Re: [PHAcommunity] Off Topic - 12 year Anniversary with PPH

2008-11-30 20:27:02

<P
that does give me a lot of hope. I've had pph now for
about two years, doing well. Hope you continue doing
well. Your right never give up hope.
<P
<P
&lt;skmaddox@...&gt;</I
<BLOCKQUOTE style="PADDING-LEFT: 5px; MARGIN-LEFT:
5px; BORDER-LEFT: #1010ff 2px solid"
wanted to let you guys know that there is hope out
there. Today marks my 12th anniversary of being
diagnosed with PPH. Each day is a miracle but today is
really special. I got the you will live 6 months,
maybe a year speech. I have had many milestones.
Graduating college, marrying a jerk and then divorcing
him, a career as an insurance agent for a while,
marrying my wonderful husband and being mom to my step
son, Brandon and finally teaching school and attending
graduate school. I know I am very blessed and I just
want to let everyone know that there is hope. Don't
ever give up.<BR
the CCB's didnt work I would have to have a heart and
lung transplant asap. Thanks be to God that it worked.
Today, we are so lucky to have researchers and drug
companies that are willing to make orphan drugs for
us. That is where the hope is.<BR
Care,<BR
of this message have been
removed]<BR
banner|**| --
<TABLE cellSpacing=0 cellPadding=2 border=0
<TBODY
<TR bgColor=#ffffcc

book for kids on cath asd closures

2008-11-30 20:09:24

Jennifer, can you send me the name of the book? Perhaps this is something
that we should have in our CHDbookstore at www.kidswithheart.org Thank you
so much!
Michelle L. Rintamaki (mom to John, 20, tof repair Jan 1990, pulmonary valve
replacement August 2005)
Kids With Heart National Assn for Children's Heart Disorders, Inc
P O Box 12504
Green Bay WI 54304-2604
1-800-538-5390 phone/ fax (U.S. only)
920-498-0058 phone/ fax

Make everyday congenital heart defect awareness day
Check out the AWARENESS STORE at
www.kidswithheart.org

Too Healthy?

2008-11-30 14:32:49

Kathleen,
test program.
Oh yes, dont you just love it when they say you are too healthy. Do you jump
for joy
Its just like teaching with this lady in alternative school or "the school
of hard knocks". I told her one day that the kids thought she was mean and
reminded them of the devil. She jumped for joy because that is what she
wanted them to think.
I guess it is how you look at things.
Take Care
SallyMInGA

Re: [PHA_Parents] Bill

2008-11-30 10:00:41

I was thrilled to hear that Shannon is still continuing to do well....way to go.....celeste

Off Topic - 12 year Anniversary with PPH

2008-11-29 21:24:22

Hi
Just wanted to let you guys know that there is hope out there. Today marks my
12th anniversary of being diagnosed with PPH. Each day is a miracle but today is
really special. I got the you will live 6 months, maybe a year speech. I have
had many milestones. Graduating college, marrying a jerk and then divorcing him,
a career as an insurance agent for a while, marrying my wonderful husband and
being mom to my step son, Brandon and finally teaching school and attending
graduate school. I know I am very blessed and I just want to let everyone know
that there is hope. Don't ever give up.
When i was diagnosed, they told me if the CCB's didnt work I would have to have
a heart and lung transplant asap. Thanks be to God that it worked. Today, we are
so lucky to have researchers and drug companies that are willing to make orphan
drugs for us. That is where the hope is.
Take Care,
SallyMInGA

for Heidi remodulin/baths

2008-11-29 13:33:26

hi heidi...this is how we did bath time...

when it was time to change the site...

that is when Noel took her bath. at first it was every three days..and i would plastic over the site if she wanted to take an extra shower...but then eventually i changed every day....while it was out she took a bath...i let her play and really enjoy it...remod has a much longer life in the body..can't remember the right words anymore....and they can go for a bit without it......at first noel could go longer...eventually i could not turn it off..

then i would have everything ready to go for the change....when it was time to shoot in the cath....i would have everything in my hand...shoot it in and place the bandage over it very very quick..

Noel was older so it was probably easier...but if you have everything ready before hand and have it all in your hands when you get to gabe..it will be much easier to get it done super quick..

hope this helps....celeste

Re: [PHAcommunity] to Jean...about droug

2008-11-29 11:01:41

<P
<P
cardiologist (at least more of them) are not the ones
to treat PH, but the PH specialist,&nbsp; the !st
physician I saw, was a cardiologist and he said that
nothing would help me and it last like 2 years of
life, any way after I was to specilist in PH, he order
a catheterism, they used nitric oxide to observe how
the pressure respond an after they start the droug you
really need, so donīt be afraid an go to the PH
specialist the clever thing to do.
<P
<P
<P
<P
&lt;mommatocharlie@...&gt;</I
<BLOCKQUOTE style="PADDING-LEFT: 5px; MARGIN-LEFT:
5px; BORDER-LEFT: #1010ff 2px solid"
reading the various e-mails with much interest. I was
diagnosed last fall with PH--probably primary--no know
complicating factors. So far, I've had two echoes and
a chemical stress test, no clogged arteries. But the
only medication I'm taking from cardiology is Altace,
which gives me a hacky dry cough--known side effect. I
take a diuretic and another BP medication. I see my
cardiologist again in a week or so. Nothing has been
said about a PH specialist (the closest ones are in
Kansas City, at a hospital I refuse to go to). Do I
need to have some questions for either my internist or
cardiologist next time I visit? I see that many of you
went on powerful meds within a month of your
diagnosis, and am wondering if I need to be more
proactive (or
aggressive).<BR

Re: for Mitzi and Bill and everyone, you've all been awesome!

2008-11-29 06:13:30

Bill, wow, I am so happy to hear your "little" girl is doing so well.
I can't believe there could be a day when Gabe can swallow his pills.
(I'm really naughty and let him take them with a load of chocolate
chips!!!) I've tried everything else. Mixing them in pudding, sauces,
syrups, everything! I did like Jennifer suggested and don't ask if he
wants to, just say, ok it's time! Then I really praise him and
acknowledge what a good boy he has been! Has your daughter been on
all these meds the whole 7 years??
Mitzi--Gabe turned 2 Nov 4th! Him and Ava are close!! Bath time is
covering him in Aquaguard and gauze and hoping he won't lay on his
belly like his sisters do (or he used to!) He's been good so far.
Last night was tough cause he wanted to do everything his sister was
doing so I was constantly yelling at them both. I'm still entirely
too nervous! (Thank you for the pinning idea, that will help!!)
Gabe's ph was discovered after his open heart surgery Jan 7th when
they'd send him home and he'd get sick instantly. They finally did a
cath and his pressures were in the upper 120s where his other
pressures were lower 120s and upper 110s. His lung pressures were
over his others. (Maybe that's how they all are when they have ph...I
don't know) They put the Broviac in 2 days later and started the
Remodulin that night. He had been in the hospital on and off a month
from surgery to figuring out his PH. Now we go to the Ph specialist
every 2 or 3 weeks for a while and he'll receive several more caths
to see how he's doing and then see if they can schedule his next
surgery. What dose of Flolan is Ava at?? Do they increase it still or
lower it or keep it the same?? Did it ever make her sick? Gabe's is
going to be increased (remod.) every other cassette change and they
don't even know how high they're going to go, they won't stop I guess
until he has severe side effects!!! WHY!!!??? He's at 10 right now,
will go to 11 today and I have a sheet that lists up to 30 I think.
But then his ph doc says most adult patients are at 40, so why should
my little 2 year old be that high!! I just wish I understood more, or
they could at least give me a definitive answer. Right now it's
a "we'll see" answer... I HATE THAT ANSWER!!! Sorry. I'm just soooo
not okay with all this yet. I can't tell you how much better I feel
knowing there are people out there that can help me!
All of you have given me sooooo much more hope then "research" has
for his life being normal!! I've spent a lot of time crying about the
things that won't be normal for him. I am SOOOOOO thankful he's on
Remodulin rather then Flolan!! How do you who's kids are on Flolan
handle it?? Had you tried Remodulin and it didn't work as well?? The
1/2 life on that frigthens me!! When your child gets a cold how do
they do!?? Before Gabe's colds would always get him in trouble.
Nearly every other cold would turn to pneumonia and send him to the
hospital for a week at a time. I am TERRIFIED of the first cold! We
have been asked to stay at a lower elevation even though my support
system is up higher. We have been able to sort of restart in Phx
rather then where we were. My oldest daughter is 7 and wants to
finish school up there, so she's living with my parents up there. Our
PH doctor is really great but I feel like he has no idea what I'm
going through and I'm a mess 1/2 the time. My life was instantly
turned upside down and although I'm sooo happy my son is here and
being saved, I'm still overwhelmed with the load that's been dumped
on us.
I could go on all day! In fact I might do that for a while. Just
trying to get a hang of all this!
Again, thank you. So much!~ I can't stress it enough.
I'll probably be a posting maniac. Hope you all don't mind!
Heidi
Gabe--11-05, Remodulin, sildenifil, coumadin, lasix
Leah and Mag the bigs

Re: [PHAcommunity] Jackie GA

2008-11-28 21:59:34

Jackie,
Often times I feel as you do about the Tracleer. The dynamic seems to go
something like this: Usually, it seems as if it is "working" or doing me some
good, but then there are days when I wonder if it is helping at all. Inevitably,
when that happens it's because I have "overdone" it (physically in some way) so
that then I have to "rest up." Those resting days are the days when I wonder
what good the medicine is doing. I sleep and nap as much as I can for a couple
of days, and then I start feeling better. As the days pass and I take better
care of myself, I start to feel pretty good and so I think the medication must
be helping. As long as I get plenty of rest (say 8-10 hours of sleep), as the
days pass I'll get to the point that I'm sure the Tracleer is working because I
feel pretty good. If I'm not careful I will overdo it again, and so forth.
So I guess all in all it seems to be working for me as long as I do my part,
i.e. get enough sleep and don't do too much physically. Sometimes this part is
tricky, because when I feel good it doesn't seem like I am doing too much until
it's too late. Obviously, I am still in the learning phase of the treatment,
trying to find the proper balance between realizing the benefits of the medicine
and doing too much. I'm sure (in time) I will find out what works and what
doesn't and accept my limitations.
I think that the Tracleer helped me to be able to go on the retreat and
participate fairly "normally," but I also think I pushed myself beyond what I
should have so that in the end I was worn out. Had I passed on the sweat lodge
like I said I was going to, I'd have been fine. But that pride and ego slipped
in and said, "Gee Don, if you don't do this thing you'll be the only one who is
not participating. It only last for two hours. You can do "anything" for two
hours. C'mon." And so I went for it and it was physically demanding, BIG TIME.
And I paid the price.
But that was last Sunday. I'm beginning to feel better again, but it is taking a
lot longer this time to get back to "normal," that is, feeling better and
feeling like the med is working. But... I am getting there... I think. Hope this
helps....
Peace, Love, Hope,
Don Newman

Re: Shunt vs. ONSF

2008-11-28 19:55:18

Thanks Donna!
I'm glad everything's going so well for you!
Julie P.
<<My choice has worked out great for me so far. The
real me is back! Donna in Maine

Re: for Mitzi

2008-11-28 13:32:57

Thank you all so much for the welcome.
I am so grateful to be able to know a group of parents living with
and experienced with PH patients. I'm so sad to read so many of your
stories. It is hard to read and not get really emotional. I have to
stop during all of your posts and bother my little boy, (who has no
time for his coddling mommy!) I want so much to believe this isn't
how it's going to be forever! Did any of you, (or all of you) feel
that way?
I just find it hard to come to terms with a condition that seems so
unknown!!! I feel like Gabe is the test baby for all the possible
treatments to come! I know that these drugs have been around and been
used, but I wish I knew more success and happy endings to all the
drugs he's being given. I'm so worried he'll become dependent on the
Remodulin and never come off of it. I hate that he's on Coumadin and
Viagra. I guess I'm just wishing I knew that they knew what they're
doing. And I feel like they don't!
Mitzi--Ava is soooo beautiful. What a sweet little girl. When did she
turn 2?? How did you find out about all her conditions?
Jan--Wow!! 2 boys with special needs!! I hope you have family and
friends that are helping you. Is your oldest pretty easy to care for
now?? I hope you have lots of support around you. I'm a single mom
right now by choice. I know how hard it is to cope with it all. I
have 2 girls as well as Gabe and thankfully completely supportive
parents, but it doesn't make it easier. I'm wishing the best for you
and your family.
Pam--You should be pre-occupied right now. that's a lot to think
about. I can TOTALLY relate to being angry with everyone in the
medical field. I feel for you and your daughter. I hope it all is
worth it in a few weeks. I know it will be. I just know it.
Jennifer--you're story really touched me and made me pretty upset at
the same time. I'm soooo scared. I can't even tell you how much I
don't want my little boy to leave me. I feel like I need him so much.
I'm sure you know. I just can't imagine. I thank you for all your
ideas. I love them. I will definitely be able to use them. Thank you
so much for sharing your son's story!
Celeste--I'd love to hear more about your daughter too. Have you
always lived in NY? It's really nice here. I'm dreading summer
though. Where I'm from it's not nearly as hot.
Well, we're doing well. Gabe really is a healthy little boy. I'm so
thankful for how well he is doing. I just want to hear he's fully
recovered. (He was only diagnosed Jan 31st.) I'm a little impatient.
I want to adjust to all this. Like right now. His site looks
horrible. I had the loop and it came undone and is tugging on him.
His chevron (or whatever that taping technique is called) ripped and
now he's saying ow all the time. I don't want to redress him as often
as I have been. But I don't want to risk him pulling his iv out
either. He's had it about 3 weeks?? I think. But I know I'll just
need to moan and groan a lot. I hope you all won't mind. I won't try
to obsess. But I know it'll feel good for someone to know EXACTLY
what I'm upset with. And I'll be relieved to know other people are
having the same types of moments.
Anyway, I thank you all again. I am grateful for finding you.
Heidi
mom to
Gabe 11-05
Leah 9-03
Mag 9-00

Re: Hello all

2008-11-28 09:58:17

Thanks Betty for answering the questions. It is helpful to know more
about our members. I think there are some other members that may
have had some addiction problems too. It is wonderful that you are
sober and doing so well on the drugs. I thought most of the time
when babies have this disease it is really serious from the outset.
Every case is different it seems and everyone has a story to tell.
I live at 6,000 ft but don't like to go much higher. Sometimes I
have to turn the oxygen higher if at higher altitudes for any period
time. Well, good to hear from you. Talk to you later.
May the Lord Bless,
Betsy

very happy to be among all. I live by the beach in California. The
highest alltitude that I still feel well is 3200. I didn't go any
higher because I did not want to take the chance of gettin sick while
I was visiting my mother. I'm the youngest of seven and I was born
with the PH and never knew that until I was diagnois in 1999. The
doctor said I would of got sick in my old age but because of my drug
and alcoholic addiction and smoking, PPH came upon me at the age of
46. I have a sobriety of 3 year & 10 months. I very happy being on
Flolan because it makes me feel great. I been on Traceleer for 1
month and I decreased already 3ng. The doctor said I will always be
on both for the rest of my life. That's okay because I was very sick
before. Thanks again. Betty

Re: Shunts vs. ONSF

2008-11-27 19:05:35

<<Just curious... why do you really not want a shunt?
Lara,
Thanks for your input. I have already had the ONSF surgery (4 years
ago), but my doc is suggesting the same surgery from a different
angle...my guess is to allow even more fluid through.
My first ONSF was a great success. I regained nearly all of the vision
I had lost, and have had either no symptoms or very mild symptoms since
then.
I don't want a shunt because frankly, having something in my body that
may or may not work, that might have to have revisions scares the heck
out of me. I've heard too many horror stories about shunts and the
failure rates (don't get me wrong, I know that many people have great
success with them too).
Just out of curiosity on my side...why is it that you considered the
ONSF more invasive than a shunt? I always considered the opposite to be
true.
Julie

Re: Melanie and family update

2008-11-27 14:01:43

Suzin,
I'm keeping Mel and your family in my prayers. I know '99 will be
better. Hang in there. 8) Bettianne

Hello all

2008-11-27 13:19:45

Hello Amy, Betsy and Don Newman
How's everyone doing today? Thank you for the big welcome and I am very happy
to be among all. I live by the beach in California. The highest alltitude that
I still feel well is 3200. I didn't go any higher because I did not want to
take the chance of gettin sick while I was visiting my mother. I'm the youngest
of seven and I was born with the PH and never knew that until I was diagnois in
1999. The doctor said I would of got sick in my old age but because of my drug
and alcoholic addiction and smoking, PPH came upon me at the age of 46. I have
a sobriety of 3 year & 10 months. I very happy being on Flolan because it makes
me feel great. I been on Traceleer for 1 month and I decreased already 3ng.
The doctor said I will always be on both for the rest of my life. That's okay
because I was very sick before. Thanks again. Betty

Re: [PHAcommunity] sitaxsentan study/Sally

2008-11-27 02:31:25

Hi Sally,
What have your pressures been running (ballpark?) Have they been checked at
all since you started the sitaxantan study??? I used to live in Houston -
Do you see Dr. Frost? Smart woman - very ambitious. I will keep you in
prayer that your tests go well - are you having a RHC soon??? Do you go to
methodist? Thats where my heart cath was when I was there - I had to stay
there 3 days before they got me into the ICU to do the cath - very strange.
Best of luck - let me know what happens, okay???
Blessings,
Deb

Melanie and family update

2008-11-27 01:48:12

Hi Everyone,
I hope everyone's new year is off to a better start than ours.
Dan's car has been in the shop for about 3 weeks on and off. Finally
got it back yesterday afternoon with several chips off the passenger
side door. Funny, didn't have it when it was bought in.......back to
the shop on Monday........
Melanie had her spinal tap on Wednesday. 4 weeks this time instead of
6, her pressure opened at a 28(280) again......still too high.... Our
pediatric neuro, from UCLA said she would get in touch with the
neuro-optha at USC as to what the next step should be....She still only
weighs 55 pounds and is on 1250 mg of diamox/day. She had her usual 1/2
percoset in the recovery room, but surprised me when she asked for a
pain killer that evening, instead of her usual tylenol. I don't know
why but this tap seems to have kicked her more than any other tap.
She's been relaxing on the rollaway bed I have set up in the living
room. Remember this is the kid who usually asks to play outside or go
swimming after her tap.........
Josh, (only 5 yrs old), looks out for Melanie. He goes into the fridge
and makes sure she has a cold water bottle and always asks her if she
needs any medicine....He even tucked her in yesterday and kissed her on
her head..(enough to bring tears to this mommy's eyes)
Dan is still fighting his so called cold. Mel's ped. neuro at the time
of Mel's tap gave him a perscription.........
Thats the way we're going to end 1998...Hopefully 1999 will be
better.....
Hope everyone has a Healthy and Happy New Year!!!!!!
Thanks for all the cards and gifts. The kids loved everything. I've
been very slow getting out thank-you cards.
Fondly,
Suzin

Re: [PHAcommunity] sitaxsentan study/Deb

2008-11-26 12:16:06

Dear Deb,
I am in the sitaxsentan study in Houston. So far I have not noticed much of
a difference. I am almost done with the study, and will find out in June if
the pressures in my heart have changed. I don't know. I am going to
Houston on Thurs. for a checkup. She was very concerned about me, and
wanted to see me 3 weeks sooner, so I don't know.
Anyway, if I find out anything else about the drug, I will let the group
know.
Sally in TX

Re: [PHA_Parents] for Mitzi

2008-11-26 09:21:11

Hi Mitzi,

I am glad to hear Ava is doing so well! I found one of those children books for you about the little boy who goes to the cath lab to get his ASD closed. It is written like a children's story and I thought you could read it to Ava when she gets old enough. I will mail it to you if you give me your address. You can email it to me off list if you like. There was a congenital heart defect support group that met at the hospital on Valentine's Day and the staff were invited to a Valentine's party and they had a few of these books there and they were handing them out so I got one for you.

The Valentine's party was fun because I got to see some of my former patients who were doing well. Usually I don't get to see them unless they have problems and come back into the hospital.

I am so glad to hear that Ava is doing well.

Jennifer
Hi Heidi!
Good for you for joining this wonderful group...you will quickly make life long friends that you can call on 24/7. We all have had different experiences with our children and PH, that is what makes it such a neat group!

First, I can relate SO much to your troubles and frustrations.....My daughter, Ava, is 2 and is on Flolan. She just came off oxygen 24/7. She went on Flolan when she was 1 and it has been the longest, hardest, craziest year of our lives! She is doing well and we are grateful. She had/has a congential heart defect also.
It took me 6 weeks to do a dressing change (without the visiting nurse) and it was probably 2 months before Ava had an official tub...I was so scared! But now, things are easier, not perfect, but easier. I have been able to breathe a bit, but it took a long time :)
I could sit and write all day about having a 2 year old with PH and on Flolan!!! Lots of stories!! Please email me any time you want or call
mitzgeof@...
207-647-0921
and check out Ava's carepage:
www.carepages.com
and register and view the page under : avaann (one word)

I hope you are doing well and we can't wait to hear more about Gabe!

Heading to chat room!!

2008-11-26 07:06:38

It's 10:25pm EST and I'm heading (or going to try to) to Talkcity's
chatroom for a few. ANYONE WANT TO CHAT? See you tere I hope.
Lori and or Pat

Re: [PHAcommunity] Glad to Hear Your News

2008-11-26 00:36:04

Hey Deb and Bonita,
Thanks for your replies.
Deb, you asked how I feel about going on Tracleer. I'm not really sure. I
was not thrilled about the prospect of going on either drug, but then after
talking with my PH nurse and Dr.s it seemed like sitaxsentan might be worth
trying. Apparently they "have the feeling" that sitaxsentan may end up
being even more effective than the Tracleer....but that still has to be
proven through studies. They are very similar, but apparently the
Sitaxsentan is a more specific endothelin receptor antagonist (I think
that's the term they use....I'm not really sure). There are two kinds of
endothelin receptors (someone please correct me if I'm wrong). Bosentan (or
Tracleer) works on both of them. Sitaxsentan only works on one of them.
Anyway....if Tracleer can actually help to improve my pressures, then I'm
all for it. So...I'm going to try it and see what happens. Will keep you
updated.
Bonita...thanks for your prayers.
Wow...sounds like you have quite a regimen going there....I'm glad it's
keeping things from getting worse.
Right now I'm on CCBs, coumadin and lasix. Will add Tracleer. I think
they're gonig to keep me on the ccbs too because I still respond to the
nitric oxide.
Thanks again to all of you for your support and prayers....I'm very thankful
for this group!
Kathleen

Glad to Hear Your News

2008-11-25 17:51:59

Kathleen,
I am thrilled that you are considered "too healthy" to be part of the
test program.
My pressures have stayed the same for two years now. I thank GOD for
that. I am on CCB's, Oxygen 24/7, CPAP, Coumadin, Lasix, Potassium
supplement, Beta blocker, and medicine for Arthritis.
I will be interested in now you do on Tracleer.
My thoughts and prayers are with you.
Simply trusting everyday,
Bonita

PTC Support Group in Minnesota

2008-11-25 09:26:27

Hi Everyone!
I haven't been away from the group for a while, but I am back. It is sooo
hard to keep up with all of the e-mail. I see there are a lot of new people
so I will introduce myself again. I am a 29 year old female from Minnesota.
I was diagnosed with PTC almost two years ago. I went through the regular
routine: About a billion different Doctor's, Diamox, Lasix, Prednisone,
Spinal Taps, Constant eye checks, Lose weight, don't eat too much salt, watch
the vitamin A & No Tetracycline, No Birth Control pills, etc....You all know
the routine. After we ruled out that Diamox was not going to be a possibility
for me, and the spinal taps quit working for more than a few hours, it was
time to do the shunt thing. It's actually the best thing I have done for my
PTC. It has only been 5 months, but what a wonderful headache free 5 months
it has been. I can read again! YAY!!!! I really hated being bald and I am
still having some abdominal pains. My shunt really likes to irritate my
diaphram and liver..OUCH! For the most part I am very happy with the result.
I would like to ask if any of you are from Minnesota. I am going to try to
get a support group going with the help of my Neuro Opthalmologist. I think
the meetings are going to be held at the University of Minnesota. If anyone
would be interested please e-mail me at my personal e-mail address of
jagness@..., if you send it to the onelist group I might not see it. I
hope there are some of you out there in this area! I hope everyone is feeling
well
Your friend
Jennifer
jagness@...

Re: PTC Support Group in Minnesota

2008-11-25 06:00:20

Jennifer, Hi I am from MN where at in MN are you I live in the metro area I
have had PTC for almost 7 years and it has been hell what kind of a shunt
did you put in I have had both the ventricular and a lumbar I have had an
optic nerve fenestration and a large number of spinal taps and a large
number of different meds. who is your neuro optimoligets and what other
doctors do you see I am kind of at a stand still they don't know what to do
to me. great hearing from you. laurie

Re: [PHA_Parents] Beck - Transplant - News

2008-11-24 19:42:11

Glad to hear things are moving forward. Prayers continuing of course.

Blessed be,

JanW

sitaxsentan study

2008-11-24 13:30:11

Hi all,
I just got back from NYC where I was going to enter the sitaxsentan study.
Spent a whole day having all the usual PH tests (exercise tests....bicycle
and walking, ekg, echo, chest xray, PFT) and then a heart cath the next day.
The doctor told me he had good news and some almost good news. He told me
that my pressures had not changed from October and that I could not be in
the study because I was "too healthy". I think I was able to walk too far
on the walking test so I didn't meet the criteria for the test. So....I
won't be in the study. Since I won't be in the study, and the CCB's I'm
taking don't seem to be doing much (although they may be the reason my
pressures haven't gotten worse since October) we are going to try
bosentan(Tracleer). Anyway...thanks for all of your prayers! I appreciate
them muchly!
Kathleen

Re: Beck - Transplant - News

2008-11-24 13:24:41

Pam, I was so glad to see this post!!! Finally something is getting
done!! Are you nervous? Is she? How do you think she'll do for the 6
min test?? Sorry to be nosey! You can ignore! I'm just glad you stood
up for your girl, seems like that's necessary a lot with this
condition!!
Heidi

Re: chat times

2008-11-24 08:45:51

ditto here!
Julie P.

Re: [PHAcommunity] questions

2008-11-23 21:06:19

Jean,
Please do be more proactive, assertive and aggressive. Check out the PHA
web page for a list of PH doctors near you and select another one? Then
insist upon a referral. It is amazing that your cardiac doctor could even
suggest PH since it goes undiagnosed and untreated usually until a PH doctor
is involved. You need a heart cath (we have all had these) and during that
proceedure you need to have nitric oxide introduced to see it it brings down
your arterial pressures. That means all the difference in the world as to
what kind of medication you will need for your therapy! A cardiac doctor is
a heart doctor. A pulmonary or a respiratory doctor are lung doctors. A PH
doctor is one who knows well the inter-relationship between the two,
especially as it relates to the pulmonary artery between them. Do not
settle for anything less. Know which doctor you want to see. Contact
his/her office with your records faxed to them before you see your cardiac
person. Say, "Dr. Jones will accept me as a patient and his office is
awaiting your referral....."
Keep us posted on your progress.
Diana

Beck - Transplant - News

2008-11-23 20:15:36

Hello everyone,
Well, evidently my e-mail to the transplant coordinator yesterday spelling out that Becky spends 2/3's of each day in bed due to extreme fatigue make an impression. She told this to the main surgeon, Dr. R, and he has decided he wants to see her in Dallas as soon as possible. It will be on Friday, March 7 - he wants a 6 minute walk test first, and then for Becky to see him. It sounds like it will all take place in the morning, so we shouldn't have to stay there all day unless they come up with something else they want.
I'll drive up on Thursday afternoon with Becky, stay in a hotel and then go to the hospital the next morning. Since they want us to start at 9:00 a.m. and it takes about 4 hours to get from Houston to Dallas by car, that is about the only way to do it.
Thanks for everyone who has cared. I guess I'll have to get busy now and make a hotel reservation.
Pam (Becky's mom)

Re: [PHAcommunity] Digest Number 397

2008-11-23 17:08:38

Hey Don, Jackie/GA here----How's the Tracleer working for you? Do
you think it helped you with your retreat? I'm still wondering if it is
working for me---there are times that makes me believe that it is working and
others I know it is not working. Do you ever have anxiety attacks? I have
them sometimes that I have to lay down and rest ---my breathing just is so
bad and I feel as if I can't catch my breath.
Sounds like you had a wonderful retreat------take care.
Jackie/GA

Re: ASPARTAME

2008-11-23 05:24:43

This is Beck'ys mum and I have CFS and Fibromyalgia. Somebody emailed
some stuff on the nutrasweet as well and I am wondering whether it worth
both Becky UK and I trying to avoid sweeteners. Over in UK a lot of
stuff is written on food packaging but only the minimum is written.

questions

2008-11-22 23:10:32

I've been reading the various e-mails with much interest. I was diagnosed last
fall with PH--probably primary--no know complicating factors. So far, I've had
two echoes and a chemical stress test, no clogged arteries. But the only
medication I'm taking from cardiology is Altace, which gives me a hacky dry
cough--known side effect. I take a diuretic and another BP medication. I see my
cardiologist again in a week or so. Nothing has been said about a PH specialist
(the closest ones are in Kansas City, at a hospital I refuse to go to). Do I
need to have some questions for either my internist or cardiologist next time I
visit? I see that many of you went on powerful meds within a month of your
diagnosis, and am wondering if I need to be more proactive (or aggressive).

betty-tracleer

2008-11-22 19:56:52

Hi Betty,
I was diagnosed with PPH in Sept. 2000 and was put on Flolan in Oct. 2000.
I was doing well and thank Flolan for saving my life. I am ready though to get
this darn pump off of me. I started Tracleer just 2 days ago. I looked through
all the pro's and con's and see that what you are going through are common side
effects. If you are on Flolan and Tracleer it maybe because your body is ready
to start to come down more off of the Flolan. I know I have had a headache
about an hour after taking my Tracleer pill and it lasts for a few hours and
then just fades. I am sure that these side effects will fade in time as you are
on Tracleer longer. I hope all goes well for you and welcome to our group. We
are all here for you in any way we can be.
My love and prayers,
-Amy from Arizona-

many many things

2008-11-22 15:42:13

Hi everyone,
I get the digest version right now so I get too confused to respond in a
timely manner. Funny I used to be able to think :-) It goes to my office so I
don't always have time to read the downloads here. I just got a chance to read
the last 5. Right now my husband is at home stripping the floor in a room to
put our computer, then we will be able to get online there. I can't wait.
Though why anyone would glue ugly green and black shag carpet to hardwood
floors is beyond me. Once we get it set up I'll switch my mail address to
there.
I saw my optho Monday. Now he is not sure I have PTC. My pressure was 15 or
16 on my only LP and the edema has gone down a little in my left eye, but not
the right. He said that shouldn't happen. I asked him if it isn't PTC what is
it, and he said he had no idea. I had already been on diamox and lasix for
two months before the LP that's probably why the pressure was down. Makes
sense to me. Plus I know my pressure is highest when I am premenstrual. My
blood pressure is always low and so is my temp. (usually 95.6) Maybe 15 or 16
is a high pressure for me.
He also mumbled something about drusen I asked what that meant and did not
realize until later that I didn't get an answer.
HA are only occasional now, though I did have two killers this week. If I
hadn't been a holiday weekend I would have demanded an LP.
My neuro. called me yesterday. He said he was calling to wish me a Happy New
Year and wanted to know how I have been feeling. I told him what the optho
said. He said I do to have PTC. He also said if HAs are that bad again, call
and he will do a LP and of course PMS would raise my pressure. This guy is
wonderful. If any one lives in Grand Rapids, MI area and needs a neuro., call
Gary Miller DO. He also asked me if I would mind picking up some coffee beans
from the roasters in the next block and bringing it in when I have my next
appointment in two weeks. So maybe he did have an ulterior motive. LOL I
forgot to ask him about drusen. Funny I used to be able to remember things.
:-)
Kim
P.S. Some of you know about my granddaughter who was abducted a year and a
half ago. Last week we got another web page up for her. The address is:
www.geocities.com/~helpthekids/shannon.html
This one has more photos and more info than the first one. Also some people
asked about linking their pages to the first one. This one would be the best
one to link to. Just be sure to email chldsrch@... and let them know
where you linked it . Something about building a circle. I didn't understand
that part. There is already a link to her first page there, so be sure to
check out both. There is some different info. each. If you could pass the
sites on to every one you know I would be very grateful. Ask them to pass it
on also. I know she's out there somewhere. I just need more people looking.
You know the saying about God not giving us more than we can handle. I think
that he is beginning to overestimate my strength. I pray 1999 is better.

Emailing: 432849srcmp=card-050302

2008-11-22 08:50:43

Warfarin Therapy May Modify Underlying Pathology of Angina
Focus On... Alzheimer's Disease Anthrax APN Business & Law
Asthma Bipolar Disorder Breast Cancer Depression Erectile Dysfunction Geriatric
Care Hepatitis C IBS InfluenZone Kidney Disease Menopause Multiple Sclerosis
Osteoporosis Ovarian Cancer Pain Management Schizophrenia Secondary Anemia
Serious Mental Ill Sports Medicine UTI-Zone Weight Management =================
Related Topics ================= Disaster & Trauma Dyslipidemia & HIV Health
Diversity Hospice Care Internet Healthcare Medical Privacy
Welcome, D Kim
May 10, 2002
Warfarin Therapy May Modify Underlying Pathology of Angina
NEW YORK (Reuters Health) Apr 30 - Treatment with warfarin appears
to reduce the incidence of angina, according to a report in the April 22nd issue
of the Archives of Internal Medicine. The finding supports the idea that
warfarin modifies "the pathological condition of vessel walls" involved in
coronary heart disease.
"In primary prevention, anticoagulation with warfarin sodium to an
international normalized ratio of 1.5 and 75 mg of aspirin per day each reduced
the incidence of coronary heart disease (CHD)," Dr. Tom W. Meade, of the
University of London, and colleagues note.
To examine the effects of warfarin on the development of angina and
total CHD, the researchers studied 5499 at-risk men between the ages of 45 and
69 years who were enrolled in the Thrombosis Prevention Trial. In a factorial
design, the patients received both warfarin and aspirin, either one or the
other, or placebo.
The incidence of stable angina was reduced by 16% with warfarin
treatment, although this was not significant at p = 0.26, according to the team.
The incidence was increased by 39% (p = 0.05) with aspirin. "The difference
between those taking warfarin alone and aspirin alone is now marginally
significant, with 37% fewer cases among those taking warfarin than taking
aspirin (p = 0.05)," they explain.
Total CHD was reduced by 18% with warfarin (p = 0.01), and by 8%
with aspirin (p = 0.36).
"Further research is needed to confirm or refute our findings,
because they carry potentially important implications for the primary prevention
of CHD with the use of antithrombotic agents," Dr. Meade and colleagues
conclude.
Arch Intern Med 2002;162:881-886.

Re: nutrasweet info

2008-11-21 21:04:44

Wow! This is scarry! I know that my mom had bad memory problems. She always kept
a Certs with nutrasweet in her mouth and drank diet cokes like beer. She quit
and her memory improved greatly.
I got off of diet pepsi when I started taking Diamox. The carbonation tastes
awful to me. Now I'm off of the Diamox, but haven't gotten re-addicted to the
diet pepsi. This is good enough for me to stop.
Thanks for passing on the info pink!
Lara

Re: Yay!

2008-11-21 17:28:37

Julie,
I opted for an LP shunt instead of the invasive ONSF. My doc and I weighed
the pros/cons and decided that the shunt was less risky (no chance of
blindness) and less invasive. Plus the ONSF sometimes seals back up. I know
folks have had problems with the shunts too, but revisions (from what I
understand) are not as big a deal as having the original one put in. And so
far, (knock on wood) I am having good luck with my shunt after the initial
"getting used to it" period.
Everyone must make their own decision, but I hope my input is helpful.
Just curious... why do you really not want a shunt?
Best wishes and good luck!
Lara

Re: Welcome to <a href="/group/ptc-support-group/post?postID=Oy8MhVwm-e9rIfZANlKtXe-9u6CrgDnjGWGrvnMuHncfUnuO3GlGXCZd2tcB8Hjr-eo53DJob3-J3qBHlMj9DKUdeg">ptc-support-group@onelist.com</a>

2008-11-21 08:22:28

How do you get into talk city I am completly computer stupid some times I
can wing it but haven't found the key to this yet help! help! Is there an
email list for the ptc group. Is there anyone that lives in the twin cities
area or can't we say that I don't want to do anything wrong in the group.
well good-bye for now have to go take care of my puppies they want there
supper.thanks for all of your help with everything so far. everyone. laurie

HAPPY NEW YEAR 1999 !!

2008-11-21 06:09:02

Dear Group
Wishing all of you a happy New Year and a year with PTC that is easier to live
with. Hope you all have a chance to have fun and be happy!!
Best wishes and warm regards from South Africa
Janice

Re: [PHA_Parents] Update: Becky and Transplant

2008-11-20 23:24:46

Pam,

I wonder why that is.....it seemed like everything with Noel always had flys in the ointment also...

and everything that could possibly go wrong always did....it was very hard on all of us..

know i am keeping you all in my prayers....celeste

Re: [PHAcommunity] New Member/caretaker

2008-11-20 20:27:30

hi...
another new member.... althou I am only a caretaker of someone with PPH. My
brother who is 45 and has a mild developmental disability was rx last Oct.
His pressure is in the severe level/93. He has been on tracleer for almost 4
months and the echo last week showed no progession (YEAH!) .... and no
improvements. He is very easy going...... happy..... and a very "real"
person. I feel very blessed to have him as a brother.
He currently lives independantly with 5 hrs. of supervision from an agency.
I' do all the doctor appts., phone calls, research etc. He wants nothing to
do with a "group home'" type of living situation.
I have 2 questions/ support I need .....
has anyone with pressures above 90 on tracleer seen any improvments on their
echos?
any words of "magic" I can give my brother... or i can have him come hear and
read some of your great supportive emails himself..... about adjusting to
live on oxygen??
He HATES it....he calls it obnoxious!! I've talked to him about how
"mantras" sometimes help us accept things --- so we came up with... O2 is my
friend --- he changed it to... it's my obnoxious friend!!
anywya....sometimes i go to see him and he doesn't have it on. (he doesn't
understand time, so telling him he can take it off for 5 mins., can lead to
hours!) I've explained that oxygen is helping his heart work easier... and
will help him live longer. I think it goes in and out of accepting and
understanding this.... ( a very normal process I'm sure!)
so... any words of wisdom??

Re: [PHAcommunity] Jenny

2008-11-20 08:18:00

They sound lovely. I am hoping for a grand daughter one day - meanwhile
I have a grandson who is my delight. Glad you are through your busy
year and all has gone well - I expect your son is also growing and
changing in remarkable ways. Take care Much love Jenny
Sarah Elizabeth is growing ! She is so pretty. I have another niece that
was born on March 2. Her name is Keanua.
She is beautiful
SallyMinGA
To unsubscribe from this group, send an email to:

Re: [PHA_Parents] to JanW

2008-11-20 08:16:08

dear Jan,

Thanks for sharing the stories on how the boys are doing....I think of you all daily and wonder how you are getting on. It must be terribly hard to loose a spouse. I know it was a bitch to loose my daughter...but I think it would be terribly hard for me if I lost ron also.

Thanks for sharing Josiah's story....it was interesting to hear how he relates to the world. It made me smile but I didn't think it was funny in any way. Just the kindness I felt towards him with the fixation problem.

I am sorry Felix is stuck in anger.....I was stuck there for a long time myself ..typical boy though and the swords...

know that I am sending you healing hugs and wishes and keeping you all in my prayers.....celeste

Jenny

2008-11-20 02:41:36

Sarah Elizabeth is growing ! She is so pretty. I have another niece that was
born on March 2. Her name is Keanua.
She is beautiful
SallyMinGA

Update: Becky and Transplant

2008-11-19 17:11:27

Hello everyone,

Just as an update, I haven't gotten any definitive word. I e-mailed the transplant coordinator early this morning. She said Dr. Ring was looking at the CDs of Becky's tests done at Stanford on Friday and again today, and she hadn't heard anything from him. She said she would check with him in the morning (tomorrow) and see if she could get an answer and call me. She did mention that Dr. Ring had said that he might want to see Becky in their clinic in Dallas. She never actually saw him the other time when Becky and my husband were in Dallas because Dr. Ring was out of town at the time.

At this point, I am worn out with this whole thing. All we are talking about here is whether they will list her now or later - they have already agreed several weeks ago that they will accept her as a candidate. Since everyone knows it takes time to get organs, I think there is too much agonizing going on here over something no one can predict very well - when a PH patient needs to be on a transplant list. How Stanford can look at the same tests and decide to list here right away, and yet Dallas seems to be having such a hard time deciding, I can 't figure. I am just afraid they will wait too long.

If he wants us to go see him, we will. It just seems to me like nothing is ever easy for us with this transplant stuff. Just once, it would be nice for something to go easily. And yes, I know, my attitude stinks, but right now this is the best I can do.

Thanks for caring.

Pam

Re: [PHA_Parents] Amy gets her heart and double lung transplant

2008-11-19 08:57:13

Barbara,

Congratulations to you and Amy! I hope things continue to go well.

Pam
Barbara Melius <bmelius416@...

Hi Pam,

Of course we continue to pray for Becky. I wanted to let you know breifly that yesterday 2/14/08 we got the call from Lucille Packard. Amy had her heart and double lung transplant starting at midnight. Amy's transplant went well and continues to do well by the hour. I still am in shock over the whole thing, but have not regreted this decision yet. I actually wanted to say no to the whole thing when I got the call, but the doctor went over why Amy needs to have this transplant. Surgeons said the the organs were a perfect match. Only time will tell.

I wish you and Becky all the best and continue our prayers for you both.

barbara

[PHA_Parents] Becky - Transplant Update and Need for Prayer

2008-11-19 02:30:51

Hi Pam

Sending prayers your way for Becky and future transplant. Also for your whole family wellbeing during the stressfull lead up.

best wishes

chris

nutrasweet info

2008-11-19 02:21:10

pink wrote:
I think this is worth passing on.
WORLD ENVIRONMENTAL CONFERENCE and the MULTIPLE
SCLEROSIS
FOUNDATION F.D.A.
ISSUING FOR COLLUSION WITH MONSANTO
Article written by Nancy Markle (1120197)
I have spent several days lecturing at the WORLD ENVIRONMENTAL
CONFERENCE on
"ASPARTAME marketed as 'NutraSweet', 'Equal', and 'Spoonful"'.
In the keynote
address by the EPA, they announced that there was an epidemic
of multiple
sclerosis and systemic lupus, and they did not
understand what toxin was causing this to be rampant across
the United States.
I explained that I was there to lecture on exactly that
subject.
When the temperature of Aspartame exceeds 86 degrees F, the
wood alcohol in
ASPARTAME coverts to formaldehyde and then to formic acid,
which in turn
causes
metabolic acidosis. (Formic acid is the poison found in the
sting of fire
ants). The methanol toxicity mimics multiple sclerosis; thus
people were being
diagnosed with having multiple sclerosis in error. The
multiple sclerosis is
not a death sentence, where methanol toxicity is.
In the case of systemic lupus, we are finding it has become
almost as rampant
as multiple sclerosis, especially Diet Coke and Diet Pepsi
drinkers. Also,
with methanol toxicity, the victims usually drink three to
four 12 oz. Cans of
them per day, some even more. In the cases of systemic lupus,
which is
triggered by ASPARTAME, the victim usually does not know that
the aspartame is
the culprit The victim continues its use aggravating the lupus
to such a
degree, that sometimes it becomes life threatening.
When we get people off the aspartame, those with systemic
lupus usually become
asymptomatic. Unfortunately, we can not reverse this disease.
On the other
hand, in the case of those diagnosed with Multiple Sclerosis,
(when in
reality, the disease is methanol toxicity), most of the
symptoms disappear. We
have seen cases where their vision has returned and even their
hearing has
returned. This also applies to cases of tinnitus. During a
lecture I said "If
you are using ASPARTAME (NutraSweet, Equal, Spoonful, etc.)
and you suffer
from fibromyalgia symptoms, spasms, shooting pains, numbness
in your legs, cramps, vertigo, dizziness, headaches, tinnitus,
joint pain,
depression, anxiety attacks, slurred speech, blurred vision,
or memory loss --
you probably have ASPARTAME DISEASE!"
People were jumping up during the lecture saying, "I've got
this, is it
reversible?" It is rampant. Some of the speakers at my lecture
even were
suffering from these symptoms. In one lecture attended by the
Ambassador of
Uganda, he told us that their sugar industry is adding
aspartame! He continued
by saying that one of the industry leader's son could no
longer walk - due in
part by product usage!
We have a very serious problem. Even a stranger came up to Dr.
Espisto (one of
my speakers) and myself and said, '1Could you tell me why so
many people seem
to be coming down with MS? 11 During a visit to a hospice, a
nurse said that
six of her friends, who were heavy Diet Coke addicts, had all
been diagnosed
with MS. This is beyond coincidence.
Here is the problem. There were Congressional Hearings when
aspartame was
included in 100 different products. Since this initial
hearing, there have
been two subsequent hearings, but to no avail. Nothing as been
done. The drug
and chemical lobbies have very deep pockets. Now there are
over 5,000 products
containing this chemical, and the PATENT HAS EXPIRED!!!!!
At the time of this first hearing, people were going blind.
The methanol in
the aspartame converts to formaldehyde in the retina of the
eye. Formaldehyde
is grouped in the same class of drugs as cyanide and arsenic--
DEADLY
POISONS!!! Unfortunately, it just takes longer to quietly
kill, but it is
killing people and causing all kinds of neurological problems.
Aspartame changes the brain's chemistry. It is the reason for
severe seizures.
This drug changes the dopamine level in the brain. Imagine
what this drug does
to patients suffering from Parkinson's Disease. This drug also
causes Birth
Defects.
There is absolutely no reason to take this product. It is NOT
A DIET
PRODUCT!!! The Congressional record said, "It makes you crave
carbohydrates
and will make you FAT". Dr. Roberts stated that when he got
patients off
aspartame, their average weight loss was 19 pounds per person.
The
formaldehyde stores in the fat cells, particularly in the hips
and thighs.
Aspartame is especially deadly for diabetics. All physicians
know what wood
alcohol will do to a diabetic. We find that physicians believe
that they have
patients with retinopathy, when in fact, it is caused by the
aspartame. The
aspartame keeps the blood sugar level out of control, causing
many patients to
go into a coma. Unfortunately, many have died.
People were telling us at the Conference of the American
College of
Physicians, that they had relatives that switched from
saccharin to an
aspartame product and how that relative had eventually gone
into a coma. Their
physicians could not get the blood sugar levels under control.
Thus, the
patients suffered acute memory loss and eventually coma and
death.
Memory loss is due to the fact that aspartic acid and
phenylalanine are
neurotoxic without the other amino acids found in protein.
Thus it goes past
the blood brain barrier and deteriorates the neurons of the
brain. Dr. Russell
Blaylock, neurosurgeon, said, "The ingredients stimulates the
neurons of the
brain to death, causing brain damage of varying degrees. Dr.
Blaylock has
written a book entitled EXCITOTOXINS: THE TASTE THAT KILLS"
(Health Press
1-800-643-2665). Dr. H.J. Roberts, diabetic specialist and
world expert on
aspartame poisoning, has also written a book entitled DEFENSE
AGAINST
ALZHEIMER'S DISEASE" (1-800-814-9800). Dr. Roberts tells how
aspartame
poisoning is escalating Alzheimer's Disease, and indeed it is.
As the hospice
nurse told me, women are being admitted at 30 years of age
with Alzheimer's
Disease. Dr. Blaylock and Dr. Roberts will be writing a
position paper with
some case histories and will post it on the Internet.
According to the Conference of the American College of
Physicians, 'We are
talking about a plague of neurological diseases caused by this
deadly poison".
Dr. Roberts realized what was happening when aspartame was
first marketed. He
said "his diabetic patients presented memory loss, confusion,
and severe
vision loss". At the Conference of the American College of
Physicians, doctors
admitted that they did not know. They had wondered why
seizures
were rampant (the phenylalanine in aspartame breaks down the
seizure threshold
and depletes serotonin, which causes manic depression, panic
attacks, rage and
violence).
Just before the Conference, I received a FAX from Norway,
asking for a
possible antidote for this poison because they are
experiencing so many
problems in their country. This poison is now available in 90
PLUS countries
worldwide. Fortunately, we had speakers and ambassadors at the
Conference from
different nations who have pledged their help. We ask that you
help too. Print
this article out and warn everyone you know. Take anything
that contains
aspartame back to the store. Take the "NO ASPARTAME TEST" and
send us your
case history.
I assure you that MONSANTO, the creator of aspartame, knows
how deadly it is.
They fund the American Diabetes Association, American Dietetic
Association,
Congress, and the Conference of the American College of
Physicians. The New
York Times, on November 15, 1996, ran an article on how the
American Dietetic
Association takes money from the food industry to endorse
their products.
Therefore, they can not criticize any additives or tell about
their link to
MONSANTO. How bad is this? We told a mother who had a child on
NutraSweet to
get off the product. The child was having grand mal seizures
every day. The
mother called her physician, who called the ADA, who told the
doctor not to
take the child off the NutraSweet.
We are still trying to convince the mother that the aspartame
is causing the
seizures. Every time we get someone off of aspartame, the
seizures stop. If
the baby dies, you know whose fault it is, and what we are up
against. There
are 92 documented symptoms of aspartame, from coma to death.
The majority of
them are all neurological, because the aspartame destroys the
nervous system.
Aspartame Disease is partially the cause to what is behind
some of the mystery
of the Dessert Storm health problems. The burning tongue and
other problems
discussed in over 60 cases can be directly related to the
consumption of an
aspartame product. Several thousand pallets of diet drinks
were shipped to the
Dessert Storm troops. (Remember heat can liberate the methanol
from the
aspartame at 86 degrees F). Diet drinks sat in the 120 degree
F. Arabian sun
for weeks at a time on pallets. The service men and women
drank them all day
long.
All of their symptoms are identical to aspartame poisoning.
Dr. Roberts says
"consuming aspartame at the time of conception can cause birth
defects". The
phenylalanine concentrates in the placenta, causing mental
retardation,
according to Dr. Louis Elsas, Pediatrician Professor -
Genetics, at Emory
University in his testimony before Congress.
In the original lab tests, animals developed brain tumors
(phenylalanine
breaks down into DXP, a brain tumor agent). When Dr. Espisto
was lecturing on
aspartame me, one physician in the audience, a neurosurgeon,
said, "when they
remove brain tumors, they have found high levels of aspartame
in them".
Stevia, a sweet food, NOT AN ADDITIVE, which helps in the
metabolism of sugar,
which would be ideal for diabetics, has now been approved as a
dietary
supplement by the F.D.A. For years, the F.D.A. has outlawed
this sweet food
because of their loyalty to MONSANTO.
If it says "SUGAR FREE" on the label-- DO NOT EVEN THINK ABOUT
IT!!!!!l!
Senator Howard Hetzenbaum wrote a bill that would have warned
all infants,
pregnant mothers and children of the dangers of aspartame. The
bill would have
also instituted independent studies on the problems existing
in the population
(seizures, changes in brain chemistry, changes in neurological
and behavioral
symptoms). It was killed by the powerful drug and chemical
lobbies, letting
loose the hounds of disease and death on an unsuspecting
public. Since the
Conference of the American College of Physicians, we hope to
have the help of
some world leaders. Again, please help us too.
There are a lot of people out there who must be warned, please
let them know
this information. This could be considered life saving
information for some of
you and your friends and relatives. I've forwarded it to
everyone I can
contact. If you know people who drink diet sodas on a regular
basis, get this
message to them!!! Make sure and lay off the Diet Soda and
other stuff with
Nutra-Sweet.
People's lives are at stake! What you now know can make an
important
difference.

New web site

2008-11-18 21:48:32

Hi everybody. I just wanted to let you know that I have a new web site. It is
at http://www.geocities.com/Wellesley/Gazebo/5443/. I would like to add more
on PTC, but I haven't had a lot of time, and I am having trouble with what
exactly to say about it other than it is a miserable, sucky way to live. Any
ideas?
Freedom

Re: [SPAM] [PHA_Parents] Amy gets her heart and double lung transplant

2008-11-18 12:46:56

Hi Barbara

sending prayers to Amy for miracle healing and love and support for you all.

best wishes

chris

mum to tara

Amy gets her heart and double lung transplant

2008-11-18 08:30:38

Hi Pam,

Of course we continue to pray for Becky. I wanted to let you know breifly that yesterday 2/14/08 we got the call from Lucille Packard. Amy had her heart and double lung transplant starting at midnight. Amy's transplant went well and continues to do well by the hour. I still am in shock over the whole thing, but have not regreted this decision yet. I actually wanted to say no to the whole thing when I got the call, but the doctor went over why Amy needs to have this transplant. Surgeons said the the organs were a perfect match. Only time will tell.

I wish you and Becky all the best and continue our prayers for you both.

barbara
Pam Adams <pcadams_2000@...

Hi Jan,

Thanks for the prayers. I don't really know the average waiting time. I do know their website refers to it in terms of months, rather than years, so I think that is encouraging. Also, I know they only had one person for heart and lung on their list at the time Becky was seen there, meaning if listed soon, she might be second in line because Dallas lists people who need heart and lung at the top of the list, as opposed to how some other centers do it.

How are you doing? I think of you often, but haven't been very good about letting you know.

Pam
jan windz <jwindz@dishmail.net

Pam,
Lots of prayers coming your way. What is the "average" waiting time at Dallas? Please keep us posted.
Blessings,
JanW

Re: [PHAcommunity] Ernesto

2008-11-17 19:21:47

Hi Ernesto,
This is Don. I too have read Louise Hay and I believe a great many of her
concepts have some value. One thing is for sure. It can't hurt to try and
think positive thoughts and all that stuff.
Peace, Love, Hope,
Don Newman

Re: [PHAcommunity] In Denny's Memory

2008-11-17 18:22:51

Bonita, Your tribute to Denny was wonderful. I thank you for sharing it with
all of us.
We do have broken hearts over the loss of our Angel Denny. I will miss Lynn's
stories of this precious child but she is at peace and ready to greet each of
us when we must go.
With Joy & Butterfkies
Robbin

Re: [PHAcommunity] Anna

2008-11-17 11:37:42

Anna,
We were somewhere in your vicinity. I remember seeing signs or something about
Monteagle. We were near a place called Nunnelly, which is near Centerville. It
is called The Ranch, because the owner is one of the biggest cattle ranchers in
Tennessee. (I forget how many head of cattle he has, but I remember that he has
over 50 horses.) The place is on the Piney River. It is so beautiful up there.
We are jealous. There were hardly any mosquitoes compared to here. And
everything was so green. It rained the first night we were there (Friday) and
even that was enjoyable, since it has only rained down here in Savannah twice
since the beginning of April. (I know how Bob feels about not getting any rain.)
We plan on going back maybe next year. Maybe we can stop and say hi on our way
through.
Hope you and Sierra are doing OK.
Peace, Love, Hope,
Don Newman

Re: say hi

2008-11-17 04:22:06

welcome to the group brenda.........sorry you needed us.............i know, we
all thought we were all alone till we found this group.........pretty awesome
huh?
take care and happy new year,
Marie
Portland Oregon

Re: [PHA_Parents] Becky - Transplant Update and Need for Prayer

2008-11-16 19:23:09

I have periodically watched you go through pains regarding Becky's condition, my son's case is not as complex, but nonetheless, we need less complex, and when given

more than we can handle, give it to your higher power, and give Becky back to who gave her to you. Children are a gift from God. We are angels chosen to care for them, because they chose us as parents long before they are formed. love and light to you and Becky

From: Pam Adams
Sent: Thursday, February 14, 2008 12:25 PM

say hi

2008-11-16 17:49:14

Hello, My name is Brenda J and I am new to the group. I have had ptc for
5 years now. I am a homemaker,married 10years and have one son 9 years
old. Untill now I thought I was the only person around with this and it
was so nice to find a group of people that will understand what I am
talking about.My friends and family really have a hard time because I
look so normal but,if they could only feel one day what I feel. I take
diamox 1times a day and so far it seems to be keeping me stable as five
years ago I was almost blind. I work hard to keep the weight down but, I
need to lose 20lbs and I hear it at every doctor appt. life is never
boreing with ptc is it but,humor can keep you going thru almost
everything and thank God I do not have to work I do not think I could do
it. But, I try to keep busy with my son and outside things. that is all
I can think of. I tried to get into talkcity but,am having a lot of
trouble either I get acess denied or will not give me any room at all or
will not send my message I hope I get in one day so, I can meet all of
you bye
Brenda

Re: Welcome to <a href="/group/ptc-support-group/post?postID=Bco0CDp_IVRLPpgsbU_WNGkF69gSoJik519Jf2SgNASySEq9fQvo7e1Lj0_lE-I1V-oDlnLgg3VyZ7-dL6lny6eOkptb">ptc-support-group@onelist.com</a>

2008-11-16 09:19:09

Kathy & Laura - AMEN!
Julie from OZ.

Re: [PHAcommunity] Retreat

2008-11-16 04:09:16

Hello All,
Just wanted to say hi. As some of you may know, I went to a retreat in the
Tennessee mountains this past weekend. I did equine therapy, sat in on some
fireside chats, and tremendously enjoyed the natural setting. This was my first
time in the mountains with PH, and yes, I could tell the difference. I live at
sea-level and those mountains were fairly high up there. Of course, we were WSW
of Nashville so they were not the biggest mountains in TN. But the air was
somewhat thinner. I was OK until it came time for the sweat lodge. It was not a
12 or 24 hour process like I had thought it would be, rather it was only about 2
hours. Also, I think that sweatlodge practitioners sometimes use peyote, but
they did not do it at this one, thank God. If they would have I would have had
to pass for sure !!
Since I was feeling pretty good, even in the thin mountain air (which must have
affected my judgement !! ), I decided I could handle a couple of hours in a
sweatlodge in exchange for the emotional and spiritual benefits which it
offered. After all, this was not just any old sweatlodge. This one was being run
by Kenny Littlebrave, a true Native American and traditionalist who learned from
his father and grandfather the old ways of doing things.
So I went through the process. It was a great relief to get out of that
sweatlodge when the time came, let me tell you. While I did gain a great deal of
emotional and spiritual uplifting, I also gained a great deal of physical
exhaustion. The sweatlodge was held on Sunday morning and though I was able to
work for a few hours today, I am still wiped out. I don't think I will be doing
that again any time soon !! Otherwise, I enjoyed the chance to get away and
all-in-all it was a great weekend.
Anyway, hope all is as well as can be for each and every one of you.
Peace, Love, Hope,
Don Newman

Becky - Transplant Update and Need for Prayer

2008-11-16 01:07:33

Hello everyone,

I got an e-mail from Marcie, the transplant coordinator in Dallas yesterday stating that they had finally received the 2 CDs of tests they were waiting on from Stanford. She stated she was taking them to Dr. Ring, the main surgeon and that she would talk to me either Thursday or Friday of this week regarding his decision as to when to list Becky - whether to list her now or to wait awhile.

As you might imagine, I am on pins and needles because I desperately feel that she needs to listed now, especially given that there will be a wait for organs anyway.

Stanford's decision was to list her right away if we had gone there. I am hoping Dr. Ring will look at the same test results and coming to the same conclusion, but I am scared - what if he doesn't? Any prayers would be appreciated. Since I have been working on this transplant junk since June of 2007, I am about ready to throw in the towel if I get another setback now.

Thanks.

Pam (Becky's mom)

Re: [PHAcommunity] Amy's news

2008-11-15 17:17:37

Hi Amy,
Just want to support you as you start the Tracleer. I have been taking it now
for over 3 months. I am feeling OK. I have not had any side-effects since the
first day's headache. Some days I feel really good, some days I feel tired. A
lot depends on how much I do and how much rest I get. Seems to me that "normal"
people could say these same things...
I am working a full-time caseload on my job, but fortunately I am on a schedule
of my own making. Have had this full-time load for over six weeks now, so that
means I've been working for half of the 3 months I've been on the Tracleer. I
feel very fortunate that I am able to do this, but to be honest, today I feel
tuckered out and I don't know how long I will be able to keep it up. My biggest
challenge these days is not over doing it. And last weekend, at the retreat I
went on, I overdid it, BIGTIME.
Hopefully, I will soon get my CPAP machine. Dr. Book and Dr. Lawrence (at Emory)
feel like it will make a difference, as I have PH associated sleep apnea. I
spent Monday night at Emory in the pulmonary sleep lab so they could get the
readings they needed to write the orders for the machine.
Anyways, good luck to you. Just remember to take care of yourself no matter
which meds you take. It is so easy to get feeling better and then do too much,
as I am even more aware today. Write me if you need anything.
Peace, Love, Hope,
Don Newman

Yay!

2008-11-15 08:46:25

Well all,
I went to the opthamologist today, and after checking my visual fields
(I hate that test), and looking at my optic nerves, he said that the
swelling is down from the spring. Yay!
I have been on Diamox Sequels (1000mg/day) for about 9 months now, and
my symptoms seem to be maintaining at a good, acceptable level. I have
headaches only when I don't take my Diamox regularly.
I came clean with the doc that I only take it when I feel my pressure
building up, and although he wasn't happy, we did compromise. I can cut
my dose down to one per day (500mg) as long as I agree to take it EVERY
day!
He gave me the usual schpeel about lose weight or else...which I handed
right back to him ("do you think I WANT to look this way, and that I
just haven't tried anything?!). He said that if in all honesty, I've
tried everything, and I'm just plain NOT going to be able to lose any
weight, that he'd probably schedule me for a lateral optic nerve
fenestration, as opposed to the nasal procedure I had performed on both
eyes 4 years ago. I can't remember if those were the right words, but
basically, I had the ONSF from the inside corners of my eyes last time,
and this time if my symptoms don't disappear in 6-9 months, he wants to
have it done from the outside corners as well.
Has anyone else ever been given this option? I refuse to have a shunt
put in unless I'm in dire straights, so I haven't left much alternative,
but I'm wondering if it would do much good.
Julie P.

Re: [PHAcommunity] Sally School

2008-11-15 06:35:20

Sally,
Sounds like you have been busy. Glad to here from you; also, congrats on your
good grades. I know how challenging school gets when you have all the other
things of life to juggle along with it. Enjoy your upcoming break.
Peace, Love, Hope,
Don Newman

Lynn and Lisa

2008-11-14 18:01:03

Sorry I left so quickly without saying good bye....I was kicked off and
couldn't get back in there..Looking forward to chatting again.
Laura

In Denny's Memory

2008-11-14 15:13:27

Lynn,
My heart has been broken when I read about Denny's passing. Yes, I know
that she is at rest and does not have to struggle to breath now; but it
hurts so much at this time. My love and prayers are with you and your
precious family.
I came back from vacation the first week of May and saw your first
postings around the week of April 18th. I read with concern how Denny
was growing weaker.
I had over 387 messages on this site. AND each message from you---I
opened with apprehension---
THEN---- I got to the note from the hospital---- the one I was
dreading----the death message, and later,----- your second guessing
yourself and the Doctors, which is what most people do after this kind
of tragedy.
I worked with many caretakers and all of them experience the "What ifs?"
Medicine is not an exact science. It is always trial and error.
I cannot communicate with my 25 year old daughter, Kim about my illness.
BUT, she has followed Denny's triumphs, challenges, and now her parting
with love. She cried with me when we read the beautiful tribute to Denny
that you wrote.
Kim confided in me that she read my medical file when I was away on
vacation she shed tears when she told me this secret--- BUT, -she still
can't discuss PH with me.
"Denny"
Denny was like a breath of Spring,
Her life was full of deep meaning.
She desired to continue in school,
And followed daily GOD's Golden Rule.
Encouraged many with her attitude,
Accepted each new day with gratitude,
Her Spirit did not know defeat,
Each new challenge she would meet.
Denny, so young, was filled with love,
She knew divine guidance from above.
Though her strength was failing fast,
She received courage that would last.
Her loving memory will go on,
We will see her that Great Dawn,
When like Denny we will rest,
In the Land of all the Blest!
(by Bonita Kilgore)
Continue to share with us your beautiful stories of your family. They
are very uplifting.
My thoughts and prayers are with each of you daily.
Simply trusting everyday,
Bonita

Re: [SPAM] [PHA_Parents] some links to articles in the Vanderbilt reporter

2008-11-14 14:48:38

Hi Jennifer, celeste and all

it's been quiet lately, then again been having computer trouble...currently on hubby's laptop and not quite accostomed to it yet...

Jen i'm glad you and bill didn't have trouble from the hurricane and glad that you could have humour in a stressfull situation. Celeste good to hear from you and love your dogs name.

The watermelon article reminded me of shortly after tara's ph diagnosis. and commencing warfarin. she loved watermelon and ate so much one day that her poop was reddy-pink colour. i kind of panicked and thought it was a sign of blood and took her to emergency, only to later realise it was from the watermelon...lol

we have been having monsoon rainfall here, worst since 1974 floods, and now most of australia is no longer in drought. we don't usually have so much summer rain.

Tara is off to hospital monday 18 feb for her two weeks of treatment, physio etc. She is actually looking forward to it...can you believe that. Just as long as they don't spring anything on her that requires a GA. She is absolutely terrified of being put to sleep. It won't surprise me if they decide to do a bronchcoscopy as i know it was mentioned not long ago. Hopefully everything will go smooth and no nasty surprises. Especially as i have gone off my antidepressants and may not cope with anything unexpected. She will also have her cardiology and echo review. Probably won't get online much over the next couple of weeks, so take care and best wishes.

chris

mum to Tara

Re: [PHA_Parents] some links to articles in the Vanderbilt reporter

2008-11-14 00:18:12

I think of you often and fondly also...as well as the others on this list who I all consider friends....

thank you for sharing the articles although You know i won't read them....i try to avoid the painful stuff anymore.

I was glad to hear that you and bill survived this last round of storms..how frightening....

I hope Patrice is okay i have been watching to see if either of you would post.

Jan you and yours are in my prayers....

it is always good to hear from you Jennifer..

I am still doing my rescue thing and totally enjoying second life....I have built a couch with a rug and a stool and a candle with rotating stars going around it on a silver plate with rocks on it..and it even has a flame although that part was the devil for me..haha...who would ever think i could learn something like this so different and so new ????

hope all is well...loved hearing from you..

and my little saviour was named officially today...

SHESA TAIL WAGIN RIVER O BLISS

just thought someone would like to know..

it is a big nutty but i call her waggy tail and to me she is a river of bliss...celeste

Re: Social club line, and chat times

2008-11-13 19:50:34

Bettianne,
I am working on the E-Mail list. I also enjoy the jokes and stories, I miss
all of the ones from Shelia. I do not know how to set up another room for
this but I can find out. As far as your idea on a scheduled chat time, for
those who can and have the freedom to do so, I think it is great! I live such
a crazy life that I never know when I get the chance to get on here. But, I
know there are many who could meet at certain times. If you'll look at when
my posts usually are it is around 1:00-2:00 am and know one is ever in there
at that time....I'm always disappointed when I get in there and no one is
there. I will keep in touch and let you know from my end what I come up with.
Also, I have never said this to you, but for some reason you are one of the
ones always on my mind. I respect your perseverance to accomplish so many
things under the conditions you have had to deal with. I have the constant
daily H/A's and migraines but have not lost any sight. You are a role model to
many!
Laura

some links to articles in the Vanderbilt reporter

2008-11-13 18:17:00

Hello everyone,
I have been off line for awhile due to a computer failure. I have a
new computer now and I am trying to learn how to use it. Hope everyone
is okay.
We have had some crazy weather and tornados in Tennessee. Bill and I
were at the Nashville Predators game when a tornado warning was
called. Fortunately, there was enough time to finish the game (and the
Preds won) before they evacuated all 13,000 of us into some service
tunnels under the arena. But the tornado did not touch down in
Nashville. However, there was one that touched down not too far from
my home. But everything is oaky here. Patrice, I hope you fared well.
Ironically, the NHL team we had just beaten when we were evacuated was
the Carolina Hurricanes, whose symbol is a swirling storm. Bill was
still in his hockey mode with his hockey manners when they announced
that we should all proceed calmly to the west side of the building
where we would be evacuated to a tunnel.
"Heck, we are hockey fans," Bill yelled back at the announcer. "Why
would we panic? Rotational storms don't scare us none!" This got a
laugh from everyone who heard it, including me. Nobody panicked and
nobody got crushed but I hope I do not have to spend the aftermath of
any more hockey games in a zamboni tunnel.
I thought you guys might in interested in some articles from the
Vanderbilt Reporter. One is about a new drug they are researching to
prevent pulmonary hypertension from developing in kids that undergo
heart surgery that is derived from watermelons. There is not any
indication that this would help kids that already have pulmonary
hypertension, but I found it interesting.
Here is the link:
http://www.mc.vanderbilt.edu/reporter/index.html?ID=6109&keywords=pulmonary+hype\
rtension&start=1&end=10
The second is not PH related, but does have a little story about a
child who was on our unit, a little Iraqi girl with a heart defect
that some good people brought to the U.S. for surgery. The article has
a picture of Joey's cardiologist, Tom Doyle, as well as a picture of
the child.
http://www.mc.vanderbilt.edu/reporter/index.html?ID=6123&keywords=thomas+doyle&s\
tart=1&end=10
Hope everyone is doing well. Jan, I think of you and pray for you
often. Please let me know if there is anything that I can do for you,
and feel free to write me off list if you need to.
Jennifer

Re: Welcome to <a href="/group/ptc-support-group/post?postID=s-pWz6YdJO0hVUAAZ4Ii-Ci7d-UqoOs1KbXowaRfs6eas24mimvxK1PKDXgxfAbkVyMsMhBsImnUJMhFf7U4NwfI7Q">ptc-support-group@onelist.com</a>

2008-11-13 13:24:47

Kathy, I completely agree! I know PTC doesn't seem like a blessing but I
think for some reason or another, God has a plan....He always does!!
(counting my blessing, one by one) Laura

to Patrice....

2008-11-13 02:17:47

Celeste,

We are doing ok. I have been working as close to full time hours as I can. John just recently lost his job so he is trying to look, but jobs are very hard to find this time of year. The kids are doing great in school and getting along well at home. Things have gotten better since John and I have started marriage counseling. I have found out some very hurtful things, but we have agreed to keep working on it and keeping our marriage. Melanie is doing great! She weighed in at 9 lbs 9 oz this morning. I also saw the doc myself and have found out that I found out my blood pressure is high, for me anyway. It was 140/90, it is usually 115/50 or somewhere around there. I am now on a diuretic. I hope this helps my blurred vision that occurs on occasion. I will let you go and please know tha ti Think often of you too. I send lots of love and prayers your way. Take care and God Bless.

Patrice
poofect <poofect@...

Hi Patrice,
I think of you always and keep you and your family in my prayers.
I have often wondered how you were getting along.....and how the children are and everything else....
when you have a moment...please let us know...much love, celeste

[INLINE] In Loving Memory of Corrina Isabella Lozoya [INLINE]

She fought a hard and courageous fight.

Re: Welcome to <a href="/group/ptc-support-group/post?postID=oVFDJj0R_n63hIFEbglj7wT8kiYgZRxv5lxqLd6AX20F5Tgl52fGWfn_a6Vy34FMznpT1BOik3R2JN75KdTn7o8vDQ">ptc-support-group@onelist.com</a>

2008-11-12 18:48:44

Laurie and Michael, I hope you will find comfort and info in this group. Good
luck to you...
Wishing you well,
Stacy

pain control

2008-11-12 17:52:49

Marie, I'll keep you and all in my prayers! Hope everyone is feeling well
between holidays and I look forward to chatting in the chat room with you!
Stacy

Re: good news

2008-11-12 09:42:03

Amy,
Glad to hear your good news. You are really lucky to be able to go
where your husband will be. That should be a nice change for you.
I'll guess the humidity is much higher there than in Arizona.
Personally, I have trouble breathing in high humidity, but you may do
well there in Hawaii. Wish you success and ease in transfering over
to Tracleer. You are in my prayers.
May the Lord Bless,
Betsy

Re: [PHAcommunity] good news

2008-11-12 01:26:37

Amy,
Good morning! What a red letter day for you. Will be praying that your
transition from Flolan to Traclear is a smooth one. Am sure that you can
cope with the changes as they come.
What good news about Hawaii. Cool. I know that you will enjoy it.
Am just myself, beginning to see what a difference treatment makes in helping
with the PH. After several adjustments of my CCBs I am having a few good
days in a row. Can now do more which sure helps the morale.
God Bless, Deborah

re: to Patrice....

2008-11-11 18:15:46

Hi Patrice,

I think of you always and keep you and your family in my prayers.

I have often wondered how you were getting along.....and how the children are and everything else....

when you have a moment...please let us know...much love, celeste

good news

2008-11-11 17:07:05

Hello every one,
I just wanted to share some good news that is happening.
but first....
I would like to say congratulations to Sally for your accomplishments in
school!!!
Kathleen...I am happy that you are putting yourself out there to try a
medication and have those unknowns but the courage to go for it. I hope it all
works out for you.
Deborah...I am happy just to know you...just wanted to tell you I love you.
Lynn...I am still praying heavy for you and your family in these times. I will
always hold you and your kids close to my heart. I hope that you will find a
proper medication for Jacey and that she will be there in your life and ours for
a long long time.
Now for my news...
I am starting Tracleer in the morning!!! I have done my liver tests and my
liver is in great condition. I also found out that my hubby, who is in the
Navy, is going to Hawaii this July and my son and I should be able to go to!!!
I too was concerned about going to Tracleer. I am grateful that my doctor only
suggested it to me instead of pressuring me. I was given time to read and talk
to many of you and others. I even talked to another doctor about his patients
that are making the change over.
I am doing well on Flolan and I am grateful for it. It saved my life in Oct.
2000. But I am a patient that is in the gray area of health....meaning that I
am doing well enough not to need a transplant in a hurry but I am not well
enough to walk around much and still have allot of bad days. I complained to my
doctor that I wanted to try to feel as "normal" as possible. I am tired of
carrying this black bag with me that I always seem to get the cord caught on
something. I am tired of having to take Imodium AD just so I can go to bed and
not have 'That' problem. I am tired of mixing and the all the medical waste
that is involved with Flolan.
I am thankful of Flolan but if I can take something that will improve my quality
of life so I can finally play with my son will be great!!!
I have read some of your concerns about the effects of Tracleer. I am going to
keep you all posted on how I do too.
I asked my doctor about Wanda....he could not say, just go to your doctor who
knows you and can properly deal with the cough.
I asked about how long it will take to 'take'. I was told up to 2 months and
then a decrease in Flolan would then start. I wonder if Wanda did not start to
decrease too early.
I asked about symptoms and how other patients were doing...I was told that
almost all their patients are not having any bad side-effects and are doing well
on it.
I also asked that if I found that is was not for me if I could go right back to
Flolan and just hold off until further studies and more options. I was told
that I can do what I feel is best for me. That doctors at this point are only
making 'good guesses' on 'what would' work for you, 'you' have to find out what
'is' working for you.
I am truly blessed with the people that are working to help me. I have to thank
my Transplant Coordinator who is there when ever I need her and will find out
any questions I may have. I also have to thank my doctor for being 'real' with
me and not having a big ego. I like it when a doctor can except that they are
making educational guesses instead of this is right because I said so.
Just had to share...I have babbled long enough.
I hope you all find what works for you in mind and body.
My love and prayers,
-Amy from Arizona-

Re: [PHA_Parents] How are you doing, Jan?

2008-11-11 10:24:34

Hi Mitzi and all,

Thank you for asking how I'm