Coughs and Sneezes Spread Diseases

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. 

The Fitbit

I can't remember the whole context of the conversation, but someone recently made a comment to me about Fitbits and personal fitness trackers. It was something along the lines of 'and these people who wear these wrist band things and are constantly checking on their fitness all the time...' The person wasn't so impressed with the idea of fitness trackers and disapproved of them. I found my eyes casting down towards my wrist and staring at the Fitbit I was wearing. Should I be embarassed I'm a Fitbit wearer and admiit that I'm actually quite a big fan of the fitness tracker? I'm not totally obsessed with my Fitbit, but my fitness is important to me, however limited I become and I've found my Fitbit a very useful tool to measure what I'm up to. 

I bought my Fitbit at the airport a couple of years after my heart and double lung transplant, we were en route to Rome. We were about to embark on a three week trip around Europe. Rob and I enjoy visiting cities and I'd always been curious about how far we actually walk when we are exploring - I always thought it may be much further than I imagined. That was my main motivation for buying it, together with the fact I'd just returned from taking part in the British Transplant Games and keen to build up my fitness even more, was trying to aim to walk the NHS recommended 10K steps per day to help me. I thought the Fitbit would help me to track this target. 

On the holiday, I found that yes, we did walk far more than I might have guessed, exploring museums, galleries, parks, shops and ambling around streets and I had a great headstart on my new 10K per day target. Way exceeding this target most days, I returned from holiday feeling fit and well and quite pleased with myself and determined to try and keep up my 10K steps using my Fitbit to track my progress. 

Recently there's been research and press reports suggesting that 10K steps per day may be too many steps for some and may be dangerous to their health and fitness. Well that's just common sense surely? If you you've been unwell and recovering from an illness or an operation then it may not be sensible thing - things need to be taken more slowly. Having been chronically and terminally ill before my transplant I know that the 10K steps wouldn't ever have been achievable for me then. It was still important to walk, move around and keep as fit as possible in order to withstand the ongoing challenges of poor physical health though.

After my holiday, wanting to maintain that healthy holiday feel, I continued with my 10K steps target and using my Fitbit tracker to keep a measure of how I was doing. I tried to motivate myself with new ways to achieve it and even decided to have a dog, so I had no excuses to stop me walking every day. Before Ted, my cocker spaniel arrived though, my health took a dip and my 10K step target dwindled away while I was poorly for a few months with CMV virus and then recovering afterwards.  

The Fitbit became really useful in helping me gauge how far I could manage to walk, it helped me readjust targets and aim for more as I recovered and started to get back on my feet again. It helped motivate me in recovery, as I could see a difference in how much I was walking each week and over each month. 

I was lucky to find myself back to full fitness, with Ted my cocker spaniel in tow, smashing the 10K steps together and becoming the strongest I'd been for years. My lung function on my regular clinic visits had always been pretty good, at 90%, but suddenly my tests were showing 100% lung function, which was totally amazing after what had been a big setback and for someone who'd undergone a lung transplant. 

Although I managed to achieve this, there were to be more trials and tribulations with my health unfortunately due to the virus that originally set me back. It reactivated and led to a period of acute rejections with pseudonoma infections. With my new lungs now damaged and working at 75% it was back to the drawing board once again. I used my Fitbit to challenge myself with new adjusted and lowered targets aiming to build myself up slowly but surely. I hadn't managed to improve on this when I caught a bad bout of flu alongside a form of infectious pneumonia.

This time recovery has been a long slow road - there had been too much strain on my lungs this time coming on top of the previous acute rejections and organising pneumonia, which my lungs are still and were at this time being treated for on top of the new problems.  My lungs were completely struggling and the doctors didn't either bother to measure my lung function while I was in hospital, as I couldn't even breathe properly let alone do blows for tests. There were no steps happening, but the Fitbit was actually useful as a watch as time ticked away in the room I'd been isolated in. I was even surprised when I realised how much I'd actually been using it purely as a watch all this time. 

During these periods of illness and dependance on higher doses of steroids, my sleep was poor, often interupted and I was suffering from insomnia. The Fitbit helped me gauge my sleep patterns and see that as I improved, my sleeping although not perfect was improving. Again, this was reassuring and encouraging. 

A few months on and it's felt a slow progress, but using the Fitbit, I can see in black and white how far I've come. After about a month at home, I was managing around 1K steps a day and 7K steps a week, only a fraction of what I'd been used to, but it was something and a good start. I figured the more I could move, the more I could help clear my lungs of infection and help them to work again. Weeks on and I could see this improve more and more - another month and I was managing 2K to 3K steps a day, around 17K steps a week, undertaking small walks and activities over the day. 

This helped me confirm in my mind that things were improving, that I was actually making some progress - sometimes it's hard to see how you are doing because of the frustration of not being able to do what you could once manage. It can feel one step forward and ten steps back on a bad day. A few months on and I'd built my lung function up to 40%, which was still very limiting with breathlessness, but I was walking again and managing to be out and about with family and friends and I was so grateful for that and encouraged and motivated by the fact that there was some improvement. 

Following some further additions and tweaks in medications I was back in clinic this week to see how I'm getting on. Fortunately following a few medication changes I'd been feeling better still and able to do more and using my Fitbit data I was able to say I'd gone from only being able to do a thousand steps or so each day to now being able to do 4K steps on most days and had done 28K over the last week. I was delighted when my lung function results reflected an improvement too and showed my lung function had increased and is at 50% function now. 

There is still a way to go yet back to fitness yet, my consultant has explained that it's unlikely I will be able to reach the high lung function I once had, but we are all encouraged there's a significant improvement and I'm going to carry on using my Fitbit to help me increase my walking further if I can and hopefully in turn push my lungs further and squeeze that extra bit more from them. For me, I've found that using a Fitbit has been a very positive thing. 

What are your thoughts on Fitbits? 

It's What You Can Do, Not What You Can't

Do you ever collect things? I have a few things I like to collect and as you can see from the pictures of my fridge and freezer, fridge magnets are one of them. They have over the years become much more than a few tacky fridge magnets stuck on a fridge door though. 

A few of them are left over from when the girls were tiny and growing up - we would always have something stuck on the fridge during those times from drawings to ABCs to exam timetables and revision notes... The few remaining ones are always happy reminders of these times. A few years prior to my falling ill with Pulmonary Hypertension we began to travel more and more together as a family and I began to pick up fridge magnets wherever we went as little momentoes of our travels. Again the fridge magnets remain happy reminders of these lovely and precious times. 

Then out of the blue came the illness with a very poor prognosis and a long wait for a heart and double lung transplant. Life changed dramatically. It became a fight to survive and a fight to enjoy and make the most of out every moment. During this time, as a family we tried hard to go out and about as much as we could - afternoons out, days out, holidays in the UK - whatever we could manage with my ever changing needs and hospital visits. Everything we managed felt like a big achievement and I avidly began collecting more and more fridge magnets as momemtoes that I was able to still go out and do things in these difficult circumstances. We endeavered to live life to its fullest while I could and the fridge magnets became a reminder of this, especially on down days when I was too poorly to go out.

A glimpse of the colourful fridge and all the magnets that represented so many wonderful memories we'd made together would inspire me on to keep wanting more of life, and to keep on making more precious memories. The fronts of the fridge and freezer filled up with more and more magnets, more happy memories of precious times together when time was running out. Focusing on all those things I could do, rather than all those things that I couldn't became a real priority. So much had been so cruelly taken away, but the ever growing magnets on the fridge always showed how much I could still do and how much there must still be out there to enjoy. 

Life changed again with my heart and double lung transplant and the generosity of my donor and their family. I was given my second chance and suddenly free to travel the world again. We carried on making the most of those precious moments and making the most of my better health. We were constantly physically pinching ourselves every time we visited somewhere new and I didn't have to struggle any more. There were more fridge magnets added to the big collection; more memories; more reminders of how special life is. 

Now I've hit problems with my transplanted lungs, as they've been hit with one thing after another recently, which has significantly reduced how they can function. They've been hit with recurrent CMV infection, acute rejection episodes, pseudomonas infections, double pneumonia, parainfluenza and silent damage by stomach acid. Their deterioration means I'm very breathless and feel weak when I try and move and walk.

I've just been back to clinic and the positive news is they have remained stable over the last four weeks since I was last checked so that is good news for now at least. I'm in the middle of more tests and trying new medications to help keep things in balance and under control. It's also highly likely I will be having some stomach surgery soon after I have met with the gastro surgeon in early July. There are a few mountains to climb yet, but it's all in the aim of keeping me stable and preventing more damage to my lungs and even giving the opportunity for things to improve if I'm really lucky. 

With all this happening at the moment, we recently had to cancel a holiday we'd planned. We were supposed to be going on a cruise to the Norwegian Fjords visiting many new places and yes probably collecting more than a few more fridge magnets too. At the time of cancelling it, I was practically bedridden and so poorly that it really didn't matter and I didn't really care. I recall thinking I would be so grateful if I could just walk down the garden again. I'm managing that now and I'm so pleased and relieved I can do that and even get out and about now with help. There are times when it's not all about doing 'big' things and it's brought home to you starkly yet again, that the simplest of pleasures are the most important ones. 

The fridge magnets are always a bright and optimistic reminder each day that life can still be lived to the full, whatever the circumstances - even in those of feeling unwell and with limited mobility. I just need to adapt again like I've done before. As I glimpse them each day they shout out, 'You can still go out and do things, discover new places and enjoy yourselves.' We have to do it differently though and consider what is manageable such as whether a place is wheelchair friendly and asccessible; whether it is flat to manage a short walk or has benches or seating to sit and rest on; whether there's refreshments and loos or not, whether there's higher infection risks. We have to think of timings so I can enjoy outings when I feel my best during the day, allow for tiredness and rest periods and be ready to change plans and ideas at the last minute if my health so dictates. 

Under our own steam and pace I know we can still do so much and enjoy life. Since I've been well enough to go out and about again, that's what we've been trying hard to keep on doing. It is about focusing on what I can still do and not fretting and dwelling on what I can't. There's not much point on wasting any time and energy dwelling on the 'can't dos' - there really isn't time or energy for it anymore. I've already drawn up a list of places I want to visit locally, we've already enjoyed a quiet and relaxed break in the Lake District and proved to ourselves that we can get out and about now and we're making more plans to escape somewhere nice soon in between all the next round of tests and clinic visits.

I expect our fridge magnet collection to continue to grow and grow this summer. Hopefully we won't run out of space, but if we do that will be a good thing.

And that was May ... so now it's eight months on!

Now we have reached June. It feels like quite an achievement to have got this far. We have had a bit of mixed weather this last month, but we have had our first bout of hot weather amongst it too. 

We enjoyed our first barbeque of the year, just like many other families. It has felt especially good to be back outside and enjoying the garden and the longer days and sunshine once more. To be just sitting out in the garden relaxing and enjoying a barbeque with my family has felt marvellous. Since last October it has always been just one step at a time, no thinking too far ahead, just one step forward and seeing where each step leads. I didn't really dare think ahead to summer and enjoying barbeques back in October, so they feel quite special moments that I'm able to enjoy now. I'm always grateful for each day as it comes. 

Better still I am back making myself useful in the garden again. This year I'm making up pots and baskets and doing lightweight jobs. I have to wear gloves and keep my face covered because of the fungal spores in the soil, which can be dangerous for my new lungs. I've also got to wear a sun hat and sun cream as my risk of skin cancer is very high due to the immunosuppressant drugs. 

I'm trying hard to follow the advice I've been given, as I want to give myself the best odds in staying well. It is easy to become relaxed about it now I feel so much better and I don't wish to wrap myself in cotton wool, but when I think back to where I have come from, then I know it is better to be cautious. After being given a new chance, my biggest dread is ending up back in the same place again or even worse, so it is the main priority in my life to keep myself as well as possible. 

My lung function is good still - well better than ever - and I'm working hard on building up my fitness levels and stamina. My SATs are at 99% - better than Rob's! I try to keep myself as active as possible now and find new ways to keep exercising that I enjoy. At the moment several walks around the garden carrying a half filled watering can is proving a good workout on an evening, as is a bit of gardening - all that bending, stretching and squatting! I still like walking though; I still can't really get over the fact I can go for a walk. Rob is starting to complain that I keep making him do lots of walking and I'm walking faster and faster. I'm still using my exercise bike, doing some basic yoga and step aerobics and I think all of this is really helping my new heart and lungs. 

I don't pinch myself every five minutes like I did in those first few months, but I do still pinch myself, maybe every day rather than every minute! I often have moments that feel totally overwhelming, it isn't necessarily when I'm doing something extra special or new; it is more usually when I'm doing something like pushing a shopping trolley around Tescos or stood there wading my way through a big pile of ironing, just something very ordinary or mundane. I think it is because when I was ill, I felt so robbed of being able to do such basic things and had lost so much of my independence. It is just so wonderful to have it back again once more. Being able to go out on my own once more and walk around like a normal person can still feel shocking. It sounds silly to most people I know, because most of us just take being able to walk for granted, I know I used to. 

A day still doesn't go by where I don't think about my donor and their family and what they have had to go through. They have given me so much I don't think I will ever really be able to put it into words. 

They inspire me on to keep making the most of my new life. 

Planting up the summer bedding plants, gloves, scarf, sun hat and all, but hey I'm gardening again! 

Lazy summer barbeques! That's the life! 

Time for the May Clinic Visit

There is nothing like a visit to clinic to bring you back to reality. I'd been given a whole eight weeks off, which was fantastic, but it had flown and come round again really quickly. It is a catch twenty two really, it's great to be away from doctors, tests and hospitals and be leading more of a normal life, yet it is a huge relief in some ways to be back at clinic to get checked out and be told by doctors that all is looking fine and going well. 

So I had all the usual tests: bloods, x- ray, ECG and lung function and then saw the transplant nurse, followed by the doctor. Once again, thank goodness all is looking good and I was told that whatever I'm doing to keep it up, as it is working well. After the blip with my lung function recently, it is now higher than it's ever been, so we were all delighted with that. 

They were going to let me go a whole three months until my next clinic, which is pretty good going seeing as I'm only seven months post transplant, but there is still the ongoing issue of the chronic cough I have developed since my operation. They are concerned it may be due to stomach acid - this is a very common problem after a lung transplant and can be very damaging to transplanted lungs-  therefore I've been booked in to have tests on my stomach over a couple days in June. I then need to go back in July for my results. That is still a month though before I'm back at hospital and two months before I'm back at clinic, so that is great.

The only thing that may change this is that I'm still waiting for news about my other surgery from the Lister Hospital and the transplant doctors have advised that if it cannot be done there, then they can arrange for it to be done at Addenbrookes, who work more closely with the Transplant Team. I don't think it will be too long now before I know properly what needs to be done next and where and what I have to deal with. 

I am just pleased that so far everything is still going well and I'm positive that these next two hurdles of more surgery and tests for my stomach, will all just get sorted out and be part of the process of getting me even more better and back to normal. 

We managed to escape clinic fairly early and as it was nearly lunchtime, we went off to a nearby village pub for some lunch. We like to try and turn a hospital day into a more positive day if we can and feeling pleased with the outcome of my visit, we went on to St Ives, which is only a few miles from Papworth, but is a very picturesque, historic town. 

We had a browse around the shops and then had a lovely walk through the meadow by the river, it was a gorgeous sunny day, rounded off with an afternoon tea at a river side cafe.  We have visited St Ives once before my transplant and I couldn't really manage very much or walk very far. 

Life's feeling pretty good now - what with the glorious sunshine, coupled with a good clinic visit and the incredible difference in what I can now physically manage - it doesn't really get much better! 

Genetics may be the Heart of the Matter

It's May already and although the first of May has started off wet and cool it can often be a glorious month, so I am really looking forward to it. The forecast for the first bank holiday of the month and this weekend is looking good. I'm now seven months post transplant and still doing incredibly well.

I had a bit of a blip with my lung function levels during the Easter period, which went a bit haywire and dropped a lot more than they should, but as everything else showed up totally fine I just had to keep a careful watch on things to make sure they didn't continue declining. It was put down to my reduction in steroids, which the team had reduced on my last visit. I ended up missing the PH conference because of it, but decided it safest to err on the side of caution, as I wasn't sure if I was coming down with something or not and my immune system is already very low. I didn't want to risk the chance of infection as the conference is very busy with lots of people, but I was disappointed to miss my friends. My lung function readings are now much better again and back to where they were, so I think I did the right thing.

This month there is a feature on the genetics of Pulmonary Arterial Hypertension in the British Heart Foundation magazine, 'Heart Matters' and Professor Morrell, who is heading the research, explains all about it. I was also interviewed for this feature, having had Idiopathic Pulmonary Arterial Hypertension before my transplant and having been tested to see if I carry the known genes that can be an indicator that it may be in the family. The research work is a continuing process, but there is hope that there may be a breakthrough, which will enable the development of future drugs to help all PH sufferers. The British Heart Foundation have given generous funding to enable this research. Below are the links to the articles.

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah/kath-graham.aspx

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah.aspx

A cure or breakthrough cannot come too soon. Some of my friends are really suffering with this disease. Several are waiting for transplants and are having to face long waits because of the shortage of organ donors and then they will have to go through the process of the transplant and the ongoing care and drugs that are required afterwards. If a cure could be found or better drugs to control the condition then patients wouldn't have to face these options. 

Some of my friends are coping with other diseases, such as Lupus, which has also caused their PH. Others have PH through having bloods clots on their lungs and although they have had their PH improved through having the Pulmonary Endarterectomy operation to remove the clots, some of the clots are too distal for removal, so they still have to cope with PH. Many PH patients are not eligible to have a transplant, so the biggest hope is that a cure can be found or a breakthrough that can help the treatment of PH more efficiently. 

We all live in hope for this day and for a breakthrough to come soon.