Tuesday, 29 November 2016

A Mixed Bag

I went back in hospital on Thursday so that my Transplant Team could run some tests to see the how my lungs are doing and if they are recovering from the acute rejection and other problems that I've been experiencing over this last couple of months. They had identified two episodes of acute rejection, each being a different type. Yes, I'm finding out this 'R' word is a complicated thing now I have it. 

I just thought beforehand, that the most common types of rejection were 'acute' and 'chronic' alongside a few less common types. Over the last few weeks, I've since discovered that there are different types within these types and that this 'rejection' thing is all a very complicated affair. I am not going to try and explain it all, as I'm just about keeping up understanding what is happening myself and my tests were all about checking to see if the 'rejection' had been successfully treated. 

Prior to last week's tests, I'd had x-rays and a CT scan. These had also shown pseudomas, which have been identified as 'organising pneumonia' and some scarring on my lungs, which the cause is unknown. Unfortunately, I've been told that when a 'rejection' episode happens, and this is found in 'cell' changes within the lungs, for some lung transplant patients, this can trigger the pseudoma cells to start inflaming and causing problems too. Often pseudomas can be present, but don't cause symptoms. That was an added problem for me too. 

After two rounds of treatment to try and control all this, I had my tests and the findings are very much a mixed bag. On a very positive note, the organising pneumonia has improved and looks better on my x-ray than it did; however my x-ray still isn't as clear as it was back in August. My lung function has stabilised for now, which is a huge positive; again, it isn't as high as it was back in August. 

Unfortunately 'rejection' was still identified from the biopsies again, but as my lung function has held, my consultants are pleased that I've responded positively to the steroids up until now. On the whole, there are some very positive outcomes, but as the 'rejection' is still there, this needs to be addressed further, as does the scarring on my lungs. I'm going to have some further investigations to try and get to the bottom of things, so it's an ongoing thing for now. 

It was decided not to give me more methylpred treatment, but to increase another one of my immunosuppressants instead and keep a higher steroid dose, so fortunately I was allowed home. I was relieved about that at least, as it gives me chance to try and recuperate and recover and see how I'm doing for myself now. 

This has all felt a difficult couple of months and a lot of the time while on the heavy doses of medication and after some of the invasive procedures, I've felt unwell and not my usual self. There's also been a lot of very positive things going on at home, which have kept me motivated and given me good things to focus on, which have helped so much. I just want to thank everyone for their support to us all during this rough time - every single lovely message, card, email etc has really helped us through and still does. 

To finish on a very positive note, today has been a glorious day and I managed to take Ted on a lovely walk all around the park. It felt wonderful to be back outside and well enough to be having a walk again and I'm planning to try this again now every day and build my exercise tolerance back up to those longer walks and twice daily walks that I was used to doing. 

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