Wednesday, 18 October 2017
It seems to be that time of year again, when everyone is coughing and spluttering and all sorts of cold and flu viruses are flying around; that time of year when we're urged to have flu jabs to help protect us through the winter season. I did have my flu jab all arranged, but then I've been having more fun and games with my health over the last few month or so and been unlucky to pick up a bad cold that turned into a chest infection.
Luckily and with much relief I've managed to shift it, but not without its problems.
A cold and chest infection is nothing to most people, but if you've had a transplant and therefore have little immune system then it can become a big threat to your health. Being immune suppressed means that your body really struggles to fight the virus and often the virus easily takes a hold and causes respiratory infections, which can become life threatening. It also takes a long time to clear any infections, as your body is unable to offer much resistance, so they tend to linger for weeks.
For lung transplant patients, it is even more dangerous and there is serious danger that the transplanted lungs can become damaged. This is a very real threat and actually happened to me earlier this year. I'd already lost twenty five per cent of my lung function due to a series of acute rejections of my lungs, then I caught a common virus called parainfluenza - it's not a strain covered by the flu jab and symptoms for healthy people are very similar to a common cold.
For me, it resulted in being blue lighted to my local hospital and then being transferred to Papworth Hospital, my transplant centre, for appropriate treatment, as pneumonia had took a hold in my lungs as well as the paraflu. My lung function fell down to less than twenty per cent and I was hospitalised for over three weeks. I was allowed home still on intravenous antibiotic treatment, had to be nursed by Rob and it took me months to feel better and recover some of my lung function. It happened back in March and by June I'd begun to feel much better in myself, but unfortunately only managed to recover my lung function to around fifty per cent.
That is the detrimental effect these bugs can have. I've been told that I'm unlikely ever to get back to having the seventy five per cent lung function I had back in February, and the hundred per cent I had only last year has become a long lost dream.
In many ways though, I know I was very lucky in the circumstances, as I've very sadly lost a few of my transplant friends this year to pneumonia and respiratory infections. I'm not only grateful I survived it, but grateful that I did manage to recover some of my lung function again too, as this isn't always the case for some. Although I'm quite breathless and limited now on walking, I'd been getting out and about with some help and I'd managed to put the wheelchair away again. I'd taken all the positives from this situation, that I'd come through it and was enjoying life again.
Obviously with that experience fresh in my mind still, catching another cold and it developing into yet another chest infection filled me with complete terror. I had to act quickly and my Transplant Centre did the necessary tests to identify the virus and under their direction my GP prescribed the drug needed to treat it promptly. It was a case of waiting and seeing and hoping against all hope that I wouldn't lose any more lung function. The drug - a powerful antiobiotic treatment for pseudonomas called ciprofloxacin - did the trick and cleared up the infection fairly promptly; however, part way through the course of drugs, I began to have an adverse reaction to it.
Unfortunately I developed tendonitus in both calves of my legs and then my left shoulder. Tendonitus and ruptured tendons is a well known side effect of the drug and it is excruciatingly painful. At the moment, it's left me unable to walk properly, but we've dug out the trusty wheelchair yet again so we're trying not to let it stop me doing things that I feel are manageable. It can take weeks or months to subside, so it's a case of waiting and seeing how things go. The bad response to the medication was just unfortunate and not life threatening though, so again, I'm counting my blessings that my lungs have managed to remain stable through this.
This latest cold has also resulted in an important stomach fundoplication operation having to be cancelled and having to cancel my flu jab. Luckily these are all being rearranged, but just catching another simple cold has managed to cause so much chaos yet again.
All these problems are why I try hard to avoid infections: why I'm always using hand gel and hand wipes and frantically dettoxing the house and always usually wear a scarf when I'm out in case some stranger decides to start coughing and spluttering around me. You'd be shocked how many people do this and don't even bother to put their hand over their face. It's why we say to friends and family please don't visit us if you have any infection, or why I might avoid meeting up with friends or visiting people who have infections. It's not because I'm paranoid, infection has become a real danger now in this fight to stay healthy. It really is a big enemy.
Despite all this though, it's so important to keep on living life to its fullest and make the most of each day, so armed with the hand gel, the dettox wipes, hand wipes, a useful scarf and a little caution, I'm trying to go out and about as normally as is possible... There's always an element of risk, but life is precious and needs to be enjoyed to the full.
Saturday, 7 October 2017
It's been a while since my last blog, as life has been busy over the summer and I've deliberately been giving myself some time out from some social media while I've been adjusting to yet another 'new normal' with my health. My lungs aren't functioning as well now following all the health problems I've had over the last year and I've been concentrating hard on building myself back up so I can remain stable in readiness to face stomach fundoplication surgery this autumn. I'd been 'all set' and geared up with a date for it, but now it's been postponed due to a cold and chest infection. Hopefully the operation will go ahead soon though and help address some of the problems with my transplanted lungs.
We had building work going on over summer too, which has kept us fairly well occupied, our
conservatory being rebuilt and having a whole new makeover. Ted, our cocker spaniel, also had his fair share of health problems too and in between all my hospital stuff and building work we've been up and down to the vets all summer, until he was properly diagnosed and had surgery to remove a grass seed that had travelled through his paw and embedded itself inside his leg.
All's well that ends well and Ted is fully back to normal and it's a joy to see him running around the garden and park and playing with his friends again. We managed to escape back to the Lake District for a few lovely days in early September and although it seems to be one step forward and two steps backwards with my health at the moment, I've been been enjoying the autumn sunshine and recuperating in my new conservatory, enjoying the peace and tranquility now the builders have finally gone.
Last weekend, we celebrated my fourth transplant anniversary - September and autumn will always feel such a special and emotional time for me and my family and we are all forever grateful to my donor and their family for giving us all this extra time together. We've been able to do so much as a family since my transplant and celebrate so much together.
This last year has seen some of the hardest and ongoing struggles with my lungs and health - it's felt like there's been a whole circus going on inside my lungs at times, but somehow we've managed to keep on overcoming the problems together as a family and with the strong support of the Transplant Team and friends.
All these struggles have left me with more fragile health and poorer lung function and exercise capacity, but somehow this last year has also been the year that has managed to surpass anything I had dreamed of pre transplant and I've been able to enjoy the most precious of moments.
Before Christmas I saw both Sarah and Rose graduate and this summer I was able to see Rose complete her teacher training and this September start in her first teaching post. These are things that I didn't ever think I'd see when I first fell ill and were things that flashed up in my mind that I would miss out on, having being given only a short time left to live. Four years on, I've been able to see these things actually happening for real and with much gratitude to my donor.
And then came baby Freddie. Back when I was sick, even contemplating grandchildren was beyond a dream and felt too far ahead in the future, but this has been the year that our first grandchild was born. My health struggles somehow pale into some insignificance when I spend time with Freddie. Sarah and Freddie visit regularly and it's been wonderful to spend so much time with him, watching him change and grow over the months. Sometimes all the health issues help emphasise just how precious some moments are and what is most important in life.
It's been another exceptional year to celebrate and now I'm starting year five. I cannot quite believe where time has gone since my transplant or since my diagnosis of Pulmonary Hypertension or how life has moved on in new and unexpected directions yet again.