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  • My mother has HOCM

    Hi all,

    My mother, 64 years old, was diagnosed with HCM over 10 years ago. She recently developed some serious symptoms (water retention, shortness of breath, fainted a few times).

    My mother lives in Cairo, Egypt. She was checked in at a Cardio center there and after extensive tests the doctor recommended she performs alcohol septal ablation. She was sent back home for two weeks. She is currently taking lasix (diuretic) to reduce the water in her body.

    My research on the net shows that both surgery and catheter ablation have associated risks. We are not sure if she should perform the ablation or not.

    Does any one here has any experience with doctors/hospitals in Egypt. Can you make recommendations on what to do or where to go?

    My mother is also diabetec (type II I think, just takes pills). Should that be considered as a factor in her treatment?

    After doing some research on HCM, I realized that it is a genetic disease that can be passed from generation to generation. Is there a recommended screening test that her siblings/sons/grandsons should perform?

    Thanks,
    Mohamed

  • #2
    Re: My mother has HOCM

    Hello and welcome to the HCMA. You have asked a lot of very good questions here and I'll try to help with some of them.

    First of all, you mentioned that your mother has fainted a few times. Do you know if she has talked to the doctor about the possibility of getting an implanted defibrillator to reduce the risk of sudden cardiac death? There are 5 main risk factors and fainting is one of them.

    You said that she's living in Cairo, Egypt. Lisa, the president of the HCMA, may know of doctors there, but is there any way that your mother can travel to the US? If not, Lisa will be happy to talk to you or your mother about doctor choices in Egypt.

    Only a specialist can tell you for sure if the septal ablation or the myectomy (surgery) would be best for her. They do both have their own complications, but for now - although ablation is the better choice for some patients - the myectomy is considered the most proper course for most paitints. Remember, every case is individual. The ablation may be best suited for your mother. Please continue the search for a doctor who knows a lot about HCM.

    About HCM being genetic: If possible all of your mother's siblings and children should be screened with an EKG and an echocardiogram. If they are clear of the disease at this time, they should be retested every 5 years. Grandchildren who are under the age of mid-twenties might be tested more often, especially if the parent has HCM.

    If you have any more questions please don't hesitate to ask. We're here for the support as well as to help disburse as much information as possible.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: My mother has HOCM

      Hi Mohamed,
      Just to put things in perspective, I will turn 72 this coming week-end. Although I was just diagnosed with HCM the first of the year, I’ve had the symptoms all my life. At about the age of four the doctors told me I had an athletic heart and a murmur – prime indicators of HCM, but they just didn’t know about it in those days.

      I also inherited hyperlipidemia (to much cholesterol and triglycerides) which I take three medications for, and the doctors are not happy with my levels, but there’s nothing more to take. As a result I’ve had four heart cath’s with stents to date, plus cath’s and stenting of both renal arteries and iliac arteries. I am about to have an ultrasound to check if I need another cath and stent in my left leg and surgical removal of the blockage in my right femoral artery. My kidneys are so blocked up the bottom half of the right kidney doesn’t work anymore.

      The hyperlipidemia (high triglycerides in particular) brought on a case of diabetes type II (Type I means you were born with it.) I take pills and a large load of insulin, and I’m fighting to get the blood sugar levels under control.

      Regarding the HCM, I had two HOCM attacks last December, leading to hospital stays. A dramatic change in my drugs subsequent to the diagnoses stopped the HOCM attacks so far, but I still am Short Of Breath (SOB), have a tight chest, dizziness, heart pains, a dry cough, and flooding of my legs, ankles and feet. Actually, I think my whole body is swollen, if my watchband is any indicator.

      Oh yeah, May 2003, when I had my fourth heart cath and stenting, I was on the table for six hours over two days. I wound up with pneumonia, my blood pressure went to 70/40, and my kidneys almost failed. This was followed by passing out a few times and a stroke. Luckily the stroke left no permanent disability.

      The reason I spelled all this out for you is to show you the things we can survive in today’s world with the proper care. That’s the key – proper care. The fact that you mom was diagnosed shows that somebody was on the ball, so that’s a plus. The question now is, what to do next. If it is possible I would suggest getting her into one of the top three hospitals for HCM in the states, and getting a complete work-up to see what is the best course to follow at this time.

      I would strongly suggest talking to Lisa and see what she recommends, and explore all the ways she can help. She’s not our adored leader for nothing – she earned every accolade. Take advantage of her open invitation to help.
      Burt

      Comment


      • #4
        Re: My mother has HOCM

        Thanks to all the replies so far. The information and support I am getting on this board is very helpful.

        Unfortunately my mother cannot travel to the US due to her health. But, I just found out that the cleveland clinic can provide a second opinion for international patients over the Internet.

        What number could I reach Lisa at? I tried the number listed at the bottom of the page (973-983-7429) and left a message, hope this is the correct number.


        Thanks again for the help and will keep you updated with all questions.
        --
        Mohamed

        Comment


        • #5
          Re: My mother has HOCM

          Burton,

          I wish you a happy upcoming 72nd birthday and a lot of happy healthy times to come.
          Thanks for sharing the information as it shines some hope on the situation.
          --
          Mohamed

          Originally posted by Burton Borrok
          Hi Mohamed,
          Just to put things in perspective, I will turn 72 this coming week-end. Although I was just diagnosed with HCM the first of the year, I’ve had the symptoms all my life. At about the
          age of four the doctors told me I had an athletic heart and a murmur – prime indicators of HCM, but they just didn’t know about it in those days.

          I also inherited hyperlipidemia (to much cholesterol and triglycerides) which I take three medications for, and the doctors are not happy with my levels, but there’s nothing more to take. As a result I’ve had four heart cath’s with stents to date, plus cath’s and stenting of both renal arteries and iliac arteries. I am about to have an ultrasound to check if I need another cath and stent in my left leg and surgical removal of the blockage in my right femoral artery. My kidneys are so blocked up the bottom half of the right kidney doesn’t work anymore.

          The hyperlipidemia (high triglycerides in particular) brought on a case of diabetes type II (Type I means you were born with it.) I take pills and a large load of insulin, and I’m fighting to get the blood sugar levels under control.

          Regarding the HCM, I had two HOCM attacks last December, leading to hospital stays. A dramatic change in my drugs subsequent to the diagnoses stopped the HOCM attacks so far, but I still am Short Of Breath (SOB), have a tight chest, dizziness, heart pains, a dry cough, and flooding of my legs, ankles and feet. Actually, I think my whole body is swollen, if my watchband is any indicator.

          Oh yeah, May 2003, when I had my fourth heart cath and stenting, I was on the table for six hours over two days. I wound up with pneumonia, my blood pressure went to 70/40, and my kidneys almost failed. This was followed by passing out a few times and a stroke. Luckily the stroke left no permanent disability.

          The reason I spelled all this out for you is to show you the things we can survive in today’s world with the proper care. That’s the key – proper care. The fact that you mom was diagnosed shows that somebody was on the ball, so that’s a plus. The question now is, what to do next. If it is possible I would suggest getting her into one of the top three hospitals for HCM in the states, and getting a complete work-up to see what is the best course to follow at this time.

          I would strongly suggest talking to Lisa and see what she recommends, and explore all the ways she can help. She’s not our adored leader for nothing – she earned every accolade. Take advantage of her open invitation to help.
          Burt

          Comment


          • #6
            Re: My mother has HOCM

            Mansour, you called the right phone number. I'm sorry I forgot to post it earlier. Lisa is typically in the office on Tuesdays and Thursdays. She will probably call you tomorrow.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Re: My mother has HOCM

              Hi all,

              The case is more complicated that what I thought.
              Her boday has been retaining water for several months now. Although she is a retired pharmacist she refused to take any medications for the extra water, she actually refused to even tell us that there is a problem.

              Her right leg is currently inflamated and swollen with water. It seems to be a pretty bad situation. She developed a small puncture in the shin and she that puncture is draining water. Lately a white substance started draining from the small puncture. A dermatlogist checked her and recommended she cleans the area with a disinfectant.

              Her cardiologist says he cannot do the catheter before her legs are in good condition. He ordered her to keep her legs elevated all the time (I think that is because elevating the leg will help the circulation and reduce water retention in the legs)

              For some reason she is in pain when she elevates her right leg (the one with the small puncture). She can't take that pain so she doesn't elevate her legs at all.

              I would greatly appreciate if anyone can explain why she needs to elevate her legs, what is the cause for the pain in the right leg, what can we do to alleviate that pain, ...?

              Thanks,
              Mohamed

              Comment


              • #8
                Re: My mother has HOCM

                This sounds like it is possibly congestive heart failure. That means that the heart is not pumping efficiently and is letting water build up in her body. She probably really needs the medication to help get rid of all that excess water. These meds are called diuretics. Being a pharmacist, I'm sure she knows all about that. It will cause her to stay near a bathroom for a while, but she will feel a lot better when the water is gone. Good luck.

                Reenie
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

                Comment


                • #9
                  Re: My mother has HOCM

                  Is Congestive Heart Failure the same as HCM or caused by HCM?
                  --
                  Mohamed

                  Comment


                  • #10
                    Re: My mother has HOCM

                    CHF results after the heart that is cardiomyopic has sustained damage enough to result in the heart not pumping adequately for the fluids electrolytes and toxins to be filtered through the kidneys and liver, for the blood to be sufficiently re-oxygenated , given new nutrition and balance of the fluids to occur. When the heart overworks in an attempt to create a balance so to speak , there is a backup of all the things in our systems that are supposed to help maintain us.The fluid becomes trapped in small spaces and our hearts must pump against gavity to boot;therefore elevating the legs is a must. Unfortunately there are also chemical reactions that occur and contribute to the worsening of the failure thereby making the failure more of a critical situation.
                    Iam concerned that your mother who may have cellulitis and even a possible deep vein thrombosis needs urgent care. Often time a solution of dackens is used to keep the area disinfected. Your mom will be aware of this bleach type mixture. I am afraid there is too much going on here for any of us to know what is exactly wrong .

                    I repeat your mom needs medical attention to manage the large fluid removal safely and to ensure she does not get an infection in that leg . It sounds like one may be started watch the drainage in the meantime for color yellow /green , check temp of leg for sense of heat , check her temp, weigh her daily , measure the circumferense in the same place on the leg, do both legs and write it down. Keep legs elevated up 15-20 min. , get her up and walk ,to the bathroom and then back with legs up. She needs diuretis ASAP.

                    Good luck . 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
                      Re: My mother has HOCM

                      CHF isn't HCM but it can be related. CHF is simply caused by the heart not pumping efficiently. The heart is too overtaxed to do a good job and fluid builds up. You can find a lot of information if you use google to look it up, but some of that info is really technical. Good luck.

                      Reenie
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment


                      • #12
                        Re: My mother has HOCM

                        She is on lasix now to drain the water in her body.

                        The inflamation and water in her legs are causing great pain. She refused to elevate her legs because of the pain. Is there any medication she can take to help with the pain?

                        Thanks,
                        Mohamed

                        Comment


                        • #13
                          Re: My mother has HOCM

                          The lasix is good but she might need something along with it or even an IV to start the process. As far as the pain goes, I would guess she should talk to her doctor. My bet is that Tylenol, or whatever the equivalent in Egypt is, would be all right, but please ask h er to be sure before she takes anything else at this point.

                          Reenie
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment


                          • #14
                            Re: My mother has HOCM

                            Tylenol (or whatever name it goes under in Egypt) is chemically acetaminophen. Your mom should recognize that, and be able to get some.

                            At the moment I am on both 40mg of Lasix (furosemide) and 5mg of Metolazone, fighting my own water retention problems. I can understand the pain in the legs, and possibly she also has problems keeping them still. If she can tolerate lying in bed, she should be able to get her legs level with her hips, and that would help a lot. However high she can tolerate the elevation of her legs is that much to the good.

                            I’m also concerned with the seeping wound on her leg. If that does not start to clear up soon, she should seek professional help. I am a diabetic also, and my feet and legs are constantly being checked whenever I go to my endocrinologist.
                            Good luck - Burt

                            Comment


                            • #15
                              Re: My mother has HOCM

                              Thanks for the tylenol advice. We will check with her doctor.
                              She had a doctor check her seeping wound two days ago and he cleaned the leg with Potassium Permanganate. They called in the doctor after seeing some white stuff coming out of the wound.

                              What should be her daily water intake? She is now taking a little under a 1 liter per day. Her cardio said to sip that water slowly. Should she take more water per day?

                              --
                              Mohamed

                              Comment

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