Warming Autumn

This week saw the end of October, the clocks changing and shorter days, Halloween celebrations and the start of a brand new month. Here in Hertfordshire, we've been enjoying some late autumn sunshine and some glorious autumn colour. 

It's all felt very uplifting, as I seem to have had one thing after another healthwise over this last month or two and have been confined to home on and off during it all. Firstly, I caught a bad cold and following from that a chest infection, but thankfully with a strong antibiotic I managed to shift it without my lungs being damaged any further. That was such a huge relief. 

Next up came an adverse reaction to the antibiotic drug I was prescribed - the drug comes with a big warning that it can cause tendon inflammation and tendon rupture. All the drugs I have to take come with all sorts of awful warnings, so I wasn't too concerned. Basically transplant patients have to take the prescribed drugs to stay alive despite the toxic side effects. After a week on this drug though the calves of both my legs became inflamed and very painful and I had to stop the drug immediately. This is now an ongoing issue, but I'm happy it's very slowly improving. It is going to take a month or two to get back on track, but in the meantime it's a big struggle to walk and the only way to improve things is to rest up. It's just been pure bad luck and an inconvenience, but hopefully nothing to worry about too much in comparison to the lung problems. 

I then managed to pick up a sickness bug - the winter norovirus - which seemed to go on for days on end because of being immunosuppressed. These types of bugs can be worrying too, as it can affect the immunosuppression drug absorption and then lead to rejection. Luckily and with much relief I managed to keep up with my immunosuppression meds and eventually shifted that bug too without a hospital visit or stay. The only good thing about this experience was that I had to stop and rest totally, so that helped my legs improve a little - well every cloud and all that...

Anyway having felt it's been a little stop/ start during these autumn months, the week started with a gorgeous sunny day and I was feeling much better, so we decided to get out in the fresh air and see some of the lovely autumn I feel I've kept missing out on. We enjoyed a few days out, Rob pushing me around in my wheelchair and with Ted in tow usually leading the way! The wheelchair has kept coming in handy over this last year and this time has been a godsend because of the situation with my legs. 

I felt like a child at Christmas going around the gardens at Wimpole Hall - I think just because I'd been stuck in for days and having been worried about ending up back in hospital. It was just such a mild and beautiful day too for the time of year. We had lunch in a quaint little Cambridgeshire pub first called 'The Poachers', which was lovely and I was surprised by how many plants were still out in full flower in the walled garden at Wimpole. It was good to be out enjoying the real world again and enjoying nature - warm sunshine, beautiful warming colours and warming food.   

When the weather was good again the following day, we went off to Ashridge Estate: I particularly chose Ashridge because it's a huge ancient woodland and I thought the trees would look beautiful at this time of year. We weren't disappointed and there was a reasonable disabled route through the woodland and plenty of flat roads for the wheelchair so we had a good explore around. There's also a great little outdoor cafe restaurant, where we enjoyed lunch and then later an afternoon tea - well I do need feeding up at the moment! 

I'm working hard on getting myself back fighting fit now - obviously exercising and trying to push my lungs a little is a problem when I'm struggling with my legs, but I'm trying to stay as active as is possible and move around as much as I can. Rob's also been trying to feed me up with lots of nutritious homecooked dishes, so I've been spoiled rotten yet again. It seems to have been a recurring theme this year. 

I feel so sorry for him with all the running around he seems to be constantly having to do - always caring for me and nursing me as well as being chief cook and bottle washer. I'm never sure who it's worse for - me or him. 

It's been a really uplifting week and good to be on the mend again. Besides being out and about a little, I've also been back to my cooking again, with much relief to Rob. Here's one I cooked last night - lamb hotpot with crusty homemade bread... nice and warming for these colder and darker nights. 

Small Steps

It's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.

Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.

By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become. 

A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward. 

My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here. 

I'm looking forward to a quiet and relaxing Easter weekend with my family and just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy.