Have Yourself a Merry Little Christmas ...

The week has been a really good one. I've managed to get together and catch up with lots of friends and we also felt it was time to try and do our bit again to promote organ donation, having now had a good few weeks recovering and feeling better each week.

I'm beginning to feel like life is busying up, settling down and becoming much more normal again in many ways. As a family we are feeling full of hope that the New Year is going to be a good one - and that is one of the big differences transplant makes to your life, your hopes, dreams and expectations increase each week, instead of dwindling before your eyes as they did before transplant. My quality of life was diminishing and the odds felt like they were going against me, that is all different now.

Firstly, I had an hour or so out with the girls on Friday night, it was so lovely to see everyone and a little surprise for some, my friend Lesley had hatched a little plan for me to turn up and surprise all the others! It was great to be out and about again with friends. 

Then I met up with more friends on Tuesday, Kath and Michelle and my two favourite little girls Emily and Sophie, who I had been so looking forward to seeing after my transplant. Unfortunately, they had all been laid up with various infections, so they had to stay away for a whiile, because of the high risks I have to infection after my transplant. So it was really great to catch up at long last and see them all and enjoy the children - and lots of cake and tea! I got a beautiful rose bush for the garden to celebrate my transpant, very aptly called Joie de Vivre and a lovely little cake stand for my cup cake and we all exchanged some Christmas pressies. 

Then Wednesday it was time for another clinic visit to Papworth. This was a really good visit, after worrying that I might need more surgery, they had decided that they are going to carry on monitoring the situation and give me another bronchoscopy and a CT scan in three weeks time so they can keep a close eye on things. They are thinking there may be no need for a biopsy on my windpipe or surgery now, so we are hopeful and keeping fingers crossed I'm not going to need it. I will have my lung biopsy to check for rejection again in three weeks time too, so will be staying in hospital for a day or two. Everything else was looking fine and it was great to come home reassured again and be given three whole weeks off hospital to enjoy the Christmas festivities. 

At Papworth, I also got to meet up with a few patients who had had their transplants the same week as I had mine and it was great to see that they are all doing really well too. We also met up with Bernice, who after a long wait and being extremely poorly and hospitalised on and off for months, got her new lungs only two weeks ago. Only two weeks post transplant and she met us in the canteen for a cuppa and looked fantastic and best of all she wasn't on her oxygen! It was so good to see her and meet her lovely mum and grandad too. 

So a really good and very positive visit to Papworth on all fronts. 

The day got better, on my return home, I had a lovely visit from Rose's best friend, Lisa, she has been our daughter number three since she was about two and it was so good to hear all her university stories and exciting plans for next year. 

Rose eventually came home at the weekend, we had to delay bringing her back from Bournemouth for quite a few days because she had a sickness bug and of course it would be dangerous if I had caught it. So we had to make sure that it was quite a good few days that she had been clear of any symptoms before we could bring her home. It was hard knowing she was a long way away from home and poorly, but her housemates rallied round and looked after her until we could get her home. Rob had also come down with a bad cold the other week too and we had to take extra precautions until he was clear, so I could try to avoid it. I realised though that I was quite accepting of all this and not getting too frantic and was quite relaxed about it. If it had happened in the earlier days I know I would have completely freaked out, so I feel I've moved on a little bit from those first few weeks and I realise I'm beginning to get much more confident living with my new heart and lungs.

It's super to have Rose back and coming and going with her pals. Best news ever is that she has got a placement near home for her third year, which she had an interview for this week, so we will have her back in summer for a whole year or so. David has also got his placement for next year working in London, so will be living at home too, so we are expecting a livelier household again next year. That will be so good! I feel we are all making plans and moving on with our lives again after all the upheaval.

Thursday we had a visit from both our local radio station, Jack FM and the Welwyn Hatfield Times, our local paper, so we could help promote organ donation. It worked well, as organ donation was back in the main news, both in newspapers and on the TV, with Will Pope's and Bernice's story being revisited by ITV and national papers. I want to thank ITV so much for keeping organ donation in the news and helping us to promote the cause. I have a few close friends still waiting that awful long wait for transplant, because there is such a shortage of organ donors. I know how difficult, stressful and frightening it is to go through and live each day both waiting and hoping. 

Our Jack FM interview:

www.106jack.com/news/local-news/knebworth-transplant-patient-improving-day-by-day-after-two-year-wait-for-organs

Watch out for our newspaper article in my next blog.

We need to keep promoting that there is still a great need for more organ donors. Still only a third of people who would accept an organ if they needed one have actually signed up to the organ donor register. Only 4% of people give blood too, the rest of the population relying heavily on their generosity. When I had my transplant, I was given blood and I also needed to have blood platelets before they were able to remove the balloon pump that had been supporting my new heart. Again, I have been helped on this journey by complete strangers.

We finished Thursday off with an outing to Prezzo's for dinner with the family. Again, another lovely ordinary outing after a busy day and it felt good. Some days I'm beginning to notice that I've got much more energy than I used to have, another step in the right direction.

Friday morning and I rounded my week off with my first visit to the hairdressers since my transplant, an ordinary thing for most I know, but yet another big step for me, albeit I could only manage a dry cut, but I got there at last and feel a lot better for a good haircut! More normality! 

So apart from the Papworth bit and the newspapers, things felt much more normal and settled and already and so soon, getting so much closer to how life should be. When I first knew I was having my transplant, I had thought to myself I would be happy if I just got home for Christmas, but here I am having been home now for nearly eight weeks and life is getting so much nearer back to normal again. Now I've had another good clinic visit and been given three weeks away from hospital we are settling down to enjoy a wonderful Christmas. 

Yes, I am, pinching myself yet again...and dreaming about just what the New Year is going to bring, my life has been changed forever, starting with a phone call and then followed by a miracle, in just one day. What is that song? 'What a Difference a Day Makes - 24hrs!' All this, thanks to my donor and the selflessness of their family, they are always in my thoughts, the wonderful changes in my life wouldn't have happened if it weren't for them. 

If you can do one good thing this Christmas and you haven't already, please sign up to the organ donor register, the difference that can be made to someone's life is a miracle, the link is given below. 

As this is my last blog before Christmas, I would just like to say once again a massive thank you for all the support and kindness you have given me during this last few months, it has really helped me get this far. I wish you a happy, wonderful and peaceful Christmas and hope that you all have a healthy and happy New Year. For all those facing that long and difficult road waiting for transplant, I truly hope that 2014 is the year for you and it brings you your very special gift. 

A Complicated Saga

My ENT specialist at the local hospital, who I've been seeing during the last year wants to double check my right ear with a MRI scan.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                               

Oli with one of his friends (not our Xmas trout, I hasten to add!)

This 'ear' thing - and I am calling that, although I'm not sure it is an 'ear thing' - started over a year ago. I woke up one morning and when I tried to move everything was spinning and my heart rate was going at what felt like 200 miles an hour, every time I tried to move my head span and my heart went into palpitations again, so within a few minutes, thinking that my heart was now giving up and totally helpless watching me, my family rang 999.  I was taken to hospital, by which time things had begun to calm down except the dizziness and after a short stay, I came home and then was admitted for a short stay into Papworth so they could give me a thorough checking. By this time I just had a tiny bit of dizziness and after all the checking no-one could really get to the bottom of it although an inner ear disorder, mini- stroke or just my PH wasn't ruled out.

To cut a long story short I ended up going to my GP when I was left with a feeling of discomfort in my right ear and some tinnitus, indicating that it was an inner disorder after all. Eventually, when the symptoms didn't go away - and I still have them - I was referred to an ENT specialist, who after several visits to him, still can't see anything wrong with my ear, hence the MRI scan to have a look more closely and make sure it isn't something else causing it. I'm hoping and optimistically expecting they will not find anything, but at least my mind will be put at rest and I will not have to worry.

The scan will not be straightforward for me though, as it is a magnetic resonance imaging scan and I am not allowed to wear anything metal on my body. This poses a problem with my pump for my intravenous drugs that can't be disconnected and I cannot take it off during the scan, as it will be life threatening.  Papworth are therefore now involved and are liaising with my local hospital and the consultant. The specialist nurse has told me they will have to use a catheter long enough to go outside the room and because of that they will have to recalculate and alter the pump flow rate to ensure I am receiving the correct drug dosage through the lengthened catheter to keep me safe. I am hoping if I have to have this done, Papworth will do it for me , as it is going to take some skill, and the local radiography department will not have this expertise.  I am hoping they will say they can do whatever they need by CT scan and then there won't need to be all this fuss and I can get some reassurance. At the moment I am still waiting to hear news on what will happen.

Over the last few weeks and the festive period we have done lots of cooking as everyone else probably will have done and we have had a fairly quiet time, but we have had many small family get togethers as Rose was home. One of my favourite meals was on Christmas Eve, just a few days after I had come out of hospital Rob cooked a delicious gammon for the main course. He used a combination of recipes to prepare this from the BBC food website: www.bbc.co.uk/food/ham.  Rose and I had made some mince pies together earlier, just before my rush to hospital, which we had for dessert and Oli and Sarah brought some ingredients for the starter, with Oli preparing it. So it was a lovely family meal and joint effort by us all, which seemed to make it all the more special, I didn't even have to do anything as my bit had already been done earlier!

Oli's starter was a bit of a special one as he brought round a whole smoked trout, the trout he had caught himself as he is a fanatical fisherman and his friend, who owns the land where he fishes had let him use his smokehouse to smoke it for us. Oli made a delicious starter for six using about half of the trout he had prepared.

Smoked Trout and Watercress

Ingredients

half a medium smoked trout, half a prepared bag of watercress, half a 600ml carton of creme fraiche, lemon, horseradish sauce, 4 tablespoons of olive oil, 1 teaspoon of Dijon mustard, 2 tablespoons of lemon juice, black pepper to season

Method

Blend together about half the carton of creme fraiche with a few teaspoons of lemon juice and add in horseradish sauce to suit taste, mix in some small strips of smoked trout and a handful of chopped pieces of watercress.  Scatter some of the watercress on each plate and spoon on some of the 'trout'  mixture in the centre. Top with flakes of smoked trout. Dress the watercress with salad dressing - Oli used one similiar to this one found on: allrecipes.co.uk/recipes/tag-517/salad-dressing-recipes.aspx- - mix olive oil, lemon juice and mustard together - and then add a slice of lemon to the plate and season with black pepper to taste. 

Tips  

You can substitute the smoked trout with smoked salmon; I used the other half of the ingredients to make a quiche on Boxing Day to go with our family's traditional 'left overs Boxing Day buffet'. I followed a James Martin  recipe (smoked salmon and watercress quiche), again found on BBC good food website, but used smoked trout instead of  smoked salmon! 

I also used the tasty stock from the ham Rob had cooked to make some tasty soup to see us over the Xmas period. I literally just added left over vegetables from the fridge: onions, carrots, leeks, parsnips and garlic and seasoning. 

Don't wait til Xmas, these are tasty recipes for any time of year! Happy cooking!

And before you go, while you are still on your computer, if you haven't already:

sign up to be an organ donor at: www.organdonation.nhs.uk/

sign the 'opt - out' government: epetition: http://epetitions.direct.gov.uk/petitions/38220