February Clinic

On Wednesday I went back to clinic for my three month review - well it was supposed to have been three months since my last visit back in November, but in reality I was back just a week after and have been having my white cell blood count monitored with regular blood tests and adjustments in medication.

The white blood cell thing has been going on since last May when it became too low. With adjustments in my medication I was getting back to normal. Then I was taken off a drug - valganciclovir - which I'd been on for my first year after transplant and it went all awry and went too low again.

When your white cells get too low there is nothing to fight infection with so it can be dangerous, therefore I had more adjustments in my medication. Next thing, just before Christmas they got too high - when they are too high, there is a chance the white cells may start attacking your new organs as they react as though your new organs are an infection in your body, so more adjustments. 

I was thrilled at last week's clinic as they managed to get my blood tests back before I left and the consultant checked my white cell count and at long last it was just where it should be, so that meant no changes in my medication.

We've have also been monitoring my blood pressure closely as the majority of patients with transplanted hearts go on to develop high blood pressure, which is obviously a risk factor for heart disease and strokes. It is usually inevitable that patients require medication for high blood pressure. My blood pressure is gradually getting higher, so I have to arrange to have a twenty four hour monitor with my GP next so they can look what it is doing and decide whether it is time to start new medication. 

My consultant told me that 100% of Papworth heart transplant patients are on medication for high blood pressure after a year, so seeing I am 16 months post transplant now, I've done really well to avoid it so far. I've always known that this would probably happen so I am not surprised, I'm more surprised that I've got this far without needing it! 

We had an enjoyable and sociable clinic because we got to meet some friends old and new at the clinic and then when we went across to the canteen we ended up bumping into one of our transplant friends Jacqui, who just happens to work at Papworth. We'd just finished speaking with Jacqui when we spotted our 'PH' friends, Kathy and Michelle - so it was an enjoyable morning. That's what I love about Papworth! 

I was delighted to be given three months until next clinic this time with just the blood pressure test to organise in the meantime. This was short lived though and when my other blood tests were checked, the team phoned to say I need to have more tests because of my Tacro levels and kidney function, so I'm now back in a month's time. 

Luckily, I feel really well thanks to all the careful monitoring of my transplant team and hopefully it is just a question of maintaining the correct balance of the drug combination I need.

I was in the local news again the other week after a reporter phoned from the Hertfordshire Mercury following Grant Shapps' anouncements that the government is going to put organ donation on more forms such as passport applications and oyster cards. They had read an earlier blog of mine and picked up on it because Grant Shapps is a local MP in Welwyn Garden City, Hertfordshire and it was another great opportunity to get people thinking about organ donation.

We have had Valentine's Day too. Rob and I didn't really celebrate Valentine's Day in my pre illness days, as it is a bit hyped up and paying for flowers and cards can be a bit of a rip off. Now we use any excuse to celebrate and I was lucky, Rob bought me a new Pandora charm - the latest one in support of the British Heart Foundation -  so at least some of the cost went to charity and one we fully support at that.

Talking of the BHF - I'm taking part in their DeChox during March to help raise funds for them. My link for sponsorship is below.

Kath's DECHOX

Just returning to Valentine's Day, I cannot let this week go by without mentioning my dear friend Stacie, who has worked tirelessly - although she is poorly - to do everything she can to promote organ donation. She was on ITV's Good Morning Britain, on her local radio and in her local papers. You can check out Stacie's blog with all the links below. Our friend John Fisher supported and enabled Stacie to do this. John runs a transplant charity, 'To Transplant and Beyond', which provides support for anyone touched by transplant and they funded the Valentine's campaign she fronted. Hopefully it has got many people motivated to sign the organ do not register. 

Life is Worth the Fight

To transplant and Beyond

This week's photos are taken on or near London's Westminster Bridge. ©Kathryn Graham

A Good Start to January

It's been one of those quiet weeks getting back to some normality after the Christmas and New Year festivities. Rob and Rose went back to work - I remember how hard that used to be after Christmas, with the cold and dark mornings so don't envy anyone who had to do that this week.

For me it's been trying to get back to my exercise regime and back to healthy eating after all the Christmas excesses. I think that's probably the same for many too. I am prone to gaining weight now with being on steroids, so I'm trying hard to stay at least where I am now and tone myself up a little in the process. I also want to keep my new heart and lungs healthy too. I've been getting back into the swing of doing some gentle yoga and making sure I'm doing plenty of walking and keeping active.

I've also been really disciplined and have spent quite a bit of time on my writing: getting more work done on my book and organising myself with ideas for my next writing assignment. On the writing front I was delighted to get another article I've written published in 'My Weekly' magazine. It is about the morning I got my transplant call and explains about Pulmonary Hypertension, the intravenous medication I was on and its symptoms and then about how my transplant has dramatically changed things. There is also a part on the shortage of organ donors and they have published the links to NHSBT, which is brilliant. Hopefully it may inspire readers to sign up to the organ donor register. 

My Weekly - 6/1/15 Issue

It was also back to medical things too. My problems getting the correct dosage for one of my immunosuppressants, Myfenax, is still going on. It's been over six months of chopping and changing every few weeks now, so it's been back to more blood tests and liasing with the Transplant Team.

Weekly drug diet!

On the Friday evening just before we flew out to New York, the Transplant nurse phoned to say my white blood cell count had gone too high - I had been having regular checks because it had been going too low for months. If they are too high, then it causes rejection, so they wanted to increase my dose of Myfenax this time. The problem was I hadn't got the correct tablets to make the new dose and it was Friday evening and I was going away on the Sunday, so it got a bit stressful.

In the end, after a few phone calls the team decided and reassured me it could wait until we got back and that I shouldn't worry - easier said than done! I was also worried because Rob had had a really bad cold that he hadn't quite got over and as we were going to be so far away from home I was worried I may catch that and become unwell too. As we set off for the airport I had a lot of pain in my eye and when I looked, it had filled with blood. So back home again we went, to check it out, and establishing it was likely to be just a burst blood vessel, we set off once more. I think at that point I would have felt relieved if we'd got to the airport and been told, 'Sorry, but you can't go!' All went well after that though, once I got myself anxiously on the plane, it was a trip of a lifetime and another big milestone, so I'm pleased I didn't buckle out.

Following all that, I started my new dose of Myfenax a few days before Christmas, a prescription from the Transplant Team was ready and waiting in the post as soon as I arrived home thankfully, so we are still monitoring very carefully how things are going. With all the regular checks, I have managed to keep well, while all the adjustments have been going on and that is the main thing. 

I'm not very good at giving blood - third time lucky this week!

I was back at the local hospital for my physio check too and this went well, so I have been discharged and just need to keep my daily exercises up for now.

Lastly, we are getting a grip on the wedding planning front - Sarah and Oli's wedding is in June, so only four and a half months to go - this is all really exciting and getting nearer now! 

It has been another very positive week and a great start to January. 

(This week's pictures are views from Brockhole Visitor Centre in Cumbria - taken during the Christmas break. For more on Brockhole and its gardens and grounds visit my gardening blog below.) 

Climbing Hills!

After being told at clinic no blood tests for six weeks and no clinic for three months, I found myself back at Papworth having blood tests again on Friday! When my blood tests came through after clinic, my white blood cells had jumped from being too low to too high! So I had to be put straight back on to the Myfenax once more, not on the suggested lower dose we discussed, but back on my old dose. So the saga of the Myfenax continues on, with more blood tests now booked to keep an eye on things. 

One of my blood tests is due on Christmas Day and I told the GP's receptionist that even if they are open, I definitely won't be going for it! We had a laugh - I'm fed up with the Myfenax now - so I'm trying to laugh about it. I do know it is nothing to be bothered about really, compared to what I've already been through and what others have to go through. 

We went straight from Papworth to visit family in Lancashire. It was great to catch up with my mum and sister and my sister's family and stop over for a few days. We then drove up to the Lake District. 

We decided to go for a walk on Sunday, it was a very bright sunny day, not one you'd expect for November. There are so many places to visit, it is always hard to decide where to go, but we went to Gummer's How on the south eastern side of Windermere. It's a place we've been with our girls before and as you climb the hill, there are fabulous views. 

The views stretch out across the Coniston Fells, Central Fells and over Lake Windermere and beyond Newby Bridge. From some areas you can see right across to Morecambe Bay even. It was a perfect day to take in the views. 

 The walk starts from a Forestry Commission car park just across from the hill, which is 321 metres above sea level and is only about a mile and a half. Gummer's How is one of the highest foothills in the area though, so I'd forgotten how steep it gets - well for a person with transplanted heart and lungs, particulary the lungs - very steep. So a short walk, but a bit of a challenge for me! 

As we walked the first part through a field and some woodland, the path was just a gentle incline and the views across Windermere were stunning in the sunlight. 

Then came the first leg of the steeper bit...

I managed it though and made it to the next part...

More stunning views appeared, but it was time for a little rest for me as I was getting a bit breathless. We then went on and on and on ... up higher and higher...

I managed to get to the top of these craggy steps, but then I couldn't make the last bit up to the summit. My new lungs were all puffed out and I'd got myself too breathless. It was time to stop and get my breath back, which took a while and I was a bit disappointed in myself. Rob carried on to the top, but I stayed put as I thought I'd pushed myself enough. I didn't like the idea of having to try and get medical help stuck up on a hillside; however, I do like to try and push myself just to see what I'm capable of now! 

While I enjoyed the views, I changed my mind about being disappointed. I thought of where I have come from over the last few years and how before my transplant I would have struggled just walking up the incline on the road from the car park to the gate to the field and realised just how far I had now come, managing to clamber up most of that hillside. I know I'm lucky I managed to get that far and decided I would be proud of that, rather than beat myself up for not getting to the very top. 

This is the view of Gummer's How from the edge of Lake Windermere: when I see this I can see I managed quite a lot really!

Wainwright, the renowned Lake District fell walker, said if you fail to reach the summit then it's time to invest in a pipe and a pair of slippers rather than walking boots. Well I say I did pretty damn good in the circumstances and my walking boots still have a very long way to walk yet! But, yes, I do like my slippers too now and again!

After our little bit of hill climbing, we went down to Lake Windermere, to Fell Foot Park, where we watched the last of the autumn sunshine disappear over the lake and go down behind the moutains. 

Then it was time to get warm and have a well earned cuppa at the Swan Inn at Newby Bridge and drive on to the Strickland Arms for an early Sunday roast dinner. Pretty much a perfect day and as usual there was someone we were thinking of, someone always with me, my donor, who has given me yet another beautiful memory. 

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.

http://www.bobfm.co.uk/news/local-news/knebworth-triple-transplant-survivor-tell-your-family-if-you-want-to-donate-organs/

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! 

Ten Months Post Transplant

Time is still racing away and now we are in August, that means I've reached 10 months post transplant already! What a busy month this last month has been when I've managed to do a few more 'firsts' since my transplant and do things like kayaking and swimming again for the first time in years. I've also had some wonderful opportunities that have come my way such as visiting Downing St and winning the Woman and Home competition. Things I could have never imagined would happen really. 

The sun feels like it has been shining for ages (probably in more ways than just literally) and I don't think I've ever spent so much time out in the garden enjoying those warm balmy nights. 

The feature on my transplant story and seizing the day has now been published in the latest issue of Woman and Home magazine. They are also advertising their reader event 'Seize the Day' on October 29th. I'm really excited about this as I've been asked to be on the panel to talk about my story and making the most of life. Other speakers are Sherrie Hewson from Loose Women and Benidorm fame;  Carole Ann Rice, a motivational business and life coach, who is also a best selling author and columnist; Kathleen McGrath, a sleep expert, who set up the Medical Advisory Service, which provides a helpline for insomnia; Linda Bartlett, another reader who completed the 3 Cities Cycle challenge from London to Amsterdam with little cycling experience before training. 

The magazine, although on sale now, is the September issue and there is something very apt about that as it is the month of my transplant. I'm looking forward to meeting everybody and enjoying a great evening and yet another experience I never imagined I would have. 

Following our trip to Downing St, we spent a lovely afternoon and evening in London, enjoying the sunshine and the vibrant atmosphere along London's Southbank. It was very colourful, busy and lively. I got chance to browse round my favourite bit, the second hand book market and even 'War Horse' put in an appearance down by the National Theatre. It was a lovely end to a hectic week. 

Then it was back to my 'other life' - doctors and dentists and hospital appointments for Monday, Tuesday and Wednesday! So back to earth with a big bump. I was back at transplant clinic on Tuesday and everything was looking good. My lung function is still high and my chest x rays were good and clear. It is always a relief to have reassurance that my new heart and lungs are still doing fine. 

Apparently when I had all the trouble with my mouth a few weeks ago it was because the myfenax drug had lowered my white blood cells and I had become neutropenic. This is being monitored closely now and although the myfenax was stopped for a week, it was restarted and I have to have my dose reduced now so it doesn't keep happening. 

My blood tests were still showing that my white cell count is too low and this makes me even more vulnerable to infection at the moment. I've had to restart another drug again, valganciclovir, for a while just to try and prevent the problems with my mouth recurring again too. I'm having to go back to clinic in a week's time just to have my bloods checked once more and make sure I'm properly back on track and that my white cell count has improved. 

I was also given the good news that my PH tests for my stomach all looked normal so I don't need to have the stomach fundoplication operation. That was a huge relief and weight off my mind as I didn't really want to have to have this done so soon after my transplant and when I already have to have some other surgery soon. I've also been back to the local hospital to see the mouth consultant and they are happy to discharge me now.

The transplant consultant explained that if all continues going well I should be able to go onto three monthly visits to clinic soon as long as my medication is settled.  I will soon be a year post transplant and there will be a lot of emphasis on taking preventative measures for longer term problems that are very likely to arise such high blood pressure and loss of kidney function. 

So ten months on and I'm delighted things are still going really well and I'm still always thrilled and surprised at what I'm managing to do and some of the opportunities that have come my way for some new experiences. 

There have been some very special moments during this last month, but it is still those simple basic things that shock me when I realise I am doing them without thinking about it or struggling. Take for instance when we visited Downing St last week. There was quite a group of us going up those famous stairs with all the portraits of the Prime Ministers on the wall. Everyone was a bit in awe of them and admiring them, but all that was really going through my mind was, 'Oh my goodness I'm climbing up the stairs really quickly!'