Up The Farway Tree

Sugars, scones and pink nails!

I had a bit of a tired day yesterday and found myself struggling when I took Seb for a short walk. Impatient as ever I was really quite upset about this and felt like I wasn't moving forwards at all. I did however later discover that my blood sugars were really quite high, which probably explains why I felt so tired. It may have been something to do with the scone and jam and coffee with 3 sugars that I had earlier in the day ;-) It's hard trying to get the balance between controlling my blood sugars and gaining weight. When you have CF related diabetes you are told to continue with a normal diet and adjust the insulin accordingly because it is so important to keep you weight up. I'm not entirely sure if that rule still applies now I am post transplant, but I do still need to put weight on, so for the time being scones are still on the menu. The CF nurse has taken a note of all the blood sugars I have recorded and is going to show them to the diabetic nurse for further advice. I probably just need to start taking some insulin with snacks as well as meals, which shouldn't be too much hassle.

I also got some feedback on the peg tube situation. The CF consultants both agreed that I could remove the peg tube, however they also ran it past the outpatient clinic at Newcastle (who are now responsible for my care) and they were not keen for it to be removed. They felt it was far to early at this stage and should I have an episode of rejection or infection I may need the peg tube. They were also concerned that at the moment I am still underweight and need to put on at least 4kg to be at my target weight. I was really upset about this as it really is causing me a lot of discomfort. It become really painful when I am walking and is also waking me up several times during the night. It is in fact much more painful than my wound, which just seems counter productive to me. Newcastle did say that they cannot stop me removing the tube, but I feel if I do that I will look reckless and non compliant, and I don't want that to be their first impression of me. My plan at the moment is to suffer it until next week and discuss it with Newcastle team when I am down for my bronchoscopy. I am willing to use an NG tube if necessary for overnight feeds so hopefully I can convince them that it's safe enough to remove the peg. Fingers crossed.

Today I was less tired and managed a bit more. In fact I took Seb out twice! Just for short walks, but hopefully building up my stamina slowly but surely. He couldn't really believe his luck when I shouted walkies for the second time -he almost looked at me with utter disbelief. It's all very novel for him at the moment and he gets a bit overexcited about me taking him out. I'm sure this will wear off soon. My legs are also aching from climbing my stairs, which just shows how unfit I actually am. I don't think I had appreciated how much I had deteriorated during the 2 years on the transplant list. I still can't do as much as I could when first listed, so that tells me that the biggest things holding me back is the fact I am seriously out of condition. This is something that will improve gradually over the coming months and I will just have to work hard and stay focused. Already the stairs are starting to get a bit easier and I'm sure it will be no time at all before I can run up them. Maybe!

This afternoon my friend came over and we had a good catch up, which mostly consisted of me talking a lot. I'm just making up for lost time. I think she noticed a big difference in me, even with simple things like how I used to lean forward on the kitchen worktop while making coffee because I was so out of breath, but now I can just wander about the kitchen effortlessly. It's interesting to hear these things, as sometimes it can be so subtle that I don't notice the differences myself. Speaking of differences, something else I noticed is how pink my nails are! My nails, especially my toenails for some reason, were usually a dusky blue but now they are nice and pink and healthy looking. Simple, yet so significant.

I am thinking about doing a post explaining more about transplant and what this means for me. People have been asking questions such as 'do these lungs have CF?' 'will I still get chest infections?' 'can you get a second transplant?' I will try and answer some of these questions, so if you have any others (no matter how daft you think it might be) please leave a comment and I will do my best to answer them. This idea came from someone else's blog, but I thought it was a good idea so I am stealing it;-)