Archives For Health

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 Eric’s Perspective:

Most chronic, invisible diseases are like an iceberg. Even once you think you’ve got a complete picture of the shape of the monster, you haven’t seen the largest, scariest part. CF isn’t something that just flares up sometimes and lets you live your life the rest of the time; it’s also not something that can be solved by living a healthy lifestyle. Some CFers may prolong the inevitable through exercise, organic veggies, and meditation—but regardless, the disease will have its day. There’s no beating CF, no remission, no prevention, no cure. It seeps into every second of every day of your life and dictates every decision you make, from work to relationships and everything in between.

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If you’re lucky enough to find yourself in a supportive relationship as a CF patient, you’ll see that your disease drives most of the major decisions you make as a couple. You and your partner will make decisions about jobs, money, home, children, pets, vacation, and just about everything else by accounting for CF. 

Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world. And when the right person comes along, they not only give you a reason to fight all the harder but help you with all of the many everyday tasks required to stay healthy and breathing. I was blessed to find Marissa, an unbelievable loving, caring, prepared woman who carries my heart, gives me hope, and takes care of me when I need the extra help.

Though it may seem impossible, CF has a positive influence. You learn to ignore the unimportant stuff and the judgment of “successful” couples and let go of visions of a “perfect” family. All of the decisions that other couples make easily become major turning points for a couple affected by CF, so we put a lot of thought, planning, communication, and sharing into our choices. Honesty is a given because a lot of simple things can be life or death.

You spend a lot more time together than many young couples, because of a) you’re stuck in one place doing treatments/at the hospital/tethered to your oxygen, and b) you’ve learned to truly appreciate the time you have together.

Every day is a reminder of life’s fragility, between the infections, hemoptysis, and gasping for air during vicious coughing spells. Having to consider the implications of an incurable fatal disease also forces you to recognize and be grateful for the time you have together.

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“Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world.”Eric

CAN YOU SEE ME NOW

May 16, 2017 — 1 Comment

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You didn’t cause it. You can’t cure it. You can’t avoid it. You can’t ignore it. You can’t control it. You try to manage it while concealing it from the “normal world”.

Cystic Fibrosis (CF) is often called the invisible disease. Invisible illnesses are conditions patients have that are not obvious when looking at them. People with invisible illnesses face a lot of prejudices. Accused of faking, lying or exaggerating they are often misunderstood.

“Just because you cannot see a person’s illness doesn’t mean they don’t have one. Someone may look “OK” when they really are not. Invisible illnesses often have no cure with patients having to take medication for the rest of their lives to help control and manage their symptoms.”

Take a look at me for instance, coming from an outsider’s point of view. If you saw me walking down the street:

He was walking with a group of friends when I spied him. I noticed him immediately because of his short stature. At first, I thought what is this young boy doing hanging out with these older kids. The closer he came I realized that he wasn’t as young as I thought, in fact, he was mature and probably the same age as his friends.

They seemed very comfortable with one another laughing and joking as they sauntered along. He had a presence and seemed to have no problems keeping his stride even though his legs were much shorter than his friends. Little did I know at the time that he was a warrior; born with cystic fibrosis he challenged life on many levels.

Other than his size I had no idea that he was struggling just to breathe. Living with an invisible disease you quickly learn how to compensate. No one wants their disease to own them. As I watched them disappear down the road an old lyric came to mind.

You can’t judge one by looking at the other.

You can’t judge a book by looking at the cover.

Oh can’t you see, oh well you misjudged me.

I look like a boy, but I have C.F. undercover.

You can’t judge a book by looking at the cover.

There’s a story behind every person, a reason why they are the way they are. Think about that before you judge someone. There have been times that people have doubted me when I was not well. I’ve been told, “you look alright to me, what’s wrong with you? What’s your problem?” What they don’t understand is that they’ve got it all backward; I am not well, rather I am faking being well.

Before my lung transplant, I frequently had chronic chest pain caused by excessive coughing. Coughing was my body’s natural mechanism to try and rid my clogged lungs and airways of thick sticky mucus. Coughing helped to relieve the tightness living inside my chest. At times it felt like as if a slippery serpent was wrapping its scaly body around my lungs, strangulating and constricting my breaths. The wheezing that would escape from my lungs would be a hiss of a rattle.

The cough woke a fiery dragon, burning the lining of my lungs. If that wasn’t enough to suffer through, my stomach muscles would feel like a punching bag. The sheer pressure of coughing weighted my shoulders down and caused a deep stabbing ache between my shoulder blades. This is how I would start my day, in constant pain. I hid in the pain, showing no outward signs of the torture I was battling. The physical pain was hardwired into my system; I simply faked it pretending to be well all the time.

I appear as I want you to see me. I paint on my ‘I’m OK’ face every morning before my day and walk around with a smile, but the truth is that I am in chronic pain, always struggling, but you will never see that because I do not want to appear in that light. You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.

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The only person who could detect I was getting an infection was my Mom. She could see through my smoke screen. She by-passed the “I am fine mom, don’t worry” or “No, we don’t need to waste our time going into clinic the team isn’t going to find anything.” Her radar was incredibly accurate; before I knew it I would be in the car heading for the hospital to be admitted for a two-week course of heavy duty intravenous antibiotics.

With breathing restrictions, physical activities weren’t always easy for me.

There have been times when I needed oxygen 24/7. The sheer act of walking was a major task. I used my disability parking permit when I was out. Several times I returned to find handwritten notes tucked into my windshield stating that I abused the system. Nasty little sentences slamming me for misusing a disabled parking space. Why would someone as young and healthy as me require a disabled parking pass? In fact, I remember once coming back to my car only to find a note which read: “Someone in their prime age, has no use to abuse a benefit like that. You should be ashamed of yourself”.

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Many of those living with an invisible disease’s can relate with this experience;  even though you know you’re sick, you know as soon as you step out that people will see your lack of a wheelchair or crutches and do a double take of the handicapped spot you’ve parked in.

Yet the truth is that about 96% of disabled people have what are called an invisible illness. Because they’re invisible, people assume we’re faking all the time. The scariest thing is that many painful chronic illnesses go without acknowledgment or recognition from society, even disability circles. It can even get to the point where the illness controls that person’s life. When it’s such a major thing to that person, it’s not helpful when people dismiss it as a fabrication.

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“I didn’t realize disability had an age limit… someone should really tell my body that.”

Thinking on this topic, yet another painful memory floats up inside my head. I was learning how to drive. It was a hot humid summer night, my older brother Chris had taken me out for a lesson. We had stopped at a McDonald’s for ice-cream. Returning to my car I saw a woman make a gesture to her younger daughter regarding my size and the fact that I was driving. She openly pointed to me, motioning her hands to emphasize my small stature. While she was mocking me behind the wheel she was laughing. Not only did this make me feel disrespected it also made me mad. I secretly wanted to go over to the woman and tell her how insensitive she was. I wanted to educate her about CF and tell her how fortunate her daughter was to be healthy. But instead I got into my car and drove away. This memory sits with me. The worst thing you can do to a person with an invisible illness is, have them feel like they need to prove how sick they are. 

Depending on the mutation of the gene, Cystic Fibrosis can play a large part in children’s growth. Ciliated epithelial cells in the person that have a mutated protein lead to abnormally viscous mucus production. The poor growth in children typically presents as an inability to gain weight or height at the same rate as their peers and is occasionally not diagnosed until investigation is initiated for poor growth. The causes of growth failure are multifactorial and include lung infection, poor absorption of nutrients through the gastrointestinal tract, and increased metabolic demand due to chronic illness.

Nutritional failure in cystic fibrosis is multifactorial. Malabsorption of fat, protein, and fat-soluble vitamins is a result of insufficient production of pancreatic enzymes, which can be exacerbated by bile salt abnormalities in the presence of concurrent liver disease. Progressive pulmonary infection can lead to increased work of breathing, reduced appetite, and increased caloric needs from inflammatory catabolism. Other factors that affect nutrition include cystic fibrosis–related diabetes mellitus, altered motility of the gastrointestinal tract, and small bowel bacterial overgrowth.

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Pancreatic insufficiency results in malabsorption and maldigestion of nutrients and fat-soluble vitamins. In fact, cystic fibrosis derives its name from the cysts and fibrosis noted in the pancreas of patients with the disease. Pancreatic enzyme replacement therapy (PERT) and optimization of nutritional deficiencies can prevent growth failure and improve other outcomes in patients with Cystic Fibrosis, including quality of life, resistance to infection, and chronic lung disease, which can lead to longer life expectancy. The type of the genetic mutation causing cystic fibrosis determines whether a patient is pancreatic-sufficient or pancreatic-insufficient, although approximately 85% of patients are pancreatic-insufficient by the age of 1 to 2 years. Pancreatic sufficiency in the setting of Cystic Fibrosis is a risk factor for recurrent pancreatitis, and recurrent pancreatitis can often be a presentation for the diagnosis of cystic fibrosis

CF has me forever ensnared in a childlike body. Short stature, thin, I will be the eternal kid due to the mutation that prevented my growth. My body wasn’t getting enough nutrients at the time I hit my growth spurts and puberty. Being in my body isn’t always easy. Even though I am a grown man I struggle to live life as “normal” as possible. It’s made daily tasks a challenge as well I feel like I’ve missed out on parts of life. As I journey throughout life I’ve learned to adapt. Blend in and even though what seems like a simple task I have taken on the challenge to overcome it.

Living with an invisible illness, it’s difficult and often pointless to try to explain to someone who has no idea of the daily struggles you face. Feeling the pain, feeling unwell, feeling awful on the inside whilst looking perfectly fine on the outside is a hard act to keep up. Putting on a brave face for everyone wears you down. There are many forms of invisible illness other than CF. The invisible sufferers include Anxiety, Alzheimer’s, Chron’s, Depression, Diabetes, Epilepsy, Fibromyalgia, PTSD and many different kinds of Cancers.

Just because you can’t see it, doesn’t mean it doesn’t exist.

We learn not to talk about it! We’ve learned not to talk about our illnesses. Out fear out of disbelief, patronizing phrases or yet another unhelpful answer, and because we’re sick of being made to feel over-dramatic as if it’s all in our head.

We need someone who’s willing to listen. When I say listen, I mean really listen. Not give us answers to make us feel better at the time or daft answers that, while I’m sure are said to be helpful, only make the situation worse. We just want a friend who’s going to say ‘I’m here for you’ when we need them most

“Ask questions before you judge me. I’m happy to share my story and want to educate others. My challenges/pain is real so if you don’t understand, get to know me.”

The best thing you could say to someone with an Invisible illness is to tell them “you believe in them”. Believing is acknowledging you understand what they are going through. Today we have no reason to judge anyone as we don’t know what their story in life is. Judging a person does not define who they are. It defines who you are. So remember to keep an open mind.

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We may not look sick, but turn our bodies inside out and they would tell different stories.

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BREATHE

May 8, 2017 — Leave a comment

IMG_8923INHALEEXHALE, now again INHALEEXHALE, and REPEAT, it’s easier said than done for some. Breathing is an involuntary act which most people do not think about and take for granted. To someone with Cystic Fibrosis that breath you just took would be a gift!

Many people have asked me what’s it like living with Cystic Fibrosis, does it “Hurt”? I’ve never given a clear answer as there isn’t one. I can describe what Cystic Fibrosis is to me, or how it feels like to me. But you should know, there isn’t just one kind of CF gene there are over 1,900 different types of mutations of the gene. Some are common and others are rare and found only in a few people. Certain types of are associated with different symptoms of the disease. For example, some mutations are more likely to affect the gastrointestinal tract than the lungs. However, knowing an individual’s CF mutation cannot tell you how severe that person’s CF symptoms will be.

If you’re new to the scene of Cystic Fibrosis let me enlighten you:

Cystic fibrosis is a serious genetic condition that causes severe damage to the respiratory and digestive systems. This damage often results from a buildup of thick, sticky mucus in the organs. The most commonly affected organs include the lungs, pancreas, liver, and intestines.

Cystic fibrosis affects the cells that produce sweat, mucus, and digestive enzymes. Normally, these secreted fluids are thin and smooth like olive oil. They lubricate various organs and tissues, preventing them from getting too dry or infected. In people with cystic fibrosis, however, a faulty gene causes the fluids to become thick and sticky. Instead of acting as a lubricant, the fluids clog the ducts, tubes, and passageways in the body. This can lead to life-threatening problems, including infections, respiratory failure, and malnutrition.

In my case, the mutation I have has affected my respiratory system, nose, hands/feet, brain, reproductive system, bones, pancreas, kidneys, gastrointestinal tract, and exocrine glands. So to make it clear CF doesn’t just affect your lungs, it can have an effect on the entire body. In other words, Cystic Fibrosis is a drawing of the straw kind of life.

May is Cystic Fibrosis Awareness Month!                                              

Throughout the next few posts, we will journey into the cause and effects CF can have on the body and personal life. Be sure to check back in this month for more interesting posting regarding Cystic Fibrosis.

But first, let’s try an experiment a challenge if you want to call it that. This simple exercise will give you a feeling of what it’s like to breathe like me or someone with CF.

The Challenge: Obviously it is very difficult to experience the full range of problems encountered by people living with CF, like chronic shortness of breathconstant coughing, and debilitating fatigue. It is not actually straightforward for most people with CF as the build-up of mucus in the lungs means that less oxygen is available, which causes problems with breathing normally. However, by breathing through a narrow straw, you can get some sense of what it feels like with reduced lung function. This is amplified during intense moments when breathing is a struggle such as a heavy coughing fit. There is no way for anyone to know what it truly feels like to be another person, this is one of the closer experiments to experience what it’s like to breathe as someone with CF. It’s very simple to do and there are only a few steps.

WARNING: At any time you feel light headed or extreme discomfort, STOP! 

  1. Find a medium sized drinking straw, something you would find at most restaurants/bars the longer the better, not a straw that has a larger diameter. The effect will not be as intense.

  2. Stick the straw between your lips (make sure there is a good seal around the straw and your lips), plug your nose and breathe through the straw for 60 seconds.

Several seconds in you might not think it’s so bad, but then around the 25-30 second mark, you begin to consciously think about the lack of air pouring into your lungs. Around the 35-second mark, you wonder if it’s almost over. By 60 seconds your lungs are beginning to panic a bit and your brain is screaming that you should release your lips from the straw. People with CF don’t get to stop; it’s why each breath seems so important/valuable. There can be days it feels like it takes everything just to breathe but instead of panicking we have to move forward and remind ourselves to breathe.

Describe in one word how it felt to breathe through the straw, now challenge your friends.

With that one word, I welcome you to post your response of the straw experiment please take photos of you and your friends during this moment and post on your social media account allowing others to be educated of your experience. Use the hashtags #strawchallenge #cysticfibrosisawareness #fight2breathe #Cysticfibrosis  #CF

Now imagine having to cope with that feeling when you are climbing the stairs, running for a bus or in the case of a child, just trying to keep up with your friends while you play.

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If you didn’t find it challenging enough, try climbing a flight of stairs, walk around the room for a while, include some kind of everyday activity, jogging in place for a minute. All while breathing through the straw with your nose pinched.

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Meet Devin Featherstone, Devin is a good friend that has been doing his part with Cystic Fibrosis Awareness. He accepted the straw challenge while hiking up in the mountains. Take his word for it”This Sucks”!

The straw challenge probably is the closest activity to experience what it’s like to breathe and live ith CF. Breathing isn’t the only challenge we CFer’s have to face and live with. There’s depressionanxietyscene of lonelinessstress,  painbad cough,  infections,  medical treatments, and nutrition just to mention a few.

I’ve experienced my challenges with all of the above symptoms. I have faced some really difficult times living with CF. Even though they may seem like dark times at the moment, I try and look at them from a positive point of view and transform them into lessons. Some may leave scars; scars are but evidence of life, scars are not signs of weakness, they are signs of survival and endurance that we have fought for something we wanted in life; LIFE IT”S SELF. I’ve started to learn to use my scars to educate others that there are ways to heal, to live, bring awareness.

Through the completion of each survival, I gain a lesson that I hope to educate others with.

I’ve walked in the darkness so that others may see the light.

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HERO-AS-SELF

April 19, 2017 — Leave a comment

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Have you ever wanted to be a Hero, what is a Hero these days anyways?

I am sure if you ask around you’ll get some interesting answers.  As the world has evolved the definition of a hero has changed.  The dictionary defines a hero as “a person who is admired for great or brave acts or fine qualities”. Examples of heroes range from mythological figures, such as Gilgamesh, Achilles, and Iphigenia, to historical figures, such as Joan of Arc, modern heroes like Florence Nightingale, Gloria Steinem, Martin Luther King Jr., Mahatma Gandhi to fantasy fictional heroes including Superman and Batman.

To a transplantee, a Hero is their organ donor. I know in my eyes this is true, two separate individuals saved my life allowing me to continue my place on earth with borrowed time.  I admire them as does my family and friends for the brave and unselfish gift they have given me. My organ donors who had no clue who I was, gave me life! Wouldn’t you be proud to know when your life has ended you’ve given the chance for life to someone to begin theirs? Passing the light of life on!

I raise the question as April is National Organ and Tissue Donation Awareness Month and it also coincides with spring. To me, spring means life, new growth, and new beginnings. Speaking from a transplantees point of view, that’s exactly what my transplant has given me. A LIFE! A life that has allowed me to grow, experience new adventures and beginnings that I never even thought would have been possible.

You used to be able to register as an organ donor on your driver’s license however this is no longer the case. The best way to check if you’re a donor is to look on the back of your new Ontario health card (if you still have your “red and white” health card maybe it’s time to update just for this reason), on the right side in small print, it will read “donor” or “donneur” in French. If it doesn’t say that, you’re not registered.

” Yes I am an organ donor, A guy I went to high school with got a liver transplant and it changed his life 100% and as I saw a Facebook post of his which explained why it’s so important”.

You may ask yourself why Ontario switched from using a driver’s license to our health card.  Not everyone has a driver’s license, whereas a health card is more practical. Paper donor cards are no longer valid you now need to register with a provincial agency. You should also tell your family and friends of your wishes. By telling your friends, you are allowing them to support your family when the time comes and the support is most important. A lot of organ donors are lost due to lack of communication about your wishes.

My personal experience with organ donation makes relating a lot easier for me. After undergoing two double lung transplants, Organ Awareness is an incremental part of our family.  This very amazing selfless gift has changed our family dynamics.  Moments that never would have been possible are now memories.

It’s allowed me see my older brother become a father to two beautiful girls. My middle brother and I have become closer, making him stronger.  We share our thoughts and know that we always have one another to talk and listen to. My twin sister has overcome her own challenges and is now a teacher. Most important our twin connection is very much alive.

My mom and dad have been able to see me surpass my life expectancy with Cystic Fibrosis.  They have been able to see their youngest son live his dreams, become stronger but most important it has allowed them to see me transform from a boy into a man. Something that is very special for a parent. This is especially important knowing that when I was born the life expectancy for CF was 16 years old. It has given me the chance of making many special and important connections with so many people thus enriching our lives.

“An organ donor? Of course, I am! Our family has experienced and had been inspired from transplantation. We were ALL given extra time on both occasions. Without living such experiences, I might not have been able to see the beauty, love, life, and happiness that one act creates. I would be happy to do as such for another family”.

By registering your consent your donation decision is recorded and is made available to the right people at the right time, and is shared with your loved ones. When you register your consent to donate organs and tissue, the information is recorded by the Ministry of Health and Long-Term Care. When needed, The Trillium Gift of Life Network will request confirmation of your consent to donate organs and tissue through the ministry. It is the Trillium Gift of Life Network’s practice to reaffirm consent to donate with the family. In almost all cases, families honor and respect their loved one’s donation decision if they have evidence that it’s what they wanted. So, it’s important to register your consent to donate so that your family can be advised of your decision.

Throughout my life, I have been able to see both sides of the organ donation journey from the giving to receiving. To personally know what it’s like to be on the other side of the fence is just as remarkable. Any loss of life is a dark moment, but to know you have helped bring light back into another person/family’s life, can be a gift itself. It can help bring light back into the very dark grieving moment you’re in.

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To think your heart may have saved a father with congestive heart failure allowing him a chance to see his daughter get married, enjoying their special dance before she begins a new chapter of her life. Or the freedom you could give a young boy that needs a new kidney, dramatically transforming his life from being a prisoner to his dialysis machine to living a normal life. You would allow him to grow up as a regular boy no longer missing moments with his friends and family because of his illness.  

Imagine someone who is blind, suddenly being able to see for the very first time of their life. Visually explosive their first sunrise will be forever engrained in memory. Not only do they feel the soft gradual warmth of heat dancing across their face, but now engage in the full experience of a sunrise. As the darkness surrenders to light transforming shadows into actual objects. Glowing amber hues of gold and orange playfully mix into brilliant pinks and purples slowly folding away the blues in the sky, as if the sky is a sea of cotton candy. As the sun begins to rise kissing the horizon slowly away till they meet again for next day. The fresh smell of wet dew as it slowly evaporates into the air. They are in awe of the gift that has allowed them to see the world, to experience colours and light. No longer living their life as if their eyes are closed but now opened. Finally, they can cross off watching a sunrise from their bucket list.

“Yes I am a donor, I would be honored if I could die in a way that allows others to live, to have more time. I feel that it is owed for a variety of positive and wonderful reasons”.

With the increase of organ awareness and education more of these stories can be written and shared. By having more people become organ donors the gifts of life increases. You may now understand why we as transplant recipients call our donors Hero’s. They not only save our lives but grant us new chances that may have never been possible.  

Today, in Ontario, there are over 1,528, people waiting for a lifesaving organ transplant (As of December 31, 2016). This is their only treatment option, every 3 days someone will die because they did not get their lifesaving transplant in time. I myself was almost part of that statistics of being one of the people that didn’t get to see the next day of their life.

The year 2002, I was in end stage Cystic Fibrosis at the age of 16 years young, having signed a DNR (Do Not Resuscitate) as I was told: “Living on a Life support isn’t living at all”.  As much as I didn’t want to face the facts that my life was hanging on a thread it was right in front of me. My lungs could no longer keep up, they were failing from the inside out.  I would cough and vomit blood daily from my lungs. I was drowning from my own body fluids. As hard as my body was fighting it was rapidly becoming a downhill battle!  As I clung to life, I slept – my energy totally depleted. I barely had the strength to put on a smile when visitors came to see me. My only hope of survival was a lung transplant. I needed a hero to step forward into my life.

Let’s talk about some facts here in Canada regarding organ and tissue awareness, 31% of Ontarians are registered donors. That’s 3.7 million out of an eligible 12.1 million. 90% majority of Canadians support organ and tissue donation but less than 20% have made plans to donate.

Just to make it clear your current or past medical history does not prevent you from registering to be a donor. Individuals with serious illnesses can, sometimes, be an organ and/or tissue donors. Each potential donor is evaluated on a case-by-case basis.

Where is the missing connection, is it education on the awareness of organ donation or is it the confusion of becoming a donor? I recently asked my family and friends and the circle around them a few questions.

The questions were:

Are you an organ donor?

If yes why so, more importantly, if no why not?

Are you in a room with other people? Can you ask if they are an organ-and-tissue-donor?

And lastly, do you feel there is an easier way to have people register?

My inner circle all answered Yes they are registered organ or tissue donors.  As the question was spread out through the middle circumference of the circle there were more mixed answers.  Some answered with, I am not sure how do I find out? orNo, I’ve never thought about it“.

It was clear to me that my personal experience influenced the decision of my inner circle.

Throughout the post, I’ve shared with you some of the people’s thoughts on becoming organ donors!

” Dam straight I am an organ donor! I’d rather know that other people live because of these useless pieces of flesh. I remember once hearing someone talk about how precious our bodies are, but we are like cars. You taught me that. If I can fix another person by something I don’t need, super!”

Out of the individuals, I had asked organ donation affected them in different ways.

It never ceases to amaze me that my personal journey has encouraged others to become an organ donor. It’s a network of strangers trying to help a community of people they do not know and will probably never meet, so others can live a better life.

Fun Fact, did you know ONE donor can save up to 8 lives through organ donation and enhance the lives of up to 75 more through the gift of tissue! One more fact, AGE alone does not disqualify someone from becoming a donor. The oldest organ donor was over 90 and the oldest tissue donor was over 100. There’s always potential to be a donor; it shouldn’t stop you from registering.

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The next item on my list was is there an easier way to have people register as an organ-and-tissue-donor?

The two main answers were it should be mandatory, or at least have an opt-out a system where everyone starts as an organ-and-tissue-donor and if they chose not to be they may opt out of doing so. The other suggested method is education. There are a lot of people that do not know how the program works, not due to ignorance just due to confusion and miscommunication. Quite a few people also stated that if the people, who do not want to be part of the program, should not be given the chance of receiving an organ if ever the need arose. I didn’t want to go into details regarding that topic at this time as I feel it would pull away from the main point here. Many religions support organ and tissue donation or respect an individual’s choice.

“My mom convinced me to become an organ donor, actually I didn’t notice it was an option when I was getting my health card, my mom pointed out the section on the form and I checked it. She said they are no use to me when I die. Also, my cousin had died young and from his death, 4 people got to live”.

There are many countries that have implemented the opt-out system already including Argentina, Australia, Chile, Colombia, Europe, and Singapore.  The numbers of transplant patients waiting to receive a transplant are low. If I lived in Australia or any of these countries that have the opt-out system, the time spent on the waiting list could have been a lot shorter. It might have changed the future for many people that didn’t make it to the point of receiving their phone call that an organ was available.

Another interesting method being used for blood donation is in Sweden.  When a donor’s blood has been used to save someone’s life, the donor will receive a text message telling them their blood has made the difference in saving a life! I am sure that’s a rewarding feeling knowing that you have been incremental is saving someone – a selfless heroic act.

“Yes, because I think it’s the most incredible final gift that I can give, the chance of providing a new beginning to another human being”.

I think Sweden’s approach with their blood bank is a great idea. It allows the donor the chance to feel that their donation has made an impact on someone’s life.  It’s a great way of saying thank you! I have received blood transfusions many times throughout my life. I wouldn’t be here if there weren’t blood donors, they are just as important as organ donors. So remember there are other ways you can part take with donations. Consider donating blood when and if possible.

Now for a little education, this year in Ontario there has been 96 donors that have been able to donate their organs or tissue. Out of the 96 donors, 61 have been deceased, 35 are living donors. An extra 14 deceased donors from outside Ontario are not included in that statistics. Donor– definition: At least one organ has been retrieved and transplanted. To date, 13,300 Ontarians have received a lifesaving organ transplant since 2003.

Ready for another Fun Fact?  You are five times more likely to need an organ transplant during your lifetime than to have the opportunity to donate one. On average, only three percent of hospital deaths occur in circumstances that may lead to organ donation. This is not the case for tissue donation, which can take place in most cases when someone has died, as long as the tissue is suitable for transplantation! If you were wondering organ and tissue donation does not impact funeral plans. An open casket funeral is possible if that’s the fear of some individuals.

By registering, you are essentially making a decision to help save lives after death through organ and tissue donation. By making this decision, you give hope to patients like me for a life-saving or life-enhancing transplant and their families.

Even though you have registered as a donor the final decision is up to your family so make sure you have discussed your wishes and how important it is to you of being an organ-and-tissue-donor.

“I am an organ donor firstly because of your influence on my life but secondly I would be regardless because I think I won’t need them. I don’t agree with waste and I think everything should be used to its fullest potential. Maybe that’s weird, but why just throw me away?”

Once a family has consented to donation, testing is done to confirm the medical suitability of the organs and tissue, and to determine which patients waiting for organ transplantation are the best match for the donated organs. This includes a medical and social history of the donor, similar to the questionnaire completed when donating blood. Trillium Gift of Life Network works closely with a team of healthcare professionals to support grieving families through this process, and to ensure that as many people as possible benefit from the generous gift of organs and/or tissue.

In desperate times when an organ is critically needed, the transplant team can manipulate the size of the organ. Patients needing a liver or lung can have partial portions of the organ transplanted.  In dealing with lungs the team can cut the lungs down and transplant just the lobes. This was the case for my first transplant, due to the fact of my small stature finding lungs small enough for me was challenging. The team and I could no longer waste any more time, they knew I couldn’t fight much longer. It’s quite amazing that this is possible.

My first donor was able to save four lives, their heart, kidney, liver and lungs were all used to bring new hope into other lives. As well many victims with extensive wounding or trauma, people suffering from necrotizing fasciitis or purpura fulminans, burn victims, even skin cancer victims received skin grafts enhancing their lives. It goes to show the team will use everything possible as long as the organs and skin are healthy, clear from any infection or disease.

IMG_8743

 What are the most common organ transplants performed?

Lung transplant surgery can replace one or both diseased lungs. Lungs can come from either a deceased or living donor. A transplant may be recommended if you have a chronic obstructive pulmonary disease, cystic fibrosis, idiopathic pulmonary disease.

Heart transplant replaces a damaged/diseased heart with a healthy one from a donor who has died. This is the final treatment option for people with heart failure where all other options have failed. Heart failure may occur due to congenital heart disease, coronary heart disease, damaged heart valves, heart muscles, or viral infections. As with other transplants, you must take medication to prevent your body from rejecting the new heart.

Pancreas transplant the pancreas makes insulin and enzymes that help the body digest and use food. A common reason for this type of damage is diabetes.

Liver Transplant Your liver helps fight infection and cleans your blood. It helps digest food and stores energy for when you need it. Transplanted livers can come from a deceased or living donor

Small bowel transplant replaces a diseased or shortened small bowel with a healthy bowel from a donor. A small bowel transplant is considered when complications develop from total parenteral nutrition (TPN) or when a person is unable to tolerate this form of feeding. TPN nutrition is where liquid nutrition is given through a drip. 

Islet cell transplantation replaces only the part of the pancreas that makes insulin. It is a treatment for people with type 1 diabetes who have trouble controlling their blood sugar level. Islet transplants are done alone or together with a kidney transplant. Transplanted islet cells come from deceased donors.

Kidney transplant operation places a healthy kidney into your body. This kidney takes over the work of the two kidneys that failed, so you no longer need dialysis. Transplanted kidneys come from a deceased or living donor.

Cornea transplant also called keratoplasty, is a surgical procedure to replace part of your cornea with corneal tissue from a donor. Your cornea is the transparent, dome-shaped surface of your eye that accounts for a large part of your eye’s focusing power. 

Bone transplant is a surgical procedure used to fix problems with bones or joints. Bone grafting, or transplanting of bone tissue, is beneficial in fixing bones that are damaged from trauma, or problem joints. It’s also useful for growing bone around an implanted device, such as a total knee replacement.

Skin transplant is a type of graft surgery involving the transplantation of skin. The transplanted tissue is called a skin graft. Skin grafting is often used to treat: Extensive wounding or trauma. Burns.

A transplant is a type of surgery where an organ or tissue is removed from one person (the donor) and given to another (the recipient) to replace the recipient’s damaged organ or tissue.

An organ is a part of the body made up of various types of tissues that perform a particular function. A tissue is a collection of similar cells that perform a special function. There are hundreds of diseases that affect organs and tissues to the point that a transplant is required, but not everybody that suffers from disease requires one.

“Yes, I am on Organ donor. I made the decision to become one after my cousin’s life was saved not once but twice, thanks to organ donation. I would like to give a chance for someone else’s life to be saved like my cousin”

Just like in cartoons, myths and legends the Hero comes in all different shapes and sizes. This is true in reality as well!

Eight years after my first lung transplant I required another transplant as the lungs I had received were being rejected from my body.  I joined the transplant list in August 2009, I was sick, on oxygen in need of a transplant; however, I wasn’t critical at this point.

My second lung transplant, the donor’s lungs didn’t require reshaping or cutting. This could have meant two things, one my lungs came from a small adult or two a child. This brings me to a post I added in April 2013 called Ryan’s Story of Hope. The story is from a donor’s family that I know, their son Ryan was only 10 years old when he passed. Ryan died in 1997 from a cerebral brain hemorrhage. At the age of ten Ryan already knew how important organ donation was. In actual fact, he would go around and ask people if they had signed their donor cards, and tell them the importance of becoming a donor. Ryan was able to give life back. He donated his corneas, lungs, liver, kidneys, pancreas and heart valves With Ryan’s gift he was able to change the status of these recipients’ lives from existing to living. Ryan’s gift enabled a university student the ability to see. A woman no longer needed insulin and dialysis; she was able to work again, returning back to a normal life.

The next recipient of Ryan’s gift hits close to home for me as we share a lot of similarities. A boy of 16, with Cystic Fibrosis, had received his lungs. Without the double lung transplant, he would have died. Not only was he able to return to school, he could do things that previously were impossible. Running was no longer just a dream.  He could roller blade with his friends, what once were dreams for this boy became reality.

An important question most may still ask and to clear the confusion in the air I have posted links of where you can check as well register as a donor.   

How can you tell if you’re a registered organ donor?

Check online whether it be your computer or smartphone click from your province it will take two minutes to find out and if you’re not you’re at the right site to become one.

One stop shop link for all provinces is http://www.cantransplant.ca/home/organ-and-tissue-donation-consent/ select what province you’re from and the site will direct you to the correct place to register as an organ donor. I have also listed the links for each province.

ONhttps://www.beadonor.ca

BChttps://register.transplant.bc.ca/verification

AB – https://myhealth.alberta.ca/Pages/OTDRHome.aspx?selected=overview

SKhttp://www.cantransplant.ca/saskatchewan-organ-donation.php

MBhttps://www.signupforlife.ca/

QC – http://www.signezdon.gouv.qc.ca/index.php?accueil-sansjs

NLhttp://www.easternhealth.ca/Give.aspx?d=2&id=2223&p=323

NBhttp://www2.gnb.ca/content/gnb/en/departments/health/Hospital-Services/content/organ_donation.html

PEhttps://www.princeedwardisland.ca/en/information/health-pei/organ-and-tissue-donation?utm_source=redirect&utm_medium=url&utm_campaign=organ-and-tissue-donation

NShttp://www.novascotia.ca/dhw/msi/docs/MSI-Organ-Tissue-Donation-Form.pdf

YT, NT, and NUhttp://www.hss.gov.yk.ca/organdonation.php

If you live in the USA try this site https://www.dmv.org/organ-donor.php

Each province, state, and country are different but you can easily type into Google where you live and how to find out. When you register your consent for organ and tissue donation, you are letting those waiting know that you would help them if you could.

You don’t just have to be the hero of your own story, become someone else’s hero. Ryan Doige wanted to be a fireman when he grew up, a hero, his selfless gift of giving back made him a hero – he saved many lives.

Think green, recycle yourself!

During the month of April when spending time with friends and family bring up the topic of organ donation. Discuss the idea of becoming an organ donor. See if you can help start a gift of life for someone that you may not even know.  We are all Hero’s in training.

I leave you with these questions:

Are you an organ donor?

If you answered “YES” what made you decide to become one, is the reason of you becoming an organ donor strong enough for you to encourage others to do so?

 If you answered “NO” is there a reason that is holding you back?

There is no right or wrong answer here; we all have our own opinion and rights.

If you feel comfortable please share what helped you make your decision in the comment section.

“I want to be remembered for the life I gave, as well the life I lived!”

Register Below Become an ORGAN DONOR

be a donor be a hero


National Organ and Tissue Donation Awareness Week

In For An Oil Change

February 5, 2015 — 11 Comments
Getting hooked up to the plasmapheresis machine.

Getting hooked up to the plasmapheresis machine.

 It has been almost 5 years since my second double lung transplant (March 2010) and 13 years since my first (March 2002). It is truly amazing how fast the time has flown by. I’m here because someone gave me the gift of life. Not a day passes that I do not stop to reflect how grateful I am. Their gift, the most unselfish gift ever, has given me the opportunity to live; to breath, to laugh and create memories.

 In the past 13 years, I have done and seen more than most people will in a lifetime. I have watched my family grow in size, enjoyed adventures all over the world, made new friends and even got my own dog (the best dog in the world – Sheba). The time has allowed me to blend into society – to feel somewhat normal and not have to worry about any of my old arduous C.F. treatments.

 Not a day goes by without my sincere gratitude and appreciation to the families that have given me this gift. That’s truly what it is, a gift of generous portions that have allowed me to share time with my family, friends, and others, whose connections I have made through social media.

 Only about 55 percent of patients survive five years after transplantation. Those rates are a little better at networking hospitals, where about two-thirds of patients can expect to survive that long. Nationwide, only a third of patients live 10 years. It is unclear what, exactly, goes wrong after the first year.

 Most patients die of what is known as chronic rejection, which causes the airways of the lung to deteriorate slowly. Doctors do not yet know how to prevent or stop this process. This is the main reason why some people are re-evaluated for a second lung transplant. The procedure is the same as the first one but with more variables. The patient still has to go through a series of tests to see if they are physically and mentally able to handle a large operation as well the medication given after transplant can lead to high depression!

 Over the last few months, my PFT’s have been slowly falling, Pulmonary function tests are a group of tests that measure how well the lungs take in and release air and how well they move gasses such as oxygen from the atmosphere into the body’s circulation. This is a common test used for anyone with lung issue. After a lung transplant, this test is done monthly to make sure there are not any complications such as infection or rejection.

There are three kinds of rejection after a transplant:

Hyperacute rejection happens within minutes after a transplant has been done. This is due to antibodies in the organ recipient’s bloodstream that reacts with the new organ and results in organ failure. During this rejection antibody molecules suddenly bind with multiple target cells leading to death.

Acute rejection this is the most common type of rejection for transplant patients, it develops generally within the first month after surgery but it may appear at any time, even years after. Lymphocytes from the thymus (t-cells) are blamed for causing acute rejection. For most organs, the only way to show unequivocally that rejection is occurring is by biopsy of that organ.

Chronic rejection is also so known as either hyperacute or acute rejection. It is caused by multiple factors: antibodies as well as lymphocytes. Transplanted lungs with chronic rejection are said to have “bronchiolitis obilterans“, a scarring problem in the substance of the lung.

 Due to the consistent drop in my PFT’s the transplant team decided to have me in for a bronchoscopy. Bronchoscopy is a test to view the airways and diagnose lung disease. It may also be used during the treatment of some lung conditions.

 The following day after my bronchoscopy I received a call from my transplant coordinator letting me know that they had found the Influenza virus in one of the washing from the bronchoscopy. Influenza is a real bad flu for most people but for people with chronic illnesses/transplanties such as myself, can cause more issues as well damage my lungs. I was put on a 5-day treatment of Tamiflu; in addition, I took some time off work just to so I could recover a little faster. I returned to work at the end of the week feeling much better.

 A few days after my return to work, I received a call from my transplant coordinator telling me that they had the rest of my test results back from my bronchoscopy. I was kind of worried, as I always believed that no new is good news. The test results came back showing I had developed antibodies and some rejection. As I listened I could feel my heart racing, I felt light headed and a knot of dread formed in my stomach. I was told to come in the following week to have my blood and PFT’s done.

 Antibodies and rejection are two things someone after a transplant do not want! Antibodies are large Y-shaped proteins in the plasma of the blood cell. They are recruited by the immune system to identify and neutralize foreign objects like bacteria and viruses. Antibodies can also develop through exposure to foreign tissue, through pregnancy, blood transfusion or a previous transplant. The main concern of finding antibodies or proteins in the blood are that they will identify and attack foreign tissue, such as transplanted donor organs.

 It should be clear why rejection is not good for any transplant recipient. Almost every person who has had a transplant encounters acute rejection. When a person receives an organ from someone else during transplant surgery, that person’s immune system may recognize that an organ is a foreign object. This is because the person’s immune system detects that the antigens on the cells of the organ are different or not “matched.” Mismatched organs, or organs that are not matched closely enough, can trigger a blood transfusion reaction or transplant rejection.

 This is why the transplant teams react quickly when both of these issues come up in a patient’s results. When I head down to Toronto General Hospital to do my monthly blood and PFT’s, there are few things the team would look for in the blood during these tests.

WBC tells us if your white blood cells have increased (usually a sign of infection) or decreased (indicating a lower defense against infection).

HCT measures your hematocrit, the percentage of red blood cells present in your blood. Red blood cells carry oxygen to all parts of the body. When your HCT is low, you may feel tired or have little energy.

PLTS measures the level of platelets in your blood. Platelet cells form blood clots when your body is injured. Low platelet levels may cause you to bruise easily and to bleed for a longer time period.

 There are also a couple of drug levels to be drawn as some of the medication taken can be too high causing toxic levels in the patient. Drug toxicity is also a major concern as the body has basically been poisoned leading to severe central nervous system (CNS) toxicity, manifested by confusion, cortical blindness, quadriplegia, seizures, and coma.

 Blood work is also a monthly requirement after transplant as it helps to monitor all drug levels. It also helps to monitor kidney and liver levels as the medication taken after a transplant is very hard to these two organs.

Heading for my PFT’s, I still felt a little short of breath. I had been experiencing shortness since my run in with the Influenza virus. Once my PFT’s were completed I was asked if I was feeling short of breath as I had dropped another 30% in my lung function.

 Thirty percent is a large amount to lose in just over a month. These results set off alarms for the doctors to step in and figure out what is going on and what is the best form of treatment.

 The next day I received a call from my transplant coordinator telling me I needed to come into the clinic on Monday. There was no need to redo my PFT’s but the team wanted me to repeat my blood work as well have an antibodies count drawn and a Xray to see if there was any infection in my lungs.

 My mom (Tanis) decided to tag along to my clinic appointment as she had some questions of for her own and wanted to see what the doctors had to say. We met with the doctor and she told us that she was worried about the antibodies they found. The transplant team speculated that I had developed some kind of virus in November or just before as that is when I started to show signs of my PFT’s dropping. This would also explain why I could have developed these antibodies all of a sudden.

 Now you probably have come to the conclusion that antibodies are good, for most people as it helps them fight off virus and illness. But for someone who has had a transplant or needs to be imunnesupressed they are not. Imunnesupressed involves an act that reduces the activation or efficiency of the immune system. Some portions of the immune system itself have immunosuppressive effects on other parts of the immune system, and immunosuppression may occur as an adverse reaction to the treatment of other conditions.

 The formation of these antibodies and the protein they make are not a good thing for me. My immune system goes into attack mode making proteins to fight off what they think is an alien organism which in this case is my lungs.

 What are the treatments to remove this protein and antibodies; this was the first question that was asked. Plasmapheresis is the treatment that they use to help stop rejection. In addition to Plasmapheresis, they also recommend a large pulse therapy of the drug prednisone which is a treatment used in chronic rejection. Pulse therapy is a discontinuous I.V. infusion of a high dose of prednisone (more than 250 mg) given for one or more days.

 Plasmapheresis is a little more complicated, a few more steps are involved in this procedure. Simplified I think of a large trash can or an oil change for the body – the blood being the oil.

Dan receiving Plasmapheresis

Dan receiving Plasmapheresis

 It is a procedure similar to dialysis where my blood is spun in a centrifuge, filtered through a machine that separates it into plasma and blood cells. The plasma is removed and replaced with another solution, such as saline solution, albumin, anticoagulant and the reconstituted solution is then returned back to my body. The anticoagulant is added so the chances of blood clots are less likely to happen, as a blood clot could cause a stroke.

 Removing the plasma also removes the antibodies that have been sent out to attack my lungs. Plasmapheresis is used as a treatment for many conditions mostly including autoimmune disorders. While there are risks, the procedure is pretty safe.

 The reason why the albumin is added back to the blood is because it makes up 60% of the total protein in our blood and plays many roles. It keeps fluid from leaking out of blood vessels, nourishes tissues, and transports hormones, vitaminsdrugs and ions like calcium throughout the body.

 For the Plasmapheresis treatment to go smoothly I needed a central line put in. My veins have been well used in the past with all of my hospital admissions. This procedure is usually done in a room like an OR Room as there is some special equipment required (CT scan and an Ultrasound Machine). I did not get my central line input in till a few days after my admission, as there had been a long waiting list. This will push back my hospital stay a little longer than planned.

 My central line was inserted on the right side of my neck, not a pleasant location, however, the job was done. I could officially start making maple syrup, I mean to start my Plasmapheresis treatment. It felt as if I was tapped like a maple tree, to collect sap. Unbeknownst to me, I developed “taco neck” this would be my own medical term. Let me explain what “taco neck” is; it when you tilt your head left or right on a 20-25 degree angle as if you were eating tacos so all that delicious filling slides right into your mouth. However I was not eating tacos, it was just that my neck was stiff and sore. It may be convenient while eating a taco, however, having your neck in that position for two day’s will cause some discomfort not to mention look a little funny. This un-medical term “taco neck” was a result of the catheter being too tight resulting in my neck muscles tensing up. This only lasted for two day’s so I was quite relieved once it went away, allowing myself to sleep a little better at night.

 A central venous catheter, also called a central line, is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood products over a long period of time, usually several weeks or more. A catheter is often inserted in the arm or chest through the skin into a large vein. The catheter is threaded through this vein until it reaches a large vein near the heart. A catheter may be inserted into the neck if it will be used only during a hospital stay.

 I had a reaction to the Plasmapheresis during my first treatment. My blood pressure dropped considerably causing dizziness, light-headedness, some loss of concentration, a little blurred vision in my right eye, nausea, my feet/hands and head felt cold clammy and my skin was a little pale. My breathing was shallow; I was really tired as well I developed a migraine which lasted over 8 hours. They attributed this to the fact that I had been given my blood pressure medication before the procedure. In addition, I reacted to the blood thinners that were given during the Plasmapheresis.

 My second treatment went a lot better, I was not given my blood pressure medication before going down and the blood thinner was decreased. My blood pressure did drop however not as low and I did not have any of the other symptoms.

 The Plasmapheresis treatment is a minimum 5-day course; I asked the nurse what the cost of this procedure would be if I did not live in Ontario. She asked me to guess, I came up with $1,000 each session. She told me I was very close and was impressed, then informed me that each session can cost up to $1,300-$2,000 per procedures. Thus a five-session course of Plasmapheresis can cost anywhere up to $5,000-$10,000, (not including hospital stay) now that is one expensive oil change! Another reason to be thankful for the health care provided in our country.

Plasmapheresis Machine

Plasmapheresis Machine

 Once I have finished the five-day treatment of the plasmapheresis the transplant team will decide if they want to go ahead with the pulse treatment of prednisone. They would like to wait until I am finished the plasmapheresis as they want to deal with each issue at a time or wait till I have had my 3rd treatment of plasmapheresis. The reason for this is so the pulse drug given through the IV will not be cleaned out of my blood during the next plasmapheresis.

 Once again my support team (friends, family, individuals I have never met over social media and my transplant team) have been by my side the entire time. Words can not describe how much this means to me. It helps to build my spirits when they are low. It helps to give me back my sanity when I am on the verge of losing it after endless hours of sitting around my hospital prison.

 Your continued support has helped me to be the fighter. Your encouragement lifts my spirits. Once again I find myself standing in that dark, chilly, damp, lonely lion’s den. As I stand I feel the cold loose sand in-between my toes, my feet lightly sink with each step. However, I will not fall. Your support allows me to stare deep into the powerful green-yellow glow of the lion’s eyes. I will not let fear overcome me. Your energy fills me with the strength and power necessary to put the lions to sleep, allowing me the chance to climb out of the lion’s pit once again, scarred but even stronger!

My greatest thank you is given from myself and my family!

National Organ and Tissue Donation Awareness Week

 

Organ Donor

The BIG QUESTION, are YOU A REGISTERED DONOR?

TAC

Tomorrow May, 6. 2013 I will be at the Timberlane Athletic Club (155 Vandorf Side Rd  Aurora, ON L4G 6W7) from 10:00 – 1:00. If you are in the of Aurora or Newmarket area, please feel free to come by and registered or even come and say hello!

If you registered as a donor through your drivers licence a while back, you’re no longer are an Organ Donor. The best way to check if you are a donor is to look on the back of your new Ontario health card, where on the right side in small print, it will read “donor” or “donneur” in French. If it doesn’t say that, you’re not registered.

A lot of people still think that Organ Donation registration is done through a driver’s licence, and it’s not. The new way of tracking and registering as a Donor is now done through your Ontario Health Card.

Organ and tissue donors are also able to register to be a donor through the website. Trillium Gift of Life recommends people check the website even if they have the proper designation on their health card. On the site, donors can confirm they’re listed and can update their information.

One organ and tissue donor can save up to eight lives and enhance as many as seventy-five more. By registering your consent to donate today, you can positively impact the lives of many Ontarians in need of organ and tissue transplants.

National Organ and Tissue Donation Awareness Week

Are You Aware?

May 5, 2013 — Leave a comment

When was the first time you learned about Cystic Fibrosis? Please read this article there is quite an amazing video attached in it!

CF Wife

Do you remember the first time you learned about Cystic Fibrosis?  It has been my experience that unless you work in healthcare or have a personal connection to the disease (most likely through a friend, family member, or acquaintance), the words “Cystic Fibrosis” have little or no meaning at all.  This needs to change!  The month of May is Cystic Fibrosis Awareness Month.  Consider these statistics from the CF Foundation website:

  • 30,000 children and adults have CF in the United States.
  • More than 10 million Americans (1 in 31) are symptomless carriers of the defective CF gene but do not have the disease (you could be one of them).
  • About 1,000 new cases of Cystic Fibrosis are diagnosed each year.
  • The predicted median age of survival for a person with CF is in the late 30s.
  • There is no cure for this disease.

Since 1955, the Cystic Fibrosis Foundation…

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May is Cystic Fibrosis Awareness Month

Time is Precious for Those Living with Cystic Fibrosis

Time is Precious….

A Mother Lives On

April 26, 2013 — 2 Comments

 

Natalie

Natalie

 

 

My next story is a woman by the name of Natalie.  Natalie is a wife and a mother of two girls. Her story not only shows how an organ donor can help save a family from losing a mother but also help to keep it together.

Due to heart failure, Natalie received a heart transplant in 2010. Her battle to live started at the age of 23. Natalie’s heart transplant helped her to become an integral part of her family and feel more like a mom and wife again.

Natalie has the same vision with her story as I have with mine, which is to help bring the awareness of organ donation and for other to become an Organ Donor. Please take the time and read Natalie journey through her transplant.

Who would have thought that a young girl who does not like fast food, is not much of a drinker (this being the reason why my husband calls me a “cheap date”), exercises can develop heart failure at the age of 23.

Hard for many to imagine that heart failure can affect you at such a young age and it sure was hard for me to come to terms when my cardiologist entered my hospital room and announced I was suffering from heart failure.

I got married to the love of my life.  We decided to start a family fairly soon after our wedding.  I was 23 years old and blissfully happy.  I got pregnant and my husband and I were ecstatic.  Four months into my pregnancy, I was faced with various health issues. I now realize these symptoms were the beginning of my heart weakening.

Back then, nothing alarmed my gynecologist.  If I complained about being tired, he said pregnant woman are often tired.  If I complained about coughing, his answer was that this was simply a pregnancy cough.  Six months into the pregnancy, a routine gynecologist visit landed me in the hospital.  My daughter decided to make an appearance into this world much sooner than anticipated.  My miracle baby was born 3 months premature; luckily for us has grown up into a healthy young girl.

Since all seemed normal, doctors felt comfortable discharging me a few weeks after my daughter was born.  My daughter was still in the Neo Natal Intensive Care unit.  I was totally exhausted at home. After a few days later my husband returned to work.  Upon his return from work, he came to see me in our bedroom.  That was the room my whole day was spent in for the past week.  He noticed my leg was double its size.  He rushed me to the hospital once again and it did not take long for doctors to tell me this was a blood clot. Standard next step to a blood clot is to make sure the heart is functioning properly.  And shortly after, my next visit was not by an emergency doctor but rather a cardiologist informing me that my heart was extremely weak, was not pumping well and the term I was diagnosed with Post-Partum Cardiomyopathy.  Yikes.  What a word.  It seems so mundane and simple to me now but back then, heart failure, heart not pumping well in a healthy 23-year-old.   My pregnancy caused my heart to get weak.  And those symptoms I was having only 4 months into pregnancy were actually a sign.

I was placed on a heart transplant list 1 month after having given birth.  My mind refused to believe this was where we stood.  I strongly believed that with all those pills I was popping in my mouth, with all those plugs attached to, I truly believed my heart’s strength would come back.  After all, I am only 23 years old, healthy, young mom… my body is bound to bounce back.  Had an echo done a couple of weeks later and my heart function was not increasing but rather declining.

Young heart recipients would come into my hospital room so they can show me the life we lead after a transplant is such a beautiful one.  Instead, I simply closed the door in their face and said “don’t waste your time” I am not taking that path.  My body or I should say heart will bounce back.  Those positive vibes I was sending to my body worked.  Despite having had to go through surgery for a dermoid cyst removal (size of a grapefruit) in my abdomen, 2 days after the surgery my own heart started to improve.  And 2 weeks later I had crossed that famous Ejection Fraction percentage (EF measures the pumping of the heart) and taken off the transplant list.  Was my heart come back to normal, far from it?

It was pumping better but was definitely not a normal heart.  The heart muscle was weak.  For the next 10 years, I lived with heart failure yet was able to carry on a “fairly” normal life.  We planned 1 event a weekend; I took a nap every single day.  2 years after, my husband and I decided to adopt a child from Armenia and our family was complete with 2 wonderful girls.  Never did I expect that my young girls would help me as much as they did during those 10 years of living with heart failure.

Sometimes their mom would be too weak to get herself a glass of water or my meds and my daughters would bring them to me.   Mom’s reoccurring hospitalizations ended up not scaring them.  A lot of ups and downs throughout those 10 years.  Blood work, irregular heart rhythms’, cardiologist visit and emergency room visits were a standard part of our lives.  My husband, my rock, provided for me physically and most importantly emotionally.  He kept me strong throughout those 10 years.  He would return from work, prepare supper, and look at the girls’ homework since me spending time with them for 3 hours after school was just enough that it was time to take it easy after that.  Sometimes I had the energy to prepare supper other times, would rather stay in bed.

I would have loved to clean up the kitchen after supper much more often than I actually did.  That would have meant I don’t get tired quickly, that would have meant I have the energy to do what average moms, wives do.  But my condition was unique and despite what many think that they would have loved to take a break from house chores, I actually preferred not to.  I was not living a normal life.  It was my husband and my 2 girls who allowed me to live these 10 years of a decent life despite having heart failure.  My mom and dad did take months off from work to come and help us since we lived 15 hours away from one another.  But the only people I depended on day after day over 10 years of my life were my 2 girls and my rock.

My heart took a sudden turn 10 years later.  I suffered a near fatal heart block.  My husband got back from grocery shopping.  Came to see me in bed and could not feel a pulse.  The blood pressure machine was unable to bring up any numbers.  He rushed me to the hospital.  After that, I have no clue what happened.  My husband does but I don’t want to know.  I do know that it most probably was like a scene in Grey’s Academy.  A patient being wheeled in, everyone drops what they are doing to come and save this 32-year-old young girls heart.  The tubes, the heart monitors, the gloves, the mask.  It’s no surprise that doctor and emergency related shows on TV are shows I no longer watch.  It was that moment that my husband thought he was losing me.

But I was not ready to leave this Earth just yet.  I woke up from an induced coma 2 weeks later. Drugged and disillusioned.  My cardiologist came into my room and said that I had no choice but to get a defibrillator put in me.  A few hours later he came back and said the results of my ultrasound showed that my mitral valve needed to be replaced.  They wheeled me into the OR for open heart surgery.  They put me down.  When I woke up, I turned to my husband and said: “This is how easy open heart surgery is.  I am not feeling any pain”.  Just then, my cardiologist walked in and said that they could not do the surgery because they realized my heart would not have survived it.  So that’s why I wasn’t feeling anything.  They did eventually put the defibrillator in to be on the safe side.

Heart transplant terms were mentioned again by my doctor but I still refused to believe I needed one.  I told him, 10 years ago, I refused to believe it was my only option and I was right.  Meds fixed it.  Give it some time I told him.  1 week, 2 weeks, 1 month, 2 months and I still believed I was going to get better.  My husband got a job transfer to Toronto.  We were gladly going to take it since it meant being closer to the family.  We came here on a 1-week house hunting trip yet the “we” turned into my husband being the one who went from house to house.  I had no energy.  Despite asking for our hotel room to be as close as possible to the elevator, walking 3 steps to getting into the elevators felt like I just ran a marathon.

I still remember one day an individual wished me congratulations and asked when the baby was due.  My stomach was so swollen that it looked like I was about ready to give birth.  When one’s heart does not pump well, water accumulates and that’s exactly the effect it has.  It was during this trip that I realized that I had reached rock bottom. It was not going to get better.  I had reached the point where I knew a heart transplant was inevitable.  After having taken that decision I felt like a huge load was lifted off my back.  That backpack I was holding for 10 years of my life filled with bricks… well, I was finally able to put it down.  My cardiologist from the US faxed over my files or should I say binders to Toronto and the process began.

When one decides they want a transplant that doesn’t mean you are in the clear.  Tests and tests have to get done to ensure the rest of your body s in good shape.  Organs are so precious and we have less than what we need that they can’t simply give one to someone who in essence will still not be able to survive due to other medical issues they might have.  So that call you get from the transplant coordinator saying they accepted you, you are on the list allows you to believe that that second chance at life might actually come true.  Yet your life is in someone else’s hands.  Not your doctors, but donor families.  I was too sick, to wait at home and they admitted me into Intensive Care Unit.

I still remember my cardiologist rolling up a chair next to my bed and saying.  “Make this your home until you get your new heart”.  On one hand, she is saying until, on the other hand, one never knows if that day will come.  But you want to believe you will not be part of those statistics that do not make it.  You believe you will not be those 1 in 3 people who die every day waiting for an organ.  My health deteriorated.  I disconnect with my life, my girls, my family since I had to keep whatever little energy I had to myself to help me fight this battle.

Waiting was the hardest part of my journey.  I did not talk to my kids for 3 months, I did not call them.  Watching TV could technically be an easy distraction yet watching for 5 min. put me out of breath.  My mom replaced all my hospital meals with homemade food and my husband would bring them to me.  He went to work, came to see me, fed me, brushed my teeth, tucked me in bed and we always hoped that night would be our lucky night.  A new heart would come.  Day after day, that’s all we hoped.

The more you wait, the sicker you could become and so many don’t get to see that light at the end of the dark tunnel.  I walked in that dark tunnel day after day hoping to see the light.  And one night, in the middle of the night a doctor came to my room.  I looked at him as he was wearing a surgical head bandana.  I talked to him in a rude way saying you are probably here to prescribe a medication because of my odd heart rhythms.  He said no.  We have a heart for you.

That is when I saw the light at the end of the tunnel.

9 days later I was discharged from hospital walking without a walker.  It did not take long for me to start being a mom and a wife, a complete one.  I woke up early and prepared breakfast for everyone in my family.  I had the energy to continue and make lunches for my girls and husband.  I no longer needed to take a nap every day, something I did for 10 years of my life.  I was able to finally sleep on my back rather than sleep sitting since someone who suffers from heart failure coughs when they sleep on their back.

One and a half years later, I biked 25 km. to raise funds for the Heart and Stroke Foundation.  Last year, I biked 40km. and this year my goal is 50km.  I have never lived like this before.  Never had this much energy and all this thanks to my donor family.  They could not save the person they loved lying right in front of them but yet had the courage to save the life of a complete stranger (mine).  I owe my life to them.  They allowed my sister to still have a sister to talk to.  They allowed my parents to still have their daughter.  They allowed my kids to have a mom, they allowed my husband and I to celebrate our 15 year anniversary together.  Thank you to all donor families.  Hope my story changes someone’s mind.

Become an Organ Donor

Natalie and her family

Natalie and her family

Think GREEN!

April 9, 2013 — Leave a comment

1 organ donor can save up to 8 lives

It’s beginning to feel more like spring as we move into April, soon enough we will be able to smell that fresh earthy pungency sent in the morning air and hear the birds singing in the as we wake up. With spring’s arrival, it’s time to think GREEN!

April 21-28 is National Organ and Tissue Donor Awareness Week (NOTDAW) this year’s theme is “Retire your Donor Card. YES, retire your donor card as the cards are invalid now. Due to the donor cards not always been available when the information was needed the process has changed a little to make being a donor more convenient. With the new donor registration, your consent is stored with the Ministry of Health and Long-Term Care database so it is available when needed. The best part of this of this change is you can register on-line, it takes less than three minutes to click become an organ donor.

During the week of April 21-28, I will be sharing stories of individuals that have journeyed through The Gift of Life. Subscribe to my blog or check back during that week, because you won’t want to miss out on these incredible hart touching stories.

To show your support towards these individuals and NOTDAW wear GREEN and let’s see how GREEN our communities can get by raising awareness of Organ Donation!

National Organ and Tissue Donation Awareness Week