Slow But Steady

Hello friends. I hope you're all keeping well. It's been a long time since I last posted here. Sorry, but I really haven't had much to tell you. Well, that's not entirely true, I suppose. There's been lots going on - LOTS! - but not much that pertains to my lung disease. I began this blog to share my IPF journey with you. I can share other happenings with you too, though, if you'd like. God, I miss our days of blogging, don't you? A few of you still blog. Some stopped for a while and have taken it up again. Remember the Glory Days? In some ways, it seems like centuries ago. At other times, it feels like yesterday. Have we known each other for ten years? Odd innit?

At the end of July, we saw our lung specialist at Toronto General Hospital. Dr. Lau was his name. He’s young and easy to talk to, but his muscles aren't quite as impressive as the first guy we met there. He’s a research scientist as well, and very knowledgeable. He told us that my most recent CT scan, done a few weeks ago, indicates a progression of the fibrosis on my lungs. (The first CT scan was done a year ago) He said it appears to be advancing quite slowly .. and that’s good. But he also confirmed that the scarring shows a “honeycomb” pattern consistent with the dreaded IPF (idiopathic pulmonary fibrosis) diagnosis ... and that’s bad. Other types of fibrotic lung disease, apparently, have more treatment options and better prognosis. The only sure way to determine if it’s IPF, is with a biopsy. We’re still undecided about that. Yes, it would confirm or rule out IPF. But how would that change anything? I’d still have scarring on my lungs. It’s still getting worse. My future is still completely unpredictable. Six months? Three years?

 

The doctor said a few things that have stuck with me:

 

“Put your affairs in order.”  Yeah, that’s the one that keeps echoing around in my mind.

“Make sure your family knows your wishes, in case you end up on a ventilator and can’t speak.”  That one has played itself over a few times as well.

“Some patients can go for a few years the way you are – but eventually ...”

 

“Come back and see us in six months. We’ll do another pulmonary function test and re-assess. We can also arrange for you to meet the lung transplant team. It’s too early, really, but they should get to know you, get you on their radar.”

 

“We can talk about starting you on the Esbriet programme. But I have to warn you. You won’t feel better. You’ll feel worse. Esbriet has been shown to slow the progression of the fibrosis, but side effects are nausea, vomiting, diarrhea; rashes from skin sensitivity to sunlight, and fatigue. Nine pills a day in three doses.”

 

But I feel fine, my friends. I do. I haven’t experienced any serious shortness of breath and I don’t cough very much at all. However, I understand that as the disease progresses, coughing and shortness of breath will be my constant companions. Portable oxygen is definitely in my future. We have a friend who has this condition. Frank lives in North Bay and has been a great support. He had a single lung transplant last Christmas. Unfortunately, his body is rejecting the new lung. He’s fine at the moment, but it’s a constant battle waged with drugs and hospital visits. It's a battle he cannot win.

 

I spoke with my friend Bob recently. I’ve been wanting to share my story with him, but I felt he had enough on his plate already. Bob has Stage 4 bone cancer. There's no Stage 5. I did tell him, though, last week. I’m glad I did. He was very supportive.

I have not told Mum and Dad.

It’s my hope that they NEVER know about it. I may have to tell them one day, I know, when the symptoms become too obvious. But right now, it's enough of a struggle for my parents to deal with Dad's physical infirmities and Mum's steadily advancing Alzheimer's. They don't need more worries. So far, I've told very few people about my diagnosis. My siblings all know. And my mate at work, Jimmy. He's the other engineer on my train. We've worked together for nearly seven years. I don't want everyone to know about my situation. It sounds odd, but I feel sort of special because of it. If I told the whole world about it, I wouldn't feel special anymore. Does that make any sense?

 

We took our dog, Percy for a haircut last Friday. While we waited, we had lunch together at The Canadiana Restaurant here in Mimico. We talked about our future, or whatever might be left of it. And we decided we should plan a trip away to celebrate our fifth anniversary. We've got some money in the bank and we might as well enjoy it. We’re going to Costa Rica in November. Colleen will make the arrangements. I’m hoping we can do it for $5000 or so. Later, we saw a movie. At 42, Colleen looks younger than her age. At 57, I look older. I cheated and bought a senior’s ticket at the theatre. It bugs me a little to imagine that some people see us not as husband and wife, but as father and daughter. I think the waitress at The Canadiana did. I am blessed to have such a pretty, young wife. She will care for me when I need it most. Hell, she cares for me now.

 

We drove to Burlington today to have lunch with Bob and his wife Darlene. They took us to Tucker’s Marketplace where we enjoyed nearly three hours of dining and conversation. We talked about my lung disease and about Bob’s cancer. He’s much further along the journey than I am. My friend has had cancer for about six years. He’s had chemotherapy once and numerous radiation treatments. He takes handfuls of pills, and morphine to control his pain. The cancer is in all his bones. Walking is painful for Bob. He takes very small steps and uses a cane.

 

We discussed my retirement plans and I asked them their views. Darlene said she reckoned she would work until it became difficult to do so. Bob wasn’t so certain, and didn’t offer much of an opinion. My brother Pat and his wife wonder why I’m still working if I can get a full pension. Colleen says I should work as long as I can. Jimmy, my mate at work, wants me to stay with him until he retires at the end of next year. I don’t know what to do. I know I’m tired of working. And I know I don’t want to work until I’m too sick to enjoy my retirement. So I keep plodding along. Maybe I’ll wait til after my next TGH appointment in February. I’ll know then whether my lungs are still getting worse and how fast it’s happening. I hope it’s not too late, though. I still have quite a few items on my Bucket List.

 

I sent a note yesterday to my siblings with a link to a video explaining the disease, and offering a glimpse into my future. So far, my ultra-religious sister Helen is the only one who’s replied. She could have said “Sorry you’ve been given this ticket to Hell.” But she didn’t. Instead, she sent a sermon:

 

I think about you often Dale !  I believe that God has allowed you to have this IPF, and he will use you if you let him. He has promised never to leave us and never to forsake us, so he will see you through this.  Our home is not here Dale if you believe that Jesus did what he came to do. Our home is a much better place where there is no pain, no suffering and no tears. Jesus told the thief on the cross that he would be in PARADISE with him that day. If God made such a beautiful world for us to live here temporarily, I can only imagine how wonderful heaven will be. It says in the Bible all of this is just stuff & will one day all rot away. We are to put our heart in treasures above where moths and rust are not.

 

Everyone will die... Death is the great equalizer of everyone. If we believe that Jesus died for us, our Father in heaven knows our hearts and when we die, takes us home. If we do not believe... that is the only unforgivable sin... And we will be eternally separated from our Father in Heaven which is the definition of death.
Born once, die twice... Born twice, die once. When you accept Jesus as your Lord, you become born again therefore you will never die.

 

I pray for you often Dale, that this will bring you closer to God. HE has a still small voice. When He talks to you...listen. This IPF is for His glory. He will use you to spread His word of his love...that is our purpose here. I love you so much Dale... But God loves you more !!!

 

It'll be okay Dale... Jesus had to suffer for us to have a place with him forever. He never said it would be without trials for us here but he left the Holy Spirit 4 us when he ascended into heaven. The instant you believe the Holy Spirit enters into you. That's how he will never leave us and never forsake us until that day that he takes us home.

All that to say, I feel for you Dale and not to minimize the pain and grief that you may have to face as well as  the rest of your family in the future but keep your eyes on the Lord and it will be OK.

Love Helen

“God has allowed you to have this IPF ... This IPF is for His glory,” she says.

I am a Christian man. I believe in God. I do. But I just cannot see, for the Life of me, how my slow death by suffocation can possibly offer anybody any glory. Thanks for your prayers, Helen. But unfortunately, your sermon did not provide me even a scintilla of hope. I try to live Life one day at a time and be grateful. Because some days, Hope is damned hard to find.

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