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jujemendoza2002 Find out more about jujemendoza2002
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  • #16
    Re: hcm petpeeves

    Golly Gee,
    You didn’t think the story ended there did you. I got a call from the epilepsy clinic who wants to check out some information with our PCP before she contacts the insurance company to confirm that they really authorized the referral. Well, my PCP is in El Salvador this week on a mission. Either her nurse (who’s pretty sharp) will supply the information, or we’ll have to add a week to this project. I don’t know why the clinic doctor would organize and run a five hour seminar trying to attract people to the clinic, while his staff is trying desperately to keep people out.

    There’s more. Just as I was getting ready to leave the house I got another insulin delivery – but first, let me give you some background. My endocrinologist had me on both the short lasting Humalog insulin and the long term Vantage insulin. As my use grew, the doctor wrote two prescriptions, stepping up my 90 day supply from three bottles of each to five bottles of each. This was just before he left on vacation for the month of July. When I got the prescriptions home I noticed that they were both for Humalog, with none for Lantis. I crossed out one Humalog and wrote in Lantis, and sent them in.

    This caused a great delay at the pharmacy, and when I called they said that the doctor hadn’t initialed the change for the Lantis, so they couldn’t fill it. I asked them to put a rush on the rest of the order, then called the doctor’s nurse who gave me a 90 day supply of Lantis. The only problem was it was a half hour highway drive each way to his office.

    A few days later I called again, as they still hadn’t shipped the order and I was about out of the Humalog. This led to another trip to the doctor’s office to pick up two bottles of samples of that. Yesterday the order came – five bottles of Humalog. OK? Are we happy? I now had five sample bottles of Vantage, two sample bottles of Humalog, and the five ordered bottles of Humalog. I was set.

    Well today I got another shipment, just as I was about out the door. I received six bottles of Vantage (I now have at least a six month supply of this on hand) plus I got a number of my other prescription drugs which I hadn’t ordered, - but I guess they thought I needed them. I did send them prescriptions for three other drugs, as the previous prescriptions had expired, but they sent back a note saying I can order one on August fifth, a second on the fourteenth, and the last on the sixteenth. Yesterday my wife got one of her drugs from them in the mail.

    We can only order a 90 day supply of each of our drugs, and my wife and I each take a goodly quantity. I thought, “Wouldn’t it be much simpler to order all the drugs at once, and do it once every three months?” No, no, no. It seems we have to order a couple of different drugs every week. - Keeping track of who needs what and when has developed into a major project.

    Life can be a scream – sha-boom, sha-boom.
    Burt

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    • #17
      Re: hcm petpeeves

      Shirley and Sarah,

      Thanks for your posts and your words of encouragement.

      It is hard. Sarah, you are right about pushing forward. Those who know us well and love us know our limitations and that we have to take a little longer to do some things that used to be easier. You are so right about having to slow down, like on hikes, and stop and "smell the flowers". There are times that I use that as an excuse to stop and rest so that maybe nobody will notice.

      Also I know that you have to keep pushing yourself, but your quote about "no effort no progress" is a real motivator. Thanks, sometimes we need those reminders.

      I learn from you all each time I visit the site. Thanks so much. And Shirley, you are not alone either.

      Best wishes,

      Deb

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      • #18
        Re: hcm petpeeves

        A few of my biggest pet peeves:

        People who don't understand, or even try to understand what HCM is or how you get it, yet feel qualified to lecture me about how I should take care of myself. My cholesterol level is low, my blood pressure is 115/80, and my arteries are clean as a whistle folks!

        Having a mountain bike parked in the corner of my apartment that's only ever going to be ridden on pavement now.

        The uncertainty. This one seems to be a biggie for everybody. No matter how successful the treatment, there's always going to be a measure of uncertainty inherent to HCM.

        Having a head full of all kinds of wonderful things i'd love to do in life, but a body that doesn't always allow me to do them... like skydiving. Woo hoo! I always said that i was going to try that if it was the last thing I do. With HCM... it really might be the last thing i do! LoL. Maybe i'll just save that one for when i'm 96 and on my death bed. "Hey docs, there's just one more thing... "

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

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        • #19
          Re: hcm petpeeves

          My pet peeve: like many others is the uncertainty. The progression has been from modest symptoms to moderate. From one med to five. From no AF to too many AF's. From ignorance to increasing knowledge. From thoughtful caring health care to object oriented passage, from becoming comfortable with the new symptoms to getting more that require more changes, from thinking I understand something to finding out that it was only partially correct, from being elated to wake up from one more cardioversion to being told we don't know what to tell you may happen next...from trusting health care providers to being denied help because the provider did not know me or was uncomfortable...from being physically capable to unable to chase my kids in the yard....it seems that no matter how much I seek to understand or alter it is never enough and I can't know what is next. The uncertainty is challenging...

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          • #20
            Re: hcm petpeeves

            Four simple letters...
            I H S S

            I - It is NOT idiopathic - we know where it comes from!
            H - Yes there is hypertrophy
            S - Subaortic - Well not all thickness is located in that region - some is apical
            S - Stenosis - NOT all HCM pts have stenosis

            The proper name is Hypertrophic Cardiomyopathy (with obstruction - in some cases)

            :P
            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)

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            • #21
              Re: hcm petpeeves

              Petpeeves:

              Having to sit up and try to fall asleep when I really want to, and need to, lay down and get some rest, but I cannot because of tightness in the chest. Is this a problem for others? I really have an issue with this. Last night and this morning was terrible.

              No more running. No more tennis. No more basketball . . .

              Yes, as many have already stated . . . uncertainty.

              Peace,

              Mark

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              • #22
                Re: hcm petpeeves

                Burton
                I'm sorry you had a bad day but glad that everything worked out. You have quite the sense of humour. I love it.
                Tammy

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                • #23
                  Re: hcm petpeeves

                  To tell you the truth Tammy, it’s kind of a game. I grunt, groan, and kvetch a lot, but I can’t come out with a good ‘Woe is me’ without breaking myself up. I really can’t take it all that seriously.

                  Reminds me of a story attributed to Benjamin Franklin when he was our ambassador to France, trying to get the French to enter the American Revolution against the British, and the French were dragging their heals, trying to stay out of it.

                  In those days it was a grievous insult to paint someone’s picture in the bottom of a chamber pot, and in frustration from his constant prodding, one day the king announced that he had Benjamin Franklyn’s portrait painted in the bottom of the queen’s chamber pot.

                  Benjamin Franklyn immediately retorted, “Well, the location may not be all that great, - but the view is spectacular.” Old Ben became the darling of the court, and if you recall your history, he was ultimately successful in his mission. Sometimes you just have to have a sense of humor.
                  Burt

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                  • #24
                    Ok, now i understand the meaning of 'petpeeve' / to lazy to consult a translator every time

                    Ah well, just like Jen, i positively absolutely most of all hate my irregular runs of A-fib - yes with a racing heart too. I'd rather be tired than having these - but hey they usually come when tired ah how bad coincidence.

                    Oh life sometimes seems excellent yes: as i type this, listening over headphones on my laptop to some beautiful MP3's quasi streaming in over high bandwidth cable from a newsserver somewhere makes my old ticker a bit relaxed too

                    Ad
                    \"Hope is disappointment postponed\"

                    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                    Meds (current) sotalol, dabigatran, furosemide.

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                    • #25
                      Petpeeves:

                      (where to begin)

                      -- the harsh chest pain when walking, picking up something or bending down and standing up.

                      -- the head rush I get and shortness of breath if I do not bend using my knees.

                      -- I'm so tired of being tired.

                      -- cannot lay down on my left side.

                      -- I'm always propped up.

                      -- NO CHOCOLATE.

                      -- NO ALCOHOL.

                      -- not too much sugar.

                      -- not too many carbs.

                      -- leg pain.

                      -- bloating like a blow fish everyday.

                      -- A-FIB

                      -- V-TACH

                      -- and last but not least .... my husband (gritting my teeth)
                      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.

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