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)!!!!!!!!!!!
