Saturday, 29 October 2016
It's always good to make plans and have things to look forward to and as a family we'd been making preparations to celebrate both Sarah and Rose's graduations this autumn. Yes, somehow, both girls have finished their studies at the same time. Obviously these events were always going to be very important to me - seeing the girls graduate was always going to be special, as I simply believed at some points when I was very sick that it would be something I wouldn't ever get to see. Those milestones become very significant when you fear that you may never reach them. They can give you the motivation, hope and drive to keep on overcoming the odds.
Sarah and Rose both started their studies during that long period of my illness and fight with Pulmonary Hypertension and during my transpant and recovery. Then over the years following my transplant, I've been able to see them both make their own direction in life, complete the studies they'd undertaken and grow in confidence and embark on new things. Being able to experience this and time with my family is the most wonderful part of having my transplant.
It feels like their graduation celebrations are a culmination of all the things we've been through together and successfully overcome - like they are celebrations about moving on and moving forward in life. This week, it was Sarah's graduation and although I'm not quite feeling my best at the moment, I was more than determined that we would carry on with the plans we'd made and that I'd go and see Sarah graduate. It felt too important to miss out on; it was one of those things that I always said I'd love to see when I was waiting for my transplant.
We had a lovely time and a wonderful morning at the ceremony and of course we were very proud parents amongst many other proud families enjoying moments with their loved ones. These moments are so precious. Sarah graduated with the Open University. She had worked full time while she undertook her diploma. Her next step is going to be motherhood, something completely different. For me, that means being a grandma - something I hadn't dared to hope for. We all have new adventures on the horizon, new experiences and new things to learn and do.
One of the lovely things at the ceremony was that there were people of all different ages celebrating their achievements with their families. There were young people and then people who were in their seventies who were graduating. It was very inspiring and a reminder that we are never too old to learn and embark on new things.
My next priority is to keep well enough to go to Rose's graduation, which is coming up soon. Until then it's plenty of rest, recuperation and hopefully feeling better.
Tuesday, 18 October 2016
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.
Saturday, 15 October 2016
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.
Friday, 7 October 2016
Retirement. It's what many of us eventually strive towards, once we've reached all those career orientated goals and are beginning to think it's time to spend time on ourselves more, do those things that we may have always wanted to do, but can't ever fit in between our busy work lives and other commitments. It's something we may think of when our children have flown the nest and are happily established in their own adult lives and we can relax and let go a little.
The retirement situation has been a little different for Rob and me, but yes, Rob has now finally retired from work. This is after quite a bit of stopping work and then starting again because of my ill health over the years and that's how things have been a little different. Of course, we tried to make the most of all the time he's taken off work, but during those years our time has been peppered with some extreme health issues. It's been a series of high highs and low lows. A rollercoaster until I received my transplant and transplant still does not come without its ups and downs and trials and tribulations. Having transplanted heart and lungs is a condition that needs to be permanently managed and does usually come with a shortened life expectancy. We are forever aware of this.
We decided at the last minute to go on a city break to Budapest to celebrate Rob's retirement. We had a few reasons for deciding to do this, obviously his retirement being a big factor and being yet another excuse to celebrate, as life is so precious nowadays and we don't need much excuse. It's a case of when the going is good, try and reach for the stars while you can and while they're there in front of you.
I don't think Rob was that bothered about travelling abroad though, when I first mentioned that maybe we should do something special to celebrate his retirement. We'd been very fortunate and enjoyed a few lovely weekend breaks and holidays in England this year. We've had so much beautiful weather too, which seemed to be continuing on and on.
I felt quite strongly we should mark it with something special though, as Rob was forced to quit his career when I fell poorly and became my carer almost overnight following my diagnosis of Pulmonary Arterial Hypertension (PAH). I literally had to walk out of my career too. There were no 'leaving', 'retirement' or 'moving on' celebrations, the usual get togethers with colleagues for a farewell drink or meal, we merely walked out on our usual routines and daily lives and careered head on into a battle for survival, uncertainties and the unknown.
On retrospect, we couldn't ever halt or change how things happened and the course of what was to come and I've managed to survive and have improved health so that's all that matters for us both. I've always felt guilty and saddened that Rob had to give up so much to live with an uncertain future and I was pleased he'd been able to return to work since my transplant, albeit being part time and contract work, which suited our situation. I felt it was good for him to have his work, the opportunity to be in the real world and not always being in what has become our other world of hospital and transplantation.
This time around Rob has decided for himself to retire and I'm delighted he's been able to have this opportunity without it being forced upon him; that he's been able to make his own deliberate choice. It feels like the more normal and planned for retirement I think he always deserved. That's the main reason I felt his retirement should be marked somehow; to make some sort of stance that we got there in the end; that we've both reached retirement together although we went a long way round to achieve it.
It's been a lovely time for Rob during his last few days at work, enjoying celebrations with his colleagues and being able to leave in what has been a more usual manner. I've felt so pleased, after all the years of him struggling with work on and off because of my needs, that his working life has eventually finished on more of a high and more how he would have planned and dreamed of before I ever fell ill.
Another reason why I wanted to travel abroad again was because of my health. It's been a year since we travelled abroad and I know that I've been really fortunate to be able to do lots of travelling since my transplant and especially visiting several countries abroad during my second year post transplant. My health has been more challenging this year though.
It started with a difficult bout of CMV virus last November, which resulted in being hospitalised for weeks and over Christmas, being unwell for a few months and has been what seems an ongoing battle to keep it under control, prevent it reactivating and dealing with the resulting havoc it has caused ever since. This manifests itself with stomach and colon inflammation and ulceration and the associated pain and severe fatigue. I've worked hard to try and overcome this with diet, exercise and pacing myself more. My transplant team have also been more than helpful and are still monitoring me very closely and regularly, adjusting my medications so things are kept in good control. I'm still having monthly CMV tests and clinics more regularly than I had been, which I'm happy about, as it gives me the reassurances I need.
I'd had to cancel quite a lot of things we'd been looking forward to during some of these difficult periods, so I could recharge myself, help myself better and get myself back to the good health I'd been enjoying since my transplant. Regaining my health was the most important thing, so it didn't matter so much to have to cancel in the scheme of things. It's always good to plan things to look forward to, but if things don't go as planned, it really doesn't matter. We accept this happening as part of our lives now. Attempting to go abroad again though, felt like it would be a big step. A step that would be a small victory against all this year's health problems and show myself I can overcome them and still make the most of everything life offers when the going is good.
We love city breaks and seeing new cultures and places and this time we chose Budapest - we've drawn ourselves up another list of cities and places we'd like to see and this was a favourite. We managed to have a wonderful time, exploring yet another new place, seeing new sights, enjoying more beautiful sunshine, having fun and celebrating retirement and life. It was another chance to live life to its fullest before we reached the end of my third year post transplant and it always goes without saying, all thanks to my donor.
Of course, we don't take this period of 'retirement' for granted. Reaching this stage in life is an enormous bonus, it's something many people don't have the chance to have, so I see growing a little older as a complete priviledge not something we should moan about. I often laugh how the government keep changing the state pension ages - I know it's not a laughing matter really. State pensions are becoming ridiculously out of reach for the healthiest of people. Everyone worries about how they will manage, but I know if I'm ever lucky enough to reach the sixty seven years it is currently, then it will be a nice problem for me to have. In the meantime, Rob and I plan to keep ourselves busy with things that mean the most to us and keep on enjoying life to the full.