Friday, 28 November 2014
After being told at clinic no blood tests for six weeks and no clinic for three months, I found myself back at Papworth having blood tests again on Friday! When my blood tests came through after clinic, my white blood cells had jumped from being too low to too high! So I had to be put straight back on to the Myfenax once more, not on the suggested lower dose we discussed, but back on my old dose. So the saga of the Myfenax continues on, with more blood tests now booked to keep an eye on things.
One of my blood tests is due on Christmas Day and I told the GP's receptionist that even if they are open, I definitely won't be going for it! We had a laugh - I'm fed up with the Myfenax now - so I'm trying to laugh about it. I do know it is nothing to be bothered about really, compared to what I've already been through and what others have to go through.
We went straight from Papworth to visit family in Lancashire. It was great to catch up with my mum and sister and my sister's family and stop over for a few days. We then drove up to the Lake District.
We decided to go for a walk on Sunday, it was a very bright sunny day, not one you'd expect for November. There are so many places to visit, it is always hard to decide where to go, but we went to Gummer's How on the south eastern side of Windermere. It's a place we've been with our girls before and as you climb the hill, there are fabulous views.
The views stretch out across the Coniston Fells, Central Fells and over Lake Windermere and beyond Newby Bridge. From some areas you can see right across to Morecambe Bay even. It was a perfect day to take in the views.
The walk starts from a Forestry Commission car park just across from the hill, which is 321 metres above sea level and is only about a mile and a half. Gummer's How is one of the highest foothills in the area though, so I'd forgotten how steep it gets - well for a person with transplanted heart and lungs, particulary the lungs - very steep. So a short walk, but a bit of a challenge for me!
As we walked the first part through a field and some woodland, the path was just a gentle incline and the views across Windermere were stunning in the sunlight.
Then came the first leg of the steeper bit...
I managed it though and made it to the next part...
More stunning views appeared, but it was time for a little rest for me as I was getting a bit breathless. We then went on and on and on ... up higher and higher...
I managed to get to the top of these craggy steps, but then I couldn't make the last bit up to the summit. My new lungs were all puffed out and I'd got myself too breathless. It was time to stop and get my breath back, which took a while and I was a bit disappointed in myself. Rob carried on to the top, but I stayed put as I thought I'd pushed myself enough. I didn't like the idea of having to try and get medical help stuck up on a hillside; however, I do like to try and push myself just to see what I'm capable of now!
While I enjoyed the views, I changed my mind about being disappointed. I thought of where I have come from over the last few years and how before my transplant I would have struggled just walking up the incline on the road from the car park to the gate to the field and realised just how far I had now come, managing to clamber up most of that hillside. I know I'm lucky I managed to get that far and decided I would be proud of that, rather than beat myself up for not getting to the very top.
This is the view of Gummer's How from the edge of Lake Windermere: when I see this I can see I managed quite a lot really!
Wainwright, the renowned Lake District fell walker, said if you fail to reach the summit then it's time to invest in a pipe and a pair of slippers rather than walking boots. Well I say I did pretty damn good in the circumstances and my walking boots still have a very long way to walk yet! But, yes, I do like my slippers too now and again!
After our little bit of hill climbing, we went down to Lake Windermere, to Fell Foot Park, where we watched the last of the autumn sunshine disappear over the lake and go down behind the moutains.
Then it was time to get warm and have a well earned cuppa at the Swan Inn at Newby Bridge and drive on to the Strickland Arms for an early Sunday roast dinner. Pretty much a perfect day and as usual there was someone we were thinking of, someone always with me, my donor, who has given me yet another beautiful memory.
Sunday, 2 November 2014
It's been another busy week. We enjoyed a few days in London following the Woman and Home's Seize the Day event and we managed to pack in a lot as the weather was fantastic and was lovely and sunny.
Thursday we visited the Royal Exchange in the City for a coffee and had a little explore around some of the streets where I used to work over twenty years ago when I worked for a bank. It felt like a little trip down memory lane! We had a wander up to St Paul's cathedral too, which always look stunning then we spent the afternoon catching up with some good friends who we hadn't seen for ages. We had a lot to catch up on and lots more reminiscing, this time way back to younger days when we all used to work together for the bank in Blackburn in Lancashire.
Friday was like a summer's day and we visited the very moving poppy display at the Tower of London and then walked across Tower Bridge to Shad Thames. Shad Thames was yet another place where I did a bit of reminiscing too. We stayed here once for the weekend as a special treat when I graduated from university just over eleven years or so ago, so we had a wander around the shops and had some lunch there. Then we did quite a long walk by the riverside back up to Westminster Bridge and just enjoyed the atmosphere and sights - Tower Bridge, HMS Belfast, the Globe Theatre, Borough Market, the Golden Hinde to name but a few. We reckoned all in all we must have walked seven or eight miles. Now that would have been totally unheard of before my transplant!
We got back from London and then did a quick turn around to Suffolk, as we were going to Bernice's party. Bernice is one of my 'transplant' friends and she was holding her party for the charity 'Live life, give life', which is a charity that helps to raise awareness of organ donation. We had a great time catching up with Bernice and her family once more and a really lovely evening.
We also got to catch up with our dear friend Stacie, who, after three false alarms is still waiting for her heart and double lung transplant. She has been waiting over two and a half years now, I can't imagine how hard that must be, two years was hard enough. She is always bright and cheerful though and is so brave. We are all hoping and hoping that her call will come soon. Stacie was with her twin sister Megan, who we have met once before and it was really lovely to see her again too.
Both Stacie and Bernice have blogs too, take a look below, they are listed below under 'blogs I'm following'.
We were also lucky to meet Emily and her husband David, Laura and Sally and her husband Steve. Emily, Laura and Sally all had transplants around the same time as Bernice, so it was lovely to chat to other transplant patients. Between us there were four pairs of transplanted lungs and two transplanted hearts - how totally amazing is that?
We won the auction for the 'Skulfie' cake too, so we have been a bit naughty on the 'eating cake' front this week - even worse than usual! Bernice's mum bakes the most fabulous cakes!
The rest of the week was fairly quiet, thank goodness I needed a rest after all that! We had a lazy Sunday and family dinner including our new addition - Sarah and Oli's little cocker spaniel puppy, Alfie. I like the dark nights when the clocks first go back and cosy Sunday evening dinner!
It has been one of those weeks for catching up on jobs - we've had builders fixing things and cars being fixed and a lot of that humdrum stuff. Wednesday was bonfire night and I had been keen to go and see some fireworks, but then Rob read in the paper that the weather conditions were ripe to cause toxic air conditions and it may be difficult for people with lung conditions. I still struggle a bit with my breathing if the air is smoky or something smells too strong so I thought better of it and decided I would give it a miss.
Health wise I only had one blood test to have done. I went to the doctors all ready for my weekly telling off, but this week I got a different lady. There wasn't a word said about my paperwork, the lady was smiling and helpful and it was a very nice experience - well except for the 'sharp scratch' as they always say! The only other bits health wise were picking up monthly drugs from the pharmacy and arranging and taking delivery of my immunsuppressants that come from a health care company now. So all very quiet on the health front this week thank goodness.
In between everything else going on I've been busy on my book that I'm writing and I've just finished part one - well the first draft of part one at least! It is going to take time, but a little milestone has been reached now, just two more parts to go and I won't be far off!
On Wednesday I attended Woman and Home's 'It's your moment ...seize the day' event as one of the panellists. I was asked to do this following winning their competition, which was in association with Tena Lady, earlier in the year. For the competition, I wrote about my illness and overcoming my heart and double lung transplant and why life is so precious and how you need to make the most of every moment. I was lucky enough to win a makeover and fashion shoot as part of my prize and the magazine featured an article about me in their September issue.
Wednesday's event was all about inspiring readers who have their own aspirations to make some change in their lives, by sharing our real life stories. It was held at Woman and Home's offices at the Blue Fin Building in Southwark, London, where I got to meet Woman and Home staff and representatives from Tena Lady, who were sponsoring the event.
The panel included Sherrie Hewson, who was our chairwoman and is well known for her roles in Loose Women and Benidorm; Kathleen Mcgrath, who is Tena Lady's sleep expert and runs the charity 'Medical Advisory Service', which has a 24 hour insomnia helpline; Linda Bartlett, who like myself is a Woman and Home reader - Linda overcame a serious back injury and went on to complete the three cities cycle ride from London to Amsterdam and Carole Ann Rice, who is a successful life coach and columnist.
The event started with introductions from Woman and Home's editor, Sue James and we listened to a very inspirational woman, Dee Caffari, who has sailed around the world single handedly several times and in both directions. We then had a 'Loose Women' type discussion where we had opportunies to tell our own stories and give tips on making changes in life. After some panel discussions, we had a lively question and answer session with the audience.
Afterwards there was a drinks reception - with plenty of prosecco and nibbles - and a chance to circulate and chat to all the Woman and Home readers who had come to the event. It was a fantastic evening and I hope everyone enjoyed it as much as I did. It was a great chance to tell my story about overcoming PH and transplant.
I think this event made me focus on how I'd got through the last few years. So what are my tips for making a change in life? The focus of my story at the event was really about adapting to a 'forced' change in life and what things I had done to achieve this and get through. I started with my number one strategy - positivity. I decided I needed to accept what I couldn't change and focus on what I could. It helped me to focus on what I could do and not dwell on what I couldn't anymore.
Positivity has got me a very long way and is still helping me as a go along on my transplant journey. I have learned over this last few years to try and turn a negative situation around. For instance I was totally devastated when I couldn't work as a teacher any more, but then thought of all those times when I was too busy teaching and wished I had more time to pursue my hobbies: reading, writing, enjoying my garden and travelling. Of course some of these had to be done within my new limits, but I could still do them. I took up some new hobbies too: blogging, social media and photography.
I armed myself with information: in those early days of diagnosis, I felt bewildered and lost about this rare disease, pulmonary hypertension and why I had it. I needed to find out more about why I might have got it, more about the treatments available and what I might face. I was glad I did, when it came to needing IV medication and being told I needed a transplant, at least I knew already it may come to that - I was shocked, but it softened the blow a tiny bit having a better understanding of things. I think information is key when making any change big or small.
Another thing I did was build a network of support from other patients who's lives had been touched by either PH or transplant. I didn't know anyone who had PH, no one around me understood it, even medical staff who dealt with me in the beginning didn't. Talking to others who were going through similar things was the best thing I ever did, you do not ever find yourself sitting in the local doctor's surgery chatting to someone else who has had PH or a heart and lung transplant and it can be so isolating at times.
The support from my PH friends and transplant friends leaves me feeling much less isolated and I have made some lifelong friends. I now have not only my own family, but my PH family and transplant family too. When the 'chips' have been down, the strength and support that comes from my fellow patients is just incredible and still is. So I would say talking to others who are going through the same as you will take you a long, long way.
I'd like to thank everyone at Woman and Home and Tena Lady for inviting me to the 'Seize the Day' event and for such a wonderful opportunity to meet some inspirational women and chat to other readers about their aspirations for the future. I'm now fully fired up to get my book completed and published!
Taking opportunities that come your way is another positive step in the right direction. I will always remember my dear friend Ann, who has sadly now passed away, asking if I'd speak about waiting on the transplant list at the House of Commons. I thought I wasn't confident enough and really wasn't well enough to be trekking into London to do it, but then I decided, 'yes, why not?' I went ahead and did it, it then led to more media interest with press, radio and TV interviews. By default it gave me a new direction and purpose in life, which continues on: trying to raise awareness of PH and transplant. So I believe positivity does breed positivity and can lead you on to doing all sorts of things you never imagined you would do!
Taking things step by step, sometimes one small step at a time and on bad days just a tiptoe if possible, always takes you in the right direction towards your dreams and hopes. Sometimes it feels like 'ten steps back and one step forward', but every step in the right direction is a positive one.
Finally 'hope', this one carried me a long, long, long way. If you have hope, then you still have dreams and dreams can come true if you let them and find a way!