Off The Grid

Living off the Grid on a west coast island

first sign of trouble

Wednesday, July 14, 1999.

E had turned back from his usual lunch hour walk around Robson Street as he was strangely tired. He had played hockey the week before, but thought maybe he was tired from building the steps at the island down to the beach over the last weekend.

July 11, 1999 Decourcy
July 11, 1999 D

Our backyard was a mess from our week absence at the island but he postponed cutting the lawn and went straight to bed.

He called in sick to work on Thursday morning. I called our GP and they had an appointment at 9 or 10:30. We took the 10:30. We weren’t in a rush and we wanted to enjoy our coffee. E drove, it was just a couple of blocks. We got there for 10:45 and he went straight up. I stopped at the mailbox to mail my  organ donation card that came with my new drivers license. It was a gorgeous sunny day and I was in no hurry. Our GP could hear crackling in E’s lungs and suggested we cross the street to the emergency ward for an xray. We debated whether we would go home and cut the lawn first or just get it over with.. We expected a long wait in emergency and didn’t want to waste the beautiful weather sitting inside.. We decided to get it over with and E drove us over.

Our GP had called ahead to emerg and they were waiting for him. They took him straight in for an xray. When they came out the nurse hugged me and suggested I sit down, and maybe would want to take notes.  She was crying. The following is the beginning of my journal.

He has fluid in the lungs;his heart is not pumping effectively. He has congestive heart failure and needs to see a specialist. They have stopped all prescriptions immediately. It could be part of CTD  (they had been treating him for an unexplained rash on his head). The internist came out and told me they have given him Lasix by IV to relieve the fluid to his lungs. It is symptomatic of a heart attack in an older person but for a younger person it is puzzling. There could be a virus attacking his heart muscle. He needs an angiogram and maybe a heart biopsy.

They were sending him by ambulance to VGH . He is in heart failure.

At 5PM  Cardiac Care Unit at VGH I wrote that they had  given him two tablets of digoxen to slow his heart down

At 10 PM  I wrote that They have given him a pill to help his heart pump efficiently. A sleeping pill and a blood thinner. He is on O2. Fluid was building again so more lasix. They just came and took more blood.

In the morning I had called my friend in tears sitting on the curb at the emergency ward and she had driven me downtown, We found E all hooked up to machines in CCU. He looked just fine and it did not compute that everyone was running around in a panic.

Our GP, the Doctor who he saw that morning was the first in a large team of medical professionals who saved his life. Many of those with Giant Cell Myocarditis die as their GP’s diagnose them with the flu and send them home. The internist was the second.. The only way to accurately diagnose this disease was with a heart biopsy. It was an expensive and invasive test for the internist to suggest. In 1999 when E walked into Delta emergency ward there were only 63 recorded cases of the disease in the world. Most were diagnosed in autopsy. Most hospitals would not be capable of nor would they suggest a heart biopsy for a man with his symptoms. Neither Delta Emerg, VGH or St. Paul’s had ever diagnosed a patient with Giant Cell Myocarditis before.

All testing took place at VGH and it would be several days before he was accurately diagnosed and 20 nights before he came home. He has had probably 25 heart biopsies in 15 years and St. Paul’s is currently treating three Giant Cell Patients with successful heart transplants. I thought you might like to read a bit about the beginning of our journey and the amazing medical care he has received. Come back next week if you want to resume our off grid updates. This week I will reproduce

some of my notes.

Leave a Reply