Sunday, 29 June 2014

Nine Months On ...

It's July now and nine months on - I cannot believe how quickly the time has flown. I've been really lucky and made lots of excellent progress with my health over this last few months and I've managed to achieve so many things I had wanted to do much earlier than I ever dreamed. As a family we have really tried to enjoy ourselves and make the most of things while the going has been good. 

During this last week or two I seem to have hit some difficulties, but I've been ready for this to happen at some point, as the effects of being highly immunsuppressed have begun to take their toll. With one problem or infection or another I've have been to and from the pharmacists, the GP, phoning the transplant team, to the 'out of hours' doctors at the local hospital and back round the houses again. 

It happens  - having to go to emergency doctors and A&E sometimes and is part and parcel of being terminally ill or transplanted. I've been here before several times and it is quite a stressful situation to be in. You have a major medical background that is only properly understood by the experts in that field, none of the usual services are available for at least 48 hours and as soon as you mention your condition, the poor person who has to deal with you is frightened to death! 

Somehow you have to play 'doctor' yourself and try and guide them on the dos and don'ts, but you aren't a qualified doctor and you could really do with someone who knows what to do. I know many of us who have been in these situations and we keep ending up in them time and time again. I really don't know what the answer is other than to get what help you can and hope it works at least until you can get the proper help. I think we all dread it happening, I know I do. 

I ended up having to go back to Papworth on Monday and my medication has now been altered temporarily to see if that will help. My white blood cell count is low and one of my immunsuppressants has been stopped just for a week so that my levels may increase again and I can fight off the problems. I've also been put back on some medication that has recently been stopped in case it is CMV virus and I'm waiting to see a specialist at the Lister Hospital too as a precaution if all this doesn't work or suddenly worsens. 

So after a frought week and weekend we now have a Plan A and a Plan B and I'm hoping all this will do the trick and get me back in tip top condition. I have been warned it may take time and I'm having lots of regular blood tests to make sure everything is on track. Today has felt easier just knowing that everything is being monitored closely. I have just been resting, reading and enjoying the lovely weather in the garden after all that. 

Some really positive things have also been happening too. I had a phone call from Woman and Home Magazine following winning the 'Seize the Day' competition and they have asked me to be on their panel at one of their reader open evenings in October, so I can speak about my PH, transplant and trying to make the most of life. It will be a fabulous opportunity to promote awareness. 

We are also building up to National Transplant Week, which starts on Saturday. I've been working with NHSBT on some things for this. Last week I did an interview for the Weekly News magazine and this will be published this Saturday in their health section, so look out for this. On Friday I've been invited to BBC 3 Counties Radio studio to do an interview for their Sunday show 'Shrink Wrap'. I'm hoping National Transplant Week will really help to get more people to think of being organ donors and have the discussion with their families. 

A real highlight earlier last week was going with Sarah to order her wedding dress, she finally decided on 'the one' and for me it was another of those milestone moments and all thanks to one very special person, my donor. These moments are so precious. 

Sunday, 22 June 2014

Seize the Day

I was browsing on facebook the other week and Woman and Home were advertising a competition called 'Seize the Day'. The flyer was asking what your 'Carpe diem' moment was and had your life changed recently? It just caught my eye and I stopped and read it, purely because I think I've had a few 'carpe diem' moments and wake up calls in this last few years. It is always profoundly in my mind how different my life is now compared to just over four years ago. 

I am always looking for opportunities to raise awareness about Pulmonary Hypertension and Organ Donation so I decided to enter the competition and send in my story. The competition was run by Womand and Home and Tena Lady and the prize was £1000, a hair, style and makeover and photoshoot, plus an interview to be published in the September issue of the magazine. I just thought to get an interview about my story published in the magazine would just be wonderful, as it would reach so many readers and hopefully get them thinking of the importance of organ donation and raise some awareness about Pulmonary Hypertension. The prizes would be an added bonus into the bargain! 

I can't remember having ever entered a competition before, except for an odd lottery ticket or raffle, so I didn't really expect anything to come of it, but I'd already decided it was well worth a try. I do know I've had all the luck in the world already and have won the lottery more than a million times over in getting my new heart and lungs. I'd also thought that there was nothing to lose though and at the end of the day, it would be good practise for my writing course, where some of my assignments are on magazine articles and letters. 

I only came across the competition the day before it closed, so speedily sent off my entry so it got there in time and I didn't even mention it to Rob or the girls. On Friday we were busy out and about and in the evening Rob was out, as his new play was opening and both the girls had gone to see him. I just happened to check my emails and I was absolutely shocked to see an email from Woman and Home magazine saying I'd won the competition. There I was in on my own and absolutely bursting to tell someone! I wanted to tell Rob and the girls first though, so I carried on bursting at the seams for a few hours until they got in. 

I did my interview for the magazine on Thursday and we went for the photoshoot on Friday. I had the time of my life - makeup, clothes, jewellery, shoes - what more could a girl want. I thought I was in heaven! Such a huge contrast from earlier in the week with hospital, poking and prodding and tubes. I was thoroughly spoiled for the day and had such a fabulous time. It just goes to show: if you don't give it a go, you don't get and if you give things a try, then who knows... 

What can I say? Seize the day! 

There were lots of beautiful clothes to choose from. The theme was blue and white and I had to have one look that was casual and one that was more formal.

Ready to go - hair, makeup, nails.

Some of the shoes.

Finishing touches - the clothes had to be pressed first and then once dressed I couldn't sit down or crease them. Everything had to be perfect for the pictures.

Lights, camera...

Lots of adjusting and readjusting between shoots! 

Learning the ropes! 

The team - they were fantastic, so relaxed and friendly.

Makeup time - feeling a bit nervous

The studio was in a converted warehouse.

I'm not so good in high heels with my post transplant shakes, so I did the close up shots in bare feet! 

Posing for my 'casual' look! 

Getting some 'posing' tips.

More adjustments! 

The 'formal' look! 

 View to the city of London from the studio. 

I just want to thank the team, Woman and Home and Tena Lady for such a wonderful day and for making me feel so at home, relaxed and giving me this opportunity for such a fantastic time and to promote awareness of Organ Donation and Pulmonary Hypertension. 

Wednesday, 18 June 2014

Time for the Manometry and PH Testing

It had been looming there in the background now for months and having just come back from holiday it was time to get back to reality and start preparing for the following week's manometry and PH tests. This is often routine testing for patients who have had a lung transplant. It is to ensure that there is no stomach acid getting down into and damaging the new lungs. In my case, there is some concern as I have had a bad cough since having my transplant, but on the other hand it may still just be healing from the transplant operation. I am keeping my fingers crossed, because if it is stomach problems, then I will probably have to have a stomach fundoplication operation and just like anyone else I'm not very keen on that idea!

To get ready for this, a week before the test I had to come off some stomach medication that I was put on straight after my transplant, Omeprazole. When I made my appointment for the test, the nurse had said to me, we will make it at least a week after your holiday, as we don't want you feeling ill on holiday when you come off your medication. I didn't really attach much importance to this, well how can one little tablet, probably one of the least potent ones I'm on cause trouble? Well enough said, within less than 24 hours of coming off it, I had developed a severe headache and was sick. The headache continued all week getting marginally better as the week went on and every day I felt nauseous. It felt like my pre transplant days again and was a bit of a shock, but at least I knew I just had to get through the week and then once tests were done I could go back on the medication. I had to cancel most things I had planned that week, but it did settle by weekend thank goodness. 

During the test a tube is passed through your nose, along the back of your throat, down the oesophagus and into the stomach and they measure the strength and muscle co- ordination of the oesophagus as you swallow water. The tube is then removed and then another one inserted which has a small probe attached to it, which goes into your stomach and a recorder attached at the other end. You have to carry this around for 24 hours, so it can record what is going on in your stomach. 

Monday was testing day and I really didn't like it. I have had endless bronchoscopies, but they always sedate me for that, this one they wanted to do it without sedation, it wasn't very pleasant and if I'm honest I found it really stressful. I had a touch of deja vu once it was done, walking round with a machine once more with a tube, but at least it was only for 24 hours and not for  three years this time. Tuesday, I was back at hospital again to have it removed. The staff laughed as I came in smiling this time, 'You're looking much happier today now your having it removed!' It was soon out and I was relieved and feeling happy again and able to go back on my Omeprazole. 

I'm just waiting for the results to be analysed now and hopefully may have them back for my July clinic.  I'm still waiting to hear where my pelvic floor operation is going to be done. There is lots of umming and ahhing going on, as my local hospital are a little bit wary of me being a heart and double lung transplant patient, but there you go, I cannot say I'm in a rush to be back in the operating theatre again, so I will let them take their time deciding for now! 

Amongst all the medical stuff and cancelling half of last week, I managed to finish the week on a complete high. Firstly, I found out I'd won Woman and Home's, 'Seize the Day' competition, where I'd written to them about my transplant and how it had changed my life and then I went wedding dress shopping with Sarah, so these last few weeks are not lost; there's lots of positive things happening and I have got a step nearer with some of the medical problems I'm still dealing with, which can only be good news. 

So Monday started with tubes and the rest of it, Friday I'm off to have a full style and makeover courtesy of Woman and Home. (more on that later) It's a bit of a rollercoaster week for stress and excitement or let's just say I'm having a rather 'colourful' week! 

Wednesday, 11 June 2014

We got to June, we got to Suffolk!

The River Deben at Woodbridge 

Last October we had booked to stay in a holiday cottage in Suffolk. Although I was waiting for my transplant and feeling very unwell a lot of the time, we had made a very concious decision to keep on planning things to look forward to. It was having something to look forward to all the time and getting out and about taking my mind of things that helped me to cope mentally and emotionally.  Physically the fresh air and stimulation was good for me too.

Tide Mill

Coping mentally as well as physically both with terminal illness and being on the transplant waiting list is a difficult thing to manage. We are all different and manage in different ways, but one of my coping strategies was definitely to get outdoors, get some fresh air and discover places of interest both old and new.

Snape Maltings
We have always loved photography and doing this gave me chance to keep this up too. If I was then feeling poorly, laid up or in hospital I would have our photographs to browse through and lovely memories of good times when it got tough. Just the happy memories and photos would help keep me going. We were just trying to make the most of limited time I suppose. Rob was always very determined to organise outings and supported me immensely to keep both my mental and emotional state healthy.


If we were going to stay away from home, we used to try and book self catering accommodation so we could cope with all my medication and illness. If I was having a bad day illness wise, we could work around it much easier in our own place and not be tied to meal times and a hotel room.

The wilderness at Shingle Street

Sometimes things didn't go to plan - well quite a lot really-  and I would be ill and plans would be cancelled, but more often than not we would be able to manoevre our way around the illness and get ourselves out and enjoying things within my limits and with the help of my wheelchair.

On the River Ore
Anchors at Aldeburgh
We had been looking forward to spending time in Suffolk, we had visited it briefly before and wanted to spend more time there. This time, things didn't go according to plan at all, as I got my transplant call. We couldn't get to Suffolk as I was still in intensive care. Obviously it was the best reason ever to have to cancel our plans! 

The beach huts at Southwold

While I was in intensive care and still struggling in a coma, Rob instead of just cancelling the holiday carried on our philospophy of making plans for the future and rearranged the holiday for us this June. He didn't even know if I would pull through or not at the time, but in his usual
positive fashion he determinedly believed I would get there, whatever things were looking like.

RSPB Minsmere

So we had got all the way to June, the holiday was looming and at the last minute there were a few hitches with my health, but with the help of my GP, we got ourselves off to Suffolk at long last. It was well worth the wait and as you can probably see we had one very happy and healthy holiday!

Ickworth House

Of course, in my new circumstances, I was able to enjoy my holiday in many different ways than I would have been able to last October and my donor and their family were never far from our thoughts.

I've taken to buying myself a little heart momento wherever I go now. They remind me of my donor and the precious gifts they gave me. This is a tiny handmade porcelain dish.