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  • #16
    Re: I am down

    Rene', I have to thank you for posting and so honestly. There is no doubt in my mind that you are not alone, actually, I know it for a fact. It's a story not many people would be sharing. Some others will see themselves and know they are not alone. We all cut corners - finding the time or money can be and often is a real problem. Then there's the story we've all heard so often about the response we get on the office end. I know one in my family who has pretty much thrown up his hands and seems to think "just let the chips fall". I suspect if you'd been feeling horrible enough, you'd have been keeping those appts. Time just flies by. Everyone here feels very strongly about taking care of one another, it's a great family and we all want the best for everyone. Please post again and let us know how things are. Linda


    • #17
      Re: I am down

      Not wanting to take care of yourself is a sign of depression. Beta-blockers can make you depressed, as can having a serious, chronic illness --fun, no?

      Please see about getting some support around this as your family (and all of us) want you to be as healthy as you can be.

      Take care,



      • #18
        Re: I am down

        Please do not take our comments as criticism. We are all just worried about you. Please understand that I have gotten my butt kicked around this forum several times for going to China when I needed an ICD. So, please forgive me if I came down hard on you!


        • #19
          Re: I am down

          Dear everyone,

          Thank you so much for your many responses... I am planning on seeing someone. I just hate taking drugs... I pride myself on the fact that I only take enough lopressor to kill a horse once a day

          Within the last year I was in a terrible car accident with my mother, she drove off the road. We rolled 40ft and dropped 20ft and landed upside down in a creek. I swam out the back window and my mom was trapped in the car. People who saw the accident ran down the hill, flipped the car and I jumped on her and gave her CPR. She came back quickly and is fine now. Just a little too much reality for me.

          Then a month ago, my aunt, who is like my mother died of cancer. Except she died the minute her husband left and I was alone with her. Not that I don't see people pass often being a nurse, but my aunt was young (60) and we were really close. We had our diagnoses at about the same time and would call each other when we were down. I miss her a lot. My last two years have been as tragic as that.

          The good news is, I thinks have got to get better, or I hope so... I think my biggest fear is suffering to die... I see all the complications that can rise with heart disease and boy the list is long.

          You guys are great, really. I am so thankful I have so many resources to talk to.

          Ok everyone, poor Rene... Sweet dear, don't let everyone get you down and don't be sorry you posted. Your post meant a lot to me. Everyone means well. It is so scary when you sit there at the doctor's office waiting for the results of your last tests. Sometimes it feels better not to know, to just pretend this all didn't happen. but c'est la vie... what else can you say??? We were all given a wild card in the hand of life and the way we win the game is how we play our cards. I don't think you are a bad person and I do understand your feelings about not seeing your doctor. Unfortunately the picture of life is bigger than just ourselves and how we feel and you have to go to the doctor. You will feel better knowing and it will help your family too. Please feel free to contact me anytime, I am moving out your way soon to Arizona. Chat with me any time. I often have felt the same way as you do and not posted because I don't think I have anything to add. I am so glad you posted, you made my day.

          Heart nurse by day, Heart Patient by night


          • #20
            Re: I am down


            As others have mentioned, you are not alone feeling this way. I too have days when I feel depressed . I'm 50, so quite a bit older than you, but depression can happen at any age, especially with a chronic condition. I get like this when I have an AFIB episode. It still scares me and I get nervous and somewhat depressed right after. I, like yourself, think of my son (he's 10 yrs. old) and want to be around for him until I'm 80!! It's only natural to feel this way. As someone else has mentioned, it will pass. As I've said many times before, this website was my saving grace and Lisa is a godsend...we are all here for you!!!
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson


            • #21
              Re: I am down

              Hi Rene,
              I’m really, really glad you posted. I hope you realize that I and some others jumped on you because we care about you and what happens to you. With us, taking care of ourselves is not a simple matter, and to see someone go so long between tests both upsets and frightens us. We do however admire your courage and honesty in posting your situation and feelings.

              Let me tell you a little story. I currently have about twelve to fifteen different diagnoses, including such things as Familial Hyperlipidemia, Coronary Artery Disease, Diabetes, from time to time CHF, water retention problems, HCM of course, etc etc. In 2003 I was hospitalized seven times. The first time was for my fourth heart cath and stenting. Instead of being on the table for under an hour and in and out of the hospital in a day, I was on the table for six hours over two days. I wound up with pneumonia, my blood pressure was down to 70/40, and my kidney’s almost failed. (Found out that the bottom half of my right kidney doesn’t work anymore.) This was followed very shortly by passing out a few times and having a stroke. I was laid up for two and a half weeks with that one. I also had my renal arteries angioplastied and stented, and my iliac arteries the month after that. I had two episodes of HOCM in December and I was hospitalized both times. They gave me three different narcotics by IV to get my heart under control – and that was when I was finally diagnosed with HCM.

              Life for me is a constant round of doctor’s visits. At the moment I’m waiting for authorization from my insurance company to get my legs Echo’d, as there are some blockages that may need intervention (stenting in my left leg and surgical removal of the blockage in my right femoral artery.) Luckily my wife just got authorized (after previous denials) to be seen by the epilepsy clinic at a local hospital where we think she will get better care. (She got epilepsy at the age of 45.)

              My schedule for tomorrow is;
              1. Getting up in the morning and having a fasting blood test run for my endocrinologist’s appointment next week.
              2. This will be followed by brunch.
              3. Then we will run up to the x-ray lab where we will pick up reports of my chest x-ray and my wife’s wrist – which she had previously broken in a fall, and where she now has degenerative arthritis.
              4. This will be followed by a light lunch.
              5. Then it’s off to the dentist for a one hour check-up and cleaning for each of us – yes I will be pre-medicated.
              6. Then it’s back home to pick up some changes of clothing, then off to the ER as per my cardiologist’s instructions. (I have a water problem in my legs, ankles and feet that will not respond to drugs, - plus a few other symptoms.) After that, it’s anybody’s guess.

              I saw my PCP last week and she said, “We just have to get your lipids under better control,” Then she saw the three drugs I was already on for this problem and said, “There is nothing else you can take.”

              I’m finally getting my blood sugar levels under a little better control – at least to the point where I have to move more cautiously. I am taking glyburide pills for it plus, at the moment, 155 units of two different types of insulin per day.

              My kidneys, at least the parts that are still working, have a great deal of stenosis, and I dance closer and closer to needing dialysis, although I have avoided it successfully so far.

              So that’s where I’m at now. My HCM is not very far progressed, but I’m very symptomatic, and it’s always a big problem getting someone to take the symptoms seriously. I have problems walking anywhere, and just bought a scooter out of pocket after being turned down by both Medicare and the VA. The VA was insulting enough to tell me to exercise more in their denial. If I were capable of exercising I wouldn’t need the darn scooter in the first place. Ah well - - -

              Please get the echo dear heart, and give the holter another go-around. It’s amazing the curative powers that little recording devise has. I was thinking of buying one for myself. - Just think of all the money I would be able to save on drugs.


              • #22
                Re: I am down

                Good Luck Burt

                Don't let them keep you too long, but IV Lasix is great and it will make you feel better too, my lasix finally decided to work yesterday after 5 days of taking it , 160mg is alot to take in one day

                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


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