Cherish not perish

It feels great to be back home at last.  The journey was tiring but I was determined to get back rather than wait until the morning.  My bed caught me as I stumbled in and left poor mum and neighbor to help with the bags.  I was beyond zonked.  Real hungry I had to eat but it was difficult.  Each bite ached and so terribly painful to swallow.  This sensation is familiar back in 2009 when I had oesphagal problems where I couldn’t eat or drink at all.  I would just have an awful burning sensation, it was truly unbearable and part of symptomology when I was diagnosed with PTLD.  I like to try and understand my conditions from a simple point of view and I think basically my treatment is a compete reboot of my system. 

I am rejecting which means my body has been fighting to reject my transplant lung.  Big ‘no –no’ so the docs have basically grabbed my system and throttled the life out of it with high dose IV and oral steroids.  This means that my body is being re written with immunosuppression so harsh that it has to succumb.  Its tough going and really quite scary.  Probably very similar to when I was first transplanted nearly three years ago.

This means mouth ulcers, very infection prone time now.  For me it’s also quite serious as high immunosuppression could see the return of the pTLD which we have kept dormant so far with the low immunosuppression levels I was on.  There’s also the introduction of sirolimus to my med regime and azithromycin for long term benefits since changes in the lung were noted on the CT scans.

There’s no sweet way of saying that I feel like I am being poisoned by toxins but then that is what’s happening.  I just have to brace and ride the wave.  Anti sickness pills have become my new best friends over the past couple of weeks.  I’m noticing that I am reacting differently temperature wise and even my ice cravings have dampened down.

It was important for me today to try and gain a sense of self immediately.  Being in isolation is not new for me as I was as a little girl when I had cancer.  Little things like a manicure and foot soak.  Organizing my bathroom bits and pieces and organizing my new meds out.  I printed an amended medical sheet for my red book with the additional drugs so it’s one less thing to think about.

I have to say a huge thank you to the transplant team: Prof, Dr L, registrars and doctors and my lovely nurses and support staff on ward 30.  My life has been saved once more and words aren’t enough to express how thankful I truly am.

So, onwards and upwards right?

I need to keep occupied over the coming weeks as I continue my treatment plan and keep well.  Time in isolation gave me the opportunity to think up ideas for re doing some décor at home.  I will be spending time making stock for the inspired chic shop in my effort to keep fundraising for the Thomas Cook Children’s Charity.  A friend reminded me also of a charity called Post Pals and I found a family with a little girl just diagnosed with Wilms Tumour, the same childhood cancer that I had.  I have some craft toys and a mini book I’ve created about my experience, so with a bit of a tweak here and there I plan to get the book made and sent to her.  I really hope she likes it! ♥   I will keep you updated!

My photography portfolio will finally leave my hands next week so that will be good.  I have toyed over options for September courses but with what’s happened and the fact that I have just a few months left to enjoy being Employee of the Year, I think I will direct my energies that way instead.

What I am discovering with my transplant journey is that there are swings and roundabouts but in the end it’s all fantastic, I am blessed and my life is spent between two cities.  Could have been Paris and New York, but London and Newcastle is fab too!

In a couple of days time I will have had three years’ post transplant which is blinking brilliant.  I hope that there are many more to come.  Here’s an extract from a poem I found online: