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day by day of evaluation

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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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  • day by day of evaluation

    For those of you getting ready to go through this same process I thought I'd give a play by play account of the event.

    I found it a lot better to finally come into the hospital on my own accord! So, I packed the laptop. What a life saver it definately helps to pass the time. Now I get to talk to you guys while I'm here.

    So, this is the first day not a whole lot to report. Just the admission paperwork. Make sure you bring a book with you. It took them almost two hours to find me a room. After, I made it to the room then they have to start a line. For most this is an easy occurance today wasn't too bad though only took four tries!

    I've already been seen by four doctors but ironically no orders as of yet. One doctor has mentioned though starting me on doubutamine he called it "jet fuel" for heart failure patients.

    I'll keep everyone updated as the week progresses. And I'll be on-line when I can my AIM is Toogoofy317 feel free to drop a line

  • #2
    Well, I'm certainly impressed! A hospital with internet access for your laptop, right off the bat? Cool.

    Hey, maybe they can supercharge that IV line with some of the good antibiotics for your earache, etc. Has that been brought up?

    What tests have they got scheduled for you?

    Good luck! Hang in!

    Rob
    --Living life on the edge .. of a continent!
    Charter member: Tinman Club

    Comment


    • #3
      All I did to get the internet access was bring a dual socket phone line. It's dial-up but it is better than nothing.

      Found out what some of the junk in the chest was. Not bronchitis a bad case of CHF. They gave 40 of lasix and within about 20 minutes I had put out over 1500. So, as usual somebody got the wrong diagnosis, Funny how last night they said my x-ray was clear and I had nothing wrong.

      During the week I'm supposed to get an echo, stress, V02, right sided heart cath, colonoscopy, EGD, and a PICC line.

      Has anyone else been on Dobutamine? They are supposed to start me on that tomorrow.

      Thanks,

      Mary S.

      Comment


      • #4
        Mary - Just curious - When you were coughing, were you coughing up yellow or green mucus? I still have bronchitis after a month, and saw my PCP today for yet another antibiotic. I am still coughing up mucus (which I also have coming out of my nose via a sinus infection) and had a lung x-ray today to make sure I don't have pneumonia. Neither of us thinks I am in CHF (my weight has not increased and my fingers haven't swollen) but I am wondering what caused those docs to diagnose CHF as bronchitis.
        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


        • #5
          Mary, sounds like you are in a good place finally. Hopefully now things will go your way. Are you an in patient? Am keeping you in my prayers.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

          Comment


          • #6
            Cyn,

            I did have a little bit of coughing. But, the phlegm was a clearish color. They do believe I've got something going on too but my breathing was horrible when they checked today. They said I had no lung sounds in the base of my right lung! I also had no weight gain. They said because I wasn't eating that I was losing weight and balancing it off. But, my feet had no swelling either.

            Midge, I am inpatient

            Mary S.

            Comment


            • #7
              Well Mary, I certainly hope that you (and I) both get straightened out soon! I hope that your evaluation goes well and that you are soon on your way.

              BTW, my the stuff that I am coughing up is still yellow/green, so hopefully I am being treated for the right thing! Thanks for comparing notes.
              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


              • #8
                Thinking of You

                Just wanted you to know that I was thinking about you and letting you know you are in my thoughts and prayers! 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


                • #9
                  Thanks, Mary for keeping us updated. I am praying that you finally get good results and help. I am not surprised that your "bronchitis" was chf as recent events have convinced me that many cases of bronchitis that I supposedly had for years were in fact at least primarily chf. One thing that I learned from a doc in Beijing is that any respiratory infection in people with heart failure often pushes people into full fledged chf, so the idea that you had something else going on first makes sense.

                  I would really want to know about the dobutamine thing to make sure that it is appropriate for your situation. I read about it online and it sounds like it might be the wrong med for you, but I am not sure of that. The reason I looked it up was because it was the dobutamine in a dobutamine stress echo that sent my heart into major problems. My situation is quite different from yours, but I would still want to check this out before I agreed to try it.

                  Rhoda

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                  • #10
                    Mary , good luck with all the tests and treatment , keep us posted.

                    I am not surprised about the CHF. I had many trips to the ER, pcp after a nights of misery each time and was always told " bronchitis " or "pnemonia" even after xrays. In retrospect, specialists looking at my history and xrays do not believe it and one doctor did listen to me and gave me IV Lasix. Like you report , the flood gates opened. I also had the clear to white mucous and I did not have evidence of peripheral edema and only minimal crackles in lower base of lungs. I think it is more common for HCM ers to hold their fluid in the abdomen and more of a generalized edema picture. It seems this pattern until it is so bad and so much the whole lower torso also swells . After all those incidents , taking a regular dose of Lasix daily, having a myectomy and managing my CHF vigilantly has kept me out of acute CHF.

                    Hang in there Mary.

                    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


                    • #11
                      I have problems like you are having too they just up my lasix and what comes up on me is white and frothywhen i have bronchitis it turns yellow, I hope you get to feeling better, Isn't it weird that in the state of Virginia you have to be bed ridden to go on the list, I hope things turn out good for you and you are put on the list GOOD LUCK


                      Shirley
                      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

                      Comment


                      • #12
                        Thanks all.

                        Today so far has consisted of an Echo at about 7 this morning. I had had a really rough night. I got one of the absolute worse headaches of my life. But, this hospital is really on the ball during the night they have a PA and an ARNP so it was immediatly taken care of.

                        I also had a PICC line placed in thank goodness. They have drawn my blood six times since being here with a lot more to come.

                        I'm also due to start the dobutamine as soon as the confirmation x-ray of picc line placement comes back.

                        The doctor explained to me that we really aren't treating the HCM anymore. He called it decompensating heart failure. In other words my heart is not pumping hard enough anymore which is why I have fluid every where. They said that that is why my bp is so low. That the extra fluid and salt were the last things that I should have been doing. So, I'm on a 1500cc fluid restriction. At least until they can dry me out and see where I stand.

                        These guys seem really on the ball. A far cry from three years ago

                        Mary S.

                        Comment


                        • #13
                          Dear Mary

                          I was put on doputamine when I was in the hospital waiting for my transplant. It is used a lot in people waiting for a transplant. I had a hard time with it so they lowered the dose to a pediatric dose and all was well. Anytime you have a question, ask them that's what their there for. I know a lot of people who are on doputamine at home and do o.k. Stay well and keep us informed. You are in my thoughts and prayers.

                          Karen
                          Karen Cicconetti
                          Heart Transplant 1998
                          Don\'t take your organs to heaven
                          Heaven knows we need them here

                          Comment


                          • #14
                            The PICC line will certainly get a workout during this stay! As far as blood draws, my personal record is 13 vials taken in one sitting when they were doing workups on me at UCLA. There were a number of blood tests taken after that (6 more vials worth) when they were running additional medical screening tests. (At least one of those tests was obscure enough that they sent the sample from California to the Mayo Clinic in Rochester MN to run it!)

                            Have fun??? (Good luck!)

                            Rob
                            --Living life on the edge .. of a continent!
                            Charter member: Tinman Club

                            Comment


                            • #15
                              Mary,

                              Hang in there girl. It sound like you are getting totally worked over. I'm glad that it seems everyone is on the ball - that's always reassuring when you are in the hospital

                              Keep the updates coming and good luck with all the tests etc. to come

                              John
                              41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

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