Friday, 31 May 2013

Just Sitting Back and Enjoying Life

This week was a good one. I seem to be have had a little spell this week with no hospital, doctors, clinics or drug deliveries, so that is always good!

We headed back north to the Lake District on Saturday, of course we met up with all the world and his mother going away for the Bank Holiday weekend and first day of the school end of term break. In the past we would have travelled very early in the morning and got to the Lakes by breakfast missing all the traffic, but I can't manage to get up in the early hours and do that anymore. We had had a plan to drive up on Friday evening to try and avoid the heavy traffic, but by the time Friday evening came and I'd got myself packed and ready to go, I'd hit the point of no return and was too tired to contemplate walking to the car let alone travelling. The weather was atrocious too, rain and gales so didn't bode well for a long journey.

So we set off on Saturday morning knowing the traffic was going to be bad. The journey took over six hours and was one of the worst we have had in all our years of travelling back north. But we got there and got ourselves sorted out and unpacked and the weather turned glorious and it was a stunning evening to go down to Arnside and sit by the estuary and enjoy the views with a nice cold drink and a pub dinner. So the day ended well, well pretty much perfect!

Sunday was glorious too and we decided not to travel as far as we originally planned, after the long day travelling on Saturday and we just browsed around locally, enjoying the sunshine, scenery, people watching and some of our favourite pubs. It seems to make everything extra special these days when the sun actually decides to shine, we have had so little of it this year, it is becoming a nice surprise when it does come out and Sunday was one of those days. A day just to sit back and enjoy life!

Monday was back to wet, cold and wind, but we still managed to get out and about in it and Tuesday we drove down to Lancashire to spend some time with my mum for a few days. We thankfully had a better journey home. So all in all a good week and now it's nearly weekend again and the sun is shining again today...

Enjoy the photos

Devil's Bridge Kirby Lonsdale


Dallam Estate, Milnthorpe

If you want to sign up to the organ donor register click on:   


Thursday, 23 May 2013

Precious Life, Special People and a Most Precious Gift

Our week, this week, started with some shocking news of our dear elderly neighbour being involved in a terrible car accident and it was a very stark reminder of how fragile life can be and how you can wake up one day and go about your ordinary business, but life has something very different than what you planned in store for you. It really brought home to us, yet again just how precious each day is. We are hoping and praying our friend will recover and we will be able to see her soon.

We went back to Papworth on Saturday, not for me this time, but to visit a few friends who are in hospital there.

First stop was to Mallard Ward to see Anne, who was 9 days post heart and lung transplant and making a very good recovery. She was happy, smiling and and still in shock that her transplant had actually happened. It was really good to see her and as well as laughing and smiling, we shed a tear or two! She is still recovering well and has been for a few walks outside, to the gym and is looking forward to going out for a couple of hours for Sunday lunch this weekend. So onwards and upwards Anne, hopefully she may get home sooner than she ever expected.

Next stop was Princess Ward for a quick hello and chat with Sita, who was in hospital for a procedure to sort out an ongoing problem she has been struggling with since her transplant. Sita is one of the bravest people I have ever met, when I think of all she has gone through, first with her PH, then with her heart and double lung transplants and now she is having to cope with a very difficult recovery. We are wishing her well and hoping that she can make a few steps forward to going home.

We then saw that Bernice was on Princess ward too. Bernice was on the ITV News 'From the Heart' campaign with us and we recently met her in the Transplant Continuing Care Unit. She is waiting for a heart and double lung transplant too, so we popped in to say hello to her. Again, we are wishing her well and hope she gets home soon or better still gets her call for her heart and double lung transplant.

On Monday evening around about 11 o'clock we were just going to bed when we both got a text from Stacie, saying she had got her phone call for her transplant. Stacie is a PH patient like myself and has been waiting for heart and lung transplant for over a year now. She was still waiting for the transplant team to ring her back and give her more news. Of course there was no way I was going to go to sleep until I heard more news, so I asked her to let us know any more news if she was able to. An hour later she let us know that they were sending a car for her and they would be able to let her know more once she got to hospital. So we chatted a little longer, then half an hour later her car arrived. She was on her way then, but I still couldn't get to sleep not knowing whether it was going to go ahead or not. We chatted and joked more while she went on her journey, her mum and dad following in tow and we checked we had Megan's number, Stacie's twin, as we knew Stacie would probably lose her signal once at hospital and would probably be too busy and have too much on her mind if things went ahead.

By 2 am we were dozing off back to sleep then we were awakened by my pump beeping and when I sat up I felt really unwell. In all the excitement I had drifted off to sleep with my line twisted and my drugs were not getting through. Eventually we sorted it and after I was sure I felt all right again and the drug was getting through we went back off to sleep. At 5am we got another text from Stacie to say it had ended up being a false alarm as the lungs were not in good enough condition to use for transplant.

We were so disappointed for Stacie, but she very admirably took it all in her stride. We are prepared by the Transplant Team for false alarms, for a variety of reasons, so we are very aware it may happen, but still when it does, I think it must be very difficult. Stacie was pleased though, as they told her the heart was in good condition and another life was saved that night instead. For us, well it's really encouraging to know that donor organs do become available and that those phone calls we wait so eagerly for do happen. Hopefully, for Stacie, it will be soon now she has had a practice run.

With all this transplant activity happening, it got me thinking about organ donors and their families and none of this would even be happening without them and how without their willingness to commit to organ donation there would be no options left for people like us.

When we were in the ITV campaign 'From the Heart', Rob and I came into contact with many families who's lives had been affected by organ donation and transplant. One very special person was Sally, who featured on Granada Reports during 'From the Heart' week. Sally is a mother who found herself in that dreadful position of being asked if she would say 'yes' to donating her young son, Toby's organs after he had a tragic accident whilst they were on holiday. Sally always says that the decision was an easy one, because Toby had told her that was what he would like to do should anything ever happen to him.

Since Toby's accident Sally and her husband Graham have campaigned relentlessly to raise awareness about organ donation and have also run events to raise awareness of Cystic Fibrosis, one of Toby's friends had CF and it was a cause dear to him. Toby's story is a very inspiring one for me: it helps me know that when I may get my heart and lungs, that is what the donor and their family wanted; it helps me to know that there are generous families out there who are willing to give the most precious gift of all, despite the despair they are going through. I hope Toby's mum and dad can see that not only has Toby saved several lives, but he has also given a lot of people like me and our families some inspiration and encouragement too.  
You can follow Sally's very moving story on her blog and take a look at the website dedicated to Toby, by clicking on the links below:

So, this week, in a nutshell, for us, has been one of both appreciation, encouragement and inspiration. We have learned yet again how precious every day is; we have been inspired and encouraged by special friends we have seen or been in contact with, who are treading very similar journeys and we are inspired and encouraged that there are families who are willing to help us along the way.

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 

Friday, 17 May 2013

Busy with Travels, Garden, Books and Cooking

We have found that the best thing to do while I wait my transplant is to keep ourselves as busy as we can doing things we enjoy. It helps to take our minds of things and my illness and as a family we are very determined to try and carry on as normally as possible, whilst making the most of our days. That's why we are always out and about when I feel up to it and I try to keep up and enjoy some of hobbies I have always enjoyed. Every moment is precious to us.

This week saw us taking Rose back to Bournemouth as she has her university exams next week. She came home for Easter and decided it was a quieter place to do her work and revision than in her halls of residence, so she stayed at home for an extra few weeks longer. This was really nice for me having her around again and it feels very quiet without her now. She will be back in a months time and I cannot believe that will be her first year completed. It seems only a blink back to last year when she was sitting her A levels and planning to go away. 

Rob and I have been quite enjoying the fact that Rose chose to go to Bournemouth when she decided to go to university, as most of you know reading my blog, we enjoy a new place to visit, so now we have a great excuse to discover Dorset and the surrounding areas, somewhere we haven't ever visited before. It is a two hour run to Bournemouth from Hertfordshire and because I'm not well, too much for me to manage there and back in a day, thus another perfect excuse every time Rose comes or goes to have an overnight stay or two. I also really like to be there to pick her up or take her back, I think more so perhaps because I know I might not be able to do it one day, so while I can I do. 

We chose to stay in Christchurch, which is only a short drive from where Rose stays in Bournemouth and we normally go self catering as this makes it much easier to manage with my illness and medication routines, we can just please ourselves, do what I can manage and explore at our leisure. If I don't feel well and I'm having one of those bad days then we can make ourselves more at home in our own place. Rose also came and visited us for a night once she had got settled back in her own place and unpacked.

Christchurch is well worth a visit. It is a busy market town, which developed into an important trading port in the 9th century and it is located at the confluence of two rivers, the River Stour and the River Avon; it has a natural harbour and an attractive quay, where you can while away your time watching the wildlife and the comings and goings of sailing and motor boats and all sorts of river traffic; it is dominated by a historic priory dating back to 1094; it has an Anglo Saxon water mill and has some 12th century castle ruins, plus some excellent beaches and nature reserves. There was also a big Food festival going on while we were there so there was lots to see and do in just a short space of time.

I hope you enjoy this weeks pictures taken in Christchurch and get a feel for what the place is like, of course by now you will know photography is a big hobby of ours, keeping us busy! 

Easter flower, better late than never!
One of the things that I've always been really passionate about is gardening and although I am really limited now as to what I can manage and that is really frustrating for me, Rob and I are always planning new things for it and trying out new plants. Rob does most of the hard work on his own now and over the last few years while I have been ill, he has transformed it and made it really beautiful for me to enjoy. He has planted lots of new plants so there is always something of interest out there. 

Tulips enjoying the sun
At last some cherry blossom
Although as I write this it is only about four degrees in temperature and windy and wet, after that first big show of daffodils a few weeks ago and that little glimpse of spring weather the other week, the garden seems to be bursting into colour, with all sorts of different plants making a show. The cherry blossom has come out about three weeks late, the apple blossom is opening and the bluebells are coming out. Rob planted a new magnolia bush for me a few months ago and that's in full show and I also found some snowdrops flowering, which he planted a bit late last November! We also have some very busy blue tits nesting in both the bird boxes, hundreds if not thousands of tadpoles in the pond and we have had goldfinches, long tail tits, greenfinches and chaffinches visiting the bird feeder and having a crafty bath in the pond. We have blackbirds nesting in a honeysuckle over the front door, so we are trying not to be too noisy as we come and go. On a quiet day it's looking lovely to look at and there is lots of comings and goings to watch.   
Forget me nots and phlox
Reading is one thing I've always really loved doing and it is something I can still do very easily and now I'm not working any more and have to rest a lot I have been able to read much more. I have really enjoyed being able to this, without needing an excuse to be able to sit down. A good book can transport you miles away and be very absorbing, which can be a good thing for me! I've set myself a little challenge earlier in the year via the Goodreads website. Goodreads is a website where you can get book recommendations and find out more about books you might like to read, many members give reviews and ratings for books, so you can get a feel whether a book may be to your liking or not. I'm trying to keep myself busy and read at least one book per week. You will see a Goodreads icon at the bottom of my blog, which has been there a while now and if you click on it you can see which books I've been reading.

Jew's mallow
My book for this week is The Rose Petal Beach by Dorothy Koomson. I decided on this one because I really enjoyed ITV's drama Ice Cream Girls, which is written by the same author, I was only sorry I hadn't read the book first before I saw the series. So far it has been a real page turner from the beginning, I am only half way through, but it's a hard one to put down. It is a book with a few sinister twists and you are left wondering what really did happen, very similar in style to Ice Cream Girls, if you enjoyed that.

Cooking is another thing I am really enjoying, having more time on my hands and I've found ways to keep this up such as sitting while I'm doing the preparation work and making sure I rest in between doing things if it's a recipe that takes some time and preparation. This month seems to be asparagus season and after we had had some friends round for dinner one evening, where Rob and I shared the cooking and preparations we had quite a bit of asparagus left over, so I decided I'd make my own asparagus soup. It turned out quite well so here's the recipe:

Asparagus Soup


Olive oil
Two onions
A bundle of asparagus finely chopped
500ml of chicken stock
A pinch of garlic
A pinch of celery seed
Black pepper
A few tablespoons of fresh cream  


Heat the olive oil and add the onions until softened, add in the asparagus and cook for 5 minutes or so, add the stock, black pepper, celery seed and garlic and simmer until the asparagus is fully cooked. Add the fresh cream and then put in a blender until smooth. 


So a very busy week again while we wait, in many ways the weeks are passing very quickly and we are filling them with enjoyable things in between the ups and downs, 607 days of waiting up to now, so let's hope not too much longer to go, but in the meantime, well we are already planning this weekend...

The new Magnolia

Wednesday, 15 May 2013

Wonderful News

Feeling bright!

Since I published my blog last week, we had the wonderful news that my friend Anne got her phone call on Thursday to say they had got a match for her new heart and lungs. She went into the operating theatre very early on Friday morning and we had what felt like a very long wait during Friday day time to hear any news. Again, like when Sita had her transplant, it really brought it home to me what the family has to go through while they wait for news. Anne's brother kindly updated us all that her operation had gone as well as it could and by Sunday morning Anne was sitting up in bed asking for Jelly Babies. By Monday evening she had even managed to find the WiFi and was posting on facebook and having a chat with me and a joke with Rob. I found this rather amazing given that she only had her transplant on Friday and am so pleased to hear that things are progressing well. She is still really tired and has a long recovery to face now and Rob and I, together with many others are wishing her all the very best of luck for her recovery. We are hoping to go and see her soon if she feels up to it.

Swirling emotions
Rob and I have found it really encouraging to see that 'yes that phone call does eventually come' and probably when you are least expecting it, although you are expecting it all the time. When I first went on the transplant list, I felt very isolated and on my own, as I didn't know anybody else with my condition who was on the transplant list, let alone anyone even on the Transplant List, but soon I was joined by Stacie, then Sita and Anne and we all became quite close because we all had Pulmonary Hypertension and we were all able to help one another through the traumas of various medications we had to deal with, dealing with the illness itself and living on the Transplant List. I find it really encouraging now, since we all met up last October, two of us have now had our transplants. I don't think that is bad going in just six months.

Since we met up in October we have all managed and I think I can say thanks to each other, to have more contact with lots of other transplant patients and we have become part of the 'Transplant Community', who give each other much support and along with the support we get from the PH community, this is invaluable.

As some of my friends with PH have come off the Transplant List, more have gone on it too, like Hazel, who has also been waiting for a new heart and double lungs for quite a few months now and there are some of my friends going through the frightening process of Transplant Assessment, like Lynsey and Karen and we are fully aware of the all the angst they will be going through at this time. So we desperately need to keep fighting to get the numbers on the organ donor register increased, they don't go down just because a transplant has happened. The statistics still stand that over 1000 people a year die while waiting on the Transplant List and three people a day are dying because there are not enough people on the Organ Donor Register.  
Ebbing and flowing just like the numbers
There were 16 people in the UK waiting for a heart and lung transplant when I first went on the register in 2011 and there is currently still 16 of us waiting. Waiting to get heart and lungs is becoming increasingly difficult as the numbers waiting for hearts are increasing and the numbers waiting for lungs are too. Currently they stand at 196 waiting for a heart and 227 waiting for lungs, so you can see the difficulty in needing both heart and lungs and the miracle of it when a set of heart and both lungs become available.

Just waiting, waiting, waiting
There are many others waiting for Transplant whom we don't know and they are waiting for different organs for all sorts of terminal conditions that they are suffering from. Over six thousand people are waiting for a kidney transplant and over two hundred waiting for kidney and pancreas transplants. There are also over four hundred people waiting for livers. The latest figure of all those on the transplant list is 7336, which is a lot of people and if you add in all those affected such as family, friends then this can multiplied ten fold. This suffering can be reduced if more people would sign up to be organ donors.

Currently over 90% of the population say they would be happy to receive the gift of life and take an organ if they found out they were dying, yet only 31% have actually signed the organ donor register.
Although many more people have now signed up, this figure has only increased by 1% in the last year. There is much more likelihood that you may need an organ, rather than have to donate. So a very sobering thought for those people who just can't be bothered to sign up.

If you were in the eye of the storm you would take one gratefully
Remember to tell your family your wishes if you are an organ donor, as family refusal rates are still high when a family doesn't know whether or not you would want to donate. Over 40% of families refuse to donate organs when they do not know their relatives wishes. Around 90% consented when their relative was signed up to the organ donor register and their wishes were known.

Just in the lap of the gods
I have been waiting for my new heart and lungs for over 600 days now, 605 to be precise. There is no queue or bottom or top of the list, it is just a simple case of waiting for a match which is best for you, matching your weight, size, blood group and antibodies. So it is somewhat of a lottery and you sometimes feel like you are just in the lap of the gods, but when you are ill enough to be on the Transplant List, there is no alternative than to keep hoping and believing that your day will come and I never think anything other than it will one day when the time is right. Meanwhile I just keep trying to live life to the full and enjoy all things I love in life.  

One of the first things my friend Anne said was to remember her donor. There wouldn't be a Transplant List or a remote chance of Transplant if it were not for the people who were prepared to give the ultimate gift of all, the gift of life, and for their families, who in their most distraught and darkest moments gave their consent to go ahead with that most precious gift.   

New life just waiting to emerge! 
And now they're beautiful swans

There are several facebook forums where you can get support for both PH and Transplant, they are private groups, just look them up and request to be added:

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: