Another week has passed and this week I've tried really hard to start getting out and about a bit more and back in the real world and land of the living. We have just done it in small steps around what I feel able to cope with, as some days are better than others still and there is a lot of medication to work around, but there are always some good parts of the day and I want to make the most of these good bits as much as I can.
So after a few days resting and catching up, following last week's couple of days in hospital, I have managed to make some short trips out to get on with the Christmas shopping and visit a few cafes along the way for a cuppa or two. We went to Prezzos for dinner one night and watched the Christmas lights being switched on in Welwyn Garden City, which are looking very pretty and festive.
On Friday we needed to go back to Papworth for some more drugs, as I have got another extra week off hospital before I go back in for a couple of days, but I didn't quite have enough medication at home to keep me going for an extra week. As this was a fleeting visit and turned out to be a gorgeous day, I decided to be a bit more ambitious and we visited Wimpole Hall, a National Trust place nearby, which we know well.
We went for lunch there and I tried to have a walk for a while, but had to give in partly because I was flagging after the early start and had already walked around a bit at the hospital and partly because it was cold and a bit windy and my new lungs really didn't like the cold air that was hitting them and it made me breathess. Luckily we had the trusty wheelchair and Rob pushed me round the gardens. They still looked pretty, although it is the end of November nearly. We took the cameras as I wanted to capture the last of the autumn before winter really sets in. I feel like I have blinked and missed most of autumn with being in hospital, so it was wonderful to just be out in the lovely sunshine, fresh air, watch the birds and see there were still lots of trees still in their golden splendour.
I also wanted to check out if I could still use my camera with my newly acquired shaky hands from using the Prograf drug. I was really pleased as I was able to manage it and it felt great to be out and about taking photographs again, just like old times pre transplant! Again I had to pinch myself that in such a short space of time and after so much turmoil, I'm back doing some of my favourite things already!
We finished off with a lovely afternoon tea and a visit to the gift shop to do a little more Christmas shopping. I don't think I've ever been so organised with Christmas. I think it's just me wanting to be organised just in case I land myself back in hospital, but more than ever I am just enjoying and savouring life and it just happens to be that Christmas time of year that I love. It is going to be a very special one for our family this year though, because of the wonderful changes that have happened in the last few months thanks to my wonderful donor and their family, I will never be able to thank them enough.
Back home again and it's time to check out my goody box from Papworth. So where am I at with all this new medication and its regime? Well there is a lot of it, mornings are very heavy going.
I start at six in the morning with tablets called Itraconzole, an anti- fungal drug, which have to be downed with a glass of cola. I must say I really don't like having to have the coke at this time of day, it doesn't go very well with all the coughing that goes with my lung problems and I would much rather be having a cup of tea, but it won't last forever, this one is just for six months and I've already done two of them! Once a week there is Alendronate, a drug to protect the bones, oesteoporisis is a side effect of the anti rejection drugs, this has to be taken at least half an hour before breakfast, downed with a big glass of water, sitting upright or standing for half an hour. I do this on a Tuesday, so I don't like early Tuesday mornings, too much drinking stuff that I don't really want to have to drink, no room for a cup of tea and it's not even breakfast time yet! Thank goodness it's only once a week and the coke will be going!
Next on, it's getting to 8 o'clock, time for the first round of nebulisers before breakfast. One is called Amphotericin, an anti-fungal nebuliser, which has to be made up using syringes, needles, water and powder from a phial. This happens three times a day, morning, early afternoon and before bed. I haven't quite got rid of the syringes and needles yet just like my pre transplant days, but this should stop after three months post transplant if I'm lucky and I've already done two months. So not long to go and this time I only have to breath it in, not have it intravenously! All the Amphotericin needs to be stored in the fridge too, so we have had to find a spare shelf in there to accommodate it. The other nebuliser is just a salbutamol one to help with my cough and clear my chest, no mixing up and syringes, you just pop a small phial of ready made solution into the nebuluser, now that's a bit better! This one is again three times a day, but hopefully due to stop very soon.
Breakfast time and it's another nine tablets, Myfenax, an anti rejection drug, Myfenax is taken again at dinner time; Valganiclover, an anti viral drug; Co- trimeazole, an anti biotic; Omeprazole, an anti acid; two calcichew, for osteoporosis, these are very pleasant - a bit like refresher sweets and then Furosemide and Amiloride, which are diuretics - yes diuretics, did I really believe I would get rid of the Furosemide? Three and a half years of it now and still counting... hopefully this is one that will be going! Every Monday, Wednesday and Friday another tablet is added to this concoction, Azithromycin, another anti bacterial drug. After this little lot follows Nystatin, anti fungal drops for your mouth and throat, these are quite pleasant, they taste a bit like Calpol! The Nystatin is taken every meal time and at bed time.
Two hours after breakfast follows the next round of anti rejection drugs, Predisolone, a steroid and Prograf. Prograf has to be taken again around bedtime, twelve hours later. So once that little lot is over and breakfast is over and done with, the day is relatively free, apart from the few remaining tablets with dinner and at bed time and the nebulisers in the early afternoon and again at bedtime, so the day gets easier as it goes on. It's surprising how quickly you get used to this little lot and it is managed with the little blue book, where you record everything down. It sounds a lot and it is, but for me it is so much easier than dealing with the intravenous drugs I used to have to have and the good thing is, it will reduce over time and get easier and on top of this I should feel more recovered from the operation to cope with it all. Also I know compared to some other transplant patients, this is really an average amount of drugs and others have to contend with much more, we are all very different in our needs and side effects of the anti rejection drugs.
So that is week seven, another good week and more big steps and better still no hospital for well over a week yet, so I'm planning and hoping for week eight to be another good one ...
