Ill start with this article about me and the transplant games
Jersey boys was amazing, we went up by train and shopped on Oxford Street as soon as we got there. Then we headed to our hotel, which we literally booked the night before along with out train tickets. It was lovely. The off out we headed to meet Mel (love on the transplant list director) and we had the great pleasure of meeting loads of the team involved like editors ECT who you don't usually get to meet and I have to say I hope it’s not the last time we all meet. Sharing me and Stu's strange sense of humour and some extremely drunk conversation. I was an amazing night!! The next day we headed to the V&A after a huge fry up, which unfortunately I sicked up, not due to drunkenness but i think my bowl neuropathy. But the V&A was great; my favourite exhibition is the jewellery and Gems. I love it. The sparkling rings and tiaras steal me away. We then headed to Jersey boys 'Sherrie Sherrie baby, do do dooo dooo dooo doo' lol love it. It was so good. I loved every song and came out singing. We then went for a nice meal. The next day we were on the train at 12:15 after struggling all morning with my bowl neuropathy which decided to kick my ass, but eased up by the time we were heading home, i didn't fancy curling up in agony on the train. Also unfortunately my arthritis decided to creep up and remind me that it was still there and would still try and ruin my weekend. But I had none of it and continued to walk around despite my knee feeling like it was the size of a large melon.
So I got home and got propelled back into teaching tones of lessons. I decided that because i practically lost 70% of my hair i would have to get my clip in extension (which i only used for the wedding) cut so i could use them more often to thicken my hair. I love them so decided to go for something a bit more permanent. I'm going for the least damaging and easiest ones to put in when you have bold patches ECT. I'm very particular about my hair so it’s upset me a lot. But hey it a small side affect from the TAC and IV found a way around it.
I then headed up to leister on Thursday, there and back in a day but my mum came with me and did a great deal of the driving. I did a talk at a medical seminar. It was great and i think IV perfected my speaking now and feel really comfortable when I am. Mo DR at papworth said he would be getting in touch for any future talks. I was also hailed the highlight of the seminar. It was weird looking round there were lots of reps for different company's for NIV's and various different displays. There were so many there, yet they found it extremely hard to find me one i would get on with to travel with. Also the tech on the most modern ones was amazing. Skins like on a mobile phone, so you can personalise them!!
Friday we had our meeting for Kirstie's Big Breath Bike Ride, where we discussed a lot. We have a training plan now, t-shirt, giving page and many other things sorted. It’s all very exciting!!
I achieved a lot of new moves which was great, some really hard stuff and also i managed to come out black and blue and aching ridiculously!! My muscles still haven't recovered.
The leaving the pole jam i went home stuffed dinner down and drove all the way to London for clinic the next day. I met Hannah, who i had been talking to for a while. She had a heart transplant 7weeks ago and is looking great. It was great meeting her as not only do i get on with her in the on line world, but face to face she’s awesome and we seem to share the same sense of humour. Her mum Nicky was there to and she was great.
Here's a pic of us outside Harefield.
So Clinic went well lung function according to the doc's seems to have found its base line of 87% fev1 on harefields Spiro (it varies on different machines, hence me saying my lung functions 90%-100%) My fvc is 97% I’m very happy with this but i think it will increase a little once IV been infection free for a while. I'm having to nab pulmozyn, tobi and salbutamol to keep them sputum free and safe. I think I'm becoming a little obsessed about it, but i think it’s a good thing to be obsessed with.
So I'm back home, tomorrow I'm in diabetes clinic and CF clinic to see if they can come up with a plan for my bowl neuropathy as its causing me a lot of pain. I had another bad episode this morning. Then I'm off to thistle hotel to pay the booking fee for the 2nd Chance Ball I'm holding on 14th July to mark my year anniversary and raise lots of money for LLTGL.
Whilst iv been doing all of this iv been teaching roughly 12-18 lessons a week and rejuvenating my clothing line ready to sell on line on the web page being created for me. IV also just sorted out my first order for another pole company who have decided to take there clothing through me, which is fantastic and I'm very excited about it all.
There’s a lot of other things going on here and there. Along with preparations for my Brother Chris's first child, which I was allowed to name Luke Riley Mills. I'm helping to decorate the baby's room on Thursday, IV brought 3 little teddy bear pictures to hang on the wall and I'm thinking there present when the baby arrives as they have everything at the moment, a photo shoot of them as a family, geezz I'm welling up just thinking about it. I remember when they said I could name the baby I never thought I would be around to see it born and how i rushed to tell them the names as i thought i was going to dye. I can't wait. I love being an auntie to my other nieces and nephews and can't wait to see the brother first little tyke come along.
So that’s all for now. I hope you've managed to stick with this rather long blog till the end lol.
Kirstie,I hope you don't suffer any more pain,I also hope your lung function stays nice and healthy. I wish The best for your family and I hope you have a very exciting and positive time.
ReplyDeletekeep it up Kirstie
Harry W