Archives For Transplant

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

March 22nd, two days after the arrival of Spring is a very important anniversary for me. It is the day that not once but twice I was given a second chance at life; my new beginnings!

Surviving A Dream

How incredible to think that my two Double Lung Transplants were performed a day apart, the first one March 22nd, 2002 and my second one March, 21st 2010. I would now like to share a part of my story with you. I’m sure many of you may be shocked by this statement as I am generally a man of few words. But I feel it’s something that needs to be shared and passed along to others. Life is indeed a gift.

I was diagnosed with Cystic Fibrosis at birth. I had what was called meconium ileus which simply means a blocked bowel. It is very common in babies born with CF as the sticky mucous that damages the lungs can also cause blockages in other organs. As I was being rushed to Sick Kids for emergency surgery, my Mom named me Daniel. She had a feeling then that my life would be filled with challenges…Daniel in the Lion’s Den.

By the time I was 15 years old I had spent a considerable amount of time at Sick Kids, in fact, it was like my home away from home. The reoccurring chest infections had severely damaged my lungs and despite IV antibiotics, daily physio and inhaled steroids I was slowly losing the battle with this terrible disease. Just after my 15th birthday, (April 2nd), the doctors told my family that without a lung transplant I had no more than 1 year to live. They said a lung transplant wasn’t a cure for CF, but more of a solution; that sometimes you exchanged one problem for another.

After much consideration and a barrage of tests (you have to be emotionally as well as physically able) on October, 31. 2001, I signed my consent to go onto the transplant list. I remember this day so clearly, after signing I headed to the Bell store to pick up my pager which would alert me when they had found a suitable pair of lungs.

That night I had plans to go out to AMC movie theaters to watch a friend’s movie screening. That night also opened a lot of eyes, not only mine but my families. My pager went off a mere 6 hours after signing my consent form to be on the transplant list.

I had left the pager at home with my Mom. I did have my cell phone with me in case anyone needed to get a hold of me. Murphy’s law was in place the battery had fallen off in my pocket without me knowing. When my frantic Mom tried calling I did not answer. She called a friend on the York Regional Police who dispatched a car to go find me. AMC has over 30 movie theaters; I was located in the last one they checked.

I seemed to know immediately what was happening, the movie paused, the lights came on and I saw a police officer in the corner of my eye. I felt my stomach drop, similar to the kind of feeling when you’re on a roller coaster and you have no control. The officer called out and asked If Daniel Pfaff was in the theater. I stood up and walked down with my sister Amy following.

We headed outside where I was met by my brother Chris and his girlfriend Kim (now wife). The ambulance was taking a long time to arrive; I was put into the police cruiser and was going to be escorted down by them. Just at the last moment, the paramedics showed up and I was transferred to the back of the ambulance.

What was going through my mind? “What the FUCK” not the bad “what the fuck”, more like when you have a million things running through your head and you are unsure what to deal with first. My older brother Chris jumped into the back of the Ambulance with me. Kim and Amy jumped into my mom’s Suburban that Chris had driven down as if he was a Nascar driver, the vehicle was still pinging and hissing from the trip. Chris told Kim that she would have to drive the truck to the hospital and meet us she made a worried face as if she wasn’t going to make it in time, to see me go in before my operation. Once the doors of the ambulance closed Chris told me he had driven the shit out of the truck to find me in time and would be surprised if it would actually get them to the hospital.

The next part was a little adventure slash cluster fuck, as this was at the time that N1H1 had hit Toronto and the hospital had employed a lot of new procedures that everyone was still getting adjusted to. I remember feeling a little anxious when the paramedic who was driving passed a map to the paramedic that was assessing me and asked if I knew how to get to Sick Kids. At this point, we were passing the ACC and a Leaf game just had ended. There were people all over the roads not moving out of the way. We eventually pulled up to the old emergency doors which had been turned into a food court, never the less we finally arrived at our destination 7C where my Mom, Dad, Matt, Amy, Kim, family, and the team of nurses were patiently waiting for me.

When we got there, the nurses prepped me and completed all required routine tests before the transplant. Once they were finished with the tests “THE WAITING GAME” began. Let me explain the “THE WATING GAME”. This is when you’re waiting to be taken down to the OR. Time moves very slowly in this distorted dimension; a minute is like half an hour.

During this time the doctors are confirming that the Lungs are healthy enough to be transplanted. Sometimes while the organs are being transported they can be damaged. However “THE WAITING GAME” isn’t always bad, it gives you the opportunity to spend time with your family. The question is always lurking in the back of your mind, “Will I come back through the OR doors with a beating heart and a new pair of lungs. In 2002 the statistics of surviving a lung transplant were, 30% never made if off the OR table, 30% made it through the operation but developed complications post transplant that greatly reduced their quality of life and 30% survived with minor complications.

At last, the time had arrived for the doctors to take me to the OR for my transplant. With my family for support and another hospital bed pushed behind me with my medical records, I was ready to begin the battle for my life. Once we got to the OR doors my Doctor went through to make sure the team was ready and prepared, leaving me some time with my family to wish me luck.

My doctor reappeared with a concerned look on his face. “Dan you will not be breaking any records for the quickest time from signing your consent to transplant, the lungs are not suitable to proceed”

My emotions were extremely mixed, I felt both relieved and disappointed at the same time. It’s hard to explain the feeling. The closest way I can relate would be saying someone scared of heights is about to face their fear by climbing up a ladder. On their last step, the ladder is removed and they fall. They are happy that they are on the ground level where they feel safe however they still know they are going to have to face their fear of climbing the ladder eventually. I returned to 7th floor stayed the night at the hospital to rest. The next day I went home.

The false alarm had a huge effect on me. It made me realize how vulnerable life is and how much I had to lose. I was fifteen years old and scared shitless about my future. I decided to take myself off the transplant list. I worked very hard on my treatments and brought my PFTs (Pulmonary Function Test) back up to the low 40% levels, just enough to be able to leave the transplant list.

The Doctors highly advised me not to go off the list, and I know my mom was not happy with my decision. My family instinctively knew I didn’t have a lot of time left. We did as much as we could with each other building memories, going on trips, dinners, lacrosse and hockey games, and just hanging out. I was once again spending more and more time at the hospital fighting infections.

It was March Break 2002, I was very sick. I had come home from the hospital for a couple of days. It was a Friday and my Mom was heading out to work for a few hours. We were all going to the Rock Game that night. I remember going to the washroom and throwing up a lot of blood. All I could think was this is the end, I called my Mom right away and she came home immediately. She called the hospital and they said that there wasn’t much they could do, this was a sign that I was in the last stages of my disease. They asked what we had planned and she said the Rock game – they said take Dan to the game and bring him back on Monday.

On the way to the game, we stopped for gas, my family jumped out to service the truck leaving my mom and me alone. My mom pleaded with me to reconsider putting myself back on the lung transplant list. Stubbornly I sat there with no response, several moments went by, and quietly under my breath, I told her yes I will go back on. She immediately called the CF clinic telling that I wanted to be put back on the list. However, because it was 4:30 p.m. on a Friday afternoon they would not officially put me on the list until the Monday, March 17th. We headed to the Rock game for another fun evening of building memories.

On Monday morning I was getting ready for school when I mom came in and said we were going back to the hospital. School at this point was the only thing that made me feel normal and gave me a social life away from home. We packed my bags and once again made the trip to the hospital.

I knew I wasn’t well which was confirmed by my doctor’s serious expression after checking me out. All I did was sleep, I felt very weak and exhausted; breathing was a struggle. Only 10% of my lungs were still working. Put a straw in your mouth, close your lips around it and breathe; this is what breathing feels like when you have CF. It is a struggle to get anything done without being out of breath all the time. I was coughing up large amounts of blood. I still remember Dr. Coates coming to visit my Mom and I in my room. He looked very solemn as he said,” Dan things don’t look very good. If something happens we don’t want to resuscitate you as living on a machine is no life”.

It was March, 21st. 2002 Chris and Kim came down to join my mom and I for dinner. There was a terrible snow storm happening and the roads were in poor condition, they left shortly after and I went to bed. Not too long after falling asleep, I was awoken by my mom, Dr. Mindy Solomon and the transplant team was beside my bed, and she whispered that they had lungs for me. This time I didn’t have to worry about being found in a movie theater or having the paramedics get lost on the way to the hospital. This time I had to worry about being strong enough to survive the surgery both physically and mentally. I remember there was a moment when the nurse left my room to get something I turned to my mom and told her that I didn’t feel I was strong enough to make it through the surgery. My mom with her motherly instinct reassured me that I would be fine and everything is going to work out.

Once again I am wheeled out in my bed with my family and medical charts behind me to face the OR doors. As usual, the doctor went through first, this time not taking so long to return. With my family by my side sharing their comforts and wishing me luck I am told that the lungs look good and that I will be receiving my lung transplant. I am wheeled through the OR doors. I lay on the OR table listening to Neil Young “Till the Morning Comes” in the distance feeling the sedation start to take effect as if I am falling backward in a hole slowly drifting away.

I remember waking up in the recovery room somewhat distorted and confused, I wasn’t sure what was going on. My family was there. They were quite surprised that I was awake. I could tell they were relieved that I had made it through the surgery. However, it was hard to see any of them as they all had masks on. I was to be transferred to ICU luckily for myself I do not remember a lot of ICU, but for the parts, I do it wasn’t pleasant. I do know that I did fight a few very serious battles while there, at times I came very close to being one of those patients that didn’t survive post transplant. I will go into detail another time about being in the ICU, I do know it was probably one of the harder parts of my transplant my family had to experience.

I ended up spending another 2 and half months at Sick Kids recovering. I left my home on a snowy day in March and returned when the grass was green in May.

It is estimated that 90% of patients live at least 1 year after lung transplantation. Only 55% of patients survive to five years, with 1/3 of patients living to ten years. It is unclear what exactly goes wrong after the first year. Most patients die of what is known as chronic rejection, which causes airways of the lung to deteriorate slowly.

In 2009, seven amazing years after my transplant I started having complications with my lungs. Once again I was having reoccurring chest infections. While at my transplant clinic for a follow-up appointment, the doctors informed me that my lungs had gone into chronic rejection and my only hope would be another transplant.

A second transplant is quite tricky. There are a lot more complications than the first transplant, especially concerns around bleeding. I was told by the doctor to give some thought to the possibility of another transplant. When I thought my quality of life wasn’t where I wanted it to be I was to let them know and I could begin the tests and procedures that would allow the doctors to determine if I was physically/mentally capable of going through another Lung Transplant.

Being more familiar about lung transplants when it came time to go onto the transplant list I was a little more at ease. I had the same feelings as when I was waiting for my first transplant, but I was more educated and had set a plan of action to get through this time. The program at Toronto General is quite comprehensive. I was put on an exercise program working out 3 times a week, allowing my body to get stronger. In a sense, I was preparing for another battle. By September I was put on 24/7 oxygen. I was slowly deteriorating and could feel it. The doctors raised my status on the transplant list.

This time I had accumulated more baggage, not only was I carrying a pager wherever I went, I had an oxygen tank and traveled via a wheelchair. Walking left me breathless and exhausted.

“The Good Old False Call”, I think most people experience these at least once. February 16th, 2010, this time my brother Matt, sister Amy, mom and I were out for all you can eat sushi at a local restaurant in my town. We were celebrating Amy’s last night in Ontario as she was leaving for Calgary the next day. Just as we are finishing my phone goes off, I answer it and I hear a man’s voice saying his name is Bryan and that there are a set of lungs for me that I should come to Toronto General Hospital right away. After I hang up I feel my family’s eyes on me curious as to who was calling. Calmly I inform them it was a call for my lungs. We quickly paid the bill and were off to race to the hospital, hoping it’s the real thing and not a false alarm.

After getting all the procedures and tests completed I head back to my room with my family to wait. This time I didn’t end up getting to the OR doors, they knew fairly quickly that the lungs we not useable. Once again we went home with mixed emotions.

This incident reminded my family how fast I could be called in again. Amy ending up staying and not going to Calgary, she was wonderful, helping me out to the point where we called her my Donkey, as she would have to carry and push me around in my wheelchair.

It was a sunny warm day March 19th, when I went along with a friend who was also on the transplant list and my Mom for a visit to the Trillium Gift for Life Headquarters just down the street from Toronto General. Mom and I had done quite a bit of promotion and awareness surrounding the importance of becoming a donor. We were given the grand tour and taken out for lunch where I remember eating rabbit cannelloni. Just before leaving we had a tour of the dispatch room where the actual calls come in from all around the country identifying a potential donor. My Mom jokingly said she was ordering lungs for Barry and I – just like being at Santa’s workshop.

Later that night everyone in the house had gone to bed. I was just about asleep and awoke to the sound of my phone ringing. Before answering it I knew it could only be for my transplant, I knew this was what we call the gift of life coming my way. This time it was a woman on the other end of the phone. Her name was Michelle. She said that I needed to make my way down to TGH as they have a matching set of lungs for me. I hung up the phone went across the hall to wake up my family and tell them the good news.

As I was waiting for my family to get ready to drive me to Toronto General Hospital I remember posting the news on Facebook. I read that post today.

I posted:

March 20 2010 12:51AM. Just got a nice wake-up call, on my way to the hospital Page # 2 on my way to TGH.”

The amount of support I was given from my family and friends was unbelievable, it definitely helped in keeping my head held high for the journey that I was about to face. I don’t remember the drive down that well but I do remember a few things. One was half way down we turned on the radio, the song “Everything is Going to be Alright” by Bob Marley came on at the part of “Rise up this mornin’, Smiled with the rising sun, Three little birds Pitch by my doorstep Singin’ sweet songs of melodies pure and true, Sayin; This is my message to you-ou-ou.”I took this song as a message as a good sign that things were going to be alright.

We get to the Emergency department of the Hospital and I go through the routine test (x-ray, blood test, and a whole bunch of questions) once finished I was sent upstairs to get ready for the operation and wait to hear back to see if the lungs were healthy enough to be transplanted. This part was a long waiting game as they kept pushing back the time for when I was to go down to the OR. We had arrived just after 1:30 a.m. on March 20th and it was now afternoon and still no word from the surgeons. The Delay was getting at me, I was starting to think maybe we shouldn’t go forward with this maybe this was going to be another false alarm. I was worried that the lungs would not be healthy enough to transplant. False alarms are very unnerving, it gives you false hope just at the time that your emotions are at their highest peak and your adrenaline is pumping through your veins. As hard as you are trying to keep it together news like that can make you break.

I am going to share something I wrote the first year after my second transplant.

A false alarm breaks you! I was told once that the world breaks everyone and afterward many are stronger at their broken places. I couldn’t let this waiting period break me again. At this point, I needed some help or guidance. Sitting there in silence after playing many games of euchre and sharing stories with my family I needed something to help me to hold on to my sanity. I had to overcome the terrible anxiousness that was spreading through my body. I needed something to help motivate me that this opportunity for a new chance at life was really going to happen.

I remember someone from my family telling me that I was the bravest person they knew. That one small sentence was my lifesaver. Telling a person they are brave helps them to become so. It helps them to face a crisis like this; it builds their strength for battle. A few hours later one of the Doctors came in to tell me that it was time to go down to the OR. My family followed behind as a large entourage. It was now just before midnight March 21st.

We get to a set of doors just before the OR and we are told that this is where I have to say goodbye to my family. As they were all telling me that they love me and wished me luck, I am sure they were thinking would this be the last they ever see me alive. I am pushed through the door. Just before the OR room, I am asked if I would like to walk in, I tell them Yes! “A man is successful if he gets up in the morning and gets to bed at night, and in between, he does what he wants to do.”I thought I might as well do whatever I could do before I went to bed. As I walked into the OR room or as I like to think of it “The Lion’s Den” there were many Doctors and Nurses working away getting things ready making sure they had everything possible for a “Battle Ground”. I entered the room, then was asked to make my way and climb up onto the OR bed. I climb up and lay down; I then had a few Nurses start working away by my side getting me ready for my battle. As I was laying there looking at the ceiling not knowing how this day would end the Doctors were getting ready to sedate me.

I was getting dopey and fading away I felt like I was about to fall off the edge of the world but just before that I remember telling myself that,

“There is no force on earth more powerful than the will to live. I can do this!”

As being my second transplant the doctors expected it to be a lot longer operation and had stocked up on supplies and blood as they didn’t know what lay ahead of them. They continued to work on me for hours I can only imagine what my family was going through waiting. However, there also was a family that just lost a loved one, a sister, brother, mother, father, or child, A LIFE! Even though they are closing a chapter in their own lives they are giving someone they don’t even know a new chance at living. People like this are the true Hero’s, putting their family situation on hold no matter what it is and thinking of someone else. This is the truest Gift Of Life.

As I am taken to the Recovery room, my family is there waiting for me. It was as if I was dreaming all over again and I was back at Sick Kids where I had received my first transplant. My family was nearby with masks and gowns on as they didn’t want to pass anything onto me, as in this state my body is very vulnerable to infection. Once again being in the ICU I would drift in and out of the battle, I may have survived the “Lions Den” but there was still a long path to recovery.

Chest Tube

My family kept everyone posted with my progress in the group I started called “Dan Pfaff is My Hero”. The main reason I started it was to allow anyone that wanted to know my progress could check in and see how things were going. In the end, I think it was one of the main reasons why I pulled through so well, my friends and family started posting well wishes and their favorite memory spent with me. Whether it was my sister, mom or brothers, they would read all the stories to me boosting my spirit and giving me more reason to win this battle. I thank each and every one of you that posted during that time. Back to what I said before, you tell someone they are brave and they will fight a battle for you. Sometimes the littlest things you can do to help someone get through the hardest times are these simple reassuring words.

A Light of Hope

As I said before a transplant isn’t a cure, but what it does is allow you to buy time. We are all limited by time however, if we use it to our fullest it is incredible what we can accomplish.

86 SPIKES and TWINE

For those that know me I take every day and fill it with as much as I can, I try to pass my attitude off on others and motivate them to do the same, try something new once and awhile who knows you may enjoy it. We see problems as stop signs but really we should see them as guidelines. If we waited for this moment where there are no problems and everything worked out all the time we would never begin. When doing so we make tomorrow often one of the busiest days of our lives. And if it’s an issue of fear that is holding you back remember this “You can conquer almost any fear if you will only make up your mind to do so. For remember, fear doesn’t exist anywhere except in the mind”. I came across this quote just before my second transplant and it helped me change how I felt about a lot of things. It’s true you have to believe and see for yourself and where you want to be.

Alert

Now that I have shared part of my transplant experience I ask you one of two things, if you are not already registered with Trillium Gift for Life I ask that you do so now. Discuss it with your friends and family let them know you want to be an organ donor its easy to do just go to https://beadonor.ca. You can think of it as a gift to someone you don’t know.

By being a donor you can be someone’s hero even their families’ hero. It is the most unselfish act that you can ever do.

Second request if you could take a moment and think of a memory or a time we have shared that you enjoyed, laughed and smiled – write it down and send it to me. Remember that memory is only possible because someone shared a Gift of Life with me.

Please take the time and share my story, as it is important to spread the awareness of organ awareness.

“Live every day of your life and don’t live with any regrets”.

Danger Dan aka

Dan Pfaff
Selfportrait

National Organ and Tissue Donation Awareness Week