Autumn and a Wonderful December and Christmas 2011

On my discharge from hospital, my GP was asked to arrange for me to have a Holter Monitor via the local hospital. This is just a device that monitors your heart rhythms and throws up any irregularities and can be useful to pick up any problems that might occur while you are going about your normal activities. I didn't really hold out much hope that anything sinister would be revealed on this, I had had countless of these in the past year or so and twelve years ago had even had a device implanted near my heart to try and get a reading of what was occurring. I had this device in my chest for two years. Nothing substantial was ever found, despite the growing disease in my lungs and the dilation of the right side of my heart.

This was duly arranged and six weeks later I had the monitor attached. Unusually they took an ECG recording first as a base line and just as I laid down, my heart began to race quickly. I had been sleeping more or less sat upright and propped up by pillows since the dizziness began and I don't think my body liked having to lie flat. Well at least something might be recorded for the first time ever!

Nothing else happened while I had the monitor on and it was duly returned, more car parking, car parking fees and a traipse through a maize of long hospital corridors- well for Rob at least, it wasn't necessary for me to go with him this time, so I didn't.  I was sent an appointment for the follow up for early December. All this was taking a long time in my ideal world and the event had passed and gone really, but it probably was reasonably quick by NHS standards and in the real world of hospitals.

Xmas shopping in Stamford

Autumn came and went and I spent the next three months or so sleeping sitting up, propped by pillows, I was still getting dizziness and was having some incidents with palpitations occurring when I needed to get up in the night. They felt relatively mild and I didn't relish the thought of being whisked back in hospital only for nothing to be found, so I was frightened when they happened, but they always passed after a moment, so I decided to just monitor the situation. At my next outpatients appointment, I mentioned this was happening and it was explained that when I have been asleep and laid down for a few hours, it is a big strain on my heart when I then try to get up and it will make it beat harder as though I have been exercising. I felt reassured to a point, but these loud throbbing heart beats and my heart racing began to remind me of when I used to pass out.

At times I felt extremely weak when getting out of bed and moving, making me feel unsteady on my legs they felt so weak, and then the heavy beating would start up again, making me scared it was going to end in a faint, which would mean my heart wasn't coping again. I worried in the back of my mind that the PH is beginning to deteriorate. So during Autumn and over Christmas I went to bed every night, having to sleep almost sitting up and being frightened of the night, because all these symptoms seemed to be at their worst then. It was a good feeling when I woke to daylight in a morning and I had got through what seemed yet another long dark night. At night time, Rob is always sensitive to my movements. He wakes without fail if I am awake and he is always there to help me. It reminds me of the days when the children were little and we were always tuned in to hear them if they roused at night. Rob offers his never ending support to me twenty four hours a day. It is a great relief to me, I don't think I would even sleep at night if he wasn't with me every step of the way.

There is always a sense that I have made it through yet another twenty four hours as well, when I wake up in the morning, having had no phone call from the Transplant Team. We are trying hard to act normal and do normal things and make the most of life, planning outings to look forward to and planning for Christmas, but never far away is the thought of the actual transplant, what it will entail, what the outcome might be. What we will have to go through is never far away, and could be as near as a few hours away or as long as two years or so away or might ever even get to happen.

Uncertainty is our future at the moment. Uncertain when the transplant may happen - will it be sooner or later? Uncertain if it may happen at all - can I live long enough if it takes a long time? Uncertain if my PH will stay controlled - can I remain stable and maintain this same quality of life? Uncertain how the transplant may affect me - will I be a lucky one, who manages and copes with things with minimal problems or will I struggle and end up with a worse quality of life than before? Uncertain where all this will end - will I have the worst case scenario and not survive or even make it to transplant? All of this and then there is going to be the burden of knowing that someone else has lost their life to help me, some other poor family will have to suffer grief and loss, while my family may have huge relief and a new lease of life. How will I handle this?

The only thing I can do to cope with all of this is just take one day a step at a time and get through it and make the most of it. At the moment I do not have a clue what will happen in the future, so I can only control what is immediately happening, so that is the best thing to focus on. I find it better not to dwell on the transplant, but at the same time remind myself of it and what is going to happen so that I will not go into complete shock when the time arrives, if it does. I have a transplant folder, which describes the procedures and drugs and possible outcomes, from time to time we just browse through this to refresh ourselves, all of us, so we are prepared when it happens. It is inevitable that waking up feeling unwell every single day, day in day out, dealing with the drug regime and all that brings, together with the uncertainties ahead, brings moment when you feel sad, depressed and down.

For me, I feel its important to have a little cry here and there and have a little wallow now and again as it is important that these feelings are released. But it is equally important to me that I don't waste this borrowed time I am on and it is best spent making most of what I have and enjoying what I have got, so most of the time I am still able to pick myself up and get back on with things. I know that I manage this with the close support of Rob and my girls, who are full of understanding and love. Some of my friends are never far away either and come to see me or meet up regularly with me. With all this support, it is difficult to stay down for too long.

Winter in Knebworth 

It concerns me I still have a lot to go through yet and a lot more illness and hospital ahead of me, so I do not discount having some professional help at sometime to help me through. The palliative care nurse at Papworth always sees me on my visits there to offer help and support and I know she will be there if I need her. Just knowing that there is this support is available helps me too. I also try and focus on all the positives having the transplant may bring and day dream about swimming and travelling again. When people ask me what I will do when I've had my transplant, the reality is that all I really wish for is wake up in the morning and feel well, all I want is to be able to fulfil a day as a fit person, that I will tire from being busy not sick, the rest of the dreams will follow and become a reality if this ever happens.

During this autumn period, the PHA Conference is being held. This is both a fun and sociable event as well as being informative about PH and the developments being made to treat it. Anyone whose life has been affected by PH is welcome to attend and Rob and I have booked to go. Funnily enough it is being held in the Cotswolds at Heythrop Park, which used to be our staff training centre when we both worked for NatWest. We are curious to go for this reason as well, we both had fond memories and it is a stunning building in beautiful grounds. It will be interesting to see what it is like now. We are also looking forward to meeting people again we have met through Papworth PH Matters Support Group and friends I have made on PHA Forum.

Unfortunately, the conference is only two weeks after my wedding escapades in Lancashire and I have not long been discharged from Papworth and still feel dizzy and unwell, I decide I would rather not be away from home again or have to make the journey there. I'm still not fully recovered from it and mentally it is going to take a lot of strength to be away from home again. I do not relish the though of visiting yet another A & E so soon. It is disappointing, but as we said to the conference organisers when we rang up to cancel, it is part and parcel of the job of being ill, sometimes you just have to be disappointed and then think of new plans you can make.  

Following the conference, we had a sad day for our PH community, the inspirational young man, who had supplied me and many of us with our specially designed bags, which conceal our pumps and catheters, died at the age of thirty. He had been diagnosed with PH at aged nineteen and had survived eleven years with his Hickman Line and pump. He had been assessed for lung transplant some time ago and at that time he was too well, which was probably good news for him then, but he deteriorated and was sent for assessment again. Unfortunately this time he was too poorly to be listed. His story really brings home to me how important and short the window is between being 'too well' or 'too sick' for transplant and timing is key.

Whenever I question that perhaps I'm doing all right as I am for now and should I really be risking putting myself through transplant, I remind myself of him and know I am in a lucky position to have been given this opportunity. I know that had he been given it, he would have grasped it to the full and so would my other two friends who had lost their lives and battle with PH. I have met five other people on the Epopostrenol  medication so far, making six of us. To date, three people have died and to my knowledge the other three of us are alive. This awful fact seems to resonate with the data I have been given by the Transplant Team on survival rates: only fifty percent of patients surviving on diagnosis and treatment. I know that I have to try and stay in the correct fifty per cent, therefore transplant has to be my only option.

What have they done?

We had building work planned for November, which was a little arduous for me when I felt unwell. We had new electrics and doors fitted throughout the house, which creates lots of dust and mess in every downstairs room. Everything had to be redecorated and the whole house was completely upside down. I think it may have been easier to move house. The dust and mess being created wasn't really ideal for my lungs, but we had reasoned it would be better to get it all done now as when I have had my transplant, I have been advised to avoid building dust and mess due to the infection risks they pose. We reckoned better to attempt now or it would be years before we might be able to get things sorted. This time felt like extra pressure, pressure and stress due to the builders invading our home and added to that if I got the phone call during the beginnings of the work, I might be coming home to a lot of mess, which wouldn't be possible. There would be massive burdens on Rob and the girls if this so happened. So a self inflicted gamble that the call will not come in November.

House wreck

As we got half way through the mess of it all, I felt more relaxed that if the call came now, the work would be done before I was back home again. There would still be added pressures for the family though if it happened. Many people may think what on earth were we doing planning this when we have my illness to contend with, but I believe life has to go on as normally as possible and I was able to do lot of resting in between the chaos, which helped me cope. It was a great relief when it was finished though and well worth it with the downstairs newly decorated. We have to spend a lot of time at home because of my illness and again, I am fortunate and blessed that I have a lovely home and can enjoy my comfortable surroundings while I feel unwell.        
    
December arrives and it feels quite an emotional time for Rob and I, it was at the beginning of last December  that I was rushed into Papworth as an emergency and I was put on the intravenous drugs, I had been very unwell for most of that month and only discharged on Christmas Eve. This year I was counting every day I was at home in December as a blessing. The whole house was decorated for Christmas early, me having a main helping hand this time with all the preparations and we had lots of friends round to visit. This year was going to be a perfect Christmas.

Celebrating an early Xmas with Rose

The only person missing would be Rose, who was off to Uganda for a fortnight with school. This was an incredible opportunity for her, one she shouldn't miss for anything in the world, so I was perfectly happy at the prospect of a Christmas without her. When school broke up, Rose got off to and arrived safely in Uganda. We decided the time was right for me to try again and go away for a few days back to our cottage in the Lake District. It is home from home, so I knew I would be fine as long as I stayed well. My follow up appointment for the results of my Holter Monitor recording at the local hospital had been cancelled until January, so there was nothing stopping us now.

Deer on Dalham Estate

Christmas in the Lakes is always beautiful, we have gone every year at some stage over the festive period and this time we were going to stay a week, until just before Christmas Eve. Sometimes, it is snowy and icy here at Christmas and the stunning scenery can take your breath away. If it isn't, it doesn't matter as it is all roaring warm log fires and twinkly fairy lights in the pretty villages and you can relax in beautiful surroundings with some delicious food. There are lots of pretty gift shops and organic food shops to do that last minute bit of Christmas shopping.

My excitement overrides my fears and anxieties about the trip.    

View on a drive to Coniston