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.

Celebations and Three Years On...

We are now well into October and have finished celebrating some wonderful family occasions and milestones. We arrived back from beautiful Budapest after celebrating Rob's retirement and spent a day unpacking and packing again for a quick turnaround for a long family weekend get together in Whitstable. 

Our first celebration was our twenty sixth wedding anniversary - gosh the year has gone so quickly since we had our special twenty fifth celebration last year. These anniversaries are so important to us. Some ups and downs with health during this last year never fails to remind us to enjoy and make most of every good moment and of course of each day if we can, however the day falls. 

Next up was the extra special event, really the reason we all felt the need to be away together and away from life's pressures; a special time as a family and a time to reflect and be thankful for all the extra time we have been given together. It was the third anniversary of my heart and lung transplant; the day I received my gift of new life and a new start and new beginning. A day for us all to celebrate my life and the life of the wonderful person who was my donor. And also a day to give thanks to my donor's family who also gave their consent to give me my wonderful gift in their time of great sorrow. It was also a day for us to raise a glass to all those that helped save my life and who continue to care for me and keep me safe - all the fabulous staff at Papworth. 

We were able to watch a glorious sunset over the beach and sea in the evening, which felt like such a fitting tribute to this special day. It's been another wonderful year in many ways. We had a wonderful addition to our family in the form of Ted, our cocker spaniel puppy. Another dream come true and being fulfilled since my transplant.

Then there was the publication of my book 'Life is for the Living', another life long ambition come to fruition and I'm hoping it's going to still make a difference in raising awareness of Pulmonary Hypertension and much needed funds for Pulmonary Hypertension and Transplant support over the coming year. Fingers crossed. We've just achieved sales of over 850 copies now and with events and commissions from book sales raised over £2500 now.

Rob and I have enjoyed countless enjoyable occasions with family and friends and been able to be part of many interesting new ventures and projects. It's been another fabulous and great year. 

We thoroughly enjoyed Whitstable and had sunny, breezy and fresh, autumnal weather. We had lots of long family walks with both Alfie and Ted - the two cockers- in tow; coffee and doughnut stops by the harbour, fish and chip suppers, home cooked meals in the rambling beach house we rented, sunsets and roaring log fires - all pretty perfect. We could walk down to the beach from the house, feel the sea breeze in our faces and watch the tide turn and wind change as it reflected in the calm and rough of the waves. 

We've had a few challenges with my health this year, a few hospital blips resulting in more hospital stays and clinics and a closer eye on my health. I think we managed to take them in our stride and wade through them, coming out on top again. We always knew that the transplant road wouldn't be the easiest at times with the infection and rejection risks that transplant can pose, but we have been given a precious gift and I've stayed in better health than pre transplant thanks to receiving my transplant. An extra three fabulous years all thanks to my donor. The tide and the wind have turned in our favour again during this special and sometimes challenging third year and we are forever grateful. 

We finished our lovely break with a special family meal for Rob's birthday - another celebration of how far we have come. We have so much to look forward to and quite soon in this next year post transplant. Both my girls graduate in November - another thing that I'm delighted I'm going to be able to be part of. Then big excitement for the new year - our first grandchild expected in January. I feel priviledged that I've already seen pictures of the baby scans and already felt the baby kicking. Huge family events to look forward to and strive for. 

I'm well underway with my next book 'Heart Boy' - I shall let you guess who that one is about! And some more events, speeches, activities and projects planned to help raise more awareness of organ donation, transplant and pulmonary hypertension. So many busy and exciting things to look forward to. It's surely going to be another great year amongst whatever other unknown challenges or other exciting things that may happen. 

As I finish writing this blog, many of you will already know that we have unexpectedly been thrown a new challenge, which begins this next year, my fourth since transplant. It's unexpected, yet we have probably been always quietly preparing to tackle it head on when it came. Rejection. It's my first big run in with this one, but I know I've been extremely lucky to get this far without having to face it. 

It's a frightening and scary word in our transplant world, but with the dedication and commitment yet again from my wonderful transplant team and the love and support of all our friends and family, we are determined to fight positively through this. And I'm taking great deal of inspiration from a very courageous and brave friend, who has had and is still having a very tough and difficult time. As she encourages me on, she tells me, 'It's what we do Kath.' And it is. We will try and stay positive, take one day and one step at a time and face this head on. After all, there is still so much to strive for and too many wonderful things about life for it to be any other way. 

I will know more about what is happening over the next day or two and will keep you informed soon, but I've been warned and know that these things take time to unravel as each step is taken, so it's probably going to be an ever changing and ongoing process as it coninues to unfold. 

It is because of challenges like this that we have to make the most of every day, grasp every moment, celebrate and make the most of life. That's why we celebrate everything and try to enjoy it and although we've moved on so much from three years ago, that's why we never forget where we moved on from and the person who gave us this opportunity to do so. 

Life can be fragile and unexpected at times for anyone. Enjoy it, live it and reach for all your dreams.

My First Visit to the Post Transplant Clinic and Week 5

I thought a post about this may be interesting, especially for those who are waiting for their transplants and just like me won't really have a clue what to expect.

Once discharged from hospital, having a transplant is not like any routine operation, there are continuing risks of getting infections because of the immosuppressants that are needed to be taken to stop your body rejecting your new organs; the level of immunosuppressants also needs to be monitored to ensure rejection is under control and tests need to be routinely undertaken to check for rejection. It is not always obvious that rejection or infection may be happening, so us patients have to monitor our own weight, temperature and lung function every day as well as being monitored by the hospital. Having a transplant requires a lifetime commitment to medication and ongoing care. There is a swap of one set of medical problems for another, but hopefully with it comes the chance for a much better quality of life than you may have been having before and a better prognosis and that is why many patients dare to take the transplant option. For many people it is a life changing experience. 

When I arrived at my first clinic, it felt a bit busier and more bustling than the pre transplant clinic. Everyone seemed to know exactly what was what and I felt a bit like the newbie who didn't have clue what was going on. Rob said it felt like taking me to big school! There seemed to be a queue for the blood tests, staff were calling if there was anyone for an ECG or if there was anyone for lung function tests. To be honest I didn't have a clue what I was waiting for, so waited for someone to call me. The nurse called us pretty quick and explained all that goes on. Basically as a heart and lung transplant patient I need to have an ECG, lung function tests, x ray and blood tests each time I come. Everyone arrives at a similar time and you just have whatever test you need as you wait, so if someone calls 'anyone need a lung function test' and you do, you just go and get it. If there is a queue for blood tests, then you might pop and get your x ray or ECG while you wait. Pretty quickly I had all my tests done and then you have to wait a litte while to see the consultant to discuss results and any problems or queries. 

The blood results come in the following day, if all is ok then you don't hear anything, if any medication needs adjusting, such as the Prograf (tacrolimus), the transplant nurse phones and tells you what adjustments need to be made. So all pretty much simple and straight forward stuff, similar to the pre transplant clinic, but you organise yourself and take responsibility a bit more. 

It takes the whole morning more or less, my visit took a little longer as I needed a few extra things doing, such as having some stitches removed and needing some extra medication from the pharmacy. I also had a bronchoscopy booked for the afternoon, which is not usually routine for week four of your transplant, so they needed to put a cannula in for me too. 

So finished and done at the clinic, everything looking fine, it was off down to the Thoracic Day Ward for me, a place I know well from my Pulmonary Hypertension days. I like this small homely hospital for that, it makes you feel at ease knowing where you are going to be next and having had three bronchoscopies already by then I felt at ease what to expect for that. I was just bushwacked after an early start and long morning and it still being early days after my operation. Having a bronchoscopy means 'nil by mouth' from breakfast, so I felt starving too. I knew I must be getting better, because a week ago when I'd had this done and been 'nil by mouth' I didn't even feel hungry! 

A bronchoscopy is nothing to worry about either, I was scared when I went down for my first one as I didn't know what to expect and I don't really like the thought of people shoving things in my mouth and down my throat. They talk you through everything and everyone is kind and caring. It's always been the same staff helping too, along with the doctors  and consultants who by this stage you are getting to know well and feel very confident with. They spray your throat a little to numb it, which isn't so bad and tastes a bit like banana and then they give you an injection, this just sends me off to sleep and I know nothing of what goes on. It may be a different experience for others. I usually wake for a bit when it's done and then sleep again for an hour! So seeing as I seem to be having a lot of these at the moment, I don't worry about them at all anymore.

Although it would be good not to have to keep having these done, there is also something very comforting about the fact that the consultants are keeping a very close eye on everything, helping me to clear my new lungs while they are healing (that has been a major struggle for me at the moment and is a persistent big problem, which is ongoing) and they have also been checking that everything else is healing as it should be. I have not minded having to have a few extra bronchoscopies whatsoever to help me with this. They have explained very clearly to me why I have this problem, which is helpful for me to understand and helps me to see that things will improve. It is all to do with the wounds inside me healing up and swelling from the operation itself. Also, as a heart and lung transplant recipient I only have part of my own windpipe and the other part is from my donor, this means that nerves have been severed, these nerves normally send messages to help you cough. So I cannot cough as well as normal at the moment, but should learn how to manage this over time. As the wounds heal and the swelling recedes things are expected to improve for me over the coming weeks, which I hope will then be another huge step forward. 

After a day back in hospital like that, I found myself really tired for a few days, so just followed what my body was saying and rested plenty. I was also really pleased, happy and reassured that everything is still going well. When you first go home, the hardest thing is probably feeling a little vulnerable after you've been surrounded by doctors and nurses all the time, who just step in if things feel wrong. 

Suddenly you are then at home without this support close to you and you can feel a little bit edgy and nervous. I think coming home so soon added to this, although at the same time it was absolutely fantastic to know I was doing so well that I could come home less than three weeks after my operation. I think it is a matter of finding your feet and building up your confidence that you can cope and this begins to feel a bit easier as you begin to feel a bit better too. It is good to go back each week and get some reassurance though. It does help with your confidence to get on with your new life and  you know the team are always available on the phone to help too and I have had to ring them a few times and they have been really helpful and reassuring, however silly or small the problem. 

This week I've also had a very successful visit to my GP, thanks to a very lovely and understanding receptionist at my doctor's surgery. My previous GP, who knew all my medical history has left the practice and it was a case of making some proper contact again with a new GP, who would be able to fully understand my new complex needs and medication. When I went to see my new doctor, he had already spoken to the team at Papworth and we managed to organise who would be prescribing me what when I need new medication. Some of the medication is very expensive, so Papworth will prescribe me some and the GP is going to prescribe all the more routine stuff. Another big thing sorted out and step forward. 

I also had a visit from a local Hertfordshire Community Cardiac Nurse, this got triggered from a request from Papworth's physio for Cardiac Rehabilitation. She spent a lot of time with me and gave me some helpful tips and it is nice to know I can contact her if I need anything and that there is some support locally. I'm waiting now for an assessment for cardiac rehabilitation or pulmonary rehabilitation, the physio will assess and decide which is better. Somehow I'm feeling a bit of an odd case, because I probably fit both in some ways with my brand new heart and my brand new lungs! 

So a very productive few days since my last blog! At this week's clinic, I will know what's what, I won't feel such a newbie anymore, I should feel a little better and improved even and better still, I should be done by lunch if there are no problems, so far there is no bronchoscopy planned, so all should be less tiring. 

Onwards and upwards still!