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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Where are people today

    I have been checking from time to time and wondering if my computer is working i have never seen this board so quiet

    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

  • #2
    I'm here Shirley . Did you need something ?? I guess it was all the chocolate everyone must have eaten on Valentines Day. It is like the HCMer's alcohol. We are maybe a little lethargic today??

    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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    • #3
      Shirley,

      I'm here every day, reading and learning. I just sit in the back waiting to bounce...

      TI double gggrrrr ER1
      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

      Comment


      • #4
        Shirley.
        I was sure something had malfunctioned along the way as I checked the board several times only to find there were 0 messages. It made me realize how much I look forward to the chatter and exchange we have.
        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

        Comment


        • #5
          I really miss Burton. I read this forum everyday but I don't post much. I always looked forward to Burton's humour!!! As anyone talked with him about how he is doing?

          Comment


          • #6
            We talked for a little while last night. He is still having a lot of problem with pain. His arm is still swollen and painful from the fistuala surgery over a month ago. He is seeing a pain management specialist and the recommended the pain patch like I have and he said it works some but not quite good enough. So, the next time he goes it will probably have to be increased. But, he still has a positive outlook.

            Mary S.

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            • #7
              I hope he feels better soon.

              Reenie
              Reenie

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

              Comment


              • #8
                Hi again folks,
                I guess it’s time for another status report. Have some good and not so good things happen.

                First, I got my Hemoglobin A1c down to 7.0 – the top of the desired range. I did it with 310 units of insulin a day. I increased it to 330 in an effort to get to the middle of the desired range, but then the insurance stepped in and said I could have as many types of insulin as I could get prescriptions for – but no more then nine bottles of each type. I appealed and was denied. I appealed the denial and was again denied – and the denial was upheld by an independent review. I am now on three different types of insulin, and if I can get a few samples from time to time, that should do it. I get the Novolin R from the VA – 13 bottles, and that is a major hassle.

                The manufacturer says you can keep the insulin un-refrigerated for up to thirty days, but thirty days after reaching room temperature it must be thrown away. The VA ships it with no ice packs so I arranged to pick it up directly from the refrigerator at their dispensary – a 45 minute drive on the freeway. After making all the arrangements and getting all the approvals, I showed up with my ice chest to find they had taken the insulin out of the refrigerator and put it in a paper bag on the shelf. A giant hassle later they gave me fresh insulin from the refrigerator, but I’m sure they put the exposed insulin back into the refrigerator for some other unsuspecting person to get.

                Well, now that my diabetes is generally under control, my Familial Hyperlipidemia is also more or less behaving. My cholesterol was in the normal range, and my triglycerides were within 100 points of normal – a remarkable feat for me. I lost my endocrinologist as he retired, so he transferred me to the new chair of the department at the Nevada School of Medicine. I hope it works out well. I fired my endocrinologist, as he just got too insufferable, and I transferred to the doctor who saw me in the hospital when I was there before Thanksgiving. First impression was that he talks straight, so I hope this works out also.

                Having restricted my diuretics to 40mg of Lasix has done wonders for my diabetes, bringing down the creatinin to 2.4, but I’m still leaking a lot of protein. My diet has now gone full circle, and I can now eat a lot of meat again. Of course the diuretic restriction has left me full of fluid, with CHF and a dry cough. We changed from Verapamil to Diltiazem TR (360 mg for each), and doubled the Atenolol to 100 mg /day. I dropped around seven or eight pounds of water with the change, but I’m still packing a lot.

                It’s now been five weeks since my fistula surgery, but my right arm is still swollen. My bicep is numb as are spots in my forearm, and my hand is also swollen. Working with the ball to build the fistula has aggravated the arthritis in my hand. It now takes a couple of hours in the morning to get my hands working properly, although it still hurts to make a fist with either hand. My right pointer finger sticks in the bent position, and it takes a while to work that out also.

                I still have a lot of arthritis in my back, hips, tail bone, shoulders, neck, arms and legs. I now walk with a cane which helps a bit, and I try to reserve the scooter for longer occasions like the mall, supermarkets and department stores. I am being seen by a pain specialist who has me on a pain patch. I see him again in a week and will probably wind up with a stronger patch. Although this one helps, I still have a high dose of pain with it. Funny thing, the pain patch has lowered the pain level enough that I don’t get angina anywhere near as much as I used to. I guess my stress level has improved a bit.

                The insurance has given me a free membership at the 24 hour Fitness gym. I went and tried the bike for five minutes at level 1 – but it knocked me out for a week. My cardiologist suggested I try it for two minutes per session at a slow speed – but don’t push it. I tried it today and hurt – but hope to grow into it. It was at level 1, age 72, 50 RPM, cardio workout. It’s amazing how little I can do. Hopefully things will improve.

                Now we come to my wife Shirley. Her epilepsy has broken loose again. We tried to see her neurologist, but he was not taking clients while they were building offices and exam rooms for him at the hospital (He was head the new neurology department.) Well, they obviously came to a disagreement because he left the hospital, which left Shirley completely adrift. Six months ago I was told to see a neurologist / stroke specialist because of a finding by an MRI of my brain. I hassled with the insurance company, and finally found a doctor, and have an appointment in March. I got an emergency appointment with this doctor for Shirley on Friday. He is a half hour away by freeway, but if he can help it will be worth it.

                Shirley is also having problems dealing with both her and my illnesses and has become depressed. She will be seeing a neurologist tomorrow (Thursday) and a psychiatrist next Thursday. Hope they can pull her out of it.

                I know this is a long post – but I’ve been gone awhile. I’ll try to keep more in touch if and when I can.
                Burt

                Comment


                • #9
                  I'm sorry so many things aren't going well for you right now but I'm really glad the blood work seems to be a lot better. Hang in there and hopefully all will fall into place soon.

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    Hi Everyone,
                    Glad to hear your status report, Burt. I hope things even out for soon and you are able to feel better (your wife, too). Maybe one of my trips into LV we can meet!

                    I haven't been on the board as much because I have three heart screening events happening this spring. I was in Las Vegas last week and Tucson yesterday & today, and I continue to work on heart screening plans for Peoria, too. My next heart screening event is March 5th, Peoria School District. Then March 12th Tucson High School. Both events take place in Arizona. Then on April 2nd & 3rd we will be in Las Vegas for a two day heart screening event for the Clark County School District (5th largest school district in the country).

                    Then on April 16th we will be holding our own golf outing, the "Heart of Pride" Charity Golf Tournament at ASU Karsten Golf Course. This event is our second event that we have done with my son's high school football booster club. This year should be fabulous with prizes coming from NY Jets, AZ Cardinals, UofA Football, ASU Football, and many local businesses. Then we have lots of great opportunities for our organization to raise funds and awareness of HCM.

                    I recently make great connections with the region and national Athletic Trainers Associations. Spring baseball is starting and several teams have approached me about heart screenings for their athletes! That could turn into some great community support. My feelers are out for help from the NCAA for community involvement with the heart screening effort. Plus, I have been getting some great help from Kansas State University into Washington DC for our Lisa and support of the "Teague Act" as she posted recently. I might have to go to Washington soon!

                    A few weeks ago I did an interview with ESPN Magazine on the heart screening effort that The Anthony Bates Foundation has been doing for the last three years. The article should be published by the end of the month. As soon as I get the exact date, I will let you know...or you will read about it here.

                    All in all, lots of great things are happening in Phoenix and the Southwest. Definitely not a day goes by that I don't wonder what it's like to rest. I know that someday all the great work that we all do for the cause will help young people everywhere.

                    Until then, I can only dream about some very important things....heart screenings for all our young people; cardiologists everywhere will refer HCM patients to the specialists; that there will be AED's (Automatic External Defibrillators) in all our schools and public buildings; and everyone will be able to pronouce Hypertrophic Cardiomyopathy!

                    Hope to see a lot of you at the annual meeting in June! I'm planning on attending. I just have to come up for air long enough to make my reservation!

                    See you soon,
                    Sharon Bates

                    Comment


                    • #11
                      Wow Burt! You sure have been busy while away from the board! Be assured of our prayers on behalf of yourself and your dear wife.
                      Peace,
                      Leon
                      God Squad co-moderator
                      Nothing is as gentle as strength and nothing is as strong as gentleness

                      Comment


                      • #12
                        Burt, so glad to hear you are still kicking. Sounds like things are slowly improving. I sure hope Shirley can get the help she needs, I am thinking of both of you.

                        We missed you. Don't stay away so long!!!

                        Take care,

                        Pam
                        It's not what you gather, but what you scatter that tells what kind of life you have lived.

                        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                        Comment


                        • #13
                          Burt - great to see you back. Sharon - you are moving mountains! Great job! Looking forward to seeing you again in June.

                          As for me, we've found a few more fractures from that fall 3 wks ago. We knew I had broken the lt elbow. We've since found a fracture in the rt knee and yesterday, determined that the pain in my lt wrist isn't really just in my head. It is broken in 2 places and the MRI shows a cartilage injury there also. The rt elbow, he swears isn't broken, just tendonitis. It's been 3 wks, and the pain is slowly either resolving or I'm getting used to it, but I'm finally able to type a bit. All things considered, I'm really doing very well - have always been able to walk on the knee, thank goodness. Linda

                          Comment


                          • #14
                            Oh dear Linda, heal well and heal up for June. You and all my friends on the HCMA message board remain in my prayers! Burt, I continue to send you healing prayers with mountains of love!

                            Sharon

                            Comment


                            • #15
                              Oh Linda

                              That was a nasty fall, you rest up and i hope to see you also in June, how could you walk around like that i would be in tears



                              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

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