Going to See Dr. Pravin Shah

[kathyn2]

I have an appointment with him March 5 at Hoag Med Center. Has anyone here been to him (besides Pat....Pat I remember your wonderful recommendation and I now have an appt). If you have been to him I would love to know your experience. Also, what sort of questions should I ask of him when I go? Will he get into details as to the type of meds to avoid and which ones are good etc.? There is sooo much to discuss and so little time I am sure.

This week I have been trying to get used to a new blood pressure med which is the only thing I could half way tolerate of all the meds I have been tried on. But boy has my heart been doing flip flops. And it has felt like an elephant standing on it. It has improved somewhat but still lots of commotion going on in my chest. I sure wish I knew what it was!

[Cynaburst]

Hi Kathlyn,

I also wrote you before to tell you about my experience with Dr. Shah. I thought he was wonderful, and will really answer all of your questions. I saw 3 HCM experts recently, and I really thought he was the most thorough.

As I think I mentioned to you before, if you have an echo tape, he will want to see the tape itself, and not the report. He may also suggest a supine bicycle test which is also an echo. It was no big deal. It only lasted 6 minutes.

Please let me know if I can be of any additional help. I think he is a very conservative Dr. of the old school....he really takes the whole situation into consideration, and gives it alot of thought. You will be in good hands.

Best of luck,

Cynthia

[Elsa]

Dr. Pravin

Hi,
I saw Dr. Pravin last Tuesday. I was diagnosed with HCM and LVH last Nov. I sent a echo tape to him and it was so bad he wasn't even sure if I have HCM. However, my situation is complicated by long term diabetes (43 years) and there is something definitely wrong with my heart. Anyway he took the time to go over things with me. It turns out which ever problem or both, if that's the case, the treatment is the same. He's sending recommendations to my primary care physian and looking into finding someone for me who specializes in autonomic denervation of the heart. He was very kind and took his time with me answering questions.
You will like Dr. Pravin. Finding the Heart Institue and parking may take a little time. The hospital is doing construction work. We drove around it a couple of times before we figured out the map, so take extra time getting there.
Best of luck to you,
Elsa

[kathyn2]

Elsa and Cynthia

Elsa, I am wondering....if your echo was so bad Dr. Shah couldn't read it very well, why didn't he do another echo? Is it because insurance won't pay for another or what? Mine isn't very good either. I think the one before it was better and it is a year old. Do you think I should try and get that tape? Thanks for responding.

Hi Cynthia. Yes I do remember you telling me about Dr. Shah. I was so glad to get your info. Yours and Pats. You are all so helpful here. How are you doing? When do you get your icd?

[Pat]

Hi, all,

The echo thing is interesting. The short answer is probably that whether Dr. Shah wants a new one done or not is an individualized matter! Lori (his assistant) told me before my first appointment that he would want one which was within the past six months. (He did a new one on me though it had been only six months and he found something which had not previously been found on many, many echos. That speaks to how good his technicians are as well as how skilled he is.)

Kathy, do compile all your questions and have them in writing. With me Dr. Shah tells Lori to hold his calls and proceeds to talk at length with me. Each time it's been a half hour or more--and this is after all the talk which occurs during the testing, sometimes with only the techs and sometimes with him. I pull out my questions after listening carefully to him, taking notes, and asking for clarification. I've found that he has already answered almost all of the questions. He truly does understand what we need and want to know!

His office and Dr. Shah are so different from the general cardiologist's office!

Take care. I am certain you'll get the clarification and help you need. Keep us posted!

Pat

[Linda]

I had never met Dr. Shah until I attended the International Summit on HCM in Minneapolis this past Oct. I was truly impressed. It was quite obvious he is well respected in the medical community and in the world of HCM. It's great that these experts are located so far and wide instead of being clustered in one area. Linda

[Elsa]

Kathy,
Dr. Pravin wants my doctor to do a 24 hour halter moniter. Probably since he feels the symptoms are due to diabetes he didn't think it was worth doing another echo at this time. I've been to 3 cardiologist in 4 years and each has a differing opinion. The first one said nothing was wrong, but my symptoms have gradually gotten worse. It's all so confusing.
I will be interested in hearing how your appointment turns out. Heart problems are such an emotional issue. Isn't great that we have this forum to share information.
Elsa

[kathyn2]

Elsa, have you been diagnosed with HCM? In hcm the heart muscle, especially the septum, is enlarged. It shows up in an echo. If your echo wasn't readable, then there would be no way to know whether you have this illness or not. Thats why I am surprised that Dr. Shah did not want a new one. It must be that your symptoms or what he saw on your echo look like hcm. I feel for you. It is terrible to have heart symptoms and not know what is causing them. I went thru this since I was in my early 20s and no one diagnosed it until a couple of years ago. I was 50 years old! I hope you get to the bottom of your problems soon. Kathy

[Elsa]

Kathy,
I was diagnosed with HCM and LVH last Nov. I think the confusion is whether its genetic or the consequence of high blood pressure. My primary care physician seems to think high blood pressure is not the cause. My blood pressure has been mildly elevated at night (this is a diabetic complication) but not in the day time when it often goes to low early in the morning. Dr. Shah's words to me were "HCM is just a label." He said genetic testing would give us the answer but didn't think it was worth it. Whatever is wrong, he felt slowing the heart rate down would be helpful.
One thing I know for sure after having diabetes 43 years is that the medical profession doesn't have all the answers we would like them to have. Like Lisa says,"knowledge is power," so we just keep trying to get the best care possible and to stay up on new research.