Back to Baltimore

Thankfully, appointments had to be changed so Mignon and I set out for a one day trip to see Dr. Mathai at 11 and Dr. Wigley at 1, this past Tuesday. I was really looking forward to talking with both of them about my condition and what lies ahead.  Dr. Mathai seemed surprised that I was doing as well as I am.  Now that I am not seeking any aggressive treatment and there is no cure, the goal now is comfort.  Might the progression slow down?  It might.  Positive thinking.  It didn't sound like we'd do any more tests, no point in that.  Dr. Mathai is an excellent doctor who tried everything he could to get me to Pittsburgh.  I could sense he agreed we couldn't pull a rabbit out of a hat.  His counsel and expertise was/is invaluable.

You know this guy has to be pretty special if I post a photo of myself looking like this!

Then, it was on to Dr. Wigley.  Once again, mapquest gave us the wrong directions but this time we were lost in the city not in the pines.  I hadn't seen Dr Wigley in months.  Another great doctor, a major player in the scleroderma world.

Unfortunately, we forgot to take a picture of us together.  But, here he is.  He's in a documentary that is now playing at the Ritz in Philly called "Project Scleroderma:  Beneath the Surface".  If you have the inclination, you can get Dr. Wigley's segment on YouTube.  Just type in name of film.

Anyway, he made some medication changes, thought I could try being on my own, having someone come in during the day, at least for now.  He's had so much experience, I trust his judgement.  He agrees to forgo the transplant was a good choice.  I'm still on pallative care and considering hospice but a lot more questions need clarifications.  Don't let the words shake you up, the bottom line, of course, like everything, is $$$$$$.  That's not to say I don't have more decisions to make.  Slow and steady.  Breathe.  Wigley and Mathai, along with my nurse, Theresa, have convinced me to go ahead now and take the xanax to help with breathing.  Maybe a bit of morphine might help.  Staying a head of symptoms getting out of control.  Again, as I tell myself, don't let the words shake you up.  These are changes that will add to maximizing the quality of my life.  It does seem scary though.  If I was 20, I'd probably be excited, getting permission to take some "downers".