justgiving and there are a few tickets left from what I know so grab them if you can. The event is taking place in Glasgow.Transplant clinic was good-I met the lovely Kirsty who is just super and also lovely Victoria who are transplant recipients and also work for the same charity as myself : LLTGL. They have organised a lovely ball next month with another lovely friend Jac ,which I had hoped to attend but sadly for a number of reasons I simply can't. I will be supporting the cause through
After Kirsty and I drew breath from 20mins of non stop chatterings I was called in. Nick came with me and met Prof and the team. I always have a slight feeling of anxiety as I know that I am a bit of a yo-yo and never know what can creep up!?! Entering the room I know Prof already has my chest x ray and lung function results. It didn't take long for me to start nattering away and thanking Prof and the team for everything they have done for me. Two years on and I am still here and feeling positive about life and everything around me. I said about the usual ups and downs but that I am enjoying working life and I fit things around my medication and nap times. My lung function is satisfactory, it hasn't declined so that's good and my chest looked clear! It's all great news for me! The PTLD is stable and the large liver mass of lymphoma seems to be shrinking away!! I managed to negotiate and get my prednisolone (steroid drug) reduced in dosage by 0.5mg and I nearly jumped off my seat! Everyone looked puzzled, but for me it could mean a lot of changes with cushingoid appearance and generally the way I feel.
Problem is, when I cut down on my prednisolone its always a very difficult time and I think that's explaining part of my lethargy and weird detachment feeling today. I forget that any changes can hit me hard. I think sometimes if you anticipate something, then its more likely to happen. If you get on and carry on regardless, then chances are there will be no problems. I have to admit though on this occasion its very evident that all is not quite well and unless I feel much better tomorrow then I will prob give driving a miss for a few days and have some diva duvet time. Its not a big deal as I have nothing major planned and also it will stop me from shopping which is what always happens if I go out!!
Yesterday I talked about air travel with my consultant at the London Chest and she was excited about where I am off to next? We both agreed its very unlike me to have such a long delay and I should really take advantage of my lungs behaving themselves NOW! I spoke to her about losing Nana and she was very consoling and reminded me that this is a long healing process and can take many years. It made me think that a break could do me the world of good. Umm, its getting me thinking...
There was a moment this week where I felt quite chuffed with myself as I started my photography course and there was the ice breaker: who you were, why you where there and what type of photography you favour? I was going to be one of the last people to mumble and I thought, right, this is an opportunity to talk about organ donation in a very implicit yet explicit way. I stated that my passion for photography grew when I realised the power of a still image to tell a story and that when your voice is taken away, photography can really show the trajectory of the transplant journey. I said that I was a single lung transplant recipient and I would like to be involved in projects that use photography to communicate to the world about organ donation and transplantation. My friend Sarah Milne was involved in such a project where I was one of her many subjects and her work is truly amazing!! :-)
At breaktime I spoke to a lovely lady on the course who was interested and moved by my story. I felt at ease talking about it and I thought it was good for me to put myself out there and be honest. If it meant that 6 people went home that evening, even just to talk about it to family or friends then that's a step forward to helping someone else who is waiting for transplant.
As many of you can see, I have been very privileged to have had a blog makeover!!! Yippeee!! I hope you all love the new me...she's much cuter but she's just so sweet. My ability to forever blow bubbles is captured here in the graphic designed by the lovely and super talented Louise @ Adori Graphics and Olivia. Please do pop along to their sites (buttons on my sidebar) as they really are amazing folk and have made me smile so much the past few days. I also have the design on my Twitter page which is really great. As my transplant journey moves on, I think the colours and feel of the blog really reflect who I am. I was involved in the design with regards to specifications and likes and dislikes but the credit goes to Louise and Olivia!!! My blog makeover was created as part of WFTH (Write From The Heart) which are blogs related to medical experiences or similar. Thanks again Adori Graphics...I think its amazing!! :-)