Exercise stress test and exercising

[Wizedkyle]

Hi guys so I recently got diagnosed with HCM (the back story I put up in the Hi I'm new area) I had a bombardment of tests echos, MRI, coronary angio and a stress test.

On the day I did my stress test I was short of breath as per usual (with me having a day where I'm not would be like winning the lottery) and I did 16 minutes and the heart did everything it should except the fact my shortness of breath went through the roof.

So based on those results the docs said yeah your fine to do cardio (i was previously weight lifting and working as a removalist with my brother which I had to give up all since I was told I was at a high risk of SCD) now the problem is I have days where I can barely walk around the house or go out shopping and not be exhausted I have days where talking to people for too long makes the shortness of breath worse.

so my question is it possible for a cardiac stress test to show a good result and doctors say yes your heart pumps okay but have days where you can barely do anything?

[Jordan Z.]

Re: Exercise stress test and exercising

Hi Kyle and welcome....I am going to be very curious with regard to what other people have to say, however, given the combination of symptoms you have going on, I am going to offer that while there will be people here with significant degrees of understanding of HCM and other conditions, no one [save for a qualified MD it they exist among the member of this group] and even then not without test results and a physical exam should be offering you a diagnosis. The most important thing you can do for yourself is to locate a proper person at a facility that has deep experience with HCM so that they can evaluate the situation and figure out what is going on.

You have a number of different things going on at the same time, and making the effort to get properly evaluated now has the potential to spare yourself an extended period of suffering and wondering until someone "figures it out". i realize that may not be precisely the answer you are looking for and I certainly would bet I won't be the only person to make the suggestion. Best of luck in figuring this out sooner than later.

[Wizedkyle]

Re: Exercise stress test and exercising

Hi Jordan I am hoping to gain some more understanding about how people deal with the symptoms daily since my doctors keep saying just deal so a rather frustrating situation.

[JillC]

Re: Exercise stress test and exercising

I am going to venture to say with the severity of daily symptoms you have.....you are not at optimal medical management. This severe of symptoms is not "typical" of HCM. If it were me I'd be looking for a second opinion from an HCM expert. "Dealing with it" does not seem like a helpful medical suggestion. Also, if you have been determined to be " at high risk for SCD" , the next step would generally be an ICD placement.....is that part of the plan? There are very many mixed messages in what you are relating here....Please do try to find an HCM expert to manage your care.It sounds like you are suffering tremendously and in the correct medical hands HCM is a very manageable disease.

[Jordan Z.]

Re: Exercise stress test and exercising

Kyle....Once again, I can't possibly begin to tell you what to do about your symptoms, all I can do is relate to how I and my doctors have dealt with my symptoms. In my case, I had been diagnosed with HCM approximately two years ago and gone through the entire battery of tests. I had been put on Metoporal and the saw the cardiologist every four to six months, and was getting around just fine, exercising reasonably hard with light weights and cardio. In the beginning of August 2014, I started becoming short of breath and it got progressively worse over the course of a month. By approximately Sept. 1, I could barely walk 50 feet without having to stop and rest due to shortness of breath. When I went to see the cardiologist on Sept. 5, the trip on public transportation was a nightmare, the waiting room clerk took one look at me and brought me oxygen and took me to the emergency room [the cardiologist's office is in one of two twenty five story towers that are part of a six building, 6,000 doctor complex for Northwestern Memorial Hospital in Chicago]. They took me to the emergency room and ran a battery of tests, and concluded that I was experiencing congestive heart failure and had a fluid build up in my lungs. They admitted me to the hospital from the emergency room.

I remained in the emergency room where they put me on a IV diuretic to reduce the water in my lungs.....and thus began three days of diuretic and peeing to reduce the wate level. By the end of three days I had dropped 14 lbs most of it water and was able to get around quite a bit better. The following week, they did a new stress echo and my gradient was substantially worse than the prior echo, and the conclusion that was reached, was that my heart muscle may have actually become thicker over the past two years. Suffice it to say that in fairly short order after that, the recommended that some form of septal reduction be performed. Two weeks later, they scheduled me for an angiogram and possibly an alcohol septal ablation. The angiogram went fine [save for a whole separate discussion regarding issues with the radiocontrast dye and my kidneys] but, they were unable to find a suitable blood vessel to perform the ablation. Which has lead to the current situation where I am going to have a septal myectomy this coming Monday morning.

There you have the condensed version of my story. I should add that after being released from the hospital on Sept. 8, by monitoring my weight every morning with instructions to contact the cardiologist immediately if I noticed a day to day weight gain of > 1KG. I was able to remain essentially symptom free and function with a low dose of diuretic [20 mg furosamide a day]. There are other reasons that led to the decision to pursue the myectomy at this pint in time. However, the take away from this should be that I have a standing relationship with a cardiologist that spends almost full time seeing patients with HCM at a hospital that is a recognized HCM Center of Excellence. I was provided with very specific criteria to watch with regard to how I was doing, and who to contact if there were changes. I am sure that there are plenty of other people that will add their thoughts and comments to your question, and mine is just one example of how the doctors choose to monitor and treat my situation. As they say, each situation is unique and each may be treated differently. I hope that is helpful.

[mbcube]

Re: Exercise stress test and exercising

Kyle - The joy with HCM is that no two days are the same. There are good days and bad days. A lot factors in this - hydration, mineral levels, conditioning, meals/carbs, medication, etc. Its a personal issue that each of us struggle with. THIS IS NORMAL. How we deal with it? it varies. You'll soon be more in-tune with what works and what doesn't. For some, we learn the triggers, for others those triggers are vague and hard to tell but eventually you'll adapt.

[Hugh W]

Re: Exercise stress test and exercising

Kyle, to confirm what Marc has noted this disease comes with good days and bad days. While I have HOCM my condition is no where near as bad as the majority of people that post on this site.

In your initial post you did not mention if you were put on med's after your diagnosis. When I was diagnosed and put on med's my adjustment period to the medication was in the range of 6 to 8 months before my heart rate and body activity level was back to a point of being some what predictable. During this period I fainted in an airport, almost passed out while giving a lecture and scared the heck out of my wife and staff with my SOB.

I am now going into my third year of living with this affliction and I now know that my energy levels can vary by day or week. I work out every morning (cardio 30 minutes and 15 to 20 minutes of stretching / light weights). Two weeks ago I went hiking on a Saturday with my dogs - no problems with distance or keeping up a good pace. This past Saturday we went back to the same spot and I had no energy. I could not keep up a pace and had to cut the hike short about 1/2 way. I now know these types of days occur and the next day will be better so I do not let these periods get me down.

I do know that for me to be at my best I have to maintain fairly constant sleep patterns, limit alcohol, watch out for certain types of food (no msg, limited pizza) and that if I have had a heavy exercise day most likely I will be very tired the next day. I just do not let this pattern get me down mentally as I know there are many people out there much worse off than I am and there are good days ahead.

I wish you all the best on your journey and I would encourage you to find a cardiologist that is an HCM specialist.

[Wizedkyle]

Re: Exercise stress test and exercising

Thank you for your reply Hugh I forgot to mention I was put on verapamil 360mg slow release been on that for coming on 2 months and I believe it has contributed to my increased fatigue and light headed feeling.
I managed to get into contact with a hcm specialist and have a consult in a week and a half hoping some light can be shed and hopefully manage this a lot better symptom wise.

[JillC]

Re: Exercise stress test and exercising

Kyle....I am so glad you found an HCM expert to review your case. Will he have all your recent test results so you won't have to redo everything? Of course...if it's been a while you would be better off getting new ones. Be sure to make a list of all your symptoms and all your questions and don't leave until they get answered....We tend to forget a lot of stuff once we are in the doctors office.....so I encourage written lists.
Keep us posted.

[Hugh W]

Re: Exercise stress test and exercising

Thank you for your reply Hugh I forgot to mention I was put on verapamil 360mg slow release been on that for coming on 2 months and I believe it has contributed to my increased fatigue and light headed feeling.
I managed to get into contact with a hcm specialist and have a consult in a week and a half hoping some light can be shed and hopefully manage this a lot better symptom wise.

Kyle when I was first diagnosed I was put on 240 mg of verapamil SR, another BP control drug (Norvasc) and a diuretic. The 240mg was the prescription dosage for a man of my size. My body had trouble adjusting to this cocktail and my HR went very low, I was quite tired and did not have any energy levels. After being put in the emergency cardiac ward due to having the pulse of a dormant carrot, the verapamil dosage was decreased to 120 and I found this site and an HCM specialist. The specialist took me off the cocktail slowly and increased the verapamil back up to 240 mg. I am no longer on Norvasc or the diuretic. I take my verapimil on a split time 120 mg at 5 am and the second dosage at noon. I have found splitting the dosage reduces the fatigue factor and keeps me sharp.

Finding a specialist to talk to is key. When I go into see mine I always have a written list of questions, full tracking of my BP and HR with notes on the days that I feel poorly or if something has happened (hard work out the day before or an injury). Something as simple as a nasal cold or allergies can impact you on how you feel more than what you were used to. It does take a while to realize and work within the limits of the new you.

Ask the specialist what over the counter drugs you can or cannot take for headaches, allergies etc.

[mbcube]

Re: Exercise stress test and exercising

Hugh - your last sentence was excellent. We do tend to forget these things.

[Hugh W]

Re: Exercise stress test and exercising

Marc I am fortunate in that my cardiologist works with me on my questions in the "new age" of e-mail. I can send in a question and have a response back within a day or two. When I tore my bicep and had conflicting directions from physicians on medications to take for reducing swelling and pain management I sent a message to my cardiologist. She advised which prescribed medicines I could not use, which over the counter products I was to stop and which ones I could use. This brought my BP back in-line. End result I was not able to use any anti-inflammatory meds and only one product for pain. There is no way I would have know this on my own.

Our bodies are now different. The specialists are the one's to ask even the most minor questions.

[Wizedkyle]

Re: Exercise stress test and exercising

Thank you all for the advice I've created a fairly long list of things to ask her. I will keep you informed on the outcome

[luugar]

Re: Exercise stress test and exercising

Wizedkyle, HCM seems to vary so much with different people and severity of symptoms. I dealt with my symptoms for years on medications verapamil and toperal, probably misspelled that one. Some days were really good and others I would struggle to do the same things I had done the day before. I recently got to a point where meds weren't cutting it and I had to think about surgery. Because of a bundle branch block I wasn't a candidate for the less invasive septal ablation. I had surgery on January 6, 2015 and recovering. I felt a difference almost immediately with my breathing. The good thing is there are lots of doctors to choose from to get a second opinion if you feel you need more answers , good luck!


Sent from my iPhone using Tapatalk

[BarbaraRose]

Re: Exercise stress test and exercising

Marc,

i am writing to you because I can relate to your sign off "Quietly going insane."... My husband 57 dx'd w/hocm in 2007 and I just discovered that my 8 year old daughter
has a few cardiac structural abnormalities and that it is possible she has inherited hcm. I am an extremely faithful woman - believe that God has made me aware of their conditions so that we can mitigate any complications or sd. But on the other hand I am "quietly going insane".... not sure if I experience literally what you are experiencing... I want to do the right thing for both my husband and my daughter. I plan to seek knowledge and learn what works for some....and what doesn't work. My husband sees Dr. Lever in Cleveland Clinic and my daughter just saw Dr. Tozzi in Hackensack.


I pray for not only my family but for all those who have HCM and for the hcm healthcare providers....and of course for Lisa Salberg for all that she has done to increase the awareness of hcm, and of course for her health.

Peace & health always to you & your family & to all those who are able to read this post.
Barbara
husband hocm 2007
daughter 8yr old possible hcm