University of Michigan

[PostFamily]

Has anyone been to U of M to the Peds Cardiology (or Adult) HCM clinic? Is anyone familiar with Dr. Mark Russell? Just wondering as we hope to have 13 yr old David seen in September. It seems like forever away!

[macbeth]

My three kids and wife were seen at the University of Michigan pediatric and aduly cardiology clinics for about 25 years.

In general, the pediatric cardiology unit is excellent. They have a high turnover rate, but if you find a good doctor, they really do a good job (we averaged a new pediatric cardiologist about every three years, which complicated continuity of care). I don't know Dr. Russell, but Drs. Roccini (sp?) and Rosenthal were excellent.

I can't comment on the adult HCM clinic, that is a relatively new clinic at UofM (it started about 4 years ago).

Be careful about any in-patient services at the Mighigan hospital. They are a teaching hospital, and they give their doctors-in-training a lot of latitude, particulary outside normal office hours (e.g., in the evening and at night). I won't get into details, but we had several bad experiences involving resident and fellowship cardiologists who didn't understand HCM and/or were unaware of previous test results and directives from the pediatric and heart failure cardiologists. After the last incident we shifted to the Cleveland Clinic (primarily because the kids had reached their teen years and didn't really trust UofM anymore.)

I generally dislike postings that are negative, but I suspect there aren't a lot of us in Michigan with kids with HCM, and since kids are involved, I made an exception here.

[Michelle C]

My family went to the U/M HCM center in Ann Arbor last August. We met with Dr. Day, Linda Baty RN, and a genetic counselor. My 16 year old was seen the same day in the pediatric cardiology department by Dr. Russell and Dr. Bradley for evaluation. He then had an ICD implanted in October by Dr. Bradley and is doing great. We saw Dr. Russell twice since Oct. and have grown in our confidence with his management of our son's care. He is not an HCM specialist per se, but has other pediatric HCM patients and consults with Dr. Day when necessary. Dr. Bradley, who did the surgery, was excellent with explaining ICD's to us. He spoke to our son in words he understood, brought in actual devices to show us, and had a great rapport with our teen boys. He gave us the facts, but kept things upbeat. He went above and beyond to answer my many questions, and checked on our son at night and early in the morning before discharge.

I would say we are very satisfied with our care there at this point in time. Both physicians or their staff were quick to respond to our calls and emails. Our son just turned 17 and we are told he can stay under Dr Russell's care indefinitely. We did have our son initially evaluated in Minneapolis with Dr. Barry Maron. It was his recommendation, with some discussion and debate, that was followed at U/M.
Good Luck!

Michelle

[PostFamily]

Thanks for the info from both of you. I know how important it is to be your child's advocate. One must always be on their toes, ask questions and get the answers. I have a slight advantage of having worked in the medical field for 22 years.

[PostFamily]

David's appointment at U of M is Friday, Sept 4th. I am very anxious, nervous, scared, excited, want to go, don't want to go.....I know I want to meet with an HCM specialist to get the most up to date treatment for my son. At the same time, it is scary. What I want most to get out of this visit is some guidelines for activities. I want David to lead as normal of a life as possible without putting himself in a dangerous situation.

[Mydogking]

I saw Dr. Day and Nurse Baty there on August 21st and I was amazed. My only regret is that I did not go sooner. They were knowlegeable, compassionte, wonderful at explaining everything.
One of my biggest reason for wanting to go to the clinic was to get some guidelines once and for all as to what activities I could do, and what I should avoid. They were very good about explaining everything and making recommentations.

[Linda]

Welcome to the HCMA - if you have not done so, please call the HCMA office to learn about additional info available. Also, consider introducing yourself in a new thread - many will want to welcome you and learn more about you.

Best wishes - Linda

[bmerritt]

I found out that I had HCM while I was studying abroad in New Zealand in 2008. When I came back to America my primary care has been at the University of Michigan. I cannot think of a bad thing to say about them. Dr, Day has been my doctor and as provided me with gold standard care. Even though I am no longer living in Michigan I plan to always go to the U of M HCM Center no matter how far away I live.
Brad

[LindaSo]

It is always a good thing to have an experienced HCM MD direct our care. Those tht I have spoken to that have gone to that HCM program have been very pleased with the U of M program.

Linda

[Nellah17]

Dr. Day and her nurse are truly wonderful! As their patient, I can say that they truly turned things around for me. I am feeling much better after my myectomy - they offer the gold standard of care.

I've been to the other places because of convenience - it's never been worth it. They are the best, hands down.