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? 

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. 

Everything Looks Golden in the Sunlight

As we walk along the pathways in the woods and along the fields I think and reflect over the last six months. It's a glorious and mild day today, the birds are singing louder and the days are a little longer now. The last few weeks have been quite dismal and wet and looking out to the horizon, everything looks warm and golden in the sunlight today.

I remember walking these pathways with Rob and Ted, our dog, late last summer or was it early autumn?  I can't quite recall properly, as so much has happened. One thing I do remember though, was that the weather was still warm and the sun was shining. We'd had a good summer and I'd said to Rob as we'd wandered around enjoying our walk and the countryside, 'Is it wrong to be looking forward to winter already? Those muddy walks; crisp fresh air; wellington boots; warm, woolly jumpers...' Rob was retiring and there seemed so much to look forward to. 

Then life threw one of its spanners in the plans as it does and we ended up back on a roller coaster again, as I battled with acute rejection in my lungs through the autumn and into December and we missed coming back here to the woods to do that winter walk and all the walking and exploring new places we'd planned to do. Autumn and the lead up to Christmas had been a difficult time, but luckily things improved with my health by Christmas - yet another crisis steadied. 

January and things were feeling much brighter and we were getting back to some normality, expectantly waiting for Sarah to have her baby. She was two weeks overdue when the baby started to come and things didn't go quite to plan, as often happens with pregnancy. There were a few complications, a few sleepless nights and a few worries as the labour stretched on for days. Then all was well and ended well with the birth of our beautiful grandson Freddie. It was a huge relief. 

We were back to some normality once more. It was fantastic to feel well enough to help out in those first few days when Sarah and the baby came home and I felt so grateful my 'rejection' had stabilised itself. 

Then the roller coaster set itself off once more. Sarah was rushed back into hospital with complications. We were thrust into the deep end of grandparenting and found ourselves late one night suddenly caring for a newborn baby while worrying about our daughter in hospital and what was going to happen next.

I'd begun to feel by the end of last year that I had little reserves left to pull on anymore; that I was losing the inner strength to keep on coping with all the issues that just my own health keeps on throwing at us. You can surprise yourself sometimes though and strength can suddenly come out of nowhere. We somehow rallied to the crisis. I suppose you just have to. Rob said, 'It's what we do best!' 

After she was treated for a few days in hospital, Sarah and her family came home to us for a few days while she recovered and then felt fit enough to go home. A happy resolution with mum and baby both doing fine again.

So we're back off the rollercoaster, back on level ground again, feeling relieved and thankful and during February we have been settling back down to normality once more. Back to those plans of last September. Picking them all back up again. 

It's great to be back walking in the countryside once again, just quietly walking our dog, enjoying the mild weather and winter sunshine. Enjoying peace and tranquility and some normality. Making new plans, exploring new pathways again. 

We are a little different than we were six months ago when we last took this walk. We've been starkly reminded again with the events of the last few months just how fragile health and life can be and how lucky we have been yet again. My lungs are a little different than before, they don't work as well unfortunately. We're still unsure yet whether they ever will. Only time will tell. 

I have more tests planned and another MOT at clinic in a few weeks to see how things are. There is one thing for sure though, I'm determined that some breathlessness isn't going to stop us enjoying life again and making plans to do new things. I'm determined to keep on trying to get fitter to see if it can help my lungs improve. 

We are different than we were a few months ago too, because we are grandparents now. We have a beautiful baby to enjoy and spoil and I'm determined to stay well so I can enjoy him and watch him thrive and grow. I don't think I could have any better incentive. 

Today everything looks golden in the sunlight. 

January

January and arriving with it another brand new year and leaving a previous one behind. January 2017 rings familar with January 2016 for me. I started 2016 waking up and in my own bed and feeling much better after arriving home late on New Year's Eve following nearly a month in hospital and a few months of being unwell. Bring on January 2017 and although I'd not physically been in hospital for a month, I'd been in and out of hospital and made many trips there due to being seriously unwell yet again for those months ending the year. So both times starting a brand new year with fresh new hope and resolve to recover and regain my health once again. And starting the year with an even bigger appreciation and anticipation for life and what this new year may hold.

I'd begun to feel a lot better and brighter during those immediate few days before Christmas. I didn't dare to hope that it might last and I might feel well again. But it did and I'm much better now following those two awful bouts of acute rejection and all that comes with it. The heavy treatment, the harsh side effects and the mental and emotional anguish that comes with knowing that my body doesn't want accept my new lungs. The not knowing which way things may go. Will the treatment work? Will things deteriorate even more? In this world of transplant things can spiral out of control so quickly. It's not an exaggeration - it's happened to friends - we've lost friends unexpectedly and we have friends still, who are battling hard at this moment to overcome the fate that rejection can bring. Organ rejection is challenging in every way and is physically, mentally and emotionally gruelling. 

So January 2017 brought respite and relief for me just in that I knew I'd turned a corner in this battle - that I felt better and stronger was a good sign and this week after a visit to clinic, the signs are still looking positive. The routine tests showed that I'm now stable, that I've overcome this setback for now,  that I've beaten these rejection episodes. I'm still not totally through it. My lung function has declined by 25% now, but there's still a chance and hope it may improve now I'm stronger and able to exercise properly again. My medication has been altered yet again to help matters, increases in some, decreases in others to try and maintain the delicate balances needed to prevent infection and rejection flaring. I've been given a steroid inhaler too, to continue treating and preventing the airway rejection. There's still more clinics in the next weeks and months to check progress. I don't mind any of this, as I count myself lucky to have got this far - to have been able to hang on to some reasonable lung function and to feel well again. It's been the best Christmas present and best start to the new year I could have asked for. 

My new year resolutions aren't big ones. Just going through all this has enabled me to re-evaluate things yet again. My priorities are to keep on working hard on my health, recovery and becoming stronger again. If I can keep my health, then I can work on my other resolutions. Rob had just retired when I fell ill, suddenly he became my carer again. Now in a new year we are starting off again with our retirement plans. More time together, more memories to make. We're expecting a new grandchild, so helping Sarah and Oli and spending even more time with family will be a big priority.

Then I hope to continue working with our Transplant Group at the hospital with our support group and the other initiatives we've been involved with. We set up the support group to help patients going through transplant and its ups and downs. It's strange as the tables were turned in those few months before Christmas and members of the support group gave me so much support, which helped me through the difficult parts. It was much appreciated and made me realise even more how vital it is to have a support network of people who understand properly and can share their own experiences to help each other. 

I've also recently become an ambassador for Papworth Hospital Charity and plan to continue to promote my book 'Life is for the Living' to help raise awareness of PH and transplant and funds to help and support these causes. My last big priority and challenge for this year, is to complete my next book. I've been working on it for a while, but have been stopped in my tracks over the last few months. So I've restarted the work on it now, purposefully aiming to complete my first draft.

They are all goals that are closely related to my priorities, things that have been ongoing already, but with being poorly again made me realise they are things that will always be close to my heart. The things I find important that give me a good balance in life. Time for family and friends. Time for important causes that have affected my life and time for myself through my writing. 

Wishing everyone a very happy and healthy New Year. I hope you have lots to look forward to, new plans and memories to make and that you're still sticking to those New Year resolutions whatever they are. For those struggling with their health, I hope the new year brings hope, strength and the opportunity to feel better. 

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. 

Happy Times

Coming out of hospital and home is always a big step - it's a step in trying to recover, complete the drug regime and hope it works its magic. It's a chance to take stock - be away from the hospital and amongst ordinary routines to try and work out what you can still manage, so you can gauge where you are up to. An opportunity to challenge yourself a little, but keeping a balance of what's sensible for your health too. Most of all it's time to try and grab some special times with family and friends and enjoy some better moments in the middle of all the chaos. And this last few days has been all about that for me and my family - simply finding my feet again, catching myself up, accomplishing small daily challenges and trying to enjoy all there is to enjoy. 

There's been plenty to squeeze in and enjoy in between hospital visits over this last few weeks. Somehow or another all the hospital stays have managed to fall in between exciting events that are so important to us as a family. That's given me good opportunities to focus on positive things that are happening in our lives. Firstly, there was Sarah's graduation ceremony and I was so pleased to have managed that. The thought of being able to see my girls graduate was one of the things that kept me driven through all my long illness and transplant recovery. 

This week we had Rose's graduation to attend and celebrate. This I knew would be a real challenge as I'd only just come out of hospital after being treated for yet another bout of rejection, that coming straight after increased treatment for the first round of rejection and organised pneumonia has left me feeling very weak, shaky and exhausted. We started drawing up a plan A, plan B and plan C on how I might manage to still be part of it, as I was determined to still celebrate and enjoy this special time for us. It was going to be trickier compared to Sarah's graduation, as it was being held in Bournemouth, would be a bigger event and would involve travelling. 

In the end, we came up with a compromise to enable me to cope, but still be a part of Rose's special day. We decided that the actual ceremony would be too much to deal with. Firstly, there would be a lot of waiting around beforehand, followed by a few hours formalities, then photos and drinks receptions etc, which would be too much for me with how I am at the moment. Secondly, I'm so heavily immunosuppressed because of the rejection and there was going to be massive crowds of people, which isn't such a safe situation for me at the moment. The ceremony was an afternoon one too, so it meant I'd have to manage the whole day plus eating out afterwards somehow. To try and do it all would have been too difficult. 

So we decided to cut out the middle bit for me;  sometimes it's a needs must and making a few sensible adjustments means you can still enjoy everything and be part of it and not miss out on everything. 

We had a good journey down and had a lazy evening with TV and pizza in the apartment we'd rented - home from home and lovely family time. In the morning, Rob and Rose went off to the university to pick up Rose's gown. Then everyone got dressed up and ready and I was able to see her all gowned up and we went down to the gardens on the seafront to take some family pictures. Everyone then went off to the ceremony and this gave me a few hours to rest up and take my time to get ready to go out for the meal we'd planned for evening. All afternoon long, the family sent me photos and videos as each part of the event took place, so I could see everything going on and not miss out on the fun. 

In the evening we went out for a few hours for a lovely meal together and I had a wonderful time celebrating with everyone and it felt fantastic to be well enough to go and be out and about a little at last. It all felt a little surreal and very special to be sat eating in a lovely restaurant with my family, when only a few days earlier I'd been ticking off my breakfast, lunch and dinner charts back in hospital! 

The following morning we travelled back home a day earlier than planned, so I could have more chance to rest up before another lovely event with friends - Bernice's wedding to Scott. Bernice had a lung transplant three years ago and we became friends while we waited for our transplant calls. We had shared our journeys together and with other friends who were going through similar at the time. We've all remained good friends and Bernice's wedding was always going to be such a special event after all she has overcome and it's all thanks to our donors that we can celebrate such a wonderful milestone in Bernice's life together. 

All in all it's been a very special and uplifting week. Happy times! 

The 'R' Word

The 'R' word reared a few weeks ago now, when I was diagnosed as being in 'acute rejection' and just to complicate matters another diagnosis, that I had pseudomas colonising in both my lungs. It's believed that this has probably led from all the complications that followed the bout of CMV virus I had last Xmas. 

Last Xmas seems a long time ago now, well it's nearly a year this month that the CMV reared itself. The problem with a transplant patient is that with an infection or virus then a careful balance needs to be struck with the immunosupressant medication. If you are too over immunosuppressed then it's difficult to control the infection; if you become under immunosuppressed then there is the strong possibility that your body may reject the transplanted organs. 

When I had the CMV it was very severe, so my immunosuppression needed lowering to help combat it. After my CMV levels were back under control, it has since been a very delicate balance of controlling it so it would not reactivate and keeping the immunosuppression at the right level too in order to prevent rejection. I'd been having regular clinics and blood tests every month since, to keep a close eye on things, so I was lucky I happened to be at clinic and the rejection was found promptly. I shouldn't have been that shocked really that a rejection had happened, as that's one of the reasons they'd been monitoring me so closely. I thought I'd got away with it being nearly a year on from the infection.

The rejection was treated with high doses of IV methylpred steroids for three days and then with further oral steroids at reducing doses until I reached a suitable maintainance dose. To give you an idea of the increase I used to be on 5mg a day and the methylpred dose was 600mg. I also had to have another immunosuppression tablet doubled in dose. Pseudomas are a common thing in both pre and post lung transplant patients and can be without symptoms but when an infection or rejection episode occurs they can begin to colonise, start to inflame and even become infectious as they react, which is what had happened in my case and it was named as organising pneumonia. So I needed to be treated with a strong course of antibiotics too. And with all this happening, there was a fear of the CMV virus occurring again, so I had to be put back on the treatment for CMV too. All in all, a bit of a drug overload which in turn give their side effects on top of whatever else is happening, so some extra treatments for those too. Then it was a case of waiting a couple of weeks to see if the medication helped and whether the problems had been sorted, so add in a little anxiety on top and a lot of hope that this could all be turned around. 

I arrived back at clinic and had all the routine tests done and my X-rays looked like the organised pneumonia was improving, which was a big positive. However, there was no improvement in my lung function, which the consultants had expected looking at the x-ray. There was even a slight decline, so they acted swiftly again and squeezed in an emergency CT scan before going ahead with another bronchoscopy and biopsy. I was admitted back in hospital again and unfortunately the biopsy came back with the disappointing result that another type of 'rejection' was now occuring. This time a rarer thing with an acute rejection, which the consultant described to me as cells localising in a stream of rejection in the airways of my lungs. So it was back to square one again - back with the routine steroids treatment again, although I've just had it and been through all that. It was another three days of the high dose methylpredisolone in hospital to zap this second rejection and home again now on high oral doses to keep up the treatment. They will reduce down a little over the next few days, but they are going to be maintained at a higher level to help my lungs recover if possible or hopefully at least help them remain where they are at. 

It's a matter of waiting to see if this does the trick. There will be more biopsy results to come yet on the organised pneumonia front and discussion on the CT results amongst the team and I'm back at clinic in less than two weeks for another MOT, biopsy and bronchoscopy to see where we are at. I'm truly hoping and positive we can either turn this around at this point or hold things where they are at least. I'm also trying to be ready and prepared for whatever else may happen. 

In the meantime we have lots of very positive things happening too and this keeps me motivated to grab life and every moment it offers. It is Rose's graduation ceremony on Thursday. We are working on a plan A, plan B and plan C on enabling me to either attend or at least be part of it all somehow. It will depend on how well I am, but we will find a way or a compromise that will work and it's something to really look forward to. 

Rob also attended the Papworth Annual Patients' Event while I was in hospital and did a talk about what it's like to be a carer. Carers are often overlooked and they play such a vital role in all that we go through. I think it was a moving speech from what I've heard and I'm proud of him. He also did what was supposed to be my speech about our Transplant Patients' Representative Group that I chair and about the Transplant Support Group that our group have set up and got underway this year at Papworth. I was also supposed to be signing and selling my books there in aid of the support group and he successfully managed to sell quite a good few books for us too. It helped after the Director of Transplant Services and my transplant surgeon gave my book a big plug in his video. He's a person I'm forever grateful to for saving my life, but he continually supports us patients through our journeys, together with his marvellous team. 

After all that, Rob was back by my bedside just in time for my biopsy results. All in all, he's been a star and a rock not only supporting me, but ensuring all the comittments I'd taken on were organised and worked smoothly without me. I can't thank him enough, but I know the causes are as dear to him as they are to me. 

We've more activities planned with the John Henry Newman School in Stevenage and hope that these can still go ahead, as we hope to raise funds for the Papworth Hospital Charity, who are being very supportive and helping us with this. I'm looking forward to the Christmas concert there in December, where we will also be signing and selling books and giving talks with Papworth Hospital Charity about their work and raising awareness about Pulmonary Hypertension and organ donation through my book. The Papworth Hospital Charity are also supporting 'Life is for the Living' on their new and updated website, which is great news for us to help raise awareness and funds. 

There is also our Christmas Transplant Support Group meeting on the 26th November, which is all organised with books on sale there again. If you are a Papworth patient, please let me know if you'd like to come. The Papworth Ely Cathedral carol service is on December 17th, where the charity will have a stall with 'Life is for the Living' on sale too. The Papworth PH group have their Christmas party on Saturday, 12th November. I can't make this one as it clashes with returning from Rose's graduation, but they will have my book on sale there too, helping to raise much needed funds for their very special group. 

If you're going to any of these lovely events and fancy buying a copy of the book or picking up a copy or two for a Christmas pressie then there's your chance and you will be helping us to raise more awareness and funds for fantastic causes. Thanks to everyone who has already purchased it, we are hoping to pass selling a thousand copies by Christmas! 

It's also November and a busy month for promoting awareness of PH - watch out for another blog post soon about all this coming up next... there's a lot happening! 

We also have our lovely friends, Bernice and Scott's wedding evening reception next weekend. Now this is a truly special wedding, as like myself, Bernice received her gift of new life and transplant three years ago. We shared our journeys together and she's gone on to have the most wonderful new life and is living her dreams. Her journey has been an amazing one to watch and it's all thanks to our donors and their families that we can celebrate these special moments. I'm so looking forward to it and meeting up with everyone.

And then there is Sarah's Baby Shower party and Christmas... so there isn't really much time for dwelling on 'what ifs',  just so much to enjoy and be busy with and for living in the moment. The rest will unfold and slot in with whatever we are doing. We will just have to squeeze it in and whatever happens will fit in with us somehow. 

Thanks for reading if you made it this far and haven't fallen asleep, I know it was a long one with so much happening! 

What a Difference a Day Makes

Sailing through October and I've been steadily embarking on the first few weeks of my fourth year post transplant. I'd been feeling fighting fit - well very fit. I'd just arrived back from a holiday in Whitstable, where we've walked miles every day in the fresh sea air and autumn sunshine. It'd been a whirl of wonderful times - I was cycling around a park in the middle of the Danube River in Budapest only the week before, laughing, happy and carefree.

What happened? I'm in shock more than anything. I try and trace things back a little. Why did I not spot the signs? Should I have worried when I didn't? 

One of the things about being a transplant patient is that you have to monitor yourself and note down daily observations. It can become a little tiresome over time doing this everyday as the years go by. I know some people give up on it, knowing they know their bodies well enough if something is amiss. I feel a little like doing this at times, so admittedly I don't managed to keep up every day, but I do ensure I take a run of recordings every week. I take just enough to check in each week, reassure myself of what is my normal - it's that standard to look back on if things don't feel right. It gives me evidence for the doctors. I can sit and tell a GP, 'But my temperature's elevated at 37 - it's been 36.4 for three years 

every day until now!' I make the effort to try and do it, as it makes sense that you may spot something untoward happening. My observations had all been fine - an odd statistic now and again - maybe a random temperature of 37, but no steady pattern; maybe an odd low lung function test, but I'm not the greatest with lung function technique. There were no observations throwing up alarming signals. 

I always have a cough. I have had the cough since my transplant. It stems from a join that healed in a funny way after my operation, it causes me to have to clear my lungs each day. I might have said a few times on our walks recently that I feel like I'm coughing a little more. But the air has gone suddenly colder, there'd been a cold wind blowing and I put it down to that, especially when I'd been walking along a chilly seafront early in the morning during normal prime coughing time. I can't really put a finger on it that it was getting worse, perhaps just marginally worse as I've felt the need to mention it. And then I recall mentioning an odd moment of breathlessness once of twice - clambering up a steep slope from the sea front to the flat terraces above with the wind in my face. Rob says, 'I'm breathless too, if you hadn't stopped for a minute, then I would have.' Similar thing again, this time being pulled up a hill by Ted at Wimpole Hall two days before my clinic appointment. I'd stopped and caught my breath, there had been a cold wind and I was a bit tired after already walking a good few miles. Nothing to worry, I put it out of my mind as soon as it's flashed into it. 

After Wimpole I'd woken in the night. I've kept having a tingle in my neck that shoots up my face to my ear. This night it's aching and feels stronger than normal, like my glands are swollen up or something. It's been doing this on and off from summer, but this feels more. Much worse. 'Should I phone for an appointment with the GP?' 'Will they just stand and stare at me?' 'What's is she on about - a tingle in her face?' 'Should I phone clinic?' 'But I'm there in another day,' I think. I decided to wait and see, if it becomes worse I'd phone the GP in the morning. It disappears and goes. Worry sorted. I might mention it at clinic, but then I don't want to seem like I'm a paronoid, self-obsessed transplant patient, so I might not. 

I jump in the car to go to clinic. I feel strong and well. Healthy. I say to Rob, 'I don't think I'll mention any of these silly little things. What will they say? Well they'll probably laugh at the tingling face bit; they'll probably say of course you might be a bit breathless climbing up steep hills with a dog pulling you on the lead with a cold wind on your face!' 

I've already mentioned to them about feeling fatigued and having to pace myself more, we've already discussed this at clinics and put it down to all the problems and ups and down that have gone on during the year following the serious attack of CMV virus at Christmas and all the medication tweaks that have come with it over the year. That's been an ongoing and continuous issue to keep the CMV virus at bay and having to pace myself and becoming fatigued was part of the course.

I felt breathless walking up the incline leading to clinic with a friend. Arriving in clinic I needed to sit down straight away. I'd no breath left. I sit there and think, 'Did that really happen? Did I actually lose my breath? Did I have no control on my breathing?' I recovered myself, sat and chatted with friends, had my tests done, felt fine. I think to myself, 'I'll just mention all things niggling things after all. I don't like what happened earlier.'

I see the consultant and we chat about how I am - I'm a bit reserved at first about the mismatch of what feels like 'nothings' going on. He turns and points to my lung X- ray. They are there, as always, my new lungs staring down from the computer screen and he tells me he's noticed some marked differences since my last X-ray. Things he's concerned about. I rattle off all those little nuances and nothings. I listen in surprise as I'm told I'm being admitted into hospital immediately and tests will be done straight away. It's all a shock - the swiftness of how this is all moving. 

Five days and numerous tests later, I return home a completely different person. I'd climbed in the car on Thursday morning thinking of myself as fighting fit and perhaps needing a little reassurance like all us transplant patients do when we visit clinic. I returned back home with the dreaded diagnosis of that 'R' word hanging over me. Rejection in my beautiful borrowed lungs. The 'R' word. And not only that, but there's another problem diagnosed in both lungs too, which needs specific treatment. Basically I'm not what I thought. 

So here I am home and we're catching our breath as a family. It's a wait and see the response to new medications. It's a wait and see the response to generously increased medications. It's a wait and see response to high doses of steroids. While I wait, I go back to those old tricks of recovery - things I do each day really anyway, but during times like this they come with a new intensity. They're tried and tested and with a fair wind can help work alongside the medications. Rest. Recuperation. Good diet. Excercise - well at least moving around within my limits as they are at the moment. Keeping the mind busy. Focus and resolve to fight, survive and overcome.  

Most of all, it's small positive steps, just one at a time each day to face whatever is happening on that particular day, be it for better or worse. It's better to tackle those than worry about the 'what ifs' that may never happen anyway. Just little steps. Little daily tasks. Small and positive accomplishments as we wait and see what unfolds next. 

The big positive at the moment is there is still hope - much of it - that things may be better again, even though I've been advised it's all going to take time whichever way things swing - they still might be better again if I am lucky.

What a difference a day makes. Fortunately for me it was a day when I just happened to be in the right place at the right time and fortunately the problems as they are forseen are being treated for now. I'm thankful for that, hopeful for this coming year still and always grateful for the extra wonderful years and time that I've been blessed with already.