My Visit With Dr. Pravin Shah

[kathyn2]

I just LOVE him. I would give anything to have him down here in my area. I didn't find out alot yet because the echo tapes I took in were VERY bad. I have to go back there and he is going to give me a stress echo. I have quite an obstruction. Some things he did tell me are:

Do NOT see any EP doctor. Those studies are worthless for my condition. NO heart catherizations. Also worthless for my condition unless I was going to have the septal alcohol ablation, then they would do one to see your vessles while they were doing that procedure.

He is not too crazy about the alcohol ablations. There is not enough data on them. Myectomy still the gold standard and I could tell he much prefers that procedure.

He has not told me I need either procedure but he did say if you had the alcohol ablation not to do it in my town but to go to one of the major centers doing LOTS of them. Cleaveland Clinic, Mayo, Houston (or was it Texas?) were a couple he mentioned. He said the regular centers just do not have enough experience. You must go somewhere that has done at least a 100 or more. Preferably more.

I do not need an ICD. He also wrote on a prescription pad for me some guidelines for the doctors at the ER should I ever have to go again. Thank God! He also told me that the blood pressure med (atecand or candesartan) was what put me in the hospital the other day. This is what happens when you go to a doctor that is not an HCM specialist! My doctor down here, who is wonderful, had no clue about that. Dr. Shah gave me the reason it caused this problem. Basically it was making my obstruction worse and I could barely walk 20 feet! He mentioned the only type of drugs that should be taken for hcm.

I don't want to leave people the impression that EP doctors are bad for people with hcm. If you have a dangerous arrythmia or meet the guidelines that you may have sudden cardiac death, then an EP doctor is the type that would implant an ICD -- so they are useful. But an EP was not required for me because I do not meet the criteria of someone needing an ICD at this time.

Hope at least some of you found this interesting. I go back in a few weeks for the stress echo and then I will know more about my particular case. I am feeling much better tho after getting off those horrible BP meds!

[Linda]

Kathyn, that's a lot of info to soak up in one visit. You must have spent most of the day with him! I'm glad things went so well for you. He will work with you and your doctor to help you reach the best decisions and the best treatment. Thanks for taking the time to update us all when I know you must be exhausted tonite. We'll be waiting for more updates. Everyone is so different, there is just no "one way" to treat HCM, and I'm sure Dr. Shah impressed that upon you . Linda

[Sarah]

Great

Dear K,

Fabulous! I'm very glad you are getting the best care possible. Isn't it great to see someone who "gets" it?

Keep us posted on your progress. Good to know you don't need an ICD, too.

THanks for pointing out that everyone is different and what works for you is not always what works for someone else. However, everything you said is consistent with the current treatment plan for standard HCM (no complications or funny stuff).

Take care,

S[/b]

[Robert Hartwell]

Kathy,

I am so relieved by the tone of your post. After reading the last ones about the ER I was a bit depressed that you could not get the treatment or answers you deserve. I am very glad that Dr. Shah could give you answers. You sound very much upbeat and that is good.

I think Dr. Shah is right, before you rule out ablation, get an evaluation from a center that does a lot of them. Based on some of the experiences that I have read here on our board, if you are a candidate it is far less tramatic.

Keep pursuing solutions to make yourself feel better. Remember, were all here right behind you!

Bob

[kathyn2]

Thank you Robert and everyone. I cannot stress enough that if there is anyone on this board, who has not seen an hcm specialist recommended by the hcma that they are doing themselves a disservice. No matter how knowledgable you may think your regular cardiologists are. It is the difference between night and day. I was thinking I was crazy to have so many side effects from the blood pressure medicine. None of the doctors down here thought it should cause any such side effects. Dr. Shah knew right away why they had made me ill and believed me when I said how sick I was with them.

He also gave me guidelines of when I should go to the ER. He helped with so many things. An ablation or myectomy has not been ruled out in my case yet. He will know more after the stress echo. So I am waiting until he finds out more and what his recommendations will be. I do know that if he recommends a procedure to lessen my obstruction that I will somehow go to one of the major centers he recommends and nothing here in my state (there is no where here that he recommends!). I will have several more questions after he finishes with his examination!

A question I do have is: do any of these procedures, ie, ablation or myectomy, provide for a longer life or do they just help the symptoms so you can do more? Does anyone here know of people that were not happy with the procedures they had done?

[Cynaburst]

Hi Kathy,

I am not sure how to answer your question exactly about the life span thing, but I think that any septal reduction technique will improve the quality of your life, and since it relieves some symptoms, it could prevent you from having heart failure or something which might reduce your life span.

Anyway, I am so glad you saw Dr. Shah. I really liked him myself, and was really impressed with him. I knew he would help you and give you the direction you so badly needed. Please let me know what he says after the stress echo. I also had one there and the folks there really know what they are doing, plus he is present in the room with you telling them what to do.

[Pat]

That's GREAT news, Kathy! Your post sounds so similar to the one I made after I first met Dr. Shah: I also didn't believe the difference there would be between the generalist cardiologist and the specialist cardiologist until I had first-hand experience.

When have you scheduled your stress echo? Did he put you on any new meds? (Didn't you tell us that your blood pressure is high?) And isn't that note for you to take to ER if you have to go just a simple but elegant solution??? It should make you feel safer--and give the ER Dr. Shah's name and phone number to use as a consult.

Sometimes I feel jealous of all those folks back east--they have Cleveland Clinic, Mayos, NEMC, Toronto. But, we've got Dr. Shah!!!

Pat

PS A great BIG thank you to you, Lisa, and HCMA for connecting all of us to each other and to experts who really CAN help us!

[kathyn2]

Pat, I second and third that about the thanks to Lisa and the HCMA and all the other ladies like Sarah and Linda that help out so much. I wouldn't have known as much as I do at the ER and with my own doctor without them. But it is hard to tell the doctors that you know this or that because you read it on the net! LOL They look at you increduously. At least now I can say that Dr Shah told me so. And I have a prescription with his name and number on it outlining generic things for the ER folks should I have to go again. Pat, does the Mayo Clinic in AZ do any of this heart stuff?

[kathyn2]

Pat, I scheduled it in about 2 weeks but I am going to have to change the date because so far I don't have anyone to go with me. I don't like traveling far away like that alone, especially with my heart and the problems I have had with it lately. So I am working on finding someone to go with me and will probably have to reschedule for a different day. Sure wish you lived near by so you could come with me! Dr. Shah hasn't put me on any new meds yet. He knows that beta blockers and calcium channel blockers do not work for me (they make me sick...too many side effects for me). He said he may try norpace but he says if I couldn't take the beta blockers that I probably couldn't take norpace either. After the stress echo he will decide if he wants me to try it. He also wants my doctor to lower my thyroid meds to a lower dose. He wants to make me a little hypothyroid to slow down my heart rate. So I am trying to get my latest test results for that to fax him. There is so much going on!

[Pat]

Kathy,

No, Mayo in Scottsdale doesn't have an HCM program. But Rochester, MN, isn't TOO far away!!!

I'm coming over to San Diego (Green Hosp) for medical stuff on Mar 26. If you can set up something at Hoag on Mar 25 or Mar 27, I'd be willing to go with you. Check it out!

Pat

[kathyn2]

Pat

Pat, that would be great! He is there both of those days. I will call her and see if there is anything available. He wanted it in the morning because you can't eat beforehand. But I don't want to get there til 10:30 to avoid the morning rush hours. What area do you stay in when you come here? Also, how does he do this stress echo with the bicycle?

[Elsa]

Kathy,
I knew you would be pleased with Dr. Shah. It takes such a burden off our shoulders to have someone who is so knowledgeable and willing to listen.
I got his report to my PC doctor yesterday. It was very interesting and complete. Be sure you get a copy from your doctor to keep on file.
Even though he's a HCM specialist he also knew more about diabetics heart problems than the cardiologists I had been to. What a relief!
I hope to be in the San Diego area when Pat is there. Maybe all 3 of us can meet.
Take care, Elsa

[Linda]

Sounds like a local HCMA Chapter in the making! :P Kathy, I hope you've already made a copy or 2 of those notes from Dr. Shah. Always give a copy, not the original, to the ED or whoever, you may never see it again. Linda

[kathyn2]

Elsa

I hope we can all meet when you come down here Elsa. That would be fanstastic. Do you want to go with me and Pat when I go back to see doctor Shah? LOL You are welcome to come along. That should give him a thrill! LOL Now I am playing 'dueling doctors'. Dr. Shah wanted to know my tsh (for hypothyroid). He wants me to be on the hypo side. He thinks it will help to lower my heart rate. I called my internist and asked what my tsh is and it was a 3.4. Dr. Shah wants it to be a 5 or better yet a 6. So I told the primary care doctor that and he had a fit. He thinks my tsh is perfect where it is. He wants me to lose weight and says it will be near impossible by making my tsh so high. He won't lower the dose of the meds! He told me to call my regular cardiologist down here and see what he says. He has no idea who Dr. Shah is and doesn't agree with him or believe him. Now what? Anyone else have this problem?

[Sarah]

docs

Dear K

Have Dr. Shah call Dr. pissed-off and let them duke it out. Your regular card was the one who put you on the wrong meds in the first place and is not in charge of your HCM. Dr. Shah is, last I heard.

take care,

S