Tuesday, 28 October 2014

Blood Tests, Flu jabs and more on Genomics

It was back from Amsterdam with a bump last week and Tuesday started with more blood tests to check whether my white cell levels where back where they should be.

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.

As I came through the door, the doctor said right lets see your arm. I thought to myself he must be helping with the flu jabs. I got my arm ready and he proceeded to say, 'Well where is it then?' Mmm,  'Where is what? Apparently I've already had my flu jab and am now having a bad reaction to it with a bad rash! I really don't know what happened there, but obviously it could only happen to me! By then I had lost my place in the queue, but they did manage to slot me in pretty quickly thankfully. Rob and I kept joking afterwards that it would be just my luck to come out in a rash and need a doctor once I'd had it done!

I feel sometimes over the last few months, that a lot of this straightforward medical stuff always seems to turn into a complicated affair, I don't know whether I've just been unlucky or if it's because I've got complex medical needs or just whether it's because hospital is an integral part of my life. I recently had to see a consultant at my local hospital and after an hour of waiting, I was informed by the nurse that I had been kept waiting because they hadn't got my paperwork - I was sitting in a hospital in Welwyn Garden City and then had to wait most of the afternoon while it was transported over from Stevenage.

I do try to be patient with all these goings on, but it does get trying. I also went for a routine test recently at one hospital, where my privacy was seriously neglected and it caused me so much distress that for the first time ever I wrote and complained and the hospital did a full investigation and this week wrote to me and admitted their negligence and apologised profusely. I complained really, so it would not happen to anyone else, but I can put that episode behind me now, knowing they have admitted their incompetence and are putting in procedures to avoid it happening again.

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.

On Friday I was back at Papworth, this time not for medical reasons, but as part of a new 'Transplant Patient's Representative Group', where we are working closely with the Transplant Team on issues such as the new hospital move. I am pleased to be part of this group and hopefully it will prove a good source of support for the Papworth transplant community. If you are a Papworth transplant patient and have sent in one of the many reply slips and letters about our new hospital, many thanks for doing so and for your support. We are still collating all your comments, so keep them coming if you haven't yet responded and don't forget there is the new transplant patient forum on the main Papworth website, accessed under transplant, where you can give your views, tell your stories etc. You will need a code to initially 'log in' and you can get that from the team or it is on a letter that came out with the last issue of 'Transplant Times'. It would be great to see more patients posting on there.

All in all, it's been yet another very positive and busy week, with a few blips or maybe I should say laughs along the way! I am so looking forward already to the saga of the blood tests again next week...!!!

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.

Wednesday, 22 October 2014

Amsterdam - Another First

I've had an exciting week. No doctors, no hospitals, but just good fun. After I had my transplant, my family kept telling me how I would be able to travel again, especially that I might be able to fly once more. Technically you are not supposed to fly abroad until a year after your transplant. Around this time post transplant your medication is usually more settled and your body more adjusted to things and able to cope with travelling by plane.

Aeroplanes can carry a high risk of infection for transplant patients, especially if you are a new one because of infection which may be recirculated in the air and obviously there are the usual risks abroad as for anyone with contaminated food and water.

I was lucky because I had a very steady and stable period around eight months post transplant and was well enough to go to go abroad to Paris by Eurostar, which felt like a massive step and a big 'first' after my illness and during my recovery. I still wasn't able to fly though and didn't have the confidence to either.

This week I managed to go on my first flight since before my illness. It was four and a half years ago the last time I travelled by aeroplane and it all felt very strange and surreal to be walking through an airport once again and getting on a plane. 

We had planned a trip to Amsterdam after my last clinic when my consultant had said, 'Yes you can fly again now!' I decided on Amsterdam for a few reasons. It is only a short flight and as it would be my first one after my transplant I wanted to build my confidence about flying and being abroad. It is always a worry about being away from home and either catching an infection or falling ill: it is hard that happening even in this country as most medics don't really understand all the transplant medication properly, so a short flight felt safer. In my mind I thought at least I could get back home more quickly. 

Amsterdam is also a place I had never been to and before I fell ill, Rob and I had been enjoying visiting various cities around the world and I just wanted to carry on where we had left off and explore another new city. I thought for years that I wouldn't ever be able to do this again. 

When I was recovering the girls kept trying to get me to agree to go somewhere abroad for the anniversary of my transplant. For many months I couldn't really imagine it as there seemed so many hurdles and stages to get through and I was also frightened of us having to cancel and unravel everything at the last minute. 

In the end I said I just wanted us to all be together and away from it all and that's why we rented a house in Norfolk. The logistics of organising us all together and aeroplane flights to suit everyone when they are all working felt too onerous in those earlier days too.

As far as I was aware, Rob and I were just going off for a quiet break in a new city and I was excited because I would be taking my first flight abroad. We flew out late afternoon on Thursday and had a lovely day exploring and enjoying the sunny and mild weather. We enjoyed a lovely dinner in our hotel. 

I  had just got into bed when Rob started fussing about people being outside our room. 'Mmmm yes we are in a hotel', I thought. He opened the door and I thought what on earth is he doing? In walked Sarah, Oli, Rose and David. I was speechless, they had been conspiring together for a few weeks and done a good job hiding it from me. So I got one big surprise and we did get the trip abroad all together after all. 

We had a bit of a turmoil at the last minute about whether we would get there or not with all the adjustments to my medication and although they still need more adjustment, my consultant told me to go and enjoy myself. I hadn't known at the time how the rest of the family had been on pins over whether everything was going to be cancelled or not! 

We enjoyed exploring and seeing new things together and we took a tour around the Ann Frank musuem and an evening canal cruise. It was a very special and memorable time and another massive 'first' in my life after transplant. As always, my donor was never far away from my thoughts and is always with me and when we visited the 'Oude Kerk', I lit a candle in her memory. 

Tuesday, 14 October 2014

More Promoting Organ Donation

Monday and it was back to transplant life once more, back to blood tests and back to the doctor's again. While we had been in Norfolk, I had had to phone the transplant team a few times about my white cell count, which has been too low. I was advised it was still too low and therefore I still need to stay off one of immunosuppressant drugs, myfenax, until they start to increase. I needed to get another blood test so they can check my full blood count and decide what to do.

Last time this happened, I developed a really sore mouth and it got so painful and sore, I ended up having to go to two emmergency doctors, back to Papworth and then needed to be referred to a maxio/facial consultant, who then needed to see me several times before it was sorted out.

By Monday this was all happening again, so trying to nip it in the bud this time, off I went for an emmergency appointment with the GP. Unfortunately my medication changes have got a bit complex, as I had been taken off valganciclovir too. I was on valganciclovir for about ten months after my transplant and it helps protect against CMV virus. They also put me back on it me when my mouth was sore last time after I had just come off it to see if it would help. It can also affect the white blood cells too, so my GP wanted to consult with the transplant team before he prescribed me anything that may interfere with all the drug changes my consultant has tried to make to increase my white cell count. 

So I in the end I needed to wait for my full blood count results, which weren't ready until Friday. My white cell count was still too low, so I still can't start back on the myfenax yet. By staying off the myfenax my white cells should increase and this will help my mouth problems hopefully. On Tuesday I had to have another blood test for CMV virus and I will get those results next week, so things will be reviewed again then. The week after that all the blood tests need repeating again, so it is an ongoing business for a while.

The GP, I saw was a new one and said I was a brave lady having a heart and lung transplant; I replied to him that it's great my heart and lungs are doing fine and it's been amazing, but it's just a shame the rest of me is falling to bits! We had a good laugh, hopefully all will be sorted soon and settle down. 

Wednesday we had a busy morning as we went into John Henry Newman School in Stevenage to talk to 200 year twelve pupils  (lower sixth form) about organ donation and pulmonary hypertension. Rob and I had put a slide show together and had got leaflets and goodies from NHSBT to give out. The talk went really well and quite a few of them signed up straight away to the organ donation register and there was lots of discussion, so we felt it had been a success.

I then did an interview with Bob FM Herts and Home Counties radio speaking about my first year post transplant, my illness and our visit to the school. Following our personal celebrations last week, we wanted to try and mark my transplant anniversary by trying to promote awareness of both pulmonary hypertension and organ donation.

After the school visit, we have had a request to go back and talk to the year thirteen pupils and have also been asked to visit another school too, so we are going to be busy I think!

The start of my second year post transplant has got off to a good one and the campaign continues on! 

Wednesday, 8 October 2014

Birthdays and Anniversaries

We got back from our holiday in Norfolk at weekend. We were so lucky as the weather forecast had been for mild and cloudy weather, but it was actually beautiful warm sunshine every single day. It felt as though the sun was shining especially for us, because as a family we had had lots to celebrate.

It was our wedding anniversary to start off the week - 24 years - and it was great to spend it with the family and visiting some lovely places. We went for a browse around the shops in Wells and then visited Holkham Hall for lunch and the rest of the day. The walled gardens there were stunning and still full of colour although it was the end of September.

Tuesday was a very special day of course being the anniversary of my transplant and we spent time in Downham Market and on the beach at Holkham. We were staying near the RSPB reserve at Titchwell Marsh and watched a beautiful sun set there and then we had a lovely surprise when we got to see a murmuration of starlings dance and sway backwards and forwards as they flew in to settle for the night in the reed beds. It all felt very fitting as though nature was paying tribute to the day and to my donor. 

Wednesday was then Rob's birthday. He has had a couple of difficult birthdays over the last two years. Two years ago he spent his birthday at the Lister hospital while we waited for news about Sarah who was having an emergency appendix operation, so that wasn't a lot of fun for him. Last year it was the day following my transplant, so his birthday was a difficult day again as I hadn't gained consciousness and had been put in an induced coma. 

This year was spectacularly much better and we went on a boat trip to see the seals off Blakeney Point. Rob had done this once before, but I'd been unable to go because I was too unwell. It felt like a special treat for both of us in the circumstances.

We enjoyed the sunshine and rest of the week relaxing and exploring and meeting up with friends. I was especially pleased to be able to visit my friend Ruth, who lives in nearby Upper Sherringham and we enjoyed coffee and cake and a good chat!