Up The Farway Tree

Plateauing...

The week got off to a good start with my oxygen concentrator finally being uplifted on Monday! I did phone them as soon as I was discharged but they have been waiting for my consultant to fill in the necessary forms. I was so glad to see the back of it, and its one less reminder of the pre transplant days. The man who came to uplift it was strangely excited by the fact I had had a transplant, which was nice. I have very little equipment left now. I do still have my feed pump, but I think I will phone soon to arrange uplift as my weight is definitely on the up, and my appetite is great (although I am eating all the wrong things!). In fact I phoned my CF team today to see if I can stop the medication I was put on to induce weight gain, as I don't feel I need it now. Also because the medication is more likely to make me gain weight as fat instead of muscle, which is not ideal. I am feeling a bit fed up with the fatness of my face, which is largely steroid induced but probably is partly the extra weight. My self conciousness was not helped when a neighbour kindly pointed out today that I had put on weight, as she simultaneously pointed to her face, clearly indicating that my face was getting fat. I know she meant it in a 'you look healthier' kind of way, but its hard for me to be that objective. I know there is not a damn thing I can do about it though, so I really need to get over myself. I also am despairing that the rest of the weight is going round my stomach which is expanding at an alarming rate. I'm sure I can however do something about that and really need to chat with my physio about an exercise programme, once I (hopefully) get the all clear from Newcastle at my next visit :-)

I am almost looking forward to the next Newcastle visit (a week on Monday) because I feel I can't really move forwards until I have reached that milestone. I desperately need reassurance that the rejection has been dealt with and has not returned, and I wont get that until I see the bronchoscopy results. Although I am still feeling well and there are lots of positive things (weight going up, appetite good, not really breathless etc) there are also little niggling doubts (having night sweats, although these have been present since transplant, generally more tired than i was a few weeks ago, but probably steroid related and still got an irritating cough at times, but again could be explained by sinus problems). It's hard for me to be 100% positive all the time though and I will feel so much better if I can get a clean bill of health at my next visit. Even if I did have more rejection, I would at least know what I was dealing with so am prepared to deal with whatever lies ahead. I think the other difficulty is that I have reached a plateau physically (and to some extent mentally) and don't feel I am moving forwards with my fitness or stamina. I am still taking Seb out twice a day but it doesn't seem to be getting any easier! My legs still ache and I really don't like hills ;-) My muscles would have been in a really bad way though, so I know I can't expect miracles. It is just so frustrating though as I probably can't do much more than, say, 5 years ago....but my lung function is so much better than it was then. I'm just desperate to feel 'normal' and be able to do everything someone of my age should do. Mentally, I am still upbeat and enjoying life....but yes, the novelty of what I am able to do at the moment is wearing off, and I need new challenges! Yet, at the same time I think about going back to work and know I am not yet ready....physically I don't think I am quite there yet, and mentally my head is still somewhere else entirely. I guess it's a lot for my mind to process (especially with the false alarm added in for good measure) and I am still getting my head around the whole transplant and post transplant process. It's a journey I just have to take one day at a time, and I have to try hard not to get ahead of myself. You will have realised by now that patience is not one of my virtues...

On a lighter note, Seb escaped today. For the long term blog readers, you will know he is quite the Houdini but it has been a while since he managed to break free. I was just sitting on my laptop when I heard a voice shouting 'Jacqueline, are you there?' and I found my neighbour standing at my open front door with Seb standing beside her. I immediately went to lift Seb, who realising what was happening made a run for it. Luckily I caught him by the tail end as he tried to run down the drive way. He was not impressed! In fact he proceeded to sulk for the entire afternoon and most of the evening. Apparently my neighbour had just being going out to her car when Seb trotted up her driveway with not a care in the world, looking quite pleased with himself. I mustn't have shut the front door properly and it had been blown open by the wind and clearly Seb saw an opportunity that could not be missed. It was really lucky that the neighbour was outside as goodness knows where he would have gone - we have had phone calls from various locations in the past when he has escaped as he takes himself on little adventures around town. Hopefully this will be the last time he manages to do a runner but I wouldn't count on it.

Otherwise I have had a fairly quiet week. We did have one shopping excursion where I managed to get an outfit for one of my September weddings - surely I am not expected to wear the same one to all three??!! Clearly I now need matching shoes. This is not my fault. On a positive note, I do already have a matching handbag, so its not all spend, spend, spend ;-)

The garden is still progressing and the plants in the greenhouse are still alive, which is always a bonus. My dad and uncle brought through railway sleepers today, which we are going to use to build vegetable beds. Think of all the soups I can make when I am growing my own veg! My latest soup was carrot, parsnip, apple and ginger. It wasn't mums ' favourite' but everyone else liked it, so I would say it was a success. I am also branching out on the baking front since my mum brought me my gran's old recipe book! It has hand written recipes with measurements such as 'a dod of butter' (to non Scottish readers, that means a small amount, unless its 'a big dod'). Other helpful comments include "bake in a hot oven" and "bake until ready" both of which have limited usefulness when you don't really know what you are doing ;-) I think I gave my dad and uncle a trip down memory lane when they came today and I had a fruit tart (raisins, sultanas etc in pastry pie) and 'coconut jam tarts' both of which recipes my gran used to make. I think its good to carry on traditions though, and its a great shame if such recipes like that become only memories.

I will leave you with some pictures of my garden, greenhouse and rockery...