specialist... does quality of live improve?

[Lisa Salberg]

Have you been seen by an HCM specialist and if so do you feel that the care you received has improved the quality of your life as well as your understanding of HCM?

[sueb]

I think the specialist may have saved my life by suggesting an AICD. However, the medications I am on, supposedly to save my heart, haven't improved the quality of my life. Before, I was fainty. Now I am breathless. Guess that's just HOCM but neither is great quality of life. I'm sure there is a next step but I'm not ready to take it yet.

Sue

[vickie]

I put off seeing a specialist for a couple of years. Finally went to a specialist in December at a loss for what to do next. I was on max of 3 different drugs, already had a pacer/defib. Still very symptomatic-mainly SOB and dizzy. The specialist .could not find the obstruction which blatantly showed up here- both before and after my visit to Cleveland. He disagreed with the treatment I had had so far but offered no recommendations for iimproving my quality of life. He did make an adjustment to the PR interval on the pacemaker which immediately made me less SOB but also made my chest pain come back.My cardiologist here had tried the same thing with the very same results. So ....... I was very hopeful going in to the specialist, but left there feeling hopeless and certainly my quality of life has not improved. The way I look at it is this- my symptoms are just as bad but my options are less. :(

[Lisa Salberg]

Vickie...dont give up, please talk to your doctors and see what other alterations can be made to your meds.
Are you Obstructed?
Lisa

[vickie]

My resting gradient is in the 20's (down from the 60's pre-meds), but my provocable gradient with Dobutamine is in the 150 range (with very minimal Dobutamine).When I was at the specialist's, they used amyl nitrate without a significant rise in gradient. I understand that it is doctors preference as to which agent they use to provoke and I don't know why I have such a huge difference between the two but all I know is the Dobutamine makes me feel like I do when I have the chest pain. Very little exerting will trigger my pain. My septum is only 1.6- 1.8. I am on Norpace, Atenolol, and Cardizem. At the specialist, he said "I don't have all the answers". I had put alot of hope into that visit and now feel that this is as good as its gonna get and believe me, I am not a whimp and I am very restricted in what I can do.

[Pat]

Vickie,

My resting gradient is 15 to 16 and my gradient with exertion is 70 to 80. My septal measurement is 1.6. Dr. Shah told me that if medications are not effective in relieving my symptoms I am a candidate for alcohol septal ablation or myectomy. He told me that either can be done with a septal measurement as low as 1.8.

As I understand the physiology, obstruction & gradient are directly related. So if you have a provocable gradient of 150, then you must have an obstruction. It seems to me you should contact the specialists again and talk about what's happening in your heart, your symptoms, and your options. It seems likely to me that you'd feel a whole lot better if that gradient were reduced through ablation or myectomy.

And I'm well aware I don't know your whole story, so do call the doctors and talk with them!!!

As for me, seeing the specialist helped me a whole lot! I'm on a lower dose of beta-blocker so I have less dizziness and it's a different drug which also has stopped most of my chest pain. Yep, I'm still short-of-breath--that's the obstruction, I'm sure. And I have a much better understanding of what's happening in my heart and my current and future options.

Pat

[Robert Hartwell]

Seeing a specialist make a HUGE difference in my life and it took a little over 2 months from first visit to a new me! I had previously been seeing my local cardio who was being very cautious and looking to me to make decisions. The one that took the longest time was to see a specialist. My only regret was that I did not know about HCMA earlier.

Bob

[SummerbutterflyS]

I put off seeing a specialist for a couple of years. Finally went to a specialist in December at a loss for what to do next. I was on max of 3 different drugs, already had a pacer/defib. Still very symptomatic-mainly SOB and dizzy. The specialist .could not find the obstruction which blatantly showed up here- both before and after my visit to Cleveland. He disagreed with the treatment I had had so far but offered no recommendations for iimproving my quality of life. He did make an adjustment to the PR interval on the pacemaker which immediately made me less SOB but also made my chest pain come back.My cardiologist here had tried the same thing with the very same results. So ....... I was very hopeful going in to the specialist, but left there feeling hopeless and certainly my quality of life has not improved. The way I look at it is this- my symptoms are just as bad but my options are less. :(

I would like to give you my experience on this subject. I went to see Dr. Lever in March. I have a lot of the same feelings that you do. I am not obstuctive, but very symptomatic. Dr. Lever did change my medication from Cardizem to Norpace. He also had me wear a monitor for 48 hrs. and found some very fast heart beats (don't remember what he called them) so he had me get a difibulator/pacer which I had put in 3 weeks ago.
My feelings on Dr. Lever is that he specilizes in HOCM and is not the greatest in dealing with people with symptomatic HCM. I was really disappointed after I seen him. It cost so much to go to Ohio, plus the cost of everything. I spend money I don't have, and like you stated "my symptoms are just as bad, but my options are less". Lisa and Sarah correct me if I am wrong, but I feel like I went to the wrong doctor, that I probably should of gone to Dr. Maron in Boston or a doctor that does more of his work for no-obstructive HCM. The problem is does the doctor takes your insurance and the reason I went all the way to Cleveland is they are the only ones that took my insurance. :cry:
After I got home from Cleveland I made an appointment to see a doctor about getting the Gastric Bypass surgery, as every time I gain 5 lbs. I have worse symptoms and I have been steadly gaining weigh, I am up to 279 lbs. I can hardly do anything anymore and have to do something to get this weight off. The doctor said he couldn't do the Gastric Bypass but they are now doing a different procedure called a Lap Band which they don't have to cut your stomach or bowels, instead they put a plastic donut with a balloon in it around your stomach and close your upper stomach off some so you don't get so hungary,he said he could do that. I have to go to a lot of different doctors and get the ok to have this done. My cardioligist was the main one and she told me as soon as I am healed from the difibulator/pacer she would give me the ok.
We are expecting our first grandchild (boy) in September and I want to be able to help take care of him. Somehow life has to get better. I feel like I am batting emptys so much lately I sure hope this helps.

[Lisa Salberg]

Hello from Washigton DC. Just a quick response since I am doing this from a cell phone. Regarding your comments on Dr. Lever....
I would have to disagree that Dr. Lever only specializes in "HOCM".
It is true that those without obstruction have fewer treatment options and there by our treatment options are limited. I strongly recommend a phone call to Dr. Lever's office to discuss a possible adjustment in your meds that may improve your symptoms. I will write more later totally lost in DC looking for my hotel.

Be Well, Lisa

[Sarah]

Dear Vickie,

I was on Norpace, a beta-blocker and a calcium-channel blocker all at the same time once and I felt terrible. Unless there is some special reason why you are on a calcium-channel blocker AND a beta-blocker, I would seriously consider (with doctor's approval) dropping one of them. For me, it was the CCB that was so horrible, but everyone is different. Whatever you do, don't go cold turkey on your BB as it can make you feel worse by stopping suddenly.

While it is very important to see a specialist when you have HCM, there are often no easy answers. We don't even know why certain meds work on certain people and not others. Finding the right medication combo can take years.

For us non-obstructed people, there is only medication and nothing is every really going to make every symptom go away. And sometimes the side effects are just as bad as the meds and you start all over again with something else.

When my last medication stopped working, I went to my local cardiologist and said, "So my options are X, Y, and Z." He said yes. We discussed my options, with both of us agreeing at every point. We decided on X, which was to do NOTHING. He said, "So when am I going to see you again?" I said "three months?" He said, "Ok." I said, "I'm taking this much coumadin." He said, "You know it better than I do." I then had the same conversation with my uber specialist at the uber heart center over the phone. Ditto.

That being said, the next time I need ANY medical procedure whatsoever, I'm going to my heart clinic and avoid my local hospital like the plague. They've almost killed me and my mom several times a piece.

I'm sorry you didn't find a magic bullet in Cleveland, but there may not be one anywhere.

Take care,

Sarah

[Dave Johnson]

Do it do it do it. Even if you don't feel better physically, there is an incredible emotional and mental relief to know that you've talked to the people who have the right information. Information is power!

[Cappy]

I recently made the trip out to Minneapolis, to see Dr. Maron. I thought the trip was very worthwhile. I had seen 12 other cardiologists locally.

[swub]

HCM was diagnosed at my first visit, in March of 1996, to the cardiologist that I was referred to by my primary care doctors after an echocardiogram. After it was determined that the surgery could not be done in Philadelphia, I was scheduled to be seen at NIH in late July. There was a backup in scheduling because of all the ice during the winter of 1996. My specialist thought the waiting time was unacceptible. He searched on line and found Drs. Nishimura and Danielson at Mayo. I met them on a Monday and had the surgery on Tuesday. Since then, I've been fine. I never realized the problems that are associated with HCM and how fortunate I am, until I read the postings from the different contributers.
Elizabeth Ann

[Bert]

From our experience, the specialists we dealt with at a university center in Boston were no better than our local cardiologist. Due to the fact that they supposedly only see their HCM cases on Tuesdays, our last visit was long, hectic, and worst of all it was obvious that the "experts" had had enough by 4:30 that afternoon. We were rudely dismissed by one of them who told my son after his fourth echo, 3rd stress test and a cardiac MRI not all in the same day obviously) that he didn't have HCM but that they would call us.

We have since dealt with our local cardiologist who has shown a lot more compassion and has explained in detail my son's condition to him. We were amazed and delighted to find out that knowledge and expertise with regards to HCM is not privied to referral centers only. He's aware of the threesome in Boston, and did say that they're very good at dealing with patients who have symptoms and conditions that have already been identified and therefore can be dealt with. In terms of diagnosing and following up with an asymptomatic 15 year old athlete, they showed no interest, especially with his emotional well being.

Again this is only our personal experience and feelings. By no means should anyone question your specialist if they improve your condition. We felt that our son became just another statistic in their database that can be later used for publishing purposes, which I feel is how a lot of them like to build up their large following.

Our son's quality of life has not changed physically because he hasn't experienced any symptoms yet. Nevertheless, his emotional status has improved greatly because we think we have found someone who understands how important it is for him to remain active and is monitoring his activities very closely, the other part of the quality of life that deals with the head more than anything else.

"Risk is something we live with, fear is something we overcome".

Be well,

Bert

[Lisa Salberg]

Bert,
I think your points are excellent!

Sometimes you can go to the "best" centers with the "most" expereince...however sometimes it is just not a good match for one of 1000 reasons.

The important thing is for anyone...to find a doctor who will listen, work with you and do his/her best in giving you the care you need.

Be well,
Lisa

[Laura]

We went to the boston clinic, were treated very nicely there, partly i think because they knew there was not much hope as i had progressed so far and since i am HCM only. But they were willing to work with my PC and try some different meds, none have helped really
We did learn a few things we didn't know, they were able to help my husband understand it more. And we do feel more confident with what is in store for us.

[Richard Nelsen]

Great topic, althou it does leave me alittle unsettled about my upcoming event (I hope ) in northern California. Rick

[DLCC2]

Well after almost a year since my expensive trip from Oregon to Cleveland, I finally am going to respond to this message.

It's really hard for me after all I've been thru in my life with rape and sexual molestation, long years of self abuse, nicotine addiction, cocaine addiction, self loathing, stomach stapling 20 yrs ago that and regaining the 100lbs & more to find out that I have HOCM and then to go to see Dr. Lever and be treated like a waste of his time and the lowest thing to crawl in his office. Even my husband was astounded by the disdain and out right disgust with me. Mind you I have recovered from and have been drug and nicotine free for over 15 yrs. And I've never had an alcohol problem. I have fought the hard fight!

I am still fighting the hard fight. I am terrified to be thin and terrified of dying of this disesase let alone the Hep C and life threatening asthma & allergies.

I have stuffed the anger of this trip long enough and I know in my heart that it must be extremely difficult for someone like this doctor who saves lives everyday to deal with obese patients but it is still no excuse. Part of my over eating is due to my inability to deal with my anger appropriately. That day with this doctor all I could do was cry because I could not believe after the long hard journey in a plane, the expense, the lack of sleep that I should be treated with this attitude.

Before I even met him as the nurse brought me from the outer waiting room thru the door I saw this man who looked at me and said to the nurse "Oh my God, who's patient is that" for which the person standing next to him replied "your next patient" I prayed this guy wouldn't be my Dr.

Please forgive me if I'm babbling and my train of thought jumps I'm very sick today and when I returned to the board and saw the question regarding specialists I knew it was time to respond.

Thanks Lisa and the rest of the staff who have poured their hearts and souls into this site. I appreciate it and have decided not to let my trip from HE double tooth picks keep me away.

Oh and the bottom line on did my trip help. NO! He said that my care by my local cardiologist was right on target and that I needed to loose the weight because if I need surgery my likelihood of surviving with my current weight, I would not make it.

Sincerely


Diana

[Burton Borrok]

Dear Diana,
I am absolutely shocked, and very disturbed by your posting. I guess we all have been abused by one doctor or another during our lives, but what you describe is absolutely uncalled for and totally inexcusable. We are all human beings, and are entitled to being treated with dignity and care – especially by an educated person such as a doctor.

If you’ll pardon my observation – You’ve Come a Long Way Baby! You haven’t yet conquered every mountain, as evidenced by your persistent weight problem, but you have successfully conquered many a high mountain peak. You have reason to be very proud of yourself.

Regarding HCM, the vast majority of people with the disease live a full lifespan. Unless there are many in your family background that died of sudden cardiac death, and you don’t take care of yourself properly, you will in all probability live out all the days of your life.

I suppose your biggest hurdle now is your weight, which is a threat to your wellbeing, but after the mountains you’ve already conquered – what’s one more? Please keep in touch and let us know how you are fairing.
Burt

[DLCC2]

Thanks Burt. your validation and empathy for my journey is received with great warmth and balm for my heart. One of the many great things that keep me going are the people who love me for who I am off the scale. Who call me and who often ask for my help or wisdom scary sense of humor. I am more that a physical body and my conditions and I will be known for so much more when I'm gone. I finally draw strength from these blessings in my life to carry on. Thank you again for your kindness and blowing a warm comforting hug.


May you blessed and have superior life ahead of you. :lol:


Sincerely,


Diana, Queen of a lotta love, & married to the King" 8-) :lol:

[Lisa Salberg]

While we each have a different experience with different doctors I have to say your posting is the complete opposite as to what I hear from nearly everyone else we have known who has gone to Cleveland.

I was interested to see in your posting that you have been through a great deal in your life and that you have had a difficult time dealing with anger. I will suggest that sometimes we expect a trip to a specialist to solve all of our problems; I do not think this is a realistic expectation.

I appreciate your opinion and experience however I have to say in all honesty that Dr. Lever is one of the most caring doctors I have had the pleasure of knowing. Dr. Lever has gone above and beyond for many patients and in fact has called me on nights and weekends to help make connections between patients and the HCMA (with all appropriate consents).

We all have good days and bad. I have often seen confusion in people between "intent" and "perception" - A statement make by one person may be "intended" in a good spirit - however the person receiving the information may "perceive" it as something different. I would suggest there may have been a similar situation in this case. I would hope that you could re-connect with Dr. Lever and discuss this matter.

I hope you are feeling well.

Sincerely,
Lisa

[mimoo55]

I would have to say 'Yes' seeing a specialist did help my husband. He had been seen by a local cardiologist and was told there was nothing wrong with his heart, that he was out of shape and needed to be walking 4 miles a day. He could barely walk from the car to the front door because he was so short of breath. We went to St. Louis to see a specialist and was referred to another dr. that performed septal alcohol ablation last November. My husband felt 'different' on the table after the procedure and has done well since. He has had some fatigue recently with such hot temperatures and high humidity where we live.

Paula

[mimoo55]

P. S.

I forgot to say he was obstructed, but I guess that is obvious since he had the ablation.

Paula

[isabellakp]

I can safe that the specialists i saw absolutely saved my life. The local cardiologists that i was seeing were trying meds on me, and due to other complicated health issues, i was literally dying every day. I didn't have the time or the options of waiting until meds worked. The specialists that i was blessed with meeting were not only excellent in their professional assesment, they truly cared for me as a person. The surgical procedure that was done gave me the ability to get up and walk then next day! I hadn't been able to move more than a few steps for so long. Though i am still undergoing challenges with pre-existing conditions, I could not say enough about the specialists who saved me. I even consider moving to the east coast so that i can be followed there regularly. My cardiologists here while very kind, are not nearly as informed or as thorough in their follow up.. I had an alcohol ablation and they keep having to look it up and find out what it is ....Ha! Meanwhile the HCM specialists have really got it all together, and i trust them with my life!!! I shall be ever indebted to them and to the people of this website for being alive to say MERRY CHRISTMAS!!!! Believe in Miracles!!!!!

[THG]

This is THG I haven't posted for a while. Last March after gathering as much information as I could about my disease, I saw Dr. Lever at CCF. He put me thru a battery of tests and then sat me down and explained all the results and answered my questions.
I have known about having IHSS or HCM which is what Dr. Lever called it since 1999. But my previous Cardiologist said that the medication wasn't working(slowing heartbeat) I was on 240 mg verapamil after going up from 120 mg. the year before.
So saw Dr. Lever and he told me that my septum was thick at 3.9 but my at rest gradient was 11 mm Hg and post treadmill was 81. But I did a full 10 minutes on the treadmill. He put some physical limitations on me, double my verapamil to 480 mg. and I actually feel pretty good. This year's check-up showed about the same.
So my experience has been good and the visits to CCF better than I could have hoped. Merry Christmas

[THG]

Oh, yes I am obstructed and I also have Hep C .

[Reenie]

I'm glad to hear that you are feeling pretty good now. Stop by when you can. We enjoy hearing from you.

Reenie

[Beverly]

Lisa,

I would say I'm thankful for seeing a hcm specialist but not the news I recieved. So my quality of life is not improved but if I hadn't seen Dr. Maron I would probably be dead now. Seeing specialists in HCM is a necessity and I can't say that enough. And being the driver in the driver seat of your medical care is of upmost importance. That's my take.

Beverly

[Lisa Salberg]

Beverly,

I hope you had a nice Christmas. You are a very special person and one that I admire on so many levels.

Stay strong and keep your amazing faith. You are in my thoughts and prayers - everyday.

Big hugs!
Lisa

[shirleymahoney]

Iam very thankful for Dr. Barry Maron and his staff for all they did for me, they gave me a the confidence to come back to Virginia and talk to our local transplant team, as one of the best centers in Minn, Dr. Maron said we have one of the best transplant centers in the country, Thank You Lisa for all the work you do on a daily bases to help people stricken with this disease and for starting this sight to help sooo many people

Shirley

[mtlieb]

Shirley,

I can't tell you how happy i am that you had such a great visit with 'Big Daddy' in Minnesota, and that you are more comfortable with the idea of having the transplant done. I hope that you and your family are enjoying the holiday season, and i pray that the New Year brings all kinds of wonderful things for you!

P.S. I'm still expecting a dance with you at the HCMA conference! I sure hope Ken isn't the jealous type. ;)

Jim

[shirleymahoney]

Jim

You got it, i would love to have a dance with you and ken doesn't have a jealous bone in his body

Shirley

[ihss1898]

I wish I could see a specialist but with out health insurance no one will see me. Im forced to either do nothing or go to a county hospital and they dont even know anything about this disease really. I do go to Loyola and see the cardiologists there which I have done for 10 years (I used to have insurance until this past year) and I see as little as I can bc of money but i would love to see a specialist for this. I did see Dr. (XXXX) about 6 years a go and he was no help!

[Pam Alexson]

Hi IHSS,

I edited your post regarding the docs name. We do not mention names here of docs or institutions when we are unhappy about something they did or did not do. They are not able to defend themselves here in this forum.

There are many times in which our conditions and circumstances change and we need to be re-evaluated by another person.

Regarding your condition it really would be a good idea to talk with Lisa , sounds like you have a lot going on and need a help turning in the right direction.

Have you tried applying for medicare( disability). Forgive me if I have the facts wrong , but are you presently unable to work do to the disabling effect of your HCM? Are you able to purchase insurance in the meantime while you consider your options. Again I think a phone call should help here.

Best to you and let us try to help.

Pam