A Miracle and My 'Annual' Christmas Trip to Papworth Hospital

Deer in winter on Dalham Estate, Milnthorpe, Cumbria

It has been a busy autumn through to winter and as the long dark nights and shorter days descend upon us and Christmas looms, I had only been thinking how I had done really well this year in only having one emergency visit to hospital and how we were coping quite well as a family with my PH and my transplant listing.

Early this month though we were suddenly shocked into the crude reality of the transplant world. One of our friends got her call, being the first of our little group who have been patiently waiting and a friend to many of us with Pulmonary Hypertension; we all waited with baited breath to see how she got on.

Lake Coniston, Cumbria in December 

For us it turned 'transplant' into real life, suddenly it became real that yes the phone call does actually happen and it is not what has now become to us, after our long wait, some mythical thing that dangles like a carrot in front of you. It made us realise just how unprepared we are: that although we have bags packed with some of the things we need there are other things that will need scrambling together at the last minute when we will probably be in a major panic; and our lines of communication to let others know what is happening hadn't really been properly thought out. So when we first heard of my friend's call these things began to spring to mind after we had got over the initial shock of her getting the call and during the long day of waiting to hear how things were going for her. For Rob, I think it made him realise just how hard things were going to be for him and the family as the wait to hear news of our friend became excruciatingly long, we could not even begin to think how hard it must be for them.

Unfortunately news unfolded that my friend's transplant was not looking very successful and hence another long, unbearable wait for news for many of us and especially the family. A sleepless night and another day passed, by which time we had begun to absorb that the risks associated with transplant that were described and drummed into us at the outset of our transplant process were indeed very palpable and were unfolding frighteningly before our eyes. I think every possible prayer was said that second evening; every possible positive sentiment, thought, vibe, intention, was sent by friends and strangers alike and in the morning we received the extraordinary and astounding news that a second donor had become available in the night and my friend was given yet another set of new heart and lungs the next day.  

Recovery is long and slow for any heart and lung transplant recipient and our friend is now making a very slow recovery and we are all still praying and thinking of her and her family.

For us, it has served to highlight both the worst and the best about transplant. The worst, that it reminded me of why I was filled with horror and dread at being told I needed a transplant - it has somehow become 'normalised' for me now, while waiting all this time, when really it is a long, long way and far removed from 'normal', with very high risks involved: the best, that miracles really happen thanks to some wonderful donors and their families, strengthening my hope and belief that my transplant will come when the time is right and be a success.

It has also made me think of the two donors involved and their families, who will be grieving this Christmas and I hope their families can in time take some comfort in the fact that their loved one has saved lives.

It is Christmas time and not too late if you haven't already to do some good and sign up to be an organ donor and tell your family:

 www.organdonation.nhs.uk          

Remember that the odds are you are probably going to need an organ rather than have to give one, but the gift of life to someone is the ultimate gift of all.  Make another miracle possible.

Rob set off on Saturday morning to get Rose back from university in Bournemouth, leaving me behind as a round trip there and back is too much for me to manage. His very words, as he left at the crack of dawn were, 'Behave yourself, you know what you are like!' By nine o'clock I was woken back up with a text to say he had arrived safely. I decided it was time to get up and sat up in bed. At this point I began to have a really bad 'turn' and felt sick, dizzy and and, just like old times, as though I was drowning and would pass out. My heart was beating far too rapidly for someone just sitting up in bed and I immediately knew something was not right. Somehow I remained very calm and told myself to just get back on the bed and lay propped up. My past experience of blacking out has taught me to get to a bed or chair if I can so as not to injure myself while collapsing.   

Luckily my mobile phone was by my bedside, as it always is in case I get the call, so I decided to just wait quietly and see if it would pass, if it didn't it was going through my mind to phone 999. I laid a while and I could feel my heart rate begin to slow down again and at this point Sarah just happened to text me, so within fifteen minutes she and Oli were down the motorway and with me. It seemed to have passed and I was pretty sure it may have been down to getting a kink in my Hickman line while I slept. So I decided no need for phone calls to the hospital and an easy day for the rest of the day. The following day I felt much better and it was a pretty normal day. 

Monday morning started off fine and after having an easy morning I just went up stairs very slowly, but by the time I got to the bedroom, it was all happening all over again, my pulse had hit over 170 but this time with no sign of any kinks or problems with the line, so we decided it was time to phone the hospital. I have had a good year, but always know that one day things will start going wrong again if I don't get my transplant soon, so for me this wasn't looking so good and was very scary. it was very reminiscent of old times before treatment. At times like this, the transplant can't come soon enough. 

Papworth admitted me straight away and I was all wired up to the heart monitor to see if they could get a recording of what was happening and this is where I stayed for the next three days. When they admitted me, the consultant told me, 'not to bank on getting home for Christmas.' A lot of my friends have said, 'it's like deja vu', two years ago this happened to me and last Christmas I had to make an emergency dash there, because of a problem with my Hickman Line. My head doesn't want to be in hospital for Christmas, but each Christmas, my body tries to do otherwise.     

After many tests the doctors were unable to pinpoint anything unusual or specific, so for now, between us, we decided I would be better at home and we would see if anything else occurred. If it does, they will take me back in and run the tests again. If there is still the same outcome they will more than likely decide it is time to increase my intravenous medication and probably take out my existing Hickman line and replace it with a new one and if they can get a recording of what is happening, they may well do a heart ablation if this shows an arrhythmia. For now they do not want to risk my health further by doing anything that may not be necessary, so at the moment I am confined to the house by Rob and the girls, who want me here for Christmas and I'm not being allowed to do very much. We have cancelled some of our plans for Christmas too, as I'm not allowed to overdo it and I don't want to risk missing Christmas with my family. 

The staff at Papworth were amazing yet again and couldn't do too much. I even got chance to speak to one of my transplant co-ordinators, who gave us lots of reassurance about the transplant operation. There were many familiar faces on Duchess Ward, although I hadn't actually been there since October before last, many of the nurses went out of their way to come and say, 'hello' and we had a bit of a joke going by the end of my stay that I always try really hard to be here for Christmas, but haven't quite managed it yet! 

So I am hoping if I take care this next day or two I will be enjoying Christmas with my family and as this is my last blog before Christmas, I would like to wish everyone who reads my blog a very merry Christmas and a healthy New Year.