PHighter Friday: Elsa

My name is Elsa. I am a South African citizen, currently residing in Australia. I was born with congenital heart disease and a VSD was closed at age 10. During the procedure it was discovered that I had PH and I was left with a ASD that could not be closed due to the pulmonary pressures. I was not put on any medication at the time and was just sent home.
I suffered from frequent chest infections and in 1986 I ended up in hospital for 6 weeks with pneumonia and water in my heart sack. I nearly died but with the grace of God and my mother's persistence to insist a different antibiotic I pulled through. I started drinking Garlic and Parsley, and cod liver tables every day and until today I never had a chest infection again. Please note that this is my personal experience and in no ways intended as a medical opinion.*
I met my husband and got married in 1993. We were married for 5 years before we decided to start a family, but knowing the risks we consulted a intern specialist before and we were advised not to have a baby and rather seek alternative options. My husband's sister offered to be a surrogate mother and our baby boy was born healthy and strong without any health issues.

In about 2004 I was getting out of breath more easily and was sent to the city to see a specialist. He was brilliant and started me on Adalat, Spiractin and Aspirin. I was advised to start using nocturnal Oxygen too. This was the first treatment I got since 1983 when PH was diagnosed. It made a huge difference in how I felt and the oxygen at night would charge my batteries for the next day. I have always known my limits and would live accordingly but the new medication and oxygen just made my life easier.

I believe in living life as normal as possible and I have been working as a qualified hairdresser. When we moved to a rural location I opened my own hair salon from home, and worked full-time from 9-5 as a stylist. I had a full time maid that would help with chores in the house. This way I was free to work in my salon.

In 2011 PH south Africa was established and I was asked to be on the committee to raise awareness. We had a very active group, but in 2013 my husband was offered a position in Saudi Arabia and we moved to Jeddah. At first I thought the heat would affect me, but it did not, and living at sea level made a huge difference in how I felt. I had more energy.

I have joined the Saudi Association for Pulmonary hypertension as a honorary member assigned to Patient support. As a foreigner to a closed Muslim community that was a very big honour. I have learned a lot about the disease when I was invited to the International seminars we had in Oman, Abu Dhabi and Jordan.

In 2015 my pressures went up to 120 and I was put on Sildenafil as a treatment. I am using 75 mg of Viagra, and my pressures have since dropped to a stable 75.

Earlier this year we moved to Australia and I decided to have a career change. I have taken up a course in Pastoral Care and Dementia, and I am volunteering at the local nursing home 3 times a week.

I have always been a positive person, and I would not let my condition define me. I live life to the fullest, and believe that a positive attitude to live is beating the disease with at least 50%. If you look around you will see people that is worse off than yourself, and that keeps me going and motivates me. I live in a 3 level house and the stairs is a challenge, but I do one level at a time. I go for lengthy walks on a level surface and that is the best exercise for me. It is important to listen to your body and rest when you need it.

I am 43 years old now, and I am still going strong. Don't give up hope!

A doctor once told my mother I would not live to the age of 10....and gosh did I outlive that prediction. Live life to the fullest of your ability, and stay positive and strong. Thank God for every

day as it is a precious gift.

Take care and feel free to join my Facebook page SAUDI ASSOCIATION FOR PULMONARY HYPERTENSION - SAPH.

*The PHight or Flight Project does not endorse or recommend taking any medications, including natural supplements without discussing them with a medical professional. Please be sure to discuss your treatment options with a professional, such as a specialist. The PHight or Flight Project does not offer medical advice, and the opinions are based solely upon the writer.

Tips for Keeping a Pulmonary Hypertension-Friendly, Low-Sodium Diet

Many people living with Pulmonary Hypertension are on a no- to low-sodium diet. But trying to keep to such a diet can be very challenging, and create obstacles for dining with friends, even for preparing your own meals.
People with PH are advised to maintain a low-sodium diet because salt can cause water retention. The volume of blood that your heart has to pump increases when too much water is stored in your tissues, making a diet high in sodium dangerous for people with PH. Hearts with PH are generally working overtime, which is why a low-sodium diet is so important.
You should always talk to your healthcare provider and PH specialist about your diet. Your doctor will be able to advise how many mg of sodium you can consume per meal/per day, which will differ from person to person.
Below are some general tips I have learned for navigating on a low-sodium diet.

1. Tips for Eating at a Friend’s House

If you are invited over for a meal at a friend’s or family member’s house, be sure to discuss your dietary needs with them ahead of time. At first I found this difficult, and felt like a major pain. But I quickly realized that although PH is unique, having dietary restrictions are not.

• If you are going over for a meal at another person’s house, you can always offer to bring a meal for yourself. That way, hosts aren’t obligated to create something special for you, and neither one of you will miss out on the bonding that happens over a nice meal.
• Eat a snack or meal before heading out for dinner. If friends are serving salad before dinner, you can always snack on that and bring or make your own dressing if they do not have a low-sodium salad dressing available.
• You can offer to come over after dinner for tea and dessert if it will be a longer dinner party.
• Don’t be afraid to bring your own condiments or whatever you need to ensure you have a meal that is safe for you.

2. Tips for Dining at a Restaurant

When dining at a restaurant, be sure to let your server know that you cannot have salt in your meal. It is always easier to add a pinch of salt for flavoring, than to try and take salt out of an already prepared dinner. I find that many places also over-salt food, making it risky to eat prepared meals regularly.
When I go out to eat, I explain that I cannot have salt due to a very serious heart issue. I say this because I look healthy and, because of this, servers and chefs do not always take my request seriously. Again, it can feel a little strange explaining this, but I have gone out with friends who have celiac disease or are vegan, and they also have to make special requests. Failure to make a request understood has resulted in a few episodes where my heart felt like it was trying to self-destruct. Not fun.

• Be sure to ask what the chef would recommend for your request.
• Fine dining restaurants and cafés that serve food made from fresh produce will be able to better accommodate your needs than a fast-food chain.
• Some places will be happy to make something off-menu for you. Your best bet is to get a protein that isn’t seasoned ahead of time, along with some veggies.
• Ask for pre-made sauces with salt to be served on the side. (This way, you have better portion control of how much salt you consume.)

3. Tips for Preparing your Own Meals

Salt is hidden in everything, from butter to broth. Below are some tips for creating meals that will fit your sodium-restricted diet. Preparing food can be tiring and taxing, especially for those of us living with a chronic illness. Don’t be afraid to ask for help if needed. Take advantage of those days you feel well enough to cook, and freeze leftovers that can be heated up for a day where you don’t have as much energy.

• If you are making your own meal, be sure to stay clear of recipes that require a lot prepackaged items. An example would be a curry recipe that calls for a pre-made jar of curry sauce for butter chicken.
• Look for a recipe that will actually instruct you on how to make the curry sauce. You can alter any recipe as needed. Omit the salt completely, and substitute low- to no-sodium products for products the recipe calls for.
• Avoid prepackaged foods and meals as much as possible, as they will contain more sodium.
• Always try to use products that contain either no or low sodium, such as no-sodium broth and butter.

If you find that your meal is a little bland, there are several companies that make low- to no-sodium seasonings and sauces. One company you will be able to find anywhere is Mrs. Dash , which offers salt-free seasonings and marinades. Another, called Mr. Spice, creates organic, no-sodium marinades and sauces. Some super markets also offer their own brands of low- or no-sodium cooking products, such as broth.

*This post was originally featured on Pulmonary Hypertension News.

4 Things Not to Say to Someone with Pulmonary Hypertension

"I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult to feel like I was biting my tongue in an attempt not to hurt other people’s feelings, even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation."

Please visit my blog Life With PH over at Pulmonary Hypertension News to read "4 Things Not to Say to Someone with Pulmonary Hypertension."

The Worst Advice You Can Give to a Pulmonary Hypertension Patient

I’ve spoken previously about the day that I was diagnosed with pulmonary hypertension. There are a few moments that stick out from that day that will probably stay engraved in my mind for eternity. When I was first diagnosed, the doctor promptly gave me a life expectancy. It couldn’t have come at a worse time. I was 25 and just starting my career after working less than ideal jobs since the age of 15. I was obviously devastated to hear that my life was ending during a time it felt like it was just beginning. It felt like someone crumpled up everything I worked so hard for and threw it in the trash. As I started to cry my doctor said, “Any one of us could die at any time. I could die in a car accident.” This was the first time I heard this expression, but sadly, it wasn’t the last time.

As the days, weeks, months, and even two years have dragged on, numerous people have told me that anyone could die at any point, that the future is promised to no one. While I am aware of everyone’s mortality, living with a fatal illness is a very different experience than the advice I have been given. I know that the people who have said that “anyone could die at any moment” and “the future is promised to no one” are attempting to comfort me. However, these pieces of advice are often coming from a very privileged source. The doctors who have told me this are able to work full days and have a family. The people my age who have told me this are purchasing their first homes and traveling.

The advice that “the future is promised to no one” is often said in an attempt to equalize my situation with the rest of the population. Unfortunately, I am not like the majority of the population. I had about a one in a million chance of developing idiopathic pulmonary hypertension. Because the disease is considered rare, Canada does not have access to less invasive medications that have been available on the market for nearly a decade. Because PH is so rare, medications are very expensive, meaning that new medications are not always introduced in Canada, or are not approved for funding.
Pulmonary hypertension causes damage to the heart and lungs, eventually leading to organ failure and death. It is a progressive disease that leaves many people breathless and disabled. I myself am disabled because of pulmonary hypertension, and am oxygen-dependent for certain activities. I was on oxygen 24/7 for over a year after diagnosis. Knowing that PH is progressive, and that I might be that sick again, is very frightening.

While death is promised to us all, there is a difference between living with a fatal illness and living without one. Although I try my best to live in the moment, there is often a dark cloud hanging over me. I worry about what will happen to me. I worry about the slow progression of the disease leading to further disability and death. Life is filled with difficulties and tragedies. However, not everyone will understand the feeling of the dark cloud that living with pulmonary hypertension can put over your life. Able-bodied people who say that “everybody dies” in an attempt to over-comfort are forgetting one of the scariest things of living with a fatal disease: the progression.

In some ways, fatal illnesses are almost romanticized by popular culture. There are so many movies who have used this plot to write a love story. While I am very lucky to have someone who has stood by me through all of this, I know that having a fatal illness is not a selling point. It can create a lot of chaos and complications. My life revolves around medication, doctors’ appointments, tests, restrictions, limitations, disability, and oxygen. I know that not everyone is as lucky to have the kind of love I have in my life. Life-threatening diseases are scary, and sometimes they chase people out of our lives.

I often feel like I am living a fine line between quality and quantity in my life because I choose to do what I can while I can still do it. While all of us will someday die, not all of us will have to live with the burden of having a fatal illness, especially as a young adult.

What’s the worst piece of advice someone has given you about living with pulmonary hypertension?

*This article was originally posted to Pulmonary Hypertension News

Pulmonary Hypertension and "The Spoon Theory"

Do you know what the Spoon Theory is? Have any of your friends called themselves a Spoonie?
I didn’t know what the Spoon Theory was until a few months after I was diagnosed with pulmonary hypertension. I found out that I was Spoonie after reading more about the theory. If you have a chronic illness, like pulmonary hypertension, you might relate to the Spoon Theory as well.

Read more about Pulmonary Hypertension and "The Spoon Theory" over at Life with PH

Who Should Raise Awareness for Pulmonary Hypertension?

I am excited to announce that I have a weekly column called "Life with PH" over at Pulmonary Hypertension News. Please be sure to visit the source below to read my first entry about my experience wearing oxygen in public, and whether it helped raise awareness for PH.

Who do you think should be responsible for raising awareness for PH?

PHighter Friday: Tina P.

 Pre-Transplant,
during my stable years.

I met Joel in high school when I was 16 years old. We were young, selfish, foolish, naïve and completely unaware of what life had in store for us. I tell you this as he is an important piece of the puzzle that is my life. He is the most important piece. Back then, things were great! I was actively playing sports, attending school dances, was greatly involved in school committees, managed a part-time job and all while still living that crazy free-spirited teenager lifestyle. My only complaint health wise was that my left knee and surrounding area was always hurting. But, after a visit with a doctor it was confirmed that it was nothing more than a common sports injury called Patella Femoral Syndrome that would eventually go away. Or so we thought…

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

To be honest with you, before I met Dr. Granton, my knowledge on the severity of PH was pretty slim. I didn’t even know what PH was until I was diagnosed! It never occurred to me once that this was the very thing that would one day drive my life towards the path of a double-lung transplant. I mean truly everyone was so focused on the blood clots and their creator that I guess in some ways it told me that PH was nothing to be concerned about. Boy was that an understatement on my part!
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.

health. We desperately needed a change and we wanted to finally start living! So we picked up our bags and made the grand move to Ottawa. Why Ottawa you ask? The better question is “Why not?”.
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.

By the end of June of 2014, I was finally taking a well needed vacation from work. Joel and I had no special plans, but to relax and enjoy the beautiful June weather here in Ottawa. In essence, we were doing a stay-cation. It was something I was so looking forward to as the past few months had been extremely busy in both life and work, and I was getting tired. My breathing even seemed to be slightly affected, but I pond it off as me needing this wonderful time of doing absolutely nothing. Unfortunately, by the end of that week I didn’t feel any better. In fact, I felt way worse!  In the past, it had always been my clotting issues that had given me a run for my money and so I assumed that whatever was making me feel this terrible must have something to do with that. So I phoned up Dr. Forgie and was seen that day. As per usual, she sent me for a chest CT scan with dye to see if any new clots had emerged, however, the results showed something entirely different. My heart seemed larger and was showing signs of my PH having worsened.  My PH doc Dr. Chandy was immediately notified and an appointment to see him along with a few other tests were scheduled.  He also had mentioned starting me on this new drug that was specifically catered to CTEPH patients and was supposed to make me feel fantastic. It was called Adempas. Sadly, I never made it to those appointments as after another visit to the emergency department I was admitted to hospital. I spent several weeks in and out of hospital that summer. I was however still put on the Adempas treatment, but after a few months of it and the results not being as expected, Dr. Chandy decided it was time to look into other avenues.

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!

If I could give anyone who is currently going through the transplant process right now any words of wisdom it would be this… I know it’s scary and you may feel at times like you can’t do it, but the truth is YOU CAN! Trust me when I say this, it is totally worth it! Just stay positive and remember what’s waiting for you on the other side, being able to breathe again, being able to live again! You are strong enough and you are worthy.

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/