Monday, 17 June 2013

The PFT went well.  The technician, Sylvie, also administered my last pulmonary function test at the Lakeshore in 2009.  She is really good at what she does, meaning that she understands the stress she puts my body under and is cautious about pushing me too far or too fast to get quantifiable results for The Dr..  She had checked her notes and she knew I was having the PFT to submit with the lung transplant application as a benchmark.  The test is conducted with you in a glass booth and the technician monitoring your breathing and cardio info in real time.  A lot of it the measurements they want are done while you fill and then empty your lungs as forcefully and quickly as you can.  From a patients point of view, other than all of the tubes, hose in your mouth, arm cuffs and the fact you are in a glass booth, it is basicly a spirometry test at the Dr's office but a little more high tech.  Last year at the Lakeshore I exhaled forcefully right into unconsciousness, twice.  I was lucky, my lungs did not collapse. and I felt myself going and I instinctively tried to roll on a shoulder. Nicole and the technician administering the test got me sitting up on the floor against a wall, the Dr. and a nurse checked me out and I was ok. vitals wise.  I did not want to go to emergency or pursue it further.  They did not make a note in my chart.  I checked later.  That fact bothers me a lot.  I passed out because I was, and am still strong enough to use my abdominal muscles along with the weaker chest and rib cage ones to crush the air out of my lungs in an instant, if I use all my force.  That is not something that the average person can do.  The technician did not know that.  She had never administered the PFT to someone who had a combination of extremely low lung function with the musculature of an athlete.  When I heard her coaching me " harder, harder, faster, faster, blow blow blow blow, well, I did.  Poof.  Out like a light.  It happened again, almost, last year when I was going to rehab.  Luckily at that time I knew what could happen and I held back a little, just catching myself starting to black out.  This time though, she was a pro.  The hardest part was getting valid readings.  My lung function is so poor that I can barely generate a measurable response.  She was able to anticipate when I was going too far, too fast and I got to trust her.  Between the two of us we were able to get The Dr. the data he needs for the transplant people.  We had a chance to talk between takes and I am so glad we did.  There was a lot of personal vindication in her words, for me.  She told me that in all the years of her doing her job she had never encountered anyone with the degree of lung illness I have who is as fit as I am.  She said I was in total control of myself and the space around me.  Zen master athlete.  She said it.  Oh my how good that feels.  I work very, very hard virtually every minute of every day to be what I have to be in order to avoid anxiety, stress, fear.  Suffocation, right now, permanent with a prognosis worsening until a miserable death. The fear of those things work very, very hard against me.  I don't sucumb to anxiety or fear of dying.  I am able to breathe enough.  I control everything, every little movement of a finger.  I get to my car and unlock the door and I might pause for a few seconds just stand in place before I sit down,  I might close my eyes mid sentence in a reply to you for a little while before carrying on.  If you try to get my attention when I withdraw to recover or avoid a breathing attack you will be ignored, I will not be aware of you at all.  With determination, and I cannot stress enough, proper rehab and training, anybody could do what I do.  That said, I was glad for the recognition Sylvie had for my effort.  It is not a small effort.  I give the effort that someone training for the olympics gives.  I know I do because I was fortunate enough to have had daily contact with a man, Doug Anakin, my gym teacher and multi sport coach, who was an olympian and was a mentor to me when I was a teenager.  I learned a lot and remembered everything.  "Walk towards the pain that's where there is gain" and many other sweet sayings get my ass out of bed at the same time most mornings and I go to work.   I go to work building me.  Making me strong.  Making me simple.  Making me happy.

Today I had a consultation with a rheumatologist that I had first seen about four years ago.  He is a young guy who really comes across as very sharp.  He was able to use his laptop to get into Lakeshore to get my bone density and blood tests.  That was rather neat.  He took a good half hour listening and making notes asking questions.  He told me "no problem" that we would be able to get a handle on bone damage.  I do have osteoporosis, a shot left hip,  a couple of crumbly discs and a few other assorted bone things.  Really, this all does not add up to too much.  If it was not for the lung disease I think I would be able to see him and take the calcium and other builders and run half marathons in a year.   So, as he pointed out, "we will manage your bones with you taking steroids".  Steroids are my friends.  Steroids are life givers.  There never will be getting away from steroids for me, transplant or no transplant.  At this point there no longer is an acceptable quality of life without regular doses of prednisone.

Wednesday, 12 June 2013

Tomorrow morning I have a pulmonary function test at the Lakeshore Hospital.  This is, The Dr. says, necessary for the lung transplant application.  They are tests I have had a number of times.  Nothing special to do to prepare for them.  Well, she did say no smoking when confirming my appointment.  No problem.  The next important test is a CT scan to measure that thing growing, or hopefully not growing. on my lung.  The Dr. wanted that done in July.  I have not heard from the hospital yet.  I will call The Dr, at the end of this week if I have not heard from them.  I want that done.  I want the transplant application to move ahead.  I want to know if and when a lung transplant is ruled out.

I went to see my family Dr. on Monday in order to get referrals to a rheumatologist I saw last in 2009 and an opthamologist who sent me for cataract surgery in 2011.  The rheumatologist wanted a new referral and I could not for the life of me remember or find anything to tell me who had seen me about the cataracts.  I really did not want to deal with bone issues but the pain cannot be ignored.  The steroids are doing bad stuff to my bones and I need the steroids to live every day.  So, next Monday and Thursday I see those two Dr.'s and see what help that might bring.

I try not to think very much about the future or all of the things outside of my control.   I will write more about what I feel in the near future.