off grid stuff

Ok, so full disclosure we opened the champagne at four and the celebrating has continued.. so as always, when wine in hand, I feel the need to write.

To share our current conversation….. It has been recently mentioned how a second transplant could be in our future… If you talk to E.. it is never going to happen. If you talk to the statisticians it’s likely and if you talk to me, I normally just sigh and change the topic.

But tonight I said to E that one of the reasons, other than the obvious, that I would hate to see us have to go through it again is because of the advantages of our blissful naivety the last time. So many things happened last time which we had NO IDEA were as big of a problem as they were.. Now we laugh and laugh.. Thinking how lucky we were and how stupid we were.. But if it happened again, I think I would be a little more alarmed (and rightly so)…

Whether you want to hear them or not .. here are some of our top four naive moments..

  1. When the Doctors first diagnosed E, a perfectly healthy looking 42 year old with a fatal disease requiring a heart transplant as his only chance, they sent a liaison from the transplant team to meet me and answer questions. He was 42. a federal government employee with only 7 more sick days coming to him that year. She said very kindly. Ask me anything. How can I help you? My first question and she has since teased me about it , was “How many days should I tell his boss he will be off from work?” Side note, he was never able to go back to work.
  2. After being transferred from Delta emergency and then from Vancouver General Intensive care to St. Paul’s cardiac care they wanted to assess his base level and took him off to an exercise class. E had been playing hockey the week before so as he looked around the room at the frail old men he thought “I got this!” Sitting in a chair he was asked to raise his arms. He passed out and was rushed back to his hospital bed with a blood pressure reading of 60/0 (zero!!)
  3. After waiting on the transplant list with a beeper for four months, we overslept one morning for our sons 5 AM hockey practice. E jumped from the bed to rush to his bedroom and wake him. E dropped like a brick on the floor. Briefly unconscious. But he came to and got up. We all continued as normal but at routine office hours, I called the doctors to mention what had happened. E’s Dad had already left for the ferry to the island. He stayed with us regularly to help with the kids when E was in the hospital but would go home to the island when things were stable. After hearing my story of E dropping to the floor the Doctor told me to GET HIM TO THE HOSPITAL.. they met us at the door and put him on a dobutamine drip to keep his heart pumping.. They told us the heart was just about done, he wouldn’t be leaving again without a transplant. I called E’s Dad, he had already paid for his ferry ticket and had to turn around in the on loading parking lot and ask to leave.
  4. When E got sick he didn’t have a will or a power of attorney signed. As a mother of three young children you can imagine how stressed that made me. If I asked him to get his affairs in order it would sound like I didn’t think things would work out. But if he didn’t get his affairs in order.. well .. it added to my stress level which was over the top as it was… My Doctor who was prescribing my happy pills coincidentally had dinner with E’s cardiac specialist. When we went to our next regular weekly clinic we were given our usual list of testing and appointments. This week though, there was a different appointment. We were scheduled to see a social worker. The social worker told E to plan for the worst and hope for the best. Asked him if he had his affairs in order… I remember sitting in a cafe on Burrard after the meeting and E looked at me and said.. ” I guess I need to have a will” Our Doctors were awesome

It was a lifetime ago and I really can’t imagine how we would have survived the whole time without the support of our friends and family….

I love E. I love you all..

I thank each and every one of you in our lives….

tomorrow we will get back to

off grid stuff

5 thoughts on “off grid stuff

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