Zzzzzzzzz

I'm tired. The last couple of days have been a real challenge. I don't feel like doing anything. I could nap both morning and afternoon. I don't know why I feel so lethargic. I go to bed early - around 10:00 - and I'm awake again by 7:00. Sometimes, I lay awake in the middle of the night, pondering my uncertain future, but lately, I've slept soundly the whole night through. So why am I so tired?

I go round the block with the dogs, marking my progress with each section of sidewalk. I always take my portable oxygen with me, but honestly, it doesn't seem to help much. I don't feel short of breath. I feel tired, as though my legs have walked a hundred miles. Observers must think I'm an old man. My father is 96. That's how he walks. When I reach home again, it's nearly all I can do to climb the four or five steps to the front door.

I have a pulse oximeter. Colleen got it for me months ago. It hangs forgotten on a hook in the kitchen. I really ought to take it with me when I walk the dogs and use it to monitor my oxygen saturation levels. I guess oxygen starvation is the most probable reason for my condition. I suppose I should be using supplemental oxygen indoors as well. And maybe my portable unit needs to be adjusted to provide more O2 when I venture outdoors.

I'm to see my respirologist in November. If I stick to my diet, I'll have lost about 30 lbs by then. The doctor will be pleased, I'm sure, but I suspect he'll propose an exercise regimen. I know it would be a good thing. I just don't know how I'll summon the energy to do it.
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"On the Run" Epiblogue: CN have located Dad's file and found proof of his marriage to Mum. All is well again. For now.

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On the Run

Colleen was up early this morning to go running. Her plan today was to cover 18 km. She left the house at 6:00 and I immediately got out of bed. I washed and shaved and dressed, and was surprised to note that it took me over half an hour to do so. I really don’t move very fast in the morning. Mornings are hard.

I’d like to go to Mt. Forest this week. I’ve asked Pat to come with me. He says Monday is a good day for him and so I hope to go tomorrow. I’ve requested the services of our dog-walker, but she hasn’t responded to my text message. I still want to phone Dad and tell him tomorrow is the day. There’s something there that requires attention. It’s rather urgent.

The last time I visited, Dad showed me his annual pension statement from the CN pension administration. He's probably gotten one every year since retirement. The letter showed Dad’s profile – full name, address, employee number, etc. That part was fine. Noteworthy, was the section that held information about an eligible spouse. In the space beside that, it said No eligible spouse. That was the part that I found disturbing. Mum was not listed as a beneficiary. If Dad had died, Mum would not have been eligible to receive survivor benefits, an amount equal to 50% of Dad’s current CN pension, or about $600/month. I cannot believe this oversight has gone unnoticed and uncorrected since Dad retired in 1981.

I have spoken with CN’s pension administration people in Montreal. They seem to be as bewildered as I am. The man promised to look into it and get back to me. Meanwhile, I will look to see if Mum and Dad have a marriage certificate. If they do, it will go as proof to Montreal. If not, I have prepared an official Request for Marriage Certificate form. It’s filled out and ready to be mailed to the Office of the Registrar General. 

Dad is 96 years old. He and Mum have been married since 1949. I’m glad we discovered this mistake before it was too late. This is one more bump in the road as we continue to care for our aged parents. We're still waiting for a room for Mum in long-term care.

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Hoy. How's It Going?

Well hello there, Blog ol' buddy. It's been a while. Sorry I've ignored you. I've been posting some of my public thoughts to Facebook. I've actually found a lot of support there from friends and family. I know it's easy to click on a Like button or post a wee heart in response to a post, but still ... Many people have posted words of concern, or encouragement. I'll take support any way it comes.

I had coffee with a friend this morning. Rick is a recovering crack addict. He's doing well and I'm really proud of him. With the help of a drug called Suboxone, he's been clean about nine months. That is an absolute personal best for Rick. In combination with counseling, Suboxone is used to treat opioid addiction.

After coffee, I dropped my friend off at the subway station and returned home and took the dogs for a walk. Then I cut the front lawn and picked a few weeds along the sidewalk. I filled the lawnmower with gas and stored it away in the garage. It was lunchtime then, so I had some tinned salmon and bread. I've been on a Weight Watcher's diet and lost about 15 lbs since August 1st. I'm really chuffed about that. Anyway, when I finished my lunch and tidied up, I was exhausted. I just couldn't go on. I sat for about ten minutes before I felt strong enough to climb the stairs to my office and write this post.

Climbing stairs is becoming a bit of a challenge. It's not impossible. Not yet. But it does require more exertion than it used to. I'm always a bit breathless at the top. Sometimes, I'm physically tired. The problem, you see, is there is no washroom on the main floor. There's a toilet upstairs and another in the basement. I can proceed either up or down, but either way, I must climb stairs. Which brings me to my next item.

My father-in-law has agreed to advance Colleen a portion of her inheritance. We met with him a few weeks ago and explained our predicament. It was a VERY difficult conversation for Colleen who does not enjoy a healthy relationship with her parents. After way too much small talk, she laid her cards on the table:

We want to buy a home of our own. We have saved a considerable down payment, but it's not enough. We need more. We need help.

We have $100,000 of our own, but twice that amount would mean the difference between a mortgage that’s a hardship and one that’s affordable. It was the most difficult thing Colleen has ever asked for. I feel the same way. We don’t particularly like these people, but they’ve given us an inexpensive place to live for ten years. In their minds, we probably owe them.

I agree up to a point. It has certainly helped. They helped with Ivy when she was younger. They helped with the dogs. They even helped me get my own house ready for sale ten years ago. They have been a great help to us. But they have also provided a great deal of stress with their expectations and by virtue of their proximity. Neither Colleen nor I have ever been comfortable living this close to her parents. And I have never felt at home in this house. This is not my house. It’s not Colleen’s house. This house belongs to my in-laws. Larry wants me to remember that.

But anyway, he's agreed to give us some money. $100,000 was asked for. And so it will be given. But not without conditions. Of course, we're free to use the money as we wish, but Colleen was told the will will be amended to reflect the advance she'll be given. I expected that. What surprised me (but only a little) was that she'll pay in the end for all the fees and taxes and charges related to this transaction. Colleen's parents are really odd where it comes to money. Everything is secret. Everything is complicated. I wonder why they couldn't have offered the same gift to Colleen's brother and sister. Who can't use an extra 100 grand? 

My father gave his kids each $50,000 this summer with no conditions attached. It was a gift pure and simple. The idea was to help us when we needed help. Yes, there is a will. We’ll probably get some more when he and Mum are both gone. But Dad wanted to see us enjoy some of our inheritance while he was still around. Because he is a good dad, a generous dad, an unselfish dad. $100,000 seems like a lot. But Larry has a lot more money than Dad. And only HALF as many kids.

So we've been looking at homes on the internet. www.realtor.ca

Toronto is priced beyond the affordability of all but the very wealthy. Mississauga isn't much different. Further west is Oakville. That's where Colleen works, at a brand new hospital. But for many years, Oakville has been ranked among the richest cities in Ontario. Not very affordable for us. Further west is Burlington and Hamilton. This is where we hope to find our new home. Colleen would like to start a private therapy practice from home. And before I die, I would like to assure myself that she has a home of her own, and roots in a good neighbourhood.

No doubt buying a house will be stressful. A move will be stressful. Mortgage payments instead of rent, double what we're paying now. But Colleen has a job now. I think we'll be ok. I do. My prime concern is that we'll be close enough to the Queen Elizabeth Way - the main highway into Toronto - that a trip to Toronto General Hospital won't be too taxing.

My aging parents are another "prime concern." But that's a topic for another day.

***

Steady As She Goes

I’ve had some thoughts recently on my lung disease. It was first diagnosed in December of 2013. Yeah, it rather put a damper on our Christmas that year. At that time, I was told the Life expectancy rate is approximately 3-5 years from the date of diagnosis. Well, I’ve pretty much beaten those odds, haven’t I?

The disease has advanced quite slowly. It has allowed us to travel. We’ve been to Europe, the UK, Costa Rica, Dominican Republic, the American southwest, and two or three trips to Mexico. We’ve also been to The Rockies, as well as an ambitious motor holiday along the full length of Yonge Street – 1800 km from Lake Ontario to the Minnesota border at Rainy River. We’ve done a lot and seen a lot. And as the disease has taken hold slowly, we’ve had time to adjust. I remain hopeful that things will continue to progress at this pace. Slower would be good. Stopping would be best, although we’ve been advised not to expect that. The drug I’m taking – Ofev, has definitely shown itself to be effective in slowing the progression of scarring on affected lungs. I feel as though I’ve gotten worse, but maybe the drug is slowing things for me. I shudder to think what kind of shape I’d be in without it.

When the doctors tell you to “get your affairs in order”, at first you don’t know what to think. You can’t think. All you can do is worry. And I excel at worrying. After a while, the anxiety ebbs. Life goes on. But in the days leading up to a doctor appointment, the worries gain momentum. The appointment happens. It’s never good news, but so far, it hasn’t been terribly dire. Weeks pass. And again, the anxieties fade. They never quite leave your mind, but they do fade. I’m grateful for that. I’m grateful for free healthcare, free oxygen, free prescription medicine. I’m grateful for my Colleen, as we walk this journey together. But more than anything else, I am grateful for a condition that has advanced slowly enough for us to adapt to the changes. How dreadful it must be for those who suffer sudden misfortune that turns their world upside-down. How lucky we are. How lucky I am!  

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Follow-up Blog Post

We saw the doctor back in May. In a recent note to my respirologist and cc'd to my family doctor, here's what he had to say. Much of it was doc talk. I’ve transcribed only the sections I thought were comprehensible:

LUNG TRANSPLANT DISCUSSION:

We had a very detailed discussion today around lung transplantation. I discussed the assessment process and what it means to be listed. I then went over the perioperative risks of infection, bleeding, heart attack, stroke and primary graft dysfunction. I further went on to discuss the post-transplant period, which would involve multiple doctor visits, repeated blood work and bronchoscopies, and immunosuppressive medications. I discussed the side effects of PREDNISONE and CYCLOSPORINE in great detail. We then went on to discuss the long-term risks of infection, rejection, malignancy (including post transplant lymphoproliferative disorder) and chronic allograft dysfunction. I quoted a 1 year survival of 85 percent and a median survival of about 6 years in all-comers.

SUMMARY AND RECOMMENDATIONS:

In summary, Mr. Pringle is a delightful 59-year-old gentleman who has a definite diagnosis of idiopathic pulmonary fibrosis. Unfortunately, his disease has been progressing and in February he was started on oxygen and OFEV. Having said that, he continues to have quite a good quality of life.

We had a detailed discussion today around lung transplantation. His wife attended the appointment with him and certainly they seem to have a very strong relationship. I believe that she will be able to provide a lot of emotional support for him. Having said that, she is currently working full-time and so I have explained that if Mr. Pringle is interested in proceeding with a lung transplant, he will need to come up with a plan to have either 1 or more members of his family or his church (with whom he has a close relationship) provide formal support in the role of a primary support person. He will consider this further with his wife.

Although I think he is a bit too early to proceed with a lung transplant listing, it may not be too early for us to proceed with a lung transplant assessment, knowing that our wait times for assessments are between 6 and 8 months. Having said that, for the moment Mr. Pringle would like to hold off and just consider his options. He will call my office in the next week or two if he would like me to move forward with a referral for a lung transplant assessment. Of note, given his age, I would likely arrange for a coronary angiogram concurrent with his assessment so that if there are any areas of coronary disease, we can intervene with plenty of time before he were to get listed.

For the moment, I have not made any formal plans to see him in my Transplant Clinic, but he will continue to have follow-up in the ILD Clinic. If his disease is getting worse and transplant becomes something that we need to consider more seriously, then I would be happy to reassess things.

Dictated by: Dr. Shane Shapera

We're to see the doctor this Friday, July 6^th at Toronto General Hospital where I'll submit again to the now familiar battery of pulmonary function tests and then the six-minute walk. The results will no doubt show another diminishment in my respiratory health. I expect it. I am prepared for it. What I cannot seem to prepare for, or even accept, is the inescapable tsunami of medical care that will soon overtake me.

***

   

Change Is Gonna Come

I am nervous. My condition is worsening. I use more supplemental oxygen than I did a month ago. I've read of cases where the patient suffers a sudden downturn. It's actually not that uncommon. 

They're all so YOUNG!

Next Friday, I’m to see a doctor at Toronto General. The man’s name is Dr. Shane Shapera. He’s the medical director of the interstitial lung disease clinic and also a team member of the lung transplant clinic. Although I’m not absolutely clear of the purpose and goal of the appointment, I believe Dr. Shapera will put me through my paces, examine me and assess my suitability for the lung transplant programme. Maybe, he’ll put my name forward for inclusion on the Transplant List.

Now if you’re thinking it’s a simple procedure, this getting a new lung business, you couldn’t be more wrong. It’s anything but. If I’m accepted as a candidate, I’ll be expected to lose weight - probably twenty pounds or so. I will be encouraged (ie expected) to achieve and maintain the highest level of fitness possible given my current state of health. That will mean frequent and regular trips to the hospital for supervised exercise, and to submit to a battery of tests all designed to ensure the best possible outcome if a transplant becomes possible. Drugs will be prescribed with inherent and possibly unpleasant side effects. I’ve been told it’s a long, arduous, stressful journey. 

And, as a parting note, remember lungs do not grow on trees.   

Today's Thoughts

Friday. I had hoped for a relaxing day, but often it doesn’t work out that way. I did sleep late, though. It was my “pill” alarm that woke me this morning. I take my Ofev at 8:00, morning and evening, and when the alarm sounded, it woke me from a sound sleep. It’s become my habit lately, to rise at approximately 7:00. I guess I must have needed the extra sleep. It felt good to lay there with the dogs - Percy in Colleen’s place and Maisy at my feet. I opened my mouth and breathed deeply and slowly, listening again to the now obvious crackle in my chest. The noise is a characteristic symptom of my disease – idiopathic pulmonary fibrosis. I’m getting worse. I can feel it.

Some mornings are harder than others. It was a bit of a chore to complete my ablutions and take the dogs around the block. Oxygen helped, but still, I felt less than energetic. I felt like a tired old man. I was glad to get home again. I’d set the coffee maker before I left and the smell of coffee brewing greeted me as I re-entered the warmth of the house. The couch seemed to beckon me and, after removing coat and boots, I sat. Mindlessly, I watched an hour of television. The phone rang. It was Patricia from the hospital pharmacy calling to ask how I was doing on my medication. When I told her I’d experienced no side effects whatsoever, she was a bit surprised.

 

“You are in a small but lucky minority,” she said. “This medication is notorious. Nearly everyone suffers side effects. Diarrhea is the most common.”

Surely the road ahead will be challenging. Fortunately, it's relatively painless at the moment.

On May 11th, we're to see Dr. Shane Shapera to undergo "pre-assessment for lung transplantation."

I know he'll comment on my weight. I wish I weighed twenty pounds less.

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