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

Bronchoscopies, who knew!

Ladies and Gentlemen of the jury, the information i bring forward to you this day, will not only shock you into something you didn't know existed, but also prepare you for something a little more, out of the ordinary.

Bronchoscopies are a wonderful thing, after a transplant they can determine if you are "rejecting" your donor lungs. I had mine on the 24th of August, 2010. I took my time that day, waiting to get up to the office, and wait in the waiting room for them to tell me to strip down, and wear two robes. One for the front, and one for the back. I did what i was told to do, as always.

Usually my Bronch's are scheduled for the Wednesday's of my assessments, but this time around they had it on a Tuesday, and not just any Tuesday it was the Tuesday of Paige and Katie's birthday's. As you saw on one of my posts.

Anyhow. For some odd reason, the team up there, had me registered as having MRSA, which is not very cool. MRSA can be defined as the following:

Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.

Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community — among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.

I don't nor have I ever had MRSA.

So to my astonishment, I was whisked away into a room, a very isolated room, that was cold and not of the fun, light and brightness of the usual room I go to. The windows are closed, the blinds are closed and there is no one to talk to. You are literally ISOLATED! Not fun. usually i have the nurses to joke around with, and tell my funny stories to, but nothing. Then suddenly, there is a knock on the door, and there is a nurse there, in full precaution gear... face mask, gloves, hair net, isolation gown, booties and all the necessities for an IV.

My Port a cath isn't working properly, so I had to have a regular IV. They hurt going in, but the tingling sensation of the needle goes away.

As she has plugged me in, and prepped me with the mandatory throat numbing gargle, and inhaled solution, I am whisked away to the OR, where the begin the process of the Bronch.

First things first. My Doctor, Dr. Lianne Singer, the Dr. responsible for putting me on the list, is my Dr for the day, and i am so excited, I love her. She sees me, laughs, cause i told her the day before at clinic that i love getting Bronch's done. She thinks I am nuts, but I really do love them. She says to me, I'll be with you in a second, I need to change my iPOD song. She changes it to Elvis Costello's song called Alison; i am speechless, Dr. Singer is flushed.

I am given a sedative, as the numb my throat a little more, so i don't really feel anything, and I don't gag as they do it. I used to gag, then they sedated me. I don't know what they give you when they put you under, but they are awesome. I love the sensation of my body when it happens. It's gradual, but it's so relaxing. For an hour i don't know where i am, who I am or what i am supposed to be doing. It's like my kind of drunk, but without the painful side effects of a hangover.

I talk for a little bit, then they stick the spacer in your mouth, so they can guide the camera down your throat. I remeber the guide/spacer being put in my mouth, then... NOTHING! They cover your eyes, and then its just a matter of time, before you wake up in the recovery room, wondering, is it over already... can I do it again! Seriously, i am that weird.

As I come out of my stooper, I think, wow, this technique, this scientific method of dissection is going to help save my life. while they do the bronch, they take a biopsy of the lung, to see what's growing, and if there is any rejection going on. I think this should be done once a year in the CF clinics across the world. How much easier would it be to determine what the hell is going on in there. Just like my theory on Transplant assessments. They should be done as soon as someone's PFT (Pulmonary Function Test) are down to less than 30%. Before they are too sick to be transplanted.

I will get the results in about a week, and when that time comes, and those results come in, you will know, I promise I will tell you all, and you will know.

Until then, my fellow CF masters in crime. I bid you Adieu.

Tootles
Ali

I would like to know...

Good Evening all,

I was just pondering the thought, as to how many people became organ donors after reading Eva's blog and saw her documentary?  It would be interesting to see what the numbers look like now.  If anyone knows the answer, please feel free to enlighten me, about what your country's Organ Donation count is at.  How many peeple in your country are willing to give their body to someone else who needs it.

The question often brought to my attention is whether or not i am an organ donor.  And the answer to that is simple one word "YES".  I have even asked my doctor if my donated lungs, can then be donated again, should I move on to a better place form a car accident or something like that.  I still hve not gotten a response yet.

Nor have I heard from my donor family.  i really want to hear from them.  I want to learn more about my donor than I can possible imagine.  What did they do for fun?  I want to know what they thought of my card, and the fact that I brought their loved one to Vancouver with me.  Whoever gave me these lungs, has tobe very strong, and have a strong family.  Otherwise I wouldn't be here today.

I live everyday for me.  I don't take anythign fro granted, I try to give back as best I can.  I try to educate people on CF, but in small town, it's hard to get sponsore for events that try to raise money for a good cause.  If it weren't for all those donations to the CF Foundation, it wouldn't have given me the chance to live to this age.  At almost 31, I can't imagine what it would be like to not be here.

When I was sick, that's all I could thin about.  When I was going  to go, how much longer I would be here, and most importantly who is going to take care of my family, when I am not around to hold them close when they hurt. That was my job, and is my job.  But who will do it, when I am gone.

I will love long, but not forever.  The chances of living forever, doesn't exist.  I could have the lungs of a 50 year old woman for all i know.  But i am thinking not.  I am too excited and energetic to leave this world without making a difference.  Eva has her documentary, now it's my turn to make a splash.  Eva, this one's for you.

I am writing a book as you all may have seen.  and it's going okay.  Not as productive as I thought, but going.  i will keep you all posted as to my adventures in writing.  Wish me luck.

Love always
Alison

Hey Diddly Ho Neighbours!

What a week!

Wow, my friend Ashley got her lungs, and I have joined the local Gym. I am so excited to get back into training, you have no idea. I miss my gym; it has been so long since I was there that I can only imagine the state of health I am in now. As part of post-transplant treatment, we are required to get physical and do activities to keep our cardiovascular system up, and obviously keep our lungs in shape.

The gym I joined is amazing. Jason, the owner, is so awesome. He's got some great information on health and stuff. He's got his own blog; you should all check it out and join his blog. I read it for the first time today, and I was amazed. It's surprising what little you know until you learn. No, I am not being paid to talk about this blog, nor am I benefiting. Well, I guess I am benefiting because I am learning how to better care for my health through his blog, so yeah, I am benefiting. And I want all of you to benefit too. What's the harm in that, right?

Here is his link. If you don't like it, then you don't like it. I just thought I would share with you the lessons I am learning.

http://www.whathappenedtohealth.blogspot.com

Moving on....

My health is amazing, still breathing easy after 4 months, well, almost. I still can't believe that I got this amazing gift. I was featured in the local paper these past few weeks, one for my transplant experience, and the other for the GREAT STRIDES walk to help fund CF research. It was amazing. The turnout was fantastic, and I couldn't have asked for a better day. The sun was shining, and the birds were chirping. Not to mention the Loons and Mallards. I'll post pictures of the walk when I get a chance. What a great day for CF research. Our little Community here in Cornwall raised about $16,000 for CF research, not that bad for the fourth annual. Maybe now people will come out when they hear about it. Gotta love Facebook. I know I put it out there a few times. It was a great turnout, maybe about 100 people showed up.

Way to go, Cornwall. Thanks for your continued support of CF research. Bless the families who have just been diagnosed with CF, and those who continue to struggle with this illness. I will educate and advocate for CF until the day I die. My whole family was there, some of my old nurses, all my great Friends and what's really awesome is that Jesse Winchester, an Ottawa Senators player, and local from Long Sault (about 5 minutes from Cornwall) came out to support the cause. Thanks, Jesse, you made a lot of kids happy on Sunday.

Well, that's about it for now. I'll keep you posted as time goes by. My life is getting pretty routine. As I keep going to the gym, I will post how things are going. I have to lose some weight. I never thought I would say those words, but by golly, I have, and I must. Wish me luck!

Cheers

Ali

1st Post Transplant Clinic Appointment...

Monday, March 9th, 2009... what is so significant about this day, well let me tell you.

Not only is it my first follow-up appointment post-transplant, but it is also week 3 with new lungs. Yep, you read that right, 3 weeks with these wonderful lungs, and all I can say is "THANK YOU", Bless the family that did as their daughter wished.

That's all I know of really, that the person I believe donated my lungs was a girl. That is all I know right now, but when I find out more, I will keep you all posted as to how wonderful this person is, and will continue to be as long as I am alive and kicking.

So, about my appointment. As some of you may or may not know, I also have Cystic Fibrosis Related Diabetes (CFRD), which is also caused by the Cyclosporine and Prednisone that I am on. They tend to increase the levels of sugar in the body. The insulin I take, 7units every morning, is called Humulin N, and this type of Insulin peaks at the same time my medications do, thus allowing my sugars to stay at the normal levels for me throughout the day. Only one injection a day, and voila, CFRD taken care of. I have been pretty steady in the 6.4 - 7.9 range, which is where we want to be.

At my appointment today, I had the final stitches taken out where my chest tubes were, and my incisions look clean, and I can put Polysporin on the Chest incision now that it has cleared up from gross scabs. Yuck.

My weight is the same, and I think I might have actually grown a little. According to research studies, most people who get Double lung transplants tend to lean inwards and slouch. Well, my doctor, Dr. Chaparrow didn't recognize me because I was standing so straight and tall. Why would I slouch when I can actually enjoy the breath of air I am taking in? I don't know.

To my surprise, as I was waiting to do my PFT today, I ran into Emilie Joinette's mother. I recognized her instantly. I think I might have seen Emilie while I was leaving my clinic appointment this afternoon. Her mother said she is doing better, and she's getting frustrated with her treake, I don't blame her; it looked really uncomfortable. I hope we can all take a minute and just give her a little shout-out to the Grandfather for some loving. We're praying for you, Em, we are, I am praying extra hard.

So now that I mentioned PFT, I know my mother is cringing in her seat, dying to find out how things went. I know she's sitting there telling me to shut up and call her. Well, I'll do that, but I am going to put it up here, too. So please Momma, be a dear and love me, cause you are always on my mind when I go to my check-ups.

What they look for in Pulmonary Function Tests (PFTs), it's about the numbers here, not the %.
But we go with % in our house, so I'll give you a brief of both.


AVERAGE FEV (L) : 3.6 MY FVC (L) : 2.6 or 71%

AVERAGE FEV1 (L): 3.1 MY FEV1 (L) : 1.9 or 60%

FEV1 (Forced Expiratory Volume) in the first second:
The volume of air that can be forced out in one second after taking a deep breath.

FVC (Forced Vital Capacity):
The volume change of the lung between a full inspiration to total lung capacity.

Some background information in case you don't know what they mean. I didn't really know all the answers until I asked, so I saved you all the step of asking me. haha

I don't have any old numbers with me to go by, and I am pretty sure they weren't very good. I'll send an email to St. Mike's to get my last PFT results from them, and then in the next post, we'll compare the two. Pre and Post Transplant. That will be fun!!!

Some of my medications have already been lowered. I start my physio/rehab regimen on Wednesday & Friday at 10:30am - 12:00pm, here I will work on the treadmill, stairs and weights to keep my strength. Maybe I'll even consider going to the World Transplant Games at some point. Who knows!

Well, that's my day today. My Dr.'s, Chaparrow & Singer, are amazed at me, for all I have accomplished in the three weeks that I have been transplanted. Needless to say, they are shocked, just a little.

VIP MESSAGE: I saw my surgeon when I was leaving my X-ray today. He looked at me and said in his uniquely French accent, "You look fantastic. I can't believe how you're moving so well. You're not out of breath or anything. Stay out of the cold. You look great," I gave him a little hug and thanked him immensely for his excellent surgical skills.

Dr. DePerrot, you are amazing, my family are in debt to you for life. You have given me another chance to be me, and I can't thank you enough for your hard work. Kudos to the whole team, who worked on me, from the Nurses, Anesthesiologists, admitting ladies, to the cleaning lady (she always made sure I had towels), Thank you for your hospitality TGH, you're awesome.

Much love to all
Ali

Organ Donation / Thank You

To Whom It May Concern,
which is everyone reading this and more.

On January 15th, 2009, I had been listed on the Trillium Gift of Life Organ & Tissue Donation list, in a Category 2 state, which is he highest you can get for immediately needing lungs. I started my journey in Ottawa and finished in first place in Toronto, on February 16th, 2009,  on Canada's Second Annual Family Day.

God has given us a unique temple and fortress, which I like to call the Heart and soul.

It takes a really strong person to put themselves on an Organ Donation list, and an even stronger person to sign the card and register with the Ontario Health Government. You may have discussed with your family the option to be an organ and tissue donor, and that is a good thing, but it's more than just signing your Organ Donation card now. You must register with the Government; otherwise, it's useless.

I was lessened that on February 15th, 2009, the gift of my new life came quickly. I cannot thank the family of this strong individual, whom I know nothing about, for their strength in believing in this person's wishes to be an organ donor. Every day I breathe, I take an extra one for "him/her" for they will live on forever with me.

I have been following Parliament these days with their request to make Organ Donation mandatory unless otherwise stated for Religious beliefs, or you just don't want to, although I don't see why you wouldn't. Every human can save up to 8 others by donating organs; sometimes, even 75 individuals can benefit from one human donation.

If you haven't signed your card or talked to your family about it, I encourage you to do so. You must be 16 to donate your organs, unless you're a child, and then it's a little more complicated. I have signed my card, but now I must register it with Health Canada and OHIP.

If you need any more information regarding Organ & Tissue Donation, please visit www.giftoflife.on.ca. They have all the information you need.

I have some pretty amazing ideas slowly coming to fruition in the next few months, so keep your eyes peeled, all the people int he world need to know about these things, and I want you all to be a part of one of the best things you can do to keep another life going, even when you can't. If you donate yourself, you will also get another chance at life. You may not experience it in your life, but in someone who really needs to be here, to carry on your name.

I plan on spreading the word, sending a Thank you to all those who helped me, and the family who so generously allowed me to live with the lungs of their loved one. There aren't any words that can express my gratitude to them, their siblings and spouses.

I will have a more in-depth blog about organ donation later on.

Breathing Easy
Ali