Home Page

Hi All

Just wondering if any of you have the home testing device and do INR tests on your children from home? We purchased the device from Roche last week, as Tara hates needles. It is a finger stick method similar to what diabetics use.

As Tara has been required to have weekly INR's for the last year it seemed a much better option, although expensive to purchase. We are continuing with lab for a few weeks till we know the device is testing accurately. Yesterday we took it with us to the lab and performed both fingerstick and venous blood draws. Our machine gave us an INR value of 1.9 and the venous draw was 1.8.

Would be interested to hear from anyone doing home testing and their experience.

many thanks and best wishes

chris

mum to Tara

In a message dated 8/28/2003 11:29:42 PM Central Standard Time, abcd.wxzy@... writes:

I am not black and I'm sure that people
with names like Betty, Maggie, Louise, Carol, Kay,
Kathi, and Joanie (I just grabbed a few names of the
recent posters) are not males so I am just curious
about the gender/ethnic makeup of this group.

I am not black either. I am a white female with european background. I've done alot of genealogy research, and had alot passed down to me, and all of my relatives who first came over to America came from places like England, Scotland, Germany, Ireland, etc. This was all from my dad's side, but we believe there is an Italian connection on my mom's side. And, I have some native American (Indian) blood in me as well, probably Cherokee. In my family we have a pretty good mixture of appearances. I am medium skin-toned (I get pale in the winter, but tan easily in the summer) and I have brown hair and greenish-blue eyes. One of my sisters is colored pretty much the same as me, but my other sister is much paler, and has blonde hair and blue eyes. Then, I have two brothers, and they both have dark brown eyes (the girls have lighter green or blue eyes, while the boys ended up with brown eyes). But, one of my brown-eyed brothers has blonde hair and is light skinned, and the
other one has dark brown, pretty much black hair, and he is so dark complected that he looks Indian. We're just quite a mix.

Here's a picture of me with my dad, stepmom and brothers and sisters. I'm the sister in the middle in the front. Those are my two sisters on either side of me (the one is not fat...LOL...she was just 9 months pregnant when this photo was taken). My two brothers are standing in the back. The lighter skinned one is on the far left with his arms crossed. The darker skinned one is second from the right with the black shirt on. They don't even LOOK like brothers! But, they are! I think the darkest skinned brother got more of the Indian blood in him, while the rest of us got more of the European blood. (Oh, and the man and woman in the center in the back is my dad and stepmom, and the other two guys in back...red shirt and blue shirt...are my two stepbrothers.)

[INLINE]

Joanie

Hi, just visited this page at upchucky.com and wanted to share it with you, take a look: http://upchucky.com/flash-cant-smile.html

Reminder Reminder from the Calendar of Sarcoidosis_Support
National Sarcoidosis Awareness Day
Friday August 29, 2003
All Day
This event repeats every year.
Notes:
In 1991 President George Bush issued a proclamation declaring August 29 as National Sarcoidosis Awareness Day

Hello all,

I just felt the need to write about this. My daughter, Becky had two VDSs when she was born, not ASDs. She had surgery at age 2 1/2 to close one of the VSD's. (The other closed on its own prior to surgery.) Due to the second VSD's location, the surgeon was not able to completely close it. Nonetheless she still developed PH. With our doctors, too, I had one cardiologist who said that the PH was primary and not due to her heart defects. I believe that Dr. Ivy (who we see now) takes the position that the PH is secondary to her heart defects. Which to me makes sense since she not only had the two VSD's, she also has dextrocardia (heart on the wrong side, and her heart is flipped around so it faces the wrong direction).

But I guess all I am trying to say is that just because the drs. close holes in a child's heart doesn't guarantee to reverse the PH, or to prevent it from happening. It is certainly worthwhile to have the holes closed and I would still do it, but I would be aware that it may or may not help the PH.

I am not saying this to be discouraging to anyone, but at the time my daughter was diagnosed with PH at age 6, the doctors led me to believe that if her tonsils which were so swollen and needed to be removed, and that if they were removed, that her PH would improve. It did not, in fact it got slightly worse after that.

So I guess I just don't want to see other mothers believing that a particular surgery is going to make PH go away only to be very disappointed. It is always good to hope, but I feel that I was encouraged to hope too much that the PH could go away as a result of a surgery.

Best wishes.

Pam (mom to Becky - 17 - severe PH, congenital heart disease/defects; scoliosis; multiple spleens; reactive airway disease, ADD, etc.; Johnny - 15 - healthy; and Laura - 12 - healthy)

Hi all,
I just registered our phones & our moms' with the FTC Do Not Call Registry. I don't know if there are any of you that want to but haven't, but this is the link. It is really easy to do, is free & is good for five years. It will help stop telemarketers from calling your home. We are currently registered with the OR Atty. Gen.'s office with their no call list, but it has to be renewed annually & costs money--not much but today every bit counts, ya know?
Anyway, here is the link for those of you that want it. http://www.donotcall.gov/default.aspx
God bless,
Mary Ann, OR

Hello, I understand all of your guys, postings. Kaitlyn has to have
her asd open because she is shunting right to left, she also has no
pulmonary value, and man made vsd. She is almost on the same meds, and
is on the same amount of oxygen at home at night. She is on about 8-9
meds a day. Our daughter was just diagnosised in sept of last year,
but they think she has had it since birth. It took 2 open heart
surgerys and 2 caths before they found ph. Good luck, We fight weight
gain and sickness with our daughter.
thanks,
michelle gee

Hi Mitzi,

I have heard of this...I have also heard of them dropping pressures with a drug like flolan and then correcting asd and vsd.

Your daughters ph must be secondary to her heart defect. We had wished this for our daughter but even though she had an avsd or in her case av canal...her ph was primary and this could not be done.

Best of luck and keep us informed. ...I love happy endings..love celeste

Hi, I am at Childrens in Boston with Ava, 14 months. She is starting her treatment for PH and now they are talking about bringing her back in 4 months, closing her ASD (size of a nickel) and hoping that her body would naturally resolve the PH. Any one have a similiar situation? Thanks, Mitzi
Patrice Lozoya <ninasmom25@...

Jennifer,

Corrina had her trach placement and lung biopsy Monday and she did great. She is doing good with exception of the occasional "outburst". She seems angry about the trach and not having her cannula! But she will adjust in time.

We heard back from Houston and it looks like we are going to be flying Corrina there next week for the intial evel for the transplant. It should take a few days, then they well fly her back her to ETCH where she will be discharged to home. After that stay in Houston we should know if she is a candidate, and if so where on the list she may go.

They have done a CPAP trial on her vent today and she tolerated it rather well. They are going to try again here in a bit and if she tolerates that then they will leave her on it. That is a good step! Other wise we are all hanging in there and praying that she will get better, get new lungs and be able to come home.

I hope all is well everyone! Take care and God Bless.

Patrice
Jennifer Nelson <jennifern@mindspring.com

Hello all,
I don't have much time to write now because i am putting in 60-70 hour
weeks, trying to complete all the clinical hours I need to get my
pediatric nurse practitioner. I have to do 30 hours per week until
August to get my clinical hours in and I have to continue to work full
time at Vanderbilt to get my tuition waiver and to get my son's tuition
paid for. But I have no children at home and my husband is pretty
supportive and self sufficient.
Patrice, please keep me advised about what happens with Corrina. I hope
she is able to come home, soon, and everything works out well with
transplant. i know you have been through a lot for her. She is such a
sweet child.
Pam, I hate to hear that Becky is still having issues with pain. That
must be very draining on you and her, both.
Mitzi, welcome to the group. My son, Joey, was diagnosed with primary
pulmonary hypertension (now called idiopathic pulmonary arterial
hypertension) in 2000 at the age of 2. His PH was unfortunately very
severe and he was put immediately on flolan. At the time, he was the
youngest child at Vanderbilt on flolan. Unfortunately, Joey had PH that
was rapidly progressive and died in 2002 at age 4. I can't say that
flolan was a bad experience, because it got him out of the PICU and he
lived a relatively normal life. He adjusted fine to the backpack, went
to sunday school and nursery school (we carried portable radios with us
and remained in the building in case of emergency) and he never got a
line infection, although we once had to be admitted for fever to rule
out an infection. I am also a pediatric nurse that works at Vanderbilt,
and I had been a pediatric nurse many years prior to his diagnosis.
(People frequently ask if I got into nursing because of my experience,
but I was a peds nurse for ten years prior to his birth.) Flolan is a
lot of work for the family, but in our view it was worth it.
Joey was our baby. We also have two older children who are now 19 and
23.
I think you will find a lot of support in this group and it is a good
place to go to for advice. Once you have been the parent of a child
with a chronic condition, it is hard to find others who can relate to
what you are going through, and that is why it is good that we have
each other.
Jennifer

Betty, I'm not sure how to add it into the links section. Can you direct me and I'll add it. I agree, that the photos make my little hives look like nothing is going on.
"Betty A. Thomas" <bbutterfly@...

Hi again Louise. My skin lesions are nothing in comparison. I'm not sure about my lungs as my xrays didn't look very good. Why don't you put this link in the links section on our homepage. Thanks for posting it.

Betty
bbutterfly@...

Like photographs of flowers, trees, outdoor scenes, birds and animals?

Thanks Melissa,

I really enjoyed the verse, brightened my day.

best wishes

chris

mum to Tara

[INLINE]
[INLINE]

Sometimes we wonder, "What did I do to deserve this?" or "Why did God have to do this to me?" Here is a wonderful explanation! A daughter is telling her Mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, "Absolutely Mom, I love your cake."
"Here, have some cooking oil," her Mother offers. "Yuck" says her daughter.
"How about a couple raw eggs?" "Gross, Mom!"
"Would you like some flour then? Or maybe baking soda?" "Mom, those are all yucky!"
To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!
God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!
God is crazy about you. He sends you flowers every spring and a sunrise every morning.
Whenever you want to talk, He'll listen. He can live anywhere in the universe, and He chose your heart.
If you like this, send this on to the people you really care about. I did.
Life may not be the party we hoped for, but while we are here we might as well dance.
[INLINE]

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

www.carepages.com
Carepage Name: baileybrewer

Hi Maggie,

I'm not a nurse, but I have read that fish oils have been found to help inflammation. I do believe there are numerous books about what foods and drinks "might" add to inflammation (I've heard sugar is one), and what foods and nutrients help reduce inflammation. But again, there are books for everything.

I did read a great book recently called The Swarchbein Principle - I have a feeling i spelt that wrong. The author is a endocrinologist who has been working with Diabetes patients. She found that the low fat, high carb Diabetes diet they were on was causing their blood sugars to raise (a bowl of cereal, glass of orange juice and toast with jam all have sugars), and when they started eating eggs and meats with one slice of toast their blood sugars were normal. I believe our govt. is researching this as I write. It's worth reading, of course, talk to your dr.

Louise
maggie <mageez@...

hi don
wish i'd had updates over the years. i'm new to this area and
this doctor. was having a yearly check, pap test, colon, mammogram
etc and going over my medical history. mentioned sarc and she wanted
to see my baseline data. (which i don't have. don't even remember the
dr's name.) then my blood work came back with too high liver enzymes
and it's been non stop tests and specialists from there.
but i've learned she is a thorough doctor. and if this new
pulmonary specialists can't figure things out she told me the next
step was the university of washington.
sometimes not knowing your limitations is a good thing. (g) i
can't imagine carrying a 2 year old down the driveway.
there are actual nurses on this list? good. all i know about
this disease is what i've read on the net. and experienced first
hand. but like the facial rash, i never connected that to sacr.
was told by an inhalation therapist that there is a vitamin
supplement called 'pharmaceutical grade fish oil' that opens up
tissues to enable them to absorb more oxygen. he said he wasn't
allowed to recommend anything so couldn't tell me any more but that
if i looked for it i could find it. i intend to look.
has anyone heard or tried this stuff?
/|
maggie & ____/ |
lucky chance ____/o^ |\
at warp works studio \------/\ \
\______ | |
mageez@... \ \
|
I believe that friends are quiet angels who lift us to our feet when
our wings have trouble remembering how to fly.
author unknown
To unsubscribe from this group, send an email to:

This is funny!!!! LOL!!! I can see those suckers tryin' to fly away now and explodin' in mid-air. heehee!

Ray (& Liz)

====================================================

Dear Mitzi,

Hi my name is Evan and my son, Sean has PPH. He is 23 now, but was diagnosed 4 years ago (wow, long time) and he has been on Flolan since his diagnosis. He is now trying to get off of Flolan and onto another vasodilator so he can swim and be "normal" in comparison to his peers. He thinks the pack he carries (the pump) make him stand out and look different from others so that is why he wants off the medication, but it has saved his life in my opinion. He was class IV when diagnosed and immediately put on the list for heart/lung transplant. Well I am here to say, 4 years later, his health has so improved withthe drug that he is no longer on the transplant list, and he is back in school and getting the things done he missed out on for 2 years.

Life with the pump can be a pain, a truly ROYAL pain, but the benefits have far out scored the costs of the pump, mixing medications, infections and the whole gamut of things that can go wrong. Yes he has had numerous line infections, he has a PICC line now and it seems to get infected every 6 months and a week long hospital stay is a part of our life, but when I look at the altenative, of not having this medication in him I think he understands the need for it. I cannot say how it would be having a little one like you have with the pump, as Sean mixes his own meds now and we all know how- but he does it the majority of the time. I know another mother here had a son with PPH and he was on Flolan and it was a good experience I believe, but I cannot speak for Jennifer. She is a wealth of information when it comes to life with PH, and she has put her two cents in too I think.

Sean is an adult now with PH, but he is still my son, so I am here on this list, he lives at home too- so I keep abreast of the going ons here and if I can help anyone I try to do just that. I cannot say how life will differ for you, but I know mixing meds isn't as bad as you think it can be. And if you have a schedule it makes it that much easier. When the whole family is involved it seems to take some of the stress off of just having one person in the house responsible. I know how it feels to be a mom and trying to help and control all of the aspects of a child with a chronic illness like PH, but sometimes we just have to let go and tell others in the house to help, or else you find you have a very short fuse for living and it gets really hard trying to do everything.

We have our ups and downs in our lives like everyone else and now PH has made itself a part of our daily lifestyle. It is manageable for sure, but there are moments when I think without the people here I would certainly lose my brain. I often wonder and think of what life would be like if Sean were much younger, and I just am grateful I have this road to walk when he is this age. Many parents here have children with complicated medical conditions so I feel blessed in a way that PH is all we have to deal with in our lives, because it in itself is huge.

I hope you find success with Flolan and also know that there are several medications in the clinical stages of being approved for use for treating pulmonary hypertension.

I hope this made sense, this email, just don't lose faith and do what you can to help your daughter. It all works out in the long run.

God Bless You and yours,

Evan White

Hugs and Hope,
Evan White (pronounced Eve-anne)
Mom to Sean, now 23! DX 10/18/02, IPAH
Flolan, Tracleer, plus many more
Peace to everyone who reads these words
Help find a cure to this silent killer!
It is as hard to see one's self as to look backwards without turning around. - Thoreau

On Wed, 27 Aug 2003 18:33:21 -0700 maggie <mageez@...
<<<<<<<<<<<<<<<snip
You have me beat - I was diagnosed 28 years ago. At that
time I had a routine chest x-ray that showed a problem -
the one take 10 years prior to that was clear. I had no
symptoms at that time. I left on vacation and one of the
things I did on vacation was carry our 2 year old
up a mountain to tour Tipanogas (sp?) in the Wasach
range just outside of Salt Lake City. I had no problems
at all even in the high altitude there.
<<<<<<<<<<<<<<<snip
COPD stands for Chronic O????? Pulmonary Disease.
I think it is kind of a generic term for serious lung problems
of various origins. Nurses ??????
Don Elias

Congratulations, PH Community!

Thanks to all of your e-mails, letters, calls, and visits to Members of Congress about the PH Research Act over the past years, the National Heart Lung and Blood Institute has agreed to fund pulmonary hypertension research centers at John Hopkins University in Baltimore and the University of Colorado in Denver.

These Specialized Centers for Clinically Oriented Research (SCCOR) are similar to the "Centers of Excellence" called for in the PH Research Act. Their creation is a direct result of the support YOU generated for the Research Act.

This is a tremendous success!

Each center will pursue multiple PH research projects, and the funding they receive will total in the millions of dollars. That's millions of new dollars aimed at finding new and better treatments for PH and moving us closer to a cure!

The funding of the SCCOR Centers is a victory worth celebrating...click the link below for a special message from the PHA staff.

http://www.care2.com/ecards/p/9023-3999-10447-1725

Best,

Katie

Katherine Kroner

Associate Director of Advocacy and Awareness

Pulmonary Hypertension Association

Katherine@PHAssociation.org

301-565-3004 X109

hi all
first i want to welcome the other new comers to this group.
and assure you that you can live with this disease. i was diagnosed
35 years ago. am having a few issues now but so far they haven't been
overwhelming.
saw my pulmonary dr today. she doesn't think it's time for
oxygen yet even thou my lungs only supply 50% of what my body needs.
she feels my body has adapted very well to low levels of oxygen. and
i know physically what i can do and cannot do.
but . . . in the cat scan there are spider web like lines
along with all the scars. and of course we don't know if those are
new or if i've always had them. so i'm scheduled for more test. she
thinks there is a possibility of asthma complicating the problem.
and hopefully my insurance will cover treatment at a therapy
center. they have had success at increasing exercise capacity and
teaching people techniques to control shortness of breath. this is
for people with COPD (whatever that is), asthma, emphysema, and more
of the same. sarc isn't listed but the problems are the same.
still have the ultra sound of my liver to get thru. the cat
scan didn't show any thing new.
anyway - emotionally i'm feeling a whole lot better.
physically i've not ever felt sick.
thank you all for being here and listening to me.
hugs to you all.
/|
maggie & ____/ |
lucky chance ____/o^ |\
at warp works studio \------/\ \
\______ | |
mageez@... \ \
|
I believe that friends are quiet angels who lift us to our feet when
our wings have trouble remembering how to fly.
author unknown

Hi again,

I'm on a skin lesion kick. I just found this website: http://tray.dermatology.uiowa.edu/DermImag.htm

which has photos of every skin lesion under the sun. What is interesting it is list Erythema nodosum separate from Sarcoidosis. I believe Erythema nodosum is a symptom in other illness as well. Can a nurse confirm that? The photo is really good though, shows it more like how I've had it.

They even show the lovely Impetigo I had. I'm not advocating diagnosing your skin lesion (hey that sounds like a game show), but it certainly helps us get a better idea of what others on the list are suffering with.

Hi Celeste

Thank you for sharing the photo of Noel's headstone. It is indeed lovely with the double hearts. I haven't seen any similar here in Australia.

I have been thinking of posting and asking whether other parents actually semi-plan their child's buriel?? It is very scarey and unthinkable for me. Feel like if I think about it, it might happen. Just with Tara's latest problems and Drs saying they don't know how if the treatment plan will work....Like a nightmare to think about.

If you don't mind me asking, did you have a definite plan for Noel? Did you decide how the service would be, and what would be said etc. at her service? Is it better to have some ideas written down and planned ? I am very sorry if these questions are upsetting and you can ignore if you choose, I will understand.

Love and best wishes

chris

mum to Tara

Hi,

This is a site that has some photos of typical Sarcoidosis skin lesions. Though, the one for Erythema nodosum looks really bad. I've never had it look like that. For me, they look like small, pink hives, smaller than a dime. But I know there are a lot of us that have different sking lesions and thought this might be helpful. Hope so.

http://www.meddean.luc.edu/lumen/MedEd/Radio/sarc/skinclin.htm

I would like to invite you to join my circle of friends. Check my circle of
friends here:
http://profile.bestbikerclub.com/friend.htm

Hi Don,

I'm not a nurse, but I've been on steroids for 26 years. When I was a child I went to Stanford Children's Hospital in California every week for 5 years to have an I.V. of Solu-medrol, and I never developed Diabetes. Though we always check, and believe me, it is a huge concern. I am not sure why it hasn't happened to me. I have, however, had other side effects from Steroids: catacteract from taking steroid eye drops, osteoporosis, and ...oh, that is it. The cataract was easily remedied. Infact, there are still days when I drive around without sunglasses and feel a huge sense of joy, just from that. And we're treating the Osteoporosis. I occassionaly have stress fractures, but nothing serious. Though I hate prednisone/steroids and am so excited for the day when research yields new medication, it has saved my life and my sight many times. It never seems to cure us, just helps us deal with the pain for a while. I do think there are other options though.

Hope this infor helps.

Louise

Carol Franklin <hmschlmom4cass@...

Don:

What you're talking about is called steroid induced diabetes. It usually affects those of us on long term steroid therapy or high dose therapy (usually through the IV route, when someone is in an asthma crisis and receive a drug known as "solu-medrol" which is HIGH doses of steroid, directly into the blood system). It also tends to affect those of us who are packing on a few pounds (which is also aggrevated by the steroid) and those who are prone to the Type II diabetes to begin with.

I had gestational diabetes while carrying my baby. I then had no problems for about 4 years after her birth. Then it hit (the Type II diabetes) and I started on oral medication (which is the first step they will do with you, if diet and exercise doesn't do the trick). There are many oral meds out there, and they are very good. Then, of course, if that doesn't do the trick, insulin will be tried, usually in combination with oral meds, to hopefull cut back on the amount of insulin you would need to take.

I deal with diabetes (as I've already said), my little 7 year old has just been diagnosed with Type I diabetes (her pancreas doesn't produce insulin, it has nothing to do with diet, lack of exercise, being overweight....it has to do with a bum rap on her pancreas). I also am a Diabetic Educator for in-patients at our local community hospital.

If you have any further questions, or more pointed questions, ask away. I'd be happy to answer them for you.

By the way, did your doc do a HA1C test? If yes, what was the result?

Carol (RN)

Mitzi~

How did Ava's visit with the specialist go? I see that she will be starting Flolan next week? I know you are probably nervous about that... One person that you could check with is Ryan's mom, Tracy... she is on the PHA message boards and she is helpful on all angles with this disease. I really trust and look to her for lots of advice. There are a couple other parents on there with children on Flolan. Has Ava had a heart cath? If so, what are her pressures? I am just wondering since she seems to have no symptoms as to why they are jumping to Flolan so quickly. Bailey has major symptoms and her pressure was equal to her body pressure when she was diagnosed and Dr. Berman (her specialist in NY) seems to think that the oral meds are doing great with Bailey. Has Ava responded to the Revatio? What else is she taking?

Okay, all of this seems a bit nosy. I am just curious!

Take care and please send me an update!

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

www.carepages.com
Carepage Name: baileybrewer

Hi, Ava will be starting on Flolan next week....I am hoping to meet some parents who have children on this medication. Ava is 14 months old with PPH. Thanks, Mitzi
Melissa Brewer <brewerbus@...

Okay, after I send this I will get you set up to see Bailey's page. I am sure you understand the need for security on the Internet. But, I will be happy to share Bailey with you!

The weather here is so crazy right now. One day it will be almost 70 and the next, there will be freezing rain. It really doesn't help with colds/viruses going around. In the past month, the flu (Types A & B), pneumonia and a stomach flu have been going around. Luckily, Bailey has caught none of these... let's just hope and pray that she continues to do well.

I hope that things are going well with you and Sean?

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

www.carepages.com
Carepage Name: baileybrewer

Hi Don-

I have a lot of prblems with kidney stones myself...........which began occuring after I started taking prednisone. Doctors told me that was most likely the culprit. I pass so many I'm thinkin' of startin' my own Mt. Rushmore. Smiley emoticon

If I'm not mistakened I believe Betty told us that her diabetis came from the pred also. Am I right, Betty? I've found the pred to be a blessing and a curse.

I was on 40 mg of pred for about 9 years and it helped in the beginning tremendously, but in the end it began to cause the stones and affect my eyes somewhat as well as other problems. They then lowered me to 5 mg and I began losing the 83 lbs I had put on in those 9 years and got back down ALMOST to 200. But since having trouble with my lungs they raised it back up to 20 which I've been on for months and months now and gained 30 lbs back. However, the docs are going to try me on the methotreoxate (the medicine that has helped Betty so much), that is if my tests come back okay on my liver. They've been weening me off the pred each week.
I'll be down to 5 again next week. (Just now thought about it, but that may be one of the reasons I've been sorta week lately also).

We will keep you in our prayers, Don, and hope things come out good from your tests. Keep us informed.

Ray & Liz

===================================================

Hi Sooey-

I too had been told for months upon months I had cancer, when first diagnosed. Then came the verdict : sarcoidosis. Give me the sarc anyday!

Sounds like you've been put thru the ringer also. Many of us have been. Looks like there would be a more simplified way (test or something) they could run to find out if you have sarc. I've had biopsies after biopsies, xrays (had over 300 in one year - I was worried that if I didn't have cancer, I would after they finished with me).

But regardless, I feel blessed that I found this site and the wonderful people on her, and you'll feel that way also. We're all here for you anytime you need us with questions, with love, with prayers, and with open ears just to listen. We even have medical nurses that can answer some of the questions we have and will keep us in line if we start thinkin' we know more than the doctor. Believe me that's a blessing!!!!

So, Sooey, let me welcome you to the family, and like I said anytime you need us..................we'll be here for you!!!

Red heart emoticon , Ray & Liz

=====================================================

Hello there Celeste,

I was wondering if you got my email?

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

www.carepages.com
Carepage Name: baileybrewer

I hope this isn't too upsetting but I thought some of you may like to see a picture of Noels headstone.

For those of you who did not know us......Noel was 22 years and passed aug. 4th., 2006. She was born with severe primary pulmonary hypertension, eisenmenger, an uncorrectable av canal or avsd, down syndrome and other physical problems....the thing that made Noel very awesome is that she didn't have much of the learning disabilities and no problems with speech or anything like that....she was amazing and much outlived the docs 2 to 3 years...prediction. love celeste

[INLINE]

Hi Sarcoid Group....

I have a lot of emails to read through and want to try to respond to them, but so far I've been reading about newly diagnosed sarcoidosis patients' fear of starting Prednisone. And although i don't like the stuff, I thought I'd add a bit of humor-

10 Great Things about Prednisone (at least from my experience)

1. Food NEVER tasted so good (and normally I'm a picky eater, food seems boring)

2. Food NEVER looked so good (again, everything looks yummy)

3. Other people's left-overs never looked and tasted so good!!!!

4. My complexion never looked better

5. I have a nice layer of blubber to keep me warm in the winter!

6. I have never had so much energy! I was like the energizer bunny, going and going and going....(normally, my favorite past time is sleeping)

7. I really told people what I thought (and then some!)

8. Absolutely no joint pain!

9. Absolutely no congestion, sinus or allergy pain

and the best thing about Prednisone is......

10. I never get mosquito bites!

Hi Chris,
I think a respiratory specialist is just another name for what we call
pulmonologist.
I have been thinking about Tara and I am not sure why they consider her
vascular ring inoperable. I think I would want more information and a
second opinion. I am not sure how things work over there. At our
hospital the cardiologists, the interventionalists (the cath lab team
that place stents) and the cardiac surgeons get together weekly to
discuss cases and decide the best approach to individual cases Perhaps
it is similar to your cardio review, I don't know.
A CF child would not be contagious to a normal child. But I think if
Tara were my child I would not want her sharing a room with a CF
patient. Both the CF child and Tara have problems with chronic
infection and clearing mucous, for different reasons. There are some
peculiar germs that CF children are more prone to than children without
CF, for reasons no one understands. These particular bugs would cause
more threat to another CF child than to Tara. But I don't think I would
want Tara sharing a room with a CF child because any bug she is likely
to pick up from a CF child is more likely to be antibiotic resistant.
But that is just a personal opinion.
I can understand germ phobia. When Joey's condition worsened the
doctors warned us that any fever could possibly kill him. But you can't
lock your child up in a bubble. Somewhere, they have to be kids. So we
let Joey go to nursery school and the church nursery. Kids still have
to have a life that is worth living, and somewhere you have to balance
that.
I have not had a day off in over a week, because I am having to do 30
hours per week clinicals for my nurse practitioner degree, on top of my
regular job. Somehow, I will have to keep this up until August. So I
may not be online writing as much, but please let me know the results
of the cardio review and keep us posted.
Jennifer

Hi you two,

Just wanted to tell you that you'll be in my prayers on Friday. I'm hoping for "flexible" good news. Which means there is more than one alternative to a possible sarcoid flare up.

Love ya

Louise
Raeford Thompson <snowblindoutlaw@...

Please keep us informed this Friday, Betty, after you have your CT scan. Hope they can figure out what's going haywire with your ACE level.
I go for my Echocardigram on Friday also, and will let you know how that goes this weekend.

You know you're in our prayers.

Ray (& Liz)

=======================================================

Kathi, what a lovely email. I also keep everyone in my prayers. Your email
must make the new members feel so welcome. I'm not on MSN but for those
that are you might want to tell us if 10 pm is Pacific time or what?
Hugs,
Betty
bbutterfly@...
Like photographs of flowers, trees, outdoor scenes, birds and animals?
Join OutdoorPhotos email group at

Hi Jennifer

thanks for your advice, I have decided to wait until the cardio review in 6 weeks before I look into a second opinion. Conditioned upon Tara remaining well during that time of course.

I don't think we have pulmonologists here, they all seemed to be called respiratory specialists???maybe the same thing???There is a team of four or more at the major kids hospital and they all confer on the best treatment. When in hospital whatever one is on call sees your child, and they have a weekly ward round altogether with their registrars. They also treat the CF kids.

I met the mum of a CF boy sharing Tara's room, he was coughing bad and as I am now GERM phobic, I asked the nurse if he was contagious!!! Apparently there were five CF kids in the ward and they cannot be put in the same room together. I wonder if Tara should be classified the same??? Her infection is Heamopholous (spelling?), not one of the nasty bugs Drs said. But still I DON'T want her exposed to anything else. I am very focused on minimising contact with any resp. germs. Even tho I don't know the names of many of the nasties....see what I mean about panic and phobia, maybe even call me paranoid. Whatever am I going to do to control my thoughts and fears to function normally every day.

thanks again and best wishes

chris

mum to Tara

Hi Jamie,

Welcome to our group! I have a daughter, Becky, age 17 who has severe pulmonary hypertension, numerous congenital heart defects (had two holes in her heart prior to heart surgery), multiple spleens, and scoliosis. We live in Houston, TX. She sees Dr. Dunbar Ivy in Denver, CO who is one of the best PH pediatric specialists in the country. There is also Dr. Robin Barst who is in New York City. I hear that she is extremely busy, but you might try getting in to see her. She is very good.

Other than that, if you go to the PHA website, they have a page that lists PH specialists by state. You might also try finding one that way. If you find one near to you you might post to this list as well as to the regular message board for PH patients to see if anyone has ever used that specialist and what they thought.

Best wishes. I am sorry that your daughter has PH, but this is a wonderful group, as you will soon see.

Pam (mom to Becky - 17, Johnny - 15, and Laura - 11)
Jamie Davis Smith <jdsmith@...

Hi,
My six-month old was recently been diagnosed with pulmonary hypertension. I'm so glad to have found this group to connect with other parents. My daughter had a PDA (hole in her heart) closed last week and we were hoping that after her surgery her PH would disappear, but it hasn't. My daughter also has a yet-undiagnosed genetic disorder and her PH is probably somehow connected with that, but since we don't yet have a genetic diagnosis we're not sure how.I'm hoping someone on the list knows of fantastic specialists. We're in Washington, DC but are willing to travel.
Thanks!
Jamie

Hi Betty!
Thank you so much for your kind welcome. I am very happy to have
found all of you. This Sarcoid stuff is so new to me, it's a lot to
get your mind around. I've always been healthy, fat and happy. Now,
to learn that I have a yuckie 'thing' going on in my chest, I feel
like some of the wind has been taken out of my sails...no pun
intended. I wonder just how long I have had this stuff. I'm now 53
and can think back to times, years ago, when I had no breathing issues
at all, allergies, yes, but clairitin always took care of them and my
wheezing. I now feel that sarcoid has been creeping up on me for
several years. I guess we need to concentrate on moving forward from
here.
Thank you again for the welcome and thank you for starting this group.
I can tell that it is a big help to many people.
Sooey

Hi Joanie,
Thanks for responding to my post. It sounds like we are in the same
sarc boat. I am going for a second opinion re: 'to treat or not to
treat' my sarc. My appt. is on September 15th. Now I don't know what
to hope for. I really don't want the steroids but as I said in my
post, I have lost so much healthy lung tissue and would like to keep
what I have left. The PT-scan I had, showed that I have major scaring
with many, many large locations of the granulomas (sp). The surgeon
said that looking at all my x-rays, scans and test results, seeing all
the damage in both of my lungs and then looking at me, it was as if he
was looking at two different people. They have not told me what stage
I am in but I know it's in my lungs, lymph nodes and treachia...stage
2?...2.5?
The pulmonologist gave me two inhailers, Advair and Albuterol. I have
not started them yet but after reading about your success with the
Advair, I will start tomorrow. I've had inhailers before, provental
and albuterol, never really used them much, never thought I really
needed them. I guess now I need to rethink it all.
I don't know all the fine points of my PFT results, but my GP told me
that I was able to exhale 57%. After the inhailation treatment, I
went up only about 10%. Better than nothing I guess. I don't get
much shortness of breath, only when I get up and run around or run up
a few flights of stairs. Just regular stuff is fine.
Sounds like we will have matching scars on our necks. I really hate
the thought of that but we seem to think the same way...seeing it will
always remind me that I don't have cancer.
Thanks again for your response. It's good to know there are others
out there with this same odd illness. It helps.
Sooey

Hi,
My six-month old was recently been diagnosed with pulmonary hypertension. I'm
so glad to have found this group to connect with other parents. My daughter had
a PDA (hole in her heart) closed last week and we were hoping that after her
surgery her PH would disappear, but it hasn't. My daughter also has a
yet-undiagnosed genetic disorder and her PH is probably somehow connected with
that, but since we don't yet have a genetic diagnosis we're not sure how.I'm
hoping someone on the list knows of fantastic specialists. We're in
Washington, DC but are willing to travel.
Thanks!
Jamie

Just wanted to say hello to everyone, and a special "hi" to all the
newbies. WELCOME. It's a pleasure to meet each and everyone of
you. Everyone is in my prayers and I hope each of you get through
your challenge. One day at a time is the best we can do some days.
I would like to invite anyone who can come to a chat on Thurs. Aug.
28th 10pm on MSN: (sarcoidconnection) it's a one year celebration,
and we would love you to come with your questions and input. Take
care everyone and God Bless you all.

Pam,

Sorry to hear that Becky is in the hospital. I hope that all goes well.

blessings,

JanW

Hello all,

Well, I guess it is our turn to be in the hospital. Becky was put in Texas Childrens Hospital Tuesday night with a low heart rate - in the 40's, and chest pain and pressure on the right side (which is the side her heart is on since she has dextrocardia). As of Thursday and lots of tests, the cardiologists had done some research and found out that the Sotalol Becky takes to control some heart arrhythmias and high heart rate has a tendence in kids with PH over time to lower their heart rate too far, which then causes the chest pain and pressure. So they reduced her dosage by half. That was a little scary since she was already on a low dose of it because she initially had a hard time tolerating the side effects. So now the question is whether it will bring her heart rate up and eliminate the chest pain without causing the arrhythmias and high heart rate to come back.

As of yesterday afternoon, it seemed to be doing o.k. Her heart rate was back up to in the 60's, and the chest pain seemed to have gone away. They are continuing to monitor her heart rate, rhythm etc. with the telemetry they have on the cardiac floor so I guess they'll find out if she is having any problems with arrhythmias as a result of the lowered dose of medicine.

I am hoping that she will be home by at least Monday.

Pam

Chris,
I was really disheartened to hear that Tara's obstruction was
inoperable, but at least you have an explanation of why Tara keeps
respiratory infections, and you know it is not something anyone did
wrong.
I don't see anything wrong with getting a second opinion. Our
cardiologist arranged for someone from Dr. Barst's team in New York to
read over our son's records and give us a second opinion. It did help
bring me some peace of mind. Our cardiologist arranged for the second
opinion himself. A lot of people falsely believe that a doctor will be
offended of you ask for a second opinion, but our cardiologist was
willing to try anything that might help.
Joey was put on tracleer after Dr. Barst's team gave us their second
opinion. Tracleer was a good drug for him. There is, I think, not a
good way of predicting who will respond well to various PH drugs.
Tracleer and viagra act on different pathways. I think tracleer would
be worth trying. Tara would get a double benefit from anything that
might reduce her pressures, because it will make it easier to clear
mucus, due to less pressure on the vascular obstruction. The only side
effect that know of to tracleer is the possibility of liver damage, so
it does require monthly checks for liver damage, which is done by
drawing blood to check for liver enzymes. The liver damage is
reversible if you stop the drug, so I don't see that you have a lot to
lose by trying. but there is no way in advance to predict who will get
good results from it.
My other advice would be to have a pediatric pulmonologist follow
her, but it sounds like she already has a good lung doctor. The fact
that Tara has chronic infection in her lungs may not be as dismal as it
sounds. Cystic fibrosis is a common pediatric condition where children
get repeated lung infections because they have abnormally thick mucus.
Many of them have infections that never totally clear, yet they can
lead productive lives, so I think there is a lot of hope there. Most
pediatric lung doctors have a lot of experience treating children who
are chronically infected because cystic fibrosis is a common condition,
much more common than PH. Although Tara does not have cystic fibrosis,
you might want to see if there is a support group for parents of
children with this condition in your area. You might able to meet some
parents who have experienced some similar issues. But we do not
encourage the patients with cystic fibrosis to together because they
can pass antibiotic resistant infections back and forth. Many of them
have to spend time on i.v. antibiotics as they grow older.
My guess is it would be hard to predict how Tara will do. She does
sound like kind of an unusual case, having both the PH and the vascular
obstructive issues. I guess you have to hope for the best and prepare
for the worst.
I can relate to you being discouraged, though. Don't give up hope.
Here's a great big cyber hug for you. Give one to Tara as well.
Jennifer

Please keep us informed this Friday, Betty, after you have your CT scan. Hope they can figure out what's going haywire with your ACE level.
I go for my Echocardigram on Friday also, and will let you know how that goes this weekend.

You know you're in our prayers.

Ray (& Liz)

=======================================================

Hi Barb-

Been a good while..............I've still got you and Jacob on our prayer list. He's gone thru so much in his little life, hasn't he?

Appreciate all the info on the cannister tanks and Oxygen. I had sent Mary Ann a letter earlier on the sarc site on what the doctor said. Hope you got to read it. He's thinking I get the headaches and bloody nose from too much oxygen during the night, when I'm inactive.
I'm using the O more. The only time now I'm not is when I take Liz to work in the mornings, and he said that was fine as long as I wasn't having trouble breathing or heart beating fast.

I just prayed here at the computer again for Jacob. My heart goes out to him so much. We love you both and keep you in our hearts.

Ray (& Liz)

=======================================================

Dear Donna,

Love your sense of humor, Dustin. You got the key to not lettin' this stuff destroy us..................!

You get me to laughin' everytime I read an email from you. Makes my day.

Ray (& Liz)

=========================================================

I'm not a parent of PH. I'm a patient of PH. I'm new to a computer and
signed up for the wrong group. If you can help me find the correct group
please feel free to do so. I'm really slow at typing too. HELP.....Donna

Hello All

Tara and I got home at last, altho the two weeks really flew quick. It helped pass quick having the other kids and grandma there for 10 days. Tara was allowed to come and go from the hospital a lot and her IV antibiotics were only once daily. I had a good talk with Tara's resp. Dr and because the obstruction is inoperable, she told me honestly they don't know what the future outlook will be for Tara. It is a vicous circle where her heart and PA pressure will impact on the obstruction. If her pressure can reduce the obstruction will decrease and vice versa if her pressure increases. It is very dependent on the PH drugs doing their job and keeping the heart functioning well and the pressure down. Also the lung infection being kept at a minimum.

The lung infection will never clear up because the mucous cannot clear due to obstruction, and infection will grow because of mucous. They hope to keep the infection at a managable level with two weeks IV antibiotics every 3 months and daily physio at home. I'm already in a panic about school and all the colds and flus being transmitted in the class. School year resumes next week after a seven week summer break here. My head is reeling and I think I need anti d's or anti anxiety meds, going to visit Dr. soon. Feels like we have entered a whole new ball game where the rules and risks are now tougher.

Jennifer if you read this I would appreciate your input from a medical point about the diagnosis and care plan the Drs here have given. I am thinking of sending MRI report and medical history to another big childrens hospital here in Australia for 2nd opinion. The Drs are deciding whether they will put Tara on Tracleer or not?? She only takes viagra for PH at the moment. The Dr pointed out it is $4000 a month (our government pays, not the patient) I think only one DR can prescribe and he has to apply to Govt and patient has to meet certain criteria, which Tara does.

I do think that the latest treatment and physio has helped Tara a lot. She is more exercise tolerant and seems happier and more self confident. That makes me feel positive, altho that scarey negative voice creeps into my thoughts constantly. She will have her cardio. checkup and echo in 6 weeks, so feeling a tiny bit confident that the pressure may have reduced.

Hope life is good, and easy sailing for you all. I haven't caught up reading all the posts for the last couple of weeks yet, try to over the weekend.

best wishes

chris

mum to Tara

Hey Melissa,

WOW!! The dream you had is amazing. I would feel the same. Actually, kind of weird I thought at the time, I did feel that way. Last week I had a dream that Corrina came off the vent and rolled over to look me, then the next thing I knew she was standing next to her dad playing with him!!! I so totally understand what you mean.

Corrina is still on the oscillator, but things are looking better today than the other day. They flipped her from her back to her stomach. She likes that and there was an immediate response. She has been satting 100% and they have been able to turn her O2 flow down from 92% to 55% last I checked. The doc said once we get her to 50% percent and she tolerates it then we will start weaning off the oscillator ever so slowly as she tolerates. I think this is great and very hopeful that she will pull this and will come off the vent. Although the doctors have informed us that we need to be prepared for the fact that she may require being on a home vent. Her little lungs are so sick and there is damaged tissue. They are also concerned that the most recent pneumonia may have damaged her lungs even more. It will only be a matter of time.

Thank you for all your prayers and support. I also continue to pray for you and your family. May God bless you all.

Patrice
Melissa Brewer <brewerbus@...

Hello there Patrice.... thank you so much for asking about my girls, you are such a thoughtful person!

As for the pictures, this is your official invitation to Bailey's carepage... (not that you needed an official invitation... maybe I should just say a personal invitation! ~ I don't know why I haven't invited you before!) Her carepage has so many pictures, not to mention information on what's going on with her (and us too!).... go to www.carepages.com and her carepage name is baileybrewer. Let me know if you have any problems acccessing her page and we will see what we can do!

You cannot imagine how often I think about you.... I simply cannot imagine all the emotions you have gone through... I see you as such a strong mom full of wisdom and inspiration. I want to apologize for not checking in with you over the past few months. I have been so busy with all the craziness of our lives that I have let things slip. (I should stop making excuses and do the things I should be doing!) I don't get to post as often, here or on the PHA website. I feel like I am letting my "mission" of spreading the word about PH slip... something I feel that I should be doing... BUT, I started a new job in October that supplies us, as a family with so much more... additional income, much better and cheaper insurance, a more secure future... I could go on with the benefits of this job but I could also mention some of the drawbacks.... The main being that I don't have the freedom that I once had with doing things that I once did.... So, I had to weigh the issues and guess what
won! I will say this... my mother-in-law cares for the girls while I am work and if it weren't for that, I would be at home definitely! She actually retired (after 30+ years) with the same company that I am working for now! (Ingersoll Rand Company, not sure if you have heard of them!) I depend on her greatly and she is such a wonderful person.... and, my husband is in a position at his job where he can be off as needed for the simple dr. visits and whatnot. It's all working out so far except the wants of me.... with the PH awareness... I will do what I can!

Okay, on to something else, you being such a wise mom that I look up to for inspiration and insight... I had a dream last night. And, it was so weird.... when I was driving to meet a friend for lunch earlier today, it hit me that I had dreamed this dream last night (does that sound weird?).... I dreamed that Bailey went to the doctor (not sure which one) and I got the reports back about her pressures and they were 18!!!! I was so happy and relieved and excited. I can feel that in my insides right now as I am writing this to you... the relief and excitement and the way that I felt in my dream... Is this not the craziest dream ever??? And, then in the second moment, after realizing what I dreamed and how I felt, I want to cry and scream.... WHY CAN'T THIS BE REALITY???? Have you ever dreamed anything like this??? Just curious... I needed someone to share this with that I thought would possibly understand and then, when I got back from lunch... here was your email.... Thanks
for being here for me and I hope that you know that I am here for you too! Okay, I gotta go... I am at work and I just had to respond to your email.....

I hope that you are doing okay....

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

Hi Kay, glad it wasn't gout but I hope it doesn't happen again either. I'm not sure I understand. Are you saying this may have happened because the doctor didn't give you enough Remicade the last time. What is serum sickness? Did you begin Remicade in Jan.? That's when I began Methotrexate. The way these drugs affect each of us can be so unpredictable. I'm now up in the air about whether I'm going to be able to stay on Methotrexate. I guess time will tell for each of us.

Get well Kay and I hope there is no more pain. I'll keep you in my prayers.

Love,
Betty
bbutterfly@...

Hi Everyone,

I'm back from the hospital. Dr. Wilkes doubts that my problem was gout after all. In ER they gave my 40 mg prednisone and a percocet(the pain was AWFUL), and started IV fluids, and I started to feel lots better. Right now he's researching serum sickness, which means it could be a delayed reaction to my last Remicade(5 weeks ago). He didn't use as much of it this time, which might be part of it, plus, so much time had elapsed(since early Jan.). He's consulting with a RA doc who uses Remicade a lot(I'm just one of two patients Dr. W is treating with Remicade so far, but he has plans to start others, which he wants to consider based on what I just had).

The left bundle branch heart busines is something I'd had for a while and my cardiologist is watching it. I had a new echo today. It wasn't a term I'd recalled before, but it's had to keep it all straight.

I think I'm getting great care, and I'll let you know when I know more. Thanks for the concern I've received from all quarters.

Kay

Hi Everyone,

I'm back from the hospital. Dr. Wilkes doubts that my problem was gout after all. In ER they gave my 40 mg prednisone and a percocet(the pain was AWFUL), and started IV fluids, and I started to feel lots better. Right now he's researching serum sickness, which means it could be a delayed reaction to my last Remicade(5 weeks ago). He didn't use as much of it this time, which might be part of it, plus, so much time had elapsed(since early Jan.). He's consulting with a RA doc who uses Remicade a lot(I'm just one of two patients Dr. W is treating with Remicade so far, but he has plans to start others, which he wants to consider based on what I just had).

The left bundle branch heart busines is something I'd had for a while and my cardiologist is watching it. I had a new echo today. It wasn't a term I'd recalled before, but it's had to keep it all straight.

I think I'm getting great care, and I'll let you know when I know more. Thanks for the concern I've received from all quarters.

Kay

Wow, yes that is a good news bad news results. Prayers continue for Tara
and all of you.
Blessings,
JanW
Jan Windz
Grandma to Yossi the powerbaby. Mom to Josiah,9, Eisenmenger's
physiolog,pulmonary hypertension, DD,Scoliosis,etc.;Felix,6, kidney tx
8/31/01, C.P. Samantha,17, HH and Jordi (HH)28

Hi Sooey, I'm so glad it did not turn out to be cancer. Sarcoid is
definitely the better of the two. Your pulmonologist is being very thorough
and I am delighted to hear that she isn't going to rush you in to treatment.
From my experience, I see treatment as more of a last effort in this. I am
speaking from what I have learned through my own experiences. Taking
steroids should be done with very careful and thoughtful consideration.
Keep us posted on your tests. Ask us any questions you have as there is a
wealth of experience in this group with Sarcoidosis. We will do our best to
support and comfort you. There is also a lot of love on the part of the
members of this list.
Sooey, I will keep you in my prayers and please know that you are now a
member of this wonderful family of people with Sarcoidosis.
BettyThomas - Moderator

Hi everyone
Just a quick update, lucky to find a computer at ronald mcdonald house.
Tara's MRI bought good and bad news. First up there is NO vascular ring around
her lung bronchi tube. It is being compressed between her IVC and right
pulmonary artery. Good that they dont have to do surgery, (cause it cant be
fixed). Bad that it is uncorrectable. It will be a battle to keep the lung
healthy. A normal healthy person would have the lung removed but not an option
for a child with PH. Too high risk surgery and would only make PH worse and
cause right ventricle failure.
Dont know what long term outlook we are facing with this added problem. Tara is
half way thru a two course of IV antibiotics to clear remaining infection from
pnuomonia last October.
Signing off now, best wishes
chris
mum to Tara

Hello All,
I have Sarcoidosis. Darn it, darn it, DARN IT! I got the diagnosis
just about two weeks ago. I was glad to get the final word and, if
truth be told, I was glad to hear that it was Sarcoid. I had been told
that there was a 50/50 chance that it was lung cancer.
It all started when I had a routine colonoscopy on June 19th. My
colon was very twisted and curvey, the Dr. told me I needed abdominal
x-rays just to make sure that 'twisted' was normal for me. As it turns
out, twisted is the way I was made, but when the x-rays were taken
they saw the bottom of my lungs and saw the scaring. They ordered a
full set of chest films. The next day my Dr. called to tell me that I
needed a cat-scan of my lungs. The results of that were 'not
altogether normal'. He told me he was sure I had Sarcoidosis, that it
was treatable with steroids and that I would probable need a biopsy.
He sent me, along with my chest films and cat-scan, to a
Pulmonologist. She told me that she was sure that it was Sarcoid but,
there were so many locations in both of my lungs that a biopsy would
not give them an accurate diagnosis. She ordered a pet-scan, a TB
test, a PFT and a blood test. The pet-scan came back positive, many,
many, many large and small spots on both lungs, at which time she told
me there was a 50/50 chance that it was lung cancer. She sent me to a
surgeon who did a 'medial stenoscopy' (sp). He went through the
bottom of my throat at the clavical, into my trachea for some nodules
then into my chest cavity for lymph nodes. We got the results, all
benign for cancer, but it is Sarcoid.
So now what? The Pulmonologist called to tell me that she is not
recomending treatment at this time. Since this was an 'incidental
pick up', meaning that they found it by chance, she does not want me
to start on steroids. I've known for several years that I have
breathing issues. I thought it was allergies. I wheeze often, but as
long as I take my clarinex, it goes away. I don't want to go on
steroids, but I also don't want to lose anymore healthy lungs tissue.
My PFT test came back at 57%, not exactly sure what that means but I
know it's not great.
Sorry this is so long, I just needed to vent and reach out for some
comfort from people who know what I'm talking about. Thanks for being
there, I'm glad I found you.
Sooey

Hi McSooey and welcome to Sarcoidosis Support. I'm sorry if you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and know that, and "knowledge" because we are all so willing to share what we know and learn with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.

BettyThomas - Moderator

Hello there Patrice.... thank you so much for asking about my girls, you are such a thoughtful person!

As for the pictures, this is your official invitation to Bailey's carepage... (not that you needed an official invitation... maybe I should just say a personal invitation! ~ I don't know why I haven't invited you before!) Her carepage has so many pictures, not to mention information on what's going on with her (and us too!).... go to www.carepages.com and her carepage name is baileybrewer. Let me know if you have any problems acccessing her page and we will see what we can do!

You cannot imagine how often I think about you.... I simply cannot imagine all the emotions you have gone through... I see you as such a strong mom full of wisdom and inspiration. I want to apologize for not checking in with you over the past few months. I have been so busy with all the craziness of our lives that I have let things slip. (I should stop making excuses and do the things I should be doing!) I don't get to post as often, here or on the PHA website. I feel like I am letting my "mission" of spreading the word about PH slip... something I feel that I should be doing... BUT, I started a new job in October that supplies us, as a family with so much more... additional income, much better and cheaper insurance, a more secure future... I could go on with the benefits of this job but I could also mention some of the drawbacks.... The main being that I don't have the freedom that I once had with doing things that I once did.... So, I had to weigh the issues and guess what
won! I will say this... my mother-in-law cares for the girls while I am work and if it weren't for that, I would be at home definitely! She actually retired (after 30+ years) with the same company that I am working for now! (Ingersoll Rand Company, not sure if you have heard of them!) I depend on her greatly and she is such a wonderful person.... and, my husband is in a position at his job where he can be off as needed for the simple dr. visits and whatnot. It's all working out so far except the wants of me.... with the PH awareness... I will do what I can!

Okay, on to something else, you being such a wise mom that I look up to for inspiration and insight... I had a dream last night. And, it was so weird.... when I was driving to meet a friend for lunch earlier today, it hit me that I had dreamed this dream last night (does that sound weird?).... I dreamed that Bailey went to the doctor (not sure which one) and I got the reports back about her pressures and they were 18!!!! I was so happy and relieved and excited. I can feel that in my insides right now as I am writing this to you... the relief and excitement and the way that I felt in my dream... Is this not the craziest dream ever??? And, then in the second moment, after realizing what I dreamed and how I felt, I want to cry and scream.... WHY CAN'T THIS BE REALITY???? Have you ever dreamed anything like this??? Just curious... I needed someone to share this with that I thought would possibly understand and then, when I got back from lunch... here was your email.... Thanks
for being here for me and I hope that you know that I am here for you too! Okay, I gotta go... I am at work and I just had to respond to your email.....

I hope that you are doing okay....

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

dear Melissa,

Patrice let me see some updated pictures of her children. I was blown away at how time flys because since the last pics they have really grown.

I would love to see a pic of your girls when you have the time if you feel comfortable sending it...I bet they are getting bigger also........

I hope all has been going well for your family and that you all are enjoying a happy healthy new year..much love, celeste

if there is a pic site connected to this list..please send me the information on how to see the pics....I really like seeing the children and how they are growing and stuff....love me

Hi
I'm setting up a birthday calendar and need your help. Just click the link below
and enter your birthday details. (It's quick, easy and you can keep your age
secret!)
http://www.birthdayalarm.com/bd2/76729013a97797008b1327488207c811375800d1718
Thanks
Valeria

KAY,
MAYOCLINIC.COM HAS GOOD REFERENCE ON GOUT YOU WILL BE ABLE TO FIND
IT UNDER DIEASES AND CONDITIONS.....
HOPE THIS HELPS YOU.
WILL BE THINKING ABOUT IN MY PRAYERS.
BECKY_SUNLIGHT1956

Hi everyone. Today was my monthly appointment with my lung doctor. He was very alarmed when he read the results of my ACE test. This test is to show how active the sarc. is in the body. It was 50 and the one done one month previous was 7. He says normal is between 5 and 52. He doesn't know why it has gone up so high. He sent me to the lab to have the test redone in case it is a mistake. I am also having the CT scan on Friday so will see how that compares to the one I had done last year. That will show the sarc. activity in my lungs. All my other tests were good. No problem with white blood cells, kidneys or liver. All the things that the Methotrexate could damage. I'm continuing on the Meth at least until my next appt. in one month. He'll evaluate the new blood tests and the CT scan then and we'll go from there. Ray, don't get discouraged, this may just be a mistake and will be ok. It also doesn't mean it won't work for you. I really feel better and am
breathing very well so I'm not going to get too alarmed by this. Time will tell what is going on. Just wanted you all to know.

My love to all,

Betty
bbutterfly@...

Barb, Jacob is so young to be going through this so bravely. Like Carol's
little girl. Kids are so adaptable and do what they have to do and with
probably a lot less complaining than we do. I hope Jacob's condition will
improve. I have kept him in my prayers and will continue to do so.
Love,
Betty
bbutterfly@...
Like photographs of flowers, trees, outdoor scenes, birds and animals?
Join OutdoorPhotos email group at

I love it JoAnn. At least I know I'm not alone. lol

Betty
bbutterfly@...

Hi All,
I've been reading all the postings of Ray and his O2 canisters. I
had never heard of "oxygen bars". Kind of a neat concept except it's
a shame that most people do it all for the wrong reasons.
Anyhoo, Ray, here's my nickel's worth on O2. I'm not on it but Jacob,
my grandson, is on 1 liter/minute when he uses it. (He had a CT scan
of his lungs last month and has only 47% of both lungs working and
they aren't doing too good.) He used to be on it 24/7 and now, he
uses it as needed, which is quite often when he's outside playing.
At bedtime, he's on it all night.
He has a humongous-sized O2 tank in his bedroom that took two guys
and a wheeled "dolly" to get into the house and then to his room.
This is in case we have power failures and his machines fail because
of lack of electricity. He also has the tanks that you refer to as
the 3-hour tanks. He has a shoulder carry-case they fit into,
although we don't let him carry the O2. We have been able to make
these last as long as between 4-6 hours, depending on his activity
level. Then, he has some that are a size that are probably like the
larger one you describe. On an adult, they are about knee-height.
We have a wheeled carrier for these. The tank sits into a well-like
space and it has a handle for pulling/pushing. When he uses these
(such as on longer car trips), we lay the carrier and all down on the
floor and secure it with blankets (so no one or nothing accidentally
kicks the nozzle end.
Jacob also has headaches and puffy eyes after sleeping with the O2 at
nite. The doc said the headaches are from an insufficient amount of
oxygen getting to his brain and to find a way to elevate his head -
have you ever tried to figure a way to keep a 7-yr old in one place
during the nite? The puffy eyes? Who knows what's causing them. I
think it all goes hand-in-hand (or head-and-eyes) with the amount of
oxygen in the system.
I think Betty had a great idea of using the seat belt - if the tank
isn't too small for it to be belted snugly. The other idea of a
bungee cord is good, too, but I, personally, would have no idea how
to wrap a bungee cord around the seat back and the tank. Of course,
that's just me - not mechanically inclined.LOL
Well, Ray, after all my talking, you have, no doubt, already figured
out a way to secure the tank. Just one more thing, do as your doc
says and use the O2.
Welcome to all the new members. You're all in my thoughts and
prayers.
Hugz to all.
Barb

Loved this poem, Betty. It's so true.......................and as Don Henley adds,
'Time keeps ticking, ticking, ticking away'..................

Ray (& Liz)

=====================================================

Kaitlyn is still in the hosp. she will probably be in for
another week. They are moving her up very slowly back on
formula, she should get off the tpn by the end of sunday night.
They are wanting to give her a tune up for her heart. So we are
not leaving the hosp. until she gets her weight up. She has a
central line in her neck. She has been feeling better the
past couple of days. She is still really weak, but geting
better. She still has not been able to open her birthday gifts
from mommy and daddy yet.
thanks,
michelle gee

Many prayers and thoughts to Miss Kaitlyn.

Heart Hugs.
Tanya

If you need anything call us, we can help out in anyway-
[LINK] Happy Holidays!
www.carepages.com sophie929
www.babyjellybeans.com haley1

Old Dogs & Children & Watermelon Wine

by

Tom T. Hall

God grant me the senility to forget the people I never liked anyway, the good fortune to run into the ones I do, and the eyesight to tell the difference.

Now that I'm 'older' (but refuse to grow up), here's what I've discovered:

I. started out with nothing, and I still have most of it.

2. My wild oats have turned into prunes and All Bran.

3. I finally got my head together; now my body is falling apart.