our many concerns, and our future hopes. This is a way that we can

> use 's support group (i.e. you guys) constructively to make a

> difference. We are the ones who have given the NRS 90% of their

> grant money, so we should have some influence or say in the

research

> to be funded. I would like to gather at least 5,000 names and will

> submit a letter of nomination to the Grant Board. We can make a

> difference.

>

> Lastly, I would like to thank everyone who purchased my book for

> supporting my research. It really does make a huge difference in

how

> I can devote my time and energy. I would also like to relay that

all

> of the beginning kinks in shipping have been smoothed out. I will

> also be adding our shipper's toll-free number to my web site for

> anyone who has questions about delivery (1-, Tim Urda).

>

> Talk to everyone soon,

>

> Geoffrey

>

> =================

>

> Dr. Geoffrey Nase

> Ph.D. Microvascular Physiologist

May 25, 2002

Karyn,

Hang in there. You are in allot of peoples prayers.

Joy

update

Hello to all,

I am still having a hard time, but am checking in as I can. I am still not up

to answering all my mail. I apologise.

Thank you for all of your hard work. Thank you, too, for your thoughts.

Karyn

Karyn E. , RN

Founder / President

Pancreatitis Association Intl.

KarynWms@.../

3rd Annual International Symposium on Pancreatitis

http://www.pancassociation.org/symposium.html

July 31, 2002

Hi Cheryl,

somehow Yahoo snipped off your name from the signature :-((

Great to hear that Jake is doing so well overall, at least until June.

At the very beginning we alternated labs from the clinic and from our

ped. Three times the ped's lab cultured for only 48 hours because " we

have always done it this way and won't change it for a child with

CF " . Three times they found nothing. On the other hand the clinic's

lab cultured the throat swabs for at least one week. Three times they

found staph and once h.flu. After that we were convinced that

cultures have to grow for a week to get proper results.

Contamination of cultures has been reported by others in the past, I

think it has never happened to us. A mix-up would be a bad mistake, I

hope there is another explanation for Jake's changing lab results.

Nice to have seen a message from you after a long time, please keep

us updated.

Peace

Torsten

> Hi, I hope everyone has been having a better summer than

me. I feel

> totally stressed out, and ready to explode. I hope some of your

words of

> wisdom will help. So far, my son Jake -w/cf has been in pretty

good

> health. He is an active crazy 2 1/2 year old, and never stops for

a second.

> He only coughs when he has a cold, which isn't that often, and he

is in the

> 50% percentile for weight, and 75% percentile for height. He is

such a

> pleasure and his smile brightens up my whole day. I love him too

much!

>

> Anyways, in June he caught bronchitus from me. And in July-

it showed

> he cultured pseudomonas for the first time. And after his first

TOBI

> inhalations, he cultured -MRSA, and Ecoli? , not

psuedomonas????? I

> wonder if they could get labs mixed up/and /or contaminated them.

Anyways,

> he just went in for a hernia operation a week after the last sputum

positive

> tests, and the results aren't in. (so they tell me, I don't

believe them-it

> was done last Thursday in the operating room)

> But, The nurse at the hospital told us the samples were not

growing anything

> after 48 hours. So why can't the dr's office tell us anything now,

a week

> later?

>

> Anyways, during his procedure, they inserted a PIC line. And

> currently he is on IV meds. (TOBI, and maxipine [at the hospital

they gave

> him 5 doses of vancomycin.)

>

> My question, how long does hospital's let the bacteria

grow? Does

> anyone have any experience with messed up labs, and any other

comments of

> support or advice?

>

> thanks,

August 1, 2002

HI, I too wonder about the labs. They usually take 3-7 days to grow staph

bacteria. When Traci was in the hosp. in December '01 she cultured for MRSA,

Last week she went in again and the labs came back with no staph bacteria at

all. She ALWAYS cultures for psuedomones. Traci is not a cougher either. We

always have to do a throat swab, unless she is under, and that hasn't been

for two and a half years. She is on Tobra and Cefepime IV now.

We only go in the hosp. for 3 days to get a Tobra level and then come home on

IVs. I hate being around all the sick kids. Traci has to stay in her room

since she cultered MRSA and that is like prison. Much more relaxed at home.

Lynette

Mom to Traci 7w/cf and 11w/ocf

May 26, 2003

I'm sorry about Sam. My allergies are really bothering me right now (but

Drew seems to be handling things ok. go figure! LOL)

YEAH on the pregnancy test. It made me laugh when you said how high your

#'s were. I had a blood test to confirm pregnancy with Mattie since I had a

negative urine test with Drew. The lab tech came out and said WOW you are

really pregnant (is there a sort of pregnant?) He hadn't seen numbers that

high before. I can't remember what they were but I have done some reading

and I think I was pregnant with twins with Mattie and lost one baby early

on. That's ok though :-) If we would have had twins we wouldn't have had

anymore children and we wouldn't have an :-)

----- Original Message -----

Well things are going well for us.

I'm really getting a good look at what Sam's sesonal allergies are

probably going to mean for us. He has started coughing again and I

think it asthma stuff kicking in b/c of allergies. We went to

visit my Granparents house for the long weekend (6hrs away) and were

only able to stay for 24hrs! They had neighbors that were cutting

hay and grasses and it was really causing Sam major problems. I

didn't even think to take the neubulizer since he hasn't needed it

lately. So I wasn't willing to take the risk of ending up in the

hospital will breathing problems. So we cut our trip very short!

Back home he started clearing up almost the instant we walked in the

house. So now I at least have a clue what this will be like.

We will go over to MIL's tonight for a BBQ. It should be fun and I

don't have to cook!

News on me- I can't remember last time I posted so some of this might

be a repeat. I went in on Thurs. for a blood test to see if I was

pregnant or not (which I knew I was, but they needed numbers). So

the beta results came back and I am pregnant. I asked about the

leves and they want wanted me above 50 and I was 226! So I went in

Sat. morning and did another test and they wanted that 226 to be up

about 70% (so almost 400) and I was 874! I'm pretty sure it is

twins, but we won't know forsure until the 5th or 6th when we get the

first ultrasound! I'm feeling good- but tired!

Trish

May 26, 2003