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What a start to the new year.


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • What a start to the new year.

    What a trying few weeks this has been . There are just times I feel I can't win for losing!

    I just spent 16 long days in the hospital and feel spent. My body just decided to shut down on me. Earlier in December I had a bout of Crohn's disease and spent a couple of nights in the hospital and thought I was set. Disney decided on a few 12 hour days for me and my heart didn't like it.

    Fortunately, I did not spend Christmas in the hospital like last year! On the 27th I was having a lot of SOB and you could hear my breathing a mile a way. So I was whisked away to the ER. CHF no big deal a little lasix and I'm over it right? Wrong, my body went nuts I got severe abdominal pain, neasea, vomitting. I told the Docs. about the Crohn's and they did all the test but really didn't see anything. So I spent five days that I really don't remember in so much pain that they just kept me drugged. Finally, my GI said they needed to do laproscopic surgery and see what was going on. I was a bit nervous about it but they called all of my docs and they said it was fine. Unfrotunately, the surgeon didn't want to touch me so that took a couple of days of convincing.

    He finally did the surgery on Wednesday and they found a huge hernia he said it was the largest one he had ever seen in someone my age. Just gotta be different I guess! He said that my intestines were getting caught and that was causing the pain. He also said I had some lesions that had to be removed. It helped my symptoms out a great deal! While I was recovering though they try to get you up as soon as possible and as everyone knows I'm the overachiever so I though I would do more and I paid for that one too. I ended up getting chest pain and SOB again and the enzymes skyrocketed and got to stay a few more days for more testing.

    Well, I got released last night and am still in pain and of course school starts today. Wish me luck. I hope this year starts off a little bit better now!

    Mary S.

  • #2
    Re: What a start to the new year.

    I'll be praying for you Mary!
    My prayers are for a speedy recovery and a New Year starting today. We are renewed in the faith that God's plan for you is great and you will be well in His love and guidence. My hope is your pain will subside and you will be renewed! Gods speed to you dear one. School is meant for learning, loving and living. Enjoy! May this be your guide for the New Year.

    Love and Light,


    • #3
      Re: What a start to the new year.


      You have really been through it this past year, I hope you are feeling better soon, and good going with going back to school, i hope things go better for you in the new year

      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


      • #4
        Re: What a start to the new year.

        Mary, I'll be thinking about you and saying a few special prayers too. Best wishes, Linda

        PS - Christine loved the kimono, thanks again for helping me get the perfect one


        • #5
          Re: What a start to the new year.

          Mary, I do wish you a better new year in all that you do. I am sorry that you had to spend so much time in the hospital. It is not a good place to get rest. With them wakeing you up to give you your meds and all.

          I do also hope for the right job to come your way. The schooling thing should be good with as well as you have done in the past.

          Keep your chin up and remember that you are cared for by a lot of people here. keep smiling.
          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.


          • #6
            Re: What a start to the new year.

            WOW... Well lets look at the bright side here - no joke... MAYBE this procedure will clear up some of the symptoms you have been having?!???
            Lets hope so...

            shake off the past....

            MOVE to the future...

            TAKE IT SLOW and you KNOW you will do better then attempting to RUSH.
            REMEMBER I saw it first hand kiddo!

            Be well,
            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: What a start to the new year.

              dear mary

              im so sorry about the rough time. but lisa is right on all counts --once you are recovered from the surgery, hopefully things will be better all over

              taake care



              • #8
                Re: What a start to the new year.

                What you need is some Chinese food! And then a sprint through the parking lot. Okay, maybe not...

                Hope you feel better. Remember you're recovering from surgery!



                • #9
                  Re: What a start to the new year.

                  Mary, 2003 was not great for you, hopefully your surgery will set you up for a better 2004.
                  Take it easy and get well quickly.
                  Bill, what do you guys put in your chinese food down there?
                  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.


                  • #10
                    Re: What a start to the new year.

                    I think Bill was referring to our wonderful sprint through EPCOT to get to the China pavillion for our dinner. Which was futile because I had not set my watch to daylight savings time and we were an hour early! I tell you what though HCMers are the best at holding up railings to bridges

                    Starting to feel better! yeah!

                    Just had to add something positive I made the deans list. Hey guess I am smart

                    Thanks for all of your support

                    Mary S.


                    • #11
                      Re: What a start to the new year.


                      I just can't seem to shake this. Something has to give. I wasn't even back to work four days with this episode. I was doing my last show of the night I got a severe headache and was real dizzy. I walked across the plaza and started having chest pains and was all down hill from there. Back to the hospital.

                      More tests and medicine adjustments. I had another cath done and all was clear in the major arteries and they said my smaller arteries areabnormally small then add a big heart to small arteries and there you go the perfect recipie for chest pain they said!

                      I was just hoping to make it this last week and get to my new sit down job. So much for my new year resolution.

                      By the way has anyone been put on a calcium channel blocker and a beta blocker. I am now on 120mg of verapamil and 12.5 mg of atenelol a day. I am very weary about the beta-blocker because my bp only hits around 90/60. I don't think I could handle it going any lower? Any advice?

                      Mary S.


                      • #12
                        Re: What a start to the new year.


                        hang in there --you'll be at your sit down job really soon!

                        the beta-calcium channel blocker cocktail in uncommon but not unheard of. push fluids and talk to Maron about your bp asap.

                        i'm sorry you got stuck with such a bad combo of arteries and heart!

                        take care,



                        • #13
                          Re: What a start to the new year.

                          Mary - I also have a very low bp, and used to be only able to tolerate 25 mg. of atenolol without my blood pressure getting too low. Then, when I got my ICD, my doctors enabled the pacemaker portion of the ICD so that it kicks in whenever my heartrate gets below 60. (My heartrate used to fall into the 30s.). Anyway, now I can tolerate 150 mg. of atenolol. Maybe you should ask your doctors if that would help you...demand pacing at 60 - 70 beats a minute. Something else to think about since you already have the ICD.
                          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.


                          • #14
                            Re: What a start to the new year.

                            Hi Mary,

                            I too was in the hospital seven times between the end of April and New Year - picked up six stents, and didn't get the diagnoses of HCM until Jan 1st - after over fifteen years of displaying all the symptoms except arrhythmia.

                            Currently I'm on 360mg of Verapamil and 50mg of Atenolol - among a bunch of other meds for my other conditions. I'm doing pretty good on this drug load with my diastolic pressure between 60 and 70. (I used to be hypertensive and need to keep the pressure down.)

                            So you made the dean's list. Well, bully for you. Remember an education leads to a richer life. You've got guts kiddo. Proud to know you.



                            • #15
                              Re: What a start to the new year.

                              Mary I Was on both meds prior to my myectomy in Oct. I took 300mgs of Atenolol and 180 mgs of Cardizem XT. (long acting form) . Post surgery I do not take the Cardizem but take Atenolol 100mgs a day. I started in late Dec to have chest pain again. Dr Maron agrees that it is the small vessel disease causing it. I am thinking that he may have to raise the beta again a bit or put the calcium channel blocker back on board. It is interesting , when I started the Cardizem I was told by my former MD that it was "empiric" I had to look that one up: not based in science or scientific evidence. Well I'm not sure it was that that helped or when my beta was titrated up from 150 to 300. It was somewhere during the titration that my chest pain went away. He was titrating for a different reason , my obstruction, but it worked for the chest pain . So who knows. As with the previous post I agree,setting the pacemaker helps .Mine was at 60 and is now at 50 . The low BP's can be tough. Sometimes our bodies ajust as we ajust to the med changes and sometimes not. I hope you soon feel much better you deserve a big break! Take Care, 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


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