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Mark's myectomy date at CCF is January 11th....

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  • #61
    You can officially color me crestfallen...I had another echo this morning and I just spoke with the cardiologist who reviewed it afterwards. Merely 24 hours after having the pericardial fluid drained, a significant amount is still there.

    What is unknown at this time is whether the majority of today's fluid was re-accumulating or was left over from yesterday's procedure. They are going to try me on two more types of medicines to see how my body responds. Dr. Rodriguez will again be consulting on the matter.

    If these new medicines do not stem the growth of this fluid, then I may be looking at another surgery. I am unfamiliar with the details at this time, but it involves reattaching the pleural sac to another membrane to assist in drainage?

    Anyhow, it looks like I'm not going anywhere for the immediate future. I hope to talk to you all very soon!

    Mark
    Lexington, KY
    Age: 38
    Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
    HOCM diagnosis: January 2004
    CCF Myectomy Club: January 16, 2006

    Comment

    • #62
      Oh, man, what a HUGE disappointment.
      I'm so sorry Mark........
      We're praying and sharing in your frustration!
      Laura
      Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

      Comment

      • #63
        Hey - one bump per person!

        Serioulsy - I am sorry you are having these difficulties ... but this too shall pass. Hang in there - we are here for you if you need to vent - laugh or scream

        Big Hugs (cyber hugs do not hurt)

        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)

        Comment

        • #64
          Mark, I'm really sorry. I guess we just missed you, but we'll try to check on you later on today, but they just told me they're doing my ICD later on today, so... Regardless, Andrew and I are saying prayers for you.
          Take a deep breath; ask for something to help relax if you need to; you've had quite a road. Trust that God is there with you. See you soon.
          Theresa
          Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

          Comment

          • #65
            Ah crap

            I am so sorry you have to deal with this.
            Continued prayers going out. Please let us know how things are going when you can. We are here for you as best we can.

            Many hugs,

            Eve
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment

            • #66
              Mark,
              So sorry to here of all this stuff going on. I had my bout with issues after I came home; I guess we all walk our own path on this journey, just know you are not alone and you have many, many people praying for you.
              God Bless,
              Catherine

              Comment

              • #67
                Thanks for the support folks...I know that if I am not careful things can get out of hand with this fluid situation. I really don't have the energy required to hold a proper "pity party" for myself, so I guess that I"ll just stay the course for now.

                What is most disconcerting are the puzzling looks that I am starting to get from the docs here. They neither know why it is staying around nor what will make it go away. Yesterday, they took 650cc off me heart--yet today, they found another 200-300cc more (estimated by Rodriguez). His thoughts were that AT MOST 50-75cc might have stayed behind the back of my heart during yesterday's procedure. That means that 150-250cc re-accumulated within 24 hours.

                Tonight they started me on an IV steroid hoping to slow the irritation down inside the chest cavity. I am really praying that the meds start to take effect on me because Dr. Smedira is supposedly leaving town this weekend. Let's just say that if another surgery is the answer...that guy is worth the wait. After getting to know the guy pretty well, I now know why he gets his rock star status around these parts. I am WAY impressed with that cat.

                Talk to you soon-

                Mark
                Lexington, KY
                Age: 38
                Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                HOCM diagnosis: January 2004
                CCF Myectomy Club: January 16, 2006

                Comment

                • #68
                  Mark, God is strengthening you, where would we be without Him?

                  I'm glad that you and Theresa have each other to talk, share and commiserate. It probably helps (a little) to take on thoughts/prayers of another to have something else to think about.

                  I'm praying specifically tonight for ALL fluid to be gone tomorrow!!!

                  Blessings, Laura
                  Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

                  Comment

                  • #69
                    Mark: I am so sorry for your complications. I am thinking of you and pray that things change very very quickly. Hang in there. Janet
                    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                    Comment

                    • #70
                      Mark - Hoping things straighten out quickly. Linda

                      Comment

                      • #71
                        Mark,

                        Sending positive thoughts and hoping the bumps smooth out for you.

                        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

                        • #72
                          Mark,

                          Sorry to hear all you're going through.
                          I have to agree with Laura, it is nice Theresa & you are able to support each other and pray together. But your in great hand at CCF and I hope that today brings good news for both you and Theresa.

                          No "pity party" here, just support and prayers.

                          Stuart
                          Cleveland Myectomy Club
                          August 31, 2004

                          Comment

                          • #73
                            Hi Mark,

                            I hope the IV medication works. I am praying for you.

                            I know the feeling about Dr. Smedira. He was my surgeon and he is definitely worth the wait.
                            I think Dr. Smedira should be knighted by the Queen.

                            Mark, you continue to be in my thoughts and prayers.

                            Hugs to you and Gena,

                            Eve
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment

                            • #74
                              Mark,

                              I am praying that by tomorrow the fluid will be gone and that you will start a steady road to recovery.

                              Rhoda

                              Comment

                              • #75
                                Mark, just wanted to let you know you have my thoughts and prayers as well! Hope this straightens up soon!!!
                                Dolly~
                                mom to Andrew(HCM) 21 years old
                                Diagnosed \'95 age 5
                                Myectomy \'96 age 6
                                ICD implant \'99 age 9
                                First ICD shock (X2) \'04
                                ICD replacement surgery \'05 age 15

                                *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

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