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Shortness of Breath

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Elizabeth Find out more about Elizabeth
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  • Shortness of Breath

    I had a septal myectomy 2 weeks ago. Sometimes I run out of breath just walking from room to room or even talking. When does this get better? I know I am impatient in wanting to "get well". And is the concept of getting well or close to normal again a reality? Will I be able to train and ride horses again? I was told by my cardiologist not to start rehab for another 4 weeks but what source do I go to to get the info on what you can and cannot do for specific exercise for HCM?

    By the way Doug says to tell Lisa Hello. What a kind caring soul he is. EVERYONE at the Mayo in Rochester was so kind and understanding.

  • #2
    Re: Shortness of Breath

    Hi Elizabeth!

    I had my myectomy last August and remember all too well a couple of weeks after surgery wondering and questioning life 'post-surgery'! Especially right around 2-3 weeks after surgery, I felt very frustrated almost saying, "OK, enough, did the surgery, did the first few weeks recovery and now I'm sick of this process..." Open heart surgery can play havoc on your overall sense of well-being, it's very normal afterwards. One of the things that I read about any heart surgery is that the brain actually undergoes a slight 'trauma' as well which just throws us all off even keel.

    As for the shortness of breath (SOB) a number of things crossed my mind in regards to it. First off, if you are finding that the SOB is worse now than right after surgery you might check in with the doctor. Beyond that go easy on yourself, you are only 2 weeks post-open heart surgery. The urge is there to want to think that you should be back up to speed and 'normal' right away but your heart and body are going through tremendous amounts of healing right now. Some of the SOB can be caused from your body just trying to recuperate. It's kind of like after you've had the flu or other illness and your body needs time to recover. As hard as it seems you need to give yourself the full/minimum 6 weeks recovery.

    Regarding returning to normal - again, there's nothing quite like major surgery to throw your whole perception of life out of whack is there? Yes, normal is around the corner and as the weeks of recovery progress you should find it comes almost 'sneaking' up on you.

    In relation to training/riding horses (how awesome an activity is that? I'm jealous!) I can't imagine that you wouldn't be able to but in terms of activity levels you will need to have those discussions with your HCM specialist. There are general guidelines that we all tend to follow for exercise, no weight-lifting, not big on running or super-aerobic activities, etc. but check with your doctor for your specific guidelines. Cardiac rehab is a fabulous thing to do for recovery. For now, has the hospital given you home rehab exercises to be doing? It should be light stretching and walking throughout the day. Doing those activities will help build up your endurance and help return life to normal. Once you enter into cardiac rehab the staff there will work with you and the guidelines from your HCM specialist to build and continually adapt your program just for you and how your heart/body is responding. This can be different for each person. Like for me: I am building up my time on a treadmill but using also a recumbant stationary bike, a seated stepping machine and then use resistance bands instead of weights for strength training. Someone else will have a different set of exercises. I find using a exercise heart rate monitor (that is EKG accurate) at rehab and on my own helps me keep my heart rate in check and helps me to track how I'm doing.

    The main thing to remember is you are recovering right now. It's frustrating when you're typically an active person but hang in there, you're doing great and each day is one day closer to regular activities (I was just looking foward to picking up a gallon of milk at the end of 6 weeks! Actually my big goal was being able to pick up my daughter again!).

    I hope this has been helpful, please let me know if I can be of help otherwise!
    All the best,
    Lynn
    Lynn Stewart
    HOCM 4/2002
    Cleveland Myectomy Crew 8/2002

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    • #3
      Re: Shortness of Breath

      Hey again,

      You'd think after such a lengthy post I would've remembered everything to put in but I wanted to add one more item re: SOB and post-surgery. In addition to the fact that you've just had open heart surgery that your body is trying to regroup from, you've also been pumped full of all kinds of faulous drugs. While the drugs are for the most part out of your system now, you are still no doubt feeling the effects of them. Many of which can cause your system(s) to feel sluggish and not acting as they typically do causing all kinds of wonderful effects on your body.

      Again, hang in there, you'll soon start to feel more like yourself!
      Lynn
      Lynn Stewart
      HOCM 4/2002
      Cleveland Myectomy Crew 8/2002

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      • #4
        Re: Shortness of Breath

        Elizabeth, Lynn has really given you a tremendous amount of good info. You really need to give yourself time to recover, two wks is not long at all. I know others will give you some of their stories and I'm sure you will feel less frustrated after hearing them. You will probably realize you are doing very well. If the shortness of breath is new, increasing, accompanied by cough or fever, call your doctor. It never hurts to be cautious. Best wishes, Linda

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        • #5
          Re: Shortness of Breath

          Thank you Linda for your lengthy reply. It's such a comfort to hear from someone who has already been through this part. This all happened so fast. I was diagnosed finally after years of being told I was out of shape go out and get some aerobic exercise. Then 2 months later wham bam surgery!

          I went to the Dr. today for irregular heart beat and will wear a monitor for a day to see how things are going. But he said pretty much the same as you about SOB and it being early after surgery yet to expect so much. Two steps forward. One step back.

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          • #6
            Re: Shortness of Breath

            Thank you BOTH.

            I am going in for my myectomy in just over a week so reading personal accounts of this really helps with the unknown. Thanks.

            Doug
            NEMC's (Boston) First Myectomy 7-22-2003

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            • #7
              Re: Shortness of Breath

              Doug, Be sure to check in with us before you leave, you'll have lots of prayers coming your way. Keep us posted, we'll be anxious to hear progress reports. Elizabeth, glad you saw your doc. Give yourself time and you keep us posted too. Now you have Doug watching for your reports, so I think you will be able to encourage one another. Linda

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              • #8
                Re: Shortness of Breath

                Hi Doug. Surgery is scarey to face no matter what kind it is, but this surgery will give us a much better quality of life. I'm in my 3rd week of recovery and am amazed at how far I have come. It can be frustrating at times, mainly cause I'm so impatient, but each day is better than the one before. I will be praying for the doctors and for your courage to face the trial before you. Good Luch and God Bless.

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                • #9
                  Re: Shortness of Breath

                  Thank you Elizabeth!

                  I can say I am basically petrified right now. I know you can relate to the feelings of unkown prior to surgery of this magnitude. I am still working but as each day goes by I find I am less and less effective because my mind wanders. One of the things I find myself thinking about is how good am I going to feel. I don't think I know what feeling good feels like anymore. Well, I am glad you are doing better each day and keep up the good work. I will be in touch again.

                  Doug
                  NEMC's (Boston) First Myectomy 7-22-2003

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                  • #10
                    Re: Shortness of Breath

                    Elizabeth - I'm glad that my message was helpful to you and hope that as each day passes you find yourself feeling stronger and better! It can be a slow process but you're getting there!!

                    Doug - all the best to you as you come up on the date of surgery. It is a scary time I well remember. If it helps, the morning of surgery I was actually very calm (and I'm typically a nervous person by nature), a level of acceptance just came over me. Everyone at the hospital (BTW which one are you headed to?) understands the stress of surgery and will do their very best to help you through each step. Just keep your eye on the 'prize' of feeling better in the end and do keep in touch on the board as you can!

                    Thinking of you both and sending prayers your way!
                    All the best,
                    Lynn
                    Lynn Stewart
                    HOCM 4/2002
                    Cleveland Myectomy Crew 8/2002

                    Comment


                    • #11
                      Re: Shortness of Breath

                      Hi Doug and Elizabeth,

                      I had my surgery last November at Cleveland. I also remember being impatient, always trying to push myself a little more every day. There would however be times where the comfy chair was a welcome sight! It is easy to tire yourself while you are recovering. Don't overdo it but don't be a couch potato either. For me, I first noticed the ability to breath easier by the end of my hospital stay. It took a full six weeks before I had healed enough to start noticing the effects of the surgery.

                      Was it worth it? YES!
                      Was it scary? YES! Right up to the point they put me under.

                      my only regret is that I wish I would have done it sooner.

                      Bob
                      Cleveland Myectomy Crew
                      Member since November 2002

                      \"Chance favors the prepared mind!\"

                      Comment


                      • #12
                        Re: Shortness of Breath

                        I have a little story that just may help.

                        About 2 months ago a friend of mine was having a myectomy, she expected to leave the hospital feeling "all better"...ok maybe she know a few days of recovery was needed but she really thought it was going to be quick. 1 week out she calls and says why done I feel better yet. My reply "give it time"...at 3 weeks she called "why dont I feel better yet?"
                        my reply "they just cut open your chest... 3 weeks ago...you are human you need to heal...give it time. If at 2 months your not feeling better then have a long talk with the doc".
                        Last Wendsday she showed up at my front door having traveled from England to NJ to attend our meeting...it had been 2 months since here myectomy... I said "told ya so "

                        It takes time for the body to heal. Help it by doing the right things..eat well, walk, get rest and take care of yourself.

                        Let us know how you are doing...we are always here for you!

                        Lisa
                        Knowledge is power ... Stay informed!
                        YOU can make a difference - all you have to do is try!

                        Dx age 12 current age 46 and counting!
                        lost: 5 family members to HCM (SCD, Stroke, CHF)
                        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                        Therapy - ICD (implanted 97, 01, 04 and 11, medication
                        Currently not obstructed
                        Complications - unnecessary pacemaker and stroke (unrelated to each other)

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