Karen 's Story

About Me (In My Own Words)

Hi, I'm Karen, I'm 51and this is my story.

I was born with a heart defect of a hole and weak mitral valve.

I have had numerous annoyances such a irregular heart rhythms since childhood which resulted in a series of strokes at 30 years of age.

I was put on warfarin in my stroke recovery and my heart health improved from that time to become fairly stable until Nov 5 2019 when my cordae ruptured from my heart wall while watching TV before bed in a completely relaxed state. I was doing nothing to bring this on when this happened.

It resulted in a very strange feeling when it happened of what felt like a pop, woosh, slight sudden nausea which ended quickly. I thought hmm odd but thought nothing more of it and went to sleep.

I got up the next day feeling weak but went to work for the rest of the week. Feeling worse daily. I thought however that I just had a bad cold as to why I was suddenly feeling so poorly.

Saturday it was not tolerable as I was having such trouble breathing. I went into the emergency of a hospital near me that was set up by the walk in clinic I attended.

I was in need of significant amounts of oxygen at this point. I was given a chest xray which showed fluid built up and a CT scan which showed an enlarged heart. It was unknown the true cause at this point as it was thought that I may have had influenza.

I was admitted to an observation ward with oxygen and doses of anti viral drugs and antibiotics.

My assigned physician would not investigate any heart issues convinced I had simply a lung issue. I was told the CT scan is unreliable for heart size and that it commonly exaggerates the size of the heart.

A lung specialist was assigned who was not convinced a heart issue was not the cause. He then brought in a second lung specialist who also agreed that it was likely a heart issue. Keep in mind my full medical history is available to the first doctor who refused to order a simple echo when I suggested it be ordered and compared to the one my cardiologist did in August a year prior if he thought the CT was faulty.

The next day (day 5 in hospital) I saw a cardiologist who after listening to my heart knew right away what he suspected the issue to be.

The echo was ordered for the next day and what he suspected was in fact what had happened. Almost all of the valve had broken off and the regurgitation was severe. This in turn caused congestive heart failure with my lungs and organs suffering.

I was transferred to the next hospital on the following day to await a surgical work up and determination on what to do to fix this. Surgery was set to the 21st of November.

In the mean time fluid reduction was the aim. As were further diagnostic tests.
Oxygen continued as I could not function without it.

Surgery to replace the valve, fix the hole, and do an atrial appendectomy to reduce the stroke risk as I have a genetic blood clotting disorder to add to this mess.

I was in ICU about 18 hours and unhooked from all drains about 9 hours post surgery. I only had the oxygen and heart wires remaining when I was taken up to the cardiac recovery ward.

From there it was a struggle to get my blood thinned. It resulted in a bleed before the heparin was unhooked. I was also on warfarin, asprin, and advil as Tylenol did nothing for the pain.

My heart for the most part was functioning OK. Not too fast, not too slow and only mildly irregular from time to time while in hospital.

I was however extremely sleep deprived as had been by this point 3 weeks in hospital in a very busy and noisy ward.

I was allowed to go home 7 days post surgery as my inr was finally OK.

Since being home I have been on numerous drugs. I have been on a constant struggle with my INR bouncing all over the place. My heart function when discharged was 35 percent. Which is very poor. I was not taking any pain meds at all 3 days after coming home.

Rest was ordered with only walking several times per day fo 6 weeks.

Since being home my days have been a complete roller coaster. I am completely at a loss as how to deal with this. Some days I feel progress and others like today, my heart is not in fibrulation, but has continual rhythm irregularities.

I also have muscle spasms that make it hard to breathe. My next issue is that I can't stop coughing for days, then I get an OK day. With the next day after an OK day going back to the wheezing and coughing.

I can't talk when this happens or talk on the phone. It is a terrible tickle type feeling. The coughing is just bringing up very minor amounts of clear somewhat sticky phlegm.

I am on two medications that may be a cause of this.... But sadly have no way to know as the appointments you are given are 6-8 weeks post surgery.

It is an unknown what is a normal recovery issue and what might be something that needs medical intervention as the only recourse for assistance is trying to see your GP who normally may have a multiple week wait list, or an emergency room which is a good 3-12 hour wait before anyone sees you. So for instance if your heart is not in a fib but is completely irregular at times to causing light headedness. You are left feeling lost and worried for something that might only be a common issue.

At this point my morale is low, I feel lost and scared that this is not going in the right direction.

I am still unable to lay down as I feel I can't breathe when doing so. As a result have very limited sleep of only a few hours sleep in an easy chair daily. It's not enough even with resting through the day.

Any encouragement would be hugely appreciated at this juncture. I'm normally a very active person and sitting around all day is a struggle.

Thanks in advance for any advice that can be sent my way.

More Info About Me & My Heart

More About Me

• 
  I am from:
  Saskatoon, Canada
• 
  My surgery date is:
  November 21, 2019
• 
  I was diagnosed with:
  Mitral Regurgitation
  Pulmonary Regurgitation
  
• 
  My surgery was:
  Mitral Valve Replacement
  
• 
  My surgeon is:
  Dr. Dr. Abbas Khani-Hanjani
• 
  My hospital is:
  Saskatoon Royal University Hospital