4th Lungaversary

This Sunday (5th March) marks 4 whole years since I received my 2 beautiful lungs! 

Before my transplant life was very different. I have Cystic Fibrosis which is a genetic disease that I was born with (and still have). The disease affects various organs but my pancreas and lungs are the most affected. I spent my entire life fighting lung infection after infection which meant that I was pretty much always sick. From the age of 13 I was admitted into hospital every 3 months for 2 weeks of antibiotics. Doing the maths, that amounts to over 2 years of my life spent in hospital. These were my planned admissions so that number doesn't take into consideration the amount of days I spent in hospital fighting unplanned infections. These became more and more regular and the year before my transplant I spent more time in hospital than I did out. I also spent 3 months in hospital recovering from my transplant. So it's safe to say that I've spent around 4 years of my life in a hospital bed. 

Can you spot me?

Hospital wasn't fun but it was the easy part. When I was out of hospital I still had to do physio once or twice a day (30 mins of breathing exercises and coughing up infected phlegm), nebulising twice a day (about 30 mins per session), injecting with inuslin and of course all my other medications. Later I also had a feeding tube inserted which meant that I had to clean and dress the 'wound' daily, set up my feeds at night and clean everything each day. When I became dependent on oxygen, life got even harder.

Looking after myself and staying alive was a full time job. It was physically and mentally challenging every day and if it wasn't for my amazing support system I would have easily given up a long time ago. Apart from the admin, the last year or so before my transplant I was also in a lot of pain, threw up regularly, chronically tired yet unable to sleep because I was coughing all the time. I was dying and I could feel every part of my body struggling to work. 

But my efforts paid off and on the 5th of March 2013 I went in for my double lung transplant.

What I want to say to those that are waiting for a life saving organ is this:

The road is long and difficult and giving up seems easier than hanging on, but when your time comes and you receive the gift of life, every day you sent in pain becomes worth it.

Life IS worth fighting for!

Every transplant is different and while some sail through the recovery, I did not. I knew that it would be difficult but I thought it would at least be better than what I was having to deal with - I was wrong. You don't wake up and breathe easy, you don't feel stronger and you certainly don't feel any better. 

It's a whole new battle! 

You go from one set of problems to another and you have to fight even harder than before to get to where you need to be. It seems so unfair that after a lifetime of fighting things don't come easy after the surgery, but that's life I guess. 

New lungs

Luckily I had my support system by my side the whole way, telling me not to give up and reminding me how far I had come. Although 3 months of fighting seems so little compared to the 25 years of fighting I had before that, it was the toughest 3 months of my life! 

What I want to say to those that have just received a life saving organ is this:

Don't be discouraged by the fact that you aren't immediately feeling better. Good things take time so be patient with yourself, take it day by day and don't give up!

You are closer than you realize and the reward is far greater than you can ever imagine! 

Life since my transplant has been incredible! It took me a bit of time to find my feet and adjust to being 'healthy'. I spent nearly 2 years confined to my flat or a hospital bed on oxygen so just going to the shops was a big deal for me. I had no confidence, I had very few friends in Joburg and I had no idea what I was going to do with my new life. It was a scary and confusing time but like all the other fights I have faced in my life, I knew I had to keep pushing and eventually I would get there. 

And get there I did! I have made so many special friends, I have pushed myself to try new things and I have worked hard to develop a career in digital marketing (working for myself). 

I am incredibly grateful for the 'borrowed time' I have with my friends and family. I don't know how much longer I would have lived if I hadn't received my transplant in March but I knew that I was too weak to see my next birthday in June. Instead, I had my transplant and was discharged a few days before my 26th birthday. This year, 4 years later, I will be turning THIRTY in June, an age not many thought I would see (Including myself at times). I treasure the time I have with loved ones and I have made it a priority to never take advantage of this time. Health and family first - career and everything else second!

I've enjoyed so many 'firsts' with my lungs. My first swim, where I could actually hold my breath longer than a few seconds, my first event where I didn't have to try explain why I was having a coughing fit and my first time on a beach where I could actually walk in the sand without feeling like my chest was going to explode.

I also met and moved in with the love of my life! Before my transplant, I had to focus on myself and I didn't have the luxury of being in serious relationship or planning a future. Now I can! We live in a beautiful little flat with a cat that we adopted (Count Dooku) and a Boston Terrier (Princess Leia) that Travis had gotten a while before. I'm surrounded by love! 

Having my portocath removed a year after my transplant

Lung function

X-rays

Life isn't smoothe sailing though. Transplant is not a cure for Cystic Fibrosis so I still have digestive and diabetic issues that I deal with daily. Your body never accepts a foreign organ and so I have to take medication to reduce my immune system so that it doesn't try and kill my lungs. These meds have a lot of side affects so I am constantly on the look out for them so that we can deal with them as soon as possible. I go for a check up every 3 months, far less than my monthly check ups pre transplant! Check-ups always cause a bit of anxiety as I never know when or if my body will start rejecting my lungs. If this happens there are a few treatments that can be used to slow down the rejection process but ultimately I would need another transplant - something I'm not keen on doing again for a while! 

Tascha, Cathy, Me, Mom, Aviva

I'm so grateful to my donor (who I know nothing about) and to all of the medical miracle workers that have allowed me to live a 'normal' life. 

Thank-you to my heroes at Milpark:

Physios - Aviva (For being my mom when my real one couldn't be there)

                Tish (For making me laugh when I was having a horrible day)

                Richard (For encouraging me on my darkest days)

Psychologist - Tascha (For being so patient with me when I was psychotic) 

Doctors - Dr Williams (For giving me years of great care and showing compassion when I needed it)

                Dr Cathy (For keeping me going until transplant and for all the support and love always)

Nurse - Sr Lindi (For being so understanding of my needle phobia and always encouraging me)

Surgeon - Dr Sussman (For being a rockstar surgeon and getting me through my transplant)

- These are only a handful of medical professionals that helped me on my journey. There are countless other nurses, xray technicians, dietitians, lab staff and hospital porters that made my life a little easier when I needed it most. 

Alice, Shaun, Me, Charlene - all double lung recipients

On behalf of all transplant recipients I want to say thank-you to everyone that has made the decision to one day be an organ donor (Make sure you tell your family HERE) 

Without donors I and so many others would not be here!

Happy 4th lungaversary to my beautiful lungs!