Rehab Life – the next chapter

I no longer have to pace myself – I have a machine to do it for me! My heart was not listening to my brain so it’s under new management.

Last fall, after my epic fun road trip with the kids I started to feel down and thought that my PTDS was flaring because I was dealing with pressure from my long-term disability insurance company to participate in an aggressive physical and psychological therapy program with hopes of getting me back to work.

I mean – for sure it was flaring and on top of that I was forced into this program.  I could have declined, of course, but then I may have lost my benefits and my job security from work.

I made it through five of the eight week program – each week telling my therapist and insurance company that it was too much, but still attending and participating.  At the end of my sessions of week 5, I felt awful – burned out, tired out and in too much pain to sleep.

I went to bed, took Tylenol, used hot water bottles, ice, and slept.  I told Hubs: “Something is wrong with me.”  He wanted me to go get checked out, but I thought I was just worn out.  I was – but more than I knew.

I was still feeling awful for the next few days and when I went to a regularly scheduled appointment  with my cardiologist.   What was supposed to be the same old, same old annual visit turned into  so much more.

A routine test showed that I had heart block which means that the electrical system in my heart was not working properly.  They put me on a treadmill to see how serious it was and how long I could wait for a pacemaker (the only treatment option).  Two minutes on the treadmill and the answer was that I needed a pacemaker that day – I wasn’t leaving the hospital. (Third degree heart block and polymorphic v-tach.)

Poor Hubs, one more distress call from me that he’ll probably hear over and over in his head.  “What happened?  Why now?” he asked.  We still don’t know the answer to that.  Each hour I was getting weaker and my heart function was declining.

my accomodation

I got checked in (aka admitted) to my room – a palatial suite with a mountain view! Called and texted my family and friends.  The funny thing was nurses kept coming in and asking where the patient was.  I was in my street clothes and looked so young to them – they thought I was there with my mother.  Really I put the hospital gown on just to keep things straight.

Hubs and kids came by, as did Aunty and one of my besties KSO and her mom.  She missed out on the coma action and her mom said wild horses were not keeping her away from me this time.  I was glad to have the company so I didn’t have time to think about the state of things.  Just keep moving forward!

Victory in the post-op

Surgery went well the next morning – my side kick and previous coma attendant met me in the pre-op area – Hubs stayed home with the kids who needed his comfort.  I had my girl and we were doing our comedy shtick asking for a hot pink pacemaker, trying to sneak into surgery wearing my own pyjamas, and making friends with all the staff.

Did you know that most pacemaker surgeries are done with local anaesthetic?  That’s right I was awake for the whole thing!  Got to hear more than I wanted while the surgeon guided the surgical resident through some parts.  “No don’t cut that” is not something you want to hear! I’ll spare you the details on how often the “freezing” wore off.

I had a wonderful anaesthesiologist who, as it turns out, was part of the team that put me on ECMO in 2013.  He saved my life once, so I felt so calm knowing he  was taking care of me again. We had a great pre-op chat and I knew I was in good hands.

Recovery feels like someone drilled a big whole through your shoulder to your back and left a rock behind.  I said that to my surgeon and she said it was a pretty accurate description.

proof of life

Immediately after the surgery my skin tone changed to my youthful pink – I now matched my sister again – hadn’t really noticed how bad it was until it was good again.  I also could walk and talk with full breath.

Now five weeks into my recovery I feel like going for a walk and running a few errands.  One thing a day tires me out from now.  I have hope – even though some days I feel very fragile and breakable and hubs would like to wrap me in bubble wrap.

I’m looking forward to  returning to yoga next month and getting in the pool.

resting up with my buddy

I am thankful that I live in Canada where this whole episode cost me zero dollars.  The cost of my pacemaker is about $30K USD and then add on the surgery and hospital stay.

My one regret is that I allowed myself to be bullied by the insurance company.  Before their return to work program I had adjusted to my life of reduced activity and was figuring things out – now I’ve got a pacemaker.

There is an unequal relationship between the insured and insurer – one needs the money and the other has the money.  To say no to them is difficult and scary.  I did call them from the hospital to tell them what happened and I’m hoping that from now on I will be in charge of my activity level and not them.  That is my new challenge – stand up for myself.

When you are living with an invisible disability and are a positive, happy person it often confuses people why I can’t go back to work.  Explaining and justifying my situation has become exhausting and annoying.

I came back from the brink of death in 2014 and if I didn’t go to my cardiologist in time, I would have died in my sleep.  The only person who knows my capabilities is me and I need to find someway to express that and shut down the pressure to be better.

“I have always lived life on the edge of my abilities – pushing myself as far as I can.  I am and always will be as good as I can be.”

Sidebar:  I had heart surgery as a kid and I see my cardiologist each year to make sure everything is still ticking as it should be.  My heart has been stable since I had my surgery – no changes no trouble as long as I don’t try to run or other high exertion activities.

 

 

 

2 Replies to “Rehab Life – the next chapter”

  1. What an incredible account. You are one of the most amazing people I know. I admire you so much and am so thankful for your awesome hubs and friends who are there for you.

Thanks for your input!