Archives For CFRD

Ashley’s Perspective:

Living with a chronic illness is never easy, especially Cystic Fibrosis.  I was born in Denver, Colorado and diagnosed with Cystic Fibrosis at birth.  Colorado was the first state in the nation to include Cystic Fibrosis in newborn screening.  From a young age, Cystic Fibrosis affected my digestive system and my lungs, however as I became older, CF began to affect me in other areas.

In 2011, I was diagnosed with Cystic Fibrosis Related Diabetes.  This was a shock for me at first because I never thought I would have to experience taking insulin.  Over time, I began to get used to my new routine with taking insulin.

In 2015, I was diagnosed with Cystic Fibrosis Liver Disease.  I never saw this coming.  At this time of the year, I was the healthiest I had ever been and before I knew it I was being rushed to the hospital.  They discovered I had CF Liver Disease because I was bleeding internally in my esophagus.  The blood could not flow through my liver and backed up to my esophagus.  They had to perform a TIPS Procedure, seal up the bleeding vessels, and put me on the liver transplant list. 

I was in the hospital for a month and a long and slow recovery.  I have learned from CF that things can be thrown your way and that sometimes there is no way to be prepared.  Being only 19, I have experienced more than I thought I would experience.  Then again, it is different for every individual with CF.  I decided that because of what I have gone through, that I want to be able to share my story, advice, and show that it is possible to live with a genetic illness and still have a positive perspective.

With this in mind, I created a YouTube channel called Ashleys Roses as a place for others to learn about to CF, feel that they are not alone, receive advice, and laugh a little.  One thing I emphasize all of the time is, yes, Cystic Fibrosis is hard!  Sometimes we think there will never be a cure or sometimes we feel like everything is always being tossed at you, but we are warriors, we are Cystic Fibrosis Warriors.  It may feel like we are always in war, but we never go down without a fight.  Sometimes it is hard to see it in the moment, but there is always a positive, you just have to look for it.  Remember, CF does not define who you are.  You are a strong and amazing individual.

ashley wilson

“It may feel like we are always in war, but we never go down without a fight.  Sometimes it is hard to see it in the moment, but there is always a positive, you just have to look for it.”  – Ashley’s Wilson

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.

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 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