Organ Donor Awareness week 2018: Living life having had a transplant

Rosie FitzGerald
Sep 6, 2018 · 4 min read

As Organ Donor Awareness week continues a pace I thought it would be useful to answer some questions I get asked when people want to know what it’s like to have had a transplant. I’ll add some more tomorrow. Obviously it goes without saying that I can only speak from personal experience, so these answers may not be the same for other people and obviously, obviously I’m not a trained medical person so best talk to one of those types for actual medical information. Warning: this next bit is heavy with analogies.

Why did you need a transplant? I was born with a condition called Cystic Fibrosis (also known as CF) — you can read about that condition here and I’d recommend you take what you read on Google with a pinch of salt. It’s a genetic condition and it makes the body overproduce mucus in the cells. It affects everyone really differently. In my case this over production made me super susceptible to catching chest infections, which damaged and destroyed my lungs, over time.

Now you’ve had a transplant, does that mean your CF is cured? No. Cystic Fibrosis affects every cell in the body. If you think of the body like an old house with broken furniture everywhere, in my case it’s like I’ve decided to put in a brand new bathroom. The bathroom is great and shiny and the old broken furniture from the living room and kitchen will never get into it, but I still have still have to deal the issues that come with having old broken furniture everywhere else.

Can your ‘new’ lungs ever ‘catch’ CF? No that’s not possible. Analogies aside, this is because CF exists in the DNA of cells. The DNA of the cells in my lungs doesn’t have CF. So in the same way you can’t ‘catch’ having blue eye DNA from someone else and you can’t catch CF from someone, transplanted organs can’t catch it either.

Will the ‘new’ lungs ever become yours? No. I take medication twice a day every day that tricks my body into thinking that they are. The job of the immune system is to recognise and respond to (kick out) foreign bodies, be those a splinter of wood, dirt in a grazed knee or a transplanted organ. If you got a splinter in your finger and left it there, your finger would become swollen, sore and infected. An organ is kind of similar but as you can imagine, on a much bigger scale.

So how long will they last then? Forever? It’s hard to say, but they won’t last forever. The stats are ever changing and improving but success depends on a number of complex and sometimes unknown factors. As a guide, about half of lung transplant recipients survive 5 years after surgery, but it should be noted that these stats include a lot of variation (so include older people, people who’ve received them for different conditions, thus it’s hard to relate to such a broad stamp). I am heading into my thirteenth year and learned long ago to take statistics with a pinch of salt.

What makes them fail? Usually infection or rejection. There’s two types of rejection: ‘Acute’ rejection typically occurs within the first year or two after the surgery. This type of rejection is treatable (I had this about three weeks after my surgery, we changed my medication and here we are). There’s also chronic rejection and that’s far less understood and a bit trickier. Personally I don’t know a whole lot about it but from what I do know, there’s no cure although patients can stabilise.

How much medication do you take and are you forever stuck in the house just popping pills all day? For the most part I take tablets twice a day. That breaks down into roughly 8 types of medications and means anywhere from 25–35 tablets a day. Which sounds like a lot. Except it takes me no more than a couple of minutes to wash them down with a drink (and there’s no difference between taking 1 tablet and 10 if you have to stop to take the tablet anyway). There are three reasons I take medication:

  1. To weaken my immune system (for the reason mentioned previously)
  2. To treat CF and
  3. To treat the side effects that come with taking medication for numbers 1 and 2. Yes, I take medication because I take medication.

Can you drink alcohol? Yes.

Can you eat normally? For the most part, yes, but I take precautions because of my crappy immune system — so I don’t eat ‘high risk’ foods like raw eggs or sushi and I try to avoid eating from places that look a bit dodgy (or from burger vans that don’t look that hygienic). There are people out there who take much greater precautions than I do (like avoid eating medium done steak for example). I also cannot eat grapefruit as this interacts with one of the medications I take so I treat grapefruit as though it was an allergy.

Can you smoke? Well that would be stupid.

Can you travel? Yes and I’m glad I can because I love to. I will cover this in a more detailed post soon.

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I will repost another blog from last year in an FAQ style tomorrow but if you have any questions you’re curious about just get in touch (@Or_it_fitz on Twitter).

Transplants save lives. Please talk about Organ Donation with your friends and loved ones, no matter what your wishes. And remember, if you live in the UK you can sign up to the Organ Donor Register here: https://www.organdonation.nhs.uk/register-to-donate/register-your-details/

Rosie FitzGerald

Written by

UX Creative Director at the BBC. Work on TV Platform apps and BBC Three.

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