medical contacts
As you look at these medical contacts please keep in mind the most important choice you will make is who will be your doctor. One that is very knowledgeable is crucial and experience is definitely a plus. But, more than that you need a doctor who demonstrates compassion for the patient and the family. My daughter was the patient of one doctor for four years but when the end came he was nowhere to be found. Never a visit, never an email, never a card…nothing. I will never understand that. So, choose wisely and remember you pay the doctor. If you are not happy with the care, move on to the next.
Try to choose a doctor associated with a large hospital such as one that is part of a university. Preferably one that has a good reputation in the community. Go online and read reviews that people have written, as this is always helpful. We ended up a little over an hour away from home which was doable.
California
Stanford Healthcare – HCM, Stanford, CA
https://stanfordhealthcare.org/medical-clinics/hypertrophic-cardiomyopathy-center.html
-Specialize in the care of patients and families with HCM.
-Genetic profiling
Colorado
Children’s Hospital Colorado, Aurora, CO
-Their team of pediatric heart experts helps treat kids with cardiomyopathy and those suffering from heart failure. They offer treatment options that are individualized for each child, with a strong emphasis on quality of life.
-They utilize the most state-of-the-art devices used to support patients with end-stage heart failure.
Georgia
Emory Healthcare – HCM, Atlanta, GA
www.emoryhealthcare.org/hypertrophic-cardiomyopathy/index.html
-The only dedicated HCM clinic in Georgia.
Minnesota
Mayo Clinic – HCM, Rochester, MN
www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/home/ovc-20122102
-Second opinion
-Genetic testing
New York
Mount Sinai Hospital, New York, NY
-Specialize in the treatment and management of patients living with mild, moderate, and advanced congestive heart failure.
-They implanted 28 year-old Daquain Jenkins with the SynCardia temporary Total Artificial Heart in August of 2012 while he was awaiting a heart transplant.
NewYork-Presbyterian/Morgan Stanley Children’s Hospital, New York, NY
-Pediatric Heart Transplant Program specializes in transplanting children with end-stage congestive heart failure due to cardiomyopathy and children with complex congenital heart disease who are not candidates for palliative or corrective surgery.
-They have set the standard of care for children with end-stage heart failure achieving 84 percent overall long-term survival after hospital discharge.
-They stand at the forefront of pediatric heart failure research, including investigations of new strategies for post-transplant management.
North Carolina
Duke University Hospital, Durham, NC
-Second opinion
-Heart transplant – Duke has three times more experience with transplants verses the university hospital that was treating my daughter. Look at the statistics. Ask how many transplants they have done in the previous year. With a surgery of this caliber, you want the most experience you can possibly get. Also, check with your insurance plan. Some will cover 90% of travel and expenses. Find out if the hospital you choose for transplant is in network or out of network.
-If doctors have told you transplant would be necessary, please push for sooner rather than later. If weight begins to drop and body mass index goes down, they will not transplant. Some people have plenty of weight on board and it is not an issue. Not the case with my daughter who was small to start with and the weight loss was very detrimental to her.
Ohio
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
-Jeffrey Allen Towbin, M.D., Executive Co-Director, The Heart Institute
Professor and Chief, Pediatric Cardiology
Cleveland Clinic – HCM, Cleveland, OH
https://my.clevelandclinic.org/services/heart/disorders/hcm
-Cardiovascular medicine – adults
-Pediatric cardiology – usually 18 years and under
Texas
University of Texas Southwestern Medical Center, Dallas, TX
www.profiles.utsouthwestern.edu
-Dr. Mark Drazner – Dallas heart failure specialist. He is the medical director of the Heart Failure, LVADs, and Cardiac Transplant Program.
-Specialize in the care of patients suffering from advanced heart disease.