GvHD of the lungs is often permanent. The goal of treatment is to keep the lungs from getting any worse.
My Protocol consisted of inhalers, anti-rejection medications and high dose steroids.
Inhalers: Ventolin/Albuterol, Atrovent – To help open airways, making breathing easier
Anti-Rejection Medications: Tacrolimus – To lower the body’s immune system to prevent rejection
Steroids: Prednisone- A steroid drug that lowers the activity of the immune system and slows the body’s response to disease or injury
There are many side effects from taking a steroid and sadly I most of them: Avascular necrosis (AVN) of the hips, knees and joints, cataracts in both eyes, type 2 diabetes, cushing syndrome, thinning hair and personality changes.
Cushing Syndrome – An endocrine disorder caused when the adrenal glands produce excess cortisol. Most common cause is long term use of corticosteroid medications like prednisone.
The one side effect I considered the “worst” was Cushing Syndrome as it completely changed my appearance. In a short time span I gained over 50lbs. My face and stomach became round and puffy, while my skin got painfully stretched out.
It was now winter and my breathing deteriorated so much that I couldn’t do simple things like go up the stairs, do chores around the and evem meet up with friends.
My doctor ordered a CT scan to take a look and accidentally a fungal lung infection was found.
This can be quite serious so treatment started immediately
Treatment: Amphotericin B “amphoterrible” : Used for treating a variety of serious, possibly fatal fungal infections.
Every day for the next 6 weeks I would go to the hospital for a 3-6 hour infusion. No exceptions.
The side effects were harsh; exhaustion, bone pain, stomach pain, extreme headaches (which I was hospitalized for) … it felt like chemo all over again.
I spent yet another birthday in hospital as I continued dealing with the harsh effects of Amphotericin B. On February 2, after 42 treatments I was finally done! My fungal infection was gone but even more damage had been caused to my lungs.
By March, after conferring with my respirologists at the University of Alberta Hospital, the decision was made to go ahead with a double lung transplant.
Before being eligible for a lung transplant, you must meet the criteria, do mandatory educational classes as well as complete a 30-day Physical Therapy program.
Here I met other transplant patients and hear their stories of how they came to be in the program. Many had COPD or Cystic Fibrosis, but all sharing the same struggle to breathe.
June 12 I was officially put on the Alberta lung transplant waiting list!
There are four lung transplant centers in Canada: Vancouver, Edmonton, Toronto and Montreal.
After being accepted I would have to stay close to home as the rules state you can be no more than a 4 hour drive to hospital in case a donor becomes available.
When a lung(s) becomes available, it is given to the best possible match, based on: blood type, size, HLHA tissue type, recipients medical condition, cross match compatibility, the length of time recipient waiting, and the number of lungs needed. The lungs can be male or female, but compatible blood type and similar body/chest size is necessary.
My First Call & “Dry Run”
I was ecstatic to receive a call for lung transplant and so quickly!
After arriving at the hospital I was told it was a “dry run”. This can happen when the donor lungs are removed, inspected and found not suitable for transplant. It is common to have many “dry runs” and although each time is disappointing, I had to remind myself that it’s better to be patient and wait for the right fit.
Meeting Amanda Nunes at UFC 215
Being on high dose steroids (prednisone) my vision began to slowly deteriorate over the years. It became extremely “cloudy” to the point where I could barely see what was in front of me. This was a very scary time and I didn’t want admit I had another problem to deal with.
In October I underwent cataract surgery for both eyes and toric lens’ inserted. I was overjoyed when I could see clearly again. This surgery is remarkable.
This was my first Christmas not in the hospital in 4 years! I looked forward to the future for the first time in quite awhile. Once I got my new lungs and could breathe again I knew anything would be possible!
As hard as this year having to accept a pending lung transplant, I lived day by day and tried to be happy. I went to lots of concerts with my brother and sister and even threw a Halloween party!
After 10 months and no progress, I hit a breaking point.
Edmonton held so many memories going back to my cancer diagnosis’ and now lung disease.
It was hard running into people I grew up with while sitting in a wheelchair attached to an oxygen tank.
Toronto was a city I had always wanted to live in but with my pending lung transplant I felt this was not possible.
After meeting with my lung team they agreed to make the referral but it would be up to the Toronto Lung Team to accept.
This would also be a gamble because once a referral is made to a different province, the status on my current waiting list (in Alberta) is dropped. As well, many hospitals require lung transplant patients to be 5 years cancer free before acceptance. At the time I was only 3.5 years out.
This was a hard decision but I knew it was time to go.
Physical Therapy 3x/week for one hour required until transplant! Treadmill, exercise bike, stretching and light weights.
My mom, sister and I moved to Toronto and found an apartment within walking distance to Toronto General Hospital!
Two days later I began the required assessment and got acquainted with my new team.
SEPTEMBER 18, I was officially put on the active waitlist at Toronto General Hospital.
Only 15 days later, I received a second call for transplant. Sadly this was another dry run.
After leaving a dinner with relatives my left hip completely gave out as I stepped out of their car. An X-Ray revealed it had entirely collapsed. I would need a hip replacement but not until after my lung transplant. Because of this, I would continue to be in a wheelchair.
I felt very “renewed” living in Downtown Toronto. Having new experiences occupied my time while I waited for the call.
At the hospital Rehab program I was able to meet new friends who came from all parts of Eastern Canada. Despite the age difference we were all sharing this unique experience. Us younger adults quickly bonded and often talked about getting our new lungs.
On January 2nd I turned 22 years old and spent my first birthday in Toronto.
The beginning of the year had many challenges.
An X-ray showed I had a pneumomediastinum (air bubble in my lung), elevated blood gas caused by an excess of carbon dioxide gave me painful headaches, but most worrisome was a microbacterium that was on my last bronchoscopy. Three different types of antibiotics for several months would be needed to treat this.
While inpatient on February 14 I got call #3 for lungs but they were not suitable. Three days later, I would receive call #4 and again it would be another false call.
How I Felt Getting Each Transplant Call:
Each time my phone ring, I always hoped it would be “the call”. Excited and surprised, I would immediately tell my family the good news. However, from my past experiences I was also well aware that it may not even happen.
Once you are called for possible transplant, you may be asked to shower and told when to go to the hospital for admittance. At this time bloodwork is drawn, an IV is started, and a chest X-ray is taken. Then the wait begins. Eventually you are told if the transplant will proceed
When going through cancer, I always felt like I was doing “something” in order to get better, whether it was chemo or procedures. This reassured me that I was heading in the right direction.
Going through the lung transplant process was a different kind of “hard”. Having to be patient and wait by the phone for over 20 months was yet another weight on my shoulders. Even on my happy days I felt I could never relax or be too joyous.
Shortly after midnight, my phone had rang and I was told there was a possible set of lungs for me!
This being my fifth call, I wasn’t overly hopeful but still excited. I was told to shower and be at the hospital by 8am with surgery scheduled for 5pm.
Once I arrived at Toronto General Hospital surgery was rescheduled until Saturday March 30th at 11am. That night I would stay in the hospital overnight but was allowed out in the evening to get some “fresh air”….
After having my surgery postponed several times throughout the day, I was given the go ahead. At 4:15pm the lung surgeon marked my chest and the O.R. nurse came to wheel me down for the operation.
And just like that I was going in. I was trying to “act cool” but inside I was freaking out. What helped calm me down was knowing that there was no choice. If I wanted to live a normal life again I had to do this. I began to think of the sacrifice my family had also made. For many years they pushed my wheelchair and hauled the oxygen tanks everywhere we went. This was for all of us.
Because I only live 2 blocks from the hospital, I decided to pick up Chinese takeout and spend the next few hours at home. With all the rescheduling I felt like my surgery would not happen anyway. My mom, sister and I watched Game of Thrones and enjoyed our food. If tomorrow was my day, I sure wanted to have a great last evening at home.
I returned to the hospital at 10pm (an hour later than my curfew, whoops haha!)
Looking back I probably wouldn’t have eaten such a big and heavy chinese meal but i assumed my transplant would be another no go!
My surgery began at 530pm and would finish at 2:30am on March 31st.
A problem developed where my heart stopped beating after the removal of my first lung. At this point I was put on ECMO, this machine acts as a lung to pump and deliver oxygen to the blood as well as heart pacemaker wires were put in place to help control my heart beat.
During surgery various tubes were put in place all with a unique purpose. Chest tubes, breathing tube, catheters, foley catheter, feeding tube and so on.
During surgery various tubes were put in place:
Chest tubes in my body cavity to help drain the fluid from my lungs
Breathing tube to help deliver oxygen to my lungs and assist my breathing
Catheter put in my neck to work as an IV delivering medications,
Foley Catheter to keep the bladder empty throughout surgery
Feeding tube for nutrients as I would not be able eat right away
After my 10 hour surgery I was taken into the I.C.U. My Dad had just arrived from Edmonton, Alberta to be with my mom and I.
In the I.C.U. a CT was ordered as my pupils were very large, dilated and not responding to light. The doctors were concerned of a possible blood clot causing vision loss. Luckily it was negative.
The day after surgery Physical Therapy came by to have me sit bedside in a chair for two hours. The therapist was surprised at how fast I could pivot my body in the bed towards the chair (the fastest she’d ever seen!). By day 3 I could walk an entire lap around the unit!
Various tubes were slowly being removed and the support oxygen was being turned down until my oxygen saturation level was stable.
Pain was my biggest complaint and by day 3 when the anesthetic wore off it was sevre. I was told by the nurse that by day 3-4 it feels like you were ‘hit by a truck!’
Each day another chest tube was pulled until all 4 were now gone.
The heart pacer wires were removed as my heart was now functioning properly.
Daily I got 2 heparin needles (blood thinner) to prevent blood clots from immobility and I blew into my hand held spirometer to keep my lungs moving and prevent fluid build up. Rehab services came to help me walk laps around the unit 2x a day.
Most of the day was spent sleeping and recovering. When I was awake I loved watching tv and music videos with my sister.
The pain was constant and I could never seem to get ahead of it.
On Day 6, two needles were inserted into my back called a nerve block where a Rovicane drip delivered some pain relief. Everything seemed to be going okay until…
I started to numb up on the entire right side of my body. Immediately I called for the nurse and we stopped the drip.
My mom was shocked! The last memories I had were of summer and coming to Toronto. My heart rate jumped to 155, blood pressure dropped to 86/59 and I spiked a fever.
By midnight I was improving. A MRI of the brain revealed a small clot but not enough to explain the symptoms I was having. Without any other explanation the neurologist called it a FND-Functional Neurological Disorder.
F.N.D. : Functional Neurological Disorder
Caused by a problem with the functioning of the nervous system, where the brain is not sending and receiving signals properly. This can be brought on by stress or physical and mental trauma. Functional neurologic disorders are related to how the brain functions, rather than damage to the brain’s structure (such as from a stroke, multiple sclerosis, infection or injury). This condition usually resolves itself over time.
I always suspected something more serious happened to me than a neurological disorder that would “go away with time”. I continued to have numbness down the right side of my body from head to toe, patchy blind spots out of my right eye and sensation loss of my skin, tongue, and face (causing me to drool). I would not find out that my “FND” was an actual stroke until 5 months later. But more on this in a bit…
Besides dealing with the FND, I recovered on schedule. My chest staples and stitches were removed, I weaned off my pain and nausea medications, and began to start eating solid foods!
My Last day:
I was given my last heparin needle, the I.V. line was removed and I had my very first shower in 20 days! My naked body told a big story all its own. Bruises from daily bloodwork pokes, multiple I.V. and chest tube marks, plus the railroad track running across my chest and sides, it looked like a war zone!
Being at home was surreal. The last time here I was different person.
We spent the night watching Game of Thrones and eating my favourite foods. The weight on my shoulders sure felt a lot lighter now. There were still many challenges ahead but for now I would enjoy the night knowing the hardest part was now complete.
After having a transplant you must take anti-rejection medications for the rest of your life. This includes steroids to reduce inflammation and immune suppressing medications that lower the body’s ability to reject a transplanted organ.
Because the immune system protects your body from “invaders” like bacteria, and viruses, being on immune suppressing drugs lowers the protection it gives your body making you more susceptible to getting infection.
Several months later in August, my dental braces were removed and another brain MRI was ordered.
Because of my metal braces the previous MRI did not see the stroke I suffered during transplant. (This is why it was declared an FND.)
A 2cm clot was discovered from imaging and finally explained my continued right side numbness and partial vision loss. Finally I had this confirmation but the best window of opportunity for improvement had passed.
I finally had closure, but I also realized the damage was done and I would live with my numbness and vision loss forever.
Side note: My drivers license was pulled indefinitely because of this.
Over the rest of the year I endured some complications but luckily none were involving my lungs:
-Pancreatitis in May needing hospital admittance
-Liver stones on three separate occasions, with surgical removal by ERCP in July and September. (VERY PAINFUL!)
-Shingles in both September and November requiring a 14 day hospital stay with antibiotics and pain medication
Inflammation in the pancreas.
In May I was having severe abdominal pain, fever and vomiting due to one of my anti-rejection meds. This was a very painful condition but improved quickly after switching to another medication.
Hardened deposits of bile that collected due to the narrowing of the ducts in my liver.
On two occasions-July and September I was in hospital with severe abdominal pain. An ultrasound showed grey areas and the stones were removed by a procedure called an ERCP.
What is an ERCP:
Endoscopic Retrograde Cholangiopancreatography is a procedure that allows your doctor to see the small tubes inside your body called the pancreatic and bile ducts. While you are sedated a thin tube is inserted through the endoscope in your esophagus , dye is injected and X-rays taken. If stones are seen they can be removed with a special tool attached to the end of the thin scope or if widening of the channels are needed an incision can be made to remove the blockage.
A viral infection caused by the varicella zoster virus, the same type of herpes virus that causes chickenpox. Unfortunately I had shingles in September and again in November. It was so painful, blisters were covering my hips and abdomen. A course of antiviral medicines were needed both times and they were very hard on me both physically and mentally.
Eager and excited to show my friends the “new me” I went to Edmonton Alberta to spend Christmas with everyone! My friends would be were shocked to see me without an oxygen tube in my nose and breathing on my own.
This was a big year for me but I made it through! Reflecting on the past years, it felt incredible to have some independence and not have to rely on oxygen anymore. For the first time in a long time I felt renewed and looking toward a new start. The cancer was behind me and now I was breathing with new lungs.