Up The Farway Tree

Tx Update - Day 10 - Sunday 7pm

Well it's been a mixed day really, with a bad start to the morning but things getting easier as the day progressed. It started last night with some chest pain, which felt different to the other 'wound' pain and was making it difficult for me to take deep breaths. I was given extra painkillers and tried to settle down to sleep but the pain just wouldn't let up. I was awake most of the night despite them giving me a sleeping tablet and I was asking for pain relief as often as I was allowed. What really scared me was the fact the pain was like the pleuritic chest pain I used to get with chest infections and of course with this in mind my wee head was racing with thoughts that I either had an infection or a collapsed lung. Bit of an overreaction really ;-) The doctor came to see me this morning as things were still not easing up and he felt it was likely to be nerve pain, which wouldn't particularly be helped by the morphine and would certainly be worse at night. In light of this I am starting a new medication tonight for nerve pain (amitriptyline for any medical folks), which has the added benefit of being slightly sedative, so may also help me get some much needed kip.

Due to the pain I had a very quiet morning and spent most of it complaining, sporting the huffiest face possible and demanding Andrew fix my pillows and reheat my heat pad at regular intervals. Thankfully as the day progressed the pain started to ease up a little and I was a bit nicer to be around and felt more positive again. I think I am just so fearful that this bubble is going to burst and something will go wrong that its leading me to misinterpret normal parts of the healing process. I think with time and I will grow more confident however, and more comfortable with my new lungs and their ability to behave themselves.


This afternoon was spent getting 'teaching' from one of the nurses about various post transplant issues, as a continuation from yesterday. I had noted lots of questions down after reading the material and she was able to answer most of these for me. We covered things like the fact I will still be very immunosuppressed for the first 12 weeks so need to avoid crowds of people, anyone with any sign of a cold or infection, shops, hair dressers, restaurants, pubs - anywhere really where I could risk picking up an infection. This is especially the case at the moment when they are still adjusting my anti rejection drugs. At least the weather will hopefully be improving over the coming weeks and I will be able to take lots of walks and spend the time building up my strength for all the new activities I will be able to enjoy in the future.

There are also lots of foods I should avoid which carry a higher risk of food poisoning, and I was most disappointed to find you are supposed to avoid BBQ'd food. On a positive note however, they were ok about me having Seb back home at any time, as long as I don't pick up dog poop (shame) and follow good hygiene (no more doggie kisses on the face then!) I wont be allowed to drive for around 12 weeks and the bone healing will continue for 4-6months, so a driving position may still cause some pain. I think I will find this hard because at a time where I want to rediscover my independence I will probably feel a little restricted. A lot of things cannot be forseen at the moment, as I will be due another bronchoscopy at 1 month, which could alter the picture significantly. Hopefully I will continue to show no rejection at this time, but I'm prepared to roll with the punches as they say and will just have to deal with one stage at a time.

The other issue at the moment is my appetite, or lack of. I was really hoping to find it had picked up by now, but its still early days. At the moment I am still using my overnight peg feeds, but most people who get a transplant find they no longer need these, as they are not burning up the extra calories fighting infection. The nurses are wondering if my feeds are suppressing my appetite and actually being more of a hindrance at the moment, so we are planning to stop them from tonight and see what happens. I have to keep a food diary for a few days and the dietician will review this to see if my intake if adequate without the feeds. I have been on and off feeds since I was about 12, and used them 7 nights a week for the past few years just to try and keep my weight stable - so the thought of going without them altogether is a strange one. It will be absolutely fantastic if i can do so though - the thought of having a good nights sleep attached to absolutely nothing is a wonderful thought. The thought of eating like a normal person is even better.

I'm going to go and do some exercises now. I managed a walk to the main door and back today, but need to complete my other homework before I get caught out for skiving...