It's July now and nine months on - I cannot believe how quickly the time has flown. I've been really lucky and made lots of excellent progress with my health over this last few months and I've managed to achieve so many things I had wanted to do much earlier than I ever dreamed. As a family we have really tried to enjoy ourselves and make the most of things while the going has been good.
During this last week or two I seem to have hit some difficulties, but I've been ready for this to happen at some point, as the effects of being highly immunsuppressed have begun to take their toll. With one problem or infection or another I've have been to and from the pharmacists, the GP, phoning the transplant team, to the 'out of hours' doctors at the local hospital and back round the houses again.
It happens - having to go to emergency doctors and A&E sometimes and is part and parcel of being terminally ill or transplanted. I've been here before several times and it is quite a stressful situation to be in. You have a major medical background that is only properly understood by the experts in that field, none of the usual services are available for at least 48 hours and as soon as you mention your condition, the poor person who has to deal with you is frightened to death!
Somehow you have to play 'doctor' yourself and try and guide them on the dos and don'ts, but you aren't a qualified doctor and you could really do with someone who knows what to do. I know many of us who have been in these situations and we keep ending up in them time and time again. I really don't know what the answer is other than to get what help you can and hope it works at least until you can get the proper help. I think we all dread it happening, I know I do.
I ended up having to go back to Papworth on Monday and my medication has now been altered temporarily to see if that will help. My white blood cell count is low and one of my immunsuppressants has been stopped just for a week so that my levels may increase again and I can fight off the problems. I've also been put back on some medication that has recently been stopped in case it is CMV virus and I'm waiting to see a specialist at the Lister Hospital too as a precaution if all this doesn't work or suddenly worsens.
So after a frought week and weekend we now have a Plan A and a Plan B and I'm hoping all this will do the trick and get me back in tip top condition. I have been warned it may take time and I'm having lots of regular blood tests to make sure everything is on track. Today has felt easier just knowing that everything is being monitored closely. I have just been resting, reading and enjoying the lovely weather in the garden after all that.
Some really positive things have also been happening too. I had a phone call from Woman and Home Magazine following winning the 'Seize the Day' competition and they have asked me to be on their panel at one of their reader open evenings in October, so I can speak about my PH, transplant and trying to make the most of life. It will be a fabulous opportunity to promote awareness.
We are also building up to National Transplant Week, which starts on Saturday. I've been working with NHSBT on some things for this. Last week I did an interview for the Weekly News magazine and this will be published this Saturday in their health section, so look out for this. On Friday I've been invited to BBC 3 Counties Radio studio to do an interview for their Sunday show 'Shrink Wrap'. I'm hoping National Transplant Week will really help to get more people to think of being organ donors and have the discussion with their families.
A real highlight earlier last week was going with Sarah to order her wedding dress, she finally decided on 'the one' and for me it was another of those milestone moments and all thanks to one very special person, my donor. These moments are so precious.
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