Pills!

The sudden eruption this morning of two barking dogs announced the arrival of my medicine. I opened the door and stepped outside to meet a smiling, but timid delivery man. He held a white box that could easily have held two watermelons and a full sized pumpkin.

"Are these my pills?" I asked incredulously. "My OFEV?"

"I do not know," said the smiling man. "I am delivery only."

"Does this box also contain my heroin? I specifically ordered heroin." 

"I am delivery only."

I could see language was a problem. My humour was lost on him, but that didn't stop me from trying one more time.

"Crack? Coke? Meth?"

The smile was gone now. He handed me the box. I'm waiting til Colleen gets home before I open it.

It feels like Christmas. It feels like a kind of hellish macabre Christmas in a scary dream. And when I awaken, idiopathic pulmonary fibrosis will still be with me, still hiding in my chest, still programmed for evil. But the pills may help. The pills must help. They WILL help. They will stop the formation of any new scar tissue. The side effects may be unpleasant, but if they can stop this disease and maintain my health indefinitely, a sore bottom and a bit of nausea will be a small price to pay.

Stay tuned ...


*** 

Mornings

Saturday. 

I pull the bedroom curtains back to reveal more cloud and gloom. At least the rain has stopped. God, I am tired of these sullen skies. I try to remain hopeful of a return to sunny spring. Every morning, I wear my heavy coat and wellies to walk the dogs. The oxygen tank hangs with a strap over my shoulder and plastic tubing goes round my ears with an attachment for my nose. The cold air makes the tubing less pliable and I wrestle with it sometimes to keep it in place. A brief hiss of air precedes every inhalation. My gait is short and slow, deliberately timed to set a beat for the hissing regulator. Three steps then one breath. Thump thump thump hiss. Thump thump thump hiss. I hate mornings. Mornings are hard.

Meanwhile, Here In Mimico ...

Colleen is sending pictures from Costa Rica of warm sunsets and tropical drinks. She and Ivy plan to take a sunset snorkeling and catamaran excursion this afternoon. Here in Mimico (i.e. Realityville) it’s cold, and pouring rain. The dogs have to go out again. Percy is at my elbow. Maisy is barking at nothing. I’ve been invited to have dinner with my in-laws. Also, a friend called this afternoon to invite me to join them for lunch. His invitation came too late, though, because I was busy with a call from "Dian" , the TGH lady who will help me with the funding of OFEV – a very expensive prescription. So yeah. I hope you're having a lovely afternoon, Colleen. I’m not.

After she spoke with me, Dian called Sun Life, our insurance provider. She was told we have only $800 left on our policy. It will renew, but I can’t remember when, or how much we’re allowed to claim each year. I do recall thinking the amount was pathetic, especially given the fact that we pay these pricks $400/month and have been since long before I retired.

Luckily, there’s help. A provincial assistance programme called the Trillium Fund will cover a portion of the $3800 monthly cost of the medication. A large portion. But only after our private plan is exhausted. And there is a deductible cost, which is apparently 4% of family income based on 2016 income tax return. Fortunately, there is another programme, this one through the hospital, to help with the deductible costs. It’s called the Head Start programme, I think. 

Filling out applications, and submitting tax forms, and obtaining permissions and approvals and pre-approvals ... It’s a very complicated process. I’m overwhelmed, quite frankly. My head is spinning. But Dian is very pleasant and has promised to help me every step of the way.

Today, I give thanks for Dian. Thank you, Lord, for Dian.

Tonight, I will dine with my in-laws. I think I will try to steer the conversation away from matters involving my health. They haven’t yet shown much concern. So I’d really rather leave them out of it. At some point, Colleen will no doubt need their support. But at this time, I don’t want anything from them. I’ll just laugh and smile and pretend everything’s GREAT. They'll be comfortable with that. It’s what they’ve done for the past forty years.

*** 

Accessories

A man came this morning to bring me more oxygen. He delivered six portable cylinders and one larger one that sits in a little cart with wheels. That one, he said, is kind of an emergency store. If all of my portable cylinders are empty, I can pull the big one around in the cart. I pray to God I never have to use that one. But I dare say the day will come ... 

He also delivered an over-the-shoulder bag to hold a small tank. It’s much easier to deal with than a backpack, but still a struggle with my heavy coat. I know I ought not wish my time away, but I honestly cannot wait til spring. 

The Progression of a Progressive Disease

Friday. This is the day I’ve been dreading. Today we went to TGH for another checkup. This time, a CT scan was done first. My appointment was set for 0900. We arrived at the hospital in time to have coffee and a light breakfast before heading for diagnostic imaging on the 3^rd floor. We met a neighbour – Erin – outside the elevator and spent five minutes together in awkward conversation. Erin works as an administrator at the hospital. When we told her about my lungs, she smiled and said, “That’s good.” I guess some people don’t know how to respond to sad news. It’s always difficult, isn't it?

The scan was easy. I was done in less than five minutes. The technician was a girl – young and pretty. My friend James send a message of Love and luck. James is a good man. I also read messages of hope and encouragement from Jim and Kim, Val, and from Dorothea, a lady at church.

The pft took a bit longer this time. New equipment provided a challenge to the older technician. But we got it done eventually. And the six-minute walk was also challenging, this time for the patient. I have done the walk many times before, Ms J, but never has it seemed this long. Or this exhausting. I used to walk it with vigour and purpose, trying to go as far as I could each time. But this time, I was less enthusiastic. Yes, I walked quickly. I gave an effort. But I know I did not walk as far as I have in the past. Even as I walked, I knew I was falling short. But I didn’t seem to care.

When we saw the doctor later, we viewed the images from CT scans past and present. The scarring on my lungs was quite evident. The progression was obvious. Although the doctor did not discuss specific results of the pft, we all understood there was a demonstrated diminishment of lung efficiency and capacity. He recommended I begin taking a drug called OFEV. It’s a special drug, extremely expensive, and not readily available through our local drugstore. We’ll have to get it from the hospital pharmacy. After a flurry of paper work and red tape involving our private health insurance, our government health insurance and the drug manufacturer, it will at last be delivered to our home. The process, we’re told, could take a fortnight.

“It’s absolutely brutal on the stomach,” the nurse told us. “DO NOT take it on an empty stomach. Ever.”

Common side effects are nausea, diarrhea, vomiting, stomach pain, liver problems, decreased appetite, headache, weight loss, and high blood pressure. Both the doctor and the nurse told us diarrhea is the hands down most frequent complaint. The nurse offered hope when she said the dosage can be reduced somewhat to relieve the side effects without reducing the efficacy of the drug. The daily dosage is 300 mg - i.e. 150 mg in the morning, and the same at night. The doctor suggested I start with one pill per day for a week or so and see how I react before increasing the dosage to two pills. I think that’s a grand idea.

The doctor (respirologist Dr. Lau) also recommended supplemental oxygen. We hadn’t been home from the hospital an hour yet when a man from the oxygen company phoned and woke us from a sound sleep.  We were napping. We didn’t sleep well last night. He arranged to call round this evening and despite snowy roads and bad visibility, he came. He arrived at 8:30 and was here for an hour.

So.

We now have a machine in our dining room that produces concentrated oxygen. Thirty-two feet of bright green plastic tubing can link it to my nose to provide me with supplemental oxygen around the house. I really doubt I’ll use it much. But it’s there. For later. I also have portable oxygen tanks that can be carried about when I leave the house. I can imagine myself using this when I walk the dogs in the morning.

And so it begins. Can’t wait to get started on that ghastly medicine.

“It’s absolutely brutal on the stomach.”

***

Yeah. It's Me Again.

A friend recently opined, "You're a busy blogger, lately." He's spot on. I've a lot of thoughts lately. And as they swirl about my consciousness, they stir up more and greater concerns. The latest and greatest of these is ... well, suffocating, of course. But I mean apart from that. I seem to spend a lot of time these days pondering the effect of being drawn in and swallowed up by the massive vortex of our healthcare system. We all know someone who's been there. Their calendar is filled with appointment dates requiring multiple hospital visits each week - diagnostic tests, blood tests, paper gowns open at the back, white coats and their repetitive examinations that poke and prod. The same questions asked over and over. A bathroom counter or night table littered with plastic medicine bottles. Drugs to fight disease. Others to fight the side effects of the drugs to fight disease. 

I like my Life. Indeed, I love my Life. I am retired from my job as a locomotive engineer. My pension is sufficient, more than sufficient. It's $60,000. And Colleen's new job pays her that much and more. Since my diagnosis, we've enjoyed four fabulous years together. We've traveled. We've enjoyed Life. I am happy. I know I complain a lot, but quite honestly, I've never had it so good. Colleen is a wonderful, caring wife. She and her daughter Ivy took me in and made me part of their little family. For the first time in my adult Life, I am truly content. But, as the old song goes, into each Life, some rain must fall.

Colleen has always been there to hold an umbrella for me. But I'm afraid this time, the storm may be too much.

Into each Life some rain must fall,

But too much is falling in mine ...

Or will, perhaps.

***

Oh Me! Oh My! O2!

Monday. Colleen is off to work again, still loving her new job in Oakville. She left the bed when her alarm sounded at 6:00. Mine was set for 7:00 and I lay there awake for an hour, waiting for it. Might as well have gotten up with Colleen. The dogs went around the block with me in -13C weather. Have I mentioned my aversion to winter? It's a chore to don heavy clothes and then march around on icy sidewalks. My coat alone probably weighs 10 lbs. I'm not a fan of winter.

Jeanette called from the hospital today. I don’t know Jeanette’s last name. She’s a Chinese woman with a thick accent. Her job is to arrange appointments for patients in the respiratory clinic. My job is to try to understand her. Together, we decided on a date of May 11^th to see Dr. Shapiro for a “transplant evaluation.” It’s not the BIG group information session, but rather an appointment with the department head to decide whether or not I would be a suitable candidate for the programme. If I am accepted as a viable candidate, the next step (according to Jeanette, I think) will be a meeting with the transplant team. That’s the BIG one, the overwhelming one, the one to which we’ve been advised to bring a second or even third support person. The sheer volume of information, we’re told, is astounding. It will surely be summertime before that meeting happens. And of course, people go away on holiday in the summer. So it may not happen until the fall.

A more topical concern is my February 9^th appointment which is this coming Friday. I’m to have a CT scan at 0900 and then the now familiar pft (pulmonary function test) followed by a monitored 6-minute walk. Then we’ll see the doctor. He’ll peruse the test results and again advise portable oxygen along with those dreaded anti-fibrotic pills. I don’t want to upset Colleen, so this time, I will agree to both.

“I know you don’t want those pills,” says my sympathetic wife. “But just try them. Maybe you won’t suffer the side effects, or maybe not as much. Try them anyway. If you really can’t stand it, you can always stop taking them.” 

Looks like February will be the month of stomach troubles. It’s a helluva way to lose weight, friends, but that will be the up side. I hope I feel well enough to continue to visit Mum and Dad. And I guess I’ll investigate the use of supplemental oxygen. I'm not thrilled about wearing a little backpack, or carrying a "man bag", but I know it'll make walking the dogs a lot easier.

***