| Pre-Transplant, |
during my stable years.
After high school, Joel and I left our hometown in Sudbury for the big bright lights of Toronto where we were to further our studies in College. As starving students, walking was our ultimate mode of transportation. But when my walk to school and back started to get more difficult, I started to question whether there was something wrong with me. Joel, however, thought that I might just be out of shape and suggested that I go for a jog with him. And so I tried, and failed royally. It was then that I knew I had to see a doctor. Shortly after, I was diagnosed with a mild case of asthma and was sent on my way with puffers and such to treat it. Me not being a doctor, did not think anything of it. Many weeks had gone by and I still had yet to see any improvement in my breathing, even while on medication. One hot summer day, I had what I thought was an asthma attack while working outside at work. I immediately rushed over to my bag where my Ventolin had been hiding and sucked in a few puffs. But it was not giving me the relief that this medicine was designed to do. In fact, it was making my breathing worse! It was then that I knew there had to be more to this. So I phoned up my family physician and explained how the medicine was not helping any of my symptoms and he suggested I stop taking them. Unfortunately, he never pursued or investigated any further. This seemed odd to me and was quite frustrating, but as a young adult still finding her way into the world, I didn’t want to question my physician. After all, he went to medical school, not me.
Not too long after being removed from the meds, I woke up one night with excruciating sharp pains in the chest which only got worse anytime I tried to lie down. At this point, Joel was getting very concerned and took me to emergency. After several tests were done, the doctors at the hospital discovered that I had what they called an over-inflated lung. Basically, my lungs were being aggravated by something, but they just could not tell what. And so they decided to refer me to a respirologist.
I saw Dr. Born for the very first time in September of 2003, exactly one year after I started experiencing symptoms. He immediately sent me for a few tests including a heart echo, where they finally discovered that I had Pulmonary Hypertension. But Dr. Born was not convinced that this was my final diagnosis. He truly believed that my PH was secondary to something else, and did further investigations. His suspicions were leaning towards me possibly having a cancer called Mesothelioma or what most people know it as “the asbestos cancer." Now this truly did not make any sense to me as I had never in my life been exposed to asbestos, but weirder things have happened.
I was referred to Dr. Hutcheon, a surgeon who would perform a biopsy on me to either prove or disprove this theory. Dr. Hutcheon however, had some reservations about this possible diagnosis and wanted to explore a notion of his own. What if all this was due to blood clots in the lungs? So before putting me through an invasive surgery, he opted to look into his idea first by sending me for a chest CT scan with dye. Low and behold, he was right! The test showed multiple micro blood clots just chillaxing in my lungs having a merry old day. Thus, I got a final diagnosis of Chronic Thromboembolic Pulmonary Hypertension or CTEPH.
I was immediately sent to the Toronto General Hospital Thrombosis Unit, where they had already begun the steps necessary to start me on a much needed blood thinner treatment. But one mystery still remained…where were these clots coming from? Many tests and examinations following that proved to have no impact at all on unlocking this mystery. I had no family history of clotting, no weird abnormal gene in my blood and my recent activities showed it to be impossible for it to be a lifestyle thing. We were all clueless. Meanwhile, as the focus was primarily on the source of my blood clots, my PH was being completely put on the back burner and was not being treated. After hounding my doctors on that very fact, they finally referred me to a respirologist named Dr. Granton who they had mentioned to me was, and I quote “a doctor that had an interest in PH."
|6 months post transplant:Went up and down |
what felt like a million stairs at this arena.
Did it without feeling short of breath at all
In the midst of this mess, Joel and I decided to move back home to Sudbury to be closer to family. We were young, afraid and unsure of what to do next.
The years following were a non-stop roller coaster ride of ups and downs. I had a wacky amount of tests done, saw more than my share of doctors and had way too many hospital stays. And still, no explanation was found on how I got those blood clots in the first place. Many different treatments were tried and played around with to treat both my CTEPH and my embolisms. Dr. Granton even tried his luck on giving me Viagra, but it actually unfortunately made me feel worse and so the medicine was stopped. Throughout those fun filled years, we also discovered yet another mystery; there were random holes slowly forming in my lungs and not one doctor had a clue what was causing it. After several tests were done, one open-lung biopsy, one needle biopsy and what felt like a million sputum samples, they discovered that it was a strange bug that was causing mayhem in my lungs and was the source of all these holes. It is called Mycobacterium Xenopi and it was making itself way too comfortable for my liking. Apparently lung tissue was its food of choice. A hard core antibiotic treatment was in order and it took a whole two years to finally kiss it goodbye! To this day, the doctors still have no idea where I picked up that sucker.
On top of all that, my knee problems had re-emerged with a killing and it was not letting up. In fact, the pain was starting to spread to my calf, my thigh and basically my entire left leg. This problem was supposed to dissipate in my twenties, but it was only getting more aggressive. This was seriously starting to concern me and so after a visit to my family physician, he decided to send me to physiotherapy in hopes that it would help. It was there that I learned that my knee pain/swelling was not acting at all like one affected by Patella Femoral Syndrome and that none of the physio therapist had ever seen the likes of it. Meaning, they had no idea what I had, but they were certain it was not Patella Femoral Syndrome. What was I supposed to do with this information?
By November of 2006, Joel and I had had enough with our lives completely evolving around my
|4 1/2 months Post-Transplant, bought this cup |
specifically because of the saying. So appropriate.
After finally getting settled in our new home, my thoughts started to drift towards what the physio therapists had said about my knee not being my original diagnosis and so I decided to finally get a second opinion from another orthopedic surgeon, Dr. Habib. Upon meeting me, he immediately decided to send me for the one test that I had yet to go for, an MRI of the legs. I was truly relying on this test to give us some kind of answers as I was frankly getting tired of my body producing so many unsolved mysteries. My body unfortunately did not want to wait the few weeks till my appointment as the pain was progressively getting worse and was actually starting to affect my ability to walk.
Joel acted out of concern once again, and took me to emergency. Over the years, I have dealt with many difficult situations involving doctors who are unaware on how to approach my rare diseases and this emergency visit was no different. After explaining to the doctors not only the pain I was feeling in my left leg, but my entire health situation, they unbeknownst to me, sent me for what is called a D-Dimer blood test. Without giving me any explanation at all, in a very panicked manner, they arranged for me to see the Ottawa Thrombosis Clinic the next day. In fact, they said if I didn’t go first thing in the morning, they would admit me to hospital. Like many, I am not a very big fan of the accommodations a hospital can offer and so I gave them my word and went on my merry way. The problem was that the much anticipated MRI was scheduled for that very morning! So I decided to go to the MRI first. Now this is probably not one of my proudest moments, but in all honesty I truly believed at the time that the ER doctors were overreacting slightly. I mean, it would not have been the first time and in my defense, they really didn’t explain to me why they needed me to go and what the test results showed. So going by that, I really felt that the MRI was more important. Of course when I didn’t show up at the thrombosis clinic first thing in the morning, they immediately called me to express how important it was that they see me. And so Joel and I made our way there.
Once we arrived, it was clear to me that the ER doctors failed to mention some important information to me as I was instantly lectured by both the admin staff and the doctor on how irresponsible it was to disobey the doctor’s orders. Apparently, my D-Dimer test results were astronomically high which indicated that I was perhaps clotting. And after a leg doppler was performed, it was indeed confirmed that I had a DVT in my left leg, which would absolutely explain the unbearable pain. But I was on a fairly high dose of blood thinners, so how was this possible? Well apparently that dose was just not high enough. From that moment on, Dr. Forgie became my regular hematologist and would for years to come be involved in my care. After a few adjustments to my meds, Joel and I were finally sent home.
In early February of 2007, not even a month after my first encounter with Dr. Forgie, I landed yet again in emergency with severe chest pains and a serious lack of oxygen. After a chest CT with dye was done, the doctors were able to indisputably tell me that I had new blood clots to the lungs. So even with the new dose of blood thinners, I was still clotting. At this point, Dr. Forgie was extremely concerned and was determined to find the source of the clots as she felt it was the only way to solve this matter. By this time, the results to that very important MRI I had gone for was finally in and it just so happens that Dr. Forgie had access to it because it was done at the hospital. A lucky find indeed, as it showed that I had a very large Arterial Venous Malformation(AVM) in my entire left leg. What is this, you ask? It’s a knotted mess of extra veins and arteries all balled up together. It’s very rare and is mostly found in the brain, and so to find one in my entire left leg was definitely an interesting find. Apparently, I was born with this lovely thing and it has been shooting baby micro clots up to my lungs since birth. But as the clots were very tiny, it took a whole 19 years before my body seriously started reacting to it. The only true indication that I had, but would have never known was the pain I felt in my leg back in high school. Who would have thought? So, an IVC filter was inserted to protect my lungs from any new clots and another adjustment was made to my blood thinners.
The months following felt like a constant vicious battle of me vs. the blood clots. New clots were still forming and so my medicine required even more changes. My IVC filter had magically shifted which meant that it needed replacing and because of the extremely high dose of blood thinners I was on, bleeding was starting to become a serious problem. Life was definitely challenging us in ways we had not even imagined.
In the midst of all that drama, my PH care was transferred over to the clinic in Ottawa where I met Dr. Mielniczuk and Dr. Chandy for the very first time. There, they decided to try treating my PH with Bosantan or Tracleer. Unfortunately, after only being on this medicine for a few months the doctors decided to stop it as it was not producing the results we expected and was actually causing severe headaches. So once again, my PH was being untreated, but it was manageable.
From 2008 on, years would pass with my health being pretty stable. I did incredible things and am so grateful for those years! I worked a full time job, traveled to some amazing places, experienced exciting new things like skiing, and did my best to try everything and anything at least once. I enjoyed and cherished every waking moment with friends and family, and had quite a few good laughs as well as some meaningful conversations. I watched as my wacky childhood friends grew up, got married and became extraordinary mothers. My baby brother also made me an aunt of three and I am still very impatiently waiting for more nieces and nephews that I can spoil. But probably the most important celebration that occurred in those years would have to be when I finally got married to the man of my dreams, my high school sweetheart; Joel. We also bought our first home, which was oddly enough down the street from my brother. Life was good and we were so proud of ourselves for learning the tricks of living with CTEPH. In fact, we thought we were pros at it! We had it completely under control. But how can you possibly control something like that?
|3 months Post-Transplant, Bought myself a fancy mask to help |
with germ preventions. As my immune system is suppressed
now, this is an unfortunate reality of being post-transplant.
So an appointment was scheduled to see Dr. Rubens so that I may be evaluated for the infamous Pulmonary Thromboendarterectomy (PTE) surgery, where they would remove those nasty clots permanently. I had been evaluated for this before but was told that my blood clots were too small and too far to reach and so I did not qualify. At this point, there was no harm in trying again, but regrettably the results were the same. This is finally where the subject of a double-lung transplant came into the picture. By this time I was 31 years old.
Being told that I needed a double-lung transplant in order to continue living was unlike anything I have ever experienced before.
I felt helpless, scared and yet totally ready for a fight. After all, I had been fighting this battle for a very long time and I was not about to give up now. So in April of 2015, Joel and I picked up our bags once again and made the grand move back to where it all began, Toronto. Here, I would be put on the transplant list and would wait for that amazing life-saving gift. Why was the move necessary you ask? Well, there are only 6 hospitals in Canada that perform this miraculous surgery and Toronto General Hospital, being the closest one to me, requires all patients to live within a 2 hour proximity to them. Finally, after a few complications and bumps in the road, I was officially listed on June 22 2015.
Although I expected the wait to be long and agonizing, it surprisingly went by pretty fast. The hospital actually keeps you quite busy with appointments and physio that it truly helps fill up those days for you and keeps your mind at ease. After a few months of being listed, my health had deteriorated even further and I was admitted to hospital. At this point, the doctors decided that my heart was under way too much stress and needed a little help until a matching set of lungs came in for me. They decided to put me on ECMO, a device used to help deliver oxygen to the body. This would give my heart the much needed break it was longing for. Dr. Granton was back into the picture now and was the lucky one to shockingly tell us that the machine would be hooked up directly to my heart and not through the neck or groin as Joel and I had researched. This meant open heart surgery. But at this point, what did I have to lose? So I put my big girl panties on and was rolled into to surgery. I was on this machine for 6 days, when the doctors came into my hospital room with best news in the world; they had finally found a set of lungs for me.
I am now 6 ½ months post-transplant and I feel amazing! Words cannot express enough how grateful I am to my donor and their family for this selfless gift they have given me. They have given me time to share more incredible adventures with my family and friends, especially my truly outstanding husband Joel. Remember when I told you that he was the most important piece of this puzzle? It’s because without him I would not have survived this so effortlessly. Without his words of encouragement, his love, patience and understanding, this journey would have been a lot more difficult. I say this because so many people focus on the patient; on their strength and their will and their ability to get through any difficult matter. Yet a lot of these people would not get through these ugly times without the love and support of another. I was lucky enough to have more than one person by my side, including my super amazing parents who sacrificed so much and went above and beyond just to be there for me. But as my husband, Joel was at the center of it all. He was there for me when I could not walk anymore and needed to be pushed in a wheelchair. He was there for me when bending down was virtually impossible without passing out and I needed someone to tie my shoes for me. And he was there for me when life took a sudden turn and we needed to put everything on pause and head to Toronto for transplant. And so this is my homage to all support people out there, THANK YOU FOR EVERYTHING YOU DO!
Joel and I are now back in Ottawa and I feel like I can achieve anything. I no longer fear stairs, or hills or parking lots or walking in general. I get excited over things like cleaning the house or being able to NOT park in handicap parking for once. I can play with my nieces and nephews without running out of breath and I can sing and dance again!
|4 months Post-Transplant, |
Went to gala for organ donation awareness.
Danced the night away here!
Although my journey may seem like a long list of unfortunate events I can honestly say that I am in a way grateful for them. I am proud of my story and how it has shaped me as a person. I would not be who I am today without it and am so happy with the “me” that I have become. Every scar on my body has a tale to tell and will forever be a reminder to me on how precious life really is, and how courageous and strong I can truly be even the worst of times.
*Editor's note: Did you know it only takes 2 minutes to register to become an organ donor in Ontario? Check your status or sign up here http://beadonor.ca/