Not sure how long ago this video was posted, keep her as healthy as possible. I have Alpha-1 MZ moderate / severe emphysema and my kids (28 and 25) are also MZ no symptoms at this time thank god. I get Aralast infusions weekly and try and stay as healthy as i can.
My son has A1AD and is currently in chronic liver failure. We are now accepting that transplant is our only option. His belly looks just like you little girls. He is 22 months old and has the most severe type- ZZ. His bowls and kidneys are now not able to function properly b/c of his liver. He is starting to swell in his face too. This breaks my heart to see babies suffer like this.
I have A1AD as well. I had an operation when I was 5 years old to remove half of my left lung due to the effects of enphasemia. After that, I spent a lot of time in and out of hospitals and I often felt a bit low because of my scars and the fact that I was different to my brother and sister. I have the zz strain which is the most severe strain and is commonly linked to enphasemia. No one expected me to live for very long.
But... now I'm 22 years old and still living a healthy life. I haven't been in hospital for quite a while now and I don't intend to go back... ever. A1AD isn't a death sentence, it is just another problem that can be overcome if you just believe that you'll get through it.
The best thing you can do is support the person who is suffering from this and help them believe that they are fine. That they are just like everyone else and have just as much chance at a normal life as those around them. That's what my parents did for me. They didn't treat me like I was going to die or like there was something wrong. They treated me like I was going to live, like a normal kid, and I think that is why I am still alive and healthy.
It's because of the strain I have. I am doing well know and I haven't been in hospital for quite some time, but I still have to be very carefull. My brother and sister were both lucky enough not to be affected but I was the unlucky one who got both z genes from both of my parents (hence I'm a zz).
The only way that can happen is if both of your parents are carriers, which is rare in itself. Anyway, hope things go well for you. We will both make it to 80, I assure you that is my intention.
There is this ONE man at work who smokes. I work out of a very small trailer, and he will wait for me to leave, then he lights up. The thing is, I come back a few minutes later ... he's gone, but the trailer is filled with smoke. Oh, I get SO MAD!
I warned my boss that it better STOP.
They have no idea the trouble I could bring. I don't want to - but when it comes
a total lack of respect for my health - I feel like the gloves can come off - real quick.
Yeah, people just don't understand. They think that because they can't see the effects on the outside, that there is nothing wrong. What they don't realize is how easily things can go downhill...
I've already had one operation and I've been in and out of hospital. I don't want to go back to that again.
Im 16 and have A1AD, im lucky enough to not be at the stage where i need a transplant, and i lead an almost normal life, playing sports, doing well at school and enjoying life. But there have been some very drastic changes in my lifestyle but i am grateful that i can an almost normal life.
I wish you all the best for the future, and i will always continue to raise money for A1AD sufferes and im even going to med school to help others with this condition.
Hi, I found your link on TransplantBuddies, I am Jeff, I had a kidney tx 10-26-07. I wasn't aware of alpha 1 either. Thank you for posting this video and making us aware. Keep up the good fight and keep promoting organ donation awareness. Feel free to check out a few of my videos as well. We all need to do our part to spread the word. You and your family are in my thoughts.
i had never heard of alpha 1 till i saw this video, very informative. we all need to be MORE aware of how important organ donation is. thanks for the info
I have Alpha 1 myself, lung affected. My heart goes out to you and your family. god bless you.
msPorta64 5 months ago
My grandson wears the same diapers. Awesome!
Hommelsto 6 months ago
Not sure how long ago this video was posted, keep her as healthy as possible. I have Alpha-1 MZ moderate / severe emphysema and my kids (28 and 25) are also MZ no symptoms at this time thank god. I get Aralast infusions weekly and try and stay as healthy as i can.
msPorta64 6 months ago
Just hold in your heart that your baby will be well SOON!! It is the only thought that kept me together!!
Brian
TATUMANDSOPHIA 6 months ago
My son has A1AD and is currently in chronic liver failure. We are now accepting that transplant is our only option. His belly looks just like you little girls. He is 22 months old and has the most severe type- ZZ. His bowls and kidneys are now not able to function properly b/c of his liver. He is starting to swell in his face too. This breaks my heart to see babies suffer like this.
becamarita1 6 months ago
I have A1AD as well. I had an operation when I was 5 years old to remove half of my left lung due to the effects of enphasemia. After that, I spent a lot of time in and out of hospitals and I often felt a bit low because of my scars and the fact that I was different to my brother and sister. I have the zz strain which is the most severe strain and is commonly linked to enphasemia. No one expected me to live for very long.
ByronSG 3 years ago
But... now I'm 22 years old and still living a healthy life. I haven't been in hospital for quite a while now and I don't intend to go back... ever. A1AD isn't a death sentence, it is just another problem that can be overcome if you just believe that you'll get through it.
ByronSG 3 years ago
The best thing you can do is support the person who is suffering from this and help them believe that they are fine. That they are just like everyone else and have just as much chance at a normal life as those around them. That's what my parents did for me. They didn't treat me like I was going to die or like there was something wrong. They treated me like I was going to live, like a normal kid, and I think that is why I am still alive and healthy.
ByronSG 3 years ago
wow. you developed emphysema before the age of 5?
I didn't start having symptoms until around the age of 30.
I was diagnosed with asthma, which I found to be odd because it just sort of seemed to hit me over night.
I was only diagnosed with A1AD, on April 30th will be 2 years.
What a roller coaster (of emotions) it has been. I'm at a point now that I feel pretty good. Physically, mentally.
I hope to live a long and healthy life as I do ALL of you who suffer from this disease.
((HUGS))
crazyPAgirl 3 years ago
It's because of the strain I have. I am doing well know and I haven't been in hospital for quite some time, but I still have to be very carefull. My brother and sister were both lucky enough not to be affected but I was the unlucky one who got both z genes from both of my parents (hence I'm a zz).
The only way that can happen is if both of your parents are carriers, which is rare in itself. Anyway, hope things go well for you. We will both make it to 80, I assure you that is my intention.
ByronSG 3 years ago
I am also zz. As is one of my brothers.
Our lung x-rays are pretty much identical.
Meaning, we have about the same amount of damage.
Our livers are in good shape -- which is great.
The rest of my siblings are carriers, as well as my kids.
I worry about one of my brothers.
He is the only one who smokes (besides my mom).
He seems to be in worse shape than me (or my brother with alpha).
I told him (yellled at him), he has to quit!
crazyPAgirl 3 years ago
he can still get sick -- that carriers can get sick too. Dummy won't listen. He's just like my mom.
Both very rude dedicated smokers -- you know the kind.
I just won't breath their air. simple as that.
crazyPAgirl 3 years ago
I know what you mean. My brother smokes as well and he is still at risk despite everything.
I also get very upset when people smoke around me. I've already sustained enough damage without everyone else causing any more.
I have to remind everyone about my condition all the time, which is really annoying at times. But things are going well.
ByronSG 3 years ago
I know exactly what you mean.
There is this ONE man at work who smokes. I work out of a very small trailer, and he will wait for me to leave, then he lights up. The thing is, I come back a few minutes later ... he's gone, but the trailer is filled with smoke. Oh, I get SO MAD!
I warned my boss that it better STOP.
They have no idea the trouble I could bring. I don't want to - but when it comes
a total lack of respect for my health - I feel like the gloves can come off - real quick.
lol
crazyPAgirl 3 years ago
Yeah, people just don't understand. They think that because they can't see the effects on the outside, that there is nothing wrong. What they don't realize is how easily things can go downhill...
I've already had one operation and I've been in and out of hospital. I don't want to go back to that again.
ByronSG 3 years ago
Im 16 and have A1AD, im lucky enough to not be at the stage where i need a transplant, and i lead an almost normal life, playing sports, doing well at school and enjoying life. But there have been some very drastic changes in my lifestyle but i am grateful that i can an almost normal life.
I wish you all the best for the future, and i will always continue to raise money for A1AD sufferes and im even going to med school to help others with this condition.
guttaz11 3 years ago
Bless their little hearts
I too have A1AD, but am lung effected.
I also have 1 brother who is like me.
Years ago, we had 3 close family members develope Cirrhosis, for reasons 'unknown'.
NOW we know --
Unfortunately, none of them made it -- of course, transplants werent an option way back when.
I wish a long & healthy life for your family.
ps. I avocate strongly for this disease, and I will continue until my last breath.
crazyPAgirl 3 years ago
Hi, I found your link on TransplantBuddies, I am Jeff, I had a kidney tx 10-26-07. I wasn't aware of alpha 1 either. Thank you for posting this video and making us aware. Keep up the good fight and keep promoting organ donation awareness. Feel free to check out a few of my videos as well. We all need to do our part to spread the word. You and your family are in my thoughts.
mistermud 3 years ago
i had never heard of alpha 1 till i saw this video, very informative. we all need to be MORE aware of how important organ donation is. thanks for the info
noconway 3 years ago