Archive | September, 2012

Thank you :-)

20 Sep

Hi everyone, just wanted to say thank you so much for all your lovely comments since my last blog post- your support as always, has meant so much 🙂

I’m starting to feel human again as the cold begins to improve, hopefully il be fully back to normal in a day or two.

Lots of love xxx

A little moan…

17 Sep

Hi everyone,

I do apologise but this is going to be a slightly moany blog, I guess life cant be wonderful all the time! I want to make it clear though before I start that I know how lucky I am and as much as I might complain about a few things now- it is absolutely nothing in comparison to what I used to live with and what other people are still coping with… I really have very little to moan about.

That being said, I have had a couple of tough weeks. At my last clinic I mentioned that the Dr had stopped my ‘happy pills’- the citalopram and amiltriptiline- both of which I have taken for probably about 2 years now. I honestly hadn’t thought that they were doing very much but maybe I was wrong! Coming off them (especially together) I have had horrid side effects of headaches, nausea, sickness at times, dizziness, confusion, feeling boiling hot, weird dreams and just generally feeling really quite odd. Then on Friday I felt absolutely terrible- everything was way worse but specifically the headaches and nausea became unbearable. I have spent the best part of the weekend in bed which didn’t help- the only thing that happened was last night I started a stinking cold! I am now feeling thoroughly miserable and sorry for myself- I think it might be man flu lol. On top of all this of course I have felt what can only be described as fragile! Phil would probably call it grumpy and yes I have been in a really bad mood. Plus I keep crying at stupid things…. like Chris Moyles leaving for examply (although that is actually really sad) but maybe I do need those pills!

I have also been having bad aches and pains in my neck and shoulders which I put down to starting the gym classes and pilates last week. I asked my lovely brother to give me a proper massage which highlighted the fact that I have a big lump at the base of my neck which is what is sore. It turns out I have a “Buffalo Hump” from the high dose steroids. Just brilliant…. no one else has even heard of this but typically I manage to get it. I look like the hunchback of notre dame and Im not happy about it! Hopefully it will go down with time but fingers crossed I wont need to increase the steroids any time soon as I’m not sure my body will cope too well with any more medication.

I am completely puffed up, swollen face, hands, massive tummy which does not go down. I’ve put on so much weight (some fluid but yes some of it is just food) and I don’t sleep much. I hate the way I look and feel really uncomfortable in my body at the moment. I know though- it really is a small price to pay- a year ago I would have been disgusted at the thought of me moaning about tiny inconveniences like this- and would have given my right arm to be walking about and living a normal life- believe me I will never take it for granted ever again so sorry for being so silly now.

The thing is transplant is not a cure. We were always made fully aware of this before going on the list and now I understand why. The whole time we are trying to keep things at appropriate levels and it is a constant battle. I am pumping my body full of strong drugs everyday to fool it into carrying on and thinking it’s healthy- it’s no wonder every now and then it gets confused and rebels! It’s hard work this transplant lark and it’s hard not to always understand everything. It’s a rollercoaster ride- but one I would get back on everytime! I find it hard knowing which doctors to contact and when- you cant go running to Harefield for every tiny thing but on the other hand no one else wants to take responsibility for deciding what is a tiny and what is a significant problem. I also find as amazing as Harefield are, that they do not pay much attention or give enough acknowledgement to side effects, I agree that they are not the main focus but they do make a huge difference to everyday life. Thankfully I get a lot of support from other transplantees online and find their support and advice invaluable on a daily basis.

I’m hoping I am now over the worst of the withdrawal and within a few days my cold will have passed and things can get back to normal. My pet hate at the moment is cancelling arrangements- I have had to do that far too much over the years and it’s not something I like doing now. Apologies to those of you who have been inconvenienced by me this week.

I’ll end on a nice note- the few things I have managed to do this week have been really nice and I did enjoy my first pilates class although not sure if that added to the neck problems. It was also my Mum’s birthday and I enjoyed being able to make her a birthday cake this year and I tried out some of my new cake tools which was fun 🙂

Happy Birthday Mum!

Inside the masterpiece 🙂

I also forgot to mention before I went to the UK last time I met up with Rachael and Tom for a coffee. They have been travelling in Australia for a year and did a sponsored cycle for the British Lung Foundation while they were there. Rachael for those of you who won’t know / may not remember looked after me 3 days a week when I was ill. She was so kind and was such a help and she really understood what life was like for me on a day to day basis when I was poorly. So to meet her for a drink and show her my amazing new lungs was just wonderful 🙂 Big congratulations to them on their recent engagement too- lovely news xx

So, will shut up now as I expect no-one is reading to the end- you will have got fed up of my pathetic whining! Hopefully I will have sorted myself out before my next post.

Love Kerry xxx

Disney

Clinic Update- 41 weeks!

8 Sep

I had a lovely few days back in the UK staying with Jane and Jim again, I flew over by myself which was all very easy and Uncle Jim kindly picked me up which makes a huge difference ☺ My cousin James, Clare and Sean came and stayed for the night and we had a lovely evening playing games etc.

Clinic went really well on Monday 3rd September. It started very early- I had a very keen driver pick me up at 7.15 am (I have to be at clinic for 10am!) we arrived by 8.30am, I had all my tests super quick and I was finished by 9.30am with a very long day to wait to see the doctor!

I had my ipad and kindle so had enough to occupy myself and it was lovely weather so I sat outside for a bit. I also discovered that the canteen (The ‘Hungry Hare’) sell amazing croissants- I cant believe I haven’t discovered that before lol.

I also was very pleased to meet lovely Kimberley Kneil, she had her transplant only 6 weeks ago and is looking absolutely amazing… I certainly didn’t look anything like as well as she did after that short time. I also had nice chats with some other patients there. I love being able to meet people in clinic who I have been following or chatting to on the internet, or even just new faces, we all have so much in common that most people can never quite understand the extent of and I feel these friendships are really important to me.

I was just sitting in the outpatients part about 11.30 when one of the nurses came out and started to round up patients to see the doctor early (usually they start at 2pm) but they were a few doctors short that day so decided to get on with it!

Surprise I was FIRST! And I got to see the main man Dr Carby which I was really pleased about. Obviously he would always be your first choice of Dr to see but I’ve only managed to get him twice since transplant!

He was really pleased with me, all my bloods are back to normal and all major organs functioning fine. No infection markers raised or anything and x ray all clear. My lung function tests were slightly down but he wasn’t too concerned especially given the shoulder pain I have been having which affects my ability to blow hard enough for the spirometry sometimes. We discussed memory foam pillows to help this- not a particularly medical solution!

Dr Carby stopped some more medications- my ‘happy pills’ which I was taking for anxiety issues pre transplant (watch out Phil this week lol) and the best news of all- he stopped my last nebulizer ☺ so happy with that- I had been told I would probably stay on that, which only takes a short amount of time each day but it feels a real chore, especially when you feel you don’t need it and should be free of lung things like that now! I have very happily just packed away my nebulizer and setriliser equipment etc. Im sure there will be times when I need to go back on it- but not every day at least.

We discussed my last hospital admission and he was furious that the doctors at Harefield hadn’t admitted me, despite me calling 3 times for help. He said he wants me in Harefield rather than a local hospital every time I am even slightly concerned- especially important for me, given my distance from the hospital and flight timetables etc. Thankfully no harm was done this time but he stressed the importance of the experts treating us transplant patients- even for simple ailments as you never quite know what else may be going on. He says that their pro-active approach is what gives them the best survival rates- this is definitely something I want to be making the most of- so important lesson learnt for the future!

So all in all a great little trip, I’m back in the first week of October for my first annual review (a month early). I will have a CT scan to check rejection status and I also need to have an impedence test. (24 hour tube down my nose to check for acid reflux in the lungs- this is hideous but really important to keep lungs healthy and bacteria free). I will then come back the next day for normal clinic. Dr Carby then said all being well- he wont see me again until the new year and will move my appointments to 3 monthly ☺

So now I’m back at home, had a mixed week of being busy getting jobs done and also resting as was tired when I arrived home. I had Tom, James and Mum round for dinner and put my new found culinary ‘skills’ to the test. It wasn’t too bad actually (apart from the peppercorn pot lid coming off into my stroganoff so we had to eat round the peppercorns lol). My treacle tart, inspired by my new favourite tv program The Great British Bake Off, tasted nice ☺

September was always going to be when ‘normal life’ resumed. Phil is back to work and I’m getting into my own routine, 3 gym sessions are booked for next week- 2 cardio and 1 pilates class which I’m dreading but keen to get on with. I really want to start shifting some of this excess weight from the steroids and hopefully improve my lung function a bit further- I have been a bit lazy the last month or so as life has been so hectic.

Both my lovely god- children, Liam and Raffi are starting nursery this / next week so fingers crossed they enjoy it…. I will be thinking of them (and their mummies!)

Think that’s all for now…. Love Kerry xx