Home SafelyMarian and I arrived home yesterday afternoon, a bit frazzled, but otherwise in good order. We met a few sprinkles along the way and the usual "hurry up and fix it" late season road repairs and construction projects, but the roads were good and the weather cooperative. I drove from Rochester, MN to Ashland, WI, when sudden neuritis pain in my right foot and ankle reminded me to share the chore. Marian drove the rest of the way. It was a pleasant return trip. We searched the radio for "oldies" stations and played CDs. Marian sang along. I tried (who wouldn't?) and spent a good deal of the time coughing. Bombastic Elwin has become Whispering Mick...
Redux?We're not yet certain when I must go back to Rochester. We would very much like to put off another trip until February. I have to return in late February or early March of 2013 to celebrate the second anniversary of my blood and marrow transplant with a bevy of tests, evaluations, and consultations. However, the doctors at Mayo Clinic are a conservative group and may require yet another visit before the end of 2012. That decision will be forthcoming.
What's So Special About 27%?Back in June, they discovered that I had ~27% lung capacity remaining. During my emergency visit (first week of August), a pulmonary function study showed a slight decrease to between 27% and 25%. The PFS done on September 19 showed my lung capacity had increased a little...back to the 27% of the June test — but no better. The working diagnosis now is bronchiolitis obliterans, probably as a result of chronic Graft versus Host Disease (cGvHD). The rapid loss of lung function that happened between February 2012 (67%, I believe) and June (the 27% figure), seems to have stopped. That's the good news. The bad news is that, most likely, what I have lost is gone. However, as my doctor pointed out, there have been cases where a few patients have regained some measure of lung function through exercise and perhaps, through pure stubbornness.
The stubbornness part, I have down to a science.
While I am busy working for, and praying for, yet another miracle — my focus must remain on NOT permitting another insult to my lungs — the very kind of thing that might reactivate those renegade T-cells, starting another round of lost lung function. I can still function, in a limited fashion, at 27%. Below that, supplemental oxygen may become necessary, and chances to get out and walk become scarce. Normally, winter is one of my prime times for road-walking. At this point, I don't yet know how very cold air will affect my new normal. I may be looking for a used (or very inexpensive) treadmill this winter. Time, and lower temps will tell.
Intrepid — Again TodayThe cool air this morning was welcome as I restarted my daily constitutionals — walking my .75 mile track (a six-block rectangle) in about 30 minutes. I know that sounds incredibly slow, but from my perspective, I was ready to shout, "Meep! Meep!" Brandishing an adjustable aluminum cane, I cut quite a dapper swath...toddling about the neighborhood.
5 — 6 — 7 — 8: Inoculate, Inoculate!One last minute decision was a really positive result of this last visit to Mayo Clinic: I received round one of my vaccinations, post stem-cell transplant. I received five (count 'em five!) shots in my arms (three in the left, two in the right) for: Tetanus-Diptheria-Pertussis, Haemophilus influenza type B (Hib), Hepatitis B, Pneumococcal vaccine, and Inactivated polio. They recommended I wait on the Influenza (flu) shot until about mid-October, so that its limited effectiveness could span the worst of the "flu season." No live viruses are permitted, so the shingles vaccination is forbidden.
Will I get the full benefit of these vaccinations? Not likely, because my immune system is so compromised. However, they judged that that benefit was worth the risk.
A few changes have been made in my medications, mainly to help get me off the prednisone (slowly) and stop a cough which was likely triggered by one of my blood pressure medications. My numbers: the results of my blood tests, etc., all look very good. My blood pressure has been well within target range, and my blood glucose has been good — despite my continuance with prednisone.
FacesI am a bit slow sending out this update — we came home last night. Prior to this visit, I read all the literature provided to all BMT recipients by Mayo Clinic, and more, about BMT, the process and the prognoses. I know the numbers...we all know the numbers. This last visit, however, put some familiar faces and fond memories on those numbers. One of those faces...a very good friend...died in August after two failed transplants and a valiant fight. I guess I have been dealing with that, as well as the other changes leading me to my new normal.
Thank you all for your prayers and good thoughts. I cannot tell you how much they mean to us.
God bless and good night,