Up The Farway Tree

New Beginnings

Tuesday morning was spent making hundreds of phone calls trying to arrange uplift of all my equipment and try and arrange bloods tests and prescriptions. The chemist picked up all my portable cylinders but the oxygen concentrator company need permission from my doctor before they will arrange uplift! The CF nurse came and collected all my IV medication and old nebuliser (I have to use a new one in case bacteria are lurking in the old one). The wheelchair is getting uplifted in a couple of weeks and then I'm only left with the stair lift and bath board. I won't do anything hasty about the stair lift as any episodes of acute rejection or infection could leave me very breathless so it might be needed. I also don't really want to give the bath board back because it's great for shaving your legs, and Andrew likes it to put his shampoo and shower gel on ;-) It's a great feeling to gradually get rid of all these reminders of my life before - hopefully they will all be gone in the next few weeks and I can really have a fresh start.

In the afternoon mum and I took Seb to the local country park. He loved it! So many smells and new things for him to investigate. We just did a short walk round the pond, but it was great to get out in the fresh air and enjoy some nature. When we returned Seb collapsed in a heap and went straight to sleep - must have been hard work doing all that sniffing. He is being very sooky at the moment and on his absolute best behaviour. I wonder if he thinks we sent him away for being naughty! I'll try and enjoy the good behaviour while it lasts..

Yesterday I had to get bloods checked in the morning so the GP came out to do this. It was great being able to get up, showered and dressed and still be ready first thing. Not having physio to do is making a huge difference to my mornings, as is the fact I just have a wee bit more energy so can get myself organised that bit faster.

In the afternoon I dragged mum to the garden centre again. I wanted to buy a flower or tree to plant in memory of my donor. I was looking for something that would flower around the time of her anniversary. I eventually decided on a beautiful evergreen azalea which had bright cerise flowers in the spring. I got a lovely big granite pot for it, so I can take the plant with me should I ever move house. I also bought some other bits and pieces and poor mum had to push this huge trolley around while I sauntered around shouting instructions. Shame I can't lift anything heavy ;-) I saw a bird table I wanted (been looking for ages) but there was no way it would fit in the car, so when Andrew got back from work I insisted on going back to purchase the table, as he can fold the seats down in his car. I may also have purchased a bird bath (the old one blew over and shattered). Andrew continues to be worried about my spending since the transplant. To be fair I had kept birthday money for the bird table, although I hadn't budgeted for the bird bath. You have to live a little though..

The main problem I am having at the moment is with my Peg tube. For those who have followed my blog since the beginning may well remember me talking about this before. The peg tube is small tube that goes directly into my stomach and was used for overnight feeds to give me extra calories. I have had problems intermittently with this tube, where I get severe pain in the surrounding muscle. It is brought on with walking, so I think it has flared up because I am now more mobile. The pain is so bad that it stops me walking any further and is also waking me up several times during the night, despite the fact I am still on strong painkillers for my wound. I have asked the CF team if I can have it removed and they will discuss it today. The main issue with having it removed at this stage is the fact I need to put some weight on and have not proved that I can do this with eating alone. I did however suggest that I could use a nasogastric tube if I needed to feed a couple of nights a week for extra calories. I feel so frustrated that I should be exercising but am actually being limited by this. It seems counter productive to me. Anyway, I will let you all know what the outcome is!

p.s Seb says woof woof to Daisy and he agrees that horse poo is rather lovely ;-)