My days

Gradually feeling better. The heart procedure had limited success. Things are better in that my resting heart rate has reduced from about 130 beats per minute to in the area of 105. Obviously that is an improvement but physically I don’t feel any different.
Doctors are trying to figure out what or if any further options are left. All of this has nothing to do with the heart failure and will not affect quantity of life only hopefully providing a better quality of life.
What is my quality of life? Hard question to answer as it depends on the day and even time of day. Have had to give my head a bit of a shake to remind myself that to a large degree it is my own thinking and attitude that determine the quality of my day. Doing that has helped me move from the poor me, this sucks. To OK, this is not the way I would like my life to be be but it is what it is. There is nothing I can do about it so accept it for what it is and get on with living life. Look for the good things and I realize life is good.
I said it can depend on the time of day. For a couple of hours first thing in the morning other than feeling worn out tired, I feel pretty good. No pain no discomfort, I feel good. As the morning progresses I feel more and more tired.
I have the luxury of being able to take an afternoon nap and I most certainly take advantage of that.
Wake up from my nap and generally feel light headed, dizzy with on and off moderate chest pain. Balance is usually off, especially when getting up from a sitting or from laying down. All relates to blood pressure. They checked that in the hospital. They took my blood pressure laying down, then had me stand up. They immediate took it again and the top number had dropped 22 points. I have learned to just stand up very slowly while holding on to something or I will fall. I now use a cane when walking for balance purposes.
Then evening comes. Right around supper time the chest starts to pound. Meaning I can feel it beating, no big deal. That is but the start of my typical evening.
That marks the beginning of what I call my “episodes”. Clinic has asked me to record what the heart is doing so out comes the blood pressure machine.
Typically an “episode” lasts 20/30 minutes but some have gone as long as 3 hours. Every evening can be different in that I may only have a couple of the shorter ones but have had as many as 6 in an evening.
During these “episodes”, it starts with my heart pounding so hard it feels like it wants to come flying out of my chest and the beat becomes very irregular and starts beating faster and faster. This then affects the blood pressure, which starts to drop. Hey, I am memory guy and to lazy to go and get the book where Vi records all the numbers. I do remember at one point blood pressure was 58 over something with my heart rate in the 170’s or 180’s. Now trust me on this you don’t feel to sparky at that time. I have learned to just lay down quietly and it will pass and pass it does. My energy levels are already low but this really drains any reserves I have.
Now my evenings have been like this for years but to a much lesser degree. By supper time I have used up my energy reserves for the day and I want nothing more than to just lay down. It has affected my appetite, it is way down. The mere though of anything greasy or spicy. Silver lining here, my appetite is way down, I have lost a lot of my excess weight like 45 pounds in the last 8 months. At the clinic they check and record my weight with each visit. They checked their records from 8 months ago and that is what the scale says.
This latest procedure has changed something with my episodes. Prior to, an episode was the heart rate taking off but the blood pressure also going up. Now the heart rate goes up but blood pressure goes down.
In the past I did my best to minimize or even hide the discomfort I was feeling. Have company over or what ever, I put on my best face and declare myself to be fine and hang in there as best I could. It around supper time and energy is just gone, I have to lay down. Go to the bedroom, close the door and try to deal with what ever is going on at the time.
It occurs to me some may even think I am antisocial or something as I decline to go out with the family group for evening meals. That is not the case at all. I am just exhausted, if my heart isn’t already pounding, I know it is hust a matter of time and the mere thought of food turns my stomach. I never want anyone to miss out on anything so I just encourage them all to go.
Things are now different. I am no longer able to hide the episodes. The low blood pressure has me so light headed I am staggering and falling, harder to hide that.
As usual more to say but have worn myself out


5 Responses to My days

  1. M T McGuire says:

    Wow that sounds hard but you are so right in what you say that you have to accept your situation, be honest about it to yourself, and others, and then live as fully as you can. I hugely admire the way that you always live with your condition rather than suffer from it. You are in my thought’s and prayers. If you’re anything like my dad it varies a bit and you have ‘good days’ and ‘bad days’. May all your days be ‘good’.

    Lots of love


    Thank you my dear friend. I do have my days. Some good and others not quite as good. My best to your father.

  2. Noel says:

    Glad to hear you are feeling better!

    Thank you Noel, nice to hear from you, it has been a while.

  3. hilarymb says:

    Hi Bill – it sounds difficult – and I certainly hope they can find something to ease you … take care and with thoughts – Hilary

    Thank you my friend

  4. Mel says:

    *huge hugs* You said a lot, even if you thought you were just rambling. Some people get into drama and embellish their truths, for whatever reason. Others understate the truth, trying to control how others will react/perceive things. Every once in a while, you come across someone who can just say what’s true without the spit and polish. Knowing how you like to frame things so Vi won’t be frightened, I’d say we got some truth and there’s many more things attached to it than you put out there, though I’ve NO doubt that what you gave us……happens. Day after day, night after night.
    So, I’ll magnify the situation and believe that there’s a lot that comes with ‘tired’….weary, exhausted to the point that everything is a concerted effort, even the effort it takes to go to bed.
    Vi has every reason to want to haul you off when one of those episodes happens. You know your body as it was. I’m not sure you nor she, nor any of us know your body as it is today. It has to be scary for the both of you. This has been escalating and out of control for some time. That fact alone would frighten anyone.

    True, it is what it is. But from this chair, reading your description was frightening to me….and I’m watching from the sidelines. Quality of life means, to me, that I seize every moment I can and make good on it. That’s difficult to do on a good day. I can imagine how difficult that is to do when you’re exhausted, wanting to just rest but you can’t cuz your heart it trying to drum its way out of your chest.
    It’s right up there with being physically, emotionally and spiritually spent, wanting to drag your destroyed body to bed, but you can’t move from the toilet you’re hugging, wretching uncontrollably from the chemo therapy drugs they’ve given you. I can ‘feel’ that ‘spent’ from what you shared. It’s familiar, because I’ve felt that. But it’s frightening because it’s YOU.
    Trying to choose your attitude in that moment…..been there, couldn’t do it, so you’re not alone. Tough to do when it’s all you can do to crawl to bed. I don’t imagine it’s any easier to do with your heart racing uncontrollably and your chest feeling like it’s about to explode. I’m saying this because I need you to know that the struggle is okay. Every feeling you have, every emotion you’re experiencing is okay.
    I don’t want you to think you need to be somewhere you’re not, emotionally or spiritually. You can be where you are–depressed, angry, scared, overwhelmed, confused, weary–those can happen side by side with joyful, grateful, happy and peaceful. You don’t have to be anywhere except where you are, yaknow?
    Right…..That’s my soapbox moment for today. Just wanting you to remember –what you think, what you feel, what you need for you…..matters. You matter. We all want you to make the best choices for you. You don’t have the energy to squander doing anything besides that, yaknow what I mean?
    …k…LOL. I’m picking up my soapbox and moving on now!! 😉 Love ya, Bill!!

    Mel, I thank you for your supportive, reassuring and caring message. I am so sorry you had to go through all you did in your battle with cancer. Look at you girl you fought the good fight and won.
    Cancer is such a terrible disease and I feel my condition pales to that of a cancer patient. Through your past experience you do get it, what I am trying to say about that exhaustion, the emotional ups and downs, the feeling of helplessness and the struggle to focus on the positive.
    You are right, I do try to shield Vi from what I see as needless worry. When I am experiencing one of my episodes, life is difficult. But, I have had enough of them in this past while that I know most likely it will only last about 30 minutes or so. By the time we could get to the hospital it would likely either be over entirely or at least winding down to the level there is nothing they will do. Heart Failure Clinic is aware of my situation and have me on their urgent list for tests and possibly 2 further procedures. Now it is just a matter of awaiting their decision and getting to the top of the urgent list.
    I know there is a life lesson for me here, I am not good at waiting. I just don’t like having things hanging over my head. I am more a let’s face it head on and get it over with.
    Mel, thank you

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