Stanford Medical Center--HCM CLINIC

[FennieMac]

Both husband and daughter have been seen by Dr Ashley and his assistant Heide Salsbury in the last month. Both had cardiac catherizations (a real father/daughter first) on the same day.

The clinic opened in 2006. Curious minds want to know the month. Was it January or was it September? Are we the first family they've treated and is that why I can call Heidi and SHE answers the phone? No playing phone message tag. It is wonderful.

Has anyone else been to Stanford? I feel like we're in good hands and am go grateful we don't have to travel to Minneapolis for treatment.

We stayed in a cool little 1950's retro motel.

FennieMac

[nettibug]

Has anyone else been to Stanford? I feel like we're in good hands and am go grateful we don't have to travel to Minneapolis for treatment.

We stayed in a cool little 1950's retro motel.

FennieMac

hi fenniemac,

i have spoken to heidi multiple times since getting my diagnosis by a non-HCM cardiologist. i am scheduled for tests and appointments all day this tues/thurs at stanford. heidi has been great, and i am grateful to have (albeit fledgling) clinic so close to home.

fenniemac and any other HCM'ers, please let me know if you are in the area and need ANYTHING! i am in the bay area and happy to help!!

netti

[FennieMac]

Thank you for your offer of help.

Sara and I lived in Lafayette for 4 years while she attended a private high school for children with Asperger's Syndrome and Non-Verbal learning disabilities. She graduated in June, class co-valedictorian (they tied). Now we are all living in Davis. All 3 kids have moved out (although Sara is staying in our granny flat. It is wonderful to feel like we've raised our children and it is time for us to be a couple again. With the huge expense of keeping 2 houses and the tutition now finished, we're trying to remodel our house.

The trip to Stanford is only an hour and a half without traffic so we try for 2 or 3 pm appointments so we get through the city early enough to miss rush hour which begins about 2:30. Then we drive home in the evening.

A list of Sara's needs is heartbreaking. She pushed herself to finish high school and with her grades she had a lot of pressure to go to college. She must have known she wouldn't have the stamina and simply refused. She is a bright girl with few friends in town. Even with friends, she doesn't feel like doing anything. She has fibromyalgia which zaps her stamina. She is depressed which makes her tired. She has Asperger's syndrome so making friends is not easy and frankly, friends require energy. Her heart pressure increased in 2004 when she had a bout with aplastic anemia (so I'm interested in the member whose family has anemia and HCM), that resolved itself--probably a reaction to a medication and by 2/05 she no longer needed the evaluation for transplant at Stanford.

There was unusual stress this summer and the pressure (Sara said gradient,(the doctor corrected her but I'm not sure what is meant) went up to 65 again. By the time we saw Dr. Ashley and Heide, it was done to 35--to low to be on a transplant list.

I feel hogtied because I have spent her life educating myself about her conditions and now she is 19, I only know what she tells me. She is not assertive during doctor's visits. She has given them permission to speak to me but Heide will not unless Sara is present. Sara does not want to know andthing, I do. Will she die in 3 months? She has angina, pain in her arm plus fibromyalgia. No one will prescribe effective pain medication because of her age. She is sensitive to pain and needs a narcotic.

I have seen the ECG from her last holter monitor. This isn't the first ones I've seen. While the others were not normal the new ones are hardly recognizable as an ECG. There are 3 meandering waves, a huge spike and somemore little sand hills. I want and need a doctor to tell me what that indicates. I want to know if he thinks the inactivity is due to her hear, her pain or depression. I'll get the safe answer--oh, I'm sure they all play a rold. Yes, Mr. Obvious, but what can be done about it? She hates talk therapy--it is counterproductive with aspies. She has been to many and I can't think of a time it hasn't made her situation worse.

She doesn't want a heart transplant. How long can she live like this? Will it progress slowly or is she half way done a slope so steep she will never go higher only downhill. Will the slide down be fast or slow? Should I be looking into long term care (she has just been approved of SSI). She is an artist but feels too bad to work. That is pretty bad. Is anyone looking at the whole person? Yes! I am! But I'm all alone. Even with her permission, I cannot have my questions answered

I've held her 13 times, in my arms with no hearbeat and visions of a tiny casket with her in a pretty white dress. There has always been some chance Sara would live a normal life span with physical limititations but there is a change I migh win the lottery if I spend money on it. The most likely scenario is she will have a shorter life than normal, that she won't be able to have children, even travel will be too hard for her.

Sara presented with symptoms when she was 3 days old or around 5 months. Anyone in this community who suffered complete heart block, has concentric HCM (no abultions needed), who could barely finish high school and went on to have jobs or even like to be 40?

Since I can't know, I cannot geve her good advice. The whole thing sucks. Now my husband is beginning to save some symptoms.

So I'd like to hear from anyone who thinks they have symptoms lie her and what happened to them.

Too late.

FennieMac

[Laoshur]

FennieMac,

I wish I had answers for you, but I don't. But please know that I am praying for you and your family.

Rhoda