Tuesday, November 28, 2006

Thanks Giving

I am exceedingly grateful this year.

We spent Turkey Day at my sister's house. My brilliant four year old nephew was greatly entertaining. He is now addicted to NASCAR, and announced that at his preschool, he was the "speedist."

Thanksgiving dinner included us, my sister and her husband and their brilliant son (and their pending one, who the nephew has named "Soonyouwah" for no apparent reason), and my brother-in-law's youngest brother, mother and her fiance. We had a small turkey, a turducken, dressing, fresh sweet potatos baked in peach butter, and pumpkin pie, strawberry rhubarb pie, and a bread pudding made from Pascal's Manale's recipe. With whisky sauce. Made with Dr Jacques Daniel's formula.

My brother and his lovely wife and brilliant daughters stopped by Thursday morning on their way to her family gathering, and we joined them at a family home nearby for a re-hash on Friday evening.

Traveling with Pulmonary Hypertension is like having an extra person. I have one bag that's full of nothing but drugs and treatments, and the oxygen that goes with me most places. I really, really am feeling much better than I was last year, but it takes a lot of doing to maintain it. It's easy to lose things in the midst of it all...

We left to come home on Saturday, and I left my phone at my sister's house, and one of the cleaning baskets for my nebulizer.

Sunday we took the Jaguar to get a tune up so I could drive my husband's car while he was in Carmel by the Sea this week (did I mention that I hate him?). Monday morning after he was winging his way west, I discovered that he had the only key to the car in his pocket.

No car.

No phone.

Fortunately, even for a crip like myself, we have some good restaurants and little shops in walking distance, so I was not desperate.

I took a cab to the dealership to get a new key for his car. Key didn't work. His locks are too old and worn for a newly cut key.

I took a cab to the repair shop to get my car. Jaguar tuneups are in a class of their own expense-wise...

I've spent over $70 on cab rides so far this week.

The phone came in the mail today.

Phone. Car.

Life is good again. Or at least manageable.

Tuesday, November 07, 2006

Mea Lazy

I'm lazy.

I should have added much information to this, but I have been negligent. Mea culpa.

We went to Philadelphia this weekend for a Pulmonary Hypertension symposium. Lots of docs and researchers talking about where treatment is going and what we can expect.

We stayed in a very nice little Hilton in a neighborhood with which I was not familiar, near St Joseph University. Nice restaurant, not grossly overpriced, nice paneled bar with overstuffed leather armchairs.

I had some friends who also attended. Some I had met in the flesh before, some only online. All were delightful, which is kind of a bonus because I have found that meeting folks with whom you have only corresponded is sometimes a, well, disappointment. They write better than they are.

Me, I write how I are.

One of the things that is increasing apparent about this disease is that there aren't any guarantees. I'm feeling great now, and taking as much advantage of that as I can, but the meds can quit working, or the disease can be accelerated by any number of things. My chances are better because the treatment is better. A woman died this weekend, five years after diagnosis, and her doctor had chosen to put her on only one medication, changing it too late for there to be much improvement. When she was diagnosed, there were only two treatments, both of them intravenous infusions. Now we have three pills and an inhaled treatment, in addition to the infusions.

Currently the most common treatment is a cocktail of several of the available treatments, adjusting the dosages to minimize the side effects, but jacking the dosage up as high as is tolerable to minimize the symptoms. They think that by this time next year, there may be as many as five new treatments. And in Canada, they're starting a stem cell infusion clinical trial this year.

The trick is staying alive long enough to get a cure...