My Folder

Hi Jan,

Wow.....now there is some wonderful news that I can celebrate today...I love to hear of lowered pressures!

i am glad Joshiah is doing well and doing good with oral meds...yeah!

Wow....again...I didn't know that you have been a real live nurse practitioner for a whole year! That must be a pretty cool job. I think it is great that you work with a great md...the np i went too didn't have an md to look too and ended up with all types of problems treating me with my allergies and such. it made it hard for them....bad for me...and hard feelings all around.

keep us informed as you get closer to the surgery...and how things are going.

love, celeste

An old man was sitting on a bench in the mall when a young man with
spiked hair sat down beside him. The boy's hair was yellow and green and
orange and purple. He had black makeup around his eyes.
The old man couldn't keep from staring at the youngster.
The boy said, "What's the matter, old man, haven't you ever done
anything wild in your life?"
The old man answered, "Well yes, actually, I have. I once got drunk and
had sex with a parrot. I was just wondering if you were my son."

Hi Nicole
Don´t be worried everybody I think (at least me) has
experieced some sort of panic in initial testing
process, I did it in the first three weeks after the
suspection of my PH alone, I feel I canot share with
anybody this and I was hard, but any way you can not
loose the faith, the faith in yourself, in your life
and in God (if you belive in Him)
There are so many things that can give you an asthma
attack, the dust, the flowers, the protein in cat´s
hair, the changes of weather some sort of food very
processed dye in red, black (like coke) or yellow
(like cheetos) so many things, but the idea is not
isolete from the rest of the world, you with a little
of time you can find out what of that different
things will cause an asthma attack.
If I´m not wrong you are 30, I´m 33 so we have similar
ages, for the things you write I can see you are
anxious to me read some books help me in the process,
but any way, It doesn´t matter what do you read, never
give up the medical treatment, all the things help
the treatment. I read some books of Loise HAy, and
that for me was useful.
I send you a hug and my prayers.
Ernesto

FREE YORKSHIRE TERRIER.
8 YEARS OLD. HATEFUL LITTLE DOG.
FREE PUPPIES:
1/2 COCKER SPANIEL
1/2 SNEAKY NEIGHBOR'S DOG
FREE PUPPIES...PART GERMAN SHEPHERD, PART STUPID DOG.
GERMAN SHEPHERD, 85 LBS.
NEUTERED. SPEAKS GERMAN. FREE.
FOUND: DIRTY WHITE DOG.
LOOKS LIKE A RAT...
BEEN OUT A WHILE...
BETTER BE REWARD.
1 MAN, 7 WOMAN HOT TUB -- $850/OFFER
AMANA WASHER - $100
OWNED BY CLEAN BACHELOR WHO SELDOM WASHED.
SNOW BLOWER FOR SALE --
ONLY USED ON SNOWY DAYS.
TICKLE ME ELMO, STILL IN BOX, COMES WITH ITS OWN 1988 MUSTANG, 5L, AUTO,
EXCELLENT CONDITION - $6800
COWS, CALVES NEVER BRED...
ALSO 1 GAY BULL FOR SALE.
83 TOYOTA HUNCHBACK - $200
FULL SIZED MATTRESS.
20 YEAR WARRANTY LIKE NEW. SLIGHT URINE SMELL.
FREE, 1 CAN OF PORK & BEANS WITH PURCHASE OF 3 BR, 2 BATH HOME.
FOR SALE: LEE MAJORS (6 MILLION DOLLAR MAN) - $50
NORDICK TRACK - $300
HARDLY USED, CALL CHUBBY
BILL'S SEPTIC CLEANING
"WE HAUL AMERICAN MADE PRODUCTS"
SHAKESPEARE'S PIZZA - FREE CHOPSTICKS
HUMMELS - LARGEST SELECTION EVER "IF IT'S IN STOCK, WE HAVE IT!"
GET A LITTLE JOHN:
THE TRAVELING URINAL HOLDS 2 1/2 BOTTLES OF BEER.
GEORGIA PEACHES, CALIFORNIA GROWN - 89 CENTS LB.
NICE PARACHUTE: NEVER OPENED, USED ONCE, SLIGHTLY STAINED.
AMERICAN FLAG, 60 STARS - POLE INCLUDED - $100
JOINING NUDIST COLONY!
MUST SELL WASHER AND DRYER - $300
ALZHEIMER'S CENTER PREPARES FOR "AN AFFAIR TO REMEMBER."
FOR SALE BY OWNER -
COMPLETE SET OF ENCYCLOPEDIA BRITANNICA. 45 VOLUMES, EXCELLENT
CONDITION. $1,000 OR BEST OFFER. NO LONGER NEEDED. GOT MARRIED LAST
WEEKEND. WIFE KNOWS EVERYTHING.

I can never understand to weight chart they put out. Some of them are so
ridiulous and make people feel like they are so overweight no wonder why
we have so many people with weight problems. Either it invloves excessive
over eating to bulemia and anorexia there are so many reason for why
people have weight problems and a goodd amount are do to genetic, social
surroundings and many other factors. How do they even come up with these
charts? Every person on this planet is very unique so how can you make up
charts that are so very narrow minded to tell you how much you show
weigh. There are alot of factor that go into how much you weigh. There
are many different style the way the body is proportioned. Even the
small, medium, and large frame doesn't go far enough to tell how much of
a variance what a person's ideal weight show be and I think it go so far
as being person specific. There are so many factors and the charts they
come out with just confuse people even more. Saying a person giving their
specs that a certain number should be their ideal weight how do these
people who make these charts up know they are right. Anytime I look at
them the weight figures they have come up with are so ludicrious since it
suggests even alot of our top atheletes are overweight. I don't even look
at these chart anymore. A person can figure out what the ideal weight for
what their body should be and when they attain it they will know it. It
would be much helpful if they came out with more informative ways as how
to figure what whould be the ideal weight for your type of body. Maybe if
they put their heads they can come up with a formula that will make more
sense and come up with more realistic weight figures. I am a large frame
male as you would call it. so I would be able to weight at leat 30 to 50
pounds over a person who have a slim structure and I would not be
overweight because a person like me has more area to distribute the
weight. Maybe if the people in the scientific world finally sat down for
us and took some time to finally figure out the true weight chart with
all the variables put in then I would seriously give these weight charts
any merit until then. I will go by my own judgement. A person came look
at themselves and tell that they are overweight but some that doesn't
make it wrong it depends on the person on how they except the weight they
are at.
Rob
'Sognman' Liptak

Hi Veronica,
Darrell took diamox and had some of the usual side-effects ...he has also
taken sulfa and not had reaction.
((HUGS))
Lynn
(The Texan)

Nicole,
I know that the waiting is difficult. Some of us have known for years something was wrong but always got misdiagnosed and we are still here. I think that for all of us our anxiety goes in cycles especially when we are facing the unknown and more medical tests and procedures. That's where this group really helps out.
Your doctor probably just wanted to try one more med before putting you through all the tests and stuff. If he thought that you were in any imminent danger he would have done the tests and not tried another drug.
Please keep me posted and I will keep you in my prayers. Deborah

Pam, I am so glad to hear that progress is being made toward transplant. My prayers are with all of you.

Blessed be,

JanW

Jan Windz
jwindz@...
Why Wait? Move to EarthLink.

God ,
I wish I had done that! Would have been so wonderful to pass on!. Had my
first great-grand daughter this year and would have loved to have things to
pass on. Life is so very short!
Robbin

Hi All,

Celeste- Thanks for asking about Josiah. He had his full cardiopulmonary work up, including heart cath last week. I am thrilled to announce that his numbers were better than at his last heart cath two years ago. At that time his pressures were in the 80s and his CI was 8. Now his pressures are in the high 60s and his CI is 6! Thank you Lord (with the help of Tracleer and Revatio).

Pam, I was thinking about you and Becky also. How are things going? I hate to ask, with all that you are going through, but, if you have time could you email me privately with any tips of things that you wish you had known before surgery that you know now. Much thanks.

Jennifer- How is school going? Are you done now? It is hard to believe that I've been a real live nurse practitioner for a year now. It still scares me to death that people put their lives in my hands. Thankfully I work with a great MD, who never minds coming to my rescue.

Blessings to all,

JanW

Jan Windz
jwindz@...
Why Wait? Move to EarthLink.

KFC has been a part of our American traditions for many years. Many
people, day in and day out, eat at KFC religiously. Do they really know
what they are eating?
During a recent study of KFC done at the University of New Hampshire, they
found some very upsetting facts.
First of all, has anybody noticed that just recently, the company has
changed their name?
Kentucky Fried Chicken has become KFC. Does anybody know why?
We thought the real reason was because of the "FRIED" food issue. It's not.
The reason why they call it KFC is because they can not use the word chicken
anymore. Why? KFC does not use real chickens. They actually use genetically
manipulated
organisms. These so called "chickens" are kept alive by tubes inserted into
their bodies to pump blood and nutrients throughout their structure. They
have no beaks, no feathers, and no feet. Their bone structure is dramatically
shrunk to get more
meat out of them.
This is great for KFC because they do not have to pay so much for their
production costs. There is no more plucking of the feathers or the removal of
the beaks and feet.
The government has told them to change all of their menus so they do not say
chicken anywhere. If you look closely you will notice this.
Listen to their commercials, I guarantee you will not see or hear the word
chicken.
I find this matter to be very disturbing. I hope people will start to
realize this and let other people know.
Please forward this message to as many people as you can. Together we make
KFC start using real chicken again.

Hi Jean
I hope not being late.
Pulmonay Hypertension is due to many things, the mine
is primary, that means that nobody kows (yet) what es
the cause of it.
But in the study after an echo, some cardiologist make
an transesophagal echo, to make sure some messures
of pressures, but if you have an evident heart
disease the next step is an artetiography, you dont
have to worried is safe, is done with an small
catheter, I´m not so sure if you are a man or a woman,
but if you are a man a best advice for the proccedure
is shave yourself the your groin and muscle, is very
annoying that process.
I think in the arteriography they are going to look
the messure in pulmonary arthery and find out if there
are a response to NO and fit a tratment after that.
Good lock God Bless you
Ernesto

Dear Patrice,

How wonderful that you are going to be going to your husbands grandparents 60th anniversary this weekend. wow....60 years....I don't think any of my relatives ever made it that long....... NY is beautiful this time of year although I haven't seen much of the south.

Are the children going to get to go too? Be careful and make sure you don't get overtired or anything please...and make sure you drink enough on the trip....don't you love it when i try to mother...I know my kids get peeved too so i have learned to only say the necessary....and by saying this i hope you know how much i care about you and your family.

I hope you have a wonderful time.....please write and tell us how long it took to drive up here. I would find that interesting.....because I always want to go somewhere on a trip .

I am not sure where the Camburg area is...we are closer to lake placid...you have probably heard of that because it is an olympic village. have a great time...and enjoy....much love, celeste

Lynn,
Funny (tragic) story!
This sounds like a great idea. Perhaps I should do that too. Practically
speaking,
though, in the world of busy schedules, and Mangled Care demands, I suspect that
most will not do this. Too many demands on our time. Next time, before
scheduling
yourself, you might consider asking the scheduler when you call the next office,
whether or not his or her doctor treats patients with PTC, and if so,
approximately
how many. Just don't think it realistic to expect front office staff in an
office
with possibly high turnover to know whether a relatively rare condition like PTC
would be something that their doctor dealt with.
The above experience would not be surprising if she were a primary care
physician.
It would be inexcusable, however, if your hoped-for doctor was a neurologist,
neuro-ophthalmologist, or ophthalmologist. You should expect the latter three
specialties to know what PTC is. Some, obviously as noted on this list, do a
much
better job of it than others, I'm sorry to say. Ophthalmologists usually help
in
diagnosis (identify papilledema in a person complaining of headache) and direct
them
to a neurologist for a neurological exam, possibly CAT scan and/or MRI, and LP
to
confirm increased intracranial pressure, since PTC is a diagnosis is exclusion.
If
you experienced lack of knowledge of what the disease was from any of these
specialists, run, don't walk from that office.
Just as I don't expect primary care physicians (PCP's) to know much about the
eye
(sadly,) since they have very little exposure to ophthalmology in med school (an
orphan *specialty* just as PTC is an orphan disease,) so too, I wouldn't expect
PCP's to know about the existence of PTC!
Roger D. Nunn, MD
Ophthalmologist

A crusty old man walks into a bank and says to the teller at the window,
"I

Hello everyone,

Well, a number of things have happened about Becky in the last two days. Becky has been a lot worse the last couple of weeks. This week seems to be the worst so far. She is having to spend a lot of her time either resting in bed with oxygen or sitting around with oxygen on. It is pretty scary for her and for us.

Yesterday I had written a letter to Blue Cross trying to tell them why they should let us have the transplant at Tx. Childrens, and faxed it to Julie Pickman at Blue Cross that the insurance lady at TCH had been dealing with. In about two hours I got a call from Ms. Pickman stating that she didn't think that TCH had been telling me everything that was going on. She said that she had told TCH that Blue Cross was willing to let us do the transplant at TCH on an in-network basis, but that in order to do that they just needed documentation from TCH to show that the transplant was medically necessary. She also said she had told them at the beginning of this process that they could go ahead and do the transplant evaluation and they would pay for that since TCH was a PPO hospital on my policy. The insurance lady at TCH never told me any of them - she just told me that Blue Cross wanted more medical information on Becky. I was angry at TCH. Then Ms. Pickman told me that the
information they needed could only be gotten from doing a transplant evaluation anyway.

So I e-mailed the TCH lady, told her about my conversations with Ms. Pickman, and said o.k., when are we going to do the transplant evaluation? She said she didn't know yet - that she was waiting on Dr. Mallory. I was really perturbed then, and e-mailed Dr. Mallory, described what had happened with the insurance company, that I wanted a transplant evaluation as soon as possible, and described how much worse Becky was. I got an e-mail back from him today saying that even though the heart transplant was a problem, that he believed that doing a lung transplant was probably possible. As it happened (fortunately) we already have an appointment with Dr. Mallory for tomorrow and while we are there we are supposed to meet with the surgical director of their program to discuss whether the lung transplant is possible.

So I am hoping and praying that the surgical director will agree it is possible, and they will proceed quickly to do the transplant evaluation, which is a series of tests. One of the good things about their program is that they have a shorter waiting list than most people - less than 6 months rather than years. The one in Cleveland has a 2 year waiting list!

I am having trouble with my stomach now - diarrhea and feeling all the time like there are butterflies in it. Guess it's my reaction to all this stress.

Anyway, I'd appreciate your prayers, good thoughts, etc. as I really want to hear in the end that TCH will agree to do Becky's lung transplant. She'll still have a heart with problems, but at least hopefully she's have a chance at life.

Pam (mom to Becky - 18 - severe PH, congenital heart defects, scoliosis, multiple spleens; Johnny -15; and Laura - 12)

Hey! If you are allergic to it, don't take it. That is ridiculous. You could
take Lasix. I take that, too. It is just a regular diuretic and it has worked
well for me. I did take Diamox at first but had a bad reaction to it, so we
switched. I can't believe your Dr. hasn't offered any other choices! What is
wrong with these people?
Freedom

Sorry if this is a repeat, but I thought it was cute :-)
THE LOVER

Hello,

I haven't seen any posts from ph parents.

I have been wondering how everyone is doing? I have been wondering how Pam made out with the insurance and docs regarding becs transplant......I have been wondering about all the children and moms .....If Josiah (spelling)'s surg. is still on for 8-27......if anyone has been able to swim this summer.

if someone has time....and you know anything that i don't...please send me an update....Hey, Jenn.....are you through school ....

i hope everyone is enjoying summer. I don't enjoy anything too much yet. not doing anything...still trying to rescue the poodles...feeling quite sad as we are going into the sh-thole time when Noel woke up that morning and things were never the same again. I hate this life without Noel and I thank God...and I know Noel had something to do with it.....everyday for bliss.....love you guys and hope all is well.....much love, celeste

Deborah
Thanks for your message, I hope so also this will
help. the last 3 weeks a was working, because I need
free time for the recovery so I needed to arraged some
shifts
A hug
Ernesto
PD.. Virginia, I´m wondering are you a nurse?

2000 Yr Old Miracle Diet surprising lose weight
http://gnu.vu/?C6J7Uzqa

Hi Veronica. I too have the same reaction to sulfur. I don't take Diamox
tho. I take Prednisone and Lasix. I always wondered why my dr didn't give
me Diamox ,since it seems to be the Drug of choice here. I guess thats why.
Welcome to the group. I'm sure you'll find it as helpful and fun as the
rest of us.
Laurie K.

*Miracle Diet Secret*^^ wow watch weight
http://gnu.vu/?1XjX24iT right click at web site and 'save as' to your desktop

[INLINE]

Hi all,
I just got home from playing tour guide around Santa Fe (my home) to one of our listserve members---Kathleen. She is a young mother of 3 young boys. Unfortunately I only met two of the boys because one was sick this morning and her husband stayed with him while Kathleen, Matthew, Ben and I did the NM Children's Museum, had lunch and a quick drive around the town to see our historic plaza. It was good for both of us to talk about how we were diagnosed, etc., She told me that I was the first person from our listserve that she has met. I am also the first person with PH that she has met. (I should have been at my best behavior.) Now both of us can put a face to the name on the computer screen.....

I hope you all could pull up the research I just put out from Medscape about the inhaled NO. Very interesting.
Diana

Hi,
I,too, am allergic to sulphur drugs. It wasn't until a few weeks ago that I
found out that it was a sulphur drug. I am still having problems with the fact
that my dr. and pharmacist prescribed something that they knew I was allergic
to. I was on diamox for about a year with the maximum dosage being 1500 a
day. I don't recall having any adverse reactions;however, now I wonder if I
had some problems that I thought were caused by something else.
Welcome to the group. I always hope that anyone that joins will not need us
long. I hope that we will just get to be life long chatters instead of ptc
people.
Take care and God bless,
Sheila

this is amazing http://www.auhua.net/dmlu

Hi,
My name is Veronica, and I am a 32-year PTC sufferer. While I have been
recently diagnosed, my identical twin sister was diagnosed with PTC 3 or 4
years ago. Luckily I have had her to talk to. But there is one problem
she and I don't share, and that is that I am alergic to sulfur. I am told
Diamox is of the sulfur family. Unfortunately, my doctor wants me try it
anyway. So I am taking benedryl in preparation for the diamox, and will
probably have to take both simultaneously. (A sulfur medication gave me
hives a few years ago.)
Anyone else have this problem with sulfur or diamox?
V.

People judge your dick size by your shoes size.
With xtrasize+ you dont have to wear
bigger shoes to make women think you have a huge dick.
You can actually have it.
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***It takes no more time to see the good side of life than it takes to see
the
bad.****
-

renee,
I took lupron for a similar procedure about a year before I was dignosed. It
may increase headaches. the Lupron throws the body into an immediate state of
chemical menopause. You may incur the symptoms of menopause; hot
flashes(surges), mood swings, memory changes etc. The symptoms faded about
three months after the end of therapr-surgery. goodluck Donna in Maine

Medscape [LINK]

BROWSE [Focus On............]
SEARCH

Jaince
hope the reformatting of your computer harddrive went well. Do you think they
can reformat my harddrive when I have my Lp shunt put in. I want the format
without PTC LOL. Donna in Maine

Attn:Tech support
Last year I upgraded from Girlfriend 7.0 to Wife 1.0
and noticed that the new program began unexpected
child processing that took up a lot of space and
valuable resources. No mention of this phenomenon was
included in the product brochure. In addition, Wife
1.0 installs itself into all other programs and
launches during system initialization, where it
monitors all other system activity. Applications
such as Pokernight 10.3, Boys Night Out 2.5 and
Saturday Football 5.0 no longer run, even crashing
the system whenever selected. I cannot seem to keep
Wife 1.0 in the background while attempting to run
some of my other favorite applications.
I am thinking about going back to Girlfriend 7.0,
but the uninstall does not work on this program.
Can you help me, please!!!
Thanks,
Joe
Dear Joe:
This is a very common problem men complain about but
is mostly due to a primary misconception. Many people
upgrade from Girlfriend 7.0 to Wife 1.0 with the idea
that Wife 1.0 is merely a UTILITIES & ENTERTAINMENT
program. Wife 1.0 is an OPERATING SYSTEM and designed
by its creator to run everything. It is unlikely you
would be able to purge Wife 1.0 and still convert back
to Girlfriend 7.0. Hidden operating files within your
system would cause Girlfriend 7.0 to emulate Wife 1.0
so nothing is gained.
It is impossible to uninstall, delete, or purge the
program files from the system once installed. You
cannot go back to Girlfriend 7.0 because Wife 1.0
is not designed to do this. Some have tried to
install Girlfriend 8.0 or Wife 2.0 but end up with
more problems than the original system. Look in your
manual under Warnings-Alimony/Child Support". I
recommend you keep Wife 1.0 and just deal with the
situation.
Having Wife 1.0 installed myself, I might also
suggest you read the entire section regarding GPFs
(General Partnership Faults). You must assume all
responsibility for faults and problems that might
occur, regardless of their cause. The best course
of action will be to enter the command C:\APOLOGIZE.
In any case avoid excessive use of the Esc key because
ultimately you will have to give the APOLOGIZE command
before the operating system will return to normal. The
system will run smoothly as long as you take the blame
for all the GPFs. Wife 1.0 is a great program, but
VERY high maintenance. Consider buying additional
software to improve the performance of
I recommend Flowers 2.1 and Chocolates 4.0. Do not,
under any circumstances, install Secretary With Short
Skirt 3.3. This is not a supported application for Wife
1.0 and is likely to cause irreversible damage to the
operating system.
Best of luck,
Tech Support

Wow,

Of course that was a message from Noel.

Blessed be,

Jan W

Jan Windz
jwindz@...
Why Wait? Move to EarthLink.

Hi Mary,

I'm in the Grande Prairie area which is approx. 7 hours north of Calgary. Calgary is a beautiful city although we don't get there often. My specialist is in Edmonton which is where the Transplant Clinic is but I'm not on the list yet. I don't think that you would like the weather that has plagued Alberta this spring. Calgary was hit pretty hard with snow but we still can't see our yards for the snow.

Take care,

{{{hugs}}}

Karen

Karen - Where in Alberta are you? My brother lives in Calgary

Hi Celeste

I believe that Noel sent you that particular fortune cookie. I'm glad it brightened your day. I love to hear stories like that.

best wishes

chris

mum to tara

sarah,
glad to hear that you are home after your surgery. Take it easy and hope it
works!
Donna in Maine

I'm a psychic amnesiac. I know in advance what I'll forget."
-- Michael McShane
***It takes no more time to see the good side of life than it takes to see the
bad.****

I would say that is a direct message from Noel! That is a wonderful story.

Mitzi
poofect <poofect@...

Hi all,
Hope everyone is hanging in and doing okay. I know this ride can be a bit of a bitch!
anyway......i wanted to tell this...last night ron and i went out to eat at a chinese restaurant for his birthday. when we were coming out i opened my fortune cookie and out pops this message...straight up...saying....Miss You..yes,, it was a tear fest for me to say the least.
It makes me wonder if Noel could have somehow helped me get that one. anyway as usual I am missing her terribly and that one little message...how it got there I don't know...but it made me feel a little better to know that she did miss me as much as i miss her. weird....weird how something like that was probably just some kind of co.in...key..dink....but I felt as if It was a message straight from Noel meant just for me....and her dad.
I hate this.....much love, celeste

----Subject: Fwd: FW: Food for Thought

It's been awhile, since I left a message. I went back to that
allergist and he said I had to try singulair to make sure it didnt
help for two weeks and then i think he's going to refer me. I asked him if
other problems can cause asthmatic symptoms and he said unfortunately yes-
so i guess we were on the same page after all, I was scared but i took the
singulair, i dont really see any difference- he made it clear we had to do
something about my lungs, ive been back 5 times-
now i am so worried- the tests on the pulminary board look so frightening. have
you all experienced them? it seems i can breath, but i cant breath out very
long, i think this is why i am tired all the time, how do you know when it's too
late to help your lungs
well e-mail me at wolp506@... and tell me what you think, only 1 week and
1/2 to go till the referral
nicole

Hi....She is doing better....check out her carepage

www.carepages.com

her page is under: avaann (one word)
poofect <poofect@...

Hi Mitzi,
I just saw that Ava is still shacked up at Boston Childrens....how is she doing?
Thank you for the update...Celeste

Why is someone who has barely made it said to have done so "in
the nick of time?"
In Medieval times, sticks were used as counters, a sort of
primitive version of the beads on an abacus. Schools adapted
this crude tool for taking attendance. As long as you made it
by the time the person taking attendance reached your name,
you received a notch on the stick used to record your
presence. That was the nick of time.

Note: In case you were not able to receive the graphic with the
previous message, it is a picture of a young girl in a swimming pool,
smiling underwater. The text reads:
CASTING CALL
Do you want to share your story?
Periwinkle Films is casting for the documentary feature "I Used to Swim
Alot"
Also, the email address (which reads periwinkle@...) is @gmail.com
If you have any trouble getting this information, please contact Dayle
at the PHA office.
Thank you!
Dayle Kern
Advocacy and Awareness Associate
Pulmonary Hypertension Association

Nicole Bouchard wrote:
Can you imagine working at the following Company?
It has a little over 500 employees with the following statistics:
*29 have been accused of spousal abuse
*7 have been arrested for fraud
*19 have been accused of writing bad checks
*117 have bankrupted at least two businesses
*3 have been arrested for assault
*71 cannot get a credit card due to bad credit
*14 have been arrested on drug-related charges
*8 have been arrested for shoplifting
*21 are current defendants in lawsuits
*In 1998 alone, 84 were stopped for drunk driving
Can you guess which organization this is? Give up?
It's the 535 members of the United States Congress. The same group that
perpetually cranks out hundreds upon hundreds of new laws designed to keep
the rest of us in line.

Okay - I'm at a loss. Who is this photo of???
Deb

Dear Friends,

Long-time PH patient and filmmaker, Kirsten Larson, is organizing a documentary about growing up with PH. The following information is from a flier Ms. Larson is using for the casting call. If you and your families are interested in participating, please use the contact information below. (Note - this is not a PHA initiative, PHA has merely agreed to post this information to the PH community).

[INLINE]

The film will focus on the lives of seven young PULMONARY HYPERTENSION patients as they attempt to blend in with their peers even though they are truly one in a million. Currently searching for children and families from all walks of life plagued with Pulmonary Hypertension to participate in the project. We would need to document approximately two weeks of your home life, following your child during a pinnacle point in their life, i.e. Birthday/Pool parties, Sweet 16, Medical Transitions, Prom/dating, etc.

Generally we are looking for children and young adults ranging from ages 2 to 26 but we are open and willing to accept applications of all ages.

HOW TO APPLY:

If you think you fit the criteria and are interested in being involved in the process of spreading awareness of Pulmonary Hypertension we are currently accepting application videos.

1. Videos must be under five minutes explaining what you want to share about how PH affects your every day life. Please remember to list any upcoming events that may play an important role in your life as a PH patient.

2. Audition tapes must be in English.

3. Video format must be in VHS, DVD, miniDVD or miniDV. (Other formats may not be accepted)

4. Please label clearly with your name, age, phone number and address.

Application packages must be sent no later than September 30, 2007 to:

Kirsten Larson

95a McDivitt Avenue

Staten Island, New York 10314

Periwinklefilms@...

(347)581-0080

I JUST SPOKE WITH SOMEONE AT THE GYM AND SHE SAYS THAT SHE HAS HEARD
WHEN YOU GET BAD HA'S DRINK LOTS AND LOTS OF WATER!!!
HAS ANYONE HEARD THIS, TRIED THIS??????
IT CERTAINLY WOULSD NOT BE HARMFUL TO TRY. LET ME KNOW IF ANYONE DOES
MARY D. IN SO CAL

Im sure drinkin lots of water cant hurt.. water cleans the body of all
the toxic stuff .. washes it out of the system ... heres an article I
came across on the web..
"HOW 8 GLASSES A DAY KEEP FAT AWAY"
By Donald S. Robertson, M.D.
Water suppresses the appetite naturally and helps the body metabolize
stored
fat. Studies have shown that a decrease in water intake will cause fat
deposits to increase, while an increase in water intake can actually
reduce
fat deposits. Here's why:
The kidneys can't function properly without enough water. When they
don't
work to capacity, some of their load is dumped onto the liver. One of
the
liver's primary functions is to metabolize stored fat into usable energy
for
the body. But, if the liver has to do some of the kidney's work, it
can't
operate at full throttle. As a result, it metabolizes less fat; more fat
remains stored in the body and weight loss stops.
Drinking enough water is the best treatment for fluid retention. When
the
body gets less water, it perceives this as a threat to survival and
begins
to hold onto every drop. Water is stored in extra-cellular spaces
outside
the cells. This shows up as swollen feet, legs and hands.
The best way to overcome the problem of water retention is to give the
body
what it needs: plenty of water. Only then will stored water be released.
The overweight person needs more water than the thin one. Larger people
have
larger metabolic loads. Since we know that water is the key to fat
metabolism, it follows that the overweight person needs more water.
Water helps to maintain proper muscle tone by giving muscles their
natural
ability to contract and by preventing dehydration. It also helps to
prevent
the sagging skin that usually follows weight loss. Shrinking cells are
buoyed by water, which plumps the skin and leaves it clear, healthy and
resilient.
Water helps rid the body of waste. During weight loss, the body has a
lot
more waste to get rid of. All that metabolized fat must be shed. Again,
adequate water helps flush out waste.
Water can relieve constipation. When the body gets too little water, it
siphons what it needs from internal forces. The colon is one primary
source.
Result? Constipation. But when a person drinks enough water, normal
bowel
function usually returns.
So how much water is enough? On the average, a person should drink eight
8-ounce glasses every day. That's about 2 quarts. However, the
overweight
person needs one additional glass for every 25 pounds of excess weight.
The
amount you drink also should be increased if you exercise or if the
weather
is hot and dry.
Water should preferably be cold. It is absorbed into the system more
quickly
than warm water. And some evidence suggests that drinking cold water can
actually help burn calories.
To utilize water most efficiently during weight loss, try to follow this
schedule:
MORNING: 1 quart consumed over a 30 minute period.
NOON: 1 quart consumed over a 30-minute period.
EVENING: 1 quart consumed between 5 and 6 P.M.
When the body gets the water it needs to function optimally, its fluids
are
in perfect balance. When this happens, you have reached the
"breakthrough
point." This is when endocrine gland function improves:
(1) Fluid retention is alleviated as stored water is lost.
(2) More fat is used as fuel because the liver is free to metabolize
stored
fat.
(3) Natural thirst is returned.
(4) There is a loss of hunger almost overnight.
If you stop drinking enough water, your body fluids will be thrown out
of
balance again, and you may experience fluid retention, unexplained
weight
gain, and loss of thirst. To remedy the situation, you have to go back
and
force another "breakthrough."

Hi all,

Hope everyone is hanging in and doing okay. I know this ride can be a bit of a bitch!

anyway......i wanted to tell this...last night ron and i went out to eat at a chinese restaurant for his birthday. when we were coming out i opened my fortune cookie and out pops this message...straight up...saying....Miss You..yes,, it was a tear fest for me to say the least.

It makes me wonder if Noel could have somehow helped me get that one. anyway as usual I am missing her terribly and that one little message...how it got there I don't know...but it made me feel a little better to know that she did miss me as much as i miss her. weird....weird how something like that was probably just some kind of co.in...key..dink....but I felt as if It was a message straight from Noel meant just for me....and her dad.

I hate this.....much love, celeste

A man decided it was time to shed some excess pounds. He
took his new diet seriously, even changing his driving route
to avoid his favorite bakery.
One morning, however, he arrived at work carrying a gigantic
coffeecake. Everyone scolded him, but his smile remained
cherubic.
"This is a very special coffeecake," he explained. "I
accidentally drove by the bakery this morning and there in
the window were a host of goodies. I felt this was no
accident, so I prayed, 'Lord, if you want me to have one of
those delicious coffeecakes, let me have a parking place
directly in front of the bakery.'
"And sure enough," he continued, "the eighth time around the
block, there it was!"

OMG, that was the best joke I've heard yet, Deb. ROFLMAO.
Bettianne

I take ccbs, coumadin and prilosec too! I do not have symptoms similar to
yours, so maybe it is reflux. However, my heart has always felt as it is
skipping a beat since my diagnosis. It is particularly noticable when I
exert myself in any minor way. And it is pretty bad if my bp is up. Work
hard at being calm and moving through life gently. How is your bp? I wore
the 24-hour halter to monitor my heart and pushed the button each time I
felt something different (that skipped beat) but nothing significant came
back from the test. And all of this was done before I was diagnosed 11 years
ago. I don't want to say "you'll get used to it", but if everything else is
okay, be thankful that you can feel your heart beat (or miss a beat). Do you
see a PH specialist? If not, find one soon. Some people need to travel a
long ways to see one, others can find one in their city, especially if they
live near a university with a teaching hospital. Good luck and let us know
how things turn out.
Carla
Ohio

Hi Tracy!
I go back on December 11 to Johns Hopkins... if you are there we could
meet. Didn't we miss by one day last time?
:-)
If that doesn't work we can connect somehow!
:-)
Dawn
Message: 10
Date: Fri, 4 Dec 1998 12:12:41 EST
From: Jessena@...
Subject: Hi Dawn.
Hello Dawn,
How are you doing? How are your doctors at Hopkins trying you? I would
love to
talk with you some more? Give me a call or email me so we can set up a
time to
talk. PLEASE? Thank you.
Your friend,
Tracy D. in PA

THE SMARTER SEX
A woman and a man are involved in a car accident; it's a bad one. Both of
their cars are totally demolished but amazingly neither of them are hurt.
After they crawl out of their cars, the woman says, "So you're a man, that's
interesting. I'm a woman. Wow, just look at our cars! There's nothing left,
but fortunately we are not hurt. This must be a sign from God that we should
meet and
be friends and live together in peace for the rest of our days.
The man replied, "I agree with you completely.
"This must be a sign from God!" The woman continued, "Look at this, here's
another miracle. My car is completely demolished but this bottle of wine
didn't break.
Surely God wants us to drink this wine and celebrate our good fortune." Then
she hands the bottle to the man.
The man nods his head in agreement, opens it and drinks half the bottle and
then hands it back to the woman. The woman takes the bottle, immediately puts
the cap back on, and hands it back to the man.
The man asks, "Aren't you having any?"
The woman replies, "No. I think I'll just wait for the police..."

Greta,
Glad it got a laugh, sorry for the headache.
Hugs, Bettianne

Bettianne!!!!
I want you to know that you about killed me with that drink list! I
had a co-worker over here reading it with me and I laughed so hard I almost
barfed at my desk!! Now my head hurts.
Grateful for the laugh,
Greta in id

Hi Mitzi,

I just saw that Ava is still shacked up at Boston Childrens....how is she doing?

Thank you for the update...Celeste

Hello
Your have made a typo in the domain name you were sending
an e-mail to.
Please correct your mistake and try again.
BTW You can find hidden internet treasure at
http://typos.powerclick.com
Sincerely,
Powerclick.com
This is not spam since you originally sent us an email.
So as a favor take a look at our current hidden treasure.

FOR THOSE THAT HAVE MISSED THE DRINK RECIPES...
Absolute Zero............Absolut vodka over frozen nitrogen
Alexander the Grrreat....Gin, creme de cacao, and sweet cream over corn
flakes
American in Paris........Kentucky bourbon and champagne
Black Sabbath............Kahlua and Mogen David wine
Blind Faith..............Wood alcohol and sacramental wine
Blood Clot...............Vodka, tomato juice, and Jell-O
Bloody Awful.............Vodka and ketchup
Blue Moon................Corn whiskey and Aqua Velva
Coleman Cooler...........White wine, soda, fried chicken crumbs, sand
Fuzzy Naval Base.........Peach schnapps, orange juice, and ammonia
George Bush..............George Dickel bourbon and Busch beer
Gorbachev................Vodka with a splash of port wine
Honeydew the Dishes......Midori and Dawn
Marie Antoinette.........Bourbon, cake mix, and flat beer
Martinizer...............Gin, vermouth, and carbon tetrachloride
Mary Poppins.............Vodka, tomato juice, and a spoonful of sugar
Mexican Hairless.........Tequila and Minoxidil
Oil of Ole...............Mazola and Sangria
Peter, Paul, and Mary....Potassium nitrate, Paul Masson wine, and tomato
juice
Phillips' Screwdriver....Vodka, orange juice, and milk of magnesia
Port in a Storm..........Red wine and rainwater
Quack Doctor.............Cold duck and Dr. Pepper
A Rum with a View........Bacardi and Visine
Rum-Pole of the Bailey...Bacardi rum, Popov vodka, and Bailey's Irish
Cream
Sake-to-me...............Rice wine, punch, and nitrous oxide
Scotch Tapeworm..........Dewar's and Mescal
Shipwreck................Cutty Sark on the rocks
Short Wave...............Ripple in a shot glass, ginger, syrup, and
pomegranate
Sinead O'Connor..........Irish whiskey and Nair
Skid Roe.................Muscatel and caviar
Sour Kraut...............Schnapps and lemon juice
Sundae Driver............Vodka, orange juice, and ice cream
Tequila Mockingbird......Jose Cuervo and birdseed

HELLO I JUST RECENLY JOINED ALSO!!MY NAME IS MARTHA I HAVE PPH I
JUST FOUND OUT IN JAN. I'M ON FLOLAN RATE OF 66 (1 RED CAP)!! GLAD TO
HEAR FROM YOU!! TELL US ABOUT YOURSELF WHEN YOU WANT TO!! WE ALL LIKE
TO KNOW A LITTLE ABOUT EACH OTHER TO COMPARE NOTES!!! I'M FROM S.W.
OHIO!! SMALL TOWN, BLINK & YOUR THRU IT !!! IT'S A 1 LIGHT TOWN !!! I
LIVE ON A FARM WE RENT !! MY HUSBAND & I HAVE A 3 YEAR OLD BOY NAMED
AUSTIN!! I HAD TO QUIT MY JOB AT A LOCAL GREENHOUSE!! I WOULD HAVE
BEEN THERE 10 YEARS THIS OCT. WELL ENOUGH ABOUT BORING ME!! AGIAN
GLAD TO HAVE YOU ON BORED!! THERE ARE LOTS OF GREAT PEOPL HEAR TO
TALK TO WHEN YOU NEED AN EAR!!! TRUST ME!!!!!! I KNOW!!!
MARTHA, 31YRS. OHIO

A-Z
Although things are not perfect
Because of trial or pain
Continue in happy giving
Do not begin to blame
Even when the times are hard
Fierce winds are bound to blow
God is forever able
Hold on to what you know
Imagine life without God's love
Joy would cease to be
Keep thanking God for all the things
Love imparts to you
Move out of "Self Complaining"
No weapon that is known
On earth can yield the power
Prayer can do alone
Quit looking at the future
Redeem the time at hand
Start every day with worship
To "thank" is a command
Until we get blessings
Victorious in the sky
We'll run the race with gratitude
Xpect from God most high
Yes, there will be some bad times and there
will be some good, but...
Zzzzz peacefully at night... you're in the
care of God!
Author Unknown

Dear Debbie,
I know what you mean my son is 20 he did not have an once of fat on him
and he did not fall into any of the so called normal catorgeries. Thank
goodness we found a great nueroligist and he got us to the correct
doctors. He met uas in the E.R. room for after hour taps and gave up his
lunch break many times for taps. Hang in there and know that God is with
you.
Mary Kay

This was written by an 83 year old woman to her friend:
I'm reading more and dusting less. I'm sitting in the yard and
admiring the view without fussing about the weeds in the garden.
I'm spending more time with my family and friends and less time
working. Whenever possible, life should be a pattern of
experiences to savor, not to endure. I'm trying to recognize these
moments now and cherish them.
I'm not "saving" anything; we use our good china and crystal
for every special event such as losing a pound, getting the
sink unstopped, or the first Amaryllis blossom. I wear my good
blazer to the market. My theory is if I look prosperous, I can
shell out $28.49 for one small bag of groceries. I'm not
saving my good perfume for special parties, but wearing it
for clerks in the hardware store and tellers at the bank.
"Someday" and "one of these days" are losing their grip on my
vocabulary. If it's worth seeing or hearing or doing, I want
to see and hear and do it now.
I'm not sure what others would've done had they known that
they wouldn't be here for the tomorrow that we all take for
granted. I think they would have called family members and a
few close friends. They might have called a few former friends
to apologize and mend fences for past squabbles. I like to think
they would have gone out for a Chinese dinner, or for whatever
their favorite food was. I'm guessing; I'll never know.
It's those little things left undone that would make me angry
if I knew my hours were limited. Angry because I hadn't written
certain letters that I intended to write one of these days. Angry
and sorry that I didn't tell my husband and parents often
enough how much I truly love them. I'm trying very hard not to
put off, hold back, or save anything that would add laughter and
luster to our lives. And every morning when I open my eyes,
tell myself that it is special. Every day, every minute, every
breath truly is a gift from God.
If you received this it is because someone cares for you. If
you're too busy to take the few minutes that it takes right now to
forward this, would it be the first time you didn't do the little
thing that would make a difference in your relationships? I can
tell you it certainly won't be the last. Take a few minutes to
send this to a few people you care about, just to let them know
that you're thinking of them. "People say true friends must
always hold hands, but true friends don't need to hold hands
because they know the other hand will always be there."
I don't believe in miracles. I rely on them.

Hello, welcome to the group. My name is Karen H and I was diagnosed with
PPH in June/01 and have been on Tracleer since Sept/01. There is great
information in the group, you came to the right place.
{{{hugs}}}
Karen H

I Don't Wanna
I don't wanna do the dishes
I don't wanna do the wash
I sprinkled clothes a week ago
And now my iron is lost!!
I don't wanna rattle pots
I don't wanna rattle pans
I see the mail light flashin'
I wanna chat with friends!!
Oh the tables need some dustin'
and the floor could sure be mopped
But I know if I get started
there'll be no place to stop
The closets are so full
things are falling off the shelves
I wish for cleaning fairies
and magic little elves.
They could sprinkle fairy dust
and twitch their little nose
The windows would be sparkling
I would have no dirty clothes
Oh I know that I'm just dreamin'
My head is in the sky
I must cook that meat that's greying
and bake that apple pie
The Hubby needs a bath
Doggy needs attention
Oh.. the other way around I mean
my brain is in suspension
I am runnin' round in circles
I am gettin' nothin' done,
I keep thinking of my web
I am missing all the fun!!!
Well I know I'm not addicted
though I hear that all the time
But I guess this stuff can wait on me
Cause Today I'll Be On Line!!!
~~Author Unknown~~

Hi, i am a new member to your community and i just want to say hello
to everybody

I am sending support, hugs, and prayers. I will be sure and add Becky and your
family to our family's prayer list.
Please know that we are thinking of you and sending some "We hope you get some
GREAT news SOON!" vibes.
Love,
Tammy and Parker
www.prayingforparker.com

Well if Scott can try it so can I too ill for anything else today
Subject: [Fwd: Fw: This is absolutely the LAST "pass it on" messages I am
falling for!]

Hi everyone,

I think I am about to go crazy. I am still waiting to find out if our insurance company will approve for Becky to get her transplant evaluation done at Texas Childrens Hosp. They have been sent Becky's medical records for the last 4 months from TCH. I've also asked for Dr. Mallory, Becky's lung dr. and one of the directors of the lung transplant program, to write a letter of medical necessity to send to the insurance company to try to convince them that it is in Becky's best interest medically to have the transplant done there.

Then if that weren't enough, I am still waiting to find out if the TCH cardiac surgeons have decided that it is possible to give Becky a heart transplant or not. Dr. Ivy had told me that the odds were that they would not want to give Becky a lung transplant unless they could give her a heart transplant at the same time as her heart is pretty messed up.

Given that I am not good at waiting and I am sitting by watching Becky get worse over the last few weeks, I am about to lose it here.

Any support anybody can give would be appreciated. Thanks for listening.

Pam (mom to Becky - 18; Johnny - 15; and Laura - 12)

Martha,
It was selfish of me to suggest it. Since losing my Mom & Dad and getting diagnosed with PH I am always attempting to build happy memories for my children and grandchildren.
When I first got sick and couldn't work 2 years ago a family member got me into genealogy. I have gotten a lot of info along with stories from various family members along with pictures from 1860s down. Am currently inputting them into the computer then will burn disks for the kids and their children. They can then add to it and so on.
Being chronically ill has it's challenges and this way I can stay mentally active and creative.
Sorry about this being so long but this has become a passion with me.
With love & laughter. Deborah

I take channel blockers and coumadin plus prilosec for my stomach.
My pressure is 36. But when I take my medicine my stomach
feels like air is jumping in my air passage that
make me short of breath by making my heart feel
like it's skipping a beat. The doctor thinks it is
my reflux problem with my stomach. but I worry if
this part of PPh.

Dear Jean,

Was the 46 from an echocardiogram or some other test? What did they say about the number if it was an echocardiogram? Mine on an echo was 48 at Mayo. Mary from Wyoming

Hi all,
Not sure, but I think that I sent this card twice. Please excuse the
duplicate card.
Tammy J

Howdy Rene..
You will find the link to the MEMBERS pages at the bottem of each
letter.. just look down at the bottem of every letter and you will see
the link....
Heres the links to the PTC Forum again also if you need it..
http://www.delphi.com/PTC_FORUM
http://forums.delphi.com/m/main.asp?sigdir=PTC_FORUM
Vickie

Howdy there
Ok.. now.. everyone knows we have a Members Pages site here in our
group.. and we have some pictures of some of our members. Everyone here
in this group is WELCOME to be on our little web site.. If you would
like to send me a photo and a little story bout yourself.. Id be happy
to add you to that web site.. just send everything to my private email
address vickie-a@... if you dont have a picture on the computor..
its easy to get one scanned.. (you dont need a scanner) just go to your
local printing and copy place and take a photo and have them scan it for
you (its very cheap.. maybe $5 bucks at the most.. ). Dont worry bout
being a model or anything.. we are all JUST NORMAL ppl there.. and if I
can pop my muggshot up there anyone can... :-) The link to this site is
posted at the bottem of EVERY email we get thru this list.. so if anyone
hasnt seen the site.. then just pop over there and have a look at some
of OUR dear Members of this GREAT GROUP!!!!!
Ok .. Now Im waiting for everyones photo.. please send emmmmm!!!!!
Vickie

Anyone who thinks that this desease only affects obese people should
take a look at my son. Max barely weighs 40lbs. soaking wet. All that
site consists of ignorance and should be not viewed at all. Those of us
who suffer with this because of ourselves or a family member should let
them know how ignorant we know them to be.
Debbie & Max

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I DONT SEE ANYTHING HERE, WHATS UP ? BOB

DISCLAIMER: If you are remotely sensitive delete this joke now. Otherwise
proceed...
SUBJECT: Sick Joke!
There was a little girl and her mother walking through the park one day and they
saw two teenagers having sex on a bench.
The little girl says "Mommy, what are they doing?"
The mother hesitates then quickly replies, "Ummm, they are making cakes".
The next day they are at the zoo and the little girl sees two monkeys having
sex. Again she asks her mother "What are they doing?"
The mother replies with the same response, "Making cakes."
The next day the girl says to her mother, "Mommy, you and Daddy were making
cakes in the living room last night, right?"
Shocked, the mother says "How do you know?"
wait for it........
wait for it........
Are you prepared for this????????
here it goes........
She says, "Because I licked the icing off the sofa".

Please join me in welcoming:
pjp@...
roofing@...
salty@...
to the group...so glad you could join us. Please take a moment to
introduce yourselves to the group!
Vickie

Mahatma Gandhi, as you know, walked barefoot most of the time, which produced an
impressive set of calluses on his feet. He also ate very little, which made him
rather frail and with his odd diet, he suffered from bad breath. This made him
what?
A super callused fragile mystic plagued with halitosis!!!

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GREAT GLAD TO KNOW YOUR RESULTS ARE GOOD!!!!
MARTHA,OHIO

Ah, yes, divorce, from the Latin word meaning to
rip out a man's genitals through his wallet.
-Robin Williams
Women complain about premenstrual syndrome,
but I think of it as the only time of the month
that I can be myself.
-Roseanne
Women need a reason to have sex. Men just
need a place.
-Billy Crystal
You can say any foolish thing to a dog, and
the dog will give you a look that says,
"My God, you're right! I never would've
thought of that!"
-Dave Barry
According to a new survey, women say they feel
more comfortable undressing in front of men
than they do undressing in front of other women.
They say that women are too judgmental,
where, of course, men are just grateful.
-Jay Leno
In the last couple of weeks I have seen the
ads for the Wonder Bra.
Is that really a problem in this country? Men
not paying enough attention to women's breasts?
-Jay Leno
We have women in the military, but they don't
put us in the front lines. They don't know
if we can fight, if we can kill. I think we can.
All the general has to do is walk over to the
women and say,"You see the enemy over there?
They say you look fat in those uniforms."
-Elayne Boosler
There's a new medical crisis. Doctors are
reporting that many men are having allergic
reactions to latex condoms.
They say they cause severe swelling.
So what's the problem?
-Jay Leno
When the sun comes up, I have morals again.
-Elayne Boosler
If you can't beat them, arrange to have them
beaten.
-George Carlin
Instead of getting married again, I'm going to
find a woman I don't like and give her a house.
-Lewis Grizzard
The problem with the designated driver
program, it's not a desirable job. But if you
ever get sucked into doing it, have fun with
it. At the end of the night, drop them off at the
wrong house.
-Jeff Foxworthy
See, the problem is that God gives men a brain and
a penis, and only enough blood to run one at a time.
-Robin Williams

DEBORAH, THANKS YESW I HAVE SAVED SOME OUTFITS I HAVE NOT WROTE
ANYTHING WITH THEM THAT A GOOD IDEA!! I TRIED TO KEEP AN OUTFIT FROM
CLOSE FAMILY MEMBERS SO HE COULD REMEMBER THE PERSON FROM THE FAMILY
BY THE CLOTHES THEY GAVE TO HIM!!PLUS EVERY PROFESSIONAL PICTURE I'VE
HAD DONE FOR HIM I'VE KEEPED THE OUTFIT ALSO!!SO HE HAS SOME FROM
DIFFERENT AGES!! THANKS AGAIN!!!
MARTHA,OHIO

I have lost the link to Vicki's page and the chat room. The link I have for
some reason is corrupt. Would someone send it to me.
Thanks,
Renee
PS Deloris, my headache is better, so it was prob. just a really bad migraine.
I have a neurology apt on Tuesday to have pressure checked out again. Fun!

-----Subject: Just in case you don't feel old enough already

Bill, Thank you for updating us about Shannon's surgery. I am sure this was very stressful for all of us. I wish her a speedy recovery. Please tell her I am thinking about her. Ice cream, maybe? Love, Donna, Kari's Mom
"O'Donnell, Bill" <odonnellw@...

Just wanted to let people know, Shannon had her tonsils and adenoids out last Thursday. The procedure went very well. The kept her intubated over night as a precaution. The tonsils were the size of a half dollar. Normal tonsils are the size of a dime or nickel in a twelve year old. Because her blood pressure was normal they kept her in Friday night to adjust her nifedipine. She is now on one 60mg extended release pill once a day. This is up from one 30mg extended release pill once a day and 7.5 mg three times a day. She is also on Flolan and Revatio. Shannon is now home resting as comfortably as can be expected.
Bill from Boston

Mrs. Webster's Dictionary
Argument (ar*gyou*ment) n. A discussion that occurs when you're
right, but he just hasn't realized it yet.
Balance the checkbook (bal*ens da chek*buk) v. To go to the cash
machine and hit "inquire."
Bar-be-que (bar-bi-q) n. You bought groceries, washed lettuce, chopped
tomatoes, diced onions, marinated meat and cleaned everything up, but
he "made dinner."
Cantaloupe (kant*e*lope) n. Gotta get married in a church.
Clothes dryer (kloze dri*yer) n. An appliance designed to eat socks.
Computer (kom-pew-ter) n. The one thing in a woman's life that does
exactly what she tells it to.
Diet Soda (dy*it so*da) n. A drink you buy at a convenience store to
go with a half pound bag of peanut M&Ms.
Four Food Groups (for food groups) n. Chocolate, wine coolers, potato
chips & ice cream.
Home (hom) n. A dwelling that ideally has the same number of bathrooms
as people.
Hair Dresser (hare dres*er) n. Someone who is able to create a style
you will never be able to duplicate again. See "Magician."
Waterproof Mascara (wah*tr*pruf mas*kar*ah) n. Comes off if you cry,
shower, or swim, but will not come off if you try to remove it.

What are we up to now...three Julie s on this list?!
Welcome Julie!
Julie P......does this mean I should start calling myself Jules...to
limit the confusion? If I'm not mistaken...your last name starts with
"P" too? *LOL*
Jules

Just wanted to let people know, Shannon had her tonsils and adenoids out last Thursday. The procedure went very well. The kept her intubated over night as a precaution. The tonsils were the size of a half dollar. Normal tonsils are the size of a dime or nickel in a twelve year old. Because her blood pressure was normal they kept her in Friday night to adjust her nifedipine. She is now on one 60mg extended release pill once a day. This is up from one 30mg extended release pill once a day and 7.5 mg three times a day. She is also on Flolan and Revatio. Shannon is now home resting as comfortably as can be expected.

Bill from Boston

Hi all,
Mel's pressure is back up to a 280, so much for going into
remission.......We did notice her eyes were having a problem focasing
this week,.....that darn 6th nerve palsy caused by this wonderful
illness. She also seemed to be zooming out more....I guess 5 weeks is
to long to go between her taps. We are going to try to hold out for 4
weeks and see how we do next time!!!
Dan gave the neuro the drs names that Pat shared, she said she knew of
them and would do some homework. That's what I respect most about this
dr., she doesn't pretend to know everything. You can see how upset she
gets when Melanie's pressure goes up (just like a Mommy)....
My 5 yr old followed Mel around the house (like a puppy) all afternoon
asking her if she wanted any pain meds.....talk about heart wrenching.
The only pain med she had since she was at home was a tylenol that I
gave her at bedtime......
Waiting for the storms to arrive in stormy southern California!!!
Suzin

[Unable to display image]
This is for all the Mom's out there....
Mom's
This is for all the mothers who DIDN'T win Mother of the Year in 1999. All
the runners-up, and all of the "wannabes". The mothers too tired to enter or
too busy to care.
This is for all the mothers who froze their buns off on metal bleachers at
soccer games Friday night instead of watching from cars, so that when their
kids asked, "Did you see my goal?" they could say, "Of course, wouldn't have
missed it for the world," and mean it.
This is for all the mothers who have sat up all night with sick toddlers in
their arms, wiping up barf laced with Oscar Mayer wieners and cherry Kool-Aid
saying, "It's OK honey, Mommy's here."
This is for all the mothers of Kosovo who fled in the night and can't find
their children.
This is for the mothers who gave birth to babies they'll never see. The
mothers who took those babies and made homes for them.
For all the mothers of the victims of the Colorado shooting, and the mothers
of the murderers. For the mothers of the survivors, and the mothers who sat
in front of their TV's in horror, hugging their child who just came home from
school, safely.
For all the mothers who run carpools, make cookies and sew Halloween
costumes. And, all the mothers who DON'T.
What makes a good mother anyway? Is it patience? Compassion? Broad hips?
The ability to nurse a baby, cook dinner, sew a button on a shirt, all at the
same time? Or is it heart? Is it the ache you feel when you watch your son
or daughter disappear down the street, walking to school alone for the very
first time? The jolt that takes you from sleep to dread, from bed to crib at
2 a.m., to put your hand on the back of a sleeping baby? The need to flee
from wherever you are and hug your child when you hear news of a school
shooting, a fire, a car accident, a baby dying?
I think so.
So this is for all the mothers who sat down with their children and
explained all about making babies. And for all the mothers who wanted to,
but just couldn't.
This is for reading "Goodnight, Moon" twice a night for a year. And then
reading it again - "Just one more time".
This is for all the mothers who mess up. Who yell at their kids in the
grocery store, and swat them in despair, and stomp their feet like a tired 2
year old who wants ice cream before dinner.
This is for all the mothers who taught their daughters to tie their
shoelaces before they started school. And for all the mothers who opted for
Velcro instead.
For all the mothers who bite their lips - sometimes until they bleed - when
their 14 year old dye their hair green.
Who lock themselves in the bathroom when babies keep crying and won't stop.
This is for all the mothers who show up at work with spit-up in their hair,
milk stains on their blouses, and diapers in their purse.
This is for all the mothers who teach their sons to cook and their daughters
to sink a jump shot.
This is for all mothers whose heads turn automatically when a little voice
calls "Mom?" in a crowd, even though they know their own offspring are at
home.
This is for mothers who put pinwheels and teddy bears on their children's
graves.
This is for mothers whose children have gone astray, who can't find the
words to reach them.
This is for all the mothers who sent their sons to school with stomachaches,
assuring them they'd be just FINE once they got there, only to get calls from
the school nurse and hour later asking them to please pick them up. Right
away!
This is for young mothers stumbling through diaper changes and sleep
deprivation. And mature mothers learning to let go.
For working mothers and stay-at-home mothers. Single mothers and married
mothers. Mothers with money, mothers without.
This is for you all.
So hang in there â¦
"Home is what catches us when we fall - and we all fall."
Please pass along to all the moms in your life.

Hi everyone! My name is Julie, I am 37, married with 6 children and live
in Perth, Western Australia. I was diagnosed with Benign Intracranial
Hypertensin (how PTC is known over here) in June this year. I had had a
"strange feeling!" in my head since the beginning of the year but managed
to ignore it until I started noticing visual distortions. I went to my
optometrist who sent me to an eye specialist who diagnosed the condition
straight away as he had seen it before. I had a CT scan to rule out tumour
and was sent to a Neurologist the next day. He confirmed the diagnosis and
prescribed Diamox and 24 hours later I was having the 1st of a series of
Lumbar Punctures! After 11 L.P's with pressures ranging from very high to
quite normal but very unstable, my Neurologist decided that my condition
was not going to stabilize by itself and rather than have continuous L.P's,
surgery was next option. As I type I am recovering from surgery and am now
the owner of an L.P. shunt. So far the relief is amazing and I pray it
continues that way. Any advice or information about "Life with an L.P.
shunt" would be most welcome. Thanks for the support, Julie.

Martha,
I know selling your son's baby clothes will be difficult. If you haven't thought of it already please save some cute outfits of varying sizes and pack them away. I did this with my son's and then my daughter's things and now that they are having families they adore putting their little one's in them.
I also packed a short handwritten note with each item I saved, telling them of my feelings the first day they wore it etc...My mother started the tradition with my preemie baby clothes from 55 years ago. Mom transcended 10 years ago I miss her more & more everyday but she left us memories as we unpack the few items that she saved for my children and my grandchildren. (I have a sweater she knit at age 9 that 3 generations has worn)
My daughter & I unpacked baby clothes last night. She is expecting another little girl this summer. Seeing a few "special' items led to loads of tears and laughter.
Good luck with your endeavor.
With love, faith, joy & laughter. Deborah

Subject: Mouse Balls
IBM and Mouse balls:
What follows is an actual alert to IBM Field Engineers
that went out to all IBM branch offices. The person
who wrote it was very serious. The rest of us may
find it funny.
Abstract: Mouse balls available as FRU (Field
Replacement Unit)
Mouse balls are now available as FRU. Therefore if a
mouse fails to operate, or should it perform
erratically, it may need a ball replacement. Because
of the delicate nature of this procedure, replacement
of mouse balls should only be attempted by properly
trained personnel.
Before proceeding, determine the type of mouse balls
by examining the underside of the mouse. Domestic
balls will be larger and harder than foreign balls.
Ball removal procedures differ depending upon
manufacturer of the mouse. Foreign balls can be
replaced using the pop-off method. Domestic balls are
replaced using the twist-off method.
Mouse balls are not usually static-sensitive.
However, excessive handling can result in sudden
discharge.
Upon completion of ball replacement, the mouse may be
used immediately. It is recommended that each
replacer have a spare set of balls for maintaining
optimum customer satisfaction, and that any customer
missing his balls should suspect local personnel of
removing these necessary items.
To re-order specify one of the following:
P/N 33F8462 - Domestic mouse balls
P/N 33F8461 - Foreign mouse balls.
End of message
====================
A married couple was in a terrible accident where the
woman's face was severely burned. The doctor told the
husband that they couldn't graft any skin from her
body because she was too thin, so the husband offered
to donate some of his own skin. However, the only
skin on his body that the doctor felt was suitable
would have to come from his buttocks. The husband and
wife agreed that they would tell no one about where
the skin came from, and requested that the doctor also
honor their secret. After all, this was a very
delicate matter.
After the surgery was completed, everyone was
astounded at the woman's new beauty. She looked more
beautiful than she ever had before! All her friends
and relatives just went on and on about her youthful
beauty!
One day, as she was alone with her husband, she was
overcome with emotion at his sacrifice.
She said, "Dear, I just want to thank you for
everything you did for me. There is no way I could
ever repay you."
"My darling," he replied, "I get all the thanks I need
every time I see your mother kiss you on the cheek."
============================
A highway patrolman pulled alongside a speeding car on
the freeway.
Glancing at the car, he was astounded to see that the
blonde behind the wheel was knitting! Realizing that
she was oblivious to his flashing lights and siren,
the trooper cranked down his window, turned on his
bullhorn and yelled, "PULLOVER!"
"NO," the blonde yelled back. "IT'S A SCARF!"

Hi everyone,
Have any of you heard of or gone to Dr. Elliott in Salt Lake City?
If so what do you know about him?
May the Lord Bless,
Betsy
Betsy
You could not find a more kind and caring doctor than Dr. Elliot. He is
dedicated to PH and he is great. I do not see him as my doc but he is on the
PHA Board of Directors and he is head of our Scientific Advisory Board which
means he is working hard.
Good luck. He is a great doc.
SallyMInGA

Pulsing optic nerves:
no, not something you see. the Dr. looks behind your eyes with the
little light thingy they have (the name of the little machine/mechanism
is beyond me, but I'm sure you know what I'm talking about?) .... and
looks at my optic nerves. when he sees the nerves, they are either
pulsing (normal people's are) or not pulsing, meaning the pressure is
high, and pushing on the nerves.... that's why I don't have any vision
loss at all, I see my neuro-opt AT LEAST once a month right now, and any
time he sees pressure on my optic nerves (aka no pulses), he does a
tap... with all this shunt mess right now, who knows... but we'll see
how things are going when the infection's gone.
sarah C (poet)
Date: Thu, 03 Dec 1998 21:14:42 -0600
From: Jocelyn Anderson <gldnhair@...
To: ptc-support-group@onelist.com
Reply-to: ptc-support-group@onelist.com
Subject: [PTC-Support-Group] Re: (no subject)
From: Jocelyn Anderson <gldnhair@...
Pulsing optic nerves?? Is this by any chance something you see??? I have
noticed a pulsing in my vision- not of what I am looking at but more of
a transparent bright halotype thing I can see sometimes if I am looking
at some surface that is all the same- I usually notice it when I am
sitting in a bathroom stall- looking at the door!
Am I losing it???
(done lost it, already I know...)
BTW thought I'd share a little about my surgical rotation this week..
basically I stood in a corner and watched stuff... So I got to watch a
couple of neuro cases- a craniotomy and the installation of a lumbar
cistern- a sort of access device to the spinal fluid... used in this
case to administer chemotherapy agents to a patient with cancer in her
spinal cord. ANYHOW- the first part of that procedure is a lumbar
puncture... so I got to see one from the other side! YIKES! The
patient was conscious, although sedated and the area had a local of
course. But she was not too comfortable while they were trying to
strike "oil" or CSF. Once the stylet- which introduces the needle into
the lumbar space gets to the right spot, it is pulled off and only a
fine tube (catheter) remains. That's why we can change position -like
from belly to side when under an x-ray- and not really feel anything
back there. But those docs really have to poke and push to hit the
right spot! Don't we all know that already!
:)
--
-Jocelyn_
ICQ #9458429
"And I would have succeeded
if it hadn't been for those
meddling kids and their dog!"
-Every bad guy on Scooby Doo

Hello All,

The Friendship Ball...keep it rolling!
Throw it back to someone else who means something to
you!
The Friendship Ball
A ball
is a circle, No
beginning, and no end.
It keeps us together Like
our Circle of Friends But
the
treasure inside for you to see
is the treasure of friendship
You've granted to me.
Today I pass the
friendship ball