Pulmonary Rehab is great. The therapists are super helpful, positive and encouraging. I'm building up stamina, learning tons or great (scary) stuff.
Yesterday was the first day of the Pulmonary Fibrosis Clinical Trial that I'm in. Feels like a crazy dream (nightmare). Clinical trial first hour is about paperwork, risks, rewards, protocols and commitment. Then there is drawing blood (lots of blood), a super EKG with the little electrodes placed from ankles to neck!
So I'm laying there exposed and they do two EKGs. First one, one of the nurses in the room says "thats not a good one, take another." The machine does its short eeerrrrr noise and nurse says again, "not good, hold on." They take several of the electrode patches off and replace them with new ones. Then eeeerrrrr and again, she says, "do another!"
Calmly as I can I ask if they are saying not good because of what the EKG is reading, thinking that maybe I'll die from a heart attack before the IPF gets me. They reassure me that its not me, its the machine. She says the machine is just really old and its hard to get a good reading. They try again, apologizing for leaving me exposed for so long. (I typically don't bother with a bra but I'm kind of happy I wore one to the party that day. Not because I was embarrassed being exposed but because the room was kind of cold...if you know what I mean!)
So they try again and this time it works. Report comes out super good. Oh yeah, forgot to tell you another nurse came in to draw my blood while I was getting the last EKG because they tried 2 times before and couldn't get the blood to flow.
I felt bad for the first lab tech to try. She came in with what seemed like a hundred tubes and started to explain that it wasn't really as much blood to be taken as it looked to be with all the tubes. I tried to make a joke about passing out with the amount of blood she was going to drain from me. Apparently she was not in a funny mood because she seriously looked me in the eye and asked, "Do you have a problem with needles or blood draws?"
"No, I don't," I answered, "UNLESS the person drawing my blood misses catching the vein twice." I explained to her that if a lab person or nurse misses twice I always ask for another person to do it. My experience has been that the person becomes frustrated and we both lose, hence, someone fresh to try.
She looked just a bit anxious and missed twice! Well, of course she did. Note: she did not hurt me. She was gentle and I was probably a little dehydrated. So I started drinking plenty of water during the other tests.
Eventually all the tests were done and blood drawn, cups peed in and clothing back in place.
But wait, it got better. The trial coordinator (my very own personal coordinator...how lucky am I?), anyway, the trial coordinator comes in with a pretty blue and white box. Breaking it open, she pulls out a brand new IPhone, a 16 page instruction book and a spirometer. Once a week I get to breathe into this little machine and the phone reports it to the trial powers-that-be. Cool huh!
Not so cool. The machine has a mouthpiece and you inhale, exhale, inhale, exhale, inhale, exhale and then the machine demands INHALE....EXHALE QUICKLY!
Easy, right? No, not easy.
You have to exhale as quick and forceful as you can and the machine demands, "Keep Going" over and over and over and over and over, until you feel like you (me) are going to pass out, or the veins throbbing in your temples are going to explode. You (me) decide not to have a stroke or fall off the chair, stop exhaling. The machine then gives you a "Fail" and encourages you to try again.
I got eight attempts yesterday and only got the "Success!" flag twice. The machine then tells you to stop and try again tomorrow morning. I guess almost dying 8 times a day is the maximum they will allow in the trial. Not sure if that is mandated by the research agency or the feds but doesn't really matter, I'm just thankful it is only 8.
Today, I try again. This time I have The Guy as my helper. (Man, I love him!) So we try to figure out the Iphone, get a connections, got the blue light and we're off to the races.
I tried. FAIL. I tried again. FAIL. The Guy is harmonizing with the machine. "Keep going. Keep going. Keep going! Keep going!" FAiL!
I swear to you, my friends that my Guy got tears in his eyes. He actually apologized for not being able to help me or give me hints. He tried. He tried so hard. Blow harder, blow quicker, tighten your mouth around the tube. He tried so hard to help me succeed at blowing in the bossy machine's tube to get a SUCCESS. He is also aware of my authority issues and that having a machine making demands of me is pissing me off!
I finally got it! I blew so fricking hard and exhaled so much that a headache and chest pain rushed into the vacancies created. I'm having a difficult time trying to figure out why a program for someone with pulmonary problems and the stress of knowing there is no cure are expected to succeed but then again, "Mine is not to question why, mine is but to do or"...oh fuck!!
So, I just want to share with you how awesome my honey is. I met a couple of friends for coffee and was gone for about 4 hours. (We always say we're meeting for coffee but we're really meeting for meaningful conversation, hence the 4 hours). While I was chatting away with friends, the Guy cleaned the house from top to bottom. Washed the sheets, made the bed, put a roast in the crock pot greeted me at the door with a hug and a kiss and the pups!
I thought I might share an AI photo of him. (can't help my kids and the Guy! They are all nerds to their very cores). First photo is how I see my guy!
He's a pretty handsome guy! Take away the crown and the beard, mustache is his and this looks exactly like him.
This next photo is how he sees himself...yes, he thinks he could do manly-shampoo ads or "tastes like real butter" commercials!
This beard might be his. The color of his hair matches but it hasn't been this long since the '70's!
Bottom line: I just love him! He's my rock!
Happy Winter Soltice! Merry Christmas! Blessed Yule!
Happy Holidays!
