Mayo Clinic reports state my Chronic Myeloid Leukemia with lymphoid blast crisis and subsequent chronic phase remains in complete morphologic, cytogenetic, and molecular remission.
I love it when they talk medical!
Five years ago today, doctors and nurses at Rochester Methodist Hospital opened up my Hickman Catheter (the true way to a man's heart) and delivered two bags full of golden stem cells and redneck T-cells (complete with tiny flannel shirts and Doc Martins) from my brother, Kevin. Two important things happened: I received a gift of life, and I smelled like creamed corn for three days.
All of my kvetching and sharing since that date aside, my second chance at life happened then, and there. So I celebrate today with this quick update and maybe a little chocolate ice cream later. Life has been challenging since I started down this road, but it is life and it is a miracle, each and everyday as I wake up and realize I have another day to spend with family and friends.
Just sharing the joy and thanking you all for your prayers and good thoughts!
Tuesday, February 16, 2016
|How can I smell a rose, |
with a hose in my nose?
Guess who didn’t pass this afternoon’s test? My doctors were unwilling to simply accept the “one-off” results from yesterday, so today the Mayo Clinic giveth and it taketh away. My arterial blood gasses test this morning revealed my O2 at 88.2%. Uh oh...
So, they put me on a treadmill and tested my oxygen saturation under dynamic stress. Under moderate stress and load (walking quickly uphill) I dropped below 87% and all the red lights and beepers went off at once. It seems I now need minimum oxygen when in motion.
The nurse/technician explained all the dangers of the 88% drop off, including heart disease, organ damage, and risk of injury. I guess I have joined the oxygen for lunch bunch. At least, I don't need O2 when at rest. I maintained quite well when sitting still.
Also, they were concerned about my travel home in an unpressurized plane without portable oxygen. Next time you see me, I will likely be sporting my new nasal cannula. (Not a fashion accessory!) The only company available to me, Lincare, provides the portable oxygen concentrator only for the flight. Otherwise, I will work with a home concentrator and 2-hr bottles of compressed O2.
It seems that once again my life hands me wondrously ripe fruit (a curable infection, not a worsening of my underlying lung disorder) with a nasty, little worm in it (a 50 ft. plastic worm called cannula). I can take heart from this bit of wisdom from the Lincare web site: “Patients may live for years on home oxygen.”
It shall be my goal to improve to the point where I don’t need the supplemental oxygen. BTW, that concentrator? It sounds like an old asthmatic gasping for breath…
Mick, with a hose in his nose…
Posted by Mick at 9:14 PM
Monday, February 15, 2016
|I made it to Gift of Life!|
I made it! Rochester Methodist discharged me to stay at Gift of Life Transplant House until I can connect with a Lifeline flight to home. As usual, it took nearly an entire day to get all the permissions, files, and red tape in order. And as usual, I had to stop at the Eisenberg Pharmacy to fill four new prescriptions that cost an arm and a leg. Just like old times!
They tested me today, to verify how much supplemental oxygen I will need. Well, I had a real surprise for the respiratory technician and the doctors -- my O2 level stayed up, even while exercising in the hall (walking in circles, etc.). Because it did not dip below minimum and recovered almost immediately, I do not qualify for supplemental oxygen at this time!
Tomorrow, they will test me once again. They want to be certain (as do I) that I won't get into trouble flying around in an unpressurized plane on the way home. So, I go back tomorrow for outpatient blood tests (with ouchy copays and deductibles) and outpatient pulmonary tests. I have also had word that my physicians in Hancock have requested to see me ASAP. Lord, I am a popular fellow these days!
In any case, I am resting in my room and breathin' easy. Your prayers and good thoughts sustain and raise me up.
Good night and God bless!
Posted by Mick at 9:13 PM
Thursday, February 11, 2016
Early AM Impressions: One would call it morning, if one had a job and a place to perform. In a hospital room, it is merely dark, with a slight shading of anticipation -- or maybe that’s fear raising its standard on the daily battlefield.
I still feel as though poised on the edge of a sword, balanced against the awful coughing on one side and the gasping for air on the other. I desperately want to get better, and return home to a new pile of arcane bills from this place for series of fantastic tests and magical medical methodologies that discover the hidden reason I feel like I’m breathing from the bottom of a pickle barrel. Yet, my focus is drawn elsewhere...I remain fascinated by performance of staff here.
The efficiency of the new breed of medical personnel and their technology is frightening. Electronic sensors in my room detect if I have risen for any reason, and they can swoop in to gather their blood samples and status data quickly, all the while looking exceedingly cool and collected. The newbies are nervous and the long-suffering veterans appear resigned to the new paradigms. All is watched. All is measured. All is evaluated.
When they are not in the room, all is silent...
I sense that, underneath the nervous competition of the younger medical staff and nursing personnel, there remains something of the true calling I have found so evident in my conversations with, and in help from, veteran nurses and doctors in the past. Not everyone is altruistic, of course, but this is not a profession you choose because you want excessive free time, or a lot of money for your services. Oh, some doctors may do quite well, but for the most part have expenses to suck up all traces of salary and it takes time for the investment to pay off. Nurses, on the other hand, tend to be paid from the shallow end of the money pool.
As I was wheeled from the air ambulance into the local ambulance, I noted that the joviality of the fellows transporting me from Calumet to Rochester was not entirely shared by the transportation staff on the receiving end of my Hail Mary pass from Keweenaw to Mayo. The guys from Up North were garrulous and fun, yet ruthlessly professional. The guys from Gold Star were professionally pleasant, or maybe just professional.
As I was wheeled into the hospital, the images of the marching throngs once again saturated my view. Hundreds of staff, mostly young, were mostly dressed in either nursing uniforms or in the ubiquitous suits worn by doctors everywhere on campus. Mixed in with this wellspring of professionalism are the earnest faces of the lost ones. These people are patients and visitors with a purpose, but also a heavy dose of uncertainty. All look bewildered or bemused. Chief among the bewildered and bemused is yours truly, riding his magical gurney into uncertainty.
Thanks for the prayers and good thoughts...More to come...
Posted by Mick at 7:34 AM