Saturday 26 November 2016

There's no place like home

As I'm being wheeled out of the hospital doors, I know that whilst it's not the last time I will be here (I'll still be coming back for clinics) I will not see a lot of the staff here again. They have been coming in and saying their goodbyes for several days. These people who everyday fight to save your life and then, when there is no more they can do, help you to plan your final months with the upmost care.

To every last member of the team who has helped me this admission – the Doctors, Nurses, Psychologists, Physiotherapists and Porters, I do not think I can ever thank you enough. Helping someone to plan their last months must be the most difficult job for any health professional. They are there, firstly to save lives and when this changes to end of life care I understand it must go against every natural instinct. But helping someone die with grace, dignity, comfort and without suffering is a very important flip side of the coin.

Arriving home was actually a lot more relaxed then I thought it would be, usually I struggle with the stresses of coming home from hospital with all the re-arrangements that are needed, especially when all I could really do was sit there and boss people around! But as I was saying, this time around, I actually just felt really happy and relaxed.

Since being home I have had my home carers come in and surprisingly I have slipped back into this old familiarity with ease. This has been made easier with it being the same company I had before my first transplant. The carers are people who really do care. I have to say that caring for people is a hard job and one that has to be within you as a person. What I mean is that it takes something special to help people and enable them to carry on living their lives, or in my case help them to live their lives whilst they die.

I’ve been making sure that I’m not just watching the world go by though and have ben arranging lots of special things to do;

-        A lodge break with my family for Christmas, there's a spa pool which I just want to float in while my oxygen tank sits in a rubber floating device.
-        A night in a treetop hotel which is on Port Lympne Reserve.
-        A trip to Glasgow with my sister to see my friend, Victoria, and our friend, Charlotte, is coming too. We have lots of fun things organised whilst we’re there.
-        Anthony Joshua fight which is something I wanted to do for my husband… I'm also super excited about as I’ve never been to a boxing fight.

These things run from now until January. In between all this I'm resting and spending time with friends and family whilst being snuggled up on the sofa or camped out up on my bed with my loyal companion, Kia. I feel reluctant to organise anything else past then at the moment as I don't know how long I’ve got, so I'm trying to just take one thing at a time and live every minute – creating memories that will last forever.

Monday 7 November 2016

Final chapter

Every song has a ending, every book has to close, my story is coming to its finale and I'm here to tell you all just how beautiful it all was.

I'm 27 a age I never thought I would get to see but due to miracles from medical practitioners and my donors I have been kept here to enjoy what have been the best years of my life, experiencing things I could barely of dreamt of. I'm so grateful for every extra second Iv had with my family, friends and all the amazing people I met and those I got to teach and lives I got to influence, mostly I hope for the better.

I always wanted to make a difference with my life, leave a positive impact on the earth. I like to think Iv done that, whether with my Cystic fibrosis awareness, organ donation campaigning or the more simple ways of teaching my students love and self worth. This in the last year has been one of the most rewarding things to see my students grow as individuals and give them a space to be free from all the problems we each carry with us day to day. A small thing but I hope it left my mark.

I decided it was time to tell everyone my prognosis as it were because it has become a burden to hear, so your better then? And I hope your back on your feet soon? All ment with love and hope but I then feel I'm being false in my replies. The truth is my lungs are severely damaged, I do have BOS a type of chronic rejection but I do also have this RAS which I have spoken of. My lungs are shrinking upwards and squashing the upper lobes of my lungs. I have recovered from the pneumonia as best I can although the infection still lingers and this will be likely to linger due to patterns of rejection and infection being closely linked. All the other problems over the last few months, acute rejection and organised pneumonia can become part and parcel when you have a diagnosis of chronic rejection. Although to clarify if you have infection, acute rejection or organised pneumonia it does not in anyway mean you have or will get chronic rejection! I must emphasis this!

Why have I had this fast acting type of chronic rejection twice? I don't know. Statistically I just fit in  with all the other statistics. 50% of people make it to 5 years, I am of the percentage that didn't or if you add them together I did. Either way I'm just incredibly grateful for what I have had and I want everyone to remember that going into transplant. It's no garuntee but whatever you get from it is so much better then before if you throw everything you can and enjoy every second. 

I feel everyone is going to ask the question about 3rd transplant as they have and in part I have ignored it but I will answer this's I am not well enough to be considered for a 3rd transplant. It's as simple as that and do you know what I'm ok with that, of course I would always want more time but I have discussed this with the professionals and there has to be a point when you trust them to make the best decision for you and I whole heartedly do.

So I am hoping to go home at the end of this week. I will have home health care, mainly because I want my family to be allowed freedom to still live there lives and be there as my family and friends not constant care although they will obviously be involved. I will also be connected with the hospice. Time wise I have 'months' this could be 10 this could be 2 but I want to remain as strong as possible so in the long run the time I do have is better quality. I will be enjoying time with my family and friends making memory's. 

For all those who know me the way I have been dealing with this in private is how I would like to carry on dealing with it openly. It can be uncomfortable for some but it is the 'real' me as much as you will ever see. That is black humour, joking inappropriately, talking openly, my Funeral is Almost planned to a T and I will carry on doing This. In all honesty it's going to be such a event I'm a little sad I can't watch (see this is me slipping a little of that humour in, getting you all prepared) 

Lastly, my aim was to raise £10k in the next year for Harefield hospital. The very place that have done so much to keep me alive, give me a amazing quality of life and in the last few weeks shown me more then ever why they are the lead cardio thoracic transplant centre in the country. They have supported me through every part of this journey and I hope I can reach my target to help them do this work for others.

I am bringing out a t-shirt/vest/top to help raise funds but in the mean time if you would like to donate here's the link once again the total from various people raising money is 


Thank you to everyone for your on going support, I will update as and when but ask that you also respect my families privacy and my own if we do not. As we have always known this day would come this doesn't always make things easier.