Thursday, 24 March 2016


It's very nearly Easter and time for a restful few days I hope. Lots of things have been happening during March and since my book launch for 'Life is for the Living'.

I've had a few clinic visits for tests and monitoring this month following my episode with CMV virus at Christmas. It's taken time to get over it and I'm still having my immunosuppression increased and being closely monitored as my doctors want to keep a balance of no rejection levels and no return of the CMV. I'm also being kept on the Valganciclovir drug to stop the CMV returning. My blood pressure has been rising again too - a side effect of the immunosuppression drugs. I've had a new drug Ramipril intoduced - as well as the Amlodipine which I'm already on- to help lower it and so far it seems to be doing the trick. I'm still waiting for blood test results, but if they are ok I'm due back at clinic next month again. It feels reassuring to be checked regularly at the moment and I've just decided to let the doctors do the worrying.

I've been feeling really well despite all this, and the only symptom I'm still experiencing is tiredness. The problem is I don't know if it is a symptom or not, as since Christmas I've been really busy with editing, publishing and launching my book. Mostly though, I've been running around with Ted, our puppy. I think I'd forgotten how much hard work having a puppy is - I was only 21 when I last had a puppy so it's a very long time ago! 

I'm usually up and about with Ted just after 6 in the morning, so it's early starts to the day - sometimes we are out and about in the park very early and I try and walk him twice a day. I think it may be the early starts that make me feel extra tired by the evening, as since I fell ill and even after my transplant I hadn't been getting up much before 7.30am. I'd always seen the  extra lie in as a bonus for not working anymore. So I think the extra tiredness may have come with one very cute cocker spaniel pup. On the plus side Ted is keeping me active and has helped me build my strength back up again since Christmas.

I'm planning a quiet Easter with lots  of fresh air, walking, reading and rest. And talking of reading - fancy a good book to read this Easter? I know a good one - Life is for the Living - look it up on Amazon  - £8.99 for a paperback and £3.99 on Kindle! The link is on the side bar.

Have a very happy and peaceful Easter everyone.

Tuesday, 8 March 2016

Book Launch and Thank You...

Since I released my memoir 'Life is for the Living' in time for Valentine's Day a few weeks ago, my feet have hardly touched the ground!

It was a huge relief to press the 'publish' button at long last after months of writing and editing, but with that came the nerves and apprehension a little too. This is my very first book that I've written and self-published and the whole process is completely new to me and still a learning curve. I had said to my husband, 'Do you think anyone will really want to read this?' He'd replied, 'Well it doesn't really matter, as it's an achievement for you anyway and has been both a learning and therapeutic process for you.' I was happy with that, but thought it might be good if I could sell at least a hundred copies, as after all it is about raising awareness of causes dear to my heart and also hopefully raising money from the proceeds for charity. 

But it's been a totally overwhelming response to date, I reached my milestone of a hundred book sales surprisingly after the first week or so following it's release and then I had a 'Book Launch' celebration, again to help promote the causes of Pulmonary Hypertension and Organ Donation and I actually sold over another hundred books - in fact I ran out, which I couldn't quite believe.

We had a raffle at the book launch event to help raise funds for a transplant support group that a group of us are setting up at my hospital, Papworth. Our group was given two very generous donations at the event, so with the raffle proceeds as well, we now have enough funding for our room hire costs, equipment and enough to keep us up and running for a while. 

Besides this, the proceeds from the book sales amounted to £750 because people were so generous and many donated extra to the cost of the book and I was also given another very kind donation to add to this, so we ended up with £1000 to be shared - as explained in the book - between the PHAUK, Papworth PH Matters Support Group, Papworth Hospital Charity and Papworth Transplant Patients Representative Group. Rob and I were just truly overwhelmed at everyone's generosity, kindness and good wishes. I will be distributing the funds this week when I visit Papworth and sending a cheque to the PHAUK. I can't say thank you enough to everyone that came and supported us. 

Since then, Rob and I have also been overwhelmed with positive messages and emails about the book, again I can't thank you all enough for your encouraging words, feedback and support. It's difficult to relay all the comments on here, but here are a few just to give you a flavour, especially if you're still thinking about whether you might like to read it: 

'It is such a good and gripping read that it should benefit the PH world - but also be a great read for all different people of all walks of life.' B

'It is a thoroughly inspiring piece of literature'. S

'Oh goodness tears before I even got onto your story. It is brilliant! So well written, I'm having trouble putting it down..' K

'I can relate so much of what you wrote from your love of Earl Grey tea to the hallucinations of intensive care...' C

'It's a fantastic read and you should feel very proud of it  ... I have made a donation to Papworth in lieu of the book'. M

'What a powerful story...' M

'Thank you for putting into words EXACTLY how I felt both pre and post diagnosis of IPAH. The feelings of despair, the guilt, the unknown, everything... M

'Only half way through but going through every emotion ... a very human book that resonates on different levels... you know what I'm doing over the weekend, reading!' S

I want to thank everyone who has given me some lovely reviews on Amazon too. The reviews on Amazon can help boost sales, as if there are over twenty reviews, Amazon will start to advertise the book. This can help reach out to new audiences and raise more awareness of both Pulmonary Hypertension and Organ Donation. The more sales, the more money accumulates to donate to PHAUK and Papworth Hospital Charity and both the PH and Transplant support groups at Papworth. So it's well worth taking time to write a review if you would like to support any of these causes. 

'Life is for the Living' is available on Amazon, both in Kindle format (£3.99) and paperback (£8.99), the link is below. 
I also hadn't anticipated the need for 'signed' copies and have now set up a PayPal service should you wish to purchase a signed book, these are £10.99 inc standard post and packaging, please private message me via Facebook, Twitter or email (website) should you wish to do so. 

I just want to say another massive THANK YOU for all your donations, messages and support!