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.


***

A Home of Our Own

My MIL's house, left to her by her mother. We've never been happy here.

Yesterday, Colleen and I had a difficult conversation in the car on the way home from Mt. Forest. It’s a topic that resurfaces periodically and never seems to be dealt with. A few days ago, I was perusing ads for Windsor real estate and once again I noticed how affordable houses are in Windsor. It’s really remarkable. The combination of inexpensive real estate and low interest rates means we could own our own home in Windsor for less than half of what we pay here for rent.

So we discussed this. Again. We’ve talked about it a dozen times, but we can never come to a decision. Yesterday, we decided on a plan of action.


We'll stay in this crappy old house for another year. We'll pay down our debts and when Ivy is finished high school, we’ll take a serious look at relocating to Windsor. Or somewhere. We want our own home. We want stability for the future. We want a finished basement, a garage that fits our car, a proper deck in a back yard we can use. We’re sick of the traffic here, the noise, the frantic pace of Life. We are really not happy here in Toronto. We've paid Colleen's father $1000 every month for eight years. If we had applied that money toward a mortgage, we'd be much further ahead today. And I could leave Colleen with a home of her own after I'm gone.

*** 

A Progressive Disease Progresses

Friday. I didn’t sleep well last night. I don’t think Colleen did either. We were out the door at 8:30 this morning to catch the bus. We took the subway to Toronto General Hospital. We got breakfast in the food court and then rode the elevator to the 10^th Floor respiratory clinic. I barely had time to finish my coffee in the crowded waiting room before they called my name and led me off to do the various components of the pulmonary function test. This was my fourth time, and each time so far has shown a slight decrease in lung function. The first time I did it, two years ago, I scored a 97. This means my blood contained 97% of its optimal oxygen level. About a year later, it was 90%. Eight months after that (today), it was 84%. That’s a decrease of 13% over two years. 6% in the last eight months. Dr. Lau was concerned, concerned enough to schedule my next test in four months instead of the six month interval we’ve been following. He also strongly recommended I submit to a lung biopsy.


“It will specifically identify IPF and give us strong indicators of the exact type of pulmonary fibrosis we’re dealing with. A definitive diagnosis will also help us map out a treatment strategy. We can’t stop the scarring, but there are drugs available to help slow the progression of it.”


I’ll be hearing from a surgeon soon to schedule an appointment to discuss the biopsy. And at Colleen’s insistence, I’ve agreed to attend the pulmonary rehabilitation programme at Toronto Western. They work with adults with chronic lung disease to improve their ability to care for themselves. The clinic teaches skills such as stopping smoking, exercise, coping strategies, proper nutrition and ways to control fatigue and shortness of breath. Patients attend weekly sessions for a maximum of 3 times a week or a total of 36 sessions.  The fun will begin next month, I think. Oh well. At least I’ll have something to do after I retire.


At the Swiss Chalet across the street from the hospital, Colleen dipped a French fry in a small bowl of gravy and took a bite. When our eyes met, she raised her perfect eyebrows.


“So?” she asked. “How do you feel?”


“Scared,” I replied.


“Me too,” she said. And then she cried.


I’m glad I’m retiring. A shit storm is coming. And I feel so sorry for Colleen.




***