Organ Donation Awareness week 2018 — random questions people ask me.
Today is the last day of Organ Donation Week / Organ Donor Awareness. I was away on Friday and asleep or eating enough Dominoes for a small family yesterday so forgot to upload this post.
If you would like to read about other transplant stuff I’ve written about, you can find that here:
This post is one part ‘life pre transplant’ and one part ‘everything else’ in topic. Even though Organ Donation Awareness Week (I can’t work out the official name…) is coming to an end, I always welcome questions and will try to answer as best I can. I wrote a couple of other posts last year which I’ll repost this week. The questions below were asked by friends, family and people from work (I honestly don’t just sit in my room conjuring up interesting questions…).
— -
What would have happened if you hadn’t had a transplant? Put simply, I would have died. I don’t know how long I had left (maybe a year?). In my case, what was happening was I was getting chest infection after chest infection. Unlike a normal person, each infection was scarring my lungs (‘fibrosis’ means the thickening or scarring of tissue, as a result of injury). So while I would get better from each infection, it would leave my lungs slightly worse off than before the infection. The more and more scarring that was building up, the less able my lungs were able to function properly. It reached a point where my body was only going to be able to hold off for a limited amount of time before they were no longer able to support me (I should point out again that no two people with CF are the same so everybody will have a different experience).
When did you find out you needed a transplant? So transplant was already on my radar long before my team told me it was time to start thinking about it as a treatment option.
To explain this I have go wayyyy back and share two standout moments that made things click in my head. The first is when I was just 9 years old. One afternoon, while in hospital, someone showed me a feature in a newspaper about a lady with CF who had given birth to twins. At the bottom of the article, in bold black writing, it mentioned life expectancy for someone with CF. I remember being really, really shocked. It never dawned on me before that this thing that made me sick once in a while might have fatal consequences. The question I had in my head was ‘am I going to die from CF?’ but I was too afraid to ask that. So I began to try logically work it out, how would someone become so sick that they would die from CF? One day, during the same hospital stay, I was on a walk with my physiotherapist. We were chatting away and I thought she’d be the best person to put my theories to. I had no evidence but the only logic I had was that something must make someone with CF sicker and sicker over time. I was quite casual about how I approached it and the question I asked her was this: with each chest infection I got, did it mean a tiny part of my lung died after? (Actually with hindsight, I’ve always been impressed with the accuracy of my conclusion, given I was only a young whipper snapper). Anyway, I thought it was a fairly innocent question to ask, and I was essentially just throwing guesses to the wind; I was very much just curious in a ‘how does the world work?’ kind of way. She stopped walking and she looked at me and suddenly became incredibly awkward. She had a concerned look on her face and told me that she didn’t think she was the right person to answer that question to and I should speak to my parents and my doctor instead. It kind of spooked me. I felt I’d said something I shouldn’t have and her expression told me that was an area of conversation I didn’t really want to know the answers to. So that was that as far as my investigating went.
Fast forward a few years: I was about 13 and I read a story about someone who had had a transplant in a magazine. The year I was 13, I had had two chest infections (up until then it averaged about one a year). I was sitting in the garden and I began to think about all the times I’d had chest infections and it just clicked in my head, that the time in between was getting shorter. I can remember just realising what that must mean. It was like a lightbulb went off in my head. I spoke to my CF nurse and she was honest with me and told me that sure, someday I might need a transplant but I was a very long time off that just yet.
So by the time the topic of transplant was officially raised with me from my team, I was about 16 or 17, I had seen it coming. It felt like the room turned to ice when they said it but my thoughts were very much along the lines of ‘OK, we’re here now, so we have to face this’.
Was transplant the only option? Yes, and I am so lucky it was a treatment option available to me. I was still receiving intravenous antibiotics (i.e., a drip) to cope with chest infections right up until I got my transplant but there were difficulties there too because lots of antibiotics I had become resistant to. There were times when the lab report would show just one or two antibiotics that would have any chance of treating my infection. IVs as a treatment were not able to provide me with any long term well being either. At this point I was on a downhill slope with an unpredictable trajectory. Nobody could say whether I would lose 1%-2% of lung function ability after an infection or whether an infection would turn into a tsunami and simply wipe me out completely.
I met you when we were about 17, before that were you in hospital a lot? I was a fairly healthy child, maybe needing to spend a couple of weeks in hospital every 18 months or so. When I was 9 years old, my mum learned how to administer all my treatment (including IV antibiotics) at home (I can’t write enough about how my mum is both an angel and a saint, doing the job of a nurse around the clock as well as working herself). The goal of doing that was so my school and life would have minimal interruption. While I became gradually more unwell as a teenager I actually missed very little school until my final year (when the infections were becoming much more serious and required hospital monitoring). I think even for my final year of school, it wasn’t until Easter that I suddenly went downhill. I ended up sitting my Leaving Cert (A Levels) in hospital.
Do people you work with know you’ve had a transplant? Well if they didn’t before reading this, they probably have an idea now. Joking (or not?) aside, I know that some do and some don’t. And some I’m not sure if they do or they don’t. Sometimes people I’m pretty sure I’ve never mentioned it to will imply they know — which I’m totally cool with. I have always told managers I’ve had as I feel that’s fair that they’re aware. I don’t actively go around telling people unless I feel it’s important for them to know though (e.g., if I’m managing a team of people) because, quite honestly, it never feels all that relevant to day to day life.
I don’t feel all that comfortable with sympathy, or sympathy when I don’t feel it’s needed. The way I look at it, everyone’s got some sort of something they’ve got to juggle or consider outside of work: be it a health condition, children, an unwell family member, social anxiety, financial worries, legal issues, and this just happens to be mine. I understand that (and why) others may perceive it as a big thing as perhaps it’s an odd one to get your head around (and it does sound rather dramatic), but to me, it’s a way of life I’ve always known.
I’ve seen you talk about having diabetes before, is that related to everything else or are you just incredibly unlucky? When you have CF, you are at a risk of developing diabetes because CF can damage the pancreas (the organ responsible for producing insulin). In my case, I was showing some symptoms of having trouble maintaining normal blood sugar levels from time to time in the year before I had my transplant. About a week after I had my transplant, I suffered an episode of ‘acute’ rejection (my immune system was rejecting the organ). The treatment for that is to absolutely blast the immune system with a course of high dose steroids; the side effects of steroids (never mind extremely high doses) can be particularly harsh. My blood sugar levels shot like a rocket through the ceiling (normal levels are between 4–7; mine were well over 30). While the dose of steroids decreased, my body never managed to regain its ability to produce sufficient amounts of insulin in response to glucose after that. So I was then classed as having diabetes.
Is it common for people with CF to get diabetes? According to statistics released by CF Ireland, in 2015 just over a fifth of people with CF had diabetes.
It is type 1 or type 2 diabetes you have? Neither. I have what’s called CF related diabetes (or CFRD). Given that I take insulin (also known as being insulin dependent) it’s closer related to Type 1 than Type 2. If it comes up in conversation however, I usually just say I’ve got Type 1 for simplicity. I have different nutritional needs and energy requirements than a typical person with Type 1 diabetes though, and CFRD isn’t as ‘clean cut’ as Type 1 (in terms of what my body can and cannot do). Interestingly, it’s the one aspect of my lifestyle and health that over the years people have given me unhelpful advice on; I have been told more times than I can count, that I am a ‘bad diabetic’ for my diet, by people who themselves are neither medical nor diabetic. I enjoy McNuggets and McFlurries — so sue me.
When you got diabetes, did you think ‘ah for [expletive] sake, not this too?!’ While I don’t recommend this as a coping strategy, denial can really help! I didn’t realise when I was struggling with my blood sugars during that period of rejection (above), that this was going to be forever. I had in my head that it would last a few months at most, until everything had all settled down. In the meantime I got on with learning about it and learning how treat it. The only time it ever got me down was about five years later, during a time when I was super stressed, I remember checking my blood sugars and they were super high. I remember bursting into tears as for in that moment it felt like no matter how hard I tried I would never be good enough; I felt even if I got my blood sugars under control, then I still had to worry about my Creon doses (the tablets I take when I eat fat in foods). That was hard. And my perfectionist tendencies didn’t help. It was a low moment for sure. And actually in reality, it was much more about my stress than my ability to manage my diabetes; the high blood sugar was the merely the straw that broke the camel’s back. Moving from injections to wearing a lil pump has transformed my feelings toward diabetes as my control is fantastic now and I have a much greater control over managing it. That said, fast forward a decade and I’m still waiting for it to go away…
Can you be an organ donor? As far as I know, it’s not a straight out ‘no’; that would be decided by medical people at the point of assessment just as it is for anyone else who has signed to be on the organ donor register.
And can you donate blood? No. This is due to having CF. As an aside, even if I could donate blood, it is absolutely impossible for me to give 5mls of blood let alone a full donation because my veins are soooo shockingly bad (in the past -on multiple occasions- I’ve been sent home from appointments and told to come back another day for another try).
You said before that you have to take medication to treat the side-effects of other medication. What kind of side-effects do you mean? I’m pretty sure all the side-effects or potential side-effects I have are from just the three medications I take that weaken my immune system; their job is super important so I can’t just stop taking them. Side effects include (the risk of) heartburn, weakened bones, increased blood pressure as well as -obviously- a weakened immune system. I take an anti-acid tablet, a blood pressure tablet and antibiotics daily to balance all that back out. I also have other side effects like a chubby face (particularly under my chin and under my cheeks). I also deal with periods of bad skin due to one of the tablets I take. Of everything, appearance is clearlyyyyy my number one priority so I do get self conscious about that from time to time (especially the chubby bits). It goes without saying that I’d take side-effects any day over not having a transplant.
Are you allowed to take regular pain relief if you have a headache, for example? I’m not allowed take ibuprofen containing medications but paracetamol is fine, and there’s no special restrictions on dosages of that. Ibuprofen taken with my ‘anti-rejection’ medications can put a lot of pressure on my kidneys (keep in mind my kidneys already get a fair battering as it is with all the stuff I already take). It can also interact with one of my ‘anti-rejection’ medications and increase the risk of bleeding in the stomach. It is an anti-inflammatory and I have a notion that this poses a problem because one of my ‘anti-rejection’ tablets is also an anti-inflammatory. So if I take ibuprofen as well, this can mess stuff up. But that last bit could be slightly inaccurate.
Is it true you can’t be around other people with CF? Why? Yes, contact where possible should be avoided. This is because people who have CF (ore more specifically, CF lungs) can grow bacteria that can be dangerous to other people with CF (or people who’ve had transplants).
Did you once say there was someone you worked with who had CF? How did you know? Yes, I once worked in the same office as someone who had CF. For me, having CF, I am hyper aware to clues about other people that lead me to guessing they might have CF. It’s like being in a secret club, and when you know, you know. I won’t go into the details about how I knew in this instance this other person had CF because I don’t think that’s respectful to that individual or to others who have CF. I will say though that this is something lots of people with CF acknowledge with one another.
Does all this stuff scare or worry you? It doesn’t scare me. I think ‘scare’ is quite a reactive emotion — needles can scare me, but it’s not an emotion I feel generally. I’m sure if I sat down in silence and thought about the enormity of life and the risks that exist everywhere, I might become overwhelmed by life. But I think putting things in perspective and having a positive outlook (even if I have to force myself to focus on positive things) means I don’t find myself in a constant state of worry. Many years ago, my wise mother (who is very, very wise) gave me this advice: “try not to worry about the things you cannot control; focus on things you can. ‘Worry’ won’t change the outcome of a situation but it may exhaust you”. This is a mindset that takes work and practice. It’s why I write things down, that way I’m acknowledging them but also acknowledging that there’s nothing I can do about them.
Do you ever think ‘why me’ or ‘it’s not fair’, and how do you deal with the emotional impact of illness? I’ve honestly never questioned ‘why me’; it just is what it is and if anything, if things like this happen to people, then ‘why not me’?
I’ve always thought about how lucky I have been in life. I have got the best family and fabulous friends who are supportive, fun and always there for me. I’ve been able to travel around the world, I’ve got a job I love, and I’ve had some fantastic opportunities. I also recognise that I am lucky to naturally possess some resilience that has massively helped me deal with some very challenging situations when it comes to my health. My wise, wise mother who I mentioned before once told me about an exercise to do for a week or a month which was to write down three positive things that happened during the day. Before you know it you’ve got a whole list to look back on to help you focus on the positives. I find myself thinking about this all the time. Be it walking to my car after work, I try to pull out three things (tiny or big, doesn’t matter) to reflect on. It also helps me to put things in perspective and it reminds me that we all get one life. And then that’s it. Life is great, but sometimes it can take a bit more effort to see that.
— -
Thank you as always for reading this far and engaging so positively with these posts. To conclude Organ Donor/Donation Awareness week, I thought I would leave you with two statistics:
- On average, 3 people a day die waiting on the transplant list.
- Being an organ donor means you can potentially save up to 9 lives.
Whether you are in favour or not of being an organ donor, please remember to discuss your wishes with your family.
