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YoungAtHeart Find out more about YoungAtHeart
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  • Coping with weather change?

    I am 18 years old and suffer with a severe form of HCM.

    I find every summer I suffer, last summer I was bed ridden most of the day as the humid levels where I live (UK-City) are so high! It makes me so cranky because all day I feel exhausted and walking anywhere is tough, even if I lose weight.

    Recently the weather has got warmer, but the humidity levels must be sky high because I am suffering terribly for it I am tired all the time, breathless walking a few steps, in constant pain and my tablets seem to be working less in the evening because my heart is racing all night! Just a few weeks ago I was feeling great, and I'm going on holiday in a couple of months so I'm praying I don't feel like this! However I'll be next to the sea (hopefully low humidity levels).

    I know to keep hydrated, rest etc but I am doing all that, how am I supposed to cope?!
    I have no surgical options and limited medication options (as everything is so high), however I will be seeing my cardiologist in a couple of weeks so I'll mention this.
    The reason I worry because the temp gets much higher than this, I'm afraid I won't be able to do anything!
    Last edited by YoungAtHeart; 06-09-2014, 01:59 PM.
    Diagnosed with HCM @ 6 years old.
    Father & 2/5 sisters affected
    ICD Implant in 2011
    Evaluation for Transplant in process.

  • #2
    Re: Coping with weather change?

    Sorry you seem to be feeling crummy (that is the scientific term). Sounds like you need to re-evaluate your meds and see if one (or more) can help with these symptoms. Its not uncommon to have to "switch it up" some over the years. Do keep us posted & hoping you get some relief!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: Coping with weather change?

      In my own experience with heat....The heat seems to cause me to retain water, get puffy i.e. I can't wear my rings and I get more short of breath......sort of like temporary heart failure...... On occasion my MD has increased my diuretic based on my weight. You might try keeping a morning and evening record of your weight for a week or so during the heat and take this info with you to the doctor. If fluid retention is an issue he may want to address that. I usually am pretty good at knowing the physiology of this stuff....but I'm not quite sure of the physiology of increased heat and humidity and it's effects on the heart.
      Maybe someone else will chime in.......if I have time I will try to research it later.
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

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      • #4
        Re: Coping with weather change?

        Hot weather used to give me problems as well. Decided to get airconditioning units in the living room and bed room. Feeling much better since. Spending time in cool rooms allows your body to get rid of excess heat. This way you can spend time outside without getting overheated right away.
        Some people say I don't have a heart, but my doctor says I have too much?

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        • #5
          Re: Coping with weather change?

          When I get overheated due to the high temperatures, my symptoms blossom into an ugly flower very quickly. SOB, fatigue, feeling very crummy, etc. And I live in Florida........go figure, I stay in airconditioning all day. However I was in Las Vegas a few weeks ago and it was HOT and DRY. It all but killed me, but I made sure I made it to the Rod Stewart concert!!

          Linda
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08

          Comment


          • #6
            Re: Coping with weather change?

            When I get overheated due to the high temperatures, my symptoms blossom into an ugly flower very quickly. SOB, fatigue, feeling very crummy, etc. And I live in Florida........go figure, I stay in airconditioning all day. However I was in Las Vegas a few weeks ago and it was HOT and DRY. It all but killed me, but I made sure I made it to the Rod Stewart concert!!

            Linda
            Onward and Upward !

            Diagnosed 4/07 HCM with fixed & dynamic obstruction
            Myectomy with resected cordonae tendonae 4/08 CCF
            ICD 10/08

            Comment


            • #7
              Re: Coping with weather change?

              Since the humidity and heat increase here, I can barely walk into work but I push myself. Almost passed out at my daughter's bday party and have had to take antibiotics for constant sinus infection and lasix bc retaining six lbs ofwater so I can empathize. I just keep pushing along hoping not to push too far. Coughing up bloody phlegm again so I pull back a bit but life requires energy so it is hard. Keep your chin upand dip into a/c as much as you can.

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              • #8
                Re: Coping with weather change?

                Three more tips:

                Wear all white clothes. This helps reflecting heat. I even notice the difference between a light grey and a white T-shirt when the sun is beating down on my chest.

                When you want to go out for your daily exercise or need to run some errands do it early in the morning when it's still cool.

                If you need to go out in the heat try walking from shade to shade. Watch where the shades are and if possible go at the time your route provides a good amount of shade.
                Some people say I don't have a heart, but my doctor says I have too much?

                Comment


                • #9
                  Re: Coping with weather change?

                  Thankyou so much everyone, it has been very hot lately yet surprisingly I have felt great, but when it is humid I'm not feeling all good so I'll be getting air conditioning and resting when the temp is highest during the day. I also think my bouts of hay-fever make me feel quite poorly... Thanks again
                  Diagnosed with HCM @ 6 years old.
                  Father & 2/5 sisters affected
                  ICD Implant in 2011
                  Evaluation for Transplant in process.

                  Comment


                  • #10
                    Re: Coping with weather change?

                    Do you take any medications against the hay fever ? If you do please check the instruction leaflet that comes with them. Some of them are contraindicated with heart conditions. Could be just the medication making you feel bad. Call the doctor and discuss switching to another medication if this is the case.
                    Some people say I don't have a heart, but my doctor says I have too much?

                    Comment


                    • #11
                      Re: Coping with weather change?

                      Okay, bear with me guys....but I have just spent several 90+ degree days here in Denver....and been dyspneic on exertion just wAlking to my car..... Unable to feel well at all without air conditioning. Those who know me know I crave understanding the physiology that is making me feel crummy.....So here is my theory on Heat and humidity.
                      When the temperature is hot, the blood vessels at the skin level dilate to try to get a cooling effect from the skin and the evaporating sweat.This dilation of the blood vessels, just like taking nitrates, or a hot shower....is the bane of HCM. The lower pressures in the blood vessels create a bigger pressure difference between the inside and outside of the heart.... Increasing obstruction, and back pressure in the heart and lungs.
                      Humidity makes it worse, because when the air is damp, we cannot have as effective cooling by sweat evaporation.. The sweat just stays on the skin and literally drips off of us in the heat and humidity together.
                      Doesn't change my need to stay home in the A/C but I just feel better if I understand.
                      Knowledge is Power..... Thanks for indulging my obsession with physiology!
                      Stay Cool!
                      After years of symptoms:
                      Officially Diagnosed HOCM 2006
                      Myectomy 3/11/13 at non-COE
                      Extended Myectomy 7/23/14
                      At Mayo with Dr. Joseph Dearani

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