Small Steps

It's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.

Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.

By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become. 

A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward. 

My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here. 

I'm looking forward to a quiet and relaxing Easter weekend with my family and just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy. 

Sunshine and Snowdrops

Snowdrops and sunshine at last!

I was back at the Transplant Clinic again this week for all the usual tests and this week I escaped having to have a bronchoscopy, so it was just a morning visit. After all the tests, I saw the consultant and transplant nurse and they said they were really happy with me. My lung function is now up to 90%, it has got better each clinic visit and my new lungs looked good on the x ray. My last bronchoscopy results were looking really good and the part of my windpipe that they have been watching closely for the last few months has now healed nicely. They explained I wouldn't need to have any more bronchoscopies for this now as all is fine, so that was fantastic news. 

The snowdrop walk

They are still tweaking my medication and have stopped another drug called Nystatin, which I had to take four times a day, so I was pleased with that too. They are also planning to reduce my steroid drug, Predisolone, once they are happy with my Tacro levels and that my Prograf dose, which they adjusted a few weeks ago, is correct. I am just awaiting a phone call following my blood test results then hopefully it will reduce.

Crocuses enjoying the sun

They also explained that they need to start giving me more medication to help my transplanted heart and they will be focussing on this a little more now. This is for preventative reasons and not because there are problems with it. The arteries in transplanted hearts can become furred up quite easily, this isn't because of diet or anything, they just do for some reason, so they have prescribed me a statin for this, Pravastatin. We had a bit of a laugh about this, because Rob has just been prescribed a similar drug for his cholesterol, which, because of genetic reasons, is high. These drugs have to be taken at bed time, so we had a bit of a joke about how we would be able to share them and take them together when it was time to go to bed! It all seemed very apt, as it was on the radio and in the press that day saying how doctors have been given the go ahead to prescribe statins to help prevent strokes and heart attacks and there has been a lot of debate about whether this is a good or bad thing. I think in our cases, it can only be good!

Peeping Snowdrops

They also explained that they will probably need to introduce blood pressure tablets too at some point, but I seemed to get away with that one for now!  It seems to be a case of losing some drugs and then gaining some more. I'm still on 18 or 19 tablets a day, depending on what day it is, but it still feels a lot easier than my Pulmonary Hypertension days and the intravenous drugs. I just rattle now instead!

A little bit of colour in all the bleak!

So all in all it was a good visit, all is going well and I now don't need to go back to clinic until the middle of March, when I won't be too far off being six months post transplant. I am getting on for 5 months post transplant now and don't know where the time is going.

We decided to enjoy the rest of the day after clinic and went to a pub called the Poachers in Elsworth, which is near Papworth for lunch. This was a pub that my family visited while I was in hospital following my transplant. The transplant nurses had recommended it while they had long days and hours visiting. It was nice to see where they had been as they keep telling me stories about the nice pubs they had found. I think I have one or two more to visit yet! 

A dwarf iris flowering in the sun

While we were in the pub, the weather turned very nasty and the gales started blowing up again as well as the rain setting in yet again, so we had a bad journey back home and were glad to get in and batten down the hatches again. We had been planning to go to the Lake District for a few days and had already packed, but seeing the forecast of gales, gales, rain, rain and more storms, we decided to abandon our plans and stay put. This is the second time we have been all packed and ready to go to the Lakes and then had to change plan because of the awful weather. We aren't complaining though as we are having it very easy compared to thousands of people who are struggling with floods. 

First signs of blossom

Today has been the first day of the week that we have had some sunshine, a little bit of respite before the next storm sets in tomorrow. We went off to Benington Lordship Gardens to have a look at the spectacular display of snowdrops and winter flowers. I felt determined to find some colour amongst all this dismal grey we keep having to put up with! Benington Lordship is a seven acre garden standing on an ancient fortified site and is famous for its display of naturalised snowdrops, there are over 200 snowdrop varieties as well as other winter flowers.

Hope you have enjoyed the pictures taken at Benington of the flowers and the little hint of spring, it must be somewhere hiding nearby and ready to pop out! Come on spring, we are all ready for you!

To a Snowdrop

Lone Flower, hemmed in with snows and white as they

But hardier far, once more I see thee bend

Thy forehead, as if fearful to offend,

Like an unbidden guest. Though day by day,

Storms, sallying from mountain-tops, waylay

The rising sun, and on the plains descend;

Yet art thou welcome, welcome as a friend

Whose zeal outruns his promise! Blue eyed May

Shall soon behold this border thickly set

With bright jonquils, their odours lavishing

On the soft west-wind and his frolic peers;

Chaste Snowdrop, venturous harbinger of Spring,

And pensive monitor of fleeting years!

Wordsworth

'Harbinger's of Spring'

Latest Clinic and Bronchoscopy

I started off the week with another clinic visit and yet another bronchoscopy. Fortunately all went well - there is always this sense of worry in the back of your mind that they will find something isn't quite right or something has deteriorated - and I was able to come home really pleased and relieved once more.

All ready and waiting to go to theatre! Wrapped up warm, it's freezing in there!

The Transplant Team have been paying particular attention to a join they made in my windpipe during my transplant operation. This is taking time to heal and they have been worried about the way it is healing, as it looks like it may possibly cause some narrowing in one of my airways to the lung. Over time this narrowing could worsen and cause the function to decrease in one of my lungs. This is quite a common problem after lung transplantation and there are various remedies to stop this happening and keep the air way open such as: stent procedures, placing a small 'balloon' in the windpipe or actual surgery. They have been examining and monitoring this join regularly, hence all the bronchoscopy procedures I have had, but they have now said they think it looks much better and they won't need to watch it as closely now or do anything about it as yet. That was a huge relief and I was delighted at the news.

Arriving back!

They also wanted to check how this particular problem was doing before they could make a decision on reducing more of my medication and as they are happy with things for now, I was able to stop taking another of my medications, Itraconazole. This is an anti fungal medication and it is yet another one of the tablets I haven't been that keen on. You have to take it around six in the morming before you have eaten or drunk anything, so your stomach is still acidic and you have to take it with an acidic drink such as cola or orange juice. I started off taking it with cola, but big tablets, fizzy drinks and six in the morning didn't work very long for me, and together with a cough this routine began making me sick and nauseous. So I then tried with fresh orange, this worked better, but still wasn't brilliant. I don't mind a glass of fresh orange, but not as my first drink at six in the morning with two huge green, plastic looking tablets! So I was delighted when they said I don't need to take this anymore - now I don't have to wake at six if I don't want to, I don't feel nauseous after forcing tablets and drinks I don't want down me and I can just have a normal cup of tea when I wake up if I want to! More normality!

Time for a sleep and a bit of the old oxygen to help along the way!

In my mind it is also one drug less in the many I have to take and the less I have to take, the better. There is only one little drawback at the moment though in that withdrawing the Itraconazole, it may disrupt my Tacrolimus levels. Tacrolimus is an anti rejection drug and has to remain within a certain range in your blood stream to be effective. The range is calculated on your weight and regular blood tests are undertaken to ensure the correct levels of tacrolimus are maintained. So I now have to go back to going to clinic once a week again while the team monitor the effects on my Tacrolimus levels and get them nice and steady again. This doesn't worry me though - it is a small price to pay to come away from clinic and be given a clean bill of health - and it is part and parcel of getting steady and stable and even better post transplant. 

I was lucky enough to meet another lung transplant recipient on this visit, who was twelve years post transplant and doing really well. She had also had similar 'windpipe' problems to me, which had now been fixed. That was so encouraging for me and gave me lots of hope for the future. 

I have met many transplant patients now with positive stories to tell and I'm starting to think, 'My goodness, can I really begin to think further ahead to a long term future? Perhaps I can!' Twelve years on for me and I will be thinking about my pension and what should have been my real retirement! I had stopped worrying about pensions and what would have been a 'normal' retirement long ago, but maybe now I'm going to have a rethink! Well it's a good problem to have worry about! 

View from the ward. Is that my pension pot at the end of the rainbow or just a pot of gold?

Meanwhile, Rob has become something of a local celebrity. Every time he pops down in to our village, people are asking him how we are doing: he has been stopped in the butchers, the newsagents, the chemists and the doctors. The newspapers and local radio have obviously done a good job!

Have Yourself a Merry Little Christmas ...

The week has been a really good one. I've managed to get together and catch up with lots of friends and we also felt it was time to try and do our bit again to promote organ donation, having now had a good few weeks recovering and feeling better each week.

I'm beginning to feel like life is busying up, settling down and becoming much more normal again in many ways. As a family we are feeling full of hope that the New Year is going to be a good one - and that is one of the big differences transplant makes to your life, your hopes, dreams and expectations increase each week, instead of dwindling before your eyes as they did before transplant. My quality of life was diminishing and the odds felt like they were going against me, that is all different now.

Firstly, I had an hour or so out with the girls on Friday night, it was so lovely to see everyone and a little surprise for some, my friend Lesley had hatched a little plan for me to turn up and surprise all the others! It was great to be out and about again with friends. 

Then I met up with more friends on Tuesday, Kath and Michelle and my two favourite little girls Emily and Sophie, who I had been so looking forward to seeing after my transplant. Unfortunately, they had all been laid up with various infections, so they had to stay away for a whiile, because of the high risks I have to infection after my transplant. So it was really great to catch up at long last and see them all and enjoy the children - and lots of cake and tea! I got a beautiful rose bush for the garden to celebrate my transpant, very aptly called Joie de Vivre and a lovely little cake stand for my cup cake and we all exchanged some Christmas pressies. 

Then Wednesday it was time for another clinic visit to Papworth. This was a really good visit, after worrying that I might need more surgery, they had decided that they are going to carry on monitoring the situation and give me another bronchoscopy and a CT scan in three weeks time so they can keep a close eye on things. They are thinking there may be no need for a biopsy on my windpipe or surgery now, so we are hopeful and keeping fingers crossed I'm not going to need it. I will have my lung biopsy to check for rejection again in three weeks time too, so will be staying in hospital for a day or two. Everything else was looking fine and it was great to come home reassured again and be given three whole weeks off hospital to enjoy the Christmas festivities. 

At Papworth, I also got to meet up with a few patients who had had their transplants the same week as I had mine and it was great to see that they are all doing really well too. We also met up with Bernice, who after a long wait and being extremely poorly and hospitalised on and off for months, got her new lungs only two weeks ago. Only two weeks post transplant and she met us in the canteen for a cuppa and looked fantastic and best of all she wasn't on her oxygen! It was so good to see her and meet her lovely mum and grandad too. 

So a really good and very positive visit to Papworth on all fronts. 

The day got better, on my return home, I had a lovely visit from Rose's best friend, Lisa, she has been our daughter number three since she was about two and it was so good to hear all her university stories and exciting plans for next year. 

Rose eventually came home at the weekend, we had to delay bringing her back from Bournemouth for quite a few days because she had a sickness bug and of course it would be dangerous if I had caught it. So we had to make sure that it was quite a good few days that she had been clear of any symptoms before we could bring her home. It was hard knowing she was a long way away from home and poorly, but her housemates rallied round and looked after her until we could get her home. Rob had also come down with a bad cold the other week too and we had to take extra precautions until he was clear, so I could try to avoid it. I realised though that I was quite accepting of all this and not getting too frantic and was quite relaxed about it. If it had happened in the earlier days I know I would have completely freaked out, so I feel I've moved on a little bit from those first few weeks and I realise I'm beginning to get much more confident living with my new heart and lungs.

It's super to have Rose back and coming and going with her pals. Best news ever is that she has got a placement near home for her third year, which she had an interview for this week, so we will have her back in summer for a whole year or so. David has also got his placement for next year working in London, so will be living at home too, so we are expecting a livelier household again next year. That will be so good! I feel we are all making plans and moving on with our lives again after all the upheaval.

Thursday we had a visit from both our local radio station, Jack FM and the Welwyn Hatfield Times, our local paper, so we could help promote organ donation. It worked well, as organ donation was back in the main news, both in newspapers and on the TV, with Will Pope's and Bernice's story being revisited by ITV and national papers. I want to thank ITV so much for keeping organ donation in the news and helping us to promote the cause. I have a few close friends still waiting that awful long wait for transplant, because there is such a shortage of organ donors. I know how difficult, stressful and frightening it is to go through and live each day both waiting and hoping. 

Our Jack FM interview:

www.106jack.com/news/local-news/knebworth-transplant-patient-improving-day-by-day-after-two-year-wait-for-organs

Watch out for our newspaper article in my next blog.

We need to keep promoting that there is still a great need for more organ donors. Still only a third of people who would accept an organ if they needed one have actually signed up to the organ donor register. Only 4% of people give blood too, the rest of the population relying heavily on their generosity. When I had my transplant, I was given blood and I also needed to have blood platelets before they were able to remove the balloon pump that had been supporting my new heart. Again, I have been helped on this journey by complete strangers.

We finished Thursday off with an outing to Prezzo's for dinner with the family. Again, another lovely ordinary outing after a busy day and it felt good. Some days I'm beginning to notice that I've got much more energy than I used to have, another step in the right direction.

Friday morning and I rounded my week off with my first visit to the hairdressers since my transplant, an ordinary thing for most I know, but yet another big step for me, albeit I could only manage a dry cut, but I got there at last and feel a lot better for a good haircut! More normality! 

So apart from the Papworth bit and the newspapers, things felt much more normal and settled and already and so soon, getting so much closer to how life should be. When I first knew I was having my transplant, I had thought to myself I would be happy if I just got home for Christmas, but here I am having been home now for nearly eight weeks and life is getting so much nearer back to normal again. Now I've had another good clinic visit and been given three weeks away from hospital we are settling down to enjoy a wonderful Christmas. 

Yes, I am, pinching myself yet again...and dreaming about just what the New Year is going to bring, my life has been changed forever, starting with a phone call and then followed by a miracle, in just one day. What is that song? 'What a Difference a Day Makes - 24hrs!' All this, thanks to my donor and the selflessness of their family, they are always in my thoughts, the wonderful changes in my life wouldn't have happened if it weren't for them. 

If you can do one good thing this Christmas and you haven't already, please sign up to the organ donor register, the difference that can be made to someone's life is a miracle, the link is given below. 

As this is my last blog before Christmas, I would just like to say once again a massive thank you for all the support and kindness you have given me during this last few months, it has really helped me get this far. I wish you a happy, wonderful and peaceful Christmas and hope that you all have a healthy and happy New Year. For all those facing that long and difficult road waiting for transplant, I truly hope that 2014 is the year for you and it brings you your very special gift. 

Home Again, Home Again!

Getting back to hospital on Sunday evening didn't feel so bad. I was still in the same room, I hadn't been sure whether I would be or not, so it all felt very normal and secure and I knew what was what. I had a gruelling few days ahead that if I'm really honest I wasn't looking forward to.

Monday started quite easily and I was shown how to take my own lung function tests. When the man came to show me how to use the little hand held device, which records it for you, we recognised each other. I had met him regularly as he had done lots of my lung function tests when I was under the PH team, so it was good to have someone I know show me. Using the little device is easy, you just take a deep breath and blow into it, you have to do it 3 times and then record the best reading in the famous little blue medication book. The lung function test has to be done every day, along with taking your temperature and weighing yourself. All these things can give indicators that you may have infection or rejection and you may feel alright and not know. If you suddenly gain a few kilogrammes, then you have to phone the transplant team; if your temperature is suddenly higher, then you have to phone the transplant team; if your lung function suddenly drops more than ten per cent, then you have to phone the transplant team. They drum it in to you, you do not sit and wait to see if things improve, you phone them straight away. This will be a bit of a learning curve for me as I'm a bit of a wait and see how I'm doing person, but I know I will not have to hesitate or it could be life threatening. I guess you learn to live with this. 

Lung Function Monitor

Tuesday came and for me this felt a big day. I had been getting myself quite worked up about it since Sunday, it was time for another bronchoscopy and a biopsy of my new lungs. The biopsy would show if there was any acute rejection. Just being newly transplanted that word 'rejection' fills me with complete horror, I think it will always scare me, but I hope over time I will be able to make an easy peace with it and live with it. They explained to me that it is quite normal to find some rejection at this point and that if this happens they will treat me with intravenous steroids for a few days then all should usually be fine. This reassures me, I have every faith that the transplant team will be able sort out whatever happens to crop up, I have to have. It is all done and dusted and I'm a bit sleepy. The plan was to go back to theatre an hour later to have my Hickman Line removed, but it was postponed at the last minute until the following day and I was glad, one procedure like that is enough for one day. It was PH clinic day and I had a lovely visit from Denise and her husband, which cheered me up. Ruth's husband popped up with a card and pressie too and I was disappointed I had put her off visiting as I had expected to be back in theatre, so I missed meeting Ruth unfortunately. I can feel a trip to Norfolk coming on when I feel better! 

The Famous Transplant Bible

The results of the bronchoscopy and biopsy would be through later in the day on Wednesday, and I was told if everything was fine, I would probably be able to go home. So I both dared to hope and dared not to! 

Wednesday came and I was taken back to the operating theatre to have my Hickman Line removed. This felt very unreal, the last time I was wheeled in there, it was for my transplant, I felt unnerved and also scared as I didn't know if this was going to be painful or not. Tuesday had felt difficult as they had had to make many attempts at putting a cannula in before my biopsy, which had been painful, three different people tried several times, my veins were just saying enough is enough! Wednesday they needed blood tests, same again, several attempts. I never used to have a problem with this, but it was all getting painful and my arms and hands were black and blue, so I didn't really feel like facing much more at this point. Probably very pathetic I know compared to what others have to go through and that's what I kept telling myself. Removal of the line wasn't too bad, it just hurt when they injected the local anaesthetic, there isn't much fat for injections on your chest and neck! Then they calmly talked me through as they did each bit. It was soon over, I had to have stitches, so I've acquired yet another war wound! 

The most significant thing for me was that the removal of the Hickman Line finalised the removal of Pulmonary Hypertension. It is all gone now, there is none left and nothing of it anymore and I am more than daring to hope for the future, hoping to go for a walk, hoping to walk round the shops, hoping to feel better again. When all these chest wounds have healed I'm going to stand under a shower and sing! One of the nurses found me in tears, I just said I'd had enough. How could anyone, unless you have had to have this medication and illness, and there are only a few of us, ever begin to understand what the moment feels like when it is gone?

The nurses worked hard all day on Wednesday to make sure everything was ready for me if I was able to go home. The Transplant Doctor came to visit me around 5 o'clock with a massive, beaming smile and told me excitedly that I had no signs of rejection and therefore I would be able to go home, which was brilliant news. Unfortunately, as well, they have found a problem with one of the 'joins' they have made to my new heart and lungs and they want to keep a close check, so I will have to have another bronchoscopy in a week's time, which they would not normally do at this point. I've also got a persistent, awful cough, which could be connected, but again, in these early stages it is hard to tell. I am going to be admitted to the day ward, so they can do all the checks they need. I am not going to worry about this, they will have had to deal with this type of problem many times before I'm sure. I'm just going to get myself home, get myself fitter and build myself up more, ready for when I go back. 

So Wednesday evening and it's home again, what a lovely feeling, this time home properly ready to start a whole new journey and new life after Pulmonary Hypertension. 

Welcome home!