Up The Farway Tree

Big Shiny Gold Star for me!

My appointment at Newcastle went really well yesterday. We turned up at 7.15 am to find a queue of people waiting already, so I think I ended up being last to get all the tests done! But then I was one of the first to see the doctor so we actually escaped by 11am - a record so far.

I first had bloods taken - it took 3 painful attempts and me sitting with my hands in a bowl of hot water for 10minutes, but we got there in the end. My practice nurse must be really good at blood taking as she always gets it first time :-) I will get the blood results later today but I am not expecting any surprises. I then had lung function and x-ray. Now this is the good bit.....I blew 90% on my lung function!!!!!! I have never had a result like that in my entire life. I have always been described as 'moderately to severely' affected lung wise when I was growing up, so although I can't remember the numbers I know that my lungs have never functioned at 90%. As an example, I do know they were 45% when I was about 15/16 (and I went hill walking on that!) Anyway, needless to say I was rather smiley with that result.

Then we saw the doctor, who seemed to be really pleased with me. He showed me the graph of my lung function since transplant and it shows a lovely steady upward trend at each visit. Obviously it has to plateau soon but to have reached 90% by 4 months post transplant is pretty good going. He asked if I was taking lots of exercise and I said I was - to the point I fractured my foot - but he just seemed to be amused by that! Not so funny really ;-) The foot it much better but is still twinging a bit, so I am just being careful with it at the moment. All my other test results looked good -oxygen saturations 99%, blood pressure spot on, last blood tests all normal, weight steady and pulse has come down a bit. It was sitting at 12o all the time, but is now 105 which is much better. So, he basically said he couldn't ask for me to be any better at this stage!

I did mention the fact the acid reflux is still bothering me but he didn't have the results of the study yet, so we will discuss that when he has more information. I also have been getting terrible sinus pain again - its just constant and I am popping painkillers all the time, but with little effect. I used to take ibuprofen with good results but am not allowed to take that any more, so its making things difficult. I am still doing the daily sinus wash outs but they don't appear to be making much difference. Anyway, I have an appointment with ENT next week so am hoping they have some useful suggestions. I asked the doc yesterday if surgery would be feasible. He said my lungs are fine to cope with surgery but the problem lies more with the fact I am immunosuppressed and sinus surgery will release bacteria into the blood stream, which is not ideal. The ENT would need to discuss any options with newcastle and hopefully they can agree on something - I can be given prophylactic antibiotics pre surgery to help, so it has not been ruled out. I just really need to do something -its seriously dragging me down. I am wondering about looking into alternative therapies such as cranial osteopathy (to try and help sinuses drain) -if anyone has any experience of this, or any other bright ideas please let me know!

Other issue at the moment is this leaking peg tube site, which is getting worse as opposed to better. It can be fine for hours and then suddenly decide to leak badly, soaking through several dressings and creating an embarrassing situation. I asked about getting it stitched but apparently the surgeon doesn't like doing this because it rarely stops the leaking and has to be done via endoscope, so isn't entirely uninvasive. At this point I don't care if it only has a 10% chance of success - something needs to be done! I can't just have this leaking hole forever. I have been investigating it myself and I understand there are other surgical options, so I think my best bet is to ask to speak to the surgeon himself. The nurse is on holiday just now but I will phone next week and take it from there. I am not willing just to let this go on.

Although these other things are annoying, hopefully they can be sorted out soon enough. As far as the transplant team are concerned I am doing great.....so we will just go with that assessment for now :-) I also don't need to go back for another 7 weeks now - record gap! - and at that point they will do my 6 month bronchoscopy, which is another huge mile stone.

I did enquire about Louise when I was down at newcastle, but obviously they can't really tell me anything as its all confidential. I asked if it would be appropriate to hand in a card to ITU and they said that was fine, so all I can assume is that she is doing ok at this point in time. ITU said they would give her the card right away so I can also assume she is actually awake now. All sounds promising! Keep up the good thoughts :-)