Boy oh boy have I been very delinquent in keeping up with my weekly updates. So I have 5 weeks worth now. I will start off with the most recent events.
This week was a busy one. I had to do some lung stuff. Starting with the arterial blood gas. This always goes very poorly with a lot of pain over a good 1 and 4 – 5 pokes in my wrist trying to get the artery. In my chart it says that I have difficulty with this and need ultrasound to guide the needle as my artery bifurcates. It splits into 2 tiny little arteries. Like trying to thread a needle blind. So my guy was not confident in doing it without the ultrasound as the hospital was short that day. So they decided to do what is called a brachial draw. That is, getting the blood from the thicker part of the artery up around the elbow. Normally this is avoided with gusto but that day it seemed like they wanted to go for it, I have never in my life had that type of draw. It was bad. First attempt the guy hit my nerve and I went through the roof. Didn’t get feeling back in my hand for a good 36 hours. Second guy got the blood after about 2-4 minutes of digging in to get the artery and not the veins sitting above the artery. Phew done. it was as painful if not more than in the wrist. So. The result of this test showed that my blood contains 68% oxygen in it up from 57% last year. That is a direct result of trikafta.
After that nightmare of an afternoon I was treated to a lovely visit with my high school physics teacher and basketball coach from North Battleford Saskatchewan. It was a real blast from the past.
Then on Friday I found out that a fellow CFer and distant relative had passed away after a truly valiant fight. He was 21 years post transplant and a number of issues led to his liver failing. He was surrounded by his wife and kids and went to be with God. He is one of the most wonderful persons I have ever met. We have been going to the same clinic for the past 32 years and 4 years ago, one of his relatives found a genealogy line that led to my great grandpa and his great aunt. Such a small world and yes CF ran in that lineage as my Grandpa had lost a sister and brother to CF at very young ages. Allen was almost 57. He lived a truly amazing life despite having everything stacked against him from birth. He had a successful career in the oil and gas industry. He married and had 2 great kids. He lost his first wife Pam to cancer in 2010 and then found his current wife Melissa shortly after. He was so lucky to find true love twice. He travelled the world and worked in remote locations. He loved life and it loved him right back. He was one of the best and will be sorely missed by so many people. I will miss him greatly. He’s the kind of guy you just want to be around. makes you feel good.!! I’ll say my goodbyes this Friday.
Saturday we celebrated the 50th bday of my sister in law Traci with an afternoon tea. It was lovely. Sunday we headed out to camp for a week. The weather looks not bad. April has been awful for weather this year!. I called her an asshole when it dipped to -18 one day. Rightfully I might add.
Last week I had a sweat test. Back in the 70’s the sweat test was the definitive and only test at the time to diagnose someone with CF. In 1976 my chloride concentration was 120. What does this mean? See the below image. Wednesday my chloride concentration was 38. My body now reads as “possibility of having CF”. Anything over 60 reads as most likely to have CF. So now I have a body that may or may not have CF.What the eff! The trikafta has done this to me. Unfortunately I have all the lung damage and though my body is unlikely to have CF today, it does have 50 years of organ damage and other consequences of fighting a half century against a disease that should have killed me decades ago. So there’s that. I am absolutely thrilled to get this drug before it was too late.
On that note, I have to keep it real. As much as I am thrilled I am also crushed. My severe lung disease keeps me from doing all the things my body can now do. I am still short of breath, still need oxygen, still see stairs as the enemy, still dread climbing a hill, still need night feeds, still have to do all of my treatments, still dealing with my diabetes, still living as I did before minus a chest full of mucous. Trikafta has stopped CF from continuing to kill me. That’s the important part but unlike most of the younger cfer’s my life does not change. I feel better for sure but a new life is not my reality. So in order to feel true freedom from the grip of this disease, I will need a lung transplant. UGH! I don’t know when I will need one but I will at some point. Until then, playing most sports, going for a run, jumping, skipping, hiking will just remain a memory for me. It does make me sad. I spent many hours on the basketball and volleyball courts, on the baseball field or in the pool until CF took that away from me in my mid 20’s.
Bottom line is that I have not had an identity crisis as I thought I would be faced with. I remain as I was but feel better. It’s ok, I’ve made my peace. I DO NOT MISS COUGHING 24/7. I always said that if I only got rid of the mucous and the coughing from this drug that I would still feel like I won the lottery. I still feel that way. I am a lottery winner of the best kind. Adding on some more years to my life.
Ok up next the recovery from sinus surgery. I am 5 weeks out and I feel great. I can definitely breathe better. My 2 appointments with Dr. Mechor went very well. He is super happy with how it is healing. He did say that it was a mess up there. Lots of scar tissue, the mucoceles and a bucket full of mucous trapped up there. I have had intermittent headaches and pressure but nothing to complain about. I sleep better. 30 years ago was my 7th sinus surgery and back then recovery was a nightmare. The old procedure was to manually cut out the polyps as best as they could and then shove 2-4 feet worth of packing up the nose, which remained in place for 2 weeks. After 2 weeks it was pulled out of the nose and fingers crossed that the packing pulled out all the remnants of the polyps. It was awful. I had black eyes for weeks, couldn’t breathe out of my nose at all and the drainage was disgusting. I dreaded each and everyone of those surgeries and the terrible aftermath. So you can see that I came into this surgery expecting the exact same results. My surgeon tried to reassure me that I will,in fact, be able to breathe the same day, little to no packing will be used and I should be able to blow my nose the next day. I had my doubts big time. Well, he was right. It was a medical jackpot for me. I expected to be down and out for a very long time and after 3 days I was back to rowing. I feel very blessed and grateful for such an incredible recovery. That is not how my normal life has gone. After one of my surgeries back in elementary school, I had gone back to school after a couple weeks and at recess that same day, I took a puck to the nose. Rushed to hospital to figure out if we damaged the surgery but luckily I was ok. That’s what I mean about it being my normal. Bahaha. That same week mom made me my own lemon meringue pie and every morning for a week I would indulge. Cali also liked to snoop and would put her ear in my pie. Cracks me up to yell at her to get her ear out of my pie! The inspiration for my blog title.
Also that same week, sadly, my best friend had to put her pup of 16 years down. He was Cali’s best friend. They have been buds her whole life. They were the kind of friends that say hi and then do their thing on the walk but feeling happy to have someone else on the adventure. Like two friends who don’t need to entertain each other. But love being together. I told Carol that the pain of losing your dog is almost the worst pain of all. Some say worse than losing a friend because your dog has been with you your entire life and integrated into all your daily activities for their entire life. Mr. Kipper was a great dog with the coolest personality. He will be missed and I have shed my fair share of tears over his loss.
From surgery lets move onto the start of camping season. Dad and I spent weeks prepping the new trailer and get her ready for her maiden voyage. We organized all the cupboards and drawers, hung TV’s, sorted out the satellite, hung a mini closet in my room, stocked the trailer with the basics and set out for our first trip last weekend. Despite the shit weather we had a fantastic practice weekend. Found some things to change and now we are ready for the official start. We were supposed to be camping for Easter but Mother Nature decided to be a be-atch! We camp in cold weather but we don’t camp when we are in danger of freezing our water lines with lows of -18C for a week. So disappointing. We head out for 9 nights starting on the 24th. I have 65 nights booked from now until July 24th. I am hoping that I don’t miss an entire month of summer due to the smoke.
So that’s the Cole’s notes of my life over the last 5 weeks. I am looking forward to getting out of the city and into the mountains for the next 5 months. Still on lockdown and not going into any public places as COVID remains very high in my neck of the woods. I feel like a hamster on a wheel but at least I am still spinning it. The little things are the big things.
I turn 50 in exactly 54 days. A milestone I was NEVER meant to reach. So far it looks good.