“I was completely healthy and unaware of what it was like to live with any sort of illness. I was the annoying person who had never been prescribed antibiotics, never went to to the doctor, and never needed any days off from work. I wasn’t sick. Ever. Sitting here now, I can feel my heart beating in my chest, pumping the blood around my body, keeping me alive.
Except it wasn’t always my heart. It is her heart that keeps me alive.
At the age of 28, everything changed. My entire life turned on its axis. I had lived an incredible life so far and I was happy. I went to school and university, backpacked around the world, moved to London and worked hard, and had great friends and family. I was social, active and healthy, until I wasn’t. At the end of 2018, I started to get a chest infection. I carried on with the Christmas festivities but it wasn’t getting any better so I took myself to the doctor. They gave me antibiotics and sent me on my way. I carried on as normal.
As the New Year came, the illness intensified. I was suffering from vomiting, headaches, shortness of breath, and I was seriously lacking in energy. The doctors kept sending me away with more antibiotics. It was so frustrating I even took my mom in with me to try and get them to check for anything else. I had never felt so unwell and every time I tried to lie down to sleep, I would have a coughing fit. As time went on, I decided to stay with my mom for a while because I just couldn’t cope by myself anymore. I couldn’t even walk up the small driveway without stopping to catch my breath. Eventually, my breathing became so labored, so shallow, it was clear I needed more help. On that Saturday night at the end of January, we went to my local hospital.
As soon as they took my blood pressure and checked my heart rate, they immediately requested more tests. I was quickly ushered into a side room and a nurse put a cannula in my arm. Blood tests, an ECG and a CT scan came next. It was late and there was a lot going on around us. It is all quite a blur now, but my mom was sent home around 3 a.m. and they took me to the ward as a precaution. The machines were beeping and patients were crying out in their sleep behind closed curtains. I opened my eyes around 5 a.m. to see a doctor at the side of my bed:
‘Miss Sharma, have you ever seen a doctor about your heart?’
‘Have you ever had a heart attack before?’
‘We think you may have had one…’
What was happening? I could not understand how I got to this point. I was confused and exhausted. In truth, I was terrified and I wanted my mom. They took me up to the Coronary Care Unit and after a few more tests and readings, they reassured me I was not having a heart attack right at that moment and they didn’t think I had had one. During the doctor’s rounds in the morning, I was informed I was actually in heart failure. My heart was failing. Failing my body and failing me. They were hopeful, with a certain medication, I would be able to go back to work after a few weeks of rest and lead a ‘relatively normal’ life. I can’t really tell you what I felt at that point. I was numb.
A ‘relatively normal’ life wasn’t for me though and the universe had other plans. The drugs did not work and I crashed immediately. I couldn’t even get out of bed! That was it – the hospital decided I needed more care than what they were able to give me and they sent me to a specialist heart and lung hospital a couple of hours away in London. This was getting serious now and I could see the worry etched on everyone’s faces around me. The nurses had been absolutely amazing and I could tell they were all rooting for me. It was scary, but I was strong and determined. I had a lot more life to fight for.
My new hospital became home for four and a half months. It was a big, old fashioned building filled with some of the best doctors, surgeons, and nurses I could have asked for. I was put on an IV isotope drug, which made me feel so much better as it helped my heart pump the blood around my body. Nausea subsided and I got my appetite back. I made my room feel like home with photos, cards, and messages. I got to know some incredible people in the same situation as me. I had visitors most days, which kept me going throughout all of this. In my mind, I still thought after a few tests, I would be able to go home soon and get back to normal: I was both naïve and in denial.
I had test after test — echo, ECG, PET scan, CT scan, MRI scan, heart biopsy, right heart catheterization, x-ray, blood test, urine test, and probably many more. I lost over 20 pounds while the fluid was drained from around my organs. There were things to do every day and my team was about to leave no stone unturned.
One of the lowest points whilst being in the hospital was contracting sepsis and MRSA from an infection in the central line (a catheter placed into a vein in my neck to give medication and take blood). I woke up one morning with a high temperature, feeling very nauseous. I threw up instantly after an IV bag of antibiotics and then fainted whilst having a chest x-ray. It was decided I needed to spend some time in the Intensive Care Unit.
The first night, I suffered from septic shock all night. Hot. Cold. Freezing. Hot. FREEZING. HOT. Boiling. Cold. I cried a lot that night. What else could go wrong? How could I cope with anything else? I was drained and I was tired of feeling like this. This kind of stuff didn’t happen to ME. Luckily, I was pumped full of antibiotics and after five days, they could move me back to the ward. I had shrugged off the negativity again and continued the fight.
After a small (two week) stint at home, I was readmitted again. The team wanted to see if I could tolerate oral medication for as long as possible, to extend my life. They took all the precautions necessary, even fitting me with a subcutaneous defibrillator (ICD) before I went home. I was so excited to be discharged but I was very weak and vomiting a lot from a reaction to the pain medication I was given for the ICD procedure.
The first week back in my own bedroom, I couldn’t get out of bed. I felt so sick again. I remember crying to my mum, ‘I can’t be sick forever. I can’t live like this.’ After a week, I had to go back to the hospital for a check-up and as soon as my consultant saw me, she knew things weren’t right. My liver was going downhill, my blood work was not where it should be, and they were worried. I tried to persuade them it was just a reaction to my last procedure. I had even worn makeup to make myself look better and less grey. But we all knew what this was leading up to.
I had another appointment a week later for a right heart catheterization – a procedure where a special catheter (a small, hollow tube) is guided to the right side of your heart. The tube is passed into your pulmonary artery. Blood flow through your heart is observed and the pressures inside your heart and lungs are measured. The results weren’t good and as expected, I was readmitted right then and there. A few days later, after a long meeting, a team of doctors came into my room:
‘We have decided the best course of action is to list you as soon as possible on the urgent transplant list.’
Rewind to four months previous and I was living my usual, healthy, happy life with no real worries to speak of. Skip back to my hospital room: URGENT TRANSPLANT LIST. To be honest, we knew it was coming by then. My brother was with me when we got the news and we were calm and collected. It was the only option I had if I want to live and I still wasn’t ready to give up on it. My brother and I have faced a lot of things together and at this point, we knew we had another hurdle to jump. My friend came up and joined us that day and we spent the day like kids eating fizzy sweets and laughing at silly things. It was actually a lovely day. I imagine I cried my eyes out when they left, but I only remember the fun I had with two of my favorite people in the world.
I waited 6 weeks in total once I had been put on the list. I had had two failed ‘calls,’ where the heart had not been viable for me in the end. The Transplant Coordinator would come in and say there was a possible heart for me and I needed to nil by mouth in case it could go ahead in a few hours. They would come in with updates throughout the day. I would make a decision whether to tell my family now or when I knew it was closer to being definite. My family would make a decision whether they would make the two-hour journey up to the hospital straight away or wait until it was closer to being definite. And then the coordinator would come in and say, ‘I’m sorry Hannah, it won’t be going ahead today.’ It is so hard to try and explain the different emotions I went through on those days. I had been told I would probably have at least one call that didn’t go ahead but I still clung on to hope. I was also nervous and thought maybe I wasn’t ready for it, which made me feel guilty and sad for the person who had just died. I was happy there may be light at the end of the tunnel but I tried not to get my hopes too high. When it didn’t go ahead, there were tears and then exhaustion. There were calls to make and then food to eat and then long sleeps to be had.
But then there was always the next day… the day the coordinator came in to tell me there may be a heart for me — her heart.
I had already been tipped off by my consultant a little while before. I had another infection and I was getting really poorly again. The whole week was a blur and on this particular day, I remember people coming in and out, taking out my lines, checking my blood pressure, and taking blood tests. At one point, I called my mum, my brother, and my friend to let them know what was happening. A bit later, it looked like there was a high chance of this going ahead and the coordinator asked me to shower and put the hospital gown on so I would be ready. My support squad decided it was time for them to drive over and they were with me by about 1 a.m. We all napped on and off – me on my bed, two on the chairs and one on the floor. The anesthesiologist and one of the surgeons came to see me at one point and the nurses on call kept checking in on us. I’ll never forget listening to Stevie Wonder’s ‘Superstition’ and ‘Proud Mary’ by Tina Turner as the sun rose in my hospital room the morning I got my new heart — her heart. I wasn’t scared. I was ready.
The hardest part was saying goodbye to my family when we got down to the theatre but we were still laughing and joking the whole time. We had realized I had nail polish on my toes so my mum and a nurse had a foot each and were scrubbing away as I was being wheeled down! We hugged and kissed and I was wheeled into a small room where I was very quickly put to sleep.
According to my surgeons, it could not have gone better. I spent two weeks resting, healing, and crying a lot. I had to learn to walk again with the physio team and I had to wrap my head around the copious amount of medication I would be taking every day before I could go home. The medication is slowly being reduced but I will always take certain meds in order to stay alive. The anti-rejection medication I take suppresses my immune system so it can’t fight against the foreign object, the heart, in my body. This, of course, has its own complications but I am in the constant care of my transplant team and will be monitored for as long as my shiny new heart keeps pumping.
Just two weeks after surgery, I was being discharged to go home. GO HOME. Coming home was incredibly emotional. It was hard to leave the safety net and the family I had made at the hospital but it was beautiful to see everyone at home. I’ll never take it for granted again.
I am now ten months post-transplant and still a little in shock at everything that has happened. Now that we have a pandemic on our hands, it is hard to understand the world we live in sometimes. I just know I am happy to be on this Earth now, more than ever. I get to see my siblings and my nieces grow every day. I got to meet my nephew, who was born this year. I get to spend time with the people I love most in this world and create more beautiful memories everyday. I get to be an advocate for organ donation and I get to tell people my story and inspire them to register to be an organ donor. And furthermore, once they have signed up, I get to encourage them to have a conversation with their loved ones about their decision.
It is so incredible to me I am alive because one selfless, beautiful woman donated her organs and her family was able to respect her wishes. The heart pumping inside of me right now was not mine to begin with but she gave me the best gift I could have ever wished for when she gave me more time to LIVE.
It is her heart that keeps me alive.”
This story was submitted to Love What Matters by Hannah Sharma from East Sussex, UK. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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