How is it possible that before 2019, I was a very healthy, happy 28 year old woman and less than 6 months later, I am a 28 year old heart transplant recipient?
There have been some huge highs and actually very few lows since being discharged from hospital almost three months ago. Looking back over what I have done and achieved recently is really quite overwhelming. In terms of health, I am walking further every week, started cardiac rehab, had three biopsies with no sign of any rejection from my new heart and not forgotten to take my anti rejection medication at any stage along the way. (Go me!) In other, more fun, matters I have attended a wedding reception, spent a lot of time with friends and family, gone out exploring the local countryside, brought a new puppy, started driving again, been out for dinner, taken a bath, had my nails done…and the list goes on!
I was discharged exactly two weeks after my Heart Transplant. I cried the whole way home. Don’t get me wrong, I was so ready to go home, but leaving the place I’d called home for almost 5 months was hard. The patients, nurses, consultants, cleaners and everyone who I saw on a daily basis became family and once you have been discharged, you are no longer part of that group anymore. You are ‘better’ and you go back to a home where no one will ever really understand what you have just been through like the ‘family’ you have made in hospital. Luckily, I have met friends for life and I will be in touch with the lot of them on a regular basis. Ups and downs, we are now in this together!
This week is ‘Organ Donation Week’ and I am trying to share as many stories as I can through social media in order to spread awareness; this journey has inspired me even more to help other people. I started speaking to women who had been going through similar things to me via Instagram from when I fist got diagnosed with Dilated Cardiomyopathy. We now have a messaging group with ten women aged between 19 and 33. Nine of us have had a heart transplant within the last two years and one girl has an LVAD and is waiting for a new heart in Lithuania. We guide each other through this process and it is such a fantastic resource. I am hoping I will be able to help many others that find themselves in situations similar to mine a long the way. I have come to the decision that I no longer want to work in an office environment, which means I need to work out the next step that works for me. It is very exciting as I can do anything that I want to; I have been given a second chance at life and I will make it count.
I should talk about the restrictions that come along with a heart transplant.
Food: I basically have to eat like a pregnant woman. That means no cured meat, no smoked salmon, no shell fish, no blue cheese (this is the hardest for me), no runny egg, no rare meat. But I get to live so I’m ok with this.
Medication: I am on a GIGANTIC amount of drugs at this stage but it will start to be reduced as time goes on. I will take anti-rejection medication for the rest of my life because my body will always see my new heart as a foreign object. But I get to live so I’m ok with this.
Side Effects: shakey hands, skin tags, dodgy tummy, moon face (steroids), immune suppressed. So far, I feel like my side effects have been really minimal and I can live with these quite happily. I get to live so I’m ok with this.
Illness: Transplant is not a cure unfortunately. If I do not die from other causes, all transplanted organs eventually end in chronic rejection. Aside from this, certain medication that I take cause kidney failure. I am also one hundred fold more likely to get cancer then someone who has not had a transplant. A simple cold or cough can turn into something far more serious for me. This may sound morbid but it isn’t to me – it is just life now. I have to be careful with what I eat, what I do and who I spend time with. But I get to live so I am more than ok with this.
I definitely haven’t processed everything yet. It has all happened so quickly that it almost feels like a dream. I sometimes think I went to sleep on the 31st December 2018 and never woke up. But it probably did happen and this is probably real so I need to make the rest of this life count. I am so grateful for the selflessness of my organ donor and their family. They have given me the best gift I will ever receive and I will do all that I can to honour their life. I urge anyone that can, to sign up to be an organ donor. You can save up to nine peoples’ lives with this selfless decision. What will you do with those organs once you have finished your time on this earth? Why not help someone in the biggest way that you can? Once you have signed up (which takes two minutes by the way), you need to have the conversation with your loved ones. Please let them know that you have made the decision to be a donor.
Goals for the next three months: carry on smiling, spend more time with my loved ones, spread more awareness about organ donation, increase my fitness, start thinking about work and enjoy every moment possible. We only get a short time on this beautiful planet; make the most of it, do what makes your heart sing, be kind, be thoughtful, dance, laugh, BE HAPPY.
By Hannah Sharma, Heart Transplant Survivor