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3 steps forward 2 steps back.....

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JillC RN for over 40 years, MS degree in Respiratory Nursing, Worked surgical open-heart ICU for 18 years in Chicago.. After years of symptoms finally diagnosed with HOCM in 2006. I retired from nursing 2012 due to HCM and had septal myectomy at Local hospital 2013, Redo myectomy Mayo Clinic 2014. Now doing well. Find out more about JillC
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  • 3 steps forward 2 steps back.....

    From a non- marathoner, 5 months post - myectomy.....Well I just thought I was the Golden Girl ....10 weeks post op, I was going on 30-40 min walks almost every day......Then all of a sudden the end of November I hit a wall.....I could barely leave the couch....sleeping 11 hours a day ... (And of course feeling sorry for myself)The MDs found I was anemic and I started iron therapy......but I was anemic at 10 weeks post-op so I don't think I can blame that.....Disheartened,12/23, I e-mailed Steve Ommen at Mayo. He was so kind, and though he could not explain the great variation in my exercise tolerance, he honored my fatigue and gave me specific suggestions to re-start my walking program. Start with 10 mins twice a day.....increase gradually....to 20 min twice a day before going to the 30-45 per single walk. "If this does not work we will bring you back in for some more definitive testing,"....This made me feel validated....as I still sometimes think I am just lazy, crazy or stupid! LOL
    I'm posting this just to verify the fickleness of HCM both before and after myectomy. I feel like a baby starting over ..... But I am up to 12 mins twice a day......also My local cards put me on some lasix for fluid retention. I'm feeling better ....... No marathons in sight but shooting for 15 mins twice a day next week!
    Onward and Upward!!
    Last edited by JillC; 01-02-2015, 01:29 PM.
    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

  • #2
    Re: 3 steps forward 2 steps back.....

    Yes, you are right, confirmation that we are not crazy is sometimes all it takes to regain our equilibrium. There are some things that are just unexplainable. Keep up the good work Jill!
    Onward and Upward !

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

    Comment


    • #3
      Re: 3 steps forward 2 steps back.....

      Jill - Not to put a wet blanket on things, but we tend to assume that the surgery results will be spectacular, and sometimes (a small percentage) they are not. We have one moderator that after surgery struggled with energy and exercise tolerance and feeling that "this is as good as its gonna get". But they continued to challenge their doctor and through trial and error, they were able to adjust the meds to correct this issue. But that may not be the case every time. I just wanted to say to not give up and keep trying. You understand that HCM is fickle, but we need to remember that for a small percentage, a myectomy is not always enough to bring relief of symptoms - I really wish it was!
      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


      • #4
        Re: 3 steps forward 2 steps back.....

        Marc, I'd be interested in discussing the med changes that moderator went through to deal with fatigue and exercise intolerance....if you might put them in touch with me through PM.
        This "fatigue" thing seems to be the bastard step child that no one(in medical field) want's to talk about. They understand getting SOB when you exercise but not being able to even make the effort to go for a walk....or having your core muscles start to ache so badly when you go for a walk you have to stop after 15 mins....Stumps them and they tend to blame the victim!
        I did get off all beta blockers before surgery, they fatigue me terribly....Now I am on Verapamil 120mg Q 12hrs.I've been on Verapamil since I was diagnosed. We tried to decrease the verapamil about 6 weeks ago and I had a run of SVT and frequent multi-focal PVCs....so we canned that idea.
        On a positive note.....I have little to no chest pain, I can eat a meal without having to rest for 2 hrs afterward, I have no heart murmur anymore, and no pounding arrhythmias, I can also walk up a flight of stairs without SOB.....ALL post-op improvements.....So...I'll just keep taking baby steps and see where it goes........Not sure what "further definitive testing" might be.....I've never had a VO2 study....maybe that's what Steve meant.
        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

        Comment


        • #5
          Re: 3 steps forward 2 steps back.....

          Any changes in your meds recently?......will post more on a recent experience later....in the mean time..grabbed one of the thoracic surgery texts from the family library and permit me to offer a way of estimating VO2 without doing the actual test which they are VERY cautious about giving to patients with preexisting cardiac or pulmonary issues:

          Screen Shot 2015-01-02 at 5.32.10 PM.jpg

          Comment


          • #6
            Re: 3 steps forward 2 steps back.....

            Nope, no med changes...I remember that formula (at least it looks very familiar) from graduate school. I'm not sure what one would use for a max HR when on beta blockers and/ or calcium channel blockers though.
            I wouldn't say that the VO2 test is "routine" at HCM COEs but is done quite often. The HCM heart's use of oxygen can be extremely distorted based on the thickness, the amount of muscle displaced by fibrosis, the mismatch of supply and demand ....... I "think" and I haven't read enough, that it can point towards the heart as possible source of fatigue rather than deconditioned skeletal muscles....at least that's what I would like it to tell me.....LOL
            I understand The VO2 test is a biggy in looking at a failing HCM heart for possible listing for transplant.
            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

            Comment


            • #7
              Re: 3 steps forward 2 steps back.....

              The information I have read suggests that you are absolutely correct with respect to the VO2 test being used for transplant candidates......they also seem to use it for candidates for LVAD implantation either as a bridging technique while a patient is waiting for a heart transplant or as permanent solution for a patient that isn't a viable candidate for a transplant.

              I am out for dinner...may post some additional on VO2 when I get back home.

              Comment


              • #8
                Re: 3 steps forward 2 steps back.....

                Oh, Jill, I am so sorry to hear about your setbacks. I just mentioned to my husband today that people on HCMA forum have a few steps forward and a few steps backward after surgery. So, it was a surprise to see you use similar words. It sounds as though overall you feel a bit better, though, so cling to that while you sort out the rest. I know it's easy to think it's all in your mind but it's not. We feel how we feel whether medical science has an answer for it or not. I'm hoping they find some relief for you soon. I'll keep you in my thoughts.
                At least 5 years of symptoms.
                07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                09/30/14: Tested at Cleveland Clinic (Ohio).
                January 2015: Approved for surgery.
                03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                Comment


                • #9
                  Re: 3 steps forward 2 steps back.....

                  Jill, not sure what your hemoglobin is but at the end of October I was SOB, no energy, brain felt fuzzy and I was sure my heart was the culprit. Well, my hemoglobin was down to 8 and my iron stores were empty. I did end up with 2 units of blood, but the GI guy at Mayo told me 10 years of Prilosec was to blame. Took me off of that and this week my labs showed my iron stores are returning. I feel great again. Good luck and hang in there.
                  Midge

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.

                  Comment


                  • #10
                    Re: 3 steps forward 2 steps back.....

                    Hi Midge, My Hgb was 11 and like you my iron stores were extremely low. I started on iron 4 weeks ago with a recheck on iron stores and H&H in a couple weeks.....so it may be part of the equation....A little iron, a little lasix, a back down on intensity of exercise...I think I'm moving in the right direction......Glad I didn't get so low I needed transfused, but here in the Mile High city, even a Hgb just 1 gram below normal can have an effect on exercise tolerance especially with HCM and post- op recovery on top of it.
                    Thanks for your post.
                    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

                    Comment


                    • #11
                      Re: 3 steps forward 2 steps back.....

                      Yes, I did hear from my doc that one can only stay on proton pump inhibitors fo a month. Lots of damage, for me it was hip and muscle deterioration. Good to know that culprit is the cause of some bad things and to get the word out.
                      HOCM diagnosed Mayo Clinic Aug. 2010

                      25 mg of atenolol.

                      Comment


                      • #12
                        Re: 3 steps forward 2 steps back.....

                        Jill, sorry to hear about your setback. You mention being in the mile high city, could the altitude be a part of your problem? I know it really affects me. Is there a way to determine how much of an issue it is?

                        Comment


                        • #13
                          Re: 3 steps forward 2 steps back.....

                          I've been living at this altitude for 26 years....and yes, even before surgery, I had less symptoms at sea level. But, it's where I live. I have had my oxygen levels checked and I don't need oxygen. So that's about all I can do in the altitude arena.......One thing though that is true that I am working on is the anemia.....the affects of anemia on exercise tolerance are much worse at altitude....it's just weird that I was anemic the whole time post op, but didn't crash until months later. I am having a few more good days after a month of iron supplements so I will keep working on that. Thanks for your thoughts.
                          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

                          Comment


                          • #14
                            Re: 3 steps forward 2 steps back.....

                            hi keep it up iwas diagnosed as a diabetic day before surgery 4 weeks out i walk 35 min a day 1800 cal a day less than 1500 litres fluid a day everything is finaly going good after all complications i had 3 days post op cardioverted 2 times a fib, infection chest tube wounds just having hard time sleeping but have severe obstructed sleep apnea.but i remain positive i overcame the worst of it so will you. i look forward to a better life now.also have an hocm expert following me.i havent eaten anything fried since i left hospital its like a baby starting over with new taste buds good luck im sure you will do verry well.

                            Comment


                            • #15
                              Re: 3 steps forward 2 steps back.....

                              Anemia can be so debilitating. A few years back, I actually developed Pica from being so anemic from fibroids, luckily I was only eating ice, but I developed such a strong addition to it, and it amazingly went away as soon as my iron levels went up! The anemia also had a negative effect on my heart. That's when my Topral and Verapamil increased. So take care of that anemia, and I hope you're feeling better soon.

                              Comment

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