No one can deny that the first half of 2014 hasn't been my best. It started off badly and has steadily got worse so it's time to kick out the demons of the past and move on. To do that I need to recap and get it all out there, so stick with me, this isn't going to be pretty but it will be worth it in the end, I hope.
January started with a cold and a persistent chest infection. I seemed to live in the GP's and felt really sorry for myself. On top of that my Flolan wasn't being as effective as it had and I seriously needed an increase in dosage. Also because of the Flolan I was still feeling and being sick at frequent intervals. Then I was offered a sliver of hope, a new drug called Veletri. This would give me more time, as it was less preparation intensive, and would hopefully make me feel better, as being stable in air the effects should be constant, not tail off over the course of twelve hours as the Flolan did. This bit of hope was swiftly taken away by one selfish idiot on the panel who approve drugs for patient use so I was back to waiting, I felt down.
The drug did not materialise in February or March either and my health continued to fail along with my usual optimism and my hope for transplant. I knew I was in trouble when I started to miss days at work simply because I was too tired to drag myself out of bed.
April arrived and I'd finally managed to shake off the chest infections and then a minor miracle happened. I got a call from the hospital telling me my drug had finally been approved and could I go in the following week to get it. Could I? I would have crawled on my hand and knees that very day if it meant feeling better. Anyway crawling wasn't necessary and I was soon sitting on a hospital bed preparing the new drug under the watchful eye of my nurse specialist. After waiting around for a few hours to make sure there were no ill effect, I am notorious for being allergic to almost everything, I was sent home. The immediate effects were obvious, only having to prepare my cassettes once an week meant I had loads of free time in the evenings. Sometimes I'd fly into a panic thinking I'd missed my drug prep. After three years it took a long time to get used to not being tied to the table for an hour every night.
April also saw a turning point in my transplant wait. This time, during my regular visit to Papworth, I saw the top man and as I was still on the downward slide at the time he was not happy that I'd been waiting so long, sixteen months at that point, so decided to do something about it. I was to be tested again to see if it would be possible for me to have just a lung transplant. There would be more risk but at this point the extra risk outweighed the risk of doing nothing. I was to be given more detailed antibody testing to see if any could be eliminated, and scanned to see if my heart and my plumbing would stand up to the more complex lung transplant. I was to return six weeks later for the results.
May arrived and I was feeling happier.My health had improved vastly under the new drug, really this shouldn't happen because it is essentially the same as Flolan but with a new formulation. Obviously this new formula suited me much better. I felt less nauseous too and realised my appetite had improved when sitting in Burger King and finishing off my burger, my chips and some of Peter's too. At last I started to regain the weight I'd lost and soon hit Papworth's target of eight stone, a weight I have managed to maintain. I also felt a bit happier that moves were being made to widen my donor pool and improve my chances. Then a big miracle happened, I got the call. We all know what happened there and I was plunged back into despair.
Being me I handled it the way I always did, I couldn't face what had happened, and I really couldn't deal with it right there and then, so I returned to work. It didn't take me long to realise I'd made a big mistake. The sorrow and distress of my lovely colleagues was so much harder to cope with than my own. I don't think I've ever been hugged so much. Then on Tuesday fate decided that wasn't enough and stamped on me again. I woke up covered in blood and was rushed to the Brompton where they discover my two way connector had split. This was replaced and after a few hours to ensure no real damage had been done and I wasn't suffering any ill effects, I was sent home and told to keep and eye out for infection over then next few days. On the way home my pump began to alarm so, being only ten minutes from my home we continued our journey and phone the hospital. I was rush back for the second time that day. I'd developed a blood clot in the line. By the time I reached the hospital I'd managed to clear the clot myself by forcing the medication through. I was kept in overnight and sent home with a clean bill of health the next day.
This time I did not return to work. I was exhausted, I can never sleep in hospitals, and the reduction in medication, they'd worked out that I had not been getting my correct dose for over ten hours, had left me breathless. I was ordered to stay at home until my breathing returned to normal.
Three days later I was back in Papworth to get the results of my tests. I was suitable for just lungs so, although I was prioritised for heart and lung with an option of just lung, I was now swapped over with the priority being lungs. It will be risky but the time has arrived where I cannot wait much longer so it has to be done.
I left Papworth with very mixed emotions, OK my chances had improved but what if that call was my only chance. I decided not to think about that and did what I do best and returned to work. It was not a good idea. My mind is clearly on something else. I'm snappy with callers, I have no patience and I'm forgetful and my concentration has gone to the wall. This of course distresses me more because I've always tried to do any job I've had to the best of my ability and right now I'm not able to do that.
So I've done what I should have done from the beginning and taken time off. To be fair I'd booked these two weeks last year but they couldn't have come at a better time. I need to take time out and just think things through. I can't let go and move on until I face my situation and deal with all the emotional fall out. Only then will I be able to pick myself up and prepare myself for what the future holds. I'm sincerely hoping the second half of 2014 will be better than the first. Surely, surely I'm due a break, hell more than a break, some good luck for a change.
July here I come!
The drug did not materialise in February or March either and my health continued to fail along with my usual optimism and my hope for transplant. I knew I was in trouble when I started to miss days at work simply because I was too tired to drag myself out of bed.
April arrived and I'd finally managed to shake off the chest infections and then a minor miracle happened. I got a call from the hospital telling me my drug had finally been approved and could I go in the following week to get it. Could I? I would have crawled on my hand and knees that very day if it meant feeling better. Anyway crawling wasn't necessary and I was soon sitting on a hospital bed preparing the new drug under the watchful eye of my nurse specialist. After waiting around for a few hours to make sure there were no ill effect, I am notorious for being allergic to almost everything, I was sent home. The immediate effects were obvious, only having to prepare my cassettes once an week meant I had loads of free time in the evenings. Sometimes I'd fly into a panic thinking I'd missed my drug prep. After three years it took a long time to get used to not being tied to the table for an hour every night.
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| Webs covered with early morning dew |
May arrived and I was feeling happier.My health had improved vastly under the new drug, really this shouldn't happen because it is essentially the same as Flolan but with a new formulation. Obviously this new formula suited me much better. I felt less nauseous too and realised my appetite had improved when sitting in Burger King and finishing off my burger, my chips and some of Peter's too. At last I started to regain the weight I'd lost and soon hit Papworth's target of eight stone, a weight I have managed to maintain. I also felt a bit happier that moves were being made to widen my donor pool and improve my chances. Then a big miracle happened, I got the call. We all know what happened there and I was plunged back into despair.
Being me I handled it the way I always did, I couldn't face what had happened, and I really couldn't deal with it right there and then, so I returned to work. It didn't take me long to realise I'd made a big mistake. The sorrow and distress of my lovely colleagues was so much harder to cope with than my own. I don't think I've ever been hugged so much. Then on Tuesday fate decided that wasn't enough and stamped on me again. I woke up covered in blood and was rushed to the Brompton where they discover my two way connector had split. This was replaced and after a few hours to ensure no real damage had been done and I wasn't suffering any ill effects, I was sent home and told to keep and eye out for infection over then next few days. On the way home my pump began to alarm so, being only ten minutes from my home we continued our journey and phone the hospital. I was rush back for the second time that day. I'd developed a blood clot in the line. By the time I reached the hospital I'd managed to clear the clot myself by forcing the medication through. I was kept in overnight and sent home with a clean bill of health the next day.
Three days later I was back in Papworth to get the results of my tests. I was suitable for just lungs so, although I was prioritised for heart and lung with an option of just lung, I was now swapped over with the priority being lungs. It will be risky but the time has arrived where I cannot wait much longer so it has to be done.
I left Papworth with very mixed emotions, OK my chances had improved but what if that call was my only chance. I decided not to think about that and did what I do best and returned to work. It was not a good idea. My mind is clearly on something else. I'm snappy with callers, I have no patience and I'm forgetful and my concentration has gone to the wall. This of course distresses me more because I've always tried to do any job I've had to the best of my ability and right now I'm not able to do that.
So I've done what I should have done from the beginning and taken time off. To be fair I'd booked these two weeks last year but they couldn't have come at a better time. I need to take time out and just think things through. I can't let go and move on until I face my situation and deal with all the emotional fall out. Only then will I be able to pick myself up and prepare myself for what the future holds. I'm sincerely hoping the second half of 2014 will be better than the first. Surely, surely I'm due a break, hell more than a break, some good luck for a change.
July here I come!
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