My Primary Pulmonary Hypertension

C

CCfan

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:topic: I am sorry, excuse me, I have a bad day with my grammar. Sometimes, I hate English grammar that why ASL can be destroy my own word with grammar of English! :mad: That language don't have an English grammar instead of ASL. I was disappointed with ASL that does not have a grammar, but yet, I love ASL is good for without grammar or
without a confusion while talking with the deaf people. This is very best
language for me. ( :ily: for ASL )

Anyways, it's time on this topic: I want to share with you. I got a diagnosis at around year 1999-2000. I don't know why, how, where I got diagnosis PPH-- it might comes from... born or by smokehand smoke by my families, huh? But unfortunately, anyone by scientists are doesn't know how, where it comes from by natural causes? :dunno2:

By the way,
I have a medicine FLOLAN in the pump for my lung with a disease for over 5 years.
That it helps me to survive laster longer more than 50 years, I think, but I heard it will be possibly survive more than 15 years? I don't know,
I will have a wait and see. Anyways, I want to show you about this picture art from others what I have it look here at: http://www.mater.ie/pha-ireland/images/flolan.jpg
from same picture it below this here at Prostacyclin:
Pulmonary Hypertension-Ireland

If Flolan or pump would be not available an treatment before 1997 or now, but fortunately I got a around 1999 or 2000, before my body was got installed in my body of Flolan medicine interior the pump at February in 2001 as when I were 16 in 2001.

Read here about PPH for more information:
Pulmonary hypertension - Wikipedia, the free encyclopedia

I glad I have to live longer. I very happy that I loved my live here with my families, friends,
Minnesota, and my favorite city is Woodbury, Minn that I lived around this city, because these things are perfect matching for me! :)

I wonder if any people who are deaf, using with Flolan in the pump or other something different medicines for PPH
(Primary Pulmonary Hypertension)?? :dunno: If you have anyone of your husband/wife; family; cousins; old-friend; your current friends; or you have still keep in the touch that anyone had/have, please let me know if
you have them who have a PPH?

Too bad for me, while at 16, I got a pump that must be accompanying
at all time with my family or friend, that anyone knows to how work on Flolan, because I am deaf that I cannot hear alarm; or it is not my job due the flushing; not feeling good during on an emergency
if my pump broke; alarm while I having a trouble with my cord in my chest, high-pressure or something wrong else; or when it get low by battery and that will have an alarm then someone put a replace new battery for my pump machine. I never got my pump broken yet. I have experience at one time,
my mother to forget to replace a new battery then it sounds alarm.
I have experienced about 10 to 30 times, my pump get beeping or
alarm for High Pressure that it cannot push to my lungs, that is weird.
:ugh:

If you don't understand this or something about missing, confusion, or et cetera that I forget to add, I will repost again for add an issue if you ask/answer to me. ;)
 
CCfan said:
:topic: I am sorry, excuse me, I have a bad day with my grammar. Sometimes, I hate English grammar that why ASL can be destroy my own word with grammar of English! :mad: That language don't have an English grammar instead of ASL. I was disappointed with ASL that does not have a grammar, but yet, I love ASL is good for without grammar or
without a confusion while talking with the deaf people. This is very best
language for me. ( :ily: for ASL )

Anyways, it's time on this topic: I want to share with you. I got a diagnosis at around year 1999-2000. I don't know why, how, where I got diagnosis PPH-- it might comes from... born or by smokehand smoke by my families, huh? But unfortunately, anyone by scientists are doesn't know how, where it comes from by natural causes? :dunno2:

By the way,
I have a medicine FLOLAN in the pump for my lung with a disease for over 5 years.
That it helps me to survive laster longer more than 50 years, I think, but I heard it will be possibly survive more than 15 years? I don't know,
I will have a wait and see. Anyways, I want to show you about this picture art from others what I have it look here at: http://www.mater.ie/pha-ireland/images/flolan.jpg
from same picture it below this here at Prostacyclin:
Pulmonary Hypertension-Ireland

If Flolan or pump would be not available an treatment before 1997 or now, but fortunately I got a around 1999 or 2000, before my body was got installed in my body of Flolan medicine interior the pump at February in 2001 as when I were 16 in 2001.

Read here about PPH for more information:
Pulmonary hypertension - Wikipedia, the free encyclopedia

I glad I have to live longer. I very happy that I loved my live here with my families, friends,
Minnesota, and my favorite city is Woodbury, Minn that I lived around this city, because these things are perfect matching for me! :)

I wonder if any people who are deaf, using with Flolan in the pump or other something different medicines for PPH
(Primary Pulmonary Hypertension)?? :dunno: If you have anyone of your husband/wife; family; cousins; old-friend; your current friends; or you have still keep in the touch that anyone had/have, please let me know if
you have them who have a PPH?

Too bad for me, while at 16, I got a pump that must be accompanying
at all time with my family or friend, that anyone knows to how work on Flolan, because I am deaf that I cannot hear alarm; or it is not my job due the flushing; not feeling good during on an emergency
if my pump broke; alarm while I having a trouble with my cord in my chest, high-pressure or something wrong else; or when it get low by battery and that will have an alarm then someone put a replace new battery for my pump machine. I never got my pump broken yet. I have experience at one time,
my mother to forget to replace a new battery then it sounds alarm.
I have experienced about 10 to 30 times, my pump get beeping or
alarm for High Pressure that it cannot push to my lungs, that is weird.
:ugh:

If you don't understand this or something about missing, confusion, or et cetera that I forget to add, I will repost again for add an issue if you ask/answer to me. ;)
Click to expand...

Sorry about problems with health, but glad something done to help you feel better and live longer.
 
CCfan, it's terrible that you have such a health condition. Being deaf, I can understand how scary it can be since you cannot hear the alarm.

Have you asked your doctor if there was a possibilty you could have a vibration mode installed in your pump to alert you when the battery is low? If they can, you can become more independent from your family this way.

I hope you'll be able to stick around for a long time. You're a contributing member of Alldeaf.
 
Banjo said:
CCfan, it's terrible that you have such a health condition. Being deaf, I can understand how scary it can be since you cannot hear the alarm.

Have you asked your doctor if there was a possibilty you could have a vibration mode installed in your pump to alert you when the battery is low? If they can, you can become more independent from your family this way.

I hope you'll be able to stick around for a long time. You're a contributing member of Alldeaf.
Click to expand...
:gpost:
 
I don't think that have a vibrate in my pump, because it's impossible;
expensive if it have vibration; or unable to make a new technology.
I am sure about anything that don't have a virbation, oh well.

OK, don't worry alldeaf users. I will be okay. ;) I'll be long live as
average life span. I know it can do it for me. I ask to my doctor, and my mother
how it my live been long? My doctor says, "it seems same as life span.
My mom says, "You will be live long as until for 80 years.
I would like to indepedent, that such my favorite: stay in my home without anyone at my home, but unfortunately, my mother won't let me to being alone--
I can walking without anyone that I know where it been place around here.
I don't deserve to drive when after I decided at age 17 since then...
Uh...[pausing]. I knew that worth about that--only are men can't talk too straight long. In thought of this--um, I thinking...
[my brain became pop as idea] Oh,
I found my own words...
:topic: My mom doesn't like indepedent while I would were washing dishes, cooking, and... um, I have a one more thing that my mother hates to my indepedent is one more thing... that would was bad obviously thing is... cleaning my room is not exempt for my mother. But I have exempt for mom will dependent on me, but just not a really depedent including: medical pump fixing,
change at one time every day after 24-hour after liquid medicine expires, making a medicine by our family
would does them such as: bottle mixing, medicine supplies would make an organize for twice week in one month...as bi-weekly
on these orders for this supplies on Monday-Tuesday, other supplies for Wednesday, other supplies on Thu & Fri, and other supplies on weekends. Making a medicine supplies... (see pictures of these medicines)
FLOLAN - [Drug - Image]
...that where comes from by a big mail about
wideth about 30 inches
and length about 14-18 inches that is biggest delivery through by Fedex from Accredos, Inc. that make a pay for delivery.
 
sigh, I am sorry that you don't feel free. I think that your mom is trying protect you before hurt yourself. You should thank her that she never give you away because of your health.
 
I never heard of it before and I do not know what to say since it is terrible thing to have but so grateful ur still here with us and share with us about it. No one deserve to be sick, I have health problem thanks to this stupid dr 10 years ago, if she told me to watch out my sugar blood, I would be more careful with what I ate and exercise more. Nah, she said "u do not have borderline diabetic, it is all in your head and need to see shrink" 4 years later, I got fullblown diabetic. oh well nothing I can do about it now but try to stay in good shape and live longer too. Grr, hope u find other deafers who have similar problem as yours, with but not with me. :( Hugs
 
ghsh1996 said:
sigh, I am sorry that you don't feel free. I think that your mom is trying protect you before hurt yourself. You should thank her that she never give you away because of your health.
Click to expand...



I am OK. :) I do not hurt myself. I hate to suffer myself! :ugh2:
My mom will take care of me, but she would protect at while I would in danger,
or she took to hospital because I having a problems with pump that why I said that was a stupid technology glitches, it doesn't understand what I am doing or I been doing fine, during
pump saying "High Pressure" that it doesn't push medicine to through
down the lungs... What a drat! ...at same time with sounds like alarm or medicore or faster beeping, but, I am deaf so I can't hear it that visually sound to my mother would hear and she will fix for me or if I have a stick with a problem, I will go to hospital for replace a new tube to better fix;
for a new pump without a going to hospital and I will be fine that something prevent from the medicine dripping on my lungs.
That why my pump would make sure, very visually understanding for my healthy conditions, that this would be good to have it would be watching
if I have a high-pressure.
 
I can definitely feel free as normally just like healthy.
For any exception, I had a clamp on my tube or feel weird during pump is messed up so I feel weird, or flushing behind inside the jaw or inside the face.

Oh-- excuse. I was bad. I made a verbally changed from
cord to tube on this post from last post that I said "cord".
Now, I am OK.

By the way, I does with an
indepedently at most-- most anything: I does at all indepdently on the job,
I does at all indepedently for my chores at my home,
I does them all indepedently for cooking unless them that would have a
new food recipe. I learned from my mom. I don't use learn myself unless a receipe. That might to be handle-- to good food.
Although, I don't need to know a how for them are medical conditions that my mom job for take care... me for my pump to fix.
Uh, oh, it's maybe... a new technology; new medicine will change the day
in my life about next decade or so it would possibly more near than half decades. I will... be stay alone at my home, walking without an person,
or go to with my friend when after that I get a new medicine advancements in next decades or more about 20 years. I don't know yet, I will wait and see.
No announced for this time yet for me and everyone of our families/friends.

Now, I have a new pump have no problem with a new tube for about almost
one year. Although, correctly I don't remember how it long comes
from last time that I was in the hospital. :) :dance2:
 
BUMP (BRING UP MY POST) P-Please you, and others can post for
me, too? Thank you. I want to hear from you, I'd love to hear from
you. :)
 
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