If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

hcm petpeeves

Collapse

About the Author

Collapse

jujemendoza2002 Find out more about jujemendoza2002
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • hcm petpeeves

    I know that I have like petpeeves about hcm, somethings bothers me, like I will get these heart rythms or flutters and when that happens I feel weird but not really any pain. Ok, here's the Petpeeve part that bugs me, I have noticed like sometimes in the car or truck or when there is alot of vibration, like from a very bumpy road it would make me feel more worst than before, even on a horse that I road once, I feel shaky like that. Does anyone esle have any hcm petpeeves, the aggravation?
    Jen

  • #2
    Re: hcm petpeeves

    not knowing if i'm having a heart attack or just so stressed that i'm having horrible chest pains. that would be my biggest pet peeve.

    that and taking medication that makes me just as tired as being in afib does. hello? irony calling!

    S

    Comment


    • #3
      Re: hcm petpeeves

      Yah I know, it sucks when the meds make a person feel just as a bad if not worse. Speaking of stress I hate the stress of worring if I forgot to take my meds. I have the atrail fib too, there's nothing worse than that to me, even more so when my heart races.
      Jen

      Comment


      • #4
        Re: hcm petpeeves

        Is taking this med when it is what they had me on before the surgery and it didn't work then, and the fact when they did my surgery they messed up my top lead to my ICD and now it has to be fixed and but i do thank God that i'm still alive and able to help my son through this

        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


        • #5
          Re: hcm petpeeves

          My pet peeve today has been the pain in my chest. I woke up with it and going outside only made it worse. Today the low temperature was 78 degrees, and the high was 114. I took my Shirley to the local supermarket, and when I went to get out of the car I got dizzy. So there I was, sitting in the seat sideways with my feet on the ground, and this real nice guy comes over and offers to get a power cart from the supermarket and bring it to me. I said no thanks. It took about five minutes, but I finally did make it into the store, and when the time came, I rode the power cart back to the car and a box-boy retrieved it.

          I see the cardiologist tomorrow, and I do have a tale to tell. I don’t think there is anything more he can do for me, but we’ll see. I started the ball rolling to try and get a power scooter from the VA – if not; I’ll have to foot the bill myself.

          Anyhow, the shortness of breath, the chest pains, the dizzy spells, and the pains in my heart and my inability to walk more then a few feet outdoors, and not much further indoors are my pet peeves.
          Burt

          Comment


          • #6
            Re: hcm petpeeves

            I don't have one but a whole bag full of pet peeves. Not being able to walk up stairs without great effort, not being able to bend over without feeling like passing out, being so darned sensitive to the heat just to name a few. The worst of all though are the arrythmias, and an uncertain future for me and my kids. But what other option do I have....the alternative is not so great.

            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


            • #7
              Re: hcm petpeeves

              Well, I went to see my cardiologist today, and found out he left the practice yesterday, and will be on vacation until the twenty-sixth. I will then have to find out where he will relocate, have my PCP request another referral from my insurance company (if they will deal with his new group and the new group will accept assignment), and then call for an appointment.

              In the meantime I had to deal with Dr. Idiot. His entire exam consisted of listening to my heart for about thirty seconds. I told him of my litany of current complaints – and he took it like a man. Didn’t do anything, but he did listen. This is the clown that looked at my echo from March, wrote his impressions and destroyed the details. Not even the hospital has a copy.

              He did say I was on a lot of medications. I told him I was now on 120 to 135 units of Insulin a day when he commented that my Glycohemoglobin A1c was very high. (I supplied a copy of the test results my endocrinologist had requested a week prior.) He asked if I use Nitroglycerin, and I told him it was contra-indicated for HCM. I do carry pills in the event of a full blown attack, but I haven’t used them. (I have arterial sclerotic heart disease also.)

              I then started asking him about his knowledge of HCM, becoming suspicious when I had to tell him what HCM stood for. He said, “We do see a few HCM patients” – If true, that’s the practice/group, not him personally. Then to show just how much he knew about HCM he told me the startling fact that some people are born with it, while others contract HCM later in life from a number of other causes, - such as high blood pressure. (Actually, he did convey ‘exactly’ how much he knew about this genetic disorder.)

              So now I am faced with the hassle of relocating to my old cardiologist’s new group, or trying to find another diamond in a rather large pile of manure.

              End of rant. Love to all,
              Burt

              Comment


              • #8
                Re: hcm petpeeves

                My pet peeve is the unpredictability of my HCM. It has seemed to be much better for the past six months (I'm being treated for Fabry Disease which is most likely the genetic cause of my HCM) and I've been walking for exercise almost as if I were normal. I feel much stronger. Then today the near fainting symptoms came back. Another odd thing is that although I had been feeling better until today, a recent echocardiogram showed no difference in heart structure or function. Go figure!

                (Just to reassure all you nice caring types, I will call the doctor if this sudden reversion doesn't let up very soon.)

                Sue

                Comment


                • #9
                  Re: hcm petpeeves

                  Well Folks,
                  The Lord works in mysterious way, his wonders to perform. Or, to put it another way, If you beat your head against a wall long enough and hard enough - - - the wall falls down.

                  My wife is an epileptic. She was being seen by a neurologist since we moved here three years ago. She had a seizure in a department store, and banged her head. Our PCP ordered a CT scan, and we thought it would be a good idea if the neurologist took a look at it. We found out that he is so afraid of law suits, if Shirley falls down outside the home he will not see or treat her, or even discuss the incident. So much for him.

                  The next tryout prescribed a new drug for Shirley to try. It requires prior authorization from the insurance company. We called him twice to no effect. The pharmacist even faxed him a form to fill out, which he ignored. Two and a half weeks later, in response to a strongly worded email, he finally got the Prior Authorization. When she got the drug she had a bad reaction to it.

                  On our last appointment (number 2) we were kept waiting an hour and a half for him, after fighting traffic an hour to get there. Three other patients came in after us and were seen before us. I voiced my displeasure to the doctor. He put Shirley back on her old medicine, and to avoid us having to waste time, made her next appointment in six months.

                  Last Saturday we went to a five hour symposium on epilepsy at a relatively near-by hospital. They are opening an epilepsy clinic and it sounded promising, so Shirley requested a referral to that clinic. It came back approved today. I called the clinic and asked for an appointment for Shirley. Seems everybody is king of their own territory. They first have to check with the insurance company to see if they really meant to approve the referral. – I guess it will happen, with just one more smash at the wall.

                  Next – remember my moaning about my cardiologist quitting the practice he was in the day before I was supposed to see him? Well today I heard from my PCP’s nurse that he is opening his own practice right across the hall from my PCP. He will be even closer to me then before. All I have to do now is wait until the 26th when he opens his new practice, find out if he will still accept assignments from my insurance company, get the ins. Co. to approve it, and then issue me a new referral, and then I will be able to go see him again.
                  Seems like you don’t always loose – you just have to pound away until you win. As Mahatma Gandhi once said, “First they beat me, then they ridiculed me, then they jailed me, then they laughed at me, - - - then I won.”

                  Life is good.
                  Burt

                  Comment


                  • #10
                    Re: hcm petpeeves

                    Oh Burt-
                    It seems you either make me LAUGH or feel lucky! So sorry about the Cardiologist story, I admire your patience! I've been seeing the same Cardio for over 15 years (date of my diagnosis), he's in a great Practice & is very knowledgeable about HCM- if he doesn't know something, he calls around/researches it.
                    That was very insightful, the new Cardio-I never realized I "got" HCM from my high blood pressure, I always thought it was something I ate! Well, now I know!
                    Keep Cool
                    RONNIE

                    Comment


                    • #11
                      Re: hcm petpeeves

                      Burton, That is great that it worked out that you still get to see your cardiologist at his new practice and that it worked out to even be closer. It only sucks that you've had to deal with so much stress, I hope your wife feels better too, maybe now you can relax for a little while,huh? take care!
                      Jen

                      Comment


                      • #12
                        Re: hcm petpeeves

                        Wow Burt

                        Now that was a story, maybe next week i will have a story i have 3 doctors appts so cross your fingers for me. i hope your Shirley is doing ok and how have you been feeling?

                        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


                        • #13
                          Re: hcm petpeeves

                          Hi everyone.

                          Burt, I enjoy your posts and always read them with great interest.

                          I have been a member of the HCMA for a while, but don't post much. Just want you all to know that I watch your posts when I can, I keep up with you in my own quiet way.

                          Anyway, funny this post about pet peeves about HCM came on the website. I was just talking to my husband about them a couple weeks ago.

                          We were on a camping vacation for 12 days. We live in Colorado, and our long camping vacations are something we've done for a long time. We are avid motorcycle riders (dirt bikes), love to fish, hike, camp, and just enjoy our beautiful mountains. But I have noticed in the last 4 or 5 years that it is getting harder and harder for me to do the things I love to do.

                          Those would be my pet peeves:

                          I hate that I want to go fishing, but the walking/hiking may be too much.

                          I hate that when we're out dirtbiking, I get tired too easily and sometimes the rough stuff is just too physically demanding for me. Sometimes I just don't have it in me.

                          I hate that I can't hike much anymore. At 10 or 12,000 feet, it's just too much.

                          I hate the headrush that comes with bending over and trying to stand up again. Every time.

                          I hate that so many things that I used to do are so hard now. Just everything... Housework, gardening, walking. It sucks!

                          I also hate having to ask for help, or admit that things are hard. So many people just don't get it. I don't talk about my HCM a lot, so people seem to forget that it is a real factor in my life.

                          You guys know. Many of you are right there with me.

                          It's so nice to have this site to come to and see that I am not alone, and that there are people out there who understand.

                          Comment


                          • #14
                            Re: hcm petpeeves

                            Debbie

                            When i read your post is was as if you were talking about me, i feel this way allthe time and i have a hard time dealing with it , i have always been an active person for the past i would say 10 years now i have pushed myself to do and as the years go by it's getting harder and harder, you take care and you are definetly not alone

                            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


                            • #15
                              Re: hcm petpeeves

                              Dear Debbie,

                              It is tough, but you have a double-sided path before you.

                              1. get the best care and stay in the best shape possible (harder 'en heck with HCM, but no effort, no progress)

                              2. the past is past. you are who you are today, not yesterday. everyone slows down, some of just slow down faster. think about how much time you have to appreciate all that is around when you slow down a bit and investigate all you see on a hike instead of plowing through it.

                              Reframe your perspective a bit, accept a bit, keep pushing a bit, and you should find a fine place to be---living life!!!

                              take care,

                              Sarah

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X