I have not had my therapy yet and therefore like to hear about other's experiences. I am also curious as to everyone else PRE-therapy health condition. I showed mine in a previous post under the Pulmonary section with the title 'three month update'. But I will copy and paste it here.
I know I feel better hearing about other's state of health and mind before seeking the therapy,---and of course their progress after therapy. So I just thought maybe some of you would feel comfortable enough to share with us. I know when I wrote mine out that it helped me vent a little and hope perhaps it let others get to "know" a very important part of where I've been and how I've made it to now.
So please, feel free to contribute. Below, is my story:
Barb, Bev and Rose Part 1
I am going to be 59 shortly. I am told I went thru menapause 5 years ago or so. I don't know because I was on depo prevara and that kinda screws up the old menstrual cycle. I did have some hot flashes but used over the counter stuff for a very short time. Have had nothiing since. So maybe---just maybe, my cheerful self won't have any of that. (And I just know my husband prays for exactly that.) I've always been a pretty "up" person. Of course, I have my moments, like anyone else.
In October '03, I was taking care of my only grandaughter while mommy worked. I had her about 10 hours a day, and my husband was home recuperating from breaking his hip, breaking his arm and breaking some ribs from falling from a ladder while helping my daughter to move in May. At that time, I used the O2 when caring for her. (Exertion.) But a time came in April of '04 when one day, while wearing O2 at 4 lpm, I felt as tho' I couldn't breathe. I upped it to 6mpl out of fear. No help there. Then had husband call 911. I was aware and talking when they got here, and remember getting off the couch and putting myself on the stretcher. After that----zippo! When I awoke, I thought it was the night of the day I went in the ambulance to the hospital. Nope. I had been intubated and put on life support. Apparently,----each time they went to remove the intubation tube, my blood pressure sky rocketed. So---the put me in an induced coma. I had already been there 8 days!!!!!!! ( But did not know this at the time. I learned this AFTER I got home.) All in all---I was there for two weeks. Never found the cause. Only said the only possible thing they could think of was that I had contracted a heart virus. I had never heard of such a thing!!! I found out from a friend, that his mom had also had a heart virus and was sleeping when it happened; and she passed away. Anyway---I was quite weak after being bed ridden for two weeks. They had physical therapists come to the house to help me get back on my feet and I was not only religious in doing as they said---but doing it longer!! (Type A personality). I was frustrated that I was on so many meds that when I'd get up to walk to the bathroom I was so dizzy and weak. I went from my very own precious cardiologist, to another to get another opinion!!!! Man----BIG mistake. I'll have to continue this in an additional post??
Barb, Bev and Rose Part 2
She told me that she wanted to refer me to Rochester (Minnesota) for a heart transplant. That I could "go" any minute. My heart function was at 20% or less. That is 1/3 of full function. (The 60% is full function because at any one time---your heart pumps 60% of the blood in your body.) I went back to my doc (a male and a great doctor), and he was in shock as she immediately wanted to put me on coumidin and change my meds. He said that if he had referred me to Rochester for a transplant---"they'd have laughed me out of my profession!!!!). I was being impatient. He told me it would take time, but I'd have to GIVE it some time.....not weeks or months, but TIME!!! Well, I went to pulmonary rehab and my first echo showed my heart at 30% (now I'm up to 1/2). As of January '07---guess who has full function in her heart!!!!! Yup---that would be me. And I was religious AFTER rehab to be on the treadmill (down in the basement) no less than 3 times a week. With O2 at 3mpl. In a few months( 5 or 6 ), I was doing a mile at a time with NO rest period at a 2 level. (2 mph). I had started at lowest speed for 10 minutes. I was breathing better and doing more without the O2. They want me on it when I sleep because your O2 does lower when reclined; AND when I exert myself--like exercising and cleaning. I learned to listen to my body and not "push" myself. When I'm out---if I tire walking--I sit!!!!! And I quickly reoxygenate in a matter of maybe, 3 minutes. So---Now--I'm TOO well to be put on the list at this time. I get it-----and yet I'm disappointed. I worked hard to get there---and now have to wait to be on O2 24/7!!!!!!
I was told a LVRS might help in '03 and they took the CT scans. My disease was too diffuse. (2-1-0). That the LVRS wouldn't help & that actually, it may do more harm than help. So, my doc moved on to transplant. I"ve been seen by Clevland Clinic since March of '07. I'm from East Syracuse, NY and I was going there every 3 months to be evaluated as to whether I'd be put on the list yet. I was there in June and again in September. I should be sceduled to be there at the end of this month. Should I mention what I'm thinking about doing? I know I will mention it to my home pumonary doc. I know there are some docs that may "poo-poo" the thought and others who will be curious. I've been tallking back and forth with Tony Hamel since sometime last year. He has been such an inspiration for me. He told me about you guys and I went a-huntin"!!!!! As of now---I use O2 exercising and cleaning. Very seldom need my inhalers as I always be sure to take my nebulizer treatments. For someone who doesn't see me 24/7, they can't believe I'm being considered for a transplant. They think I'm "just fine". I arrange my outings to just after a treatment. Or---I have a portable nebulizer to use when I'm out too long and need to keep going like the energizer bunny. I take no less than 2 Mucinex a day. And when going where there are a lot of people----malls, church--etc.---I swear by Airborne!!!! That stuff is awesome. I've always taken vitamins and supplements; so that part shouldn't be bad. I take C, E, B complex Calcium, etc. Been doing that since '93.
It is so great to have a support group like you guys. Serious, playful, scared, brave, and most of all----adventurous and helpful!!! Thank you so much for all your input. And thank God we have you here!!!!
Barb, I will let you know about the Power Lung. Is it available from you now; or will be soon? Take care all----and BREATHE (easy)!!!!!!!!!!!
I know I feel better hearing about other's state of health and mind before seeking the therapy,---and of course their progress after therapy. So I just thought maybe some of you would feel comfortable enough to share with us. I know when I wrote mine out that it helped me vent a little and hope perhaps it let others get to "know" a very important part of where I've been and how I've made it to now.
So please, feel free to contribute. Below, is my story:
Barb, Bev and Rose Part 1
I am going to be 59 shortly. I am told I went thru menapause 5 years ago or so. I don't know because I was on depo prevara and that kinda screws up the old menstrual cycle. I did have some hot flashes but used over the counter stuff for a very short time. Have had nothiing since. So maybe---just maybe, my cheerful self won't have any of that. (And I just know my husband prays for exactly that.) I've always been a pretty "up" person. Of course, I have my moments, like anyone else.
In October '03, I was taking care of my only grandaughter while mommy worked. I had her about 10 hours a day, and my husband was home recuperating from breaking his hip, breaking his arm and breaking some ribs from falling from a ladder while helping my daughter to move in May. At that time, I used the O2 when caring for her. (Exertion.) But a time came in April of '04 when one day, while wearing O2 at 4 lpm, I felt as tho' I couldn't breathe. I upped it to 6mpl out of fear. No help there. Then had husband call 911. I was aware and talking when they got here, and remember getting off the couch and putting myself on the stretcher. After that----zippo! When I awoke, I thought it was the night of the day I went in the ambulance to the hospital. Nope. I had been intubated and put on life support. Apparently,----each time they went to remove the intubation tube, my blood pressure sky rocketed. So---the put me in an induced coma. I had already been there 8 days!!!!!!! ( But did not know this at the time. I learned this AFTER I got home.) All in all---I was there for two weeks. Never found the cause. Only said the only possible thing they could think of was that I had contracted a heart virus. I had never heard of such a thing!!! I found out from a friend, that his mom had also had a heart virus and was sleeping when it happened; and she passed away. Anyway---I was quite weak after being bed ridden for two weeks. They had physical therapists come to the house to help me get back on my feet and I was not only religious in doing as they said---but doing it longer!! (Type A personality). I was frustrated that I was on so many meds that when I'd get up to walk to the bathroom I was so dizzy and weak. I went from my very own precious cardiologist, to another to get another opinion!!!! Man----BIG mistake. I'll have to continue this in an additional post??
Barb, Bev and Rose Part 2
She told me that she wanted to refer me to Rochester (Minnesota) for a heart transplant. That I could "go" any minute. My heart function was at 20% or less. That is 1/3 of full function. (The 60% is full function because at any one time---your heart pumps 60% of the blood in your body.) I went back to my doc (a male and a great doctor), and he was in shock as she immediately wanted to put me on coumidin and change my meds. He said that if he had referred me to Rochester for a transplant---"they'd have laughed me out of my profession!!!!). I was being impatient. He told me it would take time, but I'd have to GIVE it some time.....not weeks or months, but TIME!!! Well, I went to pulmonary rehab and my first echo showed my heart at 30% (now I'm up to 1/2). As of January '07---guess who has full function in her heart!!!!! Yup---that would be me. And I was religious AFTER rehab to be on the treadmill (down in the basement) no less than 3 times a week. With O2 at 3mpl. In a few months( 5 or 6 ), I was doing a mile at a time with NO rest period at a 2 level. (2 mph). I had started at lowest speed for 10 minutes. I was breathing better and doing more without the O2. They want me on it when I sleep because your O2 does lower when reclined; AND when I exert myself--like exercising and cleaning. I learned to listen to my body and not "push" myself. When I'm out---if I tire walking--I sit!!!!! And I quickly reoxygenate in a matter of maybe, 3 minutes. So---Now--I'm TOO well to be put on the list at this time. I get it-----and yet I'm disappointed. I worked hard to get there---and now have to wait to be on O2 24/7!!!!!!
I was told a LVRS might help in '03 and they took the CT scans. My disease was too diffuse. (2-1-0). That the LVRS wouldn't help & that actually, it may do more harm than help. So, my doc moved on to transplant. I"ve been seen by Clevland Clinic since March of '07. I'm from East Syracuse, NY and I was going there every 3 months to be evaluated as to whether I'd be put on the list yet. I was there in June and again in September. I should be sceduled to be there at the end of this month. Should I mention what I'm thinking about doing? I know I will mention it to my home pumonary doc. I know there are some docs that may "poo-poo" the thought and others who will be curious. I've been tallking back and forth with Tony Hamel since sometime last year. He has been such an inspiration for me. He told me about you guys and I went a-huntin"!!!!! As of now---I use O2 exercising and cleaning. Very seldom need my inhalers as I always be sure to take my nebulizer treatments. For someone who doesn't see me 24/7, they can't believe I'm being considered for a transplant. They think I'm "just fine". I arrange my outings to just after a treatment. Or---I have a portable nebulizer to use when I'm out too long and need to keep going like the energizer bunny. I take no less than 2 Mucinex a day. And when going where there are a lot of people----malls, church--etc.---I swear by Airborne!!!! That stuff is awesome. I've always taken vitamins and supplements; so that part shouldn't be bad. I take C, E, B complex Calcium, etc. Been doing that since '93.
It is so great to have a support group like you guys. Serious, playful, scared, brave, and most of all----adventurous and helpful!!! Thank you so much for all your input. And thank God we have you here!!!!
Barb, I will let you know about the Power Lung. Is it available from you now; or will be soon? Take care all----and BREATHE (easy)!!!!!!!!!!!
