If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

4 days in Cleveland and still counting

Collapse

About the Author

Collapse

DianeE Diagnosed 2000, Myectomy at CCF May 2012, Local COE= University of Kansas Hospital Married 2 adult sons, screened & clear Find out more about DianeE
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 4 days in Cleveland and still counting

    This will be short as I am pretty weak right now and need to save my energy for the important thing like blowing in your meter and walking ten feet to the bathroom! It crazy how completely helpless you feel. However I can say with certainty that I came to a great place. The doctors, nurses, assistants etc have been amazing. The hospital room feels more like a hotel than any hospital I have been in before.

    They tell me I got through the surgery very well. 3.5 hours and into an accelerated ICU room. Perhaps all the good news from Dr. Smedira made me think I was going to be a poster child for quick recovery. It's been rough, I won't lie to you. I am getting a blood transfusion tonight. They don't like what they are seeing on my CBC panels. Anyway, I hope that will help. I kept thing getting 3 chest tubes out today would do the trick, but the shortness of breath is worse than ever. Hopefully tomorrow will be another day. Going to sign off now as I cannot even keep my head up. Nap time again. Thanks for your good wishes and thoughts. It has been so helpful.

    Diane
    CCF myectomy
    May 10, 2012

  • #2
    Re: 4 days in Cleveland and still counting

    Hi Diane,
    Glad you've come out the other end. Yes, to me too the really surprising thing about my myectomy was the weakness. Hang in there, keep blowing in the thingy, and keep walking -- you'll be out soon!

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: 4 days in Cleveland and still counting

      Hang in there, Diane! We're all thinking of you and hoping that you have a speedy recovery from here. Day 3 out from myectomy seems like it's the worst for everybody (it certainly was mine) and you're almost through it! Please keep us posted on your progress.
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #4
        Re: 4 days in Cleveland and still counting

        I agree - you're in the toughest stretch, and it will start to get better soon! Absolute best luck, take it easy on yourself, and rest, rest, rest. Oh, and walk. You know the drill. Good luck.

        Comment


        • #5
          Re: 4 days in Cleveland and still counting

          You will probably feel better after the transfusion. I felt worse from the anemia than anything I think. I was just about to the point of needing a transfusion, but they didn't give me one in the end and I was able to recover by myself. I only ate food with iron in it for a few months.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

          Comment


          • #6
            Re: 4 days in Cleveland and still counting

            Congratulations on making it through, Diane! Get your rest, keep using the puffy toy, and I hope you're feeling better soon. Hang in there!

            P.S. I think my favorite doc there was Dr. Collette, the recovery specialist. I hope she's there with you--she's great.
            Diagnosed (w/obstruction) 2003 at 39
            Alcohol Septal Ablation Feb. 2006
            Myectomy April 2007 Cleveland
            Pacemaker dependent (no ICD)
            Thankful and doing fine

            Comment


            • #7
              Re: 4 days in Cleveland and still counting

              Congrats. Keep up the good work on the blowy thing and walking. Each day you'll get a little stronger - like learning to walk again. Have to say that was a speady surgery. Mine was over twice that long. Keep up the faith and get your rest. Best wishes.

              Toodle pip... Moosedreams
              Diagnosed HCM Nov 2009
              100 mg Atenolol; Baby asprin
              First Trip to CCF June 2010
              HCM Specialist at CCF... Dr. Harry Lever
              Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
              AICD w/pacer at CCF... December 20th 2010

              Once you choose hope, anything's possible. ~ Christopher Reeve

              Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

              www.TheRhubarbChronicles.com

              Comment


              • #8
                Re: 4 days in Cleveland and still counting

                Originally posted by Moosedreams View Post
                Congrats. Keep up the good work on the blowy thing and walking. Each day you'll get a little stronger - like learning to walk again. Have to say that was a speady surgery. Mine was over twice that long. Keep up the faith and get your rest. Best wishes.

                Toodle pip... Moosedreams
                Today was a pretty miserable day I struggled all day trying to catch my breath. Panting is good term to describe it. After a steady parade of nurses, technicians, aides and doctors it was determined I neededed fluid drained out of my right lung cavity. Although I am still a little SOB it was a big improvement. Maybe tomorrow I will out walking as they have yet to encourage this because I could not catch my Breath and my heart rate would jump so dramatically every time I would just stand up.

                Again, this is a fantastic place and have nothing but wonderful care here. For those facing this surgery it is no walk in the park, but if you choose to have it at Cleveland you will be in nothing but excellent care. Will keep you posted as hopefully tomorrow will be the day I start to see a real improvement and actually be able to the benefits from the surgery.

                Comment


                • #9
                  Re: 4 days in Cleveland and still counting

                  Hi Diane,
                  No fun. I had a lung problem too; once they drained it I was *much* better. Hope you feel better soon!

                  Gordon
                  Myectomy on Feb. 5, 2007.

                  Comment


                  • #10
                    Re: 4 days in Cleveland and still counting

                    Diane,

                    I'm hoping your current issues subside quickly and that you have nothing but smooth sailing from here on in. You are correct that it is no walk in the park, but you're in one of the best places possible to be receiving the care you need. As Gordon said he went through the same thing, and look how well he is doing. Try to focus on the positive and please continue to keep us updated on your progress.

                    P.S. I had my myectomy at Cleveland Clinic before they built the new heart center and I understand that it is just fantastic! I'm sorta envious in a wierd kinda way.

                    Is it as nice as everyone says it is?

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

                    Comment


                    • #11
                      Re: 4 days in Cleveland and still counting

                      Hi Diane,

                      I'm very happy and proud you made it through. Even though it doesn't seem like it was worth it yet, it will come. I'm on week 8 and started walking/jogging which I never thought I'd ever get to do again. Nothing but blue skies ahead!

                      Take Care,
                      Mike

                      Comment


                      • #12
                        Re: 4 days in Cleveland and still counting

                        Hi everyone. I am sorry I haven't weighed in for a little while. To be honest I simply didn't have the energy to compose my thoughts enough to write anythng coherent. I am happy to say that slowly but surely my energy seems to be coming back. I am starting cardiac rehab next week and looking forward to it. I need someone to guide me through what is "doing too much" and what is not doing enough. I don't seem to be able to judge that for myself until after I have overdone it enough to suffer for it. I have been told by so many that everyone heals at their own pace and not to compare myself to others. I have to admit it was hard to not get frustrated while I was in CCF watching patients that were 20 years older than me walk the hallways with relative ease while I needed help getting myself to the restroom. I think my expectations were that due to my overall good health I would be the poster child for myectomy recovery.Boy was I wrong. As it turned out I needed a blood transfusion and also need my lungs tapped of the liquid that was building up in them. However once I finally got home my recovery has sped up and I look forward to each day.

                        I want to thank everyone here that kept track of my while I was in the hospital. The notes and emails were very encouraging and meant a lot. My husband was very impressed with our little community here. In fact, I heard him telling other HCM patients on my floor to make sure they checked out the website too!

                        I do have a question for all of you who have had a myectomy. When did you start realizing the benefits of the surgery? I know some have said "right away" but that is not the case for me. I am assuming that I will need to completely heal from surgery first. For example I still get winded walking up any kind of incline and overall fatigue is still a problem. I am hoping that will slowly improve as my stamina slowly improves.

                        Diane
                        Myectomy at CCF
                        May 2012

                        Comment


                        • #13
                          Re: 4 days in Cleveland and still counting

                          Hi Diane,
                          I don't think I was sure I was doing a lot better until about 5 or 6 weeks after leaving the hospital. Part of that was due to some complications I had (that were finally all handled by that point), and part of it was . . . well, people respond differently.


                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #14
                            Re: 4 days in Cleveland and still counting

                            Its not instantaneous, and due to the fact your recovering form Open Heart Surgery, its a bit hard to find that baseline you knew before. Once your able to walk more - say 2-4 blocks, it occurs to you that your feeling better. For some its a couple of weeks - for others a solid month- month & a half.
                            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: 4 days in Cleveland and still counting

                              Diane - glad you are home and improving. It's good to hear other people's experiences, but remember that each person is different - you will recover at your own rate. You had complications with the lungs that need time to clear also - glad you are doing the cardiac rehab - much support there -it will be good to connect with other people with similar experiences, but remember again, their situation is different so be sure to set goals for you, work towards them. Others in the program may have had heart surgery, but the underlying problem will not be the same as yours.

                              Best wishes - Linda

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X