follow ups and biopsy recovery

April 16, 2011 at 8:06 pm

When I first started IVIG in late 2008 I had the 5 days loading dose followed immediately by a follow up visit. Then I went to 2 days once a month for 5 months with follow ups at the local MDA Clinic (same doctor) monthly. Infusions were stopped at 5 months as “ineffective with too much risk of death and infection from ivig.”

Following my first visit to Mayo Clinic Minn. oh, about 1,500 miles away, I returned at 6 months and then 1 year. I believe my own, and my wife’s (which is better) subjective opinion of my condition would have served us well to insist we go more often.

I did write to the Mayo doctor and received a call from Mayo to return sooner. Next follow up in Minn. is after my six months of once per week infusions.

At UCSD, La Jolla, Ca. I would have returned after 3 months. Would have, because I canceled that appointment to go back to Mayo. In this case, I deteriorated rapidly in only 3 months on 3 days every 3 weeks.

First trip to Mayo my wife and I drove, with the camping gear in the car. The next two trips I flew on SWA to wherever their nearest discounted fare was and then rented a car. If I had to drive by myself 300 miles, or more, it would not be a good idea. I would be forced to fly to the local airport in Rochester or, at least the Twin Cities.

I have decided to keep the same specialist, regardless of distance. However, my local treatments are ordered by a nearby neurologist because ‘they’ will neither write, nor accept out of state Rx at the treatment centers I attend.

I had a biopsy, albeit a nerve biopsy under my arm, near the arm pit. Still, it’s an approx. 3″ incision and took a few weeks to heal up. I do not notice it now.

However, a small pre-cancerous lesion was removed under the same arm, in the same area. It still bugs once in a while. The dermatologist gave it a name that says the scar tissue doesn’t know when to stop growing!

If I had to drive 300 miles by myself, I’d find a good pie shop, or two, on the way. Then, I’d stop twice, eat pie and rest. A good reason to eat pie, right?