I had clinic at Papworth today. It wasn't all good news, but I feel like we've moved forward a step or two.
Firstly, I had my lung function (lung capacity) and weight checked. My weight was up by 0.4kilos, which is not much but the most important thing is that it hadn't dropped and with how unwell I've been, to not only stay stable, but a small gain is a really good thing. Unfortunately, it means I'm still not at a good enough weight to be referred for transplant yet.
My lung function was down by 10% since mid February and was just 22% which is the lowest lung function I've ever had, this means I'm now functioning every day on less than a quarter of a 'normal' person's lung capacity. This just ties in with how bad I've been feeling, sometimes the stats and figures don't match up with how you're feeling, but today it did.
I find sometimes I play down how bad I am feeling to my team because I'm scared they will want me to stay in hospital, you see Papworth is 1 hour and a half away from my family and friends, so it's not so easy for people to come and visit, so it can be a really lonely experience and when I'm not feeling well, sometimes all I want is support and company, but being so far away, it's not always an option. So I try my hardest to avoid being admitted but sometimes I don't have much choice, luckily my team were understanding that we have important things coming up so I asked if I can hold off going in until the beginning of May, so I'm booked to go in for 2 weeks of IV antibiotics from the 3rd May.
Towards the end of the IV's I will have my feeding tube fitted but because I am so unwell, a general anesthetic is not safe for me, so I will be sedated. The feeding tube will be fitted at Addenbrookes hospital, then I'll transfer back to Papworth where they will closely monitor my pain, test out different feeds to find one that is suitable for me, keep an eye on my blood sugars because if my sugars are high I will not gain weight. Then finally when they are happy for me to go home (which should be around 4-5 days after the operation) I'll be able to leave and they said in an ideal world, if all the factors work such as my blood sugar control, I should be gaining a couple of KG's a month.
I only need to gain 6kilos until I have a healthy BMI, so I will work my damn hardest to make sure it is a smooth, swift weight gain because as we realised today, my need to be on the transplant list is getting greater every day, if my weight had been okay I would have been referred for transplant in October, which could have meant I was listed at the beginning of this year.
Every week that goes by, is another week where I am still stuck in limbo. I know being on the list will be a horrible, difficult time, but at least there is still that glimmer of hope that the call could come at any minute but at the moment I'm at the point where I need to be on the list at least and I can't, I wish I could see the light at the end of the tunnel in the form of new lungs. That is why I'm going to work so hard to gain the weight I need because it's getting scary how much my lung function is dropping.
So yes, as I said to start with, my lung function wasn't great and it was a bit of a slap in the face from reality, but at least we now have an idea of what/when it could happen. If all goes to plan I could be referred for transplant in perhaps two months, then if they say I am a good candidate for lung transplant, I have to attend a 3-day assessment full of all kinds of tests and chats, then by the end of the week you will know if and when you will be listed.
My road to transplant has been a really difficult, stressful, rollercoaster ride which has by no means been easy. At times it has knocked me down and I wanted to give up, I had so many thoughts going on inside my head about whether I wanted to go through with transplant to begin with, when they said I needed to gain two stone it seemed like an almost impossible target, but I'm now over half-way there and further than I could have ever imagined. Which has made me even more determined to get there, I feel stronger because of it and if I'm able to meet the target and achieve what they told me was "not impossible, but very unlikely" then I seriously can achieve anything!!
I finally feel there is a really good chance I will actually get on the list and I'm hoping when I do finally get assessed that will all work out well and I can start looking forward to the possibility of life after transplant.
It's all swings and roundabouts as they say :)!
Thank you for reading.