Hello blog readers!

Another week has rushed past so thought it was about time for an update. Tagging on from my last post I am feeling much less tired now thank goodness. It is somewhat of a shock to feel so very tired (I'm tired enough anyway), and it scares me when it happens. Im so restricted as it is that when my stamina slips even a bit it is worrying. Even though logically I knew the exhaustion was down to overdoing it, i still had nagging doubts. So (as always when things get too muchfor me) I came up with a plan to try and help myself, I decided on rest first and foremost and also spoke to my cf team who assured me that this is how they would expect my body to react at this stage in the game.
I aslo decided to contact my lovely transplant co-ordinator at Harefield. She sat and spoke to me about all the problems I'd been having physically and the emotional side of the way I've been feeling lately. I know it sounds silly but just discussing all of it with her made me feel better as did her reassurance that I'm doing all the right things by keeping to my normal routine and resting when I need to. They really are so kind there and no problem is too small.
On Saturday it was my best friends 21st party, and the theme was children's party,(think dressing like kids, wearing bunches, lots of sweets and a bouncy castle!).
I still wasn't feeling great so I only stayed for a couple of hours but had a good time nevertheless, I'm so glad I was there to share her day.
The hot weather has been effecting me quite badly . I ALWAYS feel ill in the summer, the heat and humidity have never agreed with my lungs. As a result I've been struggling to breathe and have spent majority of time in my room, curtains drawn, with several fans pointed at me! I also get hayfever so have been working to keep that under control with meds, and various other things at my disposal.
I am feeling slightly better today as its cooled down a bit here(thank god for the rain!). I know most of you will hate me for this but bring on the winter!!! As much as I hate feeling crappy in the summer, I love the winter and autumn months with a passion. The beautiful colours the pale sun, then firework night and the nights drawing in. Being comfy in jumpers and wraping up when its cold, hot mugs of tea and snow or frost, the gorgeous smell of the world when it rains, wind in your face, and getting ready for christmas I absolutely Love it all.

Anyway now I've alienated those sun gods among you I will go!
Keep smiling and have a great week
xxx

I can't believe a week has gone by since I last updated. I've had a busy few days and am beginning to feel the strain today!

On Thursday me and a friend went to see the film Mamma Mia. We have been saying about going to the cinema for ages but havent got round to it, I can no longer manage to navigate my local cinema so my lovely friend (L) drove us out to another one.

To cut a long story short, I was'nt feeling my best before we left the house and wasn't sure whether to go or not, then i had some problems with my oxygen so had to organise extras. When we arrived the car park was closed so L had to drop me outside and then drive off to find a space! It was all a bit of a nightmare made worse by the fact that I left my wheelchair at home thinking it wouldn't be far to walk.However,when we eventually got in to see the film it was totally worth it. As most of you know I love musicals and Mamma mia was brilliant, a real feel good movie. The cast were excellent especially Meryl Streep and I would throughly recommend it to everyone. I had to buy the soundtrack the next day, and I'm guessing my mum is sick of hearing ABBA by now!



Yesterday was my nephews christening. I was thrilled to have been asked to be his godmother. I did find it a hard day if I'm honest both physically and emotionally. I had to use my wheelchair and a ramp had to be put in to accommodate me, and as their were lots of people there (we weren't the only ones being christened) I felt very self concious. It was also hard to see everyone else able to help out etc while I was the one needing the help.

The service was lovely and my nephew looked very cute. It was the first time I had been to church in ages, I don't claim to be a religious person but I love the feeling of peace in church. The whole transplant situation has made me reassess a lot of things and as a result my faith has grown. I lit a couple of candles or friends who had lost the fight, to let them know i was till thinking of them.
Here are a couple of photos of the day. I had taken my oxygen off for a few minute because there were alot of candles about and i didn't fancy being blown up!




The events of the last few days caught me up and I had to leave the christening party early. I was pretty exhausted and over tired as I've had trouble sleeping lately. I was up again last night finding it hard to achieve restful sleep and when i did, woke up with a tickly throat. As a result, i think a day in bed resting is called for, so thats the plan for today. I hate it when my body feels so tired, and its even harder to handle when in my head i feel the same as everyone else but my body lets me down.

Anyway I will be a good girl and rest up so that i feel better and hopefully sleep will come easier tonight!

xxx

Sorry for lack of posting, not a lot has been happening over the last few days, but thought I would check in and give you a quick rundown.

Wednesday marked my one year of waiting for a transplant. I don't know how I felt really, a year seems such a long time ago. I raised a glass in the evening, a toast to all those who lost the fight and to (hopefully) not having too much longer to wait now.
I hear a lot of transplant stories and never fail to be amazed and touched by each one, it truly is a miracle to see the results it can bring, and how well people can recover post surgery. I saw a programme recently which showed (rather graphically) a heart transplant, but the gore didn't bother me in the slightest. It was awe inspiring to see an old diseased heart being removed and a new healthy one put in its place. Everything from the dedication of the surgeons and staff, to the complexity of surgery, the relief and pure joy of the patients parents and loved ones, to the transformation of the recipients life, it is a complete miracle. And that is just the actual operation, without even considering the courage of the donor family which itself blows me away.

A memory came to me the other day which surprised me. I can remember as a child (probably about 7) asking my mum what a transplant was. After my mum explaining to me I remember saying that I would like to be a donor, even right back then the idea of being an organ donor made so much sense to me.

On a lighter note, I have been working on my next essay this week (yuck!), this time its about youth subcultures (punks, skinheads that sort of thing), working out the seemingly endless presents and cards I have to buy for various events and today had a rather lovely shoping trip with my rather lovely mummy! I didn't really get very much but helped her to pick out a new outfit for my nephews christening next week, a good job done.

Will probably post again soon if only to have a break from writing about the style choices of punks!
Stay happy! xxx

Hello lovely readers!

Friday was my Annual Review at the hospital which is basically a whole day of different tests, being prodded and poked to see how I am healthwise from last year. As I said on my last blog entry, I never look forward to these visits but when my health is at the stage it is now, I like it even less.

We set off at 10am Friday morning after a dilemma about what to wear! This is the first time we have driven up to the hospital, we usually struggle on public transport, but this time I really wanted to go by car as I get so exhausted otherwise. We also took my wheelchair as having tests all over the hospital I would never have managed to walk.

We arrived early and recieved all the forms for the day. A couple of tests were booked for set times but others just had to be slotted in when time permitted. I decided to go and have my ECG first before my heart rate went up with excersion and stress, then headed down to x-ray. Actually it was my mums suggestion to do this next and the reason wasn't wasted on me, the blood room is right next to the x-ray!

Again as I've said before, I am needle phobic. It is much better controlled now but I will NEVER be first in line for a blood test. Anyway I have certain favourites in the blood room who I deem "the elite blood takers", namely very good at doing them efficently and with minimum fuss. So after wheeling past the door several times to see who was in there, I established that they were not people I had met before therefore their blood taking skills were unknown! I then refused to go in until I'd had a good nose at "who I thought would be the best blood taker"!!! My nurse later asked me how I know what a good blood taker looks like, to which I could only respond "I just know!". After staking out the blood room from behind a door (I kid you not..) I picked a person and bit the bullet. My judgement was very good and he managed to get what he needed first time, without any hassle and without leaving a bruise! He is now in the blood taking elite hall of fame, and his face stored in my brain for future reference!

After that I had a bone scan, lung function, had my ear punctured for blood gases (oddly enough this doesn't bother me much), dietician, physio, and then the doctors.

First I saw my stomach Dr who is absolutely charming, such a friendly, caring man who I always look forward to seeing and I know will always try his best to help with my complex needs. He has put me on a new medication which we hope my stimulate my digestion and help me to feel less sick and horrible when I eat. I will start it this week so fingers crossed.

Then I saw a Cf doctor, who was also very nice, and took time to go through all my tests. My ECG was normal, as were my blood gases. My bones are a little thin but I am being treated for this anyway, and my lung function and x-ray were virtually the same as last year, which is brilliant news. Obviously my blood test results weren't availiable on the day but hopefully they will come back normal too.

I am so happy that things are remaning stable for the time being. THANK YOU to everyone who wished me well or said a prayer, I really do appreciate it and it really helped to know that people were sending me such positive thoughts. I send postive thoughts back to all of you!

I had a little shopping spree at the weekend to celebrate it was the perfect excuse! YAY!

Keep smiling ( I certainly am!)
xxxx