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Jharad, October 16,  2019  12:56pm EST

One year "anniversary"

One year ago this week I developed a cough that turned out, a month later, to be an early symptom of heart failure--not bronchitis, not pneumonia, not pertussis, for pity's sake. Three days after Thanksgiving, I was in ICU, in cardiogenic shock, with an EF of 15%, kidneys shot, no liver function to speak of, and non-ischemic idiopathic dystolic cardiomyopathy that made my heart look like an octopus pot...and no one knew why. 

A year later, I have an ICD implant, am about to get a cardioMEMS, but my EF is 25%, the same as when I first left the hospital, my kidneys are failing, and I'm in advanced heart failure, despite my and my doctors' best efforts.

I'm angry, and sad. Depressed and wanting all the time back that I've lost, that I fear I'm going to lose. Anniversaries are hard. Anyone else find that to be the case?

5 Replies
  • JamesPL
    JamesPL, October 16,  2019  7:56pm EST

    Anniversaries are a mixed blessing. They can always be difficult when facing what you've had to but can be celebratory when the event has some closure. Please consider speaking with a therapist. I did after my own event and found their words very supportive and to be a very positive reinforcement. They offered suggestions on moving forward which I hadn't thought of. The treatments were also covered by insurance so it's worth looking into.

    I wish you well! Please take good care.


  • Jharad
    Jharad, October 16,  2019  11:34pm EST

    Thanks, Jim. That's a good idea.

  • hammerdown
    hammerdown, October 21,  2019  11:58am EST

    Hey Jharad:  Last year, at this time during a social "Octoberfest" get together, one of the participants was in pretty bad shape.  Heart failure, after effects of a stroke, and a couple other maladies that had him nearly comatose.  Since then, he's been in cardiac rehab, and has made a major improvement.  Yeah, he's in a wheelchair and needs oxygen but he can get up and go for short walks and is lucid.  His wife has hired an aide to help her with him - he's a big guy. All in all, a profound improvement on his part. All of us should take the hint - his outlook on life is 1,000% more positive!!

  • graceann27
    graceann27, October 22,  2019  12:03am EST

    Anniversaries suck. They do, they almost never get easier and they usually make me mad too. I think that's normal. In general, you seem to be improving and that is something to celebrate (in a way). I've been dealing with this roller coaster for 6 years and some years the "anniversary" feels like it's never gonna come again but it does. There's hope.

  • jerzeycate
    jerzeycate, October 26,  2019  5:47am EST

    Anniversaries can be difficult--especially in the beginning...

    My first year it was awful. You see, my EF was 11%. Total Kidney Failure. Advanced CHF. COPD.. and the list went on and on. All because a virus had damaged the electrical system in my heart. But, I was alive. You see, I'd been told that without a transplant I had 3 months. So.. making 12 months was really good. I was pissed though. Stupid kiddie virus had taken everything from me. During the rare times I was not in the hospital there were nurses, aides, and therapists (OT, PT, Respiratory) practically living in our house. I was afraid of dying. Afraid to let my guard down for even a moment.

    When the second year's anniversary came along it was a bit better. While not eligible for a transplant they had found and implanted an experimental CRT-D. But, while my EF had improved a bit (30%) I'd wound up in Sudden Cardiac Arrest, was resuscitated 5 times, and had needed an ablation to be able to live outside of the ICU. I still spent most of my time in the hospital. Oh, and I'd had 2 mini Strokes because of Afib. I was angry. I had a bad case of the "Why Me's" While others talked of celebrating the anniversary I was just waiting for the next shoe to drop.

    When the 3rd rolled around things were a bit better. My EF was up to 45%. My BNP had gone down from over 5000 to under 50. COPD was better. Kidneys were functioning. There had been no further SCA. While I'd had a Stroke I had worked hard with the wonderful therapists who came to our home every day and recovered. And the new arrhythmias (ones that had disappeared after ablation but returned about a year later) were under control with medications. While I was still sad, I'd begun to think that maybe, just maybe I was going to find my way out of this mess. The staff that was in our home when I was not in the hospital became like family. They worked hard, alongside my husband and I, to keep me as healthy as possible

    The 4th Anniversary was when things began to really lookup. Though I still spent a great deal of time in the hospital it was less time than in the previous 3 years. My kidney function had returned to normal. CHF remained under control with medications. Signs of COPD were gone. I'd developed GI issues that were again--"secondary to heart dysfunction" but I was hopefully they could be addressed. I was busy. I'd begun helping other patients find information, skills, and support for dealing with their cardiac issues. IT started to feel like I was alive again. I went from doing everything I could because I was afraid of dying to doing everything I could because I wanted to live. There is a big difference.

    The 5th Anniversary was monumental... CHF still in remission (BNP had remained at 49). Kidneys returned to normal function with no residual effects. COPD gone. Liver function returned to normal. I actually spent more time at home that year than in the hospital. Oh, and my EF was at 65%. I was thrilled...But, I could see the toll that my illness had taken on my husband. He'd grown sullen and a bit controlling. But who would blame him after the 5 years we'd been through.

    6th Anniversary I was too busy to notice. My cardiac problems and the issues they had spawned in the rest of my body were either under control or in remission. I was finally given the okay to exercise a bit. I could even get into the pool almost every day. My house, which when I'd been out of the hospital in the 5 years prior had been a hub of Nurses, aides, and various therapists was quiet once more. There was an occasion period with a nurse and PT--but otherwise, the need for homecare was gone. While I had some ongoing problems, my EF remained at 65%, BNP at under 50. My doctors are confident about my ongoing recovery.

    I am nearing the 7th Anniversary of when my heart went off the reservation. Having been given a 3-month Expiration Data it is truly a Miracle that I am even alive. Yesterday I walked about a quarter of a mile. Pretty good for an old lady who, just 7 years ago was unable to walk to the bathroom without assistance. I was in the hospital for a week a few months ago. The GI issues I'd developed secondary to the cardiac issues flared up leadning to all kinds of cardiac symptoms. The staff at the hospital, who had become like family to me during these last years, was sad I was sick but were thrilled to see me. I'd had about a month of PT to get me back on my feet.

    I guess the point I'd like to make here is that anniversaries help us to Have Hope. Have Faith. To believe that Miracles happen. 

    Recovery, for most cardiac patients, is not a sprint. It is a complicated marathon.complete with grueling workouts, sacrifices, and the need for assistance.

    My EF remains at 65%. BNP under 50. CHF remains in remission. Arrhythmias remain under control with medications  Liver function is normal. Kidney function is normal. GI problems in remission. I have lost 90 pounds and have a much healthier diet and lifestyle than I did prior to becoming ill. I have begun to exercise and am becoming stronger by the day. Oh...and there is Big News---ALL SIGNS OF DCM are gone.  Who would have thunk it possible?  I shout to the world about the miracles of medicine. About life in recovery.

    It's been nearly 7 years since my heart went off the reservation and I was told that without an immediate transplant "she has about 3 months."  I breathe easier these days.

    It's been nearly 7 years since my husband was advised that the best thing would be to "Take her home. Make her comfortable. Get her affairs in order."  I worked hard to get better. I work harder to stay better.

    It's been almost 7 years... I have so much to be grateful for. I think that when this anniversary rolls around we will have a  Real Celebration. 

    It's A Great Day to be Alive...


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