New Life, New Opportunities, New Year!

The last year was the most amazing year when I started a new life with many new experience and opportunities. It started with Sarah and Oli's engagement and a flurry of searching for wedding venues in January. January also saw me eventually coming off all the inhaler medications I had been on since my transplant - three of them three times a day - and coming off heart failure drugs at long last now my new heart had become stable after my transplant. Late January was the last time I had to have a bronchoscopy after having to have them nearly every week for months. Without all that came new freedom and we visited London to meet friends. We were pinching ourselves and I couldn't believe how much better I felt, how much I could suddenly manage and how far I could walk.

The year continued well and I'd thought I couldn't get much better, but I just kept on getting better and better. Rob and I did quite a few national and local media interviews over the course of the year to help raise the profile of transplant, organ donation and pulmonary hypertension including ones for Hertfordshire Life, Heart Matters (BHF magazine) and The Weekly News. We featured several times throughout the year in The Hertfordshire Mercury, The local Comet newspaper and on local radio Bob FM Home Counties. We also worked with NHSBT during National transplant Week and for their Christmas campaign and were featured on BBC Three Counties Radio, where we were given the opportunity to visit the radio studios in Luton. Speaking about organ donation and pulmonary hypertension is our way of trying to give something back for all the good fortune we have been given.

We seemed to get one wonderful opportunity after another and they just kept on coming. I enrolled on a writing course at the beginning of the year, so I could start writing my own articles for publication and one of my articles on my transplant was published in Cumbria magazine. I won a competition run by Woman and Home Magazine for writing a small article on 'Seizing the Day' and had a full style, makeover, photoshoot and interview published in the September issue of their magazine, plus a thousand pounds prize money for Papworth Hospital Charity. In October I was invited to speak at one of their reader events about my transplant and making the most of life. They were all interesting and new experiences to be part of and at the same time raise more awareness of organ donation and pulmonary hypertension to new audiences.

In July we were asked to take part in a launch of the government's 100,000 Genomes Project and were featured on all the main TV channels as well as getting to visit the Sanger Institute in Cambridge to see how the genetic testing machines work. We also had the wonderful and exciting opportunity to visit Downing St when the project was officially launched and this led to more local press interviews. At Downing St, I was pinching myself because I was able to walk at a fast pace up those famous stairs. It never ceases to amaze me what having my transplant has given me.

I had many small personal goals and dreams to work towards as I recovered including going for proper long walks once more. I set myself a challenge to walk around Tarn Hows in the Lake District in summer, but managed it in March. I wanted to get back in my kayak once more and managed this in June when I kayaked across Coniston Water once again, much to my delight. I travelled abroad once more, after nearly five years and went to Paris by Eurostar. After falling ill I had been deemed too unfit to fly and was unable to anyway being on the transplant list. I made my first flight abroad in October, just a short one to Amsterdam and this gave me confidence to make another dream come true and make a long haul flight to New York in December. It was wonderful to visit some new places.

To a lot of people these are just normal and everyday occurrences, but for me they are massive steps as they are all things I thought I would never be able to do ever again. Achieving these things have been a bonus and the icing on the cake, but the thing that still really amazes me is the fact that I can walk around normally again without using a wheelchair or measuring how far I have walked so I can make sure I can manage the walk back again. It is still special to bath and shower normally without worrying about medical equipment getting wet and it is amazing to run up steps. I run up stairs every day now just because I can! These are the things that healthy people take for granted, having had these taken away from me over the years and then suddenly getting them back is something that still astounds me even a year on.

Standing at the top of the Empire State Building at night time watching the lights of New York twinkling and fireworks going off over the Hudson River was a spectacular moment and more than a dream come true at the end of this year, but it still dazes me and fills me with awe when I walk around Tescos pushing a trolley and filling it with shopping. Extraordinary things and just ordinary things are equally amazing when you have a new chance of life. I had lost my independence and to have that back is a miracle. 

I'm not quite sure how 2015 is ever going to measure up to last year, but I have lots of plans and dreams already, so I'm hoping for it to be even better if that's possible. It is a big year for our family as we have Rose's 21st, Sarah and Oliver's wedding and our 25th wedding anniversary. These are all massive milestones for me to aim for, moments I'm looking forward to that I didn't dare ever hope to have. 

I'm also well underway with writing my book and one of my New Year resolutions is to get my first draft completed during the first part of this year. I'm also continuing with my writing course and hope to have more articles published during this New Year.

I'm not going for all the slimming and exercise resolutions, but after all the festivities I just plan to get back to eating sensibly and healthily and making sure I keep up my walking, yoga and exercise bike. I have got some new yoga DVDs for Christmas and a yoga mat, so I'm planning to step up the yoga a little. 

Of course, it goes without saying that our family will continue to raise awareness of both organ donation and pulmonary hypertension and in this respect the New Year has started well with an article in the Japanese Times, a Japanese national newspaper, about the UK's Genomics programme. The article features an interview I did with Kyodo news on genetic testing. 

http://www.japantimes.co.jp/news/2015/01/01/world/science-health-world/major-genomics-program-underway/#.VKVD9ktMI9e

I know that time has gone on now since my transplant and it is hard to gauge where I would be without it. I cannot thank my donor enough for the wonderful experiences and opportunities that I have had since being given my second chance at life. Without my donor none of them would have been possible including all the new hopes and dreams I have for this new year.

I wish everyone a very happy and healthy New Year and hope that you have many plans and dreams that you can make come true. Here's hoping it is going to be a good one with more new opportunities and experiences.

Blood Tests, Flu jabs and more on Genomics

It was back from Amsterdam with a bump last week and Tuesday started with more blood tests to check whether my white cell levels where back where they should be.

I've started getting my blood tests done at the local doctor's surgery to save me a two hour round trip to Papworth. It just involves me booking the blood test with the receptionist, which has so far all been dealt with very efficiently, and then I receive paperwork from Papworth to take with me when I see the phlebotomist, again all very efficiently dealt with.

The big problem comes when I go in to the phlebotomist and the reaction I get when they receive the paperwork. On my very first visit I gave my paperwork in and was told, 'This isn't the normal way - you should have it written down on paperwork format that looks like this!' A waft of papers that had been generated from a computer was then waved in my face. With that attitude being taken with me I could see these tests were not going to happen if I wasn't careful, so I very firmly replied that this is the paperwork I had been sent and I needed the blood tests undertaking and wouldn't be leaving the room until they had been done, as it would be a danger to my health not to be checked. The person then agreed to proceed and sort the paperwork afterwards.

The next visit didn't go very well either, a different person was taking the blood samples and I handed in my paperwork. After a lot of huffing and puffing, the person went off to ring her supervisor at the hospital and then came back and agreed to do the tests after I had been given one very stern telling off for not following correct procedures and telling the doctor's receptionist about my paperwork first!

On my next and latest visit this last week, I then went to the receptionist first, showed my paperwork as I'd been ordered and was looked at like I was bit strange. The receptionist was really helpful and I explained I had been told off for not doing this last time, she checked the computer and said all was in order and it was all booked as normal and just to take the paperwork in with me. So off I went in again and was greeted with the same confusion as before - a long, disdainful look over the paperwork; a, 'Have you told the receptionist about this?' And so on... again, eventually I managed to get the bloods taken and was ordered once more to make sure I tell the receptionist when I come next time ??? !!!

I cannot really understand why all this has to be such a difficult procedure, but as I am having to have so many blood tests at the moment, I really feel I should try and build up the support I require locally, rather than running off to Papworth every five minutes, so I am determined to persevere and keep that smile on my face until they get used to me and my hospital's paperwork!

Next up later in the week was my flu jab, needed because I am classed as vulnerable having had a transplant. I booked in along with many other patients coming and going that day, we were ushered into a corridor where several nurses were just calling out our names in turn. I'd been advised there were four more patients in front of me. People kept on going in and I began to feel I'd been waiting a little too long by now. Rob was sat in the main reception and suddenly came through to tell me that my name was flashing up on the screen to see the doctor and not one of the nurses, so good job he was sitting there and off I went to find the doctor.

As I came through the door, the doctor said right lets see your arm. I thought to myself he must be helping with the flu jabs. I got my arm ready and he proceeded to say, 'Well where is it then?' Mmm,  'Where is what? Apparently I've already had my flu jab and am now having a bad reaction to it with a bad rash! I really don't know what happened there, but obviously it could only happen to me! By then I had lost my place in the queue, but they did manage to slot me in pretty quickly thankfully. Rob and I kept joking afterwards that it would be just my luck to come out in a rash and need a doctor once I'd had it done!

I feel sometimes over the last few months, that a lot of this straightforward medical stuff always seems to turn into a complicated affair, I don't know whether I've just been unlucky or if it's because I've got complex medical needs or just whether it's because hospital is an integral part of my life. I recently had to see a consultant at my local hospital and after an hour of waiting, I was informed by the nurse that I had been kept waiting because they hadn't got my paperwork - I was sitting in a hospital in Welwyn Garden City and then had to wait most of the afternoon while it was transported over from Stevenage.

I do try to be patient with all these goings on, but it does get trying. I also went for a routine test recently at one hospital, where my privacy was seriously neglected and it caused me so much distress that for the first time ever I wrote and complained and the hospital did a full investigation and this week wrote to me and admitted their negligence and apologised profusely. I complained really, so it would not happen to anyone else, but I can put that episode behind me now, knowing they have admitted their incompetence and are putting in procedures to avoid it happening again.

I am having some physio at my local hospital at the moment and had a session this week too and that is going really well and the lady who is helping me is great and really understanding. It is not, thankfully, always such an effort and I do try and laugh things off and friends are telling me to maybe write a book about all my 'funny' hospital trips! Maybe I will one day and that will be my next book and we can all have a good laugh!

Fortunately, there have been more positive things happening than negative this last week. I got my own article about Cumbria and my recovery from my transplant published in 'Cumbria' magazine. It felt good to see something I had written published in a magazine and also raising awareness of Pulmonary hypertension and organ donation at the same time.

I was also asked by Genomics England if I would help with a media interview with a Japenese news agency, Kyodo news, which is a leading news agency in Japan. Representatives from both came to our home and I did the interview and had photographs taken. Genomics England is a company wholly owned by the NHS and are responsible for the government's '100, 000 Genomes Project', where genetic sequencing is planned to help and treat patients who have rare diseases and cancer. The article is planned for publication on New Year's day and should reach a large audience in Japan. I was interviewed about my pulmonary hypertension and transplant and about how I had had genetic testing to see whether my daughters may be affected with the disease and how I had given DNA for the genetic research that is being undertaken on PAH and the importance of that.

On Friday I was back at Papworth, this time not for medical reasons, but as part of a new 'Transplant Patient's Representative Group', where we are working closely with the Transplant Team on issues such as the new hospital move. I am pleased to be part of this group and hopefully it will prove a good source of support for the Papworth transplant community. If you are a Papworth transplant patient and have sent in one of the many reply slips and letters about our new hospital, many thanks for doing so and for your support. We are still collating all your comments, so keep them coming if you haven't yet responded and don't forget there is the new transplant patient forum on the main Papworth website, accessed under transplant, where you can give your views, tell your stories etc. You will need a code to initially 'log in' and you can get that from the team or it is on a letter that came out with the last issue of 'Transplant Times'. It would be great to see more patients posting on there.

All in all, it's been yet another very positive and busy week, with a few blips or maybe I should say laughs along the way! I am so looking forward already to the saga of the blood tests again next week...!!!

Lastly, take a look at my gardening blog, my michaelmas daisies are out and in full bloom. It was exactly a year ago last week that I came home from hospital. One of the very first things I did was to walk down the garden - walking was a struggle at that point - and look at my michaelmas daisies, which I knew had come out while I'd been in hospital and at times I thought I may never see them ever again. When I see these flowers now they are a timely reminder of my transplant and the very special lady who gave me the gift of my new life, who allowed me to have this last amazing year and who helps me every day to know that life is very precious.

http://thiswaytothegarden.blogspot.co.uk