A Point of View

Perspective is the way we see things when we look at facts from a certain distance, it allows us to appreciate their true values.  These values can lead us to different illusions, giving us the ability to remove the blindfold that can overcome our lives at times.

The subtitle of my blog is “A Perspective of Another Life”, the main reason for starting my blog was to help educate those that didn’t know about Cystic Fibrosis and Transplantation. I wanted to show people that a “normal world” to some could be seen in a totally different perspective by another. It moves you to ponder,” what is normal”? What is normal for the spider is chaos for the fly.

Since my 15-year lung transplant post, I’ve been in touch with a lot of CF’res and Transplanties sharing stories as well answering a lot of questions for those that are just entering the world of Cystic Fibrosis or Transplantation.  This has been a learning curve enlightening me that different kinds of CF mutations create different kinds of medical conditions and results. This knowledge has opened my eyes to just what Cystic Fibrosis is and how it can affect your life. It has shown me the importance of communicating and educating people, even family and friends who don’t always understand the consequences of what living with CF is like.

This gave me the idea to ask a few Cfer’s and CF Caregivers if they would be willing to write something they felt important or could share a little part of their story and show how Cystic Fibrosis has affected their life.  This research has allowed me to gain a new perspective for my readers, giving them the ability to see how important it can be to spread the awareness of Cystic Fibrosis. Let the reader enter the world of those affected by Cystic Fibrosis, what better time than during May, Cystic Fibrosis awareness month. It is my goal to end the month’s awareness off with readers not only learning new facts, but also gaining insight by sharing personal experience stories.

The stories are heartfelt some deal directly with CF while others cross paths into transplantation, the importance of a good support system including friends, family and significant others in our lives.  The stories touch on depression and anxiety and the daily challenges that living with Cystic Fibrosis present. 

I hope these different perspectives help you as the reader realize that we do not see things as they are; we see things as we are. By entering our world for a moment, stepping into our shoes you might understand the challenges that we face everyday living with an incurable disease.

Learning is about seeing things from a different perspective. I like to think my role in life is to help people improve their vision by removing their rose-colored glasses it is then that reality becomes an education.

HERO-AS-SELF

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.

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?“ or “No, 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.

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.

 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.

ON – https://www.beadonor.ca

BC – https://register.transplant.bc.ca/verification

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

SK – http://www.cantransplant.ca/saskatchewan-organ-donation.php

MB – https://www.signupforlife.ca/

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

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

NB – http://www2.gnb.ca/content/gnb/en/departments/health/Hospital-Services/content/organ_donation.html

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

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

YT, NT, and NU – http://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

In For An Oil Change

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

 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, vitamins, drugs 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

 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!

Are You A Registered Donor?

 

The BIG QUESTION, are YOU A REGISTERED DONOR?

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.

Think GREEN!

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!