Looking back

Hello, my dear readers;

HOLY SMOKES!?!?

I am stirring the pot of memories when I write this. Some things you don't believe exist or have happened until you look at the calendar and wonder where 16 years have gone.

This year, on February 16th, 2025, I am celebrating my champagne re-birth Day...lungaversary... bahaha, I just added that word to the dictionary on my computer! teehee

For years I have looked online to see if there are any "In Memoriam" or looked into the Obituary in Ontario in February 2009. But, I don't think I am looking in the right places. I don't know anything about my donor. I stopped sending "thank you" letters a few years back. I mean, I don't want to send people letters if it's just going to upset them or tear them open and read the words I have written.

Imagine, scouring through hundreds of obits, to look for one, that might be the obituary that will explain a little bit about who they were, I mean, what was their favourite food, would it explain my sudden love of spicy foods? I mean I used to love the Wendy's Spicy chicken, but could never handle it. But now, I am eating ethnic foods from Sri Lanka that my co-worker makes for me. Imagine my surprise at how much I love the heat in their foods.

Firefighting has always been a passion... there's the heat again. Lol, I am kidding of course, not about fire fighting, but about the heat. Firefighting has been a passion since 1991 when Backdraft came out. "Let me go, Bull!" "you go we go"... yada yada

Moving on...

For 16 years I have tried to find a way to explore the avenues to finding my donor. As mentioned above, I really don't want to open up new wounds for them. I think that would hurt me more than anything else. I don't ask too much of my team in Toronto, I know that they can't tell me much, if anything at all, but I sure do wish there was some kind of statute of limitations, that after 10 years some information can be disclosed. I am not asking for names, just maybe how old they were, where they are from, how they died, for heaven's sake, a first name.

Crazy as it sounds, a lot of us have a morbid curiosity when it comes to the person who selflessly gave their life for us. Some of us suffer from some form of PTSD, and one hell of a case of survivor's guilt, yours truly included. No one really talks about the guilt you feel when you realize that for us to be alive, someone has to die. It's a feeling that no one prepares you for. Transplant teams don't talk about the afterthoughts, the feelings, the dream and the overwhelming feeling of not knowing if you are doing your new tenants justice. Are they proud of us for helping them live on in their honour, or are we just supposed to deal with this on our own?

No one tells you about how your family is going to feel. They have no problems asking you if you have a good support system, but no one asks them how they are coping with the changes of your transplanted family member. No one tells you about the PTSD that comes with your main caregiver. Where is their help? Where is their support, and where are the resources to help them? Not just transplant caregivers, but the ones who are there from the beginning, before the transplant, and before the changes.

These last few years, I have come to accept the fact, that my mission, my future, my legacy is to advocate for those who don't feel that they need to be advocated for. I never thought I needed to be that person, who was supposed to let things like this go. I feel the same way about First responders, all the things that they see, and they feel that they cannot tell their families, and feel that they can only speak amongst one another. You know I get that. Your peers will see that in you before you have the chance to reach out.

Some go blind and tell you to buck up, but that's not what needs to happen. We all need to take care of each other. I am fixing to create a foundation to assist transplant caregivers and patients to be able to get the most out of their transplant experience, on both sides of the operating room.

I am always looking for ideas to talk about with you all. But I do believe that this one will need to be discussed more frequently. If you love your family, stop treating us like delicate little flowers, and talk to us. Explain how much this whole transition has affected you, if it hurt you, we can work on it together.

Feel free to reach out if you have any ideas, or questions for how to cope with your CF, or how to cope with the after-effects of your loved one living with the transplant. Some people are open to communication, but please do not feel offended if it's not something you want to share with your family, or vice versa.

Feel free to reach out on this blog if you want some tips and strategies to work through some things that you don't feel your team is supporting you enough. I am sure with all our resources, we can work together to figure things out.

16 years of living my life with recycled parts, what an amazing adventure this has been. Thank you for following me today, I appreciate how much you support my blog and take the time to read my Rambling.

Be safe, drink plenty of fluids, and if it's cold where you are, stay warm.

Much love and appreciation to all

~Moi 🫁

New Vlog coming in Spring 2025
Image is TM

Also for anyone interested, William Byron won the Daytona 500 for the second year in a row, 

on my Lungaversary! 

#teamhendricks #axaltaracing #williambyron

#2025daytona500

HAPPY NEW YEAR 2019

Hey friends,

So we are 23 days into 2019, and I can't really tell you  much about what has happened... not too much!

I have rekindled old friendships, I have opened my heart to new friends, and connected with some old family with whom I haven't spoken to in years.  for no particular reason either.  Maybe I thought they didn't want to hear from me, seeing as the reason we kept in contact has left the physical world, on to better things.  Needless to say, it's a good feeling knowing these people are there.  It's my last connection to that side. Welcome  home you guys, Missed you!

Soooooo, there are 23 days until i celebrate my 10th Transplant Anniversary. 10 years.... 

Whaaaaat!

I never thought that it would go by as quickly as it has, it's insane how fast time goes after you hit 25.

Today we are being hit with day 2 of our snow storm.  There has to be at least 3 feet of snow out there and it's still falling y'all!  Take a look at this....

DAY 1: January 22, 2019

January 22, 2019

Calm before the storm

Beautiful winter sunset

 DAY 2: January 23, 2019

Driveway marker for the plough guy, or in our case
the BOBCAT guy!

This is so incredible, I love winter, I love being warm and snug in my home, with the fireplace on, wrapped in my warm blanket and sipping coffee out of my awesome mug, that I received as a Christmas gift from my friends Ange & Glenn.

On that note... it's raining...Oy!

Happy winter 2019 everyone! 

Loving you always

Ali

CF Adult Comfort Kits

Good evening my friends,

So, seeing as 2019 is a major milestone for me on more than one level, I want to share with you my current project.

This project is called the "CF Adult Comfort Kit"

This isn't to say that children aren't affected by CF, because obviously they are.  but it seems that everywhere we turn the kids get all the support.  CHEO is a great place, I had never had to experience the life lived by so many in those walls.  So all I know is the adult admissions process, and the fact that i have had to be admitted at the last minute.  Trust me, it's a shitty experience.

Adults are outnumbering the kids now, so i think it's time that we get some attention.  Here is my reasoning...

I will be celebrating my 10th Lung Transplant Anniversary on the 16th of February, AND i will be celebrating my 40th birthday on April 30th.  To say that this is a small feat , would be a lie.  Damn, i am working hard at keeping my lungs healthy, my kidney's are struggling, but it's a small price to pay, I have an extra 10 years where I wouldn't have had an extra 2 weeks.

This is just the beginning of many more wonderful years with my family and friends.  those friends who are in my life, are pretty much family now.  They stuck with us from the beginning, no questions asked.  So let's talk about these kits a little more.

Inside these kits we will hopefully have... wait, i never told you the magic number of kits... 50!  My birth year (40) and anniversary (10) years added together. Ok, on to the fun stuff...

Kits contain the following (hopefully)

- twin size quilts

- snacks including trail mix, candy (Swedish berries and fish)

- Ground Soap soap bars - Donation 

- Shampoo/conditioner

- Razors and shaving cream

- Tooth past, toothbrush & dental floss

- USB of a video greeting and music videos & music - Courtesy of Moi!

- Pillow case

- Slippers/socks

- Lotions (hand/body)

- Letter and words of affirmation and love and support.

- Puzzle books and notebooks

I know, this seems a little unrealistic, and I agree... somewhat, but until I know that the adults in Eastern Ontario are taken care of, then maybe one day, all the adults across the country will be loved and appreciated.  We are the ones who went through the drug trials, and such to entertain the thought that there would be a cure, or even a partial cure for us down the road. 

If you would like to send some supplies for my kits, i am open to any donation.  If you have an amazing idea to add to the kits, I am welcome to suggestions.  No suggestion is to little or too big.  I will provide an address to you if you want to participate in this great initiative.  

Special thanks to Krispy Kernels for providing some snacks for the kits, Ground Soap for the soap donation and for the possibility of 10 quilt donations from the Quilters Guild in Cornwall, Ontario.  you have helped to make this gift possible.  I can't do this all on my own.  i am counting on my friends and family to help me raise the necessary donations.  

This initiative starts today and I am hoping to have them ready for distribution on May 1st, 2019.

Love to all who can helps and love to all who want to but can only help by making a letter donation to the Adult who needs a little love.  these kits have to be created with love.  Imagine your loved one is being admitted to the hospital and needs some comforts of home, that maybe your contribution will make them feel loved, and admired.  I wouldn't be here without the sacrifices of those before me. like Dexter, Marc, the Richer's and so many, many more who never made it to their adult lives.

Thank you all, Love to all

Ali

Let the countdown begin...

Let the countdown begin...

What countdown you ask!
Well there are 2 amazing countdowns to be aware of.

Are you ready for this...

COUNTDOWN #1 - February 16, 2019

This is a monumental date, because on this day, someone I have never met gave me one of life's most precious gifts, most selfless act possible, and went into the history book for being the first Double Lung Transplant on the very first Family Day in Ontario.

If you haven't guessed, although I am sure you have, February 16, 2019 marks the 10 year anniversary of my Double Lung Transplant, that was necessary due to end stage Cystic Fibrosis.  I have my donor family to thank as well as my amazing doctors and nurses.  My surgeon Dr. Du Perron in Toronto, my fantastic Cystic Fibrosis doctor, Dr. Shawn Aaron. I also have to send a shout out to Dr. Ficara, because he was the one that suggested I get assessed for transplant.  Now if i can find him, thank him properly, he has no idea as to the outcome of his persistence.  Hmmm, how to find him!  lol

I will never forget that day, not only did i travel to Ottawa with my bestie Rebecca her man at the time Chris, who is now her hubby. Rebecca was with me in the clinic, when some comments were made by the new Nurse, Ena.  I told them that I wouldn't be admitted to hospital, over my dead body, Ena's comment was... "Well isn't that ironic". 

Rebecca and I looked at each other in astonishment.  I think that was my lowest point, and to have her there made it somewhat more tolerable. We then met up with Rebecca's brother Matt, who is like my little brother, at St. Hubert's on St. Laurent.  We drove up in a red Honda Prelude, me coughing and spitting my germs into an empty PEPSI can.  My beverage of choice. lol

*Please note that Ena, is the best nurse.  She has learned a lot about CF patients, how our minds work, and what we go through in one day, far surpasses anything that any one person would encounter in their lifetime. 

We kick some serious ass.

COUNTDOWN #2 - April 30, 2019

This day, this very amazing and wonderful day, will be celebrated with friends and family, it will coincide with the 10th Anniversary of my Double Lung Transplant, because on this magical day, I turn... wait for it... 

40

Aaaaahhhhhh, I cannot believe that I will be 40 years old.  A birthday I never thought I would see.  After being told by doctors to not expect to make it to 20, let alone 40. This is so awesome.  Every morning the beauty of a deep breath awakens my soul, the bright sun shining into my face reminding me, if the sun can come up every morning, I can sure as hell wake up too.

Everyday... grateful, is not just a word in my vocabulary, it's my meaning, my life, my salvation.

I welcome you all to embrace the days you have with love, gratitude and most importantly a sense of fulfillment, you woke up today, you took a breath today, you put you pants on one leg at a time.  But the most important of these things, is that your family, your friends and your loves will be able to hold you, love you and thank you for being here.  I now I thank you for reading my blog, for advising me on the simple things.  Knowing that I can hopefully help you, and help your loved ones gain insight in CF, transplant and living life in the moment.

We all have a role to play in the successes of others, we also ave a role to play in our failures.  Don't remember them as failures, they are lessons yet to be learned.  Wake up, energized and ready to learn something new about yourself, your friends, your family.  Believe in today!

With loads of love, I thank you!

Kisses

~A