It seems like that was the point in time where I finally began to show and feel slight improvement and concerns of, well you know, began to temper. By the end of the week I was off the diabolical oxygen mask and on to the Big-Bore model again. That was a red letter day, I took the stupid mask I absolutely loathed, tied it up in a noose with its own hose and hung it in effigy under my TV, which I was actually watching a few hours a day by now.
I had turned the corner as each day was just a little better than the last. A few more days and I was down to the standard oxygen thingies and walking about 25 feet down the hall and back. And five days later I was oxygenating on my own without help and the I.V. antibiotic load was down to a scant eight hours a day. It was New Years Eve day and when the docs checked up on me they decided that seeing as I had already spent Thanksgiving and Christmas in the hospital, it might be good therapy for me to be home for New Years.
So home I went, weak and wobbly barely tipping the scales at 160#, 32 pounds down from what I was after SEMA. It's a weight reduction program I really don't recommend as I needed two hands just to hold a full cup of coffee. I also received my “Drugs To Go” box and had to continue I.V. antibiotics three times a day plus some pretty potent oral antibiotics. Home infusions, that means that Flo and I were back together again. It's nice to have company.
Because of the Holidays and doctor's vacations I couldn't get scheduled back into Mayo until mid-January. When I finally arrived there they found that the super aggressive therapy of steroids and antibiotics had cleaned up most of the infection and there wasn't enough for them to get a lung biopsy at this point. So their solution was to reduce then stop the antibiotics, leave the steroids and do a panel of blood tests in a month. A month later I was improving so we started reducing the steroids. Things were going pretty well then all of a sudden in March - I started getting sick again. Arrg!
This is where I finally had some good luck for a change. A good doctor friend of mine from northern Indiana very concerned insisted that I see one of the top Pulmonary Docs in the country who he knew personally and called on my case, who just happened to be at the IU Medical Center in downtown Indy. Gee, that's a bit handier than Rochester, Minnesota and IU is where Lance Armstrong was treated for cancer, so I went.
He told me at that time, pulmonary functions were down but acceptable. And that there were still scattered infiltrates and scaring in my lungs but nothing large enough or solid enough to go in and grab a piece for biopsy. He did however want me to see another doc in the IU Med Center who was a leading edge Hematology/Immunology Doc –I went in the nick of time.
Remember I said that I was getting sick again. Well I was but this time armed with previous knowledge, rapid reaction and the fact that my only job right now was focusing on my health – I did get sick but not as sick as before and NO hospital this time. That's the good news, the bad news is when I get sick, its 8 - 12 weeks of lots of antibiotics and huge steroids doses to get better, but at least they're oral antibiotics -- sorry Flo.
The IU Docs are fairly confident that they will eventually get to the bottom of all this and get me back to normal. The only hang up is they say I need to be patient as this may take a while. Great, but what else do have to do. It's the “be patient” part and slowly recovering that's killing me. Come on, it's been over eight months now. Green flag! It's time to go – boogity boogity, boogity. (It must be those damn speed-genes in my DNA.)