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At the Cleveland Clinic Big Day tomorrow

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Colorado213 Wife to husband diagnosed with "a severe case of HOCM" according to Dr. Salcedo at University Colorado Med Hospital HCM Center March to June 2014 I'm the main researcher and planner, so here I am! Mother to 3 young boys who will be tested in the coming months as soon as we get daddy situated. Find out more about Colorado213
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  • At the Cleveland Clinic Big Day tomorrow

    Hi fellow HCMA supporters. We are currently at the Cleveland Clinic, finishing up the testing and doctor meetings in preparation for Justin's myectomy tomorrow.

    Other than lots of shuffling around from place to place and waiting everything has been very smooth. The people and staff are all very knowledgable and friendly. Currently we are waiting to speak with the surgeon, Dr. Smedira. (Just met with Dr. Smedira, another friendly and quick meeting.)

    Overall, justin is deemed a Classic case of HOCM and a prime candidate for this type of surgery according to Dr. Lever. He was very matter of fact and really didn't discuss numbers or terms as we seemed to be well researched already (thanks to Lisa and this forum!).

    Please keep Justin in your prayers. Pray his mitral valve doesn't need replacing. And pray I can be the strength he needs to recover happy and healthy.

    We are positivity excited to this new opportunity at health. Thank friends!


    Sent from my iPhone using Tapatalk
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

  • #2
    Re: At the Cleveland Clinic Big Day tomorrow

    Hi Megan and Justin!!
    I so know exactly where you are right now. Dr Lever was the same with us; he said something like : Pfff, yeah, this will be an easy job for Dr Smedira...". Then he went on to chew out my wife for wearing such thin shoes to go out to dinner that night in the harsh Cleveland winter. Pretty funny, actually.

    I was so psyched the next morning for surgery that I was high-fiving folks in the hallway as I was wheeled down to the O/R. There were a bunch of us patients at the 7:00 am shift and we were lined up outside of the respective O/R's like planes waiting to land at Chicago O'Hare. When in the O/R, I was joking with the docs and anesthesia staff, then felt big punch in my arm. It was Dr Smedira with a big grin on his face that I could see through the mask. "You ready to fix this, buddy?", he said, or something like that. Then he called all the staff around for a quarterback- style huddle and and explained my case. There were a lot of flashlights strapped to foreheads bobbing up and down in acknowledgement. Then the next thing I remembered was "Wake up honey...." (6 hours later, apparently - I could not tell)

    Justin will do fine and you guys BOTH are in good hands. The CICU is awesome and you will quickly be brought onboard the team of care-givers for Justin. You will have to take all the notes because Justine will be stoned out of his mind for a few weeks. That's why they will take just as good care of YOU.

    Prayers are beaming from here but you guys will do great, I'm sure.
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

    Comment


    • #3
      Re: At the Cleveland Clinic Big Day tomorrow

      All my best. Will keep looking for your updates.
      First symptom of SOB and angina in October of 1997.
      Diagnosed with HCM in December of 1997.
      Been on Metoprolol almost always since then.
      SCA on October 10, 2012.
      Was in ICU for 9 days at St. David's Hospital in downtown Austin.
      Underwent ICD implantation on October 17, 2012 by Dr. Shane Bailey.
      Underwent Septal Myectomy and Mitral Valve repair on December 11, 2014 by Dr. Smedira
      Underwent ICD/Pacemaker upgrade on December 16, 2014 by Dr. Mayuga.

      Comment


      • #4
        Re: At the Cleveland Clinic Big Day tomorrow

        Love and Light from The Mile High City......To both of you, you are in God's hands and His handpicked surgical team.....You will do very well.
        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: At the Cleveland Clinic Big Day tomorrow

          Glad he's going to get the care that he needs. Sending healing vibes his way and stress-free vibes to you.
          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


          • #6
            Re: At the Cleveland Clinic Big Day tomorrow

            He's in great hands.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: At the Cleveland Clinic Big Day tomorrow

              Megan and Justin,

              I will pray for both of you and wish Justin a very speedy recovery!

              Comment


              • #8
                Re: At the Cleveland Clinic Big Day tomorrow

                Will keep you in prayer! They are great professionals there!


                Sent from my iPad using Tapatalk
                Joel

                Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                June 2014 DX HOCM at Johns Hopkins
                October 2014 Myectomy and Cryomaze at Mayo Clinic

                Comment


                • #9
                  Re: At the Cleveland Clinic Big Day tomorrow

                  Almost done. Just waiting to hear from the doc to get an update on how the surgery went. And then about two more hours until I get to see Justin in the ICU. I'm so nervous but excited to see him too. Thank you for the kind words and experiences. It really is uplifting!
                  Megan, wife to Husband, Justin with HOCM
                  Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
                  Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
                  AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
                  Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
                  Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

                  Comment


                  • #10
                    Re: At the Cleveland Clinic Big Day tomorrow

                    Prayers for a speedy recovery!

                    Comment


                    • #11
                      Re: At the Cleveland Clinic Big Day tomorrow

                      Been thinking about you guys today. Justin has the easy part sleeping through it while you wait pensively. Bless you for being there. It'll be fine.
                      Last edited by angusjcampbell; 10-10-2014, 07:18 PM.
                      Angus Campbell
                      Golden Isles Region, Southeast Georgia, USA

                      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                      Myectomy Jan 9th 2014 at Cleveland Clinic
                      Drs Lever and Smedira

                      Comment


                      • #12
                        Re: At the Cleveland Clinic Big Day tomorrow

                        Now you get to watch the miracle of recovery - Its amazing to see how fast the body improves. Thanks for the update!
                        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


                        • #13
                          Re: At the Cleveland Clinic Big Day tomorrow

                          As you may have read in the COE section, my husband Justin and I flew from Denver to Cleveland Clinic for his Myectomy.

                          Yesterday he went back to OR prep around 10am and I met with Dr. Smedira at 3 pm. He told me it would still be another hour to two hours until they got him set enough for me to see but let me know the procedure went well and as planned. Justin's mitral valve looked good and didn't need replacing. Great news as I was worried about it having to be replaced. He also said he removed 20 grams of heart muscle. I asked if this was a lot, and he smiled and said, "well, the average patient usually only needs 7 to 8 grams removed. So yes, it is a lot." When I asked if he took a picture he was surprised, but said no. That he used to but people didn't like seeing a chunk of meat. I told him justin would have loved to see but we understand. We kinda smiled and laughed. It was a pretty short visit and he was off.

                          I did have my best friend with me, which I was very grateful as it was a LONG day , that just got longer. It was nice to have her support. Around 5 pm we were called back to see him. He was still under sedation as his chest drain was still draining significant blood. It was quite concerning I could tell. After the 4 th bag of platelets and plasma to try to clot, Dr. Smedira called him back to the OR to look for the source of bleeding. It was another three hours until we got to see him again. After holding it together all day, and even in the face of more OR time I held it together, until the nurse asked if I was okay. Well, after that I lost my composure as the place swarmed with a dozen or so personnel to whisk him off to the OR. It was disconcerting to say the least.

                          I will say though we have met with some out-of-this-world love from complete strangers who upon seeing my return and condition began to pray right there on the spot. It was very humbling to say the least. And strange as this was it was not the first or only out-of-this-world spiritual experience while here in Cleveland. Justin, my friend, and I were wrapped in love at every turn. It is still hard to fathom. And I would be remiss if I did not mention it as it was a common theme throughout our entire visit. Very humbling.

                          In the end, the docs located the bleed at the wires used to stitch the sternum back together. After a fix and wash the bleeding was resolved and Justin returned to the ICU. This time I was called back immediately to relive my fears. Once settled he was kept sedated throughout the rest of the night on the vent. My friend and I caught a few hours of sleep and a shower and returned at 6am in time to see him come off the sedation and begin the rise to wakefulness. He says his first memory is of us waking him. He also remembers freaking out when his Meds wore off enough that the vent tube began to choke him. That wasn't fun but he got that removed within an hour, and from the. On each hour got better. He could talk and let us know his needs.

                          So currently he is day one in Cardic ICU, resting and with his own pain med pump. He said that each hour he feels better and better, which is crazy when I saw what he was facing just 24 hours ago! He sat in a chair for 2 hours (nodding on and off) and his heart tolerated it well so far. The nurse says he should step down to a room tonight if he continues this path.

                          Now I am hoping Smedira makes it around before we step down as I know Justin's eager to hear more about his surgery and heart firsthand. And I have questions on recovery of his heart after having such a HUGE Chunk of heart gone. That's a big hole!

                          Sorry so long, but I wanted to share, even if gritty, because I know how much these posts helped me before we came.
                          Megan, wife to Husband, Justin with HOCM
                          Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
                          Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
                          AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
                          Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
                          Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

                          Comment


                          • #14
                            Re: At the Cleveland Clinic Big Day tomorrow

                            Thank you for the update - Please know his cyber HCMA family was with you all during those trying hours. Glad he's on the mend. Yeah the Vent tube is an issue, but I always advise folks to just relax and breathe deeply - the faster the O2 comes us, the faster the tube is removed. They keep you in a perfect form of sedation at this point so its really not a problem if your prepared and don't fight it. Next is step down and getting him sitting upright. Then its a walk to the door and back (sometimes the first day!) each day its more often and further. As he improves they slowly remove the various items attached to him. Catheter, drains, Picc line, AED lines. Within days - it'll seem like he was never sick to begin with! BUT a reminder, He'll tend to feel so good at home he may over do it (really!) so rest is just as important as the walks and the Expirometer exercises (the blow thingy). Its really great you have support with you. Get some rest!
                            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


                            • #15
                              Re: At the Cleveland Clinic Big Day tomorrow

                              Love and Light to you and Justin. Sorry he had to go back to the OR but the fact that the bleeding did not involve the heart itself, but something more superficial is a real grace. Having 20 grams of tissue removed is A LOT..... However, it does not leave a hole or even a divot......it leaves the heart in the shape it would have been without this genetic thickening.Just imagine a 20 pound boulder blocking blood flow through his heart for years......and they removed the boulder!! Justin is going to feel sooo much better.... The recovery from the surgery will be a speck on the horizon with his new state of health.
                              Just an FYI.....his anemia from blood loss and the altitude here in Denver may slow him down a bit but it is only temporary. Stay Well get some rest so you have the energy for a victory dance with Justin. Thanks for taking the time to update us.
                              Last edited by JillC; 10-10-2014, 06:49 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

                              Comment

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