Feeling a little overwhelmed

[samissionary]

I am a 56 year-old male. I had bariatric surgery 2 years ago and have lost over 140 lbs. I was dx'd with HCM about 2 months ago. I had been feeling very fatigued for quite some time, but just put it down to stress, overwork and the tremendous change in my diet.

Since being diagnosed, I have been so shocked at how tired I feel at times. It seems at times like it's a chore just to walk, especially if it's uphill. On other days I feel pretty much OK. I've also been surprised that it seems to have come on pretty suddenly.

I have an appointment with the cardiologist in Indianapolis on April 12. I've had the Holter Monitor, so I don't know what to expect. What questions should I ask him? Can this be fixed or can I expect to feel like this the rest of my life? I've always been very active and as a missionary, I travel a lot, but this thing has really slowed me down. I'm confused and a little worried about being able to keep up my schedule. The thought of having to slow down isn't really attractive to me.

Is it normal to feel this tired or is it "in my head?" I've never really felt like this before and it is very confusing and a little disconcerting.

I guess this is a whole lot more I would like to say and things I would like to ask, but I'll stop here for now.

[mbcube]

Re: Feeling a little overwhelmed

I'm a bit confused - You were DX 2 months ago, yet your going to a cardiologist? Are you on any medications now?
If in fact you do have HCM, its important to see an expert in it. VERY few doctors see HCM patients, most really don't know much about it. We call the COE's here "Centers of Excellence". These are centers that usually have a dedicated clinic for HCM patients. They see and treat a high volume of HCM'rs. They also do research, and have experienced surgeons (if thats an option).

Its easy to be overwhelmed. Try ordering the book by Maron/Salberg on HCM. Two of the most knowledgeable people who have dedicated their lives to HCM. Until then, stay hydrated, read & learn as much as you can. A call to the Office 973-983-7429 can help reassure you and give to an idea of what to expect and what to ask.
Good Luck & keep us posted on how things progress.

[kirbyj]

Re: Feeling a little overwhelmed

I wasn't diagnosed with HCM until I was in my fifties as well. Being tired is a typical symptom of HCM, just as shortness of breath and angina are. Looking back I can see I was having occasional symptoms of HCM in my thirties and forties. Being tired can also be a side effect of medications taken for HCM. Walking uphill was a really tough thing for me to do also, especially after eating a full meal. I remember telling my internist as well as the cardiologist doing my stress test that I got pressure and angina walking up steep hills in San Francisco after eating a big meal during our frequent sales meetings, and they laughed saying I shouldn't walk up steep hills after eating in San Fransisco, then the cardiologist saw my thickened septum on the echocardiogram!

Your cardiologist will be able to help you greatly. Everyone has a different path to follow. Your cardiologist will develop a treatment plan with you. My path was to have medications for 12 years and then a myectomy two years ago and I have lived a very
full life. Dan, welcome to HCMA!

[Moosedreams]

Re: Feeling a little overwhelmed

Dan:

I am in Louisville just down the road from you. I too was diagnosed in my 50's (52) 2 years ago. I went to a COE (cleveland Clinic) as my local cardiologist just was not familiar with HCM (he sent me to CCF). Since then I have changed local cardiologists and boy does she know her HCM (I did a lot of Googling to find her). While she is not listed as an HCM specialist I selected her because I found she interned, did her residency, and fellowed at Mayo which is another COE for HCM. In fact she was involved in clinical trials and research for HCM while she was at Mayo.

Send me a private message if you are interested in getting in touch with her.


Toodle pip... Moosedreams

[gfox42]

Re: Feeling a little overwhelmed

Hi Dan,
I was diagnosed in my late 40s, and at first I really doubted it because it seemed to me that I had few or no symptoms and no real indication of a heart problem. I came to realize that, in fact, most HCM-related changes are slow, and I'd simply become accustomed to my symptoms. Fatigue is one of them -- yes, it's pretty common!

I think Marc's suggestions are solid: read more, call the HCMA office and talk with them about what you need to know, and make an appointment at one of the COEs to be evaluated. You'll be glad you did.

Gordon

[Linda]

Re: Feeling a little overwhelmed

Dan - it's a lot to get used to and learn about in 2 months time. You may feel like the symptoms are much more noticable since diagnosis, but think about this,- you had something going on that led you the the doc in the first place. So, the symptoms were indeed there and affecting you, now you know it's real.

Do think about calling the HCMA office, learn all you can, have your list of questions ready for your next appt with the doc. I read your other post about your Holter report - when you see your doc, have him show you those slow rates and explain exactly what they are for you and what they mean. Let him know any symptoms you feel when having them. He/she should certainly be able to reassure you.

Welcoming you and Wishing you the best - Linda

[Susank]

Re: Feeling a little overwhelmed

Hi Dan,
You have certainly come to the right place. Folks who don't have HCM - even your friends and family - might not understand what you are talking about. We all experience HCM differently, but lots of us will relate to what you describe. This includes the emotional side of it as well as the physical symptoms. For me, it is being diagnosed in my 50's, shortness of breath going up hills, and wondering if it is "in my head" on the days when I feel more symptoms.

Please do make an appointment to speak with Lisa Salberg. She will help you understand what you are feeling and will point you to an HCM specialist - I suggest you take her advice even if the doctor is not conveniently located. Take notes on what Lisa says. Looking back, I see that she was very accurate in what she predicted for me, and I must admit, I didn't believe her at the time (because I didn't want to hear it). It is a scary journey we are on, so it is a relief to have the support and understanding that can be found in this forum.

Good luck and please keep us posted.

[DianeE]

Re: Feeling a little overwhelmed

Dan
I was dx'd at 40 and for 9 years I was doing great under management of my local cardiologist and a combination of medications. However 3 years ago I started to feel worse and I was fortunate enough for my local cardiologist to admit he had very few HCM patients and now that I was getting more symptomatic he thought it best to refer me to someone who understood the disease a little better. Only after the new cardiologist recommended surgery a few months ago, did I get serious about looking into who and where my care was being managed. I am now being taken care by one COE and having surgery in May at another COE (they are working together to get me well).

My point is to ditto all you have heard in this message board. If at all possible try to see a doctor at a Center of Excellence. You will probably have to drive a ways, but it well worth the trip. You will get answers to all your questions. I am learning very quickly that many,many local cardiologists simply don't understand HCM and therefore may not understand or appreciate what you are going through. For example, the overwhelming fatigue you talk about. It is very real and very frustrating. I have lived with it for years and even knowing I had HCM still feeling like it must be all in my head. Only after I had seen my doctor at my COE did he explain to me and my husband why I really was exhausted all the time. He put it in laymen's terms that made me see that I wasn't just getting old and lazy but I truly was dealing with a very real medical issue.

You mentioned that you were worried about keeping up with your schedule. I understand that one too. I was finding I was less and less effective at work and had a hard time thinking clearly after about 3:00 in the afternoon because I was just so darn tired. Hopefully medication will help you with that. It did for me for about 9 years. However, be prepared that some of the meds they will start you out on will take your body a while to adjust to. In fact, they may make you even more tired---at least in the short term. But as long as you are seeing a doctor who understands HCM he/she will be expect that and will help you make the necessary adjustments. One you get the right combination for your body you will be surprised how much better you feel. Good luck to you and keep checking this board. You will be amazed at what you will learn from others.