Sunday, 14 September 2014
My New Normal
We've had a busy few weeks since we got back from holiday. It was straight back to hospitals again: some appointments transplant related; some for ongoing tests for further surgery. It's been a bit full on, but it's all positive. Hospital is a very normal part of life and just has to fit in. My transplant clinic went well - eleven months and two weeks post transplant. My medication is still being adjusted, but apart from that everything is still going well, my heart and lungs are doing fine, which is great news, especially now I've nearly reached a year post transplant.
It does feel a bit like I've just jumped back on the medical merry go round once more though following our break as I've got lots of blood tests now over the next six weeks as I am dropping one of my medications to see how I get on without it. No sooner had I sorted all my blood tests out with the GP, then I got another call from the transplant nurse to tell me my white cell count has gone too low again, so I've got to stop one of my immunosuppressants again and get even more blood tests to see how things are after that. Then it is back to clinic once more after eight weeks for another MOT. I've been allowed to go two months again for now, but that may depend on how all the blood tests go.
They are also monitoring my blood pressure now as - as they had predicted - it is tending to get a bit higher. I'm now having to record it regularly and they are going to decide if I will need medication for it yet on my next clinic visit. I knew this was going to happen and I know I will be needing more medication in the near future. All these medication changes are part of the transplant process and normal.
I've got one more test to undergo for my impending surgery and then I'm back at the local hospital every month for physiotherapy before they decide what to do about It. I can't have any surgery anyway until I am a full year post transplant and I'm quite pleased that it's looking like it will be after Christmas now, rather than before, if it does happen.
I am also really pleased that I don't have to have the stomach fundoplication yet as well, as I think it would have been too much with everything else, so that's been a huge relief to get the tests for that all over and done with and I've had it confirmed in writing now since we came back off holiday that all is ok for now.
Now my stomach has tested ok, this still leaves the chronic cough problem and what is causing it. My consultant thinks it's from the problems I had in my early days after the transplant and is to do with one of the joins that was made, that healed in a peculiar way. As long as he isn't worried then I'm not either. We agreed to see how it goes and I may need some inhaled steroids if it gets any worse and more troublesome. I think for now I'm more than happy to live with this.
It is also that time of year for flu jabs. Last year I wasn't able to have it, as I was newly transplanted and the transplant team said it was far too early in the process to have it done. This year I need to have it done to get that extra protection for my new lungs. Rob and Rose are going to have it too, to help minimise the risks.
Finally, at last, I need to get my eyes tested. I was due an eye test when I got my transplant call. One of the immunosuppressants, prednisolone can play havoc with your eyesight and it is recommended that you wait six months until everything is settled before you get your eyes tested and buy new glasses. I was still having it reduced at this six month point, so had to hold off for a bit longer. So it's now time to get my eyes tested at long last, just a whole year late.
The positive thing is that my heart and lungs are working brilliantly and things are all settling down now and although there is still a lot of medical appointments, I am feeling really well.
Rob has been busy back at work in between all the hospital stuff and I've been trying to be very disciplined and get on with writing my book. September has been glorious so far and it's been lovely sitting in the garden and enjoying the late sunshine and writing away... still way to go, but I've made a good start and am getting into the swing of it.
We are also still trying to do some more positive things to try and increase the numbers on the organ donation register and have plans for a couple of things in October. More about all that another time
We've been trying to get out and enjoy ourselves in the sunshine too. I think we are always trying to compensate for all the hospital stuff and prodding and poking and unpleasant tests by doing nicer things and visiting new places. I think our life is always going to be this up, down; up, down rollercoaster and this is our new 'normal'.
One Sunday we went up to Canary Wharf in London - yes exactly just like that - no planning beforehand anymore, just getting up and spontaneously deciding to walk round to the train station, get on a train, take the underground, jump on the Docklands Light Railway and walk about 5 miles all around the docks: we visited a cafe or two, had a picnic and enjoyed all the tall ships that were in dock on Wood Warf. It was the Falmouth Royal Greenwich Tall Ships Regatta.
Rob had seen some of the ships coming in to dock from his office and I really fancied seeing them and getting some photos. He then gave me a grand tour of his office, which has some fantastic views. He has worked there during the last two years, so it was nice to see his actual workplace. Now I know where he goes when he disappears for the day!
There is no way I could ever have just gone off spontaneously like that and done that much over the past four years and that's when it dawns on me just how far I've now got during this last year.
So there's still quite a bit more medical stuff to get through yet, but we are also trying hard to make up for this by having good times, enjoying the health I'm now blessed with and trying to achieve some positive things as we go. Life is rich and full now, I think I'm getting used to my new normal and I'm looking forward to more milestones very soon ...