Thank you

Today marks 5 years post double lung transplant. Simultaneously,  it seems both so long ago, and just like yesterday. I can remember so clearly waking up to the call that day and the events up until surgery. 

I cannot begin to encapsulate the last 5 years into this one post; it's not always been easy (it still isn't), there have been huge triumphs and horrible lows. 

However, the overwhelming emotion today is gratitude. But who exactly am I thanking? Well, my parents who were with me every step of the way, meaning I was never alone. My medical teams who kept me going from birth to now but particularly the amazing staff at Harefield whose expertise and genuine kindness got me through. To my co-ordinations who delivered the life changing news and supported me through it all. To my incredible donor family who are the bravest, selfless, inspiring people, the people who through all their grief and torture gave me a chance to live again. And finally to my donor, you literally saved my life and I will do everything I can to make you proud and use your gift well.

To all of you I want to say...

Thank you for the 5 extra birthdays and Christmasses with my family. All the other family weddings, births, celebrations and casual days. For hugs with my mum, getting my dog who I absolutely adore, the 'I love you's' , the nights snuggled in bed, and every moment in between.

Thank you for allowing me to walk out of my front door. Just walk out, without oxygen, a wheelchair, and extreme breathlessness. To walk for a bus, get on a train independently again.

Thank you for all the days I've turned my face to the sunshine felt it warm my face and been glad to be alive.

Thank you for all the friends I would never have known were it not for my transplant. Being able to meet my niece, and my cousins children. The friendships and extra days that would never have happened if it weren't for all of you.

Thank you for the ability to take a deep breath and know how lucky I am.

Thank you for allowing me to see my potential, completing a half marathon and graduating, and to feel I can continue to strive for more.

Thank you for allowing me to start travelling and conquering my fears surrounding it. To Paris, Disneyland, Florida, NewYork....

Thank you for the hundred little things I do each day that barely register sometimes but that I could never have done without you.

Thank you for letting me follow my dreams, like my work experience at Les Miserables, my drama course, and the chances to perform which have made my heart soar with happiness.

Thank you for saving my parents the grief and trauma that would have been losing their youngest daughter.

Thank you for my future and for every single second that has led to this moment. 

Thank you for my life.



Like I said on my last blog post, I was going to include these thought there but I think they need a space of their own.
My clinic appointment went really well last week. My lungs are doing really well, no infection or rejection. My lung function is up, diabetes is pretty stable, everything was good, and I am so incredibly grateful for that I truly am. However I think it's important to give you an honest picture of life after transplant as I always said I would, and there are still a couple of issues. 
For a long time now I have spoken about my pain and fatigue which are part of my daily life and fairly restrictive at times. My doctors and I have done test after test to try to get to the bottom of the fatigue. I've had extra high doses of steroids which have been absolutely horrendous in terms of how they've made me feel emotionally and physically. They have helped and over time I've weaned down to a dose which we would still like to get lower but at the same time, it's pointless if I'm losing all benefits to my energy which is kind of where I am now. Pain wise I've seen pain specialists, physio's, and rheumatologist's. I've tried some very strong drugs, heat pads, TENS, massages, exercise all with little to no success. 
It may sound ridiculous but weaning on to each medication, being battered by side effects, pushing through that to find no impact on pain at all, weaning off of the drug and then phoning/visiting hospital and starting the process again with another drug is soul destroying. Not only are you physically and mentally going through some very nasty effects, but each time you get your hopes up that this might work, only to find it doesn't. Another aspect is the institutionalisation. I've been ill all my life but it's very difficult to get out of that mindset post transplant when you still need to maintain daily meds but no where near as sick as you were. However when trying new drugs, feeling sick or rushing to the loo, dizzy or sleepy, you start reverting back to that. Cancelling plans, spending lots of time calling or visiting hospitals or having tests. It's easy to get sucked into the bubble again. I felt like this and didn't realise it straight away. I was really down, in pain, mentally and physically exhausted. 
It was only a few weeks ago that I realised how I was feeling and why, then I was able to take that mental step back; away from the confusion and emotion at the heart of everything, and look at the situation from a distance. 
 I saw my Pyschologist at my clinic. I didn't have anything specific to discuss but I think I just wanted to run through things out loud with him. I explained about the situation I'd got to and how I'd stepped away from it. Only then did I realise I needed to take control back of my life. I wanted to try and make things the best they could be, but sometimes you have to realise that can't happen. We all knew that I was pretty much at the end of things to try for pain and fatigue. There are no easy answers or a never ending stream of drugs or treatments to try. I could carry on with the side effects and constant hospital involvement but my quality of life will suffer. Do I really want to waste more precious time? Or do I to the best of my ability, go out and live with these problems, working round them and modifying to accommodate them? After all this time, rather than a drive to be perfect, I feel an acceptance. I will never be exactly as I want to be. My body has endured a lot and it suffers with fatigue and pain. Some days I have to give into them and change plans or stay in bed, but other times I can work with it rather than miss out or spend copius amounts of time at the hospital.

This is a huge deal for me as both my consultant and psych agreed separately. 

That's not to say acceptance is an easy thing. Knowing this is how it is doesn't mean I don't long for more like anyone else. I see people walk along with no pain, and I get jealous. I see people lazing around when they have more energy than I have, and I want to scream at them to go and live! They don't realise what a novelty these things would be for me. They don't spare a thought for how lucky they are.
In other areas I know I'll probably never have kids. It's a risk/ big strain on my body/ my life expectancy is reduced. That does not in any way make it easier to accept. I love kids and there are times I could cry (and do) at the fact that it's unlikely I'll have a family of my own. The typical husband, children, home, job, will never be mine and some days that tears me up inside. I can't imagine there would be a guy who would want to take on all my health issues and the fact they wouldn't be a dad, I would love to get married some day but would that be fair to marry someone I love then statistically not be around to live married life and put them through all that heartbreak of losing their partner? 

Acceptance is not a sudden lightbulb moment where you don't care about your problems or limitations anymore. It's more a calm, acceptance that you can spend all of your time railing against something that is unlikely to ever change, or you can find another way. It's not giving up. It's not being happy about your situation. For me it's about taking back control and being able to choose my own path.


Annual Review

So on Monday I had clinic at Harefield, but as my 5 year anniversary is coming up in a couple of weeks I had more of an annual review which is basically my normal clinic with a few extra tests thrown in and I thought you might be interested in seeing what goes on! 

The tests actually started on Saturday, with the ultra glamorous 24 hour urine collection! I had to make a "wee in a bottle" event on my phone to remind me! You basically do as it says on the tin, collect all urine over a 24 hour period the take the bottle full of wee as a present for one of the clinic nurses, lucky lucky ladies. 

Once I'd signed in on Monday morning, my first tests were bloods. There is only one vampire (as they are affectionally known by us patients) who is brave enough to bleed me, usually it takes at least two attempts to fill all the bottles but this time she got it all first time which is a miracle. I had to fast 12hours before the test because I had a couple of extra tests including one for cholesterol. Sueellen my lovely nurse kindly modelled the blood taking equipment for me to take a photo! 
After bloods I had oxygen saturations (measure of oxygen in the blood), blood pressure, weight and temperature all of which were fine. 

Next, I headed up to the lab for lung function tests. These are always a worry to me as they are really the most important tests of the day. Pre transplant it was always a huge deal and the decider between more meds or even a hospital admission. In the later years it was painful to see the numbers decline more and more. Now it's the difference between are things going well or do we have a potential problem? Even in the first couple of years after my new lungs the lung function wasn't climbing as quickly as we hoped so it's always a source of anxiety. Of course anxiety is the worst thing to engage with as it immediately stops you taking deep breaths. Anyway, the tests involve breathing normally into a tube connected to a computer. Normal breathing to start, biggest breath in you can manage, blow out as hard and for as long as you can and when you really can't push anymore a deep breath in. It makes you feel quite lightheaded! 
I needn't have worried because these were my best functions to date which made me very happy! To give you an idea the top two numbers are what counts, and pre transplant my top number was 1.4 and the second 0.66. 

I went back to the main clinic, feeling rather pleased with myself, and then saw the diabetic consultant and nurse practitioner. I have been using this monthly calendar to write down my blood sugar readings, I take them on waking, before lunch and before dinner. It's an ongoing battle between me controlling them successfully and the steroids making them go crazy, as well as any number of other things that can effect them. Again, I was slightly nervous about this as it had been a bit of a rough ride since I started the steroid treatment increase. I've felt under a lot of pressure and very disheartened after previous discussions. Therefore I was a little daunted as I handed her my numbers, and super surprised when she told me if she were diabetic she couldn't control them any better! That's like the ultimate compliment! It was really nice to have my hard work recognised and to see results, I put a lot of work in and sometimes it's not reflected so it was extra nice! 

Then I took you a random excited selfie in the bathroom! 

Next up was X-ray, literally took 5 minutes, and because I was on a mini high I asked if I could see the X-ray. It made my heart leap to see those lungs looking so clear.

After X-ray, I had to wait  a little while before my appointment with my psychologist, and later than that my consultant. It wasn't worth leaving the hospital so I ate some lunch in the car with my little buddy who came a long for the ride. Bless him it makes a huge difference to him and me for him to come with us, and he was such a good boy.

My appointment with my psych went really well and it was nice for both of us to discuss the progressed made and the ways in which I've changed since first starting our sessions. Things aren't always perfect but I'm more prepared now to deal with them. We also had a conversation about acceptance which I then continued with my consultant later that afternoon. I was going to include it here ug I think it actually warrants its own second blog so I'll be writing that over the next couple of days. 
In the break before I saw the doctor I had a few jobs to do. Firstly I went to deliver a card for my donors family. It's a process where I give my coordinators a card or letter, they read it and if it's ok (no personal details etc) they pass it on to the coordinators at the donors hospital. They then inform the donors family that they have correspondence, and then they can choose to pick it up, not read it, or to leave it until they feel ready to read it. I write every year on my anniversary just to say thank you and let them know they are in our thoughts. 
Second, I had baked some gingerbread for my nurses and the staff to say thank you for all they do for me. They went down very well! 

Thirdly, I had randomly written out a few little postcards and placed them round the hospital in random spots, addressed to inpatients or Harefield staff. They were just little notes saying if they were an inpatient, they were doing so well and that someone was thinking of them and wishing them well. If they were hospital staff, no matter what their job thank you for keeping Harefield going and making it a better place. I nearly didn't put them out but I'm so glad I did. One of my favourite nurses randomly found one and messaged me to ask if I had anything to do with it! I didn't tell anyone so she must be psychic! Similarly I heard that the inpatient ones were being shared on the wards which is lovely! I would never have thought people would be so pleased by them. It just shows how a silly little act can brighten people's day. 

Finally, I saw my consultant. He's not an easy man to impress, but it was so lovely to sit a chat with him and to see how his and my hard work had paid off. He was pleased with everything, my bloods were all good. There was a couple of issues that we discussed but again that's for the next blog. Overall it was great to have such a positive visit, and to see him so pleased with me, especially considering how ill I'd been at our consultations pre-tx. 
I'm not back officially for 6 months! 

I felt so genuinely happy and just filled with such an immense gratitude for how things are right now for me. Yes they can change tomorrow but for now all is well. Last week 3 of my transplant and CF friends passed away in quick succession. There are many more who are dealing with rejection, infections, 2nd transplants or other horrible health worries. It's been pretty distressing. It makes me even more grateful for what I have. For my donor, their family,  my parents, and all the staff here who have got me to where I am today. 50% of lung patients don't make it to 5 years post transplant and I am repeatedly reminded how lucky I am. 


PS: on a self indulgent note, if you like my blog I would be so grateful if you would nominate me for a Cosmo blog award http://www.cosmopolitan.co.uk/entertainment/news/a45587/cosmopolitan-influencer-awards-2016/ please don't feel obliged but I would love this blog to reach a wider audience so they can learn about how transplants save lives! Thank you x