Latest Clinic and Bronchoscopy

I started off the week with another clinic visit and yet another bronchoscopy. Fortunately all went well - there is always this sense of worry in the back of your mind that they will find something isn't quite right or something has deteriorated - and I was able to come home really pleased and relieved once more.

All ready and waiting to go to theatre! Wrapped up warm, it's freezing in there!

The Transplant Team have been paying particular attention to a join they made in my windpipe during my transplant operation. This is taking time to heal and they have been worried about the way it is healing, as it looks like it may possibly cause some narrowing in one of my airways to the lung. Over time this narrowing could worsen and cause the function to decrease in one of my lungs. This is quite a common problem after lung transplantation and there are various remedies to stop this happening and keep the air way open such as: stent procedures, placing a small 'balloon' in the windpipe or actual surgery. They have been examining and monitoring this join regularly, hence all the bronchoscopy procedures I have had, but they have now said they think it looks much better and they won't need to watch it as closely now or do anything about it as yet. That was a huge relief and I was delighted at the news.

Arriving back!

They also wanted to check how this particular problem was doing before they could make a decision on reducing more of my medication and as they are happy with things for now, I was able to stop taking another of my medications, Itraconazole. This is an anti fungal medication and it is yet another one of the tablets I haven't been that keen on. You have to take it around six in the morming before you have eaten or drunk anything, so your stomach is still acidic and you have to take it with an acidic drink such as cola or orange juice. I started off taking it with cola, but big tablets, fizzy drinks and six in the morning didn't work very long for me, and together with a cough this routine began making me sick and nauseous. So I then tried with fresh orange, this worked better, but still wasn't brilliant. I don't mind a glass of fresh orange, but not as my first drink at six in the morning with two huge green, plastic looking tablets! So I was delighted when they said I don't need to take this anymore - now I don't have to wake at six if I don't want to, I don't feel nauseous after forcing tablets and drinks I don't want down me and I can just have a normal cup of tea when I wake up if I want to! More normality!

Time for a sleep and a bit of the old oxygen to help along the way!

In my mind it is also one drug less in the many I have to take and the less I have to take, the better. There is only one little drawback at the moment though in that withdrawing the Itraconazole, it may disrupt my Tacrolimus levels. Tacrolimus is an anti rejection drug and has to remain within a certain range in your blood stream to be effective. The range is calculated on your weight and regular blood tests are undertaken to ensure the correct levels of tacrolimus are maintained. So I now have to go back to going to clinic once a week again while the team monitor the effects on my Tacrolimus levels and get them nice and steady again. This doesn't worry me though - it is a small price to pay to come away from clinic and be given a clean bill of health - and it is part and parcel of getting steady and stable and even better post transplant. 

I was lucky enough to meet another lung transplant recipient on this visit, who was twelve years post transplant and doing really well. She had also had similar 'windpipe' problems to me, which had now been fixed. That was so encouraging for me and gave me lots of hope for the future. 

I have met many transplant patients now with positive stories to tell and I'm starting to think, 'My goodness, can I really begin to think further ahead to a long term future? Perhaps I can!' Twelve years on for me and I will be thinking about my pension and what should have been my real retirement! I had stopped worrying about pensions and what would have been a 'normal' retirement long ago, but maybe now I'm going to have a rethink! Well it's a good problem to have worry about! 

View from the ward. Is that my pension pot at the end of the rainbow or just a pot of gold?

Meanwhile, Rob has become something of a local celebrity. Every time he pops down in to our village, people are asking him how we are doing: he has been stopped in the butchers, the newsagents, the chemists and the doctors. The newspapers and local radio have obviously done a good job!