The Transplant Checklist
CONGRATULATIONS! You have been selected for a once-in-a-lifetime holiday on the stunning Islando de Transplanto!
You may have been waiting for this opportunity for days, weeks, months or even years, and finally the day has come for you to pack your bags and immerse yourself in the holiday that will give you something better than a tan – a new life.
(Beat that Santorini ha!)
In this blog, I provide you with an invaluable checklist to make your journey through transplantation as easy as 1-2-3. I hope this benefits not only patients awaiting their miracle organ on the transplant waiting list, but also patients who are early in their transplant journey.
I wish you all the best on your voyage to Islando de Transplanto, and welcome aboard!
The Transplant Checklist
This is a once-in-a-lifetime voyage. Once you reach the Island, unfortunately, there is no turning back. You will have to adapt to a new community, new food, new language, a whole new world. You will become a new person with a new life.
Here is a checklist of things I would recommend to all patients for their transplant journey.
(Note: this checklist is from my own personal experience receiving a heart transplant)
Bag of Faith
Faith is the heaviest piece of baggage I carry on my transplant journey.
There is a beautiful concept in Islam, called "tawakkul", and it means placing your full trust in Allah's plan. Tawakkul is the reason I was wheeled into the theatre room, on the day of my heart transplant surgery, without even a pinch of fear or worry, because I had confidence, that His plan would be sufficient for me.
Faith was the glue that kept me and my family grounded, steady on our feet and calm in our minds, as the world revolved around us in chaos and uncertainty. I hope that everyone can learn to hold onto their faith on their transplant journey.
Storytime: I remember all the times I vomited in the bathroom toilet during my heart failure episodes, and my mum would come rushing down, only for me to turn around, smile at her, occasionally giggle and say "I have no idea what's going on hehehehe, but alhamdulilah". Faith kept me positive as the chaos unfolded.
Packet of Patience
The journey to Islando de Transplanto will be tough.
You will want to complain
You will feel emotionally and physically drained
You may even get to the point where you will wish you had never left your home.
If you accept early on in the transplant process, that "hey, things may not go to plan, and that's ok", when those little "blips" in your health do eventually come, you will be mentally in a better state to handle them because you had anticipated them.
Storytime: When I had a grand total of 5 infections within the first 4 months post-transplant, I reminded myself each time that, "Patience is bitter, but its fruit is sweet" ~ Aristotle. The fruit, as I know it now, is the strong, beating heart I was gifted by the Grace of God and the kindness of my donor, alhamdulilah.
Jar of Light
At times, your journey to Islando de Transplanto may be a little dark.
Your emotions may drift from high to low
You may experience a lot of guilt
You may find it hard to accept the changes that your body has to go through
You may find it difficult to settle with the new way of living – the medications, the side effects, the slow recovery, the scar.
You are not alone.
Carry a little jar of light to help remind you to always look on the brighter side of life, and to remind you that there is always light at the end of the tunnel. It will all get easier insha’Allah.
Storytime: This little pear lamp (above) was a gift from my brother and sister-in-law. It changes colour when you squish it, its feet dangle over the edge of a table, and it undoubtedly has the power to transform a frown upside down. I had the privilege of witnessing the smiles of the healthcare angels who cared for me at the Freeman Hospital, who were rapt in awe by this little luminous treasure. Their happiness, was my happiness.
Side note: I managed to sell this product to about 5 members of staff - the bedbound businesswoman in me clearly flourished post-transplant. Next stop, Dragon's Den.
Hamper of Health
The one thing I take pride in post-transplant, is a cute, well-organised medication box – the hamper of health.
If you’re feeling creative, snazzy up the designs on the boxes or lids of medicines – for me, magnesium and calcium are clearly very special supplements to get this colourful privilege.
In the early stages of your transplant journey, you will be given an overwhelming number of medications.
Firstly, do not worry - with time and patience, these will slowly slowly decrease overtime.
Secondly, do not compare your medications, doses, or side effects with other patients – I know it can be tempting, especially early on in the process when everything is daunting and new.
Know that each body works differently, and will react differently to the medications. Comparing yourself to others will just invite stress and anxiety to your doorstep. Everyone's journey is different. Appreciate your differences.
Trust the process.
Trust your body.
Trust the healthcare professionals – they know best.
It is important you take all of your medications as advised, but the most crucial of these post-transplant, are the immunosuppressants
How do immunosuppressants work?
Our body has an army of warriors – our trusty immune system. Always ready to fight for our health whenever anything foreign attacks.
When we take immunosuppressants, we are stripping these warriors of their armour, their weapons, and their energy – they are powerless.
This is important for transplant patients, because the newly transplanted organ is “foreign”, and if we did not take immunosuppressants, our body’s army of warriors would begin to attack the new organ.
Downside of immunosuppressants? You have a greater risk for infections, and have to take greater care to prevent getting ill. A normal person can have the flu and be able to fight it off no problem. A transplant patient can have the flu and it can get very serious as their army of warriors isn't able to defend them effectively.
Welcome to the world of transplant.
Box of Chocolates
Following on from the Hamper of Health, some transplant medications aren't the nicest tasting. I would recommend patients to have a little sweet something handy as a reward for your patience and resilience during your journey, and to help keep any unpleasant medicine aftertaste at bay.
Blanket of Hope
Finally, there is nothing that makes a hospital stay more comfortable than a nice warm fluffy blanket. Let this blanket give you hope, grant you comfort in your time in the hospital, and allow you to dream of all the things you want to achieve on this journey, with your newly functioning organ, your gift of life.
Final remarks
My final statement, to all patients early in their transplant journey, is that life is bittersweet.
There will be times when you will experience the fragrance of life, enjoying time with all those around you, and soaking in their happiness.
Meanwhile, other times, you will be presented with the pungent odor of hardship, bringing you down, trying to take the light away from you.
=== Dont give in. === Keep going.=== Your tests are yours - but this doesn't mean you have to go through them alone. On Islando de Transplanto, you'll find a WHOLE COMMUNITY of patients, and families of patients who have stories to share about their different experiences going through transplant. It is these beautiful patient stories I have heard, which inspired me to create this blog.
Follow Freeman Heart and Lung Transplant Association (FHLTA) to become part of a beautiful community sharing their heart and lung transplant stories
Follow Share Your Wishes, to hear how organ donation has touched the lives of thousands.
Thank you for making it through this Transplant Checklist! I hope it will benefit anyone and everyone going through the transplant process. Is there anything you would add to the list? Let me know in the comments below.
I wish you the very best of health!
Comments