Sunday, 27 July 2014

A Weekend of More 'Firsts'

A few months ago we had planned a couple of visits to the Lake District in July, but because of a few problems I've had over this last month or so and lots of extra hospital visits we had to cancel our plans. This last week has been much steadier and for once we had a quiet weekend and a hospital free week coming up. So, as a last minute thought, we decided we would just drive up to the Lake District and try and catch up on a few of those plans we had been making. 

It ended up being a weekend of a few small 'firsts' since my transplant. It started with the travel plans. Over the last four years or so I've been too ill to set off really early in the morning like we used to do. It is a long journey from here and whatever route we take, it is always extremely busy and slow with traffic as I could not manage to set off too early any more. It used to be a much quicker and better journey to set off really early. So now feeling well enough, a small stepping stone for me this weekend was just to get ourselves ready the night before like we always used to and get away on our journey by six in the morning. This was much better, I managed it well and we arrived in Cumbria nice and early. 

We managed to pack a lot into our long weekend. We had an afternoon out by Rydal Water and I managed a good walk for a few miles by the river and up to the edge of Grasmere. We had a look around one of Wordsworth's houses, Dove Cottage and did a bit of shopping in Ambleside.

We took a picnic to Coniston Water and the weather was gorgeous. Now I had been planning this outing in particular for a long time. We always used to go swimming and kayaking here before I was ill. 

I have been working hard on my exercises so I could get back in my kayak once more and kayak across Coniston Water. It has been one of my driving forces in trying to get fitter. I've been trying to do yoga daily and when I felt ready I introduced exercises such as rowing squats to strengthen my muscles so I would be able to kayak. The hard work paid off and I was able to go out on the water in my kayak and probably kayak better than I could before! I feel I had waited for this moment for a long time and it was a very special one when it happened. Of course there was just one person who I thought of when I looked down at that view once more from the middle of the lake. It is something I thought I would never do again and I cannot thank my donor and their family enough for giving me the chance to do this once more. 

Another first was just the very basic fact that I could now wear a swim suit again. Having had an IV drug going via a catheter and pump into my chest 24/7 for three years, I didn't really feel very comfortable wearing swimwear. I can now wear it again with confidence, which is another fantastic feeling. It was a boiling hot day and just perfect for a dip to cool off, well here was another little event happening, but a big one or me, my first swim post transplant and my first swim for four and a half years. What a simple pleasure and I was in one of the most beautiful places to try it out. If I could have bottled up that afternoon I would! 

We also spent time up on Silecroft beach, which is quite a remote area near the Western District. It is a very quiet place, which has miles of sandy and shingly beach. There are often horse riders and kite surfers down there and you can paddle and walk for miles. I just had a paddle, I wasn't sure about the sea water with my new lungs, it didn't look so clear. Rob cooked a lovely dinner on the beach and we sat and watched the sun going lower and lower. 

We then went to visit my mum in Lancashire, it felt ages since we saw her last because we had had to keep cancelling. She cooked us a lovely lunch and we spent a good few hours with her. Next time we are hoping to stay with her for a few days. 

Then it was back home again, feeling very chuffed with all I'd  managed and our last little treat was a visit to Sarah and Oli on our way back. If you have been following the story of Isla, Sarah and Oli's cat that was cruelly shot a few weeks ago, you will be pleased to know they've got a new kitten called Tilly, who has now joined Indie and Freddie, the other cats, and is helping to fill that little gap left behind 
by Isla. 

All in all, it was a very special and memorable weekend. 

Wednesday, 23 July 2014

Hospitals and Writing

It is twelve months this week since we lost our very dear friend Ann, who bravely fought a hard battle against very severe PH and sadly did not survive after her first few months post heart and lung transplant. We often talk about Ann and remember her with much fondness. She was such an inspirational character to us and still is. We are thinking of Anne's family and friends this week and know how difficult it will be for them. She will always be in our hearts and never forgotten. 

I was supposed to have my tests at transplant clinic this week, but they have been postponed for a few weeks. It worries me about whether my blood levels will be all right after all the stopping and starting of my medication over this last month, so I was almost looking forward to having my blood tests so I can be told all is nice and settled again. I feel fine at the moment though and back to normal again so I must learn not to worry I suppose and I know I am back at clinic in a few weeks time. 

We still weren't hospital free though. This week it was Mr Graham's turn as he had to have some routine checks, which he has every five years. We were back at the QE2 in Welwyn Garden City for the third time in a week and I'm pleased to say that all the tests were all fine. I think he rather enjoyed being the patient for once and getting all the fuss. It must be so wearing keep going to hospital all the time with me. He has to do all the sitting about usually, at least I'm up and down doing things or having things done, but he just has to sit about and wait and I think it must get so boring for him now after all this time. Next week we are hoping will be hospital and doctor free, we haven't had one of these weeks since May, so I'm keeping fingers crossed. 

I had some good news the other day too. I sent an article I had written to 'Cumbria' magazine and they emailed me back more or less straight away to say they would be able to publish it for me. It is going to be in their November issue - yes I'm finding out that all the magazines have to work a few months ahead of themselves.  My article is all about Cumbria being an inspiration to me to get myself better after my transplant, so I'm delighted they are going to publish it. It will be yet another audience to reach. I always think the more people we can reach with our real life stories about transplant, the better and hopefully there may be some positive impact. 

I treated myself to a new mac book recently so I've now made a good start on the book I'm writing about my transplant. Having the laptop means I can write wherever takes my fancy and get my thoughts down when they pop in my head! I always forget my ideas if I wait until later. It's going to take time, but now I've actually made those initial steps to get going with it I know I will need to finish it! That's my big project and it feels like quite a challenge. My writing course is also keeping me busy and getting me thinking of other writing ideas too. 

So after having to give up work and worrying what I might do with myself once I'd had my transplant and got better, I'm finding more than enough to keep me busy and enjoying myself with it in to the bargain! 

Wednesday, 16 July 2014

Ups and Downs

We had a lovely morning at Papworth to mark National Transplant Week on Friday and from there we drove on to Rutland, where we were staying for the weekend so we could go to a family wedding. Rob's nephew, Tom, was getting married. We had been really looking forward to this and both the girls were supposed to be driving up to join us that evening for the weekend.

We received a phone call from Sarah just as we left Papworth and she and Rose were unable to join us that night because they had found Sarah's cat, Isla, badly injured in the street. Oli rushed her to the vet, who discovered that she had been shot in the stomach. The vet tried everything to stabilise her through the night and Sarah and Rose planned to join us in the morning instead when they had better news. 

Things didn't go well and Sarah and Rose had to rush Isla to the animal hospital on Saturday morning, where sadly she died. It was a very distressing time and even more so because of how she had died. Sarah and Oli have warned all their neighbours, especially those with young children and pets that there is someone in the vicinity randomly using fire arms and the RSPCA and police are investigating, so they have tried to be positive and do what they can to prevent it happening to someone else. 

Normanton Church
Tom and Fiona

In the end, although really upset, Sarah and Rose managed to join us for the wedding and we had a really lovely time despite what had happpened. It helped take Sarah's mind off things for a while.  It was a really uplifting afternoon, the weather was beautiful and the ceremony took place at Normanton Church Museum on Rutland Water. It was a stunning setting and many of the guests arrived by boat. We then went on to celebrate at the reception, which was held in a large marquee nearby and we really enjoyed ourselves. 

Rob and I stayed over for another night and on the way back while we were in Rutland, we visited Barnsdale Gardens, which is where Geoff Hamilton used to film Gardener's World. The gardens were looking stunning with lots of plants in full bloom and we had a lovely morning out and lunch before we headed back home.

Once the weekend was over, it was back to hospital visits for some of the post transplant problems I seem to be accumulating. I will emphasise here that these are part and parcel of transplant life and just need to be dealt with and sorted. Whatever problems they are - some serious, some less so - my new heart and lungs are working really well and my quality of life is fantastic compared to what I'd lived with pre transplant, so that is what I always hold on to when it starts to feel a bit tough. It can feel hard when you are always going up and down to hospitals and sitting about in one waiting room after another, but I only have to recall where I have come from to where I am now and I know I how lucky and blessed I am.

Monday was back to hospital again, this time to the QE2 in Welwyn Garden City, yet another hospital. I haven't been in this one for any treatment since I had Sarah and Rose. They were both born here. I was meeting the surgeon for one of my forthcoming operations, so he could give the options I have and then I can discuss it with the transplant team when I see them next week. It would have gone fine, but they forgot to get my notes and I had to wait what felt like hours on end while they got them sent over. I have to go back to see the surgeon in September when I will have spoken with the transplant team and then I have to have more tests and they will decide the way forward. In the meantime I've been referred to a physiotherapist for treatment, so I will have to go back to the Lister Hospital for this. 

Tuesday morning and it was back for another visit to the QE2 yet again, this time to see a consultant I'd been referred to about problems with my mouth, caused by having no immune system. The consultant was really helpful and gave me some good advice. They told me I can phone them up straight away if things deteriorate again, so I now have some proper support in place and won't have to be up and down to emergency GPs, out of hours doctors and hospitals like I had to over the last few weeks. That feels such a relief as it is stressful being passed around from pillar to post when you are in a lot of pain and no one really knows what to do with you. I have to go back for another check up in a few weeks time. 

So life is still a roller coaster: sometimes it's just ordinary life with its ups and downs and sometimes it's what I call my transplant life. I am forever conscious though that I still have my life and that I can still ride life's ups and downs whatever they are. 

Thursday, 10 July 2014

A Successful National Transplant Week

I think this year's National Transplant Week has been a great success. There have been stories and news about organ donation and transplant in the papers, on the radio and on the television all week long. Hopefully they will help to raise awareness of all the issues regarding transplant and organ donation and get people thinking about it and discussing it with their families.

I think the the theme of 'spellitout' has been a really good one and believe campaigns like this are so important so people can make their own informed decisions on whether organ donation is for them or not. It is probably unlikely for families to find themselves in a position where they will need to decide whether or not to donate a loved one's organs. At least if they have had a discussion about it, then they will feel more able to make a decision on what they feel is the right thing to do for their loved one and for them as a family should they ever find themselves facing this agonising dilemma. 

It was great to take part in such an important campaign and fantastic to see how the whole 'transplant' community rallied together including donor families, transplant recipients, NHSBT and transplant hospitals. We also have to thank the press, radio and TV for so actively supporting us and my special thanks go to BBC 3 Counties Radio and the 'Weekly News' newspaper for giving me the chance to play my part. 

We finished off the week by celebrating at a special event at Papworth Hospital held especially for National Transplant Week. For me it was a celebration of having been lucky enough to receive my transplant and getting the most precious gift of my new heart and lungs. For the last two years I've attended the event as a patient on the transplant list. Last year I said to one of the nurses, who had organised the event, that I would really like it if I could come back next year having had my transplant. Well I got my wish and my dream come true thanks to my wonderful selfless donor and her generous family. 

My donor is forever part of me on my journey through life now. I've listened to several 'donor' families speak about their decision to donate this week and it has felt both heart warming and humbling to hear them talk of the comfort it has given them. I listened to one mother who really moved me when she said on the radio that she wakes up every morning and thinks of the recipients and them making the most of their new lives. This is where 'donor' families and 'recipient' families have an intangible link even though we do not know each other. Every morning when I wake up I do a very similar thing, I think of my donor and the new and transformed life they have given me. Not only have I been given the gift of a second chance at life, but they have given me the gift of knowing how delicate and precious life is. The gift of knowing I need to make every second count. 

Sunday, 6 July 2014

National Transplant Week 2014 #Spellitout

Today is the start of this year's National Transplant Week. Currently there are around 7000 seriously and terminally ill people waiting in hope for a life saving transplant. While they have to wait their condition needs to remain relatively stable or else it is likely they will become too sick to cope with a major transplant operation. 

Because there is a shortage of organ donors, the waiting time can be too long and some patients don't survive. Currently 3 people a day die while waiting for a transplant. I was one of the lucky ones and although I waited exactly 2 years, 1 week and 1 day, I got my life saving transplant. That means while I waited 2214 other patients lost their lives. Yes, absolutely shocking isn't it? 

One reason for the shortage of donors is that less than 30% of the population have actually signed up to be on the organ donor register, although over 90% of the population agree they would accept an organ if they needed a life saving operation. 

Family refusal for an organ donation to go ahead because families do not know their loved one's wishes is also a huge barrier too. When families have had the discussion and know their loved one's wishes then they are much more likely to consent to organ donation. Only 31% of families give consent in these conditions, whereas if families know their loved one's wishes this is raised to 90%. It is so important to let your families know your thoughts on organ donation and so important to get familes talking about organ donation, so the aim of this year's National Transplant Week is to 'Spell it Out' and get families having that 'discussion'.

We volunteered to help NHSBT with their campaign as they were looking for volunteers who have been 
deeply affected by organ donation and we had an interview with the Weekly News, which is a weekly national newspaper and our story was published in Saturday's edition, together with a piece from NHSBT and hopefully it will have reached a lot of readers and got them having that all important discussion. 

Last Friday we were invited to take part in a radio show about transplant at BBC 3 Counties Radio in Luton and tell our story about my illness and transplant. The show was broadcast on Sunday and featured others speaking about organ donation from NHSBT, University of Beds and also another transplant patient, who had received a kidney from her husband. It made an interesting programme highlighting many aspects about organ donation and transplant. Again, I hope it reached many listeners, who might now have that discussion with their families.

If you want to see my story, other real life transplant stories, find out more about National Transplant Week or register to be an organ donor click on the link below: 

Don't forget if you want to be an organ donor then tell your family! Spell it Out!