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I hope Nina is feeling better soon and you are able to get some rest.
Take care!
Jennifer

This is Celeste..Noels mom...
I am back on line and trying to change my email addresses...
I hope I can manage it.
Celeste

I've somewhat been in your shoes. My daughter was diagnosed with PH when she was 9 months old....after a bout with pneumonia. From there, she had a battery of tests done to see if we could find what was causing it. No luck. She was put on oxygen 24/7 for about 1 1/2 months and then taken off completely and she was able to keep her O2 levels up on her own. Then, after doing a sedated echo, we found that she had a PDA.....Patent Ductous Arteriosis. When Gracie was 3 years old, the doctor decided he wanted to go in a close off the PDA(which he said didn't cause her PH). He also wanted to measure her pressures in there because everything had been looking good on the EKG, ECHO, etc. On those, there was no more evidence of PH. Well, we had to go to a different hospital for the closure of the PDA and to measure her pressures. We waited for a couple of hours while the doctors did what they needed to do, and then the doctor came in to talk with us. He told us that she
still has the PH and that he was suprised to see she had it (because of the pre-surgery testing they had done had also showed him that it was "gone"). I felt like someone had knocked me off of my chair. I had thought for so many months that she was fine and that the PH had gone away. Well, now I know that PH doesn't go away. The doctor down in Cincinnati then ended up diagnosing her with Primary Pulmonary Hypertension and wanted her to go on night time Oxygen, and start a new medicine called Tracleer (Bosentan). Gracie has now been on that medicine for a little over a year and had her second heart cath. this past March. Things had improved greatly, so the night time O2 was discontinue, but she is still on the Tracleer.

It's very scary to know that your child has PPH/PH. As parents, we want to fix everything for our children and look forward to their futures. I'm not sure how long Gracie will live....I hate to even think about it. We try to think positively and hope that a cure is found. This medicine Tracleer has been a godsend. Looking at Gracie, you would never be able to tell that there is anything wrong with her. We have also had to deal with several Developmental Delays, she has day and night time AFO's (to help straighten out her ankles). She has gotten so used to going to see doctor's that she looks forward to going now. We actually are seeing her cardiologist on Monday and are going to talk with him about a possible referral to Dr. Robyn Barst in New York to get a second opinion. I've heard that Dr. Barst is the best PH/PPH pediatric specialist.

Hope this helped. It is overwhelming in the beginning, you aren't alone in this.
ninasmom24 <paltothree@...

Hello Everyone,
I am just now starting to get the big picture and realizing
that my daughter is at more of a risk than I had believed. The
doctors have said she is chronically ill, but it never really hit me
until now. I am afraid for her, for my family now. My husband has
helped to instill a fear in me that I am afraid to admit that I have.
How serious is this? How frightened should I be? My husband has
this belief that if she does not lower her need for Oxygen, that her
chances of survival go down, is that true? He says he hopes for the
best, but is preparing himself for the worst. He believes Nina could
die an early death. I am frightened by that.
I apologize if I upset others on here or cause any one more pain
than they need.
The doctors never told me, and I never thought to ask, but how
long do they expect her to live? 5, 10, 20 years or more? I am
afraid to ask her doctors, I guess because of the answer they may
give me. They may tell me the same thing that they have been telling
me the whole time. That we can only hope she grows out of this. In
the last 6 months there has been no improvement on her lung size.
They say her lungs need to grow and become stronger. But what if
they do not grow like they are supposed to? What then?
I have also, finally decided to sit down and read the
information that my mom had printed out for when Nina was first born
and admitted. I have learned that she has PPH. The doctors are
baffled, totally! They also say that they can find no evidence of
PPH on her echo, but she obviously has it because of all her
symptoms. Or maybe I just misunderstood them. I am so new to all of
this and I feel like I am lost in a world spinning around me with a
language that everyone else speaks but I cannot understand.
Can someone please help me to understand better, please contact
me by e-mail at paltothree@..., I would greatly appreciate
it.
Thank you everybody for your understanding me and accepting me
into your group. Please know that you and your children are always
in my thoughts and prayers.
God Bless you all.
Patrice

Hello Everyone,
I am just now starting to get the big picture and realizing
that my daughter is at more of a risk than I had believed. The
doctors have said she is chronically ill, but it never really hit me
until now. I am afraid for her, for my family now. My husband has
helped to instill a fear in me that I am afraid to admit that I have.
How serious is this? How frightened should I be? My husband has
this belief that if she does not lower her need for Oxygen, that her
chances of survival go down, is that true? He says he hopes for the
best, but is preparing himself for the worst. He believes Nina could
die an early death. I am frightened by that.
I apologize if I upset others on here or cause any one more pain
than they need.
The doctors never told me, and I never thought to ask, but how
long do they expect her to live? 5, 10, 20 years or more? I am
afraid to ask her doctors, I guess because of the answer they may
give me. They may tell me the same thing that they have been telling
me the whole time. That we can only hope she grows out of this. In
the last 6 months there has been no improvement on her lung size.
They say her lungs need to grow and become stronger. But what if
they do not grow like they are supposed to? What then?
I have also, finally decided to sit down and read the
information that my mom had printed out for when Nina was first born
and admitted. I have learned that she has PPH. The doctors are
baffled, totally! They also say that they can find no evidence of
PPH on her echo, but she obviously has it because of all her
symptoms. Or maybe I just misunderstood them. I am so new to all of
this and I feel like I am lost in a world spinning around me with a
language that everyone else speaks but I cannot understand.
Can someone please help me to understand better, please contact
me by e-mail at paltothree@..., I would greatly appreciate
it.
Thank you everybody for your understanding me and accepting me
into your group. Please know that you and your children are always
in my thoughts and prayers.
God Bless you all.
Patrice

Pam,
Thank you for your concern. I actaully had been seeing a
psychiatrist, but found that I never had the time or the energy to
make it to my appointments. I am also on an anti-dreppesant, and had
found out after a couple of appointments, I had been on the wrong
one and that is why I had felt that nothing was ever better for me.
I was switched to one that better suits my needs. It is helping me
in every way I need it, emotionally. The reason I had refused was
because, one, we are moving out of state. Two, I am still awaiting
to have nursing care set up so I can have atleast a couple of hours
a week to myself with out the kids. It's far from wasy with Nina,
and two under the age of 6! I sure could use a break!!
Patrice

Hi Patrice,

I read your post about your doctor giving you a referral to a psychiatrist and your refusing it. I know that is how you feel at this time. However, if I were you, I would keep an open mind to considering it later if you find you need more help than our support group can provide. I personally am seeing one, but only start after my daughter went on Flolan and had become sicker, scaring me a great deal. The medicine he gives me helps me to deal with things better. I find with all the medical people and issues to deal with that sometimes dealing with regular life too is just too much without the extra help I get from the medicine.

Take care.

Pam (mom to Becky - 15)

Hi Evan,
Thank you for the encouraging letter you sent me. I had no idea
about the NO. But it does make sense, considering that was something
they had tried with Corrina(Nina)that day she was born. But
unfortunatelu it had no effect on her and that is why they had her
placed on ECMO. She is currently on continuous Oxygen and we have 3
of those humungus tanks. We barely have any room left for our
bedroom set in there. Her current flow rate is between 1 and 2
liters. The doctors can only say that she will "hopefully" grow out
of this. That is not too reassuring. Only time will tell.
Jennifer did write me and she was very helpful and did offer
some information that is very useful for us. I did write her back
and thank her. Knowing that she is out there and that we are moving
there and knowing that someone is there to help us, makes things
seem a little easier. Thank you very much.
As for psychitherapy, I was talking to my physician the other
day and I was explaining to him that since we have no nurse yet to
help I am exhausted and there are many days that I forget things and
my mind is a jumble and if there was anyhting he could recommend
that I do to help myself with that. You know what he said? "You need
to see a psychiatrist, let me write you a referral" I refused and
decised to find a way on my own. I know that this site will help me
out. I can talk to people who understand and will not turn a deaf
ear, so to speak. Thakn you again!
Sincerely,
Patrice

Hi Jennifer,
Thank you so much for the information. I know that was one of
our concerns. We are not yet sure where we will be living. But we
were thinking about Cumberland County. My older sister and her
family live there. But if it is too far away from Vanderbilt then I
will have my husband look at apartments/houses out there while he is
there next week. He will be flying out for a week next Wednesday to
get his permits to open a business out there.
I am sorry for your loss. I am not sure what to say. I know
that has to be hard to loose a child.
Thank you again, and yes please, give the information for the
hospital. We all ready are in the process of getting her Childrens
Special Services plan rolling.
Sincerely,
Patrice

Hi Patrice,

My name is Evan and it's pronounced eeeeeeeeeeeee- van. My son is 21 and was diagnosed with PH a little over 2 years ago. He has only Ph that we know of, plus a tremendous heart murmur that was never heard until he was diagnosed (his first cardiologist thought his docs were half deaf it was so loud).

Congratulations on yo precious daughter Nina, you do have yor hands full with so much dealing of the ins and outs of a child with special needs. We also live in California, but we came here because of the sea level. We had live din Colorado, and that may have had something to do with the PH and Sean. Anyhow, here is what I found in the PH survival guide manual- Dr. Richard Channick of USCD says that the smog actually helps with PH, it has nitric oxide (NO) in it and makes beathing easier gfor PH patients. Can you imagine? WEll it sounds goofy but it I believe him, he is a leader in the treatment for PH, so sure! It sure doesn't mean that Sean is outside on smoggy days (believe me living in the the inland empire means there are far more of them than clear days), but I think his beathing is better. WE have O2 in theh ouse, a big giant helio that is filled every 2-3 weeks, and it is here for Sean if he needs it.

He is on Flolan and Tracleer, and has done pretty good with both. I mean he isn't a kid anymore, but he will always be one to me!

Since you are moving to Tennessee, you may wan tto talk to Vanderbuilt University, Jennifer, another PH Mom here, works there and they have a special department of study and research for PH. I think that is right, she or her husband Bill will know. THEY ARE THE GREATEST PEOPLE, hopefully you will be able to connect with them.

You also may want to get the PH patient survival guide through PHA, it is 15 dollars I think, and it is chock full of information for you too. I have both the "oldie" and the newest edition, and even my hubby has gone crazy reading them. He is all about the proposition 71 that just passed out here, he isn't upset about the moral issues, he just wants a cure for PH. Period. I can't imagine such a guy getting all worked up about it.

Sorry, I am rambling about me. If you EVER EVER EVER want to yell, scream, vent, jump up and down, need help with something other parents can do- just post here. You have come to the right group of people here. We share each others happiness, and sadness, joys and sorrows. The bestest part about being a part of thei family here is that everyone understands where you're coming from. It isn't as if our kids are "aliens" here. You get teh best love and encouragement, too. Well at least I feel it. I don't know about evberyone else. But I love each and every other person who posts here, I feel connected because we face similar challenges daily. And to be able to talk about it with normal people and not medical people sometimes is the greatest relief there is. Forget psychotherapy- come here ! LOL!

God Bless your family-

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Dear Patrice,

First of all, my heart goes out to you. Dealing with a diagnosis of pulmonary hypertension is devastating enough without having additional diagnoses show up.

I don't think your situation is abnormal or normal. There are children with pulmonary hypertension who only have pulmonary hypertension and there are children who have lots of other medical problems as well.

My daughter, Becky, is 15, and was diagnoses with PH at age 6. But prior to that she had been diagnoses with congenital heart defects at birth, and had open heart surgery at age 3 to correct as much as was correctable. She also had multiple spleens rather than just one. Since then she has been diagnosed with scoliosis, which has progressed to the point where it almost requires surgery. She also has attention deficit disorder. And then within the last month she has been found to have some sort of rapid heartbeats that occur periodically - like several times a month.

So I can certainly sympathize with your feelings. I have had many times where I have just said "Isn't this enough problems for one child already?" I basically try to deal with things on a day to day basis as much as I can so that things don't get too overwhelming. And even then sometimes I feel like if I see or hear from another medical person I am going to scream.

It helps me tremendously to have this group to talk to, and I believe it would help you, too. These are the only people I have ever found who truly understand how you feel and what you are going through, and that also care.

I hope this has helped a little, at least to know that you are not alone.

Pam (mom to Becky - 15, Johnny -13, and Laura - 9)
ninasmom24 <paltothree@...

Hi,
My name is Patrice and my husband and I had a beautiful baby girl
last December. Within two hours after her birth she was rushed to
the hospital ISCC. From there she was transported to the local
Children's Hospital where she was placed on ECMO for 17 days. A week
after she came off the ECMO, she came off the breathing tube. She
has been on Oxygen since and has breathing treatments and is on
several medications.
She has come a long way and the doctors and nurses did not try
very hard to hide the fact that they didn't really believe that she
was going to survive. They also made us aware of the fact that if
the hospital had not had the ECMO machine, then she would not have
made it. We are very greatful, beyond belief.
She is home and has been home for the last 3 months. This is the
longest period of time that she has been home. She is doing well
despite her difficulties.
The doctors have diagnosed her not only with pulmonary
hypertension, but hypoplasia as well. They have also said that she
has a PFO. Due to her medical history she has GERD (gastro-
esophogial reflux disorder), she is currently on a feeding pump and
takes nothing by mouth. We also found out recently that she has mild
hip dysplasia. I also know that there is concern for possible
scoliosis.
Is this normal? To have so many other problems and not just have one
problem? Or is my daughter a rare case?
Is there any one else that has a child/children with similar
diagnosis or are we the only ones? I am at a loss of who to talk to
and I need someone who I can talk to that's not a doctor or nurse,
but understands where we are coming from.
Thank you for your time. Have a great day!
Sincerely,
Ninas Mom

Hi Celeste,
I am new to this and found your message. I saw the part about
California. I live in San Diego Ca. My husbands work just
transferred him to Tennessee and we will be moving out there in
January. I am going to miss Corrina's doctors. They have been so
kind and understanding. Especially her pulmonologist and her
cardiologist. But we cannot help but think that the polution in the
air is keeping our daughter from getting any better than she all
ready is. There have been no improvements in her ph in the last 6
months. We feel that the cleaner air out east will do her good. Not
only that, but the cooler air,. She really had a struggle with the
90-100 degree weather. Her pulmonologist said that just like an
asthmatic, the heat causes breathing problems. And to add to that I
think that about every other month there has been a new article in
the paper about how the smog and pollution out here is being linked
to premature lungs and other difficulties breathing in infants. I
apologize, I feel that Ca and it's overly polluted air is not worth
moving to. Not including the cost of living!!!--- In

Hi,
My name is Patrice and my husband and I had a beautiful baby girl
last December. Within two hours after her birth she was rushed to
the hospital ISCC. From there she was transported to the local
Children's Hospital where she was placed on ECMO for 17 days. A week
after she came off the ECMO, she came off the breathing tube. She
has been on Oxygen since and has breathing treatments and is on
several medications.
She has come a long way and the doctors and nurses did not try
very hard to hide the fact that they didn't really believe that she
was going to survive. They also made us aware of the fact that if
the hospital had not had the ECMO machine, then she would not have
made it. We are very greatful, beyond belief.
She is home and has been home for the last 3 months. This is the
longest period of time that she has been home. She is doing well
despite her difficulties.
The doctors have diagnosed her not only with pulmonary
hypertension, but hypoplasia as well. They have also said that she
has a PFO. Due to her medical history she has GERD (gastro-
esophogial reflux disorder), she is currently on a feeding pump and
takes nothing by mouth. We also found out recently that she has mild
hip dysplasia. I also know that there is concern for possible
scoliosis.
Is this normal? To have so many other problems and not just have one
problem? Or is my daughter a rare case?
Is there any one else that has a child/children with similar
diagnosis or are we the only ones? I am at a loss of who to talk to
and I need someone who I can talk to that's not a doctor or nurse,
but understands where we are coming from.
Thank you for your time. Have a great day!
Sincerely,
Ninas Mom

hey all
I recently re-financed my mortgage for free even though I have BAD credit. They
even gave me a great rate! Take a look at this service...
http://grealus.com/azwh1
I posted this on pha_parents, if you dont want to be a member anymore just email

Hi Everyone,

Proposition 71 was passed in California this past week. The state will be going into debt of over 3 billion dollars to begin a center for stem cell research. It is the beginning of stem cell research here in the USA. I had the opportunity to listen to my hubby jump up and down today about this. There will be 29 people on an oversight committee to decide how the funds are spent and what to research and how. Well he thinks PAH should be number 1 on the list.

So what did he do? He tells ME to write to someone to get the ball rolling. So I called PHA and spoke with a nice woman named Orchid, and she had NO IDEA about the proposition. Well now she does. I have just sent this letter out to all the doctors listed on pha and phcentral in California. I know we all have differences of opinions about this but, I think since it is a law, then we should push for this disease. It affects so many, from every walk of life and it does not discriminate. Please read the letter I wrote and if you live in California write to all the doctors on the lists with your stories and hopefully in support of finding a place for pulmonary hypertension in the research.

Here's what I sent:

As a resident of California I wanted to write to tell you of the need of an advocate for PAH for the Stem Cell Research Oversight Committee that is being formed because of the passing of Proposition 71. I know that people with Pulmonary Arterial Hypertension may be treated and possibly cured with this form of research. An advocate needs to be heard and for this part of our population. My interest in this comes from the fact my son, Sean, is 21, and he has PPH. He was diagnosed 2 years ago on his 19^th birthday. I feel it is imperative to the advancement of treatment that someone represents this disease. With the new changes in the allocation of lung transplant, stem cell research could be far more promising than the current wait for donor lungs.

My goal is to have someone from the medical field or someone who can communicate with the medical field to make sure that Pulmonary Hypertension is a part of the stem cell research proposition. PH is a part of many other diseases, and hopefully we can have a part of this new and promising research now available to us. My son currently is responding to treatment with Flolan and Bosentan, and is also on the lung transplant list at UCSD.

There are thirty nine days to become a part of the oversight committee. Once the committee of 29 advocates is formed they will go before Governor Schwarzenegger to discuss how to fund and follow the research. Please let your esteemed colleagues know of this and become a part of curing this horrid disease.

I sincerely thank you for your time in reading this.

With Respect,

Evan S. White

good morning everyone....

so....I did call the insurance company and the hospital cannot charge for procedures uncompleted. I had tried to call the sleep center and they were in a staff meeting until 1 pm...when I did get them they said they would not bill.

I kept calling the cards nurse ....I called three times and no one called back so then I decided to call every hour...

Noel was flipping out basically all day...

a cross between mean and extreme depression....man that kid is sensitive about anything that pertains to her health.

one minute she was going off the next minute she was crying her head off scared that this was it. she even threw a whole bowl of soup at her door.......gave the walls a punch or two...

I don't usually tell this type of stuff but I am getting braver here.....It was bad and I couldn't stand it....combined with the stress of not knowing what was wrong with her health...NOW!

so I started my hourly calls to the nurse and only had to do that twice. she had heard that the sleep study wasn't completed and didn't know why we had left in the middle of the night...so I told her and that I had found out by then that the sleep study doc called the card right away in the am....

I let her know also that Noels mood.....head...whatever...was bad and things here were bad.....

so she said call the cards personal secretary right away and have her patch me right through to him....so I did and she put me right through to him immediately...

now if someone would have told me to do this in the am...a whole day would have gone differently.

so he said.....

yes the sleep study doc had called him right away about Noels irregular ekg.....

it was due to this pause that Noel has in her heartbeat....he said she has had this for years and he is not worried about it....he has told me before that as long as the beats per minute are okay then don't worry about the pauses.....and I don't.

but Noel does have a different ekg due to her condition and the card is not worried....may not sound right but Noel has plenty of other stuff going on heart and ph related and some things it is better to do nothing if things are going okay.

he said....why were you there with Noel having a sleep study anyway.....I told him he had said when she started having the behavior changes he had said maybe she needs another sleep study and should see a counselor......the counselor has always fallen through.....no one ever calls back basically....

but I said someone set up the sleep study from his office....he said...she just had one three years ago and she doesn't have sleep apnea...her sleep study was fine.....well her sats drop during sleep that was the finding on the last one, I remembered that.

he was great...told me that Noel didn't need a sleep study...we don't have to go back....he made sure I told Noel all of this....he said we did the exact right thing by not going to the er.....he said I have known when it was time to go to the er before . Yes he was very good and once I got it through to Noel that nothing was really wrong at the sleep center...I told her the girls were just learning and they read the report wrong......the girl we were using was training and the card said they didn't know what they were reading on the ekg.

It is a terrible thing when you have to deal with people who do not know anything about our children or ph patients in general.

Thats whats wrong with our local hospital.....they don't even know what ph is...

my husband who works at the arc here was speaking to a nurse who he knew when he worked at the hospital before he took this position. she used to work there too and has been a nurse for a very long time....he was telling her about Noels condition and she even said she had never heard of such a thing. ....he was freaked out and looked like heck yesterday too by the way....we were all freaked....

and she said she had never heard of such a thing.....I swear hardly anyone around here does....

Yes I am intent on moving .

Noel wants to move to Hollywood and she said that when her father and I die.....she is going to sell all of our stuff and get her oldest sister to take her there because she knows she can make it as a singer.....oh man if you could hear her sing...Cher ......

my girlfriend insists that california is the place to be and I bet I would like it there also.

even if I move to vermont at least we will be near the cards that know about my daughter.

I am not too savy with looking into jobs and stuff on the net....I will have to start checking into things....I don't think my husband is really into moving west although we have so much acid rain up here....I think we need to move west of the midwestern states

we will see.....I need to find out much more about everywhere....

thank you all for being so supportive ....man I didn't know what to think.

I have a friend who also has a disabled child...different disability.

and I don't hear from her very often but yesterday morning she called me and said what is going on up there....and I just started bawling my head off.....for a couple of minutes then I was okay...she told me she just knew she had better call......cool huh...

so nice to know I do have places like her although I would never call her and cry because I can't put that burden on her shoulders....she already had a heart attack.....

but like here.....I know sometimes that if I didn't have the support here.........

there is no way I could survive alone....

thank you for listening and much love...celeste

Must be we are going to have a smooth Halloween cause we already got our big scare, well hopefully.........Happy Halloween.

Celeste,
This forum is for all of us and the feelings we are
undergoing....hate, frustration, sadness and everything else that
comes with the territory.
Don't hold your feelings inside you...we are each other's support
system.
Have you ever thought about moving to California? Lucile Packard is a
great hospital and Stanford is also here; I know that there are a
couple of us who are here in Cali.
Maybe your husband can try to look for a job over here ~ worth a try.
Kiss Noel for me....everyday she is with you is a blessing!
Love and Prayers,
Beverly
mom to Beatrice 11 and Brianna 8 mos Ph dx'd (but getting better)

monday went to local hospital to see new cardio throacic surgeon at local hospital to see if he could treat Noel in emergency....since he was new I thought there was a chance.

1....some old man drip was blocking the only parking space I could find and he sat there talking to another guy and would not move his truck till he was done....even though I asked nicely he made us wait......almost 10 minutes

2. the doc said no he couldn't treat Noel in an emergency ...he said in his opinion we were better off still trying to get to vermont....the hospital we use is about 1 and a half to two hours a way...and I am getting older..and....we have to take a ferry and on and on

3. went for the sleep study last night...

first drove around in the parking garage for over 30 minutes looking for a space that I could park in and get the w/c out also..to no avail.

asked at the booth they told me I would have to park in this lot about 1/2 a mile away....or more...

I said no because of the cold and noel and me having to push all the stuff....

she said you will have to cancel your appointment..

so I left my truck outside the hospital and asked at the reception desk...she said there was no where we would have to cancel and I had better move my truck immediately because they were calling to have it towed....

so we went down to another building and I called the sleep center...they said...no parking would have to cancel...I was so pi--ed that I called security...they said I could park in the er lot..which I thought was really nice and it worked well..

NOW THE FUN PART:

We get to the sleep study no problem....

Noel gets hooked up no problem....

all is going well.....

then they told noel if she got a chest pain to tell so they could mark it for the doc...

she even thought the c pap mask was cool and said she would try it if they wanted her too....very cooperative and all..

well around 1 am she got a chest pain...

it was brief and not bad... I mean Noel gets chest pains that put her on the floor crying so this wasn't too big of a deal....right..

HAHAHAAHAHEHEHEHEEHEHAHAHAHAHEHEHEHE

number one...I don't know how it is where you all are but the people up here in the north seem to be getting dumber all the time...

anyway...next thing you know they taking off the sleep study wires....they said Noel had a chest pain and something was wrong with the ekg and I had to take her right to the er....something to do with sinus...I overheard that but they wouldn't tell me anything....even to tell the card???

well....not doing that...they were already getting Noel all upset like something was terribly wrong.....that will give her chest pain....

I said if it is that bad call a cardio..her cardio any cardio....of course they wouldn't so I said well...we will leave then...I am not taking Noel to the er to have her all upset when she always has chest pain and the doc is not at all concerned about it. he just says turn up the pump....

anyway.....so we left and I had to sign a paper that we were leaving without their permission.

and we came home...almost 2 hours in the middle of the night....I am fit to be tied ....already had a good cry...

they sent my daughter to a sleep study..the girl was a trainee....they knew nothing at all about my daughters heart condition...the girl had never heard of pph or pah or eisenmenger or anything...

so we left and actually laughed and had fun on the way home.....we wanted candy but had none....LOL

so I had told them that I would get ahold of the card this am right away...they thought that was good...

by the way they were not going to give him any info about the study or what happened because they had to stop it short because of a chest pain....dammm...we live with it every day.....

anyway.....we went there ...they were totally unprepared...and made a big deal...upset Noel...upset me...

so I call the cards office and the secretary told me that the nurse wouldn't be in until later this afternoon and if she had time she would call me...

the secretary said if she has chest pains take her to your local er....now they know I cannot do that because everyone here insists that they don't have the expertise etc. or anything to treat someone like Noel even in an emergency....

on the other hand the cardio thoracic surgeon was an awesome man....he was surely taken with Noel..he thought she was doing fantastic and thought the care she must be recieving was excellent...he told me he thought I was doing an excellent job and he just couldn't get over that we have lived here all these years and she is doing so well....esp with everything going on and ds....

That did make me happy....

but I am so upset with the card and all ....

you know Jennifer wrote to one of my posts and she made me feel like cards are sort of like ego maniacs and if they can't fix something they get frustrated and thats why they may seem not to care or something....

now I know for sure the truth....Noels card really doesn't give a sh-t about her anyway.....no one around here does.....she couldn't even get a flu shot in ny because they said they didn't care what type of hypertension she has that is not a chronic condition.....

I am praying hard that I can find somewhere to take Noel and get out of here and that Ron can get a job somewhere with benifits...where Noel could get proper medical care ,

socialization and a life....maybe we could all have one.....grrrrrrrrrrrrrrrrrrrrrr...

thanks for letting me vent...much love celeste

I am curious....has anyone else ever been to a sleep study where the people were so totally unprepared for what was wrong with the patient.

gotta run....Noel is up...

Now I can hear her in the bathroom....

about the chest pain..and why did they act like that...and she can't help it if she is different....

ought to be a fun day....getting her calmed and over this...now she is saying ...no one should treat her this was just because she had a small chest pain......I hope you understand that I had to leave the hospital and come home. If I would have taken Noel to the er....at the teaching hospital....she would have been poked prodded and they would have said things like the death word ...like the have done before and then she would have really had chest pain exacerbated by too much stress.....love me..

sorry I had to whine to everyone....hope you don't hate me for it but I am very stressed lately about Noels condition due to the things like bad chest pains and no one does anything.....ugh...

by the way...Noel since we are going up with the remod again has had sats in the 80's....her color looks pretty darn good too....feet still dark but hands lips etc....looking pretty darn good....

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I posted this on pha_parents, if you dont want to be a member anymore just email

Hi Michelle,
I remember you and Rayni from the PHA conference. I am glad to hear
that Rayni is doing well.
I don't have any personal experience with growth hormone therapy but I
have cared for children who were receiving growth hormone therapy while
they were in the hospital from other causes. I can appreciate your fear
of surgery. I delayed replacing Joey's central line until it had almost
fallen out because I was afraid he wouldn't survive the anesthesia.
That was one occasion where me and the card had some intense
disagreements, and I must admit the card saw my mother bear side. Joey
gave some support for my position when he unexpectedly quit breathing
in the recovery room after the surgery just when his cardiologist came
in to check on him. The cardiologist and the anesthesiologist wound up
bagging him and reversing his narcotics and it all wound up okay. And
the card and I emerged with a new respect for each others skills and
opinions. So believe me, I understand fearing any therapy that might
create a possibility for surgery.
I have cared for children who required surgery for a slipped hip, but I
have yet to care for one which was caused by growth hormone therapy.
But I don't think you should use my personal experience as a guide for
making a decision.
But what I do feel compelled to tell you is that one of the saddest
things I have seen in my nursing career is a young man in his 20's who
is crippled and chronic pain from osteoporosis caused by years of
prednisone therapy. Before human growth hormone was able to be
genetically synthesized, it had to be manufactured from cadavers, so
the supply was very limited, and therapy was not available to people
like this young man, neither was quitting prednisone therapy, so his
osteoporosis progressed to the point where he is now in chronic pain.
Once the bones have deteriorated to that point it is a very hard
process to try to reverse, and I think it is generally considered
irreversible.
Now I see they are giving a lot of these younger kids who are
chronically receiving steroid growth hormone. I'm not sure how well it
works, because I only see them in the hospital for a short time. Your
endocrinologist would know more about that. But if it prevents
osteoporosis from progressing to the point where a 20 year old has a
dowagers hump like an 80 year old lady i would tend to be in favor of
it. I would worry more about the osteoporosis than I would about Rayni
being small. Because once the bones become brittle enough to cause
fractures you could be in for years of chronic pain. So, any therapy
that could strengthen Rayni's bones would have definite benefits, even
though they might not be immediately obvious.
Say hello to Rayni for me. It is good to hear from you, Michelle.
Jennifer

Rayni's endrocronologist is talking about putting Rayni on growth hormone.
Last I heard, Rayni's immunologist and pulmonologist said it was okay, but
they were waiting for the okay from the cardiologist. The way I understand
it, there is 1 major side effect that has a very low occurence, but that
would require surgery to the hip - and, like I've read from other parents,
surgery with Rayni's ph scares me to death. However, the endrocronologist
said she has been treating children for 6 years with growth hormone with
about 100 children getting it at any one time and she has only seen one case
where the hip slipped and required surgery.
I always hesitate about something new with Rayni. Things are going fairly
well right now and I don't want to rock the boat. But, she is so tiny. Her
bone age in her fingers is 5 year, in her hand and wrist 2 years. She 39
inches tall. She is 7 years old. Her size doesn't normally seem to bother
her, but I wonder about what she doesn't tell me. The endocronoglist also
said that one of the side effects would benefit Rayni - that it would make
her bones stronger. Her osteoporosis scares me, she is very frail - I think
that bothers her more than the size - she wants to jump up and down on
everything - even though the doctor told her she shouldn't.
I just wandered if anyone else's child has been treated and get some
opinions from the best - because you all are defniitely the best!
Thanks so much.
Michelle M-W (Rayni's Mom, 7 years old, SCIDS, 6 1/2 years post cord blood
transplant, pulmonary fibrosis, secondary pulmonary hypertension, on double
lung transplant list at Childrens Hospital in St. Louis, zantac, septra,
predisone, IVIG, calcium, oxygen 24/7, j-tube, flolan)

WOWSERS

You reply quickly! I know there is a difference between beraprost, it is a vasodilator, so I assume that it was "scrapped" like you said because it wasn't making money enough to pay for itself somehow. There was a study going on here using it, but who knows about htat one. Sean's transplant pulmonologist said it wasn't for him, and he was part of the team who originally formulated and worked on the creation of Bosentan. He and I had a discussion about Bosentan, he thought I was a dolt, and when I explained my understanding of the drug, he was shocked. It is a a selective endothelian blocker, and the thought is that it would reduce the endothelian build up in PH patients (something that happens to them).

Here are some of the side effects of the bosentan- Sean was more flushed, and had headaches and stomach aches when he first started taking it, but now it seems to have helped him with the Flolan (outside of the problems he's had). He has a rhc in January, he refused it before then (my son can be pushy as his mom), so we will see then what the results are from that. All I know is that he had a mean pressure of 110 at rest when he was diagnosed. Now hopefully the pressures have dropped like crazy. If not, we'll be seeing wha thappens next.

In March of 2005 I know here in the States the whole catagorization and such for transplants will change, where patients have to do the 6 minute walk test and have echos or rhcs done every 6 months to stay on the list. I believe they are trying to prioritize patients who need the transplants first to first place. This often can put PPH patients at a disadvantage, because theya re following people to see how long they can survive on the waiting list versus who needs it now. Sean is already near the top of the "old" list, but he isn't ready for transplant, the meds are working to keep him stable (as far as I see). I will be gratefu that he will grandfather in, as he has been on the list and not lose his placement so when he needs the transplant he can get it. I just would like to wait until the survival rates are better, there is a 60% mortality five years out and that isn't good enough for Sean.

Seems I am a rambling woman.. sorry!

thanks for the input, I am just trying to keep up with the world of PH- and it is interesting to see how the disease is treated throughout the world..

Have a great week!

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Hi Chris,

Can you tell me why the doctor didn't want to combine beraprost with bosentan? I am curious because Sean is on Flolan and Bosentan. He wants to get off the pump. But I don't think it will happen until another generation of drugs come out for PPH. He has been on Bosentan for almost a year now and it has done weird things to him, he was fine for the first 6-7 months, and then his liver enzymes went all crazy so he is only on the half dosage now. Then the last visit to the specialist, she said he had too many red blood cells. I thought that was a way his body adapted to the lack of oxygen by making more little oxygen carriers. But now they are looking into WHY it is like that. I find our easiest times are when the doctors aren't picking at him and trying to figure "it" out. Sean has idiopathic PH, so he is a mystery kid (aka Lab specimen for the doctors).

I was just curious as to why they didn't want to put Tara on the Bosentan. Oops and I rambled. I hope your change of medicaitons and everything are going well for your family. I just dislike that not all drugs are available everywhere for everyone. Whoops I'll stand on a soapbox about that. Sorry.

Hope You are Well,

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Dear Jennifer,

I wish you the best of luck on your new position.

I am sure you will be great at whatever part of Vanderbuilt you are working in. Lucky are your patients.

I know it must be very hard for you and I really admire your strength and dedication to the field. I was an LPN before and I don't think after all of these years with Noel and loosing my parents that I could go back to any type of health care.

I want to thank you for your continued help support and friendship on the list....with all you have going on......you still take time to be a part of our lives .

Thank you Jennifer .....you are one great lady doing great things.....I feel lucky to know you....much love celeste

Hello everyone,
Rebecca, welcome to our group. I am Jennifer and my husband is Bill. I
am a pediatric nurse at Vanderbilt Children's Hospital, and Bill works
for an automobile service department . We are the parents of three
children, Emily, 21 and in college, Forrester, 16, and Joey, now in
heaven, who died of PPH almost two years ago at the age of four. My
experience was a little different than most people's because our son
was diagnosed at Vanderbilt, which has a PH center, and I found that
the doctors were very receptive to offering new treatments.
Unfortunately, our son had rapidly progressive PPH. Flolan and tracleer
were able to give him a high quality life but did not save his life and
it was our decision that we did not wish to transplant him. But we
found some very good friends in this group while we were embarked on
this journey, and I like to keep up with what is going on with them. My
husband, Bill, left his job to be the primary caretaker for our son
after his illness was diagnosed, and I continued to work as a nurse ( I
had the better medical insurance, and we all know how important that
is). Most of the primary caretakers in this group are women, so that is
another way our perspective is a little different. Now that Joey has
passed on, Bill is back working for his former employer.
Rebecca,I must say, when Bill and I have a difference of political
opinion I find we are both happier if I keep some of my political
opinions to myself. (Uh,oh, I blew it now, he'll read this online.)
I don't know where anyone gets unbiased information, I have just about
despaired of there being any in this election.
I think you will find plenty of friends here and comfort in knowing
that you are not alone. Many people have children with other medical
condition besides PH, some have children with primary pulmonary
hypertension and no other disabilities. But we all have children with
high medical needs and know the stress that this brings. Well, I don't
have a high medical needs child anymore, but that leaves me with a
little more time to write.
I am working full time and taking five hours of graduate courses and
that is still nothing compared to the stress of day to day life with PH.
Evan, sorry the trip to Vegas had to be accompanied by a bug. Nothing
worse than getting sick on vacation. Hope the next trip is more fun.
Celeste, I am glad that Noel is doing better since they upped the
remodulin. You and Noel are always in my prayers. Connie, you, Tony and
Samantha are in my prayers as well.
Pam, I'm so glad you spoke up about the teacher and Becky is getting
the schooling now that she deserves.
Terry, get Nick one of those athletic water bottles and tell him to
keep drinking. They come in cool colors now and my kids think it is the
style to have one of your own, anyway. My daughter is always carrying
hers around with her.
Chris, I'm happy you finally have an answer and a plan to deal with
phasing Tara off the betaprost. What a crisis! I had to smile about
when you said the card had seen your bitchy side. I'm sure that kind of
crisis would have brought out the bitchy side in me as well. I think
all of our doctors have seen the mother bear in us, but I have to work
with my card, who really is a sweet man ( but he has still seen the
bitchey side of me). When our son died, he came up to me and hugged me
and asked "do I still get to walk by you in the hall?"
I've got a new job. Right now I care for children throughout Vanderbilt
hospital as a float nurse. I have a different assignment every day,
depending on which unit is short that day. When I came to Vanderbilt in
March of 2000, I had 13 years experience as a nurse, most of it in
pediatrics, but some with adults and some in adult critical care. Joey,
our youngest, was a small child who we thought was our healthiest
child. Joey had an out of hospital arrest in November of 2000, I
performed CPR and resuscitated him (in a parking lot, in the rain) and
that began our PH journey, which of course led back to Vanderbilt. Many
of the doctors and nurses who cared for him still remember him, and are
my coworkers. Sometimes that is a good thing, sometimes it makes it
very hard to separate work and home. Sometimes my work gets a little
too close to home.
Starting November 15 I will be working full time at Vanderbilt
Children's hospital on the floor where the cardiology and oncology
patients are treated. This means I'll have to learn how to give
chemotherapy. I have no experience with chemotherapy, but I frequently
worked with the cardiology patients before they began being placed with
the chemotherapy patients when the hospital moved to a new building
last spring. I will be going to class to learn about chemo (on top of
my graduate school load). This also means I'll be caring for children
with pulmonary hypertension and heart conditions who are hospitalized
as well. I haven't cared for anyone on flolan since Joey died, but I
did care for some children on flolan before Joey died. I hope I am not
doing too much too soon. Sometimes things get pretty weird, and I don't
know a whole lot of other medical professionals who are also bereaved
parents who can give me guidance on this. So please keep me in your
prayers as well. We can all use a little prayer.
Love to all,
Jennifer

Dear Parents:
My husband and I are taking different stances on the presidential
election (I won't tell you who's voting for who). One of the
principal concerns, as you might of imagine, the future of health
care.
There is a lot of information floating information and a lot of
people are making pretty extreme claims. Can anyone point us to an
unbiased source of information for some real answers.
As I am sure you understand health care is critical for our families
our concerns are focused on our particular case more than the big
macroeconomic picture.
Is the consensus on this group as to which candidate might improve
the healthcare situation. Are there specific issues that effect
this community that we should be aware of.
Thanks for your help!
Very truly yours,
Rebecca and Eric Durrin
Parents to
Ashlea 14
Brookie (in Heaven)
Chloe 3 (spitfire)
and of course Ernest 8 months PH, DS

Pam:
I'm glad to hear that you got Becky's schooling all straightened out!! Even though you get tired of always dealing with people for Becky, just try and keep in the back of your mind that you're her only advocate! Without us moms, who knows what would happen with our children!!
Connie

Hi everyone,

Well, I did succeed in getting Becky's lady teacher who wasn't doing her job removed. As it turned out she had about decided herself not to work for us anymore since she was preoccupied with her pregnancy. So she wasn't upset about it, which helps.

Becky's other teacher, Mr. Holden will now teach Becky all of her subjects. That is fine as he is an excellent teacher, makes learning interesting and works well with Becky.

Thanks to everyone for listening to me and giving advice about this. Sometimes I just get tired of dealing with people about Becky - doctors, nurses, school, etc. and freak out.

Pam (mom to Becky - 15 - severe PH, scoliosis, congenital heart disease, multiple spleens, anxiety disorder, etc.)

Hello Everyone,

We're back from Las Vegas, and it was something..... Rained all week, Dennis caught a bug, and I got to barely spend fun time with Sean. He and Joe saw two shows there, "Bite," and the "Tournament of Kings, " which Sean treated us to last night. I didn't get to see Dolores, WAH! But it was fun knowing she was right there (Probably better too if Dennis DID have a bug)! We made plans for a ladies weekend and I hope it happens really soon!

Dearest Ajay- my thoughts and prayers to Almighty God are being said for you and your Sejal. I wonder if we could raise money somehow to get better treatment for Sejal maybe to bring your family here somehow through donations. It's a thought, and I know Kathleen plus other readers know how to do this.

OMG DEBORAH!!!!!!!!!!!!!!!!!!!!!!!!!!! I am a chicken butt, I was scared and I ran. Please forgive my absence in your life as you are far more than a mere spark here, you are loved by me so much! I am so grateful to hear the wound is closed now (open wounds scare me-I remember Sean's), and to hear your liveliness and love and joy in every word is such a delight and song of Praise by me! Happy Belated Birthday Girlfriend, here are hugs and love from me to you (((((DEBORAH I LOVE YOU))))))!

Susan, I admire you, and you are such an inspiration to my soul daily. Thank You. I strive to have your love so present in my daily life.

Becky thanks for the warm wishes and glad to see you're back online! How is Patti? How are you?

Dearest Pat, my prayers will include you as well, my dear friend and I will not cease if you'd like. Much love and concern here on behalf of you, and your health.

Jolene, sounds like a cause is yours for the fighting on the eastern coast, giving Ajay the name of Dr. Murali to him... Glad to see you smiling and being yourself! Keep up the great work, maybe you could organize something to help Ajay and his family...it's a thought at least. I know you're a go getter! :).

To Every One else, Glad to see you and I will write more as I read, my eyes are fuzzy from the road trip....

Tired, but Grateful to be home,

Evan

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

sorry I sent the other message half written.

I would keep calling that cards office....I would find out who was on call and speak to them...I would call a hospital where he is associated with and keep calling someone until someone listened and reassured me things will be all right.

I am not sure what would happen but at least there would be a plan and it would give you some piece of mind.

I wish there was some thing that I could do....I feel terrible that you are having to go through this stressful time. I will be keeping you in my prayers...and I would keep calling. I have learned to be quite pushy but in situations.....you have to be.

much love celeste

is there any type of a ph association or anything where you are....maybe they could help...

Hello everyone,

I think I'm heading for a big stress out week. I am at the point where I can hardly sleep, so please forgive me for venting.

I found out at the beginning of this week that Beraprost which Tara has taken for three years for her PH is now unavailable as the drug company has ceased making it due to no profits. I have had to give her dosages from a bottle that went out of date last month, as the pharmacist told me "I had no other choice" I now only have about 10 days supply of that left.

Tara's cardio is about 300 miles away and I have phoned three times to find out what is going to happen...left messages for nurse to call me...and have heard nothing back. Usually she phones me back same day...I am really upset (crying now) that I don't know what will happen when the beraprost runs out...if she will go downhill or what.....She will be still taking her viagra so hopefully be ok. The pharmacist asked me have I heard from the cardio, cos he was told that the beraprost is history. Do any of you know the liklihood of anything adverse happening once beraprost abruptly stops? Does the rebound thing happen?? I know so little.

Tara has been going so well, I can't handle the thought of her perhaps declining. Thanks if you read this, it helps me to know you are all there for me to express myself. I really appreciate you guys and I know a lot of you have been thru much worse. I just hate how my mind can wonder to negative stuff. I do feel a little better by just writing this, its late gotta try to sleep.

Best wishes and prayers going out to you all.

Chris

mum to Tara

Chris:
I don't know anything about the beraprost. Maybe your cardio has just been getting lots of calls regarding this and that's why he hasn't gotten back to you.
Hang in there and know that we're here for you whenever you need to vent!! Isn't that what friends are for? And we all have times when we need to vent.
Connie
(Mom to Tony, 14, pph, etc., and Samantha, 16)

Celeste:
I'm so glad that going up on the remodulin has helped Noel. Sometimes it is completely amazing how quickly these kids can react to their medicines.
Don't ever worry about whining on here. That's what we're all here for. We're hear to share the good times and the bad with each other. We all know what this disease is like and the toll that it can take on your life and the life of your child. So who better to turn to than someone who understands!! We are always here for you!
Love,
Connie

Hi Rebecca,

Here is the name of a PH specialist in Portland. Sorry the font is crazy, I copied and pasted it from the PH Association website. Hope this helps.

Edelman, M.D., Jeffrey D.
Last Updated: 5/30/2002
Asst. Prof. of Medicine

Oregon Health Sciences University
3181 S.W. Sam Jackson park Rd., Mail Code UHN-67
Portland OR 97202
Phone:503-494-7680 Fax:503-494-6670

edelmanj@...
http://medicine.ucsd.edu/pulmonary/Fedullo.htm
Experience
Number of years involved in treating PH: NA
Number of other doctors in practice experienced with PH patients: 1
Number of nurse coordinators experienced with PH patients: 1
Board Certification
Primary: Internal Medicine
Secondary: Pulmonary
Treated Conditions (in the past year)
PPH: 10
CTD: 10
CHD: 10
portopulm: 10
parenchymal lung: 5
CTEPH: 5
HIV: 1
Treatment Modalities (in the past year)
Flolan
Onsite: 6
Referred elsewhere: 0
Bosentan
Onsite: 6
Referred elsewhere: 1
Remodulin
Onsite: 1
Referred elsewhere: 0
Thromboendarterectomy
Onsite: 0
Referred elsewhere: 1
Lung/Heart
Onsite: 0
Referred elsewhere: 4
Clinical Trials
Remodulin Sitaxsentan

I know they have specialists at Stanford, you can always jump in the car....Terry, who has a son, Nick, lives near there and she can tell you great information about the hospital. If you don't have success here, there is another specialist in Oregon. There are a few other mothers on this board who live up north, maybe they can give you some information too.

Get ready for the good fight Momma! You can do it and you have a lot of help here too- people to "pump you up" when you have to go and fight battles.....Believe me you'll have some, but you'll see, it will all be alright. Being pushy and agressive and the number one advocate for your Ernest is certainly what you have to do, so many doctors are very uneducated about PH and they still have the mentality of their education, which is somewhat outdated considering the treatment for pediatric PH has grown like the treatment for adults---by leaps and bounds!!!!! Every year brings far more information and I think that doctors have so much to deal with anyways that some of the specialized information is set aside because of the need to provide care. Yep, don't give up with this pediatrician-find another and fight like the dickens for your little guy!

Peace and Blessings,

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

well.....I finally got Noel to go up with her remodulin yesterday...late in the afternoon.

by last night her color looked way better....by this morning she looks better.....feet look near normal color and her voice sounds way better.

of course her eye is red so I put some ointment into it...I would think she could have pink eye but you have to get that from somewhere I think?

anyway.....first I would like to thank all of you who let me lean on you and cry my eyes out when I have to see Noel like this. it is only all of you that literally carry me along some days and I appreciate it more than anything. You all mean more to me than anything..just for being yourselves.

Next my head is in a spin again....

I can't believe how someone could go up with remod.....they say the effects take 2 or 3 days to notice...and be feeling so much better right away.

looking better almost immediately....the pharmacist finds it amazing also.

Noel still feels tired but she is not crying with chest pain.....

I have such a hard time thinking about how this pump and med is doing with her and how I know for sure she would not be here if not for these meds.

how things still must progress along.....at least in her case...its hard to believe that she could be like that without the meds....even my husband says things like that.

it totally blows my mind that she can look like she is practically into complete heart failure if something goes on with the pump or if it is time to go up and then when she does go up....how much better things are and I don't expect perfection....even going out for a quick jaunt to the store or for a ride in the car makes me happy.

I did ask this time if I could go up a few more times without calling the card so I can turn up her pump three more times I think before I have to call again. Maybe this will keep her feeling better for awhile, even if I don't tell her and turn things up when she is asleep.

well, I just wanted to thank everyone and tell some good news for a change. I hate to whine and bring everyone down but I can't believe the difference just by turning up the med and I just had to share......much love celeste

Hi Pam,

CALL THE SCHOOL DISTRICT IMMEDIATELY!

Then talk to the supervisor of homebound instruction and tell them EXACTLY what is going on. Becky does deserve better, and you ARE paying for her education, like you said. So if they give you any slack, request a hearing. I am adamant about things like this as I believe every kiddo young or old should have the right to an education. And Becky is a smart young lady- she deserves intelligent, on time teachers who teach! Don't let them try to snow job you. I would request another teacher, instead of the lady, it sounds like her priorities are out of whack. You could be doing what she is doing and then demand that woman's salary for giving assignments. Grrrrr it infuriates me (oops obviously).

Okay, I just kicked the soapbox out from under myself. I would be right there to talk to these people if miles of land didn't separate us. Let me know if you need any information, okay?

Good Luck and God Bless!

Evan

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Hi everyone,

I am having a problem with one of my daughter, Becky's teachers. She has two teachers who come to the house twice a week and teach her through our local school district's homebound services program. One teacher teaches math and history - he is great, very on time, tries to make things interesting, makes sure she stays up with the regular class. The other teacher who teaches science and english has turned into a "let's see how little I can get away with and still get paid".

Last year she was pretty good, but this year the longer the year goes on, the less she does. She is cutting short the amount of time she spends with Becky, she doesn't teach - she just brings assignments for Becky to do, and this past week she spent a long time on a personal phone call while she was supposed to be teaching.

What I'd like to know from any of you that have an opinion about this is whether I am expecting too much from a homebound teacher? I hate to confront people so I really don't want to talk to this woman about this, but I am getting angrier and since I pay this school district property taxes every year (and they aren't cheap), I think Becky deserves to get better than this.

Let me know what you think. Thanks.

Pam (mom to Becky - 15 - severe PH, multiple spleens, congenital heart disease, scoliosis, ADD, anxiety disorder)

Hi Rebecca,
My son Benjamin is 4 and has PH and also has DS. He was diagnosed
from birth with PH by a pediatric cardiologist. The cardiologist
waited until he was 18 mos. to do a cardiac cath and decided his
pressures were too high and they needed to repair his VSD. They
then decided to first do a lung biopsy (a little extreme) to find
out how severe the PH was. After the lung biopsy showed the PH was
boarderline too severe, they decided to not repair the VSD and do
nothing. The cardiologist has basically written Benjamin off as
nothing can be done. I am currently checking into new doctors who
know more about PH. I just spoke to a doctor last week on the phone
and she told me she was very surprised that Benjamin's VSD wasn't
repaired when he was about 4 months old. She said kids with DS have
higher pressures anyway and the VSD should have been repaired as
early as possible to prevent further lung damage. She was very
surprised the cardiologist waited until he was 18 mos. old to even
think about repairing the VSD.
The moral of the story is...make sure you don't wait too long to get
the best care for your son. Now I wonder if the VSD was repaired at
4 mos. if his lungs would be better. Oh well, live and learn.
On the positive side, Benjamin appears very healthy on the outside.
He is a very happy, 4 year old and goes to preschool everyday.
Because of the DS he is more like a 2 year old, both in size and
abilities. He is on oxygen only at night when he sleeps and is
taking no medication.
Lori (Ben's Mom)

Welcome Rebecca,
My son Josiah is almost seven. he was diagnosed with PH as an infant. He
also has a variety of other issues, including significant cognitive
deficits. He is currently on Tracleer and doing very well. Prior to the
Tracleer (which he has been on for 18 months) he was extremely short of
breath and had very little energy and stamina. He has been on continous
oxygen since birth. Now he can be off of the oxygen for a couple hours at a
time on a good day.
Blessings to you,
This is a great group with a lot of wonderful people.
Jan Windz

Hello my name is Rebecca and my sons name is Ernest. He was diagnosed with PH
this past Tuesday. He is 7months and has Down Syndrome. I am really nervous
and wondering what happens next. The doctor says there is nothing to look for.
That scares me. What have other parents experienced in their children. I do
wish someone could share their experiences with me.
I look forward to hearing from someone! Thank you.
Rebecca

Hi all,

Trey is scheduled to go to Denver with Dr. Ivy Nov 10-13th to change from Flolan to remodulin. Is anyone else going back at the same time?? Want to get together?

Sunnie and Trey (age 11- flolan 7+yrs)

Hi Evan......How is SEan doing? I always have to check first thing in the morning to see if there are any updates?

Noel hasn't been doing that well....she sleeps all the time and as of late she has been having these terrible chest pains....I am going to ask on the list if anyone else ever had to deal with this. sometimes I think it is going up with the remodulin that forces her heart to work....the top part stopped long ago but the muscle was starting to move again...and maybe this is it. My husband says maybe it is because she sings and dances around...next thing you know she is on the floor...she can't breathe....face blue....maybe this is too much and making her have chest pain. It really frightens me and makes her cry. I did speak to the card's nurse about it because I wanted the card to check her out....she said....there isn't anything more they can do right now and I should try and talk her through it. Well....duh....like isn't that what I have been doing and if it makes someone practically freak out..when they know I have a calming influence of ner....ugh!!!!

enough of that...just something I will have to try and figure out myself like always!

I am sorry your adoptive daughters sister had a baby with ds and ph. What a rip! but....if the ph is secondary to a heart defect and the baby is still under a year and a half....they may be able to correct this surgically and make the ph go away...they have also had success in ny with a bit older babies making their pressure go down with flolan and then correcting their heart and then the ph can go away....sometimes mild.

I know something about this because this is what I had always hoped for Noel. I asked and read and was very hopeful because she has those heart defects.....she has a huge avsd and her septum is just a very thin peice of membrane...so they call it a complete av canal...scary!

any who...no matter how many docs told me Noels ph was primary...I was sure it wasn't and was due to the heart defects....well when we went to nyc to see dr. barst....I knew it was primary beyond a shadow of a doubt then and the method I had been hoping for...a glimmer of hope....was banished.

Bummer ....but then you go on. I always think what a rip...how could someone have these bad heart defects.....be born with severe ph and have it be primary...what are the odds of that happening. It hurts me deeply when people make the comment that Noel got a very bad deal of the cards.....makes me almost cry now because I hate this disease too. It is not ...f-----g fair.....to say the least of how I feel about ph.

Noel had it all of her life and I had never met anyone else with it....until we went to the support group.....it is small...very few phers up here...but I couldn't believe how they all shared similar symptoms...at first of course I was so nervous I didn't notice but as time went on....and I have to admit...sometimes I don't even want to go to the support group and am relieved if Noel won't go. many times on the way home from vermont....Noel will be sleeping in the passengers seat and I will be thinking about the meeting...and I will start to cry. breaks my heart every frigin day....not just for my daughter but for the others also....

Oh well...I am sorry if I doom and gloomed you out...I didn't mean too and I know you must be at wits end with Sean. Have they replaced his line yet? Your story about going to the hospital was cool....the part about SEan knowing everything to do ....very sad...but he is very cool.. my heart breaks for Him Evan....i know Noel hates having ph....and I am sure somewhere he has feelings also....and it isn't easy to live with someone in the age group either.....wha! I know Noel hates the fact that she is going to be 21 yo in Dec. and that she still needs her mother on some level..she gets going and tells me she hates me for having her like this....whaaaaaa...

we did contact make a wish many years ago...actually the pede card did it because we have heard so many times Noel wouldn't make it much longer...she wanted to meet xena then...they said she was too sick to travel....not the doc..it was make a wish...then she wished for a hot tub....so the pede card wrote a letter that she could get one..and he told us ron would have to put something on it...I am not the plumber....to keep the heat at 80 degrees...no problem.

then make a wish said....they felt she was too sick for a hot tub that she could have a bed room makeover since she would be spending so much time in there....we just had given her a bed room makeover so we didn't get anything from them.....when I contacted them again they said they would rather not deal with us due to noels condition and what happened before...they suck too...basically!

Yes i have to look into some way for Noel to meet Cher...even if I have to drive her to CA in a rented car all by myself....If I had to for her...I know I could do it....in my younger days I drove to NM.....it can't be much longer...LOL.....we could take our time if it took two weeks...Noel cannot fly due to her pressure problem.

I am on a downsheart list.....if Season would like to speak to someone who may have been there or get on the list or i can ask if someone from there on the list could visit her...don't hesitate to ask.

I will be praying that this baby can be corrected...we were told at one point that if Noel would have been dx under a year and a half old there would have still been a chance at repair because all the arteries and stuff are so flexible....but after that.....once the pul artery gets stenosed...forget it....they also have so much more knowledge now. It is very sad to think of this young mother and all that she will have to go through. but people do it and on our list babies have gotten corrected and done wonderfully.....I have been on there for a long time and its neat to see what some of these youngsters are accomplishing and its nice to see their good color when the moms share pics. I am always so happy for them and it makes me feel happier also.

Oh well..I had better run.

as you probably have guessed ...I was blessed with the gift of gab....LOL.

much love and keeping that son of yours in my prayers......and you too...much love celeste

thank you for the information on the green cards I will have to check that out....hardly anyone speaks spanish up here....english and french (canadian) ...

So sorry to hear that so many of our kids are having problems this
month. My little Terrence is also under the weather but hopefully he
will recover soon. Hang in there and it will be Thanksgiving and
Christmas soon, hopefully a much more enjoyable time for us all.
Will keep praying for everybody here. Take care,
Lilian

dearest Celeste-

You can get the cards from pha- go to there website, then store then information about ph I think. The best part is that they are FREE, as well as big and small posters of what PH looks like (from the inside) and many other informative items. I sent for them when we got the survival guide, and am going to get more for PH awareness month. Would be nice if they were in Spanish too for out here, many people speak Spanish over English- I mean regular people,like you and me. Last year another member, Barbara, put them in the trick ortreat bags with candy- giving parents information that could save someone's life.

I found out last night that my adoptive daughter, well her sister had a baby boy last month, Ryder, and he ALSO has PH. When will this damned disease STOP? I may be straining your brain soon too- Ryder is a Down's boy, with PH, and other assorted syndromes/etc. Amber called me last night as I was going to the hospital- and I really couldn't talk to her, but I bet she will be calling me today to find out more information about her nephew.

His Momma, Season, is so young to deal with all of this, she is barely 20! And then to put this on top of being a new mom of a child with special needs, I just hope they are okay. I know Ryder is in Denver's Children's Hospital, so that is a good, no, great thing as Dr. Ivy could be his caregiver. That would be a blessing in this day, not to mention a miracle!

Okay have to get my day going, my back is full of pain, but there is waaaay to much to do to let it keep me down.

Hope Noel is doing great and tell her from me that I am SO proud of her wearing the O2 and now time to tackle going up on the remodulan.

Hey, you should contact Make a Wish and ask about a trip to LA, or write to Cher's fan club/e-mail if there is one and tell them that it is Noel's dream to meet Cher. I bet she would be interested in that. Well hopefully she would be. If not, maybe we could get her interested...ok I am rambling......

much love back to you and yours,

Evan

Hi Sean,
Get well soon.
On Sun, 10 Oct 2004 Jennifer Nelson wrote :

Evan,

My thoughts and prayers are with you, especially since I recently went to the ER with my daughter, Becky, and was reminded of how much I don't like hospitals, and all the useless procedures that go along with being in one. Hope Sean is better and out of there soon.

Love, Pam
Lady Evanne <ladyevanne@...

Hi Everyone,

This is a cumulatie quickie- I am off to the hospital to take food to Sean- he refuses to eat the food there- his direct quote, " MORE PEOPLE DIE BECAUSE OF THAT CRAP THEY CALL 'FOOD' IN THE HOPSITAL..." Yeah he knows how to sucker his mom into getting him the "good stuff" as ususal.

Last night they immediately put him on Zyvox that loverly $1000 a bag IV antibiotic, and hopefully the PICC will be replaced tomorrow, no one can do it over the weekend (and they call this a hospital?). So we're in a holding pattern too, but Sean's spirits are good- that is our best defense towards this insidious dang disease.... Doctors and nurses just look at us and smile, either thinking we're completely daft, or that we're just crazy (yes I know it's the same thing) but laughter and stupidity keep us basically sane. I only had to go after the nurses outside of the emergency room last night- the triage lady and the receptionist at the emergency room. How can you have a hospital with NO ONE at the triage desk?? Oh well, they now know who throws fits in order to get care- ME! I think I taught a few parents how to deal witht he educated idiots last night too- I spoke my mind and was busy handing out little PH green cards so the staff knew what PH was. We were blessed with a
physician who actually did know what it is- I quizzed- and she listened to Sean and did what he explained to her as the usual protocal- blood cultures, labs, IV antibiotics, EKG, chest x-ray, and a room. She was young and pretty and she asked him if he wanted to write the orders and notes in his chart too- sincerely- because she was impressed that he/we knew how to deal with this.

Sean has a grumbly tumbly so I am off with Momma foods- tomatoes, turkey, fruit, yohgurt drinks, salad stuff and more. His Nana will be there later today with her little red basket of fruit- that is standard operating procedure for her when Sean is visiting "hotel Kaiser" as he calls it. He already told me what to cook foir supper tonight and how it should be done- gotta love this kid, he took over the kitchen and planned all the week's meals earlier this weekend.

I am blessed with all your love and support- I am beginning to feel like a yoyo between home and hospital-people are beginning to pronounce my name correctly and that is a feat unto itself!

Hope everyone is smiling and enjoying this beautiful day! Thanjks for the prayers and well wishes, please keep them up for the kid, er.. er... young man!

Thanks Again,

Evan

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Hi Everyone,

This is a cumulatie quickie- I am off to the hospital to take food to Sean- he refuses to eat the food there- his direct quote, " MORE PEOPLE DIE BECAUSE OF THAT CRAP THEY CALL 'FOOD' IN THE HOPSITAL..." Yeah he knows how to sucker his mom into getting him the "good stuff" as ususal.

Last night they immediately put him on Zyvox that loverly $1000 a bag IV antibiotic, and hopefully the PICC will be replaced tomorrow, no one can do it over the weekend (and they call this a hospital?). So we're in a holding pattern too, but Sean's spirits are good- that is our best defense towards this insidious dang disease.... Doctors and nurses just look at us and smile, either thinking we're completely daft, or that we're just crazy (yes I know it's the same thing) but laughter and stupidity keep us basically sane. I only had to go after the nurses outside of the emergency room last night- the triage lady and the receptionist at the emergency room. How can you have a hospital with NO ONE at the triage desk?? Oh well, they now know who throws fits in order to get care- ME! I think I taught a few parents how to deal witht he educated idiots last night too- I spoke my mind and was busy handing out little PH green cards so the staff knew what PH was. We were blessed with a
physician who actually did know what it is- I quizzed- and she listened to Sean and did what he explained to her as the usual protocal- blood cultures, labs, IV antibiotics, EKG, chest x-ray, and a room. She was young and pretty and she asked him if he wanted to write the orders and notes in his chart too- sincerely- because she was impressed that he/we knew how to deal with this.

Sean has a grumbly tumbly so I am off with Momma foods- tomatoes, turkey, fruit, yohgurt drinks, salad stuff and more. His Nana will be there later today with her little red basket of fruit- that is standard operating procedure for her when Sean is visiting "hotel Kaiser" as he calls it. He already told me what to cook foir supper tonight and how it should be done- gotta love this kid, he took over the kitchen and planned all the week's meals earlier this weekend.

I am blessed with all your love and support- I am beginning to feel like a yoyo between home and hospital-people are beginning to pronounce my name correctly and that is a feat unto itself!

Hope everyone is smiling and enjoying this beautiful day! Thanjks for the prayers and well wishes, please keep them up for the kid, er.. er... young man!

Thanks Again,

Evan

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Evan and Sean,
Hope it all goes well. Prayers are with you.
Jennifer

Hello Kaye...wow I am happy to hear that Kaylee has started nursery school and is enjoying it.

You don't sound paranoid to me.....I was always around when my daughter went to school.

I also had to be home and when I wasn't going to be they wanted me to carry a cell phone...I never got a cell phone but I did get a pager ...while she was there just in case.

I think that being scared to death until you can trust the staff is normal for us....parents of children with ph.

I am Celeste...my daughter is Noel...she is 20 yrs old and graduated this June. I am super happy all that is over....

my daughter also has severe pph with eisenmenger..and an uncorrected avsd also called an av canal in her case because her septum is a thin piece of membrane with two big holes.....

much love and best wishes for Kaylees continued success at school....

much love celeste

Hi Friends and Family :)

Please put Sean in your prayers, we're off to the emergency room with site pain, pus, redness, and general whoopie, here we go again... Hopefully it is minor, (NEVER IS) but please say a prayer for my son, he is just 9 days shy of his 21st birthday. Man I hate this month... I knew it was going along too well... we even had a yard sale todaya nd raised 200 dollars for his adventure to Las Vegas... woohoo for that. Well gotta pack the drug bags...

I pray you all are well and your children are too!

God Bless,

Evan

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Hello....I just had to write this because I am DYING to tell someone......

A nurse came from associated health care today and while she was here she checked Noels sat rate....its usually like ....69 and sometimes 70...

well today it was 83....whooohoooooooooooooo

must be going up the nano and a half with the remod and Noel wearing her 02 has made some type of a difference....a good difference!

whooooohooooooo....we may be able to go out again and more often....

I am happy for Noel she has lost 5 pounds and also has a much better attitude.....

I am happy today...for a change...

thanks for letting me share some good news for a change...much love celeste

Hello....

We finally got Noel to go up 1 and a half nanograms with her remodulin....and guess what...we went shopping yesterday.....

Noel rode in a w/c.....but that was okay because we were at least out of the house....YIPPEE!!!!

She will probably sleep all day today...LOL

The pharmacist said she had gotten so far down that probably just going up that much would not effect her at all but it did.......maybe now she will try going up a bit more...she is afraid something will happen and thats why she has been reluctant to go up anymore.

She is still having terrible chest pains....but I guess there isn't anything we can do about that right now...

I am just happy that we got to go out together and do something....

Noel is loosing weight.....she looks much better although needs to loose quite a bit she is really trying hard......

much love celeste

This is about my daughter Kaylee and how proud I am of her.
Kaylee is nearly 5 and has a complete AVSD plus other complication
and Pulmonary Hypertension; her heart cannot be repaired, as the PH
is so bad. On her records they say she has very bad PH but to see
her she is almost like any other child.
Kaylee started nursery on Friday (I was very worried). She had been
to playgroup before for a year and it took a good 8 wks before
Kaylee would do a whole session and if I left I would wait in the
car because I was so worried, and they would call me half an hour
later because she would start to get upset. But then she started to
enjoy playgroup and I to started to trust the staff. Kaylee loved
it.
Now she has started nursery and I have to start the trust bit all
over again. I have a 13-year-old healthy girl so I had been there
before, but with Kaylee it was of course different. Our local
schools were not comfortable in having her there, didn't install
the
greatest of confidence in me so I went out of borough but it was
closer to our nearest hospital (just in case) the nursery teacher
there was very matter of fact about Kaylee and said she would be
fine there. So we applied with letters and all sorts and got her in.
Friday- it was her first day I was worried wondering how she would
be, well, I was not allowed to move she held my hand the whole time.
Now I was worse your typical paranoid mother.
Monday - Kaylee's friend started that helped loads I was out of
the
nursery in 20 mins and sat outside in my car until the end at 11.30.
At playtime I worried she wouldn't keep up or sit on sidelines, I
had told the teacher that she quite often chose to stay in and play.
But Kaylee was out there doing almost has well as the others (I kept
peering out of my car window and if I couldn't see her I would
get
out and look over the roof of my car).
Tuesday - Just as good, this time I went to my mums to pick up my
son stayed there until I new it was playtime then we both went back
to nursery he fell asleep and I started my spying. Again she was
fab, still no problems. Kaylee is really enjoying it.
Wednesday - Took my son on his swimming lesson at 9.30, back at
nursery by 10.30.
Thursday - i did leave again but was back early again to watch them
play.
Friday - the same
Am I really paranoid, is it ok to feel like this ??????????
I am really proud of my little girl she has done so well. I'm
sorry
to have gone on and on but you wont be the only one's I'm going
to
post this on the PH parents and kids one to, and let them no how
proud I am of her as well.
Thanks for reading
Kaye

Hi Pam and thank you for sharing the information you had about Tracleer and fatigue.

I am not sure what is up with Noel...but then that is my usual. She has been on tracleer since...3/02

She wasn't doing too well as you probably heard me mention before...then she went through a 24/7 sleeping stage.....then she was really getting nasty...and now we have the silent air concentrator and she has been wearing it steadily for over a week She still seems tired but much much much improved wearing her 02. She seems happier to say the least.....I was literally at tears door and I did shed a few of those, and I didn't know how long that could go on...

One thing I have noticed since she has been wearing the 02 is that her legs are not super hard and cold like they usually are....they are much softer...and her color is better also. I hope she continues to wear it this time because the alternative was just not good at all....

I hope all is well with Becky...much love celeste

Linda and Celeste,

My daughter, Becky, was on Tracleer for about 9 months. She never had any problems with fatigue or sleepiness. She had some dizziness at the beginning of starting to take it, but no other side effects after that.

Hope you are able to find out what is going on soon.

Pam (mom to Becky - 15)

Hello Michelle and thank you for the tip.

I have been wondering about calling Noels card but then what are they going to say. We were there several months ago and he wants Noel to have another sleep study....I think it will be in October...he wanted it right away but then she was ill when it was time for the appointment was so we had to reshedule.

The card also let her try celexa which she only used for three days and her face was much more cyanotic and she was huffing and puffing quite badly...she didn't like it so we d/c'd that. She tried it again...without my knowing....but with the side effects...it was easy to figure out that she was trying it again and so she stopped and I don't think she should try that again and she won't.

Noel has never had heart surgery because she was born with severe pph and eisenmenger complex....she has an uncorrected avsd called av canal by Dr. Barst because she said her septum is just a very thin membrane....bummed me out!

She can't have surgery but her card must know she isn't doing too well right now...but they can't really do anything.

I was really down because even Noels personality was changing so much...now with the silent air concentrator...she is wearing her 02 24/7....still won't go out anywhere...but at least is sounding and looking better ..

I do think something is going on like her pressures may be still going up...I don't know. Her voice has been becoming deeper and raspyier...I think this is also a sign and have asked about it through the years...and although she seems to be through the sleeping 24/7...she still is sleeping more than usual...and even has to take naps...strange for her.

She does not want to go up with the remod at this time due to the side effects....so we travel along on our journey...me hopeful some other drug will come out that she can try and it can make her feel better at least for awhile.

I am still trying to make contact with someone who has a child similar to mine...if you have any ideas....please email me at ....adkriverview4us@........

thanks for thinking of me...much love celeste

Hi Connie:

We lost our granddaughter to Ph two years ago at the age of 34 months. It is a dreadful disease. I can honestly say, I do know what you are going through. Our daughter and son-in law did have a very good support team, but it still did not take away their pain at losing their child. I can't think of anything worse than losing a child, or seeing your child (my daughter) go through so much pain and sorrow. Hold tight to your beautiful children. One can't say much, but you and your children are in our prayers.

Fran

Dear All:
I almost hate to post this message because there has been so much
good news coming out of this group lately. It sounds like so many of
the kids are having great successes with their medication changes and
trips and birthdays. I am very happy for everyone. It's so nice to
hear some good news.
I unfortunately have some bad news. I had Tony down at his
pulmonologist today for his yearly follow-up. Things are not going
well for Tony. His pressures are way up (144) and sats are way down
(in the 60%'s). His pulmonologist and cardiologist have both told me
that the only thing that we're left to is trying to keep him as
comfortable as we can and enjoy the little time that we have left.
I have been terribly down about all of this. It's hard enough being
the parent of a ph kid, unfortunately I don't have a support system
around at all. Being a single mother and having no family around has
been very trying. Your prayers would be so greatly appreciated!
Again, I want to congratulate everyone on their great news!! I am so
happy to see some advancements taking place with this terrible
disease. My thoughts and prayers are always with all of you!
Connie (Mom to Tony, 14, and Samantha, 16)

Rayni Day Miracles is having a fundraiser October 1st and 2nd.

[INLINE]

I hope your birthday turns out to be a great one.....you deserve all the happiness this life can bring...thanks for being there for me when I needed you....it means the world to me.......Happy Birthday Evan!!!...much love celeste

ladyevan's birthday is Thursday!

Hi Everyone,

I wanted you to see what I wrote in response to an "Annie's Mailbox" item in today's newspaper. I guess itis time for me to speak about Sean and PPH. It just poured out.... Read on:

Dear Annie;

I read your coments to Gasping for Air in Louisiana with hope and glimmer of restrospect . My son Had been like the young man who wrote to you. Your advice, "to keep at it," sounded very promising. My son was very similar in abilities in high school. He was very good at low impact things, but PE was his worst nightmare as he could not run the mile or participate in many strenuous activities without becoming short of breath. We coaxed and encouraged him to try harder to succeed, but he could not make that mile. Around the time of his nineteenth birthday he was so short of breat