*Note from the editor: Meet Kevin, a 65-year old “Grampy” with Cystic Fibrosis! My first thought was: I bet he has some interesting stories to tell! Well, for his article Kevin submitted a delightful collection of interactions and hilarious anecdotes from his life. Hope you enjoy reading them as much as I did!*
#1 You have Cystic Fibrosis? Oh good!
After offering my business card to a nervous new cf mom: “I have CF, so if you have questions…”
I have often gotten the relieved response, “You have CF? Oh good!”
Nowadays, with the understanding of infection control, I meet new CF protective parents virtually – just an ole fella with CF, open for even embarrassing questions…encouragement, and life is good stories…
#2 You have kids? That’s amazing!…
With blessings… I didn’t know of…
I alone moved to work in Saint john NB on the exact day that my future sweetheart left her previous marriage in Fredericton NB. Years later, when I was waiting for my bride at the church altar, two beautiful kids showed up too. So, I placed a ring on each of their fingers too. Didn’t matter anyhow that I found out after, that the cf monster robs me of the ability to conceive those blessings. They were right here! and they adopted me and changed their names to Munroe.
With lots of love grit ‘n laughter, they grew into families of their own…with compassionate inlaws. Four Grrranddaughters…and Two Great Grandsons!
#3 What is it?…
A few years ago, a concerned young teenager cornered me.
Teen: ”Grampy!, you take lots of pills every time you eat,and your ‘sposed to eat like crazy… You do a bunch of (aerosol) masks with different kinds of medicines. You needa do therapy a lot and you go in the hospital for a long time sometimes.
I know it’s Cystic Fibrosis, but WHAT IS IT??”
Grampy: “Well, it is something I was born with, like you were born with blue eyes. The cells in all my hollow tubes and organs just create too much mucus. My stomach is hollow and all that extra mucus coats the inside of my stomach and tubes, and makes it hard to digest the food I eat. So I have to eat extra high calorie food, and the pills help break the food down so I can get the nutrients from it.
My lungs are big hollow organs so when there’s extra sticky mucus it can make it harder to breathe.. like when you get sick with a cold and feel yucky….so when I take masks, I breathe the medicine mist in and it opens the airways and loosens the mucus and then therapy helps me cough it out. If the mucus gets left there, it can grow stuff … like when you plant stuff like a pea, it grows…
So when I’m in the hospital, it’s to take stronger medicine to stop the mucus from growing nasty stuff. My nose and ears are also hollow tubes and….“….
Big blue eyes, put her hand up, like “stop!”..
Teen: “Grampy, I think I get it, I get it. I understand about CF, but if you say Mucus one more time… I think I’m gonna Barf! “
#4 Alternative medication container…
I was doing a virtual conference of adults with Cystic Fibrosis. As you may know, health matters can get embarrassing and worse. I encourage young people to laugh when they can. Beware: “Medication and pills should always be in kept their original labeled container” Or should they??
“Hi I’m Kevin 65!
When I was diagnosed at 27. The initial shock of taking 9 pills with me to have with my next meal, left me on a constant hunt for a simple pocket container to keep those enzymes safe till I needed them to digest my man sized meal.
The drugstore simplified their job by just slapping a label on a sealed bottle of 100 or 500 pills. Putting a bottle that size in this skinny guy’s pocket left me looking way too well endowed. And forgetting something like that behind raised suspicions eyebrows. So not wanting loose pills breaking about in my pocket, I bought smaller labeled bottles: drugstore swag… little pill boxes… Nintendo game cases.. hand sewn pill pockets… little change containers…. All of which excitedly worked but the lump soon grew to be annoying.
Then one day while waiting for a prescription or 10, my sweetie fiancée and me were perusing the shelves for something eye catching. Then Woah! I saw the ultimate idea of a container that could slip in my shirt pocket like a pen!
Kev: “Hey look Susan”
Sweetie: “No, it wouldn’t work, Kevin!”
Kev: “Sure it would, it would hold over a meal’s worth of pills”
Sweetie: “Kevin No! Forget it!”
Kev: “And it’s only a dollar something…”
Well, Sweetie had had enough, grabbed my hand and silently and instantly drug me out of that store like the last straw of a misbehaving child. Into the car, doors closed, put her warm hands on my cheeks, and said “Kevin, it’s for tampons!!!”
So now after thirty something years of marriage (Happy 36!) I’m happy and thankful for everyone, Sweetie protective wife… caregiving kids… grandkids…great grand kiddos. And a fisherman friend package repacked with enzymes in my pocket. Not a kid, or even a dog will touch the smell of those pills!”
Life is good! Blessings…
#5 Trikafta time…
So fast forward to today…
And many thanks to many many people, I now have a powerful medicine called Trikafta that works to correct the gene to create a normal action in all the cells that produce excessive mucus and has caused such significant damage. This will prevent further damage.
I’m so excited to have started this medication and looking hopeful and forward to have more quality “Grampy Time”!
Saturday Grammy was telling 7yo Jacob (who “helps” Kevin organize his inhalation meds, counts pills out for a meal, runs the compressor, and jiggles and sings with him doing therapy vest).
“Grampy is going to get a new medicine to help him be able to play and do stuff with you guys better!”
He got a concerned look and said: “What’s wrong with Grampy???”
Even if you feel crappy or tired…Kids always see your strengths!
#6 Nov 20, 2021 Trikafta Day2
Great gobs of gopher guts!…and this headache has been with me all day!
With any new medical procedure, previous brave pioneers, patients tested and documented possible issues or side effects. So thanks to those people who’ve tried and tested Trikafta, as they’ve documented the good with the bad: A few rough days at first with a “mucus purge” so I’m looking at this rough time as a comfort that the drug is working.
Kind of reminds me of all the hoops and hurdles I’ve dealt with in business for myself working down by the bay outside in -20 dressed in my down coat and wool layers. I just went troubleshooting from one mechanical issue to the next. Oh, how the dollars rolled in, and no one ever ever caught a nasty bug in those conditions.
But then there were the moments that humbled me, a customer sending a fruit basket to the hospital every time I had to go in for a tune up. A customer who chose to wait for me to get better instead of getting my competitor. My son telling me, “I can get that”! Seeing my beautiful daughter flash a check at me when she came out from delivering a bill, big smile!
Hearing one customer sarcastically tell me that another customer said about me “he charges me $1000 every time he waves”, and this client responded: “oh, but he’s worth it”!
With life together it wasn’t my business, it was our business. I was just the flunkey with the technical education, minor stuff when you get to sit down together with great food and laughter going around the table as we share the hilarious moments of the day.
yep, life is good, real good.
#7 Skip 20 years or so…
Decades after closing my business, and the day before Trikafta was approved, with covid crisis still looming, an old customer dropped in. We sat in the yard and exchanged stories and had good laughs and tears about how life is so good even when jumping over hurdles. We prayed about his heartaches too.
As he was leaving, he told me members of the Kings church were praying and my name came up and they thought I should have this envelope with $1000 in it. He was adamant I keep it. He was only fulfilling God’s demand. He/they gave me enough money I didn’t know I needed…to cover the copay of the Trikafta med that I didn’t know I was getting!
Blessings! …even before I asked for them! Thank You.
Life is good.
#8 Reality check…
The good old driving game. Susan’s Dad used to say “old age is all in your head: Eyes. Teeth, Ears…”
He would have liked what my new hearing aids picked up from the “back seat boys”…
“I spy with my little eye something that is white”.
“That car?”. “No”.
“The snow?” “No”.
“Grampy’s hair?” “Yes! Yay!”
after repeated ear issues…a hearing ear service dog…
Hearing life is good too!
#9 Playing in the sunshine and rain…
Feeling great with Trikafta. Last summer we figured out how to convert our Sonata car to ‘S-not-a’ car… It’s a camper. So as long as we’re doing OK, we’re camping!
“S-not-a” car could be found on beaches lots of times during the summer. We managed to travel, enjoy the outdoors, go rock hounding, and so much more during the pandemic. No more being housebound. No one bothered us. No people around to pass the ‘C’ to us. Glorious sunrises and sunsets with the beautiful water and shoreline vistas.
As long as we have our “life is good” philosophies then we’re ready to go.
Unfortunately, the car would become overloaded with “treasure rocks “ and we would have to go home: Do laundry, unload the car, Get Trikafta refill for the month, Reload
#10 Note to a friend dealing with lobectomies…
Hope you are bouncing back with renewed hope! I just want to say from my own experience, that the removal of part of a damaged lung is actually a great benefit. In my case, the healthy parts expanded into the cavity and I thrived without painful plural rubs.
I had the right middle lobe AND the left lower and lingula removed. Stabs of pain went away. They didn’t know I had CF then, nor did they know what to do then. Those major bumps in my road happened in the 70s, when I was 13 & 19 years old.
During Grade 8 I missed 5 months of school! In June, I was feeling fine, so, on the last day of school I went and got my report card. I dismally flunked every subject…21%…33%.. Except Health…I got 100%!!!
I’m an old fart now , yeah the CF sucks but I love doing my vest with my Great-grandchildren on my lap. Vesting vibrations and singing “Oh Canada!” or “Doo your ears hang low..” or “My ole fliver ain’t what she used to be…” We don’t sound as good as you and guitar, but we might have you beat in laughs and giggles!…. for now….
Hope you’re laughing pain free in quick time.
Bless you and the people on your path.
#11 New Hurdles…”mind over pajamas”
Walking with encouragement: My mailbox contained another (of many) cheque from St James the Less, Thank You for so much support and encouragement! This is humongous stuff & It sure has helped with everyday hurdles.
I had been so overactive with Trikafta that I needed hernia surgery! So I’ve been pushing with mind over pajamas, the last few days to walk at least a KM+ every day interrupted by ‘stop-n-talks’ with a concerned neighbor.
Eugene is my friendly gardening competitor. Susan has previously caught us measuring our grandchildren’s sunflowers and discussing the size of our cucumbers…. and now we trade embarrassing hernia stories.
Last couple of days, I’m being followed – Eugene joins me with a “I need a walk too!” And then he’s planning for tomorrow afternoon: “Come and get me for your walk”. I am just his speed! Anyone else wanna go for a short long walk?
Eugene knew my Doctor says 5-10 pounds is my limit for 6 weeks, so he would even lug my humongous encouraging mail. Thank you for the encouraging blessings…
May they be returned to senders infinity-fold and may you all be surrounded in smiles and blessings!
#12 As days became months, months became years and years became decades…
There has been a lot of water under the bridge since I was properly diagnosed. CF scared that blank out of me. Thankfully the loving earth mother I married had no intentions of changing her lifestyle due to a few logistic changes in our lives.
A few months after diagnosis, she gently and firmly stated she was going to our favourite Oceanside the next day. “I’m leaving at 8 AM, be in the car if you want to go.“ Then quietly sitting and holding my hands, she reminded me I didn’t have to be tied to an electrical outlet. I have puffers and she was pretty darn good at “clapping“ (physiotherapy). She left me sitting on the sofa to do my thinking. Of course, I was in the car waiting for her the next morning. We had a glorious day. That day we decided that CF is just a matter of logistics… “I can” and “I will” became “we can” and “we will”.
#13 It’s our business…
My daughter was quite a mastermind in our service and repair business. With a real knack for a whole new renaming of everyday tools and what to do with them. She knew about plus and minus screwdrivers, L wenches, and the clicky wrench, with the silver things. After showing her how to use a file to take the sharp burrs off metal, she went to work shaving the “cold parts” off.
I was a little confused when she asked for the local shopping mall… finally realizing she wasn’t asking to go shopping (…this particular time), but needed the big hammer, previously called a maul.
My Son had good advice for a smooth running business too. As we juggled funds for the restocking of estimated parts required, J noticed a particular expensive part was frequently required. “Let’s just get a couple hundred of them! You know you’re going to need them eventually.”
We need to eat too, Jamie.
#14 For the love of food…
With enzyme pills I’ve enjoyed my “Seefood diet” (…if I see food I have to eat it).
One fine day My son Jamie just about made me choke on my prescribed high calorie meal. The poor youngster has power with his words. With a glance at my decadent food, he innocently said: “I wish I had CF!” As I gulped on my bile to prevent a raging exodus of calories…all I could do was hug him and thank God for his vibrant health and quick vocal thoughts.
Without the benefit of digesting food adequately, I’m constantly asking. What’s for supper? So the grandies have picked up on that mindset offering to play restaurant…“I’ll make a Menu, Grampy, what do you want?” Oh, Tbone steak please. “T-bone steak? Uppercase or lowercase?”
Cooking / baking with kids is a lively experience too. Shake n bake chicken with a 6 year old who has to swing and dance a bag of raw chicken around the kitchen, testing the burst limit of the bag, while dancing to every shake…
Hilarious and Delicious!
#15 Another hurdle ‘n blessings…
So I’ve had to cut back on my little walks for a few days. My sputum got reddish-pink.
This is a serious feature with CF, so laying off all activities and even therapy is necessary. Thankfully, the pinkness has gone now. I’ll resume light therapy and see if the pinkish spitbits are done.
Kind of reminded me of when a sweet Grandgirl boasted with her enthusiastic excited voice, “I have Pinkeye!” Like it was something really pretty. Blessings! Kids n Grandkids make life so lively, even when ya gotta be sedentary!
Life is lively, and good!
As far as I see, and as I look back, I realize I’ve been surrounded by so many compassionate people including kids, family, and medical professionals, that all care for me like the angels they are. I am overwhelmed and comforted in the caring people around me. Then there are the people I don’t even know, that have been so helpful, yet go about their day with compassion. Then there’s the real Angels we can’t even see…but we have warm memories of.
You make Life…GOOD!! Blessings!
- Writen by Kevin Munroe
- Email: email@example.com