Heather's Success in Heart Failure

I was 49 years old, at the gym 2-3 times a week and doing Pilates once a week... I was active and working...

I’m not honestly sure when my symptoms started, but the key symptoms were always diagnosed as allergy related.  The symptoms that I now no longer have are as follows:

  • Inability to walk up an incline or do medium level cardio at the gym
  • Pain in the right side of my neck
  • Losing my voice at the drop of the hat
  • Trouble sleeping and the new normal became functioning on 2.5 – 4 hours sleep a night
  • Additional trouble sleeping due to a persistent cough, where I couldn’t breathe
  • Following coughing which occurred both day and night I would dry vomit with a foam being the only output

The Sunday prior to a GP appointment, I had the coughing and breathing episode, where I was about to be taken to the ER due to a very scary episode of not being able to breathe.  I was resolute that I didn’t want to go to the ER, so following multiple doses of the Ventolin inhaler I was finally able to breathe. Note, I’ve not, nor never had asthma.

The GP appointment did multiple tests, the most significant was a chest x-ray, which found that I had a dilated heart.  That triggered an echocardiogram which resulted in my first sequence of drugs.

We went on a journey where over 4 months my ejection fraction marginally improved through changes in drug regimens, but I was still considered high risk on the rankings i.e. I was still under 30%.  My cardiologist referred me at this point to Dr Pathak for a CRT-D device.

I was diagnosed with severe heart failure May 2019 and I had the device implanted in October 2019.  As of my last echocardiogram in February 2020, my ejection fraction was in the 40% range, which significantly reduced my risk of stroke and/or cardiac arrest.

Dr Pathak and the team at Canberra Heart Rhythm Center were wonderful.  They were accessible via phone and email, along with being friendly and flexible for appointments. The team work hard and are solid.  Dr Pathak is kind, empathetic and accessible as well.  Even with my issues that needed to be resolved and my dislike of hospitals, I never doubted the process I went through.

The key takeaways to this process if I can impart wisdom are:

  • Own your body and your symptoms - don’t just take 1 GP’s word for a set of symptoms you are dealing with, especially if they are part of the same practice with access to the same notes. I saw 5 GP’s – number was driven both by proximity to my job and number of Dr’s in a practice.
  • Request the tests or the referrals, not that I needed to, but change GPs if you don’t get what you want. 
  • Either get personal patient reviews or check cardiologist reviews on the web
  • You have to be comfortable with your GP and Cardiologist – if not, change them!
  • If drugs aren’t answering or causing improvement, ask what options you have

And finally – don’t forget to remember the family / team you have around you that helps you through this process as they are pretty special!

All the best wishes for your journey!

 

- Heather, 2020.