Monday, 29 September 2014

One Year On


It is a whole year now since my transplant and we are spending this time quietly enjoying ourselves together and reflecting as a family.  It's been one amazing year not only with the incredible changes in my health, but also how we've been able to move on and get on with all of our lives once more. We have also had some amazing opportunities that have come our way to try and keep on raising awareness of PH and organ donation. 

Rob has managed to get back to work. He has decided to continue just part time, so that we can also enjoy precious time together and he also helps me with going for all my hospital appointments and all the opportunities we get to promote organ donation and PH. He always says he will never forget where we have come from, although we now have our lives back.

Sarah and Oli have both been promoted at work, have bought their own house and have got engaged. We are planning and looking forward to their wedding next year. Rose and David have both successfully completed their second year of university and have now both started work placements near home for their next third year. 

For me, this year has been completely life changing. As I got better and better I've been able to start doing things for the first time again, things that I thought I would never do again. Many of them are simple basic things that we all take for granted. Things like going for a walk; pushing a supermarket trolley; doing the ironing and even bathing and showering. I even find myself running every time I go upstairs just because I can. I don't think I will ever be able to take these things for granted ever again. I've got my independence back once more after years of relying on other people. I'm still finding I can do more and new things too. 

We've been given numerous opportunities to promote PH and organ donation and had some amazing experiences through doing so, from being on national TV and radio to photoshoots and makeovers, having our story in national papers and magazines and local ones too. We even got to visit10 Downing St. 

I'm working hard on writing my book now, which is keeping me busy and Rob and I have already got a couple of events organised in October to talk about PH and organ donation. I've been busy with my writing course and have another article being published in 'Cumbria' magazine soon. We've also both joined the Transplant Patient's Representative Group for the new Papworth Hospital to try and ensure that we can maintain the high level of ongoing care when the hospital moves to its new site, so that is keeping us busy too. 

The year has not been without some ups and downs, there is still more hospital for a few ongoing issues following my transplant and for ongoing care, but these pale into insignificance compared to what we have been through over the last few years. 

We have also seen some of our friends having to face very difficult times: friends struggling with their PH and friends having to endure too long a wait on the transplant list. We can only hope and pray that things can get better for everyone: that there may be a breakthrough to help treat and cure PH and that our friends get their calls for their transplants sooner, rather than later. This is why we try and take as many opportunities as we can to promote awareness of both organ donation and PH. 

We have also sadly and very tragically lost several friends during the past year too, which has been heartbreaking for all in our PH and transplant communities and devastating for their families. I don't think we can ever take life for granted and losing friends so tragically brings it home to us all once more how precious life is, how time with our loved ones is so very special and how lucky we are. 

Coming together as a family this last few days we have been able to celebrate my second chance at life and how we have been so lucky. That brings me finally to the most important person we are all thinking of on this very special day, one year on from my transplant, my wonderful donor. Tragically, September is always going to be a most difficult time for the family and especially today. There really are no words that we can say that can ever thank my donor or their family, we only hope that the legacy she has left for our family and the other recipients can bring some small comfort. We think of my donor and her family every day and every time I manage to do something that not very long ago I couldn't do. 

Today is for my donor, she has changed not only my life, but my family's and friends too. She has given me the most precious gift, that of new life and hope and also the gift of knowing how fragile life is and how it should be embraced and enjoyed while you can. 

Sunday, 14 September 2014

Time for Run to the Beat Once More

I cannot quite believe it's a year since Rose ran the Run to the Beat half marathon for the phaUK, the charity that has supported our family through the many ups and downs of having a rare disease that no one understands.

It was such a relief to find this charity in those first few days of being diagnosed with a disease that I had never heard of. I remember Rob and I driving home in absolute silence and shock after I was told I had it and probably wouldn't have long to live. We had no idea what type of PH it was at that point; what treatments might be offered; what causes it. We hadn't got as far as going to one of the PH specialist centres that the country has - there are only 9 hospitals in the UK and Ireland equipped to diagnose and treat it - we didn't even know there were specialist centres at that point. 

Of course, at this stage you are practically out of your mind about where to turn or what to do or who to ask. Waiting for your next cardiology appointment for follow up tests feels like an absolute lifetime away, you cannot even begin to wait until your next appointment to try and find out more. It is totally excruciating waiting for the next test and then the other and not knowing where it is going to lead to.

Inevitably you turn to the internet and this can be a very dangerous thing to do when you are in shock, but fortunately I found the phaUK more or less straight away. They sent me numerous brochures and a folder that explained the disease - I remember frantically checking the post every day until they came. The information they sent me helped me get through those next dreadful months while I waited for a formal diagnosis and to see how far advanced my disease was. It is a very complex disease and difficult to understand and I hadn't come across anyone who knew anything about it. 

Even my cardiologist knew very little, so the information they sent me was a godsend to help me get my head around what was happening to me. The best thing of all was how they put me in touch with other patients - real people, with real experiences to share. They run a forum and a facebook forum where we can chat and help one another, because the reality is with something so rare you will definitely not be bumping into anyone who has PH in the doctor's or at work. They also run a conference most years so patients can meet up and become better informed on all the new treatments and research. We have met some of the most inspirational and incredible people through the phaUK, who have now become life long friends. 

Many babies, children and teenagers are diagnosed with this disease and the phaUK run an annual family weekend, where families get to do lots of enjoyable activities and a chance to meet other families who are going through similar experiences. The charity also supports medical research, works with our specialist centres and seeks to raise awareness of PH including amongst medical staff, who are still relatively uninformed on the disease. 

Our family will never forget this organisation that gave us so much help through my illness and still does, as well as our PH family too, who have given us both their unstinting support and friendship over the years. Rose decided she would like to try and raise more funds for phaUK through running the 'Run to the Beat' 10K 2014 run, being held at Wembley this year. 

Rose also felt it was quite a significant time to do this too, as it is nearly a year now since I had my life changing heart and double lung transplant. September will now always be quite an emotional time for our family and Rose doing her run, somehow helps to mark the event and gives us an opportunity to try and give something positive back. 

So very early Sunday morning Rob and Rose set off for Wembley, the weather was fine and not too hot, perfect for running. 

I'm delighted to say Rose completed the race in just an hour and has managed to raise over £600 so far for phaUK. Many thanks to everyone who sponsored Rose and have helped us give a little something back to this wonderful organisation.

Rose's Just Giving page:

For more information on the phaUK click on the link listed below my blog.

My New Normal

We've had a busy few weeks since we got back from holiday. It was straight back to hospitals again: some appointments transplant related; some for ongoing tests for further surgery. It's been a bit full on, but it's all positive. Hospital is a very normal part of life and just has to fit in. My transplant clinic went well - eleven months and two weeks post transplant. My medication is still being adjusted, but apart from that everything is still going well, my heart and lungs are doing fine, which is great news, especially now I've nearly reached a year post transplant. 

It does feel a bit like I've just jumped back on the medical merry go round once more though following our break as I've got lots of blood tests now over the next six weeks as I am dropping one of my medications to see how I get on without it. No sooner had I sorted all my blood tests out with the GP, then I got another call from the transplant nurse to tell me my white cell count has gone too low again, so I've got to stop one of my immunosuppressants again and get even more blood tests to see how things are after that. Then it is back to clinic once more after eight weeks for another MOT. I've been allowed to go two months again for now, but that may depend on how all the blood tests go. 

They are also monitoring my blood pressure now as - as they had predicted -  it is tending to get a bit higher. I'm now having to record it regularly and they are going to decide if I will need medication for it yet on my next clinic visit. I knew this was going to happen and I know I will be needing more medication in the near future. All these medication changes are part of the transplant process and normal. 

I've got one more test to undergo for my impending surgery and then I'm back at the local hospital every month for physiotherapy before they decide what to do about It. I can't have any surgery anyway until I am a full year post transplant and I'm quite pleased that it's looking like it will be after Christmas now, rather than before, if it does happen. 

I am also really pleased that I don't have to have the stomach fundoplication yet as well, as I think it would have been too much with everything else, so that's been a huge relief to get the tests for that all over and done with and I've had it confirmed in writing now since we came back off holiday that all is ok for now. 

Now my stomach has tested ok, this still leaves the chronic cough problem and what is causing it. My consultant thinks it's from the problems I had in my early days after the transplant and is to do with one of the joins that was made, that healed in a peculiar way. As long as he isn't worried then I'm not either. We agreed to see how it goes and I may need some inhaled steroids if it gets any worse and more troublesome. I think for now I'm more than happy to live with this. 

It is also that time of year for flu jabs. Last year I wasn't able to have it, as I was newly transplanted and the transplant team said it was far too early in the process to have it done. This year I need to have it done to get that extra protection for my new lungs. Rob and Rose are going to have it too, to help minimise the risks. 

Finally, at last, I need to get my eyes tested. I was due an eye test when I got my transplant call. One of the immunosuppressants, prednisolone can play havoc with your eyesight and it is recommended that you wait six months until everything is settled before you get your eyes tested and buy new glasses. I was still having it reduced at this six month point, so had to hold off for a bit longer. So it's now time to get my eyes tested at long last, just a whole year late. 

The positive thing is that my heart and lungs are working brilliantly and things are all settling down now and although there is still a lot of medical appointments, I am feeling really well. 

Rob has been busy back at work in between all the hospital stuff and I've been trying to be very disciplined and get on with writing my book. September has been glorious so far and it's been lovely sitting in the garden and enjoying the late sunshine and writing away... still way to go, but I've made a good start and am getting into the swing of it. 

We are also still trying to do some more positive things to try and increase the numbers on the organ donation register and have plans for a couple of things in October. More about all that another time 

We've been trying to get out and enjoy ourselves in the sunshine too. I think we are always trying to compensate for all the hospital stuff and prodding and poking and unpleasant tests by doing nicer things and visiting new places. I think our life is always going to be this up, down; up, down rollercoaster and this is our new 'normal'. 

One Sunday we went up to Canary Wharf in London - yes exactly just like that - no planning beforehand anymore, just getting up and spontaneously deciding to walk round to the train station, get on a train, take the underground, jump on the Docklands Light Railway and walk about 5 miles all around the docks: we visited a cafe or two, had a picnic and enjoyed all the tall ships that were in dock  on Wood Warf. It was the Falmouth Royal Greenwich Tall Ships Regatta. 

Rob had seen some of the ships coming in to dock from his office and I really fancied seeing them and getting some photos. He then gave me a grand tour of his office, which has some fantastic views. He has worked there during the last two years, so it was nice to see his actual workplace. Now I know where he goes when he disappears for the day! 

There is no way I could ever have just gone off spontaneously like that and done that much over the past four years and that's when it dawns on me just how far I've now got during this last year. 

So there's still quite a bit more medical stuff to get through yet, but we are also trying hard to make up for this by having good times, enjoying the health I'm now blessed with and trying to achieve some positive things as we go. Life is rich and full now, I think I'm getting used to my new normal and I'm looking forward to more milestones very soon ...

Saturday, 6 September 2014

September and a New Start

Me and my friend Bente
Me and mum

After a wonderful time in the Lake District and spending time with family and friends, I was all ready to get back into some routine - well that's if I can say we've had any routine over the last few years. September always feels like a time to be getting back to normal after a busy summer.

True to form routine doesn't know how to happen in our house. I had had a really bad night - this isn't unusual - one of my drugs can cause insomnia and I can get headache too, but it is managable and usually once I'm up and about things are fine, so off Rob went to work. 

Flowers at Holehird gardens

The headache became worse than usual though and then it was followed by awful sickness that went on and on, so I wasn't sure what was going on: food poisoning, tummy bug or even one of my drugs causing it. 

Sickness is always worrying when you have had a transplant, because you are in trouble right away when it comes to the immunsuppressants. Basically if you don't absorb your immunsuppressants then it can become life threatening. So Rob didn't get to work for too long, probably for about ten minutes before he thought it better to come home. 

Fortunately things improved over a few days, I managed somehow to take my immunosuppressants, so avoided hospital and by Friday we were all back to some normality and ready once again to try and make that new start after summer. 

Swans on Ullswater

September has always been my month for making a new start. I suppose it started with school and the new school year, then when I started work, it was back to college for the work related exams. It carried on when I had the girls and they were starting in a new school year after the summer holidays. It then continued as I became a teacher. September was always a fresh new school year, a fresh start with a brand new group of children to get to know and take through all the steps of the new term and new school year.

It has always been a significant month in my life and now all the more poignant than ever as it is coming up to nearly a year since my transplant and September is the now the month that marks my new start in life, the month I got my life back. 

Lake Distric life!

It feels like time to be getting myself organised now the summer holiday is over. We've been busy making lots of plans: we've got plans for more travels and I'm going to be busy with my book, which will be one of my main priorities for now, as well as continuing to keep on raising awareness of both Pulmonary Hypertension and Organ Donation. We have a few things on the go at the moment starting with next weekend when Rose is taking part in the 'Run to the Beat' once again.

Flowers at Levens

Rose decided to take part in it again once more as a big thank you to all those PH friends of ours, who have given us unstinting support right through my illness and for the overwhelming support I was given through my transplant and this last year. You know who you all are and we cannot thank you all enough!

The race is a little shorter than last year's half marathon, which was at Greenwich and will be a10k run at Wembley Park this year. Rose hopes it will raise more awareness for Pulmonary Hypertension and much needed funds for the PHAUK, the charity which supports all those affected by PH.  

People of all ages are affected by PH including babies and children and as yet there is no cure for this cruel disease. Rose is especially thinking of our dear friend Stacie, who is only 23 years old and has lived with PH since she was a child and is waiting for a heart and double lung transplant. She has been on the waiting list for nearly two and a half years now. 

The PHAUK has been supporting our family throughout all my illness and transplant too and I know we wouldn't be in the place we are today without them. If you wish to sponsor Rose, you can do so on her 'Just Giving' page above. Many, many thanks to everyone who has sponsored her, we really do appreciate your support. 

There is more information about the work of the PHAUK on their website listed below my blog. 

So here is to September, new starts and new beginnings and good luck to everyone starting back at school, college or university and anyone else starting afresh with new things.

This is what organ donation can do -  new starts:new opportunities!