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A Few Questions for the Myectomy Veterans

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  • A Few Questions for the Myectomy Veterans

    Hi All,

    I have a call into CCF about a few of these, but it's always nice to hear from those who have actually been through the experience as well. Thanks in advance

    The Sternum Pop

    I know that the popping i feel in my sternum is perfectly normal and expected, and will go away in time. However, on the day of my release, one of the docs did warn me that i need to keep this to a minimum in order to facilitate healing. I'm not quite sure how to avoid it though, given that it happens pretty much anytime i stand up, bend over, rearrange myself in bed, open a window, etc. Any ideas?

    Nexium/Colace

    I was told to take both of these for 30 days following the surgery. I know why the Colace is prescribed, but since things are 'moving along' quite nicely in that department already, i would like to stop taking it. (Straining is not an issue.) But why the Nexium? Anyone know why this is prescribed following a myectomy? My insurance won't cover it and i really can't dish out the 160 bucks right now to pay for it myself. I'm not having any problems with acid or anything... my GI tract seems to be back to normal at this point.

    Sleeping

    I've been sleeping on my side for several days now, which has helped tremendously since i'm just not a very good back-sleeper. As long as i hold a pillow tight to my chest as i'm falling asleep, there is little or no discomfort. Is there any reason why i shouldn't sleep on my side though, apart from comfort issues? It occured to me today that maybe i'm supposed to be sleeping on my back for some reason.

    Fluid Issues

    I am unfortunately right back to having the same fluid issues i had prior to myectomy. Can a certain amount of this be attributed to the surgery itself, and may go away in time? I'd really like to think that the myectomy is going to correct this situation permanently, but i'm kind of going in the wrong direction here.

    Tachycardia

    This came right back after the surgery as well, and i am once again taking the atenolol. Will my need for this dwindle over time as my heart heals, or do most people still require heart meds after a myectomy?

    A-Fib

    For those of you who experienced this post-myectomy, did it come pretty early in the recovery process? I'd like to start relaxing a bit and begin to feel like i'm through that stage.

    Thanks for any input you may have. I'm continuing to be quite pleased with the recovery, and have high hopes that after all is said and done, i may see some relief from symptoms here. Only time will tell i guess. I definitely don't want to jump the gun on trying to guess the success or failure of the surgery this early in the game.

    Jim
    "Some days you're the dog... some days you're the hydrant."

  • #2
    Re: A Few Questions for the Myectomy Veterans

    Hi Jim,
    Sternum pop, remember to brace youself ; crisscross your arms when you change positions. It stops at week 3-4. The calcium formation is in place , the process then to solidify the knit of the bones.
    The colace is a good idea just to keep things smooth if it is too much ask the doc if you can cut back.
    The Nexium, do you have GERD, esophagitis , a duodenal ulcer? He is prescibing it for one of these? or to prevent it if you are susceptable .
    Ask if there is an OTC equivalent . The docs don't always know how limited our financial situations are.
    God bless you sleeping on your side so soon. If it does not hurt then I think it should be ok, it may be contributing to the pop however., not sure but lying flat seems to be a better position for keeping the whole alignment thing in order. I tink you guys are different there , less anatomy to pull on the chest. My B-I-L was able to side lie earlier then I . It still hurts me a little 8 months later.
    Talk to your doc about the fluid. Some of us need life long management others improve. Be carefull you are not getting dehydrated or that you are not demanding so much from your healing heart that it can't heep up . The tacchycardia could be easily comntributing. I was on atenolol 50 post op. Then up to 100 mgs 3 weeks later now at 200 mgs. The 200mgs is for the chest pain.
    A-fib occurs in 30 -40% post -op heart surgeries. Usually within 4-5 days post-op. I was at 5 days post-op. Then 2weeks again. Remember now I was being treated ongoing after the 1st episode with an anti- arrythmic. After 3 months , it was stopped and no more a-fib. If it has not happened by now your chances are slim that it should start. Just remember to take it slow , recovery is different but similar for us all , common denominator ; it takes time.
    Ihope this has helped , your doc will shed more light on this picture. Rest well . Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

    Comment


    • #3
      Re: A Few Questions for the Myectomy Veterans

      Thank you Pam for your most hasty reply

      I did not know about crossing the arms to help reduce popping. Great tip! As far as the Nexium goes, i have not had any problems in this area in the past, so it must be something preventative. I'll be sure to ask about the sleep position issue as well. I sleep much better on my side, but i don't want to risk doing any harm or prolonging the healing process either. Good point about the fluid retention. Although i seem to be able to tolerate a good deal of activity at this point, perhaps the fluid is a sign that my heart isn't keeping up quite as well as i had thought. I may need to just slow down a bit and give it more time.

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #4
        Re: A Few Questions for the Myectomy Veterans

        Jim,

        I can only speak from the wife of someone who was recovering

        The popping I think occurs until the bones are healed. (when it stops
        for a while you are then probably ok to drive ). I know that the
        "cough pillow" was something that felix would like to burn now, but
        he used it often.

        for the nexium, I cannot remember what they perscribed for felix
        that was also very expensive, but similiar I think. Maybe he can remember
        what it was, but we found out it was not absolutely necessary. BUT i do
        remember when he had all those bouts with nausea we took whatever
        it was, and then added in all kinds of stuff as pepto, etc. You dont seem
        to be having those type of issues though.

        Felix could not sleep on his side for a while, but he started to do so
        when it felt comfortable. I dont think there is a restriction there, except
        when it feels right.

        My friend's dad's sternum never had healed properly. she came to find out that he started the rowing machine before 6 weeks time. so dont
        do that

        I will ask felix to respond here. he should be better at answering these things. I only had to listen to him complain and run to the drugstore
        all the time I did not go thru this.

        Comment


        • #5
          Re: A Few Questions for the Myectomy Veterans

          Hey Jim-
          Welcome Home! So glad, you're doing so well! I'll share my experience, regarding your questions.
          STERNUM POP - went away about week 4. I was taught to cross my arms, in front of my chest & bend forward as little as possible.
          NEXIUM/COLACE - I have GERD, so the Nexium was SOP & I needed the Colace.
          SLEEP POSITION - I had to sleep pretty upright for about 2 weeks, then slid down onto my back. I'm also a side sleeper, so it took adjusting, but I rarely sleep on my left side, usually my right with a small pillow against my chest.
          FLUIDS- it took about 2 weeks, till I was rid of the excess surgical fluids, but I always had a fluid retention issue & still take a very hefty dose of diuretics - wish I did not need them!
          HEART MEDS - I continue to take a hefty dose of these as well (Toprol 200mg), plus others
          A-FIB - I think the initial days after surgery are the most likely, my AFib was on day 4 (Meds did not convert me, so I was Cardioverted on day 5) and day 6 (I converted with just meds), then it never happenned again. I think this is usually an event tha occurs very soon after Surgery. I also had a V-Tach event on day 3 after my ByPass.

          All signs point to you having a Super Recovery! So what if you have to take Meds (other than $$), in a couple of weeks, you'll be able to walk for miles & not be SOB! Just go slowly-so you heal properly. The idea is to "get to the Finish Line", not how fast you get there! (That was for my benefit, also, I'm so anxious to do, do, do )
          BE WELL
          RONNIE

          Comment


          • #6
            Re: A Few Questions for the Myectomy Veterans

            Jim...I'm glad you asked all those questions. I could relate to all of them. It's been almost 5 weeks since my myectomy, and it's amazing how much better I feel. The one thing I get that you didn't mention is depression. I think I am just tired of sitting around doing the same thing everyday. But the strange thing is I really don't want to leave my house. Hopefully this will pass. Next Tuesday is my check up with my local Cart. Doctor. If I get to drive soon, that will take alot of my mind.

            But my main concern is that I will be able to go on my hunting trip to upper Saskatchewan in Canada in the middle of Nov. The Doctors all said I should be fine by then. I was going to put off my surgery until after my trip if I couldn't go. I have been planning this trip for 3 years.

            Thanks again for asking those questions. And good luck on your speedy recovery.

            Patrick Ekardt
            (Tigger1)

            Always remember PMA, positive mental attitude.
            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

            Comment


            • #7
              Re: A Few Questions for the Myectomy Veterans

              Ok Jim

              The Popping i was told that it is ok for it to pop as long as it doesn't do it while sitting and doing nothing, mine popped daily some times several times a day i'm sur it did it more i just got use to it

              Stay on the colace, i did for the first 30 days

              Nexieum i bought pepcid complete and it did just fine, that is what the doc had me on before surgery when i needed it

              It is better to lay on your back for at least 30 days to 6 weeks for the healing process, the pillow is a good idea, i put a body pillow at my back and layed half way on my back and half way on my side and that helped me, it also helped wih getting up. be well my buddy

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Re: A Few Questions for the Myectomy Veterans

                Thanks for all the replies everybody,

                Today is Day 19 post-myectomy and I wanted to ask a few questions if that's cool...

                My sisters and brothers are visiting from various parts of the country this week so i've been away from home having a mini vacation of sorts with all of them. I've been trying to do as much walking as I can per Dr. Lever's instructions. The man said to walk, walk, walk.... so I've been walk, walk, walking

                Earlier this week I was able to take long walks every day, some of which even involved some steep climbs. There are also two flights of stairs at my folks house that I've been climbing a dozen or so times per day, and I've been trying to stay as active as I can... going to movies with the family, taking small trips, playing cards, visiting with relatives, playing with the nieces and nephews, etc.

                I would think at this point I should be able to do these types of things without too much trouble, right? But i have to tell you, for the last three days I have been simply exhausted, even right after waking up, and I'm getting a lot more chest, neck, and headache pain than I even had when I was first released from the hospital. What gives? I thought exercise was only supposed to help my recovery, but i'm starting to feel like i'm going backwards here. Walking several miles a day at this stage should not be so exhausting, should it? Exactly how much should i be able to do right now? This is driving me nuts.

                I'm still getting a LOT of popping, crackling, stiffness and soreness in my chest and neck, especially in the morning. I'm trying to sleep as best i can, but i'm a very active sleeper, and find myself waking up in all kinds of painful positions. In the hospital, it really seemed to help to take those two percocets right before bed. Once i got back to PA though, my pharmacy said they couldn't fill an out-of-state prescription for percocet, so i haven't had any painkillers since Day 6.

                I can ask my local cardio for a prescription i guess, but my question is... has my window of opportunity now passed? Should i even still be having this kind of pain now? I'm thinking maybe my doctor won't even write me a prescription this late in the game because he'll feel that by Day 19 I shouldn't need any? Is it unheard of to still need some pain management in weeks 2 and 3?

                I appreciate any advice you can provide. Perhaps everything i'm feeling is perfectly normal and i'm just having a bad couple of days, but some reassurance would sure be welcome.

                Thanks much,

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Re: A Few Questions for the Myectomy Veterans

                  Hi Jim,

                  I thought I would try to offer some thoughts about your questions this morning along with others that I hope will chime in as well.

                  First of all, I can't believe it's already been 19 days since you're myectomy, I'm so glad that you are feeling overall so wonderful! I'll lend my '2 cents worth' on things for you but remember, you can always call up to CCF to check-in on the symptoms you are having and you might want to just to check-in.

                  You've been so lucky to feel up to being so active ever since your surgery (I'm jealous!!!!) I'm sure that suddenly having some pains and symptoms slowing you down is quite baffling. However, though I'm never one to dampen the spirits and body's persistance to recover and return to normal living, you might be experiencing these symptoms because the body is trying to remind you that in fact, you are only 3 weeks post-op. Despite how great you do feel, you did have major surgery only 19 days ago and unfortunately it does take a full 6 weeks to get the biggest part of healing to be completed. I guess what I'm trying to say is, don't forget that though you 'feel great' your body is still doing an enormous amount of work trying to heal and recover and for sure, some days/weeks will go more routine than others. So my suggestion is to keep on trucking with doing as much walking as you can but to be aware that sometimes your body will 'trump' you and tell you to 'take a seat' during recovery!

                  I hope this doesn't sound like a lecture, I just wanted to give my third-party opinion. I would still check in with CCF and also I would see if the good doctor could call in to your pharmacy the prescription to avert this 'out of state' script business...it's still quite normal to need pain meds at 3 weeks out from surgery.

                  Take care,
                  L

                  (as I stretch and hear my sternum pop...nearly 2 years post-op )
                  Lynn Stewart
                  HOCM 4/2002
                  Cleveland Myectomy Crew 8/2002

                  Comment


                  • #10
                    Re: A Few Questions for the Myectomy Veterans

                    Ok Jim

                    Here it is, Slow Down a little here bud you have to take it a little more easier on your self i know you want to get out there and run a marathon but that is going to take some time and remember you still have HCM you are still going to have good days and bad days maybe not as often maybe but they are still going to be there. Dr. Lever wants you to walk not climb hills there is a difference you know try taking it easy for a couple of days and if you don't feel better by monday call the doctors office and talk with them, i think all this pain is your bodies way of saying take it easy they just cracked my chest wide open, hope you start feeling better Jim and remember you have restrictions i did for 3 months Buddy

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      Re: A Few Questions for the Myectomy Veterans

                      Hi Jim,
                      I guess I’ll climb on board and echo what the rest are saying. Three weeks is not six weeks, or three months either. Pain is your body’s way of saying, “Hey, I’m healing here – Let’s not overdo it shall we?” I guess you’ve used up your reserves of energy. Now you have to rest and allow yourself some time to recover.

                      By all means check in with Dr. Lever. If nothing else, you can address your concerns and he can give you confidence in where you’re at. About the percocet, if he still feels you could use it, ask him to contact your Cardio or PCP and have them write the prescription as an in-state doctor – or at least take the script you have to your doc and have him rewrite it.

                      Walk, walk, walk is pretty standard instructions for heart patients who have had their chest cracked open, but where does climbing stairs and hills all day fit into the picture? I know you’re chomping at the bit, but healing takes time no matter how impatient you get.

                      Jim, I, and the rest of us, want very much for you to get as close to 100% as possible, but you still have HCM, and overdoing can hurt the process. If prayers and good wishes can help, you sure have that. Check in with the CCF, and do what the good doctor says.
                      Burt

                      Comment


                      • #12
                        Re: A Few Questions for the Myectomy Veterans

                        felix is really busy today working on my 40th bday party, so I wont
                        be able to get him to the computer, but I will say taht I remember he
                        feeling tired all the time and he wondered if he would ever get better.
                        he kept his walks up, but some days , 3 weeks out, he was wiped! he
                        could not understand why he felt like he was going backwards instead
                        of forward in teh recovery. The recovery from teh myectomy is like
                        this.

                        I will ask that he send you more details... dont be afraid to take the
                        percs if you need them. probably a whole lot more feeling is coming
                        back to you.

                        take care

                        sandy
                        Fx

                        Comment


                        • #13
                          Re: A Few Questions for the Myectomy Veterans

                          Jim,

                          I don't suppose you've ever driven from New York to Atlanta.
                          Well, once you take the beltway around DC and you get past the dense metropolitan area into Virginia, 5 hours have gone by. You still have 10 hours to go.
                          Thats where you are today. You've gone through some difficulty, but there is still a long road ahead.
                          There is a very small hill in my neighborhood. Its about 50 yards longs, with a rise of maybe 50 feet. Even after 5 weeks, I still got out of breath on the puny hill.
                          Today, I probably wouldn't even notice a hill like that on my walks.
                          There is a day in your future when you will realize that you feel 'good'. A few weeks later there will be a day when you will actually feel 'great'. It will happen.
                          As far as sleep goes, you are way ahead of me with the ability to sleep on something other then your back. Once I got back to side and stomach sleeping, my sleep got better. However, it still took awhile to where I could sleep normally and refreshingly.
                          I guess that not many have ever accussed you of being normal, but your recovery sounds normal to me.
                          Fx

                          Comment


                          • #14
                            Re: A Few Questions for the Myectomy Veterans

                            DEAR SUPERMAN!

                            You are doing so so Super, but it's only 3 weeks! At 3 weeks, I had just given up my am nap & was only taking an afternoon nap (on good days) I walked, but NOT up & down hills, stairs etc. I was told @Mayo "up the stair ONCE a day. You are expecting to do tooooooo much & will set yourself back - if you don't slow down! Lest you think I'm some old sedentary lady - I'm not! I'm someone who was very active & plans to be again. I'm currently in Cardia Rehab (after my By Pass) & they keep stressing 'GO SLOWLY". We are NOT living "No pain, no Gain" (my old motto) that's just not long term healthy. I didn't agree at first, but now I'm making more progress than I ever believed possible.
                            Jim, you gotta slow down. As far as pain meds, I took meds at night till the 6 week point. Can you call your local Cardio & have him call in a script for you? Doesn't your Cardio want to see you & monitor your progress, at home? I saw my Dr, after I was home less than a week.
                            Please let us know you've moderated your activities & feel GREAT!

                            BE WELL
                            RONNIE

                            Comment


                            • #15
                              Re: A Few Questions for the Myectomy Veterans

                              As far as meds go how about try some tylenol pm i have used it with a doctors ok, well i also have degenerative arthritis in my lower spine and it helps me sleep

                              Shirley
                              Diagnosed 2003
                              Myectomy 2-23-2004
                              Husband: Ken
                              Son: John diagnosed 2004
                              Daughter: Janet (free of HCM)

                              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                              Comment

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