Ups and Downs

[Nigel]

I was wondering if anyone else has some weeks that are good (symptom free) and others that are awful. I’ve noticed that some weeks my heart feels great and my pulse is in the 70’s to 80’s range. I’m able to go walking, shopping, and even do some hopping! During my up times, my chest pain is so minimal I find myself enjoying life (I’ll even forget I have this).

Other weeks, like this one, I can’t even stand up without my pulse going over 160 and feeling like my heart is about to jump out of my chest. My neck feels very tight and my pulse is so hard it can be seen! Today while at the store I thought I was going to hit the deck because everything started to spin.

Wish you all the very best,

Nigel

[cheerchicken05]

Re: Ups and Downs

heya--
yeah my symptoms definatly change daily. some days i'll have trouble changing classes, other days i can run around and be fine. As for traveling, this summer i traveled a lot and didnt have any trouble. just make sure you get there early enough as not to be rushed...

[Laoshur]

Re: Ups and Downs

Nigel,

Yes, I think the ups and downs of HCM are typical. A year and a half before I was diagnosed I had a month or six weeks of constant arrhythmia which began by fainting while exercising. I started taking a Ca-Mg supplement and lo and behold it went away! I thought I had solved the problem. My GP tried to tell me I had not, but I was completely convinced. I came to China to live, convinced that if there was anything wrong with my heart, it was minor. (I knew the doctors thought there was something wrong because I had a very loud murmur that could be heard without a stethescope and a bad EKG, but they had said that it was BP related and I kept my BP under control most of the time, so did not figure this was a big problem.) This was in spite of the fact that I had had chest pain for years and that my mother and all her family had died of heart failure, three out of five of them without any prior warning. Denial is a great thing sometimes!

Imagine my disappointment and frustration when about 2 months after getting here I fainted again and began to have arrhythmias frequently. But a month or so later, they alleviated, and I "forgot" to mention them to the doctor when I went home. I had had a bad case of pneumonia and was much more concerned about that. So, a month or so after we came back to China I was nearly fainting several times a day, had the pounding heart (had been there off and on my whole life), terrible squeezing back pain in exertion, arrhythmias, etc. etc. etc. I think I am probably the only person in China who was deeply grateful for SARS, which closed the university where I teach, sent me home, and led to my diagnosis and treatment. So, ups and downs are normal and lead to missed and misdiagnoses a lot, I think.

I think most of us learn to embrace the good times and enjoy them and try not to push ourselves too much when we feel well, because we tend to pay for it big time later.

Since you are going to get another echo on Wednesday, why not talk with the doctor about getting off those ACE inhibitors. It sounds like you may need more beta blockers and possibly other drugs. I suggest that if you are going to Cleveland that maybe you can get a doctor there to consult with your doctor about how to make it safe for you to fly.

Obviously I fly a lot because of living in China, so a couple of suggestions: I have some trouble with chest pain on ascent and descent, especially in smaller planes. I assume that that is due to O2 pressure changes. Maybe for you being on O2 would help. That can be arranged if your doctor prescribes it. Discuss it with the airline.

Secondly, I always try to schedule my seat as far in advance as possible. I get the seat right behind the bathroom. There is a little leg room and a wall. I take my shoes off and prop my feet on the wall. That keeps the fluid from accumulating in my legs as much. It has worked wonders at reducing fluid retention on such a long flight.

In addition, I can get up without disturbing the person beside and in front of me, so I get up virtually every hour and walk the aisles to prevent clots and maintain circulation.

Finally, I know that there is a handicapped seat that you can request on long flights. It is primarily for wheelchairs, but it sounds as though you might need a wheelchair to get through the airport, so it might be possible to get it.

I hope this helps answer a few of your questions.

Rhoda

[Nigel]

Re: Ups and Downs

That sounds like a good idea. In the past, I’ve used a wheelchair to get around the airport and it worked out fine. My fear is that now my heart is larger, and I wonder how that will affect me in flight. I worry that if something happens, there won’t be anyone there to help.

Thanks so much, I wish you the best

Nigel

[Eileen2345]

Re: Ups and Downs

Hi Nigel,

They key for me is to pace myself and not get too excited or upset about something. I try to not sweat the small stuff anymore. The stress is not worth it.

I pace myself everyday. I listen to my body and I rest when I can. If I do not listen to my body's signals that tell me to cool it and take it easy...... I will regret it.

I have over done it before and had the "fatique hangover" for a few days. I will be wiped out for a few days. Not fun, I am miserable and depressed during those days.

Now, I tell people, including my children, "I cannot do everthing right now, I will do what I am able to."

As far as traveling goes, like mentioned, give yourself plently of time to get there. And I suggest using all the assistance you can get, such as wheelchairs, carts, everything.

**Edited to say: Maybe you can inform the airline personal that you have special needs. Maybe they can place you in an area that is near the flight attendents so that they can keep a watchful eye on you. Also tell them of your heart condition, they may be able to have a portable defibrillator on board (not that I think you will need it, but just for assurance). Also, drink water, traveling can dehydrate. Maybe bring some music to listen to or a really interesting book. Take some deep breaths, you can do this. We support you and are with you in spirit.

Please keep us posted as to what is going on.

Hugs -- Eileen

[Toogoofy317]

Re: Ups and Downs

Just a little tip to ease your fears.
All major airliners are equipped with AEDs along with in the major airports.

Mary S.

[Nigel]

Re: Ups and Downs

I just found out that American Airlines flights in the US all have AED's on board! I'm feeling a little better about this now.

Over that last few weeks, things between my girlfriend and I have gotten a lot worse. I really don't think she understands how disabling this condition is. When I can't work on the apartment, or clean something up, she gets so mad. I still think she's under the impression that HCM is no big deal and I'm fine.

Anyway, I wish everyone the best. The support you've all shown me has given me the courage to hopefully see a better doctor and talk about getting an ICD.

THANK YOU!

[kelly]

Re: Ups and Downs

Perhaps you should have your girlfriend read over the information on the website. Maybe if she had a little knowledge of the disease, she would be more understanding.

Good luck and keep a positive mental attitude.

Kelly

[Reenie]

Re: Ups and Downs

I do hope that your girlfriend sees the light. HCM is a real disease and just because you can't see the effects doesn't mean they don't exist. Take care. We're here for you.

Reenie

[Linda]

Re: Ups and Downs

Nigel, This is tough for both of you. I think you said your girlfriend is a college student? That would mean she's probably facing finals about now, just one more stressor. If you haven't yet talked to Lisa, please try to call her. You get a lot of support and answers here on the message board, but talking to Lisa one on one will be so much more specific to you. I think you will find much of the reassurance and info that you and your family need right now. Best of luck with your plans and please keep us posted. Linda

[Nigel]

Re: Ups and Downs

I’m going in for another echocardiogram today. Unfortunately the doctor I’m seeing doesn’t even specialize in reading echocardiograms (he’s an interventionalist). Having this condition has hit me blind in the face. I was told by many doctors when I was younger that “It’s probably just an anxiety disorder, you’re too young to have heart problems, its chest wall pain, you’re fine having a high E.F. is a sign of a healthy heart”.

I was so convinced nothing was wrong with my heart that I moved to Oklahoma and took at stab at starting a new life free from the worries and pain I had become so accustom to. Some days I’m full of hope and enthusiasm. But one days like these, I wish I could go back in time and fix whatever I do wrong. I feel guilty in a way... I feel like I’ve somehow done this to myself.

After hearing about sudden deaths, heart failure, surgery and things of that soft, I often find myself shaking in fear. I worry that I just won’t wake. It’s not so much the fear of dying myself, but leaving the one’s I love so much behind. I’m not ready to leave, there is so much I want to do and accomplish.

Sorry for the rant, it’s just one of those days. I’m scared of what the doctor will tell me this time around. You have all been so supportive and helpful.

Thank You,

Nigel

[Reenie]

Re: Ups and Downs

It's normal to be scared, especially when you're first diagnosed. Try to take a step back and breathe. Did you call Lisa today? Just to make you feel better, though, there isn't anything you could do to prevent this. It's a genetic disease and you were born with the mutation that causes HCM. Feel better.

Reenie

[Labbey]

Re: Ups and Downs

Hi again! I just wanted to say thanks to Nigel and others for bringing up the ups and down of different days. When i feel good I kind of go crazy and my husband is always telling me to slow down. But he doesn't get that when I feel good it feels great and I just want to do everything I usually can't. As someone else said, you do pay for it later.!! I am still learning this. It is hard to slow down when the heart is actually acting a bit normal!!! What ever a normal heart feels like!!!

I always thought it was just me. I too, have learned to just say no, I need to rest and I don't feel the need to explain myself anymore. You really need to do this.

I have not flown yet, since having the icd, but flew beforehand and was okay. You will be okay Nigel. Just listen to your body. I have learned this is a very effective way in thinking more positive.

Good luck ! You need to find the right doctor ASAP!!!

Take care,
Lisa A.

[Nigel]

Re: Ups and Downs

I just got back from the doctor… It’s official... I have non obstructive HCM. I just want to hide in a dark closet and cry. To be honest, I was really hoping they had made some error or read someone else’s echo (not that I would ever wish this one anyone else).

I might be gone for a few days, thank you all so much for the support. It’s been wonderful meeting such supportive people.

Nigel

[Reenie]

Re: Ups and Downs

We're here when you're ready to talk again.

Reenie