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!
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!
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