Monday, June 22, 2009

HCMA meeting

A few weekends ago we flew to Morristown, NJ to attend the annual meeting of the Hypertrophic Cardiomyopathy Association. This is a patient advocacy group that hosts a meeting each year where patients can mix with the leading experts in the field who study HCM and other health care professionals who attend to get continuing education credits. The academic content is top notch, but the most interesting part is the relationships forged between the HCM patients. Information is exchanged, along with war stories of dealing with hospitals, insurance, employers, classmates, family, and the rest of humanity. The picture shows us with Emily's all-time favorite doctor, Marty Maron and his assistant Murdena Mills. Way back at the beginning of this blog is a picture of Marty and Murdena visiting Emily in the ICU three days post-surgery, when her cheeks were puffy with steroids, her hair was greasy with unmentionables, and her eyes glassy from narcotics.

What a difference a few months makes! Her biggest trauma this time was that the hotel threw her out of the bar for being underage. True to form, the President of the HCMA, Lisa Salberg, intervened on Emily's behalf. Lisa has forcedCongress to pass legislation to make genetic discrimination illegal, schools to install AED's (Automatic External Defibrillators), and insurance companies to support travel to Centers of Excellence that she forced hospitals to set up, so a rule in a hotel was no match for Lisa. Her greatest victory of course was to get Marty Maron to take Emily on as a patient just two years ago and see her on a Friday night after hours so that Emily got the care that saved her life. Consequently Emily got to hang out with the doctors and patients until they threw us all out of the bar because of the arrival of a bellicose wedding party.

Our moment came when Emily participated on a "Patient's Panel" about heart transplants. In concise, clear, and straight-forward language she explained how she felt when she was diagnosed with HCM and had to get an ICD, and then how she felt when she was told she needed a heart transplant and had to deal with the waiting and then the surgery. She held her audience of 250 spellbound, and her parents were mighty proud.

Thursday, June 11, 2009

Good heart, bad parking

We took Emily in for another follow-up visit and heart catherization/biopsy. The procedure went very well, and the results were excellent. She had another 0 score for rejection and her blood tests (C4D and PRA) were both negative. The echo looked good, as did the pressures in the heart.

She is very busy finishing up the school year and preparing for final exams. She does not seem to have the stamina to do a full day of normal activities, but she has been working really hard at preparing for her exams in 3 courses. Although it is a relief to be worrying about normal things like exams, it is frustrating for her to be doing it with low energy and working around things like heart biopsies...

Our big problem with the visit to Children's this week was that someone broke into our car overnight in the parking garage. They stole our GPS (bye, Charles) and also Emily's backpack with her notebooks and calculators for school in it. Grrrr. How low is that? Stealing things from people whose kids are sick enough to be overnight at Childrens...

With the help of security and Harvard Univ police, and Boston Police, we recovered her notebooks. We called the glass guys who were able to repair the smashed window the same day, so we were still able to get home that night after the biopsy. Jeff ran out and bought new calculators, so Emily was tired but good to go back to school on Wednesday.

We are now on a monthly clinic schedule for the summer. We are really looking forward to seeing friends and family in the next couple months. Emily still has two courses to finish up over the summer, but it will be nice to have a new schedule and some more down time.