I have a story for you that I am finally ready to share and update you all as a group because I am one hell of a proud woman right now.
Four years ago I was diagnosed with a life threatening lung disease called Pulmonary Arterial Hypertension (PAH). I was coughing a lot and getting very fatigued doing any physical activity or stairs. After some tests from my doctor it was discovered that this was idiopathic with no known cause of development. The disease causes a persons arteries and vessels within their lungs to constrict, creating high pressures and a difficulty with blood flow. The heart is so greatly affected as it has to work harder to circulate things and the right side was enlarged from being strained. I began taking oral medication for this to try to dilate my vessels to slow the constricting. I was monitored closely after being diagnosed but I didn’t fully understand the severity of things.
In 2016 I made a huge change in my life and moved to Calgary. My medical info was transferred over to specialists here and they continued to follow me. It was hard on me and very stressful. My disease seemed to get worse, causing me to be very sick and nauseous and passing out here and there. Everything felt like a huge task and I was overwhelmed. Once the end of 2016 came, my doctors decided something more aggressive needed to be done to help me. I was put on a continuous IV infusion of a strong vasodilator to help slow the progression of my PAH. They told me I would have to carry this with me 24/7 and make my own medication and manage it along with my oral meds.
January of 2017, I was flown to Edmonton University Hospital and had a line surgically placed in my chest that hung out and was attached to a small pump holding the medication. With severe side affects I began this medication, increasing to a dose they thought would help bring the pressures down in my lungs. I was really sick for most of the year, in hospital and out. It made me lose a lot of weight and I wasn’t able to eat much for months. Slowly my body got used to the infusion and I was able to work again a couple times a week and begin my sewing venture. Every once in awhile I would have to increase the strength again so it continued to slow my disease. My specialists continued tests and then December came around I felt very sick again, getting fevers and coughing again. I was back in the hospital for almost the whole month because the line they surgically placed in my chest was now infected. They had to replace the line and I was on IV antibiotics for over a month. I was also put on a blood thinner as another treatment for PAH. Once that was dealt with and I had no infection left I was able to go back to work and continue a somewhat normal routine again. Another test came in February to show where the pressure levels were at in my lungs. They were not much lower so my doctors decided to increase my IV med a lot to try to help more. This was going ok.
On March 1st I had another scare. I woke up at 2 a.m. coughing up blood and was taken by ambulance to emergency then transferred to my regular hospital the next day. A CT scan was done and they found an aneurism in my left lung due to such high pressure and my arteries being strained and bulging in spots. They were concerned because I was at high risk for bleeding again. After lots of discussion I was flown to Edmonton University Hospital again to see if they could repair this artery. They made the decision to leave it since it would be a very risky procedure for me and could cause more bleeding. Now was the time to get me on the transplant list for a double lung replacement. This was the only way things could be fixed at this point. It had been discussed with me before but I didn’t expect it to be time so suddenly. At the same time, I knew that my body was slowly breaking down and this was my last option. With little time to prepare, I was listed and they found a donor for me just a few days later. All got the news and all I could do was cry and just accept that this was happening. More family and friends came to see me that day as my surgery was scheduled bright and early the next morning.
March 8, 2018. After dad sleeping in a chair beside me all night it was time to be taken down to await my surgery at 7 a.m. My grandparents came along and we all waited to say goodbye and for them to take me in. With tears in everyone’s eyes and prayers in our thoughts the nurses prepared me and away I went. I can tell you I’ve never been so scared in my entire life. They placed an IV and laid me on the table and that’s the last thing I remember. Two days later I began waking up, learning that they had to go in again after the operation to control some bleeding. I also learned that the amazing surgeon I had also replaced my heart. So after waking up from a double lung AND heart transplant, 7 chest tubes around my stomach and a breathing tube still in my throat, I was quite disoriented and uncomfortable. After another 2 days they felt it was safe to remove the breathing tube and some chest tubes. I was then put on a ventilator to help my new lungs/heart get moisture and oxygen. I could barely speak and it was so hard to breathe. I had nurses helping me stand for the first time and I felt so incredibly weak and wobbly. After starting a bit of physio and sitting up again mostly by myself I slowly gained some strength to my legs. Today is 1 week and 1 day since my transplant and I am walking with a walker all by myself, getting out of bed alone, I have 1 chest tube left and I have a stronger cough again. I have amazed my doctors and nurses and also myself by my progress so far. I smile everyday because I am so so thankful for my donor, my surgeon and transplant team, my nurses, family/friends, and everyone watching over me as I get through this new challenge. I am thankful for getting a second life and another chance I can’t even put it into words. The support and comfort I have received has really been helping me through and without that I truly believe I would not be managing as well. It’s still a long road ahead for me with my recovery, now being on over 17 different meds and physio everyday to help keep my new parts healthy and free of infection or rejection. And Levi Clothier, you win hands down worlds BEST boyfriend award. Your support alone has been unreal. Dealing with me having such a huge health issue and sticking with me through it all, through all the hospital visits and the scares. Loving me and staying strong, helping keep so many things under control while I recover and holding your own life together, you have amazed me and have been beyond incredible. I love you my dear, with all of my new heart and lungs , and this new life will bring wonderful and well deserved things for us. Of course with new challenges, but I have no doubt we can seriously get through anything now.
I feel strong and fresh and despite the pain I am in I am so proud of how far I have come already. Thank you all again.
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