The Next Chapter: Living With Heart Failure

Right off the bat, for those who don’t know, I came home from the hospital on Sunday after 12 long days away from my family. A large percentage of my time away was waiting. Waiting for medication to kick in, waiting for procedures to happen and waiting for those magic words, you are getting discharged.

I am surprised I did not swim in my own puddles of joy. Inside me somewhere is a huge release of tears that I have no control over.

Hopefully it does not release on the TTC but that’s what the Dufferin bus will do to a person on a good day. I will never judge those people on Survivor again who lose it when they see their family after a few weeks. It was a mental game for sure. To avoid ever doing that again, I have a few new “musts” to follow in order to make life last as long as possible.

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Just to catch you up from my first post on this journey, I had the following procedures and tests to get me here.

  • Several electrocardiogram of “ECG” or “EKG” procedures
  • One electrical cardioversion or the shock
  • Two echocardiogram or “ECHO” procedures
  • One coronary angiogram
  • One cardiac MRI
  • Around the clock monitoring with a telemetry monitor stuck to my chest. I even had a purse for it
  • So many blood checks, weight checks and lung checks.

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I don’t want to sugar coat it all. While I can say I am fine, this is a serious thing that needs to be treated, monitored and taken seriously.

The diagnosis is Heart Failure. While this sounds super scary, it refers to part of the heart failing, not complete shutdown.

It’s something that has no current cure, so this is with me for the rest of my days. Which will be many. You are all stuck with me. I read all the research papers and stats out there and they seriously brought me so far down, it was hard to dig out.

Here is the positive outlook, which took me some days to get to.

I have access to the best medicine, the best heart specialists in Canada, and decades of life compared to most who are diagnosed with HF. I have the time to do everything to treat and rehab the heart. It may never be like brand new, but it will keep me living a normal life. Can’t ask for more than that.

In my mind, it feels as though it was caught early enough that further damage will be put on hold. The exact cause? They are still trying to figure that out. But since all this has happened I have learned my Mum also has a heart arrhythmia. So while not great, it’s far easier to accept the possibility of genetics than something i was doing wrong so to speak.

Now on that topic. The big changes in my life are all to do with what goes in my body for the forseeable future.

It’s pretty simple actually.

– A liquid limit of 1500-2000 mls/day (think a 2L pop bottle) That’s everything. Tea, juice, water, ice cream etc.
– A sodium limit of 2300 mls/day. Think a teaspoon of salt. That’s not a lot. I calculated roughly that I was eating 4000-5000 mls/day before.
– No alcohol. None.

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That’s the new way of life. Fortunately I love tracking numbers and I love building routines. I was made for this challenge. I don’t think I have gone over my limits since I was told. The liquid one is the hardest for me but I will do it. All I need is a good supply of notebooks and a measuring cup.

Since home, we have cooked a lot of meals with low salt. They make low sodium chips. They even make a lot of my fave booze drinks without the booze.

Here is a key part you should really listen to. I am not calling the sodium reduction a diet. It’s not. We are all supposed to eat 2300 mls or under per day. All of us. It’s not a diet.

Why you ask?

Sodium moves into your body and is like a squatter. It doesn’t pay rent and stays far too long. Salt just builds up in your system and then sucks up all the healthy water you drink and won’t let go of it. Water retention or as I learned, my belly, is bad for the heart. Basically it just makes the heart overwork to move liquid around your body. So imagine an already weak heart having to do all that extra work. Yep, in this case water was not my friend.

So now I have lost almost 20 lbs of water weight, and not adding in too much salt anymore, the heart can get stronger and work at the capacity it should. Is the liquid and salt restriction forever? Guess we will have to see.

I don’t want to be that guy, but I seriously recommend looking at your own sodium intake and see where you can cut back.

Also, let’s not forget about the magic of medicine. I am currently on seven different pills that I take with breakfast and dinner. I even have one of those old person pill boxes to measure them out. I started with green.

Add it all up and I am home, getting better and going back to normal life. I am still covered in squares from all the stickers on my body and I have some serious bruises from the coronary angiogram. But I am home. I am home. I am home.

It took a few days but I think the rest of the family let the tension leave their bodies. Katie did so much while I was away. Really makes you appreciate the person you chose to spend life with.

I also want to thank everyone who helped out in their own way. Our neighbours for entertaining the boys and keeping things normal, to D and T for visiting me in the hospital and for all the other reach outs on social. My coworkers were hanging on every morning email and sent me funny videos and articles to read. I did manage to do a lot of work in the hospital just to keep my sanity. The Wi Fi was amazing. So thanks to my team at Maru/Matchbox for allowing me to control my work and stress. No worries there. I wish everyone could have that support from their job when times are tough. It’s pretty amazing how a simple “how are you?” can boost spirits.

I never went to the dark places that would be easy to go to. I did catch myself being a little down, but like I said, I have so much to live for and such a long life ahead. So of course I am going to do whatever it takes. Of course I am taking this serious. I saw so many examples of people who clearly are not. But to each their own I guess. As the doctors kept saying, we can’t do everything for you to get better.

Heart Failure is not the end of enjoying life. For those in my shoes at such a young age, you just have to trust the medicine, and do your part to control what goes in your body. Maybe one day as medicine advances, there will be a cure for fully recovered heart. Who knows. It’s all very exciting to think about.

Am I upset about no more ice-cold beers? Damn right. But it’s not worth what you potentially give up on the grander scale.

I feel really good. I have even stopped worrying about every little flutter and weird feeling. That will get better with time.

The boys have really gotten into reading labels and telling me what I can’t eat. Everyone is going to benefit from this change. If it truly is genetic, we might as well keep our boys as healthy as possible knowing what I now know.

So what’s next?

I have some appointments set. I even have a sleep test in September to rule out sleep apnea.

Amazing what my birthday was like in 2018. I was planning on making a few changes, but nobody saw this coming.

Thanks to everyone at Toronto General. I know you won’t read this because I have seen first hand how busy you are, but I will still say thanks.

Stay tuned for updates on the new life and how I am doing. I feel like I have come out the other side and ready to take on the new challenges.

Michael Cusden
Michael is the creator of Like A Dad and uses his daily experiences of being a parent and a marketing dude as his content. Always looking to connect with other parents and bloggers.