A Year on the Transplant List

So what is it like being on the transplant list for a year? Many people have been asking me about this and especially now that I have been waiting for a long time. If you have been reading my blog so far, then you will have a feel for what it has been like, but here is a summary of my first year on the transplant list. 

Firstly and foremost another door is open for me now, should my medication begin to fail and this for starters has given me much more peace of mind to live with my PH.

Wastwater, Lake District

I expected there to be lots of dos and don’ts when I went on the list, but there are only a few. I have to inform the Transplant Team if we are going to be away from home or if I am travelling further than three quarters of an hour away and I cannot travel abroad. They need to know this so that you can be contacted at all times. I need to inform them each month on how my health is doing. The only other restriction is you are only allowed one unit of alcohol, but that is no problem for me as I had more or less given up alcohol anyway due to my illness, so you are not likely to see me getting drunk on a Saturday night!

It is also likely that I could have several false alarms, as unfortunately, sometimes when donor organs are checked, they are not healthy enough to use, so I have been prepared for this eventuality too, but so far I have been lucky and not had a false alarm. Apart from this, life can carry on pretty much as normal, with regular checks and monitoring by the Transplant Team and PH teams every three months.

In those first few days and months when you are on the 'list' you become very jumpy when the phone rings, but it doesn't take long to realise that its just usually yet another call about PPI insurance! I really have to be careful now to answer the phone politely and not to be ready to jump down someone's throat when the phone rings. I don't think it would be that good really if I were to tell the Transplant Co-ordinator 'where to get off', should that all important call come. I think one of my biggest frights was when one of Rose's friends rang in the middle of the night trying to find her in a nightclub, but I just had to laugh when I got over the shock as that is family life for you!  

Anglesey Abbey, Cambridgeshire

In those first few days, I was always worried about committing to doing things or having things done, because it might not happen if I get the call, this soon wears off, especially when you have been waiting over a year, I just try to get on with things or nothing would ever happen and life would go on hold. I always say things can be cancelled easily enough if needs be.     

When I was listed Rob decided to take a year off work to both care for me and give us some quality time together and on reflection I think this was one of the best decisions we made. We had no ties now and constraints of work that had always restricted us from doing some of the things we enjoyed. It enabled us to focus on the things that were most important to us like family and friends and concentrate on doing things I could actually do, rather than trying to do things that now were out of my reach because of my health.During my transplant assessment, I can vividly recall the Transplant Co-ordinator explaining how difficult the first year post transplant is and how if I was lucky enough to get my transplant and get through this year, then that would be the time they would say, ‘go off and do the things you really want to do.’ We laughed and talked about some of the things we would really like to do. At the same time my mind was saying I am not going to wait this long before I can try and enjoy myself. The wait was probably going to be a long one, two years or more even and there was also the possibility that my health would deteriorate again during the ‘wait’.

So we set about taking our time and focusing on enjoying life, whatever it threw at us. We couldn’t travel abroad, but luckily we live in a beautiful country and we managed to do some travelling within my limits and visit Suffolk, Norfolk, Cambridgeshire, Rutland, The Cotswolds, Oxford, Dorset and The Lake District. Some of these places we went back to several times and we saw many different places in these areas, visited museums, galleries, gardens, historic houses and tried to see all there was to see. We enjoyed staying in some lovely places and just getting out in the sunshine and taking in the views. If we didn’t go away from home, we often went out locally to visit historic houses, gardens and beauty spots and a few good pubs!

I’m passionate about gardening and although I cannot do a lot of the chores I used to, Rob helped me to make our own ‘grow your own’ part of the garden and we successfully had green beans, tomatoes, potatoes, radishes and salad, albeit the mice enjoyed some of these too! We also extended some of the borders in our garden and visited garden centres to buy interesting new plants. We are always on the look out for something new in the garden. This autumn we are busy planting more bulbs - well Rob is, I am just doing the pointing - so it will look beautiful in spring.

Silecroft, cumbria

When I used to work I always wished I had time to cook properly and experiment with new dishes and recipes, so now I’ve had my chance. I’ve really enjoyed cooking and making my own soups and having friends round to share. I want to try some baking, after avidly watching ‘the Great British Bake Off’, so watch this space!  Another thing I love, is reading and now I don’t need any excuse to rest with a good book. I’m always on the lookout for a good read and am storing lots of new books on my Kindle, there is always something new to read. I like writing too, so that's why I started my own blog.

       

Rob and I have managed to give our girls a lot of time too, we have been around for them while they did their A levels, more than we might have been when we worked. It has been lovely to be able to pick them up from a revision session or take them to school on an exam day. We have enjoyed many gatherings with our family, Sundays are best when we are all together and we cook a roast. We both took Rose off to university in Bournemouth this autumn and I was able to care for Sarah when she came out of hospital after she was rushed in with an appendicitus. All this would have been more difficult if we had been working. We have had many friends to visit and visited them back, its nice to see them during week days and not just weekends like it used to be. During this year I have met many new friends who have PH like myself, some of them waiting for transplants and some friends who have had transplants and the support from these friends has been invaluable and has really helped me. 

Well, for anyone having to wait this long 'wait', like myself, I can only advise that on days when you are well enough, try and enjoy the simple pleasures like being with your family and indulging yourself in things you enjoy the most; try and make plans for some nice things you can look forward to, then you're not always just thinking about the transplant ahead of you and when it may happen, but looking forward to something that is definitely going to happen soon if you are well enough. On bad days, well its important sometimes I think to just let yourself have a bad day, but try and do something positive too on a bad day, sometimes it may be only something little like finishing off a small chore or chatting to a friend you haven't contacted for a while. I also, just browse through that Transplant Folder too, from time to time, just to remind myself, so I don't go into complete shock when the call comes. I just know it will come at a time I least expect it to and like to think it helps me to be prepared, just a little.  
      

My year on the transplant list has given me a chance to take stock of things and learn to live with my PH, my life is full again now, but different than before; I’ve had chance to do some of the things I always wished I had more time for and the things that matter; I’ve had chance to store up some precious memories, improve my well being and get ready for that ‘phone call’ when it comes. Life has moved on for all of us and is steady again, Rob has now gone back to work part time, Rose has finished her A levels and gone off to University and Sarah has just started a new job and completed her first year of open University.      

We have said a few times and it may sound strange, ‘that life has never been better’ and in some ways this is very true. But always open to a new challenge, well I think we are just about ready for the call now, but if it doesn’t come we have plenty of plans to keep us busy and Christmas is looming …