Wednesday, 6 March 2013

Another Milestone...Sarah's 21st

Big Ben glistening in the early morning sun
Ready for a London Marathon!
It is about two and a half years ago that I was diagnosed with Pulmonary Hypertension and following that diagnosis things began to deteriorate quite rapidly, the medication didn't seem to be getting a grip on my illness and exactly two years ago I was referred to the Transplant Team.

London Eye
Two years ago they were desperately trying to increase my intravenous medication Epoprostrenol, I had been established on it a few months prior to this, but it still wasn't working efficiently enough and I was still having severe symptoms of PH, which in my case meant passing out trying to do the simplest of tasks, because my heart wasn't strong enough to cope with the extra pressures it was dealing with. They were not having much luck though and it was a stop, start process, with the medical team trying to increase the drug dosage and my body not tolerating what they were trying to do. I can just remember it feeling like an endurance test or torture as they increased the dose each time.

Nelson's Column
Eventually the doctors gave up and decided I was unable to tolerate any more and it was time to change tactics, as they hadn't managed to reach my target dose. I knew I had done my best and they decided to try an oral medication, Sildenafil, and the cycle started all over again and in the end I just had to discontinue taking the oral drug too. Unfortunately I had an unusual and bad reaction to both  drugs, but eventually things settled again, I was able to take the Sildenafil and get myself into a safer place with my PH and was given medication to help with the side effects. This was a huge turning point as I began to stabilise and now after two years of stability, with a few blips along the way, I can look back and know I have been one of the lucky ones.  

When all that happened, to say I was shell shocked is a huge understatement and although I remember trying to be as optimistic as I could in the circumstances, there were times when dark reality took over and I had to face and confront the fact that I may not get to see some of the things that people normally just breezily accept in life. Rose had just had her seventeenth birthday and Sarah turned nineteen while I was back in hospital. I didn't just have to face the fact that I was now missing out on my old and simple daily life, but things flashed in front of me, such as the girls reaching eighteen and twenty one, them graduating, them getting married and them having their own families and me becoming a grandparent. The bigger milestones in life that you expect to see were being taken from my grasp and I felt like they were slipping completely out of reach at some low points. At the same time I was still trying to find strength and was opening my arms out wide to snatch them back. I was still hungry for life, whatever was happening to my body, I wasn't prepared to let myself stumble further away from all that I loved in life.  

Weekend brought one of the milestones I could only of dreamt of two years ago, as Sarah turned twenty one on Saturday. We all celebrated together as a family. We had planned a surprise get together in London and we all stayed over. Unbeknown to Sarah Rose came all the way back from Bournemouth, David came back from Exeter, and we all travelled in to London ready to surprise her at dinner time. Oli had taken her for what she thought was a weekend away and she had no idea that we would all be joining them on Saturday night. He did a sterling job at covering up the surprise. I think he had a few hairy moments, where he had to tell a few white lies and at one point she was locked in the bathroom while Rob and Oli conspired at their bedroom door! It was a lovely moment in the bar when she came down ready for dinner and we were all sat there, the look on her face was priceless!

Covent Garden
We had a fantastic weekend and for me, well I had to keep pinching myself that I have managed to come this far and not only was I well enough to enjoy everything, but I had been well enough to dare venture into London and celebrate Sarah's birthday in a special way. Everything seemed magical to me, the birthday celebrations, being with my family and their loved ones, the sun shining on us as it did for once, the buzz and life of London. I savoured everything. The weather being so good enabled Rob to push me for miles in my wheelchair and we managed to visit the National Gallery and The Tate Modern, explore Westminster, St James Park, Trafalgar Square, Covent Garden and Southbank. I love exploring big cities and London is a special one for me, vibrant and teeming full of life and promise.

View from Southbank across to St Paul's

Horse Guard's Parade
So, this far in my transplant journey, I know I have been one of the lucky ones, managing to cope with my illness and all it brings, but managing to stay well enough and keep the severity of my illness at bay while I wait. I know it's a fragile situation and things could change any minute, so I know I have to make most of very moment.

Low Tide on the Thames
As I have been lucky so far, my thoughts are with those who haven't been so fortunate, those who have waited on the Transplant List and lost their battle, while I have been waiting 535 days, 1605 people will have lost their lives while waiting for a transplant. My heart goes out to all their families. There are also those who are not well enough to go through transplant too, something I know could have easily happened to me.

I've also been thinking a lot recently about all the courageous people who have signed up to be donors and especially those who have lost their own lives and with their families have given the gift of life to others. Without donors and their courageous families, those of us who are on the Transplant List would have little hope. It is the strength of those families and knowing there are families who are so willing to give that brings great comfort to us when times feel tough.
Early evening view across the Thames to Westminster

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