Decompensating in the heat

It's my first post! So happy to find a forum where my husband and I can ask questions. We feel young and alone in our situation so it is so helpful to find a community of people that understands what we are going through.

A little background:
Hubby at (33) was diagnosed with idiopathic cardiomyopathy almost 2 years ago. EF was 35% at the time. He had ZERO symptoms and we discovered his heart condition by chance at a physical. Last summer he began to exhibit symptoms.....extreme fatigue, tiredness, loss of breath. Within 3 months he went from crossfitting 5xs a week to barely able to walk from the bedroom to the living room. Heart rate was in the 40's. Pacemaker/ICD was the doctors solution so had one implanted Nov. 15, 2013 and within minutes of the surgery he was COMPLETELY normal!!!! It was a miracle.

We are in Texas and the temperatures have just started to rise along with the humidity and he is suddenly having "bad" days. He is just tired all of the time. It's not near as bad as before PM/ICD, but I am wondering if this is just a matter of adjusting his pacemaker settings? The reason I suspect settings might solve the problem is because if he gets a dose of caffeine via coffee or a coke his heart rate rises some and he feels better albeit for a short period of time. But, I wonder if maybe it's the humidity. We've been careful to keep him indoors, but it seems that even a couple of hours in 85 degree weather with minor exhertion is enough to wear him out the rest of the day.

Would love your feedback.

2 Comments

So helpful

by vivi2002 - 2014-05-27 04:05:03

Thank you for your responses. His pacemaker settings were checked in early April. When we told the EP about this symptoms that come now and then he said that because he felt so bad before the PM and so great after PM he may just be re-adjusting to his new normal now that the curve isn't as steep??? He is under the care of one of the best EP's in houston as well as a patient with the Heart Failure and Heart Transplant Unit of St. Luke's Texas Heart Institute. I feel like their reasoning was clear, but I also feel that they are used to dealing with older patients that may not be as active.

All that said, he IS on Coreg, Ramipril, and Iow dose Aspirin and I never thought about his medications affecting him differently in the heat. I will definitely ask about that.

He drinks a cup of coffee in the morning and another in the afternoon and water at all other times so I THINK he is well-hydrated, but it is so hard to know in this humidity. That could also be the case.

Tracey, LOVE the idea of drinking coconut water post workouts!

Thank you guys for the information. He is the love of my life and I love taking care of him, but it is so scary when he doesn't feel right. He is so active and fit so when he is down, it makes me worry a lot.

heat

by Tracey_E - 2014-05-27 10:05:54

Is he being extra careful to stay hydrated? The hotter it gets, the harder it can be to get enough fluids, esp if he works out hard. Dehydration symptoms are similar. I am more sensitive to heat than my family, and my stamina plummets and I get dizzy. I ran an adventure race on Saturday. It was 70's for the first half, climbed past 85 and was crazy humid for the second half. I finished, but took a lot more breaks and struggled more once it got hot.

You might want to have a conversation with his dr and tell him what's going on, mention that caffeine helps. They can raise the minimum rate some, that might help him feel better since caffeine does. It's not big deal to try a new setting, then go back if it doesn't help, you have nothing to lose. Normally heat is not related to pm settings (which controls only how fast the heart beats) so it could be a coincidence but you never know.

Keep in mind caffeine dehydrates so you need extra water to make up for every caffeinated drink.

I don't like sports drinks because they're full of chemicals and sugar, but I love coconut water post-workout and on hot summer hikes. I hate the way it tastes, I either use it as the base in a protein smoothie or mix with seltzer, lemon juice and a bit of stevia so it's like a fizzy, less sweet gatorade. Anyway, I feel it hydrates faster than plain water after working out, and it's full of potassium.

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Since I got my pacemaker, I don't pass out anymore! That's a blessing in itself.