Sunday, 13 September 2015

National Transplant Week 2015

Huge thank you to CF/Aware who asked for my story for this years National Transplant Week. This is my story, remembering that very scary yet mind blowingly amazing episode of my life 2 and a half years ago!

I hope you all have signed up to the Organ Donor register, it's so quick yet can and will make such a huge difference to not only 8 people's lives, but their friends and families too. Fucking do it.

Here is CF/Aware's post, with a link to the page here

(Give them a follow, they do a bloody fantastic job. Facts, articles, stories, everything you need to be cystic fibrosis aware.
Twitter: @cfaware  Facebook page here )

Organ donation week this week has been tremendously successful at highlighting the life changing experiences people have had thanks to organ donors. A lot has been said about people with Cystic Fibrosis needing lung transplants, however CF doesn't just affect the lungs and people may need other organ transplants.
This is Laura's story...
"First some stats for you: CF liver disease can affect up to 40% of children with CF, with that rate dropping as age increases - it's unlikely you develop CF liver disease as an adult. Of the people with liver disease, 8% will get scarring, or cirrhosis. Of this, 3% will need a transplant.
CF liver disease is caused by thick bile (just like thick mucus in the lungs) that eventually block the bile ducts and cause the liver to harden and scar, again just like what happens in the lungs. A scarred liver doesn't work anymore, and when this happens a transplant is the only way to survive. Cystic fibrosis liver disease is the third most frequent cause of death in CF after respiratory and transplantation complications and accounts for 2.3% of all mortality."
“I was the very lucky recipient of a new liver, pancreas and small bowel (called a multivisceral transplant) on the 23rd January 2013, when I was 23. I was put on the waiting list 9 months earlier, after a series of long and extensive testing that revealed what we all dreaded – because of CF liver disease my liver was failing and now end stage. A series of frightening bleeds from my oesophagus a few years earlier first hinted that something was wrong, an indication that the pressure within my portal system was getting increasingly high; blood wasn’t going through my liver because it was becoming so scarred, so instead was being re-directed into my (growing) spleen, and bursting out into my stomach, oesophagus and intestines, which causes life threatening bleeds, the highest cause of death in CF liver disease.
I also had CF related diabetes, and controlling it was impossible because the liver was negatively affecting my pancreas. I frequently would go unconscious because of low blood sugars I couldn’t predict – one time this happened a week before my final exams at uni, also getting serious concussion from the fall. I would frequently be rushed to hospital to try and revive me before my brain shut down.

I was initially seen under Kings College Hospital, but they refused to transplant me as they thought the operation would be too risky; “It’s basically playing Russian Roulette with you” the consultant said, ever so nonchalant. A 1 in 5 chance of dying on the table. A scary statistic, but to me better than a 5 in 5 chance of dying, drowning in my own blood, within 2 years. Thankfully, the doctors at Addenbrookes in Cambridge came to my rescue and ultimately saved my life as they decided the only thing to do was transplant my liver, and my pancreas too as there was no guarantee my pancreas would return to normal with a new liver. To make this operation easier, they decided to replace my entire middle, like a flip book (see picture).

9 months later I was called to Addenbrookes Hospital for my transplant as organs of the right blood type and size had become available, and a family at a time of great sadness had done an incredible thing and let their daughter donate her organs. After 2 operations (the main transplant lasting 12 hours), rejection, dialysis, plasmapheresis, clots, drugs with nightmarish side effects, a lot of tears, pain and trying to recover with lungs that had plummeted down to 15% of their capacity, after 4 months in hospital my body was finally (and slowly) getting used to my amazing new additions.
It was an extremely rough ride, and not being able to breathe properly throughout was terrifying. I was in in and out of hospital for the rest of the year, as my lungs just couldn’t deal with what an onslaught they had been subjected to. From 80% capacity before the transplant they had dropped to 15% - I was on oxygen for 4 months, and didn’t have enough puff to even blow my nose. One lung had collapsed and had hardened to a cement-like consistency, which I am still now in the process of fixing.
Organ donation has not just saved my life, but also vastly improved the quality of my life. I am now able to gain weight to stay healthy, can process medication effectively, am not dead, don’t look like I’m 8 months pregnant, and a massive silver lining is that my lungs are steadily improving too. They are now at 90% capacity, the best they’ve ever been.
The amazing thing is that my donor also saved another 2 lives that day – her heart and lungs were also transplanted, and her kidneys too. To me she’ll always be my hero, as I couldn’t have this amazing and fulfilling life I’m living now if it wasn’t for her and her selfless act of signing up to the organ donor register. It’s crazy how such a small action can save up to eight lives. I definitely think that’s 2 minutes well spent. What’re you waiting for, just bloody google it and do it!”
Huge thanks to Laura for allowing us to share her amazing transplant story for ‪#‎NationalTransplantWeek2015‬, you can find her blog at

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