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Thank You!


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  • Thank You!

    Hi All,

    Well, it is now Day 7 post-myectomy and I wanted to stop by, fill you in on how things are going, and say thank you for all the great help and support before and after the surgery! I apologize in advance if i get a bit long-winded here. You should know me by now

    I know for a fact that I would not be having such a smooth recovery had it not been for you folks, and I do mean that literally! Were it not for this board, I would not have been out of my bed like a shot and down the hall every chance I could get to check the computer. LoL. I attribute a large part of my recovery to the fact that my room was on one end of the ward, and the public internet terminal was on the other. Talk about dangling a carrot in front of me! I got my walking in, and then some.

    I was in ICU for a good twenty-four hours following the surgery, but only because there were no rooms available in the step-down unit. A large chunk of that time was spent parked in a corner of the ICU to make room for more needy folks. Once I finally did get to my floor the following day, the nurses would not let me out of bed right away to use the computer (probably because I was having continuing fluid issues), and I got in a whole heap of trouble when they caught me trying to sneak out to do it behind their backs. (Mental note to self: Do NOT cross the nurses in a cardiac unit.) Yikes! They were talking about having to strap me down, and the scary part is that I donít think they were joking

    I didnít really experience the Day 3 turn-the-corner thing. For the most part, the first twenty-four hours were the worst, and it has simply gotten better from there. Pain has not been a huge issue. I refused morphine as soon as I was able to, and the percocets have done the trick just fine since Day 2. I havenít needed any painkillers at all since the trip home from Cleveland yesterday (Day 6) which I think is a good sign. The trip was not bad at all, and we even stopped for ice cream at the Dairy Queen, did a little shopping, and had a nice dinner along the way. Nobody could believe that I just had open-heart surgery six days prior. I was very very tired by the time I finally got home, but other than that, no complaints.

    Donít get me wrongÖ I am NOT some brave person when it comes to pain. Iím a typical guy, and as big a baby as they come. But in all honesty, it just doesnít hurt that bad, and not nearly as much as when I had my kidney yanked out in 2000. Perhaps I was simply prepared for much worse. The extracted tooth hurts much worse tonight than anything directly related to the surgery.

    I was a bit shocked when they took me to get a stress echo on Day 3. I was so alarmed at the mere thought of it, that Dr. Lever himself came in to administer the amyl nitrate and try and calm me down a little. I just couldnít believe that anyone would put a newly repaired heart through that. Iíll tell ya, I watched that screen with sweat pouring off my face, seeing my heartrate go up and up and waiting for the big POP. LoL. I havenít gotten the results yet, so I canít tell you what my new gradient is, except that the tech said it looked good.

    Iím glad to be back home in my apartment at school. I definitely do NOT like to be pampered, and will ultimately do much better if left alone to my own recovery. I like that I am forced to care for myself, and believe that this can only expedite things. My cardiologist and the hospital are within walking distance, and the grocery store is only 1.2 miles roundtrip by foot. I have already been there today to do light shopping and fill my prescriptions. Iím going to try to make the trip every day (to keep my backpack under the required ten pounds), and Iíll get my daily exercise at the same time.

    Itís still way too early to tell whether the myectomy will ultimately be successful or not, so I will not comment on that. Immediately after the surgery, I went right back into tachycardia so Iím back on the atenolol. Iíll need to take that for the long haul. Iím continuing to have fluid problems, and in fact Iím already back to my pre-surgical weight, so weíll be putting me back on the diuretics tomorrow for sure. But itís only Day 7, and I have high hopes that after all the surgery-related stuff is out of the way, Iíll be feeling much better than I did before. I have not had any bouts of A-Fib yet, and although it is still very much a possibility, I have been told that since i made it through the first week already, it is a very good sign that I may not have to deal with A-Fib at all

    Thanks again! Iím feeling great, and glad to be home.


    (edited for spelling)
    "Some days you're the dog... some days you're the hydrant."

  • #2
    Re: Thank You!

    Hi Jim,
    You can be as long winded as you like...you have earned it! Congratulations on your surgery, your recovery and your enthusiasm. It's wonderful to hear from you and know you are in great hands at the Cleveland Clinic, Dr. Lever, and all the great staff helping you through this giant step!

    Thanks to all our board members that have been cheering you on and helping ease you through this bumpy road at times!

    Can't wait to hear from you soon!
    Best Wishes for a speedy recovery and more warm wishes from AZ to the east coast!


    • #3
      Re: Thank You!

      Jim. You inspire me! With your attitude you couldn't help but keep improving.


      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4
        Re: Thank You!

        Jim, It's really good to here from you, sounds like everything is going in the right direction, keep up the good recovery.
        Good Luck and Stay Well.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.


        • #5
          Re: Thank You!

          Wow, Jim!!! That is wonderfully incredible! Thanks so much for sharing your experience with us so positively.

          We will all be eager to keep up with your updates.



          • #6
            Re: Thank You!


            You have done so well so far and I am thrilled for you!! It has not always been an easy road for you, but I see some light at the end of this tunnel!

            Be well - take care of yourself and stay in touch!

            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)


            • #7
              Re: Thank You!

              Jim...You sound great. I wish my recovery was going as well as yours. I will get by as soon as the rash I have is gone. Keep up the good work on your recovery. I still say Cleveland Clinic is the best.

              Going to see the Reds play a ballgame tonight. That's a plus for me.

              Take care...

              Patrick Ekardt
              " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


              • #8
                Re: Thank You!


                I wanted to drop you a few words of wisdom , even though you feel like it don't over do it get your exercise but when you feel tired stop and rest, i pushed mself a few times and payed for it dearly he next day, not even wanting to get out of bed or rather the recliner, i did very good in the hospital they said i scared them a few times the way i would just jump up out of bed but most cardiac nurses are use to taking care of people alot older than we are, and they were amazed how fast i got up and around, i was walking the entire floor before i went home 4 or 5 times a day, i 'm keeping my fingers crossed for you for a better way of life than i've had from the surgery, which you will you had no breathing problems like i did and still do if i don't wear my oxygen at night i can't hardly move in the morning when i wake up, i know it doesn't make sence but , i 've tried a couple of times and it's the same thing, but this doctor i seen for my lungs said he thinks it's mainly my CHF so he reccommended me see a heart failure specialist, he say s if i hear anything in your lungs it is a tiny bit of Emphazema in my lower left lung but not enough to cause this oxygen problem, and no more walking because i swell so bad and that is another reason he say it's CHF so i guess to satisfy all concerned i will see a CHF specialist, but you take care of yourself you got it, and make sure you don't dehydrate yourself

                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


                • #9
                  Re: Thank You!

                  Jim . so happy to hear how great you have done . There are some of us who certainly wish we did as well. I can't believe you went to the market. Just be carefull , please, you do not need any set backs. You are amazing and such a marathoner. All you have gone through has prepared you well for this journey. Keep on doing well and you are in my thoughts. 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


                  • #10
                    Re: Thank You!

                    Hi Jim, I am amazed at how quickly you have come back from surgery. I also echo the sentiments of others to not overdo. You might feel good today, but be paitient and make sure you are capable or sustaining this level of activity. I agree that living alone pretty much forces you to do things you might otherwise not do if you have live in support. You are doing wonderfully and I wish you continued progress in your recovery. I, like you, hope your fluid issue will subside and you will be in fighting trim ready to take on the world again. Take care, Steve


                    • #11
                      Re: Thank You!

                      I'm glad you're so mobile! Take it easy and keep up the good work.


                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.


                      • #12
                        Re: Thank You!

                        Thanks guys,

                        You folks are very cool to be so supportive... but i wouldn't be so quick to pat me on the back for being such a 'trouper'. You weren't around to see the little tantrum i through in the ICU when i found out they had to leave the breathing tubes in for a lot longer than originally planned, or the certain little hand gesture i gave to the ICU nurse when she told me to 'just lay back down and keep quiet'. LoL.

                        I've also neglected to tell you about the heart cath from ****, which had some painful complications both during and after the procedure, and landed me in the ER five days later at 1:30am on the morning of my myectomy, just 3.5 hours before i was supposed to report for surgery. Talk about tired and cranky! I was ready to walk away from the whole darned thing that morning

                        But these are all things that just plain happen, and i'm pretty sure i'm not the first patient with tubes down his throat to flip off an ICU nurse. (I did apologize profusely once the tubes were out, and we all had a good laugh about it. She became one of my 'buddies' later on during my stay.)

                        Pat and Pam: Recovery times are so variable, and there could certainly be some rough waters ahead for me. For all i know there's a nice big clot headed to my lungs or brain even as we speak, i could go into A-Fib at any moment, or the fluid issues could get much worse. I'm just trying to be as positive as i can be for right now

                        Shirley: Now that you've expressed your desire to see the folks at the Cleveland Clinic, i'd like to do anything i can to help you get there, even if it means coming down there and picking you up myself and taking you to Cleveland. It could be a whole Thelma and Louise thing! Except, if you don't mind, perhaps we could avoid the whole 'driving over the cliff thing' at the end?

                        Take care all,

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


                        • #13
                          Re: Thank You!

                          Glad to hear all went well, your such an inspiration!! Take care of yourself, we missed you!!

                          It's not what you gather, but what you scatter that tells what kind of life you have lived.

                          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                          • #14
                            Re: Thank You!

                            What doesn't kill you makes you stronger. Thats what my father always tells me. Hopefully through all those bumps (and some very big bumps they were), you can now get better and move on. I have had a Dr I wanted to flip off but being so shy, I just cursed her to ****, under my breath. It wasn't quite as satisfying. Although I guess you should never piss off the people who have your life in their hands.

                            Here's hoping for all smooth roads from here on out!!

                            Take care,
                            It's not what you gather, but what you scatter that tells what kind of life you have lived.

                            Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                            • #15
                              Re: Thank You!

                              Sorry Jim,
                              I have dibs on the Heart Cath from **** Ė the end of May 2003. It ran for six hours over two days. They had to stop after three hours on day one because of my kidneys, and at the end of day two I had pneumonia, my blood pressure was 70/40, my kidneys almost failed, and they had damaged the artery putting in the stent and had to place a second stent over the damage.

                              I was released one afternoon a few days later Ė too soon Ė and was back the next morning. Three days later I was again released too soon. I went home, and the next day passed out a few times and finally took a nap on the kitchen floor because I would pass out when I tried to get up. That was Sunday. Tuesday morning I woke up with a stroke (only lasted three days), went for a fasting blood test, and then passed out again on the sidewalk of the restaurant we went to for breakfast.

                              The next day I went to my PCP appointment. He took one look, put me on oxygen and called the paramedics to take me to a different hospital. I was there for three days where they ran a bunch of tests, also confirming that I had a stroke. After that I was transferred on a gurney in a truck with no shocks, to an after-care facility. After two days there I was finally released Ė but by then this whole mess had lasted two weeks.

                              Interesting side issue. When I got out of the lab on day two I was taken directly to my room Ė no stop in recovery. When I got there nurse Crotchet was there to Ďhelpí. As she was administering to me I wanted to scratch my nose which itched. She immediately grabbed my wrist and held my hand away. I couldnít talk because the pneumonia had my mouth and throat so dry everything was stuck together, and swallowing was about equal to getting stuck with a sward. Well, the incisions were in my femoral arteries (both sides), so I could see no reason to keep me from scratching my nose. The second time I tried it the nurse not only stopped me, she put both my arms and legs in restraints. Well, Iím both deceptively strong, and know how those things work, so when she finally left, I tore my arm loose, gave my nose a nice long scratch, reset the restraint, and took a nap. When I woke up the shift had changed and the new nurse couldnít figure out why I was ever put in restraints.

                              They had used coated stents for the heart cath, and when I saw my cardio a few days later he had a fit because I wasnít given a prescription for a drug (Plavix) to protect me from getting a massive blood clot / coronary. That was just before the stroke. Ah well . . .

                              By the way, that December when I was not yet diagnosed, but was having an HOCM attack, they did another angiogram on me. Thatís the same thing minus the balloon and the stents. (Donít forget I was also angioplastied in July for my renal arteries and again in August for my iliac arteries.) I guess they just like to abuse my kidneys.

                              Any other challenges to my claiming the Heart Cath from **** trophy? Honesty, I really donít want it, - but I wouldnít wish it on anybody either.