Thursday, 27 June 2013

The phone rang

Carl called me from the hospital on Tuesday evening around 9:30 pm. "Hi," he said, "They called." "Who," I asked? "Toronto has lungs for me." Five words that made my heart stop. I dropped my knitting jumped up and danced on the spot. "But the pager never went off," I wailed.

I grabbed my prepacked over night bag, books and knitting bag, threw in the chargers for the cell phone and the tablet and my make up (of course), forgetting my prescription (also of course) and tore up to the hospital. For the next two hours we had a "Cluster of magnitudinal (my word) proportions" while they arranged transportation to get him to Toronto. You would think they had never done this before. I was wild with frustration. They wasted 2 hours of a 4 hour window. Finally EMS arrived and popped him into an ambulance and away they tore.

I ran out of the hospital hopped into my little blue bug and went screeching out of the hospital straight to Tim Hortons for a "large coffee double milk and step on it." Hit the 401 straight to Milton where I picked up my BFF Sandy, around midnight, with all her bags and pillows. Knitting bags being a prerequisite to any crisis and off we went to Toronto. Parked the car then tried unsuccessfully, at first, to get into the hospital which was now locked down tighter than The Tower of London (the other one). Finally I threw myself on the mercy of a security guard in emergency who let us in. We found Carl. whew.

Now more waiting. Around 5 in the morning Sandy and I fell asleep for about an hour, sitting upright in the world's most uncomfortable hard chairs, thank gawd we had pillows. Surgery was booked for 10 am. We had a report the lungs had arrived and were being assessed. Surgery might be noon or 1pm. It was agonizing. We kept reminding ourselves that this might be a false alarm. If the lungs were not perfect the transplant would be cancelled. We were afraid to believe this was IT.

Two doctors from the actual team came in and said Carl would receive a double lung transplant (this decision is made at the last minute, depending on the need, the viability of the lungs and who knows what else). The Dr took a black magic marker and wrote his initials on each collar bone, Kinda spooky. We were told that within the next 30 minutes Carl would be taken to the holding room before the OR. They had already given him the first anti rejection meds and hooked him up to an antibiotic drip in preparation.

At 11:30 they said we are taking him straight to the OR. I went with him to the OR doors kissed him and saw the door whoosh shut behind him. I stood alone in the hall. It was the worst moment of my life. There is so much hope and fear wrapped up in that moment.
The doctor had told us to go somewhere, anywhere but at the hospital. It would be hours before there would be any news. Surgery was expected to be about 12 hours.

We booked into the hotel and dumped our stuff and went to a pub for lunch. I had Bombay chicken curry and a pint and Sandy, as my designated "walker" had  coffee and a modified version of the curry. Not sure if that is in the right order but anyway ...
Back to the hospital. This time we were directed to the surgery waiting room a VAST improvement over the first waiting room of hell. This one had cushions! ... and you could actually put your feet up. I crashed for about an hour.

Around 1:30pm a nurse came to tell us they were removing the left (the worse) lung first. The Dr is a perfectionist!  Carl will be pleased to hear that. She was all smiles and confidence.
At 5:30pm a different nurse came to inform me that they were starting to replace the right lung. We were amazed. Everything was moving so quickly now. Carl was doing well and the team were very confident. 
Shortly after 8pm the Dr came in to say that they were finished  (3 hours sooner than projected). He was beaming. The surgery was problem free. They didn't have to use the heart lung machine Carl had done amazingly well. The surgeon, Dr De Perrot, was all smiles and looked as if he had been relaxing all afternoon, not standing for 9 hours saving Carl's life. I was weak with relief. He said to wait about an hour to give the team time to settle Carl into ICU and then go upstairs. 

Sarah (Sandy and Ernie's outstanding daughter and Justin's baby sister) arrived with a picnic feast which she spread out on a small table complete with Christmas napkins. We were famished. We laughed with tears and devoured almost everything. Hugs and Kisses and Sarah left to wend her way thru Toronto traffic upon her mighty bicycle, "Get your Valet parking out of my bike lane." Love her to bits. ♥

Around 9 pm Sandy and I went up to ICU. I was told I would have 10 minutes with him. I had to touch him and know he was ok. Sandy waited while I went in. A very intimidating place and I had already seen him in the ICU in London. This place is HUGE. They were taking an X-ray when I got there. He was completely sedated. I felt his brow, held his hand and told him I loved him. 

Sandy and I were giddy as with exhaustion, we staggered back to the hotel. Two old bag ladies, lol  We crashed and I mean CRASHED. Hardly had the strength to swipe the screen on the tablet. Sweet sleep.

This morning we were back at the hospital. The best (or we were starving) scrambled egg with salad stuffs wrapped in a pita. oh yum. Up to the ICU, had to wait a while after being snarked at by a clerk. Sheesh we didn't know the protocol. Pardon us.
Carl looks wonderful. He was sedation free. He knew me and waved to Sandy. I stayed with him for about an hour and then left to take Sandy home and come back to London and take care of a list of things I didn't do on Tuesday. 
Tomorrow I am back to Toronto to spend as much time with Carl as they will allow and next week I have to look for accommodation for the next three months (at least) for the two of us. I am still wound up and am having a hard time to settle down.

To the donor family: Your angel will be a part of our life forever. We will never forget you and will honour June 26th as a Special Day for the rest of our lives.

Saturday, 22 June 2013

... and so we wait.

If there is one thing that you will learn, if you are unfortunate  enough to have anything to do with pulmonary fibrosis, it will be; "How to wait."
I always said, " Once we get the pager waiting will be a breeze because we know we have done everything we can do." That was before the pneumonia and Carl's "incarceration" at the Victoria Hospital. Our practical side understands that this is the wisest course of action. Our emotional side chafes at the separation. 

The staff have brought us another large chair bedside and to what we jokingly refer to as our "living room." at least we can both sit side by side comfortably and talk. Carl has physio 2 times a day on weekdays on the weekend I walk the halls with him at least once a day. He has only been outside three time since May 5th. Today was far to humid so we stayed indoors. He watches movies and reads the newspaper on his tablet and I knit or read. We nap in the afternoon. Not exactly the exciting life we hoped for but that will come in time.

Carl is on his 6th room mate now. Hospital protocol, being what it is, he has had 4 female and 2 male "roomies." Our present companion is an elderly lady who, as her daughter said, "Would have a fit if she knew there was a man close by." We are keeping Carl on the "down low" but I think she has figured it out by now.
We received a very touching note recently from our last companion. It was very gracious and brought a tear to our eye. She and Carl had an opportunity to chat and joke a little. Here I was thinking how nice that was from our perspective, we had no idea our friendliness had meant the world to her. Their card is on our bulletin board and I think of Virginia and Jerry every time I see it ♥

The most difficult question we face  is, "How can you wish/hope/pray for lungs when you know that means someone will die."
Our Doctor said to me, "People die everyday, pray instead that the family will make the decision to allow organ donation. Let them have a living memorial to carry them through the difficult days by knowing that many lives were saved. Their tragedy and loss will be no less painful but in time they will remember the gift they imparted." That is the thought, the prayer, I hold in my heart. 

Thursday, 6 June 2013


My father used to say, " Patience is a virtue, sought by many and found by few."

Carl is making excellent progress with physio. He managed a stroll all the way down the hall and back. Larry and Heather (his PT's) are very encouraging.
His appetite has improved now he is on a regular diet. Today Carl said, " Who would have thought I would say hospital food tastes good?" I said, " If they had the pureed diet first, they would this is fine dining."
The doctors have decided he is going to stay put in hospital until the "call" comes. There are too many variables right now and we do not want to do anything that would jeopardise his place on the transplant list.
I pack my lunch and my supper and take it with me to the hospital. A couple of times a week I will come home early for a hot meal.
We spend our days chatting, napping, he plays with the internet on his tablet, reads me the news and I knit.
We wait for the phone to ring. We try not to think about it but we do. 


Saturday, 1 June 2013

Quite the week!

Well, this has been quite the week. Carl has been moved to a room on the respirology floor. Progress is slow but there is progress. We are back on the transplant list as a Status 3 critical. My bag is packed and we are ready for the call.
Physio comes by every day to take him for a walk. He uses a stationary bike at the chair and he is using arm and leg weights. If they add a walk he is exhausted for the rest of the day. The goal is to try and get him back to where he was a month ago.
Three weeks of the ventilator tube has played havoc with his voice. My "radio announcer" will be back but it will take time. Some issues with swallowing also due to the vent tube. The last thing he needs is to aspirate food . Their solution is the "thick" diet for the meantime. It is disgusting but necessary. All fluids are the consistency of honey, even water. gag. He is still on an IV drip to make up for the lack of fluids. He has no appetite, not that I am surprised. A plate with a grey pile of purred something surrounded by a green mass and a white mass is less than appetising. I brought him some Greek yogurt from home, which he enjoyed.
I will never forget the medical team in the ICU. This bears repeating. They were outstanding in his care for him and their kindness to me. I am trying to think of something I can take them as a thank you ♥