Archive | February, 2012

13 Weeks

21 Feb

Hi everyone, hope you are all well!

Tomorrow I am 13 weeks post transplant and on Thursday it is 3 months exactly since transplant- another really good milestone. It means I am free to get out and about a bit more and meet people, although still need to be super careful not to pick up any germs. This is something that will continue forever so its learning to get a balance between living my new life and making the most of it but also not taking any unnecessary risks which will end in a hospital stay!

Last week’s clinic was fairly uneventful to be honest, I was really pleased with my lung function as it was up to 69%. Everything else looked good and nothing to report. It was an extremely long day, it was half term so the traffic was brilliant, clinic was pretty empty so thought it would be nice and short however it turned out there was only 1 doctor seeing patients (instead of the usual 3 or 4) so it took forever and of course I was one of the last… luckily because I was finished tests so early, Mum and I had decided to go shopping in Uxbridge for a few hours over lunchtime, otherwise it would have been an extremely long wait to see the doctor. I was exhausted by the end of the day!

On Tuesday I saw Aunty Alison (my Dad’s sister) which was lovely, I am looking forward to seeing some of my cousins next time too hopefully.

On wednesday I went back to St Peter’s the local hospital and met everyone at the respiratory care team who had helped me so much before transplant. They were all so lovely and happy to see me- it was so nice to walk into their office and show them how well I am. I also left Mabel (my extremely attractive walking aid) with them and donated my old nebulisers to them as I am not allowed to use the same ones post transplant but they were both only a few months old so didn’t want them just to be binned!

This week it was Uncle Jim’s turn to be away and I had a lovely weekend with Aunty Jane. My good friend Jo came round for a thai takeaway and a girly sleepover on friday night which was great. Jane and I had quite a few nice outings and little walks over the weekend and lots of nice meals πŸ™‚

I have now put on a stone in weight since leaving hospital and while this is excellent, its not really going where I want it to! I have a big tummy and a fat face with no cheekbones and then have stayed stupidly thin everywhere else! I am also being warned by lots of people to cut down on the food as I will very quickly get too fat… at the moment this seems like an impossible outcome but it is something I need to be careful of, as I am eating a ridiculous amount… (I call it eating for healing!).

Clinic this week was fine but not the best. Everything looked good apart from my lung function was down slightly by 2%. Not a big deal but its the first time it hasn’t gone up so that was a bit disappointing. It also means that I have to go back to clinic next week which I was hoping not to. It was another fairly long wait to be seen by the doctor, both Mum and I fell fast asleep in the waiting room which was a bit embarrassing- the lady sitting opposite us was laughing at us! We are doing quite well at investigating the local pubs in Harefield for lunch- I am comparing steak sandwiches in all of them!

The hospital still don’t have a home spirometry kit to give me which is very annoying, as it means they wont let me go longer without seeing them at Harefield until I can monitor my own lung function daily. They are having issues with their supplier and cant do much about it but it is getting a bit of a pain travelling to the hospital every week and it means I start every week getting really tired. Anyway cant be helped and at least I am in a much healthier state now to do the journey!

I have a quiet week this week, mainly on my own at home. I am thinking about making a cake today and I am also waiting for the oxygen people to come and pick up my old concentrator and equipment today as I no longer need any of it! Its lovely to be waving goodbye to all of that πŸ™‚

This weekend Phil is coming over with his Dad and they are going to watch rugby at Twickenham. Then I am so excited as I am going back to Jersey with Phil next tuesday for a few days. It has been 8 months since I have been in Jersey and my house and I am really looking forward to it and also seeing my little Disney πŸ™‚ I wont be back for long so unfortunately I wont be able to see many people but hopefully it wont be too long before I am back for a bit longer. Although the boat is so expensive- it has cost us almost Β£600 just to get me back for a few days… ridiculous! I cant wait until I can fly again. I have a bit of a cold this week which is annoying as I need it go before next week so lots of rest and fingers crossed!.

Finally, some really exciting news- Phil and I have another little nephew this week- Oliver Barry Clarke. We cant wait to meet him and see Becky and Chris and big brothers Owen and Liam. Big congratulations to them πŸ™‚

Think that’s about all for now, I will post again after my trip to Jersey!

Love Kerry xxx


11 Weeks

7 Feb

Hi all, hope everyone is well!

Tomorrow I am 11 weeks post transplant and still doing well πŸ™‚

Clinic last week was good, saw the head consultant Dr Carby and he was really pleased with my progress… his comment to me was “wow you look great…. don’t think I’ve ever seen you vertical before!”. Although tiredness at this stage is very normal, he thought some of my pills might not be helping this so he took away my beta blockers as my heart rate and blood pressure are now nice and normal and he also took away my amiltriptiline pills which I was on pre-transplant to help me sleep. I had been under the impression that they didn’t work but I was wrong as I then didn’t sleep much all week! I took the pill again starting on sunday night and have been sleeping again. The doctor advised this monday to do a week of 10mg and then a week of 5 mg and wean it down. Although it is only a small dose, it will have quite an effect on a body of my size. My anti- rejection levels were slightly high which can damage the kidneys so they reduced my evening dose (although rather annoying because it becomes 4x 1mg tablets instead of 1x 5mg!) Another problem I am having is itchy skin- my feet and back drive me mad at night- no amount of scratching relieves it… this is likely down to the medication and should hopefully settle in time. There are so many side effects to these medicines that are simple little problems (especially compared to what I lived with before tx) but they add up to be really annoying together! I can’t complain though whilst these lungs are behaving so nicely πŸ™‚

Sorry I didn’t blog last week, with not sleeping I really wasn’t feeling too great all week and I also had a bit of a cold. Nothing to worry about as didn’t affect my chest thankfully but I was having horrid headaches, eye pain and sickness and the computer really didn’t help any of those things. I’ve noticed that when I am tired my chest becomes really heavy and uncomfortable, especially in the evenings, this is just my chest muscles getting tired- they are still getting used to being used!

My sister Kim was over at the weekend which was so lovely. We chatted away well into the night and then slept all morning (I briefly woke up to take pills obviously!) We also went for my first proper shopping trip (clothes and shoes) although I didn’t buy anything so Phil couldn’t get cross! We discussed all things girly and wedding related and had a really great weekend, with some lovely meals cooked by Uncle Jim πŸ™‚

Yesterdays clinic went really well again, everything is looking good and all tests are good. Bloods all normal, weight up, lung function still increasing and x ray looks lovely and clear. Doctors still very pleased. I no longer have any dressings as my trachy wound has finally closed. It’s looking really good actually- you can hardly see it. I also saw my wonderful surgeon who was happy to see me looking well and we finally learnt how he got these lungs in!! I also saw Ann, one of the transplant co-ordinators who I’ve seen since my first visit to Harefield and again she couldn’t believe the difference in me. I got to meet some transplant friends as well- Mark W who has been really supportive online throughout my journey and also Graham from Jersey who had some good advice for when I’m back on the rock! It’s really nice to make new friends at clinic although I am quite shy to start the conversations!

I am feeling much better this week and have been shopping again today, a big Sainsburys trip and also bought a handbag with some vouchers I had…. its been ages since I had a new bag. It took a long time though as I couldn’t decide which colour to get- Im out of practice at shopping!!

Got quite a lot of time on my own this week so will be doing lots more jobs for myself so will also be balancing that with lots of rest and obviously some walking. I am going out for dinner, just round the corner, with my lovely friend Leanne on thursday. (For those of you who don’t know, we used to share a flat in Jersey a few years ago and I miss her lots since she moved to the UK but luckily lives quite close to my Aunt’s house.) Im a bit nervous about going out in the evening as I get so tired but its so close to home and it will be another milestone.

I feel ready to try driving now but I need to sort out with the insurance and DVS what I need to do to be legal! I was hoping to try mums car this week but need to get the paperwork sorted first. I just really want to be driving when I’m back in Jersey and not stuck at home. Im finally starting to walk a bit more normally, it’s less of a waddle now and can go a bit faster, although I get more wobbly as I get tired.

Phil is coming over this weekend and I hope the weather doesn’t get in the way… will be gutted if he can’t get here so fingers crossed.

I think that’s about all my news for now.
Love Kerry xx