Forever In My Heart

As Movember comes to an end, something made me think of this picture:

Caleigh (left) Dominique (right)

I don't know if you have noticed but my life has been going pretty great since my transplant. Of course I have days where I feel like I don't know what I'm doing or where I should be in life but I'd take any of those over one of my pre transplant days.

Since I started my blog, I have met so many people whom I now can call my friends. I've experienced so much with my new lungs and continue to experience new things all the time. All in all, I've been incredibly lucky in life and this year has really been the best year of my life.... so far! 

However, my mind is constantly filled with thoughts of life before all of this was possible. Flashbacks of feeling suffocated due to my failing lungs. Days when my coughing fits were so bad, I could see the fear in my mom's eyes that maybe that would be my last cough. All of this haunts me and whilst I am very grateful for everything in my life, I will always be most grateful for my new lungs and health.

I don't have dreams of designer clothes, the latest cell phone, exotic holidays or fancy cars. I lust for the important things in life, good health and that all my loved ones are safe and happy.

One of the thoughts/people that always pop into my head is my late friend, Dominique. Dom and I met in hospital many years ago, I can still remember a nurse saying to me "when you're up for it, the twins want to come and meet you". The next thing I know, Caleigh (Dom's twin sister) and Dom came knocking on my hospital door. Dom was in a wheelchair so I assumed she was quite ill and asked how long she had been wheelchair bound for. She got up off the wheelchair and said "Na I just found ths in the hall way and decided to have some fun". I knew righ then that these girls and I would become very good friends! And we did. 

However, Dom was very ill and she was in hospital to see if she was a transplant candidate. Like me, Dom really struggled with her weight and she needed to put on quite a bit of weight before they could list her for a transplant. This was one of the factors which lead us to bond so closely. Gaining weight was one of the hardest things I had to do before transplant and NOONE, including my doctors and family will ever understand just how very hard that process was. I had friends and family telling me I wasn't trying hard enough or suggesting I had psychological issues with eating. These comments always upset me so deeply because I knew I was trying and I just wasn't getting anywhere. Dom understood and whenever we spoke about it she would always comfort me and assure me that they just didn't understand and I must just keep going. 

I did the same for Dom and always tried to motivate her to keep her head up and spirits high. When Dom started to really struggle I was so worried about her and could see her withering away in front of me. Doctors had advised we should both have a procedure done to insert a tube into our stomachs and start tube feeding with that to try and gain weight. We were both very hesitant and decided against the operation. Then, when I saw how much Dom was struggling, I knew that if she didn' have the stomach tube inserted she wouldn't be around much longer. I also knew how stubborn she was and that there was no ways she would agree to have it done... unless perhaps I did. I thought that if I had the op I could convince her to do it too and so I went ahead and did it.

My assumptions proved correct and a few weeks later Dom decided to have it done too. By this stage she was extremely ill and I could feel her giving up. She was so very brave and never gave up but her suffering was unimaginable and it absolutely broke my heart to see her like that! 

I left hospital and gave Dom a huge hug good bye and wished her all the best for the op. It was so hard to leave her in hospital, as was the case whenever I was discharged while she was there. 

Dom went in for her op and all seemed to go ok. Her sister Caleigh even sent me a picture of her recovering in ICU with a giant duck teddy. I was so relieved and couldn't wait to speak to her about how we were going to get fat together. My excitement was abruptly ended when I recieved a message to say that Dom's lungs were struggling and she had to be put onto a ventilator. My heart sunk and I wanted to go to the hospital to be there for her and Caleigh but I was so sick myself that making the trip to the hospital would've been so difficult for me. I waited anxiously at home, scared to read any messages I recieved but also hoping for one to say that everything was ok. That message never came and the next morning I was informed that Dom had passed away.

Words cannot explain how deeply upset I was. Dom was the closest person I had ever lost and my heart was inconsolable. Not only was I deeply hurting for the loss of my friend and the huge support that she gave me, I was also hurting for her family, especially her twin sister, Caleigh.

Losing any sibling would be devastating but there is something about twins that just makes their connection that much stronger. When I first met the twins they even said to me that they weren't themselves without each other and Caleigh would often admit herself into hospital just so that she could be with Dom. It was truly awful watching Caleigh trying to get on with life without her other half and I tried my best to be there for her, as my friend and on behalf of Dom.

When I finally reached my goal weight a few months later, all I wanted to do was share the achievement with Dom. It was such a bitter sweet moment and to this day whenever I get on the scale I think of Dom and hope that she is smiling down on me for coming so far. 

I just wish she could've come on this journey with me.

Caleigh and Dom

I often read Dom's timeline on twitter which of course it always makes me cry but it also reminds me of all the good times we had together and all the lessons I learnt from her.

Dom died because a donor wasn't found in time. This tragedy is something that perhaps could have been avoided if there were more donors available. Here's a few screenshots of Dom's tweets which I hope will show those of you who haven't signed up just how desperate people on the waiting list are. Dom and I would get so excited when we heard of people signing up - just putting your name down gave us hope and strength to keep going. 

 One of her tweets that really resignated with me when I was also very close to death was this one -

I have such a happy, friendly spirit but when I was ill and pretty much living in hospital it started to take a toll on me. I chatted to my friends less and less because I hated having nothing but bad news to tell them. When they asked 'how are you feeling', I wanted to cry and say 'horrible' but I felt like that every day and didn't want to be negative. Instead I would respond with 'I'm ok' or 'a little bit better'. This wasn't the truth but I was also too emotionally exhausted to explain what was really going on.

I hated the person I was becoming and I'm so happy that I can now be who I really am.

I wish with all my heart that I coud look back with Dom now but the sad reality is that life doesn't always have a happy ending. 

This was Dom's last tweet, she passed away a few days later after her op. Her bravery and strength is so prominent in her words. I can not explain how sick she was, with her weight at an all time low, she looked skeletal and barely had enough strength to hold her phone. Still, she somehow kept positive.

To read more of Dom's tweets you can find her on twitter at @truedominique.

Dom and I's story is very similar to the movie 'The Bucket List' and it always reminds me of how lucky I was to cross paths with such a phenomenal person.

Aviva - Our lovely physiotherapist and Craig

Dom's brother, Craig is currently awaiting a double lung transplant just like his sister. Please sign up as an organ donor and make sure he doesn't have to wait as long as Dom did for lungs!