Yesterday morning I had an interview for the Patient-Family Advisory Committee at BIDMC (Beth Israel Deaconess Medical Center). Essentially members give comments/suggestions in an effort to improve the hospital and patient care. Being the all too seasoned patient that I am at BIDMC, I have many suggestions. Having gluten-free food available in the ER for those with Celiac Disease so we don't have to endure a hunger headache or eat the regular food. Extending the hours of Health Care Associates (HCA), the primary care office to include weekends and later weekday hours for those with colds, urinary tact infections, ear infections, belly pain, etc so they can be treated faster and not wait in the ER for hours on end while risking spreading their illness to others. I also think the kitchens for inpatient food service should stay open longer, at least past 7pm. When I was inpatient in November I had been sleeping for most of the afternoon and when I went to order dinner at 7:30, which seemed like a reasonable time, I was told the kitchen had already closed. For dinner I had a sandwich on wheat bread. It does not make sense to not be able to receive gluten-free food past 7pm at the same medical center where I was given the diagnosis of Celiac Disease.
Interviews are still going on, but I expect to hear something before the first meeting in September.
After about 10 minutes in my apartment I had to call a cab for my 2:00 appointment at Spaulding Rehab, also in Boston for a second opinion regarding the Baclofen Pump saga. The taxi was late to arrive and I arrived at Spaulding at 2:17. (I would have taken the T, but I didn't know exactly where the orange line T stop was in relation to the hospital so I decided to play it safe and take a cab.) Thank goodness the doctor was running behind or else I might have to reschedule. Normally I would not mind rescheduling, but since I have the Baclofen trail in PA next week, getting another opinion post-trial would be backwards. I waited for about an hour before I was seen. Thank goodness for my Kindle. Long story short, I really liked the doctor and he agrees that a trial is a step in the right direction. Hearing Dr. L describe the abnormal muscle tension in my left leg and foot using spasticity and dystonia, words that I have always used myself to describe it, but words my neuro at BIDMC always challenges and refuses to use made me realize how stressful the doctor-patient relationship is. I see my neuro at BIDMC on 8/17 and if he has not changed his ways, he will loose me as a patient. Dr. L gave me his email address and I will write to him during the trial in PA.
I need to have two doctors and two rehab hospitals managing my care because even though I spend most of my time here in MA, I still go to PA every now and then because my parents live there. If the trial works and I like the results I get from it, I will likely get the pump implanted, but I would rather feel comfortable with the doctors who manage my care in both states before I have life changing surgery. I asked Dr. L if they implant Baclofen Pumps at (MGH) Massachusetts General Hospital, but he said only (BMC) Boston Medical Center and Brigham and Women's Hospital implant pumps. If the trial works and if I then choose to get the pump in MA, I would likely get it at Brigham since I have been there about three times for appointments.
I left Spaulding at around 4pm, called a cab and went straight to (CHB) Children's Hospital Boston. (It only occured to me just now that I spent the entire day in a hospital.) While these past few weeks have been crazy from the Child Life conference and monumental fall in AZ, to the wedding in PA, and the various appointments I had in Philly, I haven't been able to volunteer. This coming week I am leaving for PA for the trial in Philly and a visit to Pittsburgh to tour Children's Hospital Pittsburgh and meet with the child life director. Even though I volunteered 4-8pm (I typically work from 2-6pm), it was nice to be back in my element after being away from it for awhile.
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