The Trials of Winter

Monday. The snow arrived last night. But it was less here than forecast. Only an inch or two here in Mimico. More fell, though, a bit further north, away from the lake. Colleen helped me clear the driveway and sidewalk. I was glad of her help. She did most of it.

I went to my respiratory rehab exercise class this morning. Not many were there, I suppose because of the weather. I did ten minutes on each leg on the stationary bike. I always find that particular exercise to be the most taxing. Then I did ten minutes on the standing arm bike. Boring. Difficult and boring. The walk up the hill afterward from the building to the car park was an effort. I was truly exhausted. I could easily have fallen asleep in the car. I actually sat for a few minutes before I felt alert enough to drive.

I am affected now by moderate exertion. I wonder if this is a result of worsening lungs. (or perhaps I know for certain) The other day, I made an attempt to split some firewood. After only six swings of the axe, I was completely and utterly exhausted. So much so, that I couldn’t move for a few minutes even to store the axe away in the garage. I don’t remember if I was successful in getting even one small piece of wood to add to the pile. I began to relate this story to Colleen tonight, but I changed my mind and ended up telling her something different. She knows my lungs are weak. She doesn’t need to know they’re getting worse.

...

Andrei

Andrei was my best friend. When we were boys, he lived next door to me and we were inseparable. I admired him for his kindness, his gentleness. He was a good listener, and wise, I thought, beyond his years. But before we reached our teen years, his family moved away. Miami, Florida became his home. He became Americanized. Although we haven't seen much of each other over the past 40 years, our friendship has endured. To this day, I consider Andrei my best friend.

He phoned me on my birthday recently and left a message on our machine. I called him back on Monday to thank him for the call. I promised myself I wouldn't discuss my health concerns, but he asked how I was feeling and I knew he wasn't making idle conversation. I hadn't divulged my IPF to my friend and I made the decision then to include him in my small circle.

As we talked, I could hear the sadness in his voice. He was hurt that it had taken me so long to tell him. And now the discussion was turning my stomach sour. At first, it was nausea. But suddenly, the feeling made a sharp U-turn. I barely made it to the toilet in time.

This stupid disease is affecting me in ways I never imagined. Apparently, I don't need the doctor's pills to experience stomach distress. I know it's only anxiety that turns my stomach, but I wonder if the pills I get will make matters worse.



***

Correction: Yes. It's Official. I Am Dying

We were in the car this morning, returning home from taking Ivy to work. Colleen switched the music off and turned to me.

"So? What did you think about the doctor appointment yesterday? We never really discussed it. How are you feeling?"

I told her I felt a bit frustrated that the doctor was still reluctant to offer a definitive diagnosis.

"He said, 'I'm not ready to give a diagnosis of IPF', Colleen. What the hell is he waiting for? How much evidence does he need?"

I watched her perfect eyebrows come together before she spoke.

"That's not what he said, Hon'. He said he was NOW ready to give a diagnosis of IPF."

We both stared straight ahead in the silence that followed. The traffic light turned green. We followed the car ahead of us through the intersection. I felt my chest rise and fall with my breathing. I was breathing. And the sun was shining.

"I'm OK," I said. "I guess I misheard him."

I slowly filled and emptied my lungs a couple more times.

"Maybe I only heard what I wanted to hear. Or ignored the difficult part."

I'm going to visit Meagan on Tuesday. It's time to tell my kids.

Test Results: Am I Dying Or What?

We saw Mr. Muscles this morning. Dr. Moric is his name. He's young, handsome and brilliant. (Why can't these gifts be spread more evenly among the population?) Anyway, he spoke with us about the condition of my lungs. He noted I was still quite healthy and asked about immediate plans for the future. We told him we planned to visit the UK next month.

"Alright," he said. "I'd like to see you when you return. It's time to discuss drug therapy."

I changed the topic slightly and asked him if I do indeed have IPF.

"Well, with the biopsy, we were able to rule out a number of interstitial lung diseases," he said and leaned forward in his chair. "I'm not ready to give a diagnosis of IPF."

Colleen says I'm a pessimist and maybe she's right. But I took no comfort in the doctor's pronouncement. Repeated pulmonary function tests show my lung function has decreased, and is decreasing. My lung capacity is currently at 71%. I feel physically weaker than I did a year ago. My lung tissue shows a honeycomb pattern consistent with IPF. Other doctors have advised me to "get my affairs in order." Honestly? I believe I have Idiopathic Pulmonary Fibrosis, a chronic, progressive, fatal lung disease. The good doctor is kind to offer me hope. But I don't accept it wholeheartedly. I do hope that the drug I'm prescribed will act as advertised and slow the progress of the scarring.

"How much slower, Doc?" I asked.

"On average, about 10%," he replied, and then began to discuss the unpleasant side effects. "Nausea, diarrhea, vomiting, skin sensitivity, fatigue."

In the quiet of last night's pre-dawn, a thought came to me.

"If my lungs are truly buggered and I will not live to grow old, I should live each day to the fullest. I should stop worrying about money and simply enjoy my Life."

And by God, I'm going to try to do that. We're off to Wales and England and Scotland next month. When I get home, I'll go visit Dr. Jako Moric and he'll prescribe a drug regimen that will slow the progression of my disease, and make me feel like shit.

Ten percent ain't much, is it? It'll give me 10 percent more hope, though. And 100 percent more stomach aches. Stay tuned ...

***

Fat. Old. Useless.

I know. It's not very flattering, is it? But that's how I feel about myself these days. I have no job to go to. No one is expecting me. I miss my work mates like crazy. And I'm still fat. Not as fat as I was, mind you. I've lost about 14 lbs. But I still feel overweight. I'm weak, too. I feel tired, and lazy. And just ... old. Colleen is young and fit and beautiful. Sometimes I really wonder what she sees in me. I'm so blessed to have her in my Life. Ivy too. I know I'm getting weaker because I often wish Colleen and Ivy wouldn't walk so fast. They're only walking at a normal speed, but it seems fast to me. Everything I do happens more slowly these days. Items I lift seem heavier.

Twice a week, I attend a respiratory rehab centre to lift weights and use other exercise machines. I feel like the healthiest person there, as most of the participants are on portable oxygen. The physiotherapists are all young women, fit and pretty. I must say I enjoy the scenery there. My goal is to increase my level of fitness and continue to lose weight in order to present myself as the best possible candidate for lung transplant. They tell me I'm nowhere near the point of transplant yet, but by starting early, I hope to gain an advantage over those who simply allow their health to deteriorate.


Last month, I had a lung biopsy. It was simple enough. General anaesthetic. Poke a hole in my side, and snip off some lung tissue. I was home the next day. Two days later, we left for a 3600 km car ride into northwestern Ontario. I was absolutely fine. Hardly took any pain medication at all. And I healed quickly.

I did another pulmonary function test yesterday after my exercise class. I told the technician I'm fine, except that I feel as though I'm only using about 3/4 of my lung capacity. It feels like I ought to be able to draw more air into my lungs. She said I was accurate and that I was indeed using only 74% of my maximum. That's a decline of 10% in the last three months. I haven't mentioned that to Colleen. She worries about these things. A lot.

On Friday I'm to see the lung specialist at the respiratory clinic at Toronto General Hospital. I understand it's Dr. Moric, the handsome fellow with the bulging biceps. He'll interpret the findings of the biopsy, review the results of this latest PFT, and discuss with us our next options. I guess he'll either confirm or deny the dreaded IPF diagnosis. I'm not feeling particularly optimistic.


***

The Wait Is Over

I was on my way to Kincardine yesterday morning to accompany my son to court. He's suing his mother (yes, that's right) for custody of his ten-year-old son. Anyway, I was enjoying sunshine and Gordon Lightfoot when my phone rang. It was a girl from the hospital.


"Hi Dale," she said. "It's Myreen from Toronto General. Is this a good time to talk?"

I told her there was no good time to discuss a lung biopsy, and she laughed.

"Don't freak out, but we've got you scheduled for a pre-admission appointment on Monday."

"You mean this coming Monday?" I asked. "Like after the weekend?"

"Yup," she said. "The Monday that comes after the weekend. And your surgery is set for Tuesday, the one that comes after Monday."

Monday: Pre-admission appointment 1030
Tuesday: Admission/surgery 0700
Wednesday: Rest/recover at home
Thursday: Colleen's university graduation ceremony 0930 followed by CN Tower lunch
Friday: Proposed departure Yonge Street trip 0500

It's gonna be a busy week.


***

Still Waiting ...

Well, it's the middle of May and we still haven't heard from the hospital. They were supposed to call us with an appointment date to meet with the anaesthetist and to schedule a time for my biopsy. I want to hear from them. And I don't want to hear from them. July will be a busy month as we've agreed to care for a friend's dogs while she's away in England. Percy will have two playmates here for five weeks. And then, only a week later, Percy will go off to live with his two mates, Axel and Einstein at their house for three weeks while we go to England, Scotland and Wales.

I am trying to plan my summer here. Don't they know I have better things to do than lie unconscious on an operating table while a doctor drills holes in my chest?

I want to hear from them.

And I don't want to hear from them.


***