I never intended to have a set routine of when I would do my blogs, although I realise looking back my first three were written every 2 weeks to the day. Typical me really, I have to be precise, living with Andy has rubbed off on me and I’ve now picked up his OCD habits. But for the avid readers (of which I’m sure there are hundreds) I apologise that I’ve made you wait that little bit longer for this one.
Since going to the Royal Hallamshire at the beginning of August I’ve really been struggling to maintain the positive outlook that has so far guided me through my journey. Mixture of different things but mainly and most worryingly I felt my health really started to deteriorate. To the point where I genuinely thought here we go, it’s the start of the decline. It felt just like it did before I got blue-lighted into hospital when I first got diagnosed. My breathing became really laboured and intense. I struggled to concentrate; even not being able to focus on one of my pastimes…Candy Crush. I have a slight obsession with it (I’m on level 1035 for anyone who is interested – well I was off work for 9 months so what was I meant to spend my time on?) The fatigue just wouldn’t shift and it was like any movement I tried to do whether it was simply opening my eyes or getting up from the couch took an enormous amount of effort.
When you feel like this, apart from the physical side effects, the mental side is just as bad, if not a little bit worse. I really wanted to snap out of it, especially as I felt like a real burden. Andy had to do everything for me and I felt bad for my work colleagues as I felt like I was letting them down by not contributing. I’ve never been one for relying on people and all of a sudden I could see my life flash
before me, being
pushed in a wheelchair full time, being washed and cooked for by Andy. It
wasn’t a pretty image at 31 I can tell you.
I genuinely really started to panic about the future. I’ve never been one to take time off work but I must have been in a bad way as I finally started to listen to the GP who told me to take time off. I wouldn’t say I’m a total stress head (my boss Mike would disagree) but I do find it difficult to switch off. I find my head is always full of so many thoughts that I feel need doing right away. So when I am told to just rest and sleep as much as I can, I find it one of the most challenging things ever.
If I’m totally honest my thoughts were also very much centred about the chat I last had with my consultant about the referral for a lung transplant. I clearly got each of the best parts from my parents, my dad’s same sense of humour and my mum’s list writing and planning for the future. Thankfully the humour part has helped but the list writing and planning for the future is the biggest enemy to someone who is living with a timebomb. My mind ended up going to a dark place.
Everybody's journey on the transplant list is different but as a rough guide: 12 months from now to get on the double lung transplant list, on average they say it’s anywhere between 1-3 years on the waiting list. Then if you are successful enough to receive an organ, actually surviving the operation and then being lucky enough to avoid rejection (where your body rejects the new organ) they only then guarantee the new organ for 5 years after.
Optimistic Gem thinks I might reach 40, negative Gem thinks I might be dead in 3. I told you I had my dad’s dry sense of humour! I can laugh about it now as I’ve had time to process it and I’ve come out the other side with my typical analogy of, I could get hit by a bus tomorrow so what’s the point in worrying about something you have no control over. That is the epicentre of what I believe anyone who has a progressive disease fears the most, not having any control.
Before this diagnosis I never had any thoughts about organ donation, and why would I? It didn’t affect me, and why would it, being young, relatively healthy (I was in the correct BMI category for my height and weight) it’s not something that I ever thought I would need.
I’ve always been a daddy’s girl and normally follow his opinions on life, hence why I’m a Leeds United fan (for my sins) and not Manchester United like the rest of my family. He had very strong opinions about organ donation; in a nutshell he was totally against it. He thought it was messing with science and would say “your time will come when it’s meant to, don’t let people try and interfere with that”. I remember when my sister and I were very young, we had been allowed to sit at the adult table at one of their many dinner parties, as long as we were on our best behaviour, and the topic started about organ donation. A random thought to remember I realise but I remember dad saying that even if Leah or I ever needed an organ he wouldn’t give it to us.
Since it’s come on my radar I’ve been very intrigued to find out what peoples thoughts are regarding organ donation. I’ve found it to be a mixed reaction, some people instantly say yes without hesitation, (rare cases) some say no (more than yes) and then you have the unsure folk (mainly everyone, including my own thoughts prior to PH). The general consensus I’ve heard is the fear that you as the donor are worth more dead than alive or “I would happily donate, but only to someone I know”. If only life could be that straight forward. Granted in the case of a kidney transplant it’s likely that you would have a higher chance of getting that organ from someone you know, but for an organ that you need someone to have died for to be able to receive it, the chances are (in my humble and non-results based opinion), is that it is extremely unlikely.
I appreciate this topic in some peoples’ eyes is controversial and like religion and politics is probably not a topic for the dinner table. But as its national organ donation week I just thought I might highlight a cause that I, you, someone in your family, a neighbour or even your own worst enemy may be affected by at some point in your or their lives, and you will never expect that it may happen.
Now anyone who has ever worked with me or knows me well enough will know I love a good competition or a quiz. So I have a question for you, how many people are on the transplant list in the UK? Go on I dare you to guess.
1,000, 3,000, 5,000.
One of my other traits is I struggle to keep things a secret so I’ll tell you the answer, it’s 6933.
Another guess for you how many people have had a transplant since April this year?
100, 1,000, 10,000.
Real answer is 1482.
Final fact for you: 3 people a day die who are on the transplant list. These figures aren’t there to scare you or make you feel sorry for me or anyone who is on the list. I only thought I would share the facts and figures as I didn’t know these figures beforehand and the results really surprised me.
It’s interesting to know if we lived in France or I think any other European country, the rate of transplants carried out is a lot higher and the timescales of actually receiving the organs are a lot lower than in the UK. Why you may ask? Well in the UK we have to opt in to be on the organ donor register, whereas in France and other countries you have to opt yourself out if you don’t want to be on it. Although from my research, I have found that Wales are going to trial it the continental way and depending on how successful that proves, England hopefully may follow suit.
I could harp on about the research I have found out but I don’t want to bore you all and I’m conscious I need to get the tea on soon. So this is the best website I have found to answer any of your questions you may have about how you can register and how donation actually works https://www.organdonation.nhs.uk/about-donation/
One final point is if you do decide you would like to donate your organs when you no longer need them, something that is as important as registering is to tell your loved ones. Should you ever be in a situation where your loved ones need to make the decision, it would be so much easier for them if they know your wishes, especially at what would be a very difficult time.
Had it not been for being diagnosed with PH I would probably never have even thought to register myself on the organ donor register. But as maybe one day I might need to be on it, I would be totally hypercritical if I were to just to take someone else’s organs and not donate mine. I was surprised to find out that even though my heart and lungs are in a bad way, I can still donate my other organs. From tissue to skin through to liver, heart valves and bone and you have the complete choice of what parts you want to donate. So if you didn’t want to donate your eyes but were happy to donate a kidney for example you can do that. Since being diagnosed all of my family even my dad would you believe, has signed up to become a donor. So if my stubborn dad can change his mind, anyone can!
I’ll leave you with this final thought:
If you needed an organ transplant would you have one? If so please help those in need of a transplant by opting to donate organs and tissue.
As always thanks for reading.