Waiting to be Listed September 2011

Bury St Edmunds 

Coping with the roller coaster way of life that very serious illness brings can be stressful and difficult. Some of the best strategies I have employed during all this to cope better include giving myself milestones to look forward to and aim towards and making sure that some nice things are planned to look forward to. Some of these plans might get stopped in their tracks before the event and there is disappointment, but all in all I find its a good and positive thing to have something to look forward to. During the last year we had had to cancel a holiday in Spain, a trip for Rob's birthday and our anniversary on the Orient Express, numerous dinner and lunch invites and worst of all I was in hospital for Sarah's birthday, so a quiet birthday for her as I was very poorly again. We also had to abandon the surprise 50th birthday party Rob had planned for me and our friends and family at Hipping Hall in Cumbria. It is one of our favourite places and he had booked the hotel, rooms and all for a special weekend for me. On these occasions it had been quite devastating to have to cancel one thing after another after another, every time I thought I was picking up again and getting confident to enjoy life again, my health kept deteriorating more.

Ipswich Marina

In the end you begin a slow acceptance that things will never be the same, things you took for granted you cannot do, but I always keep tryng to work around things and think,'well what can we do then?' And this way you manage to cope and start planning again, things that you think you can do. Cancelling all these things really felt nothing in the scheme things either, I was just counted myself lucky to be alive.

We were waiting for the phone call to tell us I had been put on the 'live' list, we had been told two or three days at most. Well as usual since I had become ill, I was waiting and waiting. Thursday, Friday, weekend and Monday came and went and I was waiting, waiting, waiting.... While I was in this state of 'waiting', we were looking forward to our holiday in Suffolk and Norfolk, another thing to look forward to and help us just get away from it all and get our heads around what was happening. In the end, I made a phone call as we were about to go away and I still hadn't heard, obviously this information is of major importance to me and it will be a huge step to find I am actually on the live list and officially waiting for a heart and lung transplant.

I was told definitely within the week, so off we went on holiday with our cases packed. I also took a case packed with things for hospital, I expected the call while we were away now and once you are on the list, that all important call that there is a donor can happen at any time. I had been advised to pack a bag ready. To be honest, this wasn't difficult because I had been in hospital so much during the last year, I had got in the habit of unpacking my hospital bag when I got home and re packing it again straight away ready for next time. I had learned by now that there is always a next time with this aggressive PH.

Beechwood Hotel, North Walsham, Norfolk

Beach huts at Southwold

We were lucky again, the sun shone and we worked around my illness and drugs and managed to get ourselves out and about a lot. We had a busy first couple of days and I was still in a bit of a daze that I needed a tranaplant. On the second day, I had pushed my luck and by dinner time I could barely stand up, let alone make it to the pizza place we had planned to go to. I thought I was going to pass out, although as usual I was managing to 'pass' as completely normal to the outside world. I was relieved when my dinner was put in front of me and so was Rob, he had been highly anxious about me. The food seemed to revive me enough to make it back to our hotel, but I was relieved to be back and safe.
So I am pretending to be normal, but really I know I'm a long way from 'normal'. This is brought home to me even more the next day.

We visited Southwold and I felt quite rough because of my drugs, I was flushing badly and felt cold and nauseous. We had a little walk by the beach huts, which were pretty in their pastel shades, but my legs felt weaker and weaker and we gave up and as we were near the pier, we decided to sit and watch the world go by with a cuppa and see if I could come round a bit. I watched people walking up and down the pier, marching along the prom and strolling into town. There were people from all walks of life and people of all ages. The one thing they had in common though, was that they could walk and that most of them could walk pretty damn fast at that. As I sat and watched this, it dawned on me, how ill I really was, in a situation like this I can't cope, I cannot walk very fast, I couldn't make it along the prom or up to town, let alone, as well as back again to the car. All these people with their dogs and prams, doing something that is just ordinary and everyday - walking - and I just can't do it! I will always remember this people watching moment as a time that I really accepted that I was indeed very sick and that if I had a transplant I might get that ability to do that simple thing again, walking normally, at a pace, perhaps with a dog to pull me as well as Rob marching along at my side.

Cley

At this moment though I can only dream. We manage to walk down the pier and back, but I was dizzy and the floor was spinning at me and I knew that I really need to stop and rest and that is enough for me one day. I also realised that if I am to enjoy the rest of my holiday in this lovely September sunshine and in this gorgeous part of England, then maybe I should help myself with this walking lark. If only I had a wheelchair, then I could both walk for a while and rest for a while and at the same time stay out longer and see much more. We were heading to Norfolk after Southwold and Rob made his mind up that the following morning he would drive into Norwich, while I rested and get me a wheelchair. But, lucky me, we were in Norfolk, where a lot of people retire, and there are two mobility shops within ten minutes of where we are stopping.

Beach at Holkham

A wheelchair was purchased and I got a new lease of life for the rest of the holiday. We spent another three days in beautiful sunshine, exploring the stunning Norfolk coast and I enjoyed the fresh air in my poorly lungs. Rob trained himself in wheelchair driving and he called it my chariot. We have a laugh about the chair and negotiating and manoeuvring it about and it adds to our fun. Another of our strategies to help us cope - laughing at the situation.

We headed back home, still no phone call, our mind had been taken off it for this week, but I would have to phone yet again on Monday. I made the phone call and was told I am already on the list and have been for about a week! I put the phone down in shock, speechless. Oh well, its happened, its official. Rob is quite angry, I wasn't advised as promised and he telephoned back to say so. Its such an important moment for us and such a let down we were not told. Many apologies were made and a misunderstanding had happened. Oh well, all these hospital ups and downs are becoming part of my new job!

Wells

We had a few more things planned that I was really looking forward to, my sister's wedding in early October and the PHA Conference in the Cotswolds in late October, then it would be that busy run up to Christmas. We were also making plans for some building work and decorating to be done in the house in November, in time for Christmas, better to get it done now than have to leave it for a few years after I've had my transplant. Its not a good idea to be in contact with a lot of dust in that first year or so post transplant due to infection.

Holkham Hall

Anyway, a busy autumn to look forward to, more little steps into this new future and first things first a long planned and awaited wedding to enjoy. Another milestone to look forward to.