I've started getting my blood tests done at the local doctor's surgery to save me a two hour round trip to Papworth. It just involves me booking the blood test with the receptionist, which has so far all been dealt with very efficiently, and then I receive paperwork from Papworth to take with me when I see the phlebotomist, again all very efficiently dealt with.
The big problem comes when I go in to the phlebotomist and the reaction I get when they receive the paperwork. On my very first visit I gave my paperwork in and was told, 'This isn't the normal way - you should have it written down on paperwork format that looks like this!' A waft of papers that had been generated from a computer was then waved in my face. With that attitude being taken with me I could see these tests were not going to happen if I wasn't careful, so I very firmly replied that this is the paperwork I had been sent and I needed the blood tests undertaking and wouldn't be leaving the room until they had been done, as it would be a danger to my health not to be checked. The person then agreed to proceed and sort the paperwork afterwards.
The next visit didn't go very well either, a different person was taking the blood samples and I handed in my paperwork. After a lot of huffing and puffing, the person went off to ring her supervisor at the hospital and then came back and agreed to do the tests after I had been given one very stern telling off for not following correct procedures and telling the doctor's receptionist about my paperwork first!
On my next and latest visit this last week, I then went to the receptionist first, showed my paperwork as I'd been ordered and was looked at like I was bit strange. The receptionist was really helpful and I explained I had been told off for not doing this last time, she checked the computer and said all was in order and it was all booked as normal and just to take the paperwork in with me. So off I went in again and was greeted with the same confusion as before - a long, disdainful look over the paperwork; a, 'Have you told the receptionist about this?' And so on... again, eventually I managed to get the bloods taken and was ordered once more to make sure I tell the receptionist when I come next time ??? !!!
I cannot really understand why all this has to be such a difficult procedure, but as I am having to have so many blood tests at the moment, I really feel I should try and build up the support I require locally, rather than running off to Papworth every five minutes, so I am determined to persevere and keep that smile on my face until they get used to me and my hospital's paperwork!
Next up later in the week was my flu jab, needed because I am classed as vulnerable having had a transplant. I booked in along with many other patients coming and going that day, we were ushered into a corridor where several nurses were just calling out our names in turn. I'd been advised there were four more patients in front of me. People kept on going in and I began to feel I'd been waiting a little too long by now. Rob was sat in the main reception and suddenly came through to tell me that my name was flashing up on the screen to see the doctor and not one of the nurses, so good job he was sitting there and off I went to find the doctor.
I am having some physio at my local hospital at the moment and had a session this week too and that is going really well and the lady who is helping me is great and really understanding. It is not, thankfully, always such an effort and I do try and laugh things off and friends are telling me to maybe write a book about all my 'funny' hospital trips! Maybe I will one day and that will be my next book and we can all have a good laugh!
Fortunately, there have been more positive things happening than negative this last week. I got my own article about Cumbria and my recovery from my transplant published in 'Cumbria' magazine. It felt good to see something I had written published in a magazine and also raising awareness of Pulmonary hypertension and organ donation at the same time.
I was also asked by Genomics England if I would help with a media interview with a Japenese news agency, Kyodo news, which is a leading news agency in Japan. Representatives from both came to our home and I did the interview and had photographs taken. Genomics England is a company wholly owned by the NHS and are responsible for the government's '100, 000 Genomes Project', where genetic sequencing is planned to help and treat patients who have rare diseases and cancer. The article is planned for publication on New Year's day and should reach a large audience in Japan. I was interviewed about my pulmonary hypertension and transplant and about how I had had genetic testing to see whether my daughters may be affected with the disease and how I had given DNA for the genetic research that is being undertaken on PAH and the importance of that.
Lastly, take a look at my gardening blog, my michaelmas daisies are out and in full bloom. It was exactly a year ago last week that I came home from hospital. One of the very first things I did was to walk down the garden - walking was a struggle at that point - and look at my michaelmas daisies, which I knew had come out while I'd been in hospital and at times I thought I may never see them ever again. When I see these flowers now they are a timely reminder of my transplant and the very special lady who gave me the gift of my new life, who allowed me to have this last amazing year and who helps me every day to know that life is very precious.