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Update on my liquid around lungs post myectomy


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  • Update on my liquid around lungs post myectomy

    As you may recall I had liquid around the lungs and they kept me there 4 days and then sent me home with a lasix pill to be taken each day. I was to return in a week. On the day before I was to return I got very short of breath and decided to have my sister drive me to the Lutheran emergency room in Ft. Wayne. I was in their emergency from 12:00 noon until 10:15 that night before they could find me a room. I thought maybe I would have to stay in emergency all night. Either that or they might do what my grandfather said that he would do when there would be so many people and I would wonder where everyone would sleep. He said that he would just wait until I went to sleep and then he would hang me up on a hook.
    This time they called in a lung doctor and also I was given a c-scan. It showed more liquid than the regular chest x-rays did. The lung doctor didn't come until about 6:00pm that next day and he drained off the liquid. I just sat on the edge of my bed and they put a pillow on my stand and I leaned on that and he sat on my bed behind me and drained it. He got about one and a half pints from the left lung. He did not leave a drainage tube in. It was sent to the lab so that they could try to grow cultures, but so far they haven't found anything. I was kept there again 4 nights so that they could adjust the amount of lasix I needed to keep the liquid down. I felt so good the next day after they withdrew the liquid that I was out walking up and down the halls at my normal speed.
    They sent me home with 40mg of lasix and also some potassium and a steroid pack of pills to be taken for a limited time. I returned to the lung doctor yesterday and received a good report. He said that the liquid was down in both lungs and my blood workup was all right. I feel as though I am starting to get my life back again.
    I asked him about a cough that I had even before surgery and he gave me a breathing test and found that I have a little asthma. The numbers are not high enough for full blown asthma but they are significant enough that he thought I should have some medication so I was sent home with a puffer. I return to see him again in 2 weeks.
    Another concern I have is that they don't think twice about ordering x-rays for me. I have had so many including those at Cleveland, the emergency room visits and my hospital stays in Ft. Wayne. Are x-rays as dangerous as they used to be?
    Bettie-age 66 and I had my septal myectomy in Cleveland Jan27, 2005
    septal myectomy on Jan. 27, 2005

  • #2

    I'm glad they got this fluid under control, you are an inspiration for other people here on the board to have had a myectomy at 66

    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


    • #3
      Hi Bettie,
      Let’s see now. First, I’m very glad to hear that you are feeling better and are up and around. That is wonderful news.

      Second, I really like your grandfather’s sense of humor. It reminds me of my daughter – in reverse. When she was about four my wife saw her go into her room, but a few minutes later when my wife followed she found the room empty. She called her name and the sliding closet door opened, my daughter stuck her head out and said, “Going up.”

      Now about all the x-rays, I was in the hospital nine times in 2003, and five times in 2004 – plus all the ER visits. It seems that each doctor from each profession ordered his own set of x-rays. On top of that the doctors I see on the outside frequently order x-rays also – and let’s not forget the dentist. I came to believe I was going to glow so much that I would be able to read in bed without turning on the light.

      However, I can tell you unequivocally that if they keep x-raying you for the next forty to fifty years – you’re going to be an old lady. You’d best keep exercising so that when you pass the century mark you’ll still be able to get around. (And don’t forget to keep posting.)


      • #4
        Glad to hear you are feeling better. Please contact your doctors at Cleveland and let them know what is going on and make sure that your local docs are commuicating with Cleveland.
        Stay 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)


        • #5
          Re: Update on my liquid around lungs post myectomy

          Originally posted by Bettie
          Either that or they might do what my grandfather said that he would do when there would be so many people and I would wonder where everyone would sleep. He said that he would just wait until I went to sleep and then he would hang me up on a hook.
          Dang, is that why my neck is always so stiff after a night in the ER?!!


          I'm so happy that they were able to get the fluid off of you and that you are feeling better. Let's hope that this was a one-shot deal and the fluid stays away for good this time!

          I've been very concerned about the x-ray issue myself. It became enough of an issue five years ago in fact, that my nephrologist in Montana even expressed his concern over it. At that time i'd already had a ton of x-rays one right after another for the kidney cancer and at least 4 sets of CT-scans, each of which is equivalent to multiple individual x-rays. During our last follow-up together, he said that we really need to be careful about the number of x-rays i have in the future.

          Well, that went out the window pretty quick and needless to say the x-rays have just not stopped coming. Every time i turn around i'm having another x-ray or CT-scan for some reason, and telling them that you just had one from another doctor several hours earlier doesn't seem to mean anything. Sure, the technology has changed since the days when you stood in front of a flouroscope for hours at a time, had your innards lit up, and got cancer on the spot. But nonetheless, the sheer quantity that are being performed is cause for concern and i understand where you are coming from.

          I'll be interested in hearing others' opinions on this, but more importantly i'm very glad to hear that you are feeling better.

          Take care,

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


          • #6
            Hi Betty,

            I am so glad they took care of that fluid problem, and I'm happy to hear that you are feeling better.

            Thank you for updated us. I hope you continue to feel better and better.

            Very well wishes,

            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.


            • #7

              Hope you are feeling better. I too had to have liquid removed around the lungs after I got home from Cleveland. The good news is it was a one shot deal, went away and never was an issue again.

              BTW, nice to see a fellow Hoosier (Indy area).



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