Up The Farway Tree

Back to Reality

Last week was busy busy, so had no time to post again! New Years day was lovely and Anne and John stayed with us for further celebration. We were a bit too tired for more sing star though....maybe not a bad thing ;-) The 2nd January is a big family gathering at my Uncles and was also a great day. I wasn't well enough to go last year so it was great being able to join in this year, especially with all the games! On Saturday we went into to Edinburgh to have lunch with my friends Claire and Giuseppe and had a lovely afternoon.....then of course I found out we were minutes away from a shopping centre so we had to make a wee detour. Christmas money is now spent :-)

We then headed back home on Sunday with a large proportion of the day spent packing up the car, then unpacking at the other end. It is always strange coming home to the Christmas tree, another pile of cards behind the door and all the decorations. We had one last night of Christmas tree lights before taking everything down on Monday - Seb is pleased because he can now see out the living room window again haha.

I also had a pile of appointment letters sitting - ultrasound for foot next Friday, appointment for surgery this week and an appointment at pain clinic yesterday (just as well we were back home or I might have missed that!) The appointment was in the city centre so Andrew had to come with me as there is no parking - bit awkward really. Anyway the consultant was very nice and listened to the whole story about my facial (?sinus) pain. I explained that this is by no means new - I have had sinus pain on and off since childhood, having my first operation when I was seven. Surgery would relieve the pain for a year or two, then it would just come back again. This time however there is no more surgery I can have. I managed before with a combination of paracetamol and ibuprofen, however I am not allowed to take ibuprofen post transplant (it affects kidneys) so am struggling to find something effective. The consultant did agree that this sounded very much like sinus pain (and not a facial pain syndrome which the ENT was querying). However he said that since there is not more ENT treatment to be done, then the main issue is now pain management. He is going to try me on a drug called Dosulepin which is similar to something I was on post transplant. It is traditionally an antidepressant drug but also used for chronic pain (don't worry, I am not depressed!) He did however emphasise that he is taking a rather pessimistic view of how much he can help, mainly due to the fact the pain has been going on so long. He cannot get rid of the pain (although I never expected this outcome anyway) but will try at least to find something to help a bit. Also because of the chronicity of the pain, he would not expect this to work quickly and will see me in 3 months time...and even at that point he is not sure that is a long enough trial. I am at least glad we are trying something new and keeping everything crossed that I see some improvement, no matter how small.

I am heading back to mum and dads tonight as mum is taking me down to Newcastle tomorrow for my hospital admission. The surgery is on Friday but I have to come in the day before. Please keep the prayers going that this will be done via keyhole surgery so that I am back in home in a few days. I probably won't be able to use my laptop (it's a different hospital I am going to) so may not be able to update until I am back home. I am a bit nervous to be honest. I wasn't nervous before my transplant because I had nothing to lose.....but now I am so well I don't want anything to rock the boat..

Lastly, I have heard some very bad news from my friend Shelley (who had her transplant the month before me). She has been unwell recently and has just found out she has chronic rejection. This is when the new lungs become scarred (the process is not well understood) and lung function starts to drop again - her lung function has dropped from 4L to 1L in a very short space. There is no cure but some options to try and slow the process so they are starting some treatment at the moment. Keep her in your thoughts and prayers - she is staying very positive and fighting this hard!