Monday, Visit with Dyspnea specialist Dr.Susan Jansen
She spent a generous amount of time with me (almost 2 hours) and I actually learned quite a bit. I was impressed by her knowledge of pulmonary mechanics and the neuro-mechanisms of dyspnea . Because she knew I was an RT by trade, she was able to speak in highly technical and clinical terms, which I think made the conversation easier for the both of us. We talked a lot about “dynamic hyperinflation in asthmatics” ( which I suffer from constantly), and how to better deal with the problem. She taught me some really cool imagery and relaxation techniques that I can try when my dyspnea levels get out of control. She also brought me up to date on the latest happenings in the world of asthma/dyspnea research. I think what I liked the most about her , was her enthusiasm in this under-researched field, and the fact that she completely understands and supports my my desire to push myself to extreme physical limits … regardless of the perceived consequences! She believes that people with severe lung disease, even brittle asthmatics, should do what they want and not worry about about their breathing (using common sense of course.) At the end of the visit, she put together a basic asthma care plan for me, which was pretty much the same as previous versions from other doctors..
Tuesday, Lab tests
No doctors or scientists today, just an xray of my neck and some misc blood tests.
Thursday, Follow-up visit for the SOB self-management research program.
This was my final follow up and graduation visit for this 12 month study, and I’m happy to report that I surpassed my earlier PR’s and set a new all time record in the following tests:
* 6 min walk test ( which is actually 5 minutes if you deduct the turn-arounds), I walked 2,256 ft!
*Arm lift test, I completed 121 reps in 1 minute!
*Treadmill endurance test, I maxed out the timer and made it to the 16% grade level without tiring out.
Lastly, I blew an FEV1 of 43 % for my post bronchodialator PFT, which is the best Ive done in an entire year!
Because I’m such a unique specimen, we discussed the possibility of me signing up with a severe asthmatic volunteer research network. Apparently there’s shortage of severe asthmatic guinea pigs in the United States, especially those who are as weird and physically fit as I am. Most of these research studies involve invasive procedures , like bronchoscopy and biopsies, but the compensation can be in the thousands of dollars.
Friday, Neurology appointment
Lastly, to cap the week off, today I saw a Neurologist regarding problems Ive been having with my right hand. For the past year or so, I’ve been having numbness and tingling on my right side that started in just a couple of fingers, but has now progressed all the way up my arm to my shoulder socket. I still have a lot of strength and can grip things , but I at times I cant feel what Im gripping. Its probably just a pinched nerve in my shoulder or spine, but because Ive had so many arterial lines placed on that side, I wanted make sure that my ulnar or radial nerve ( the main wrist nerves), weren’t damaged or that something more serious isn’t going on. As it turns out, its definitely a nerve problem , but they wont know exactly what kind of nerve problem until they do a nerve conduction test and electrical shock test ” EMG” which is scheduled in a couple of weeks……It’s always something huh!
Glad to hear all your medical tests went okay…I have a week of testing coming up..Monday is the Derm for my MRSA skin, Tuesday is the Heamo doc for my spleen and when I find out if the raised lymph nodes in my chest are from cancer or part of the BA, probably need a biopsy for that…then I have a busy Wednesday and Friday and the following week Darla starts Playschool full time with Toddler Bounce on Friday and the first week back I’m at the lung specialist, Carolyn for my check up..still recovering from over doing it on holiday where I paid for it every night with wheeziness, breathlessness, pain and acheyness everywhere, but at least I got a chapter and a half of book eight written!
Hope you’re feeling okay today