Traveling for Health Care: Thoughts on SARP, UPMC, and The Family House
Posted on September 26, 2013
In my husband’s attempts to solve the mystery of his respiratory ailments, which have kept him at home for the several weeks and sent him to the ER six times since June, he decided to start looking into clinical trials and asthma research clinics. Within a few weeks of really starting to look, Chalupa had discovered, researched, and enrolled in SARP–the Severe Asthma Research Program–in Pittsburgh, PA. On Sunday, we made the trip to Pittsburgh (an easy six hour drive with a lunch stop), and this week he has participated in several days of testing and examinations.
At this point, neither of us can say enough good things about this program. It is so exciting to think that he is contributing to research that will help treat different types of asthmatics–especially people like him who are often enigmas to doctors. Everyone we met at the SARP clinic was professional, friendly, and helpful. Chalupa blogged a bit about it on his own site, and I agree with his assessments. It seems so strange to have such pleasant encounters with everyone. No one took a brief look at Chalupa’s pulmonary function tests (PFTs) and said, “Oh, look, you’re at 97% of expected–you must be fine!” even though that’s what we’ve gotten from medical staff in the past. They were patient with him, extremely welcoming to me, and constantly explained every single step of the process.
On Wednesday morning, he met with a pulmonologist who is one of the lead SARP researchers. Now that he is part of her clinic, we are hopeful that some things that have been bothering Chalupa for years might actually end up getting resolved someday. Eventually. After ten weeks of being basically incapacitated, and seven years of feeling like crap, he is ready to do anything that will improve his health and quality of life. If that means regular trips to Pittsburgh for medical care, we’re up for that.
It helps that we can stay at one of UPMC’s Family Houses while we’re in town for visits. For a rate that is about half of the local hotels in the area, we can get a room with a private bathroom, a large shared kitchen, access to a fridge and freezer, living rooms with books and DVD players, and free shuttle service to and from the hospital. Everyone we met there–staff, other patients, and families of patients–was friendly without being nosy. (Okay, well there was one nosy guy, but he was an exception.) We were a little put out by the pillows that made us both sneezy and stuff, but generally the place was clean and pleasant. There was even a bench in the elevator for folks who need a little rest on the way to their room–which comes in handy when you’re traveling with a severe asthmatic!
Chalupa’s next appointment is in a month. They were going to do a bronchoscopy this week, but decided it had not been long enough since his last hospitalization in August. Instead, they are postponing the bronchoscopy until the pulmonologist he saw on Wednesday has a chance to get to know him and his asthma better. He and I are both thrilled with the prospect of getting some long-awaited answers to why he is so sick all the time and what we should do to fix it.