Just Visiting

One big step I've been aiming for since my transplant is to feel well enough to go and visit my mum in Lancashire, meet up with my family and visit the Lake District. I didn't really believe I would manage any of this until after Christmas, but I kept having an overwhelming urge to go, especially as it was just one year since I lost my dad and I wanted to spend time with mum. I made up my mind that I would give it a try - I reasoned I could have had to travel that far and back just to have my transplant or attend weekly clinics, like many other patients have to who go to Papworth, so therefore I should be able to manage the journey. We set off on Sunday when we knew the traffic would be quieter and planned our route carefully with plenty of stops.

We stopped off in Lancashire first and stayed with my mum, we had a lovely family get together and met up with my sister and her family and I got chance to spend lots of time with my gorgeous neice Ruby and my very special nephew Oliver, who both really lifted my spririts.  It was so good to see them all. I did my usual trick of pinching myself to check it was really happening! 

We then went on to the Lake District, where we met up with Sarah and Oli for a few days. There was so much I wanted to see and do up there, but I was very tired by now and knew I would have to pace myself. We managed to have a little lookout just for an hour or so each day, just going to one or two of our favourite places and driving around taking photographs. It was just so nice to be back in Cumbria again and spend time away relaxing with my family, when I hadn't really thought it would be possible so soon after my transplant. Again, I was doing what is becoming a common occurrance and pinching myself that it was really happening. We had a good catch up with our neighbours, it was good to see them again so soon too. On Wednesday, we had a lovely visit from our friend Sally, who drove all the way up from Leigh to see us and we had a really good chat and catch up over a few coffees. Hopefully we will be able to do that again soon in the near future. 

Thursday, we went back down to Lancashire and stayed over with my mum again for an evening and met up with more family, before we headed back home on Friday. Although I had to really pace myself carefully and take lots of rest, and once or twice I did come close to calling the Transplant Team for reassurance - it is a bit unnerving to be so far away - it was a really good week, we got to see lots of family and friends and it felt a big achievement to make that first journey away from home and to manage it so soon after my operation. I would have never believed it possible even just a few weeks ago. 

It felt funny going away and not having to phone the Transplant Team and inform them of all our movements and timings while we were away. Suddenly we can just take off again when we like and do what we want without having to tell someone, just like old times; it felt odd not to have my transplant case in tow just in case the call comes while we are away. I have to admit though, I still find myself putting my mobile by my bedside at nights, just in case I get my call and then having to remind myself, 'Mmm you've already had it, you really don't want another one!' I also keep looking for my pump and line especially in the night in bed, because I was always conscious I might pull it at night and then I suddenly remember it isn't there anymore; habits all relentlessy built up over the last few years that really need to go now! 

Hopefully we will be going back soon and I might be able to do even more next time. I'm hoping that I might manage a really good walk one day in the near future and I'm still dreaming about taking my kayak out on Lake Coniston next summer... watch this space! 

Medication Time!

Another week has passed and this week I've tried really hard to start getting out and about a bit more and back in the real world and land of the living. We have just done it in small steps around what I feel able to cope with, as some days are better than others still and there is a lot of medication to work around, but there are always some good parts of the day and I want to make the most of these good bits as much as I can.

So after a few days resting and catching up, following last week's couple of days in hospital, I have managed to make some short trips out to get on with the Christmas shopping and visit a few cafes along the way for a cuppa or two. We went to Prezzos for dinner one night and watched the Christmas lights being switched on in Welwyn Garden City, which are looking very pretty and festive. 

On Friday we needed to go back to Papworth for some more drugs, as I have got another extra week off hospital before I go back in for a couple of days, but I didn't quite have enough medication at home to keep me going for an extra week. As this was a fleeting visit and turned out to be a gorgeous day, I decided to be a bit more ambitious and we visited Wimpole Hall, a National Trust place nearby, which we know well. 

We went for lunch there and I tried to have a walk for a while, but had to give in partly because I was flagging after the early start and had already walked around a bit at the hospital and partly because it was cold and a bit windy and my new lungs really didn't like the cold air that was hitting them and it made me breathess. Luckily we had the trusty wheelchair and Rob pushed me round the gardens. They still looked pretty, although it is the end of November nearly. We took the cameras as I wanted to capture the last of the autumn before winter really sets in. I feel like I have blinked and missed most of autumn with being in hospital, so it was wonderful to just be out in the lovely sunshine, fresh air, watch the birds and see there were still lots of trees still in their golden splendour. 

I also wanted to check out if I could still use my camera with my newly acquired shaky hands from using the Prograf drug. I was really pleased as I was able to manage it and it felt great to be out and about taking photographs again, just like old times pre transplant! Again I had to pinch myself that in such a short space of time and after so much turmoil, I'm back doing some of my favourite things already!

We finished off with a lovely afternoon tea and a visit to the gift shop to do a little more Christmas shopping. I don't think I've ever been so organised with Christmas. I think it's just me wanting to be organised just in case I land myself back in hospital, but more than ever I am just enjoying and savouring life and it just happens to be that Christmas time of year that I love. It is going to be a very special one for our family this year though, because of the wonderful changes that have happened in the last few months thanks to my wonderful donor and their family, I will never be able to thank them enough.

Back home again and it's time to check out my goody box from Papworth. So where am I at with all this new medication and its regime? Well there is a lot of it, mornings are very heavy going. 

I start at six in the morning with tablets called Itraconzole, an anti- fungal drug, which have to be downed with a glass of cola. I must say I really don't like having to have the coke at this time of day, it doesn't go very well with all the coughing that goes with my lung problems and I would much rather be having a cup of tea, but it won't last forever, this one is just for six months and I've already done two of them! Once a week there is Alendronate, a drug to protect the bones, oesteoporisis is a side effect of the anti rejection drugs, this has to be taken at least half an hour before breakfast, downed with a big glass of water, sitting upright or standing for half an hour. I do this on a Tuesday, so I don't like early Tuesday mornings, too much drinking stuff that I don't really want to have to drink, no room for a cup of tea and it's not even breakfast time yet! Thank goodness it's only once a week and the coke will be going! 

Next on, it's getting to 8 o'clock, time for the first round of nebulisers before breakfast. One is called  Amphotericin, an anti-fungal nebuliser, which has to be made up using syringes, needles, water and powder from a phial. This happens three times a day, morning, early afternoon and before bed. I haven't quite got rid of the syringes and needles yet just like my pre transplant days, but this should stop after three months post transplant if I'm lucky and I've already done two months. So not long to go and this time I only have to breath it in, not have it intravenously! All the Amphotericin needs to be stored in the fridge too, so we have had to find a spare shelf in there to accommodate it. The other nebuliser is just a salbutamol one to help with my cough and clear my chest, no mixing up and syringes, you just pop a small phial of ready made solution into the nebuluser, now that's a bit better! This one is again three times a day, but hopefully due to stop very soon.

Breakfast time and it's another nine tablets, Myfenax, an anti rejection drug, Myfenax is taken again at dinner time;  Valganiclover, an anti viral drug; Co- trimeazole, an anti biotic; Omeprazole, an anti acid; two calcichew, for osteoporosis, these are very pleasant - a bit like refresher sweets and then Furosemide and Amiloride, which are diuretics - yes diuretics, did I really believe I would get rid of the Furosemide? Three and a half years of it now and still counting... hopefully this is one that will be going! Every Monday, Wednesday and Friday another tablet is added to this concoction, Azithromycin, another anti bacterial drug. After this little lot follows Nystatin, anti fungal drops for your mouth and throat, these are quite pleasant, they taste a bit like Calpol! The Nystatin is taken every meal time and at bed time. 

Two hours after breakfast follows the next round of anti rejection drugs, Predisolone, a steroid and Prograf. Prograf has to be taken again around bedtime, twelve hours later. So once that little lot is over and breakfast is over and done with, the day is relatively free, apart from the few remaining tablets with dinner and at bed time and the nebulisers in the early afternoon and again at bedtime, so the day gets easier as it goes on. It's surprising how quickly you get used to this little lot and it is managed with the little blue book, where you record everything down. It sounds a lot and it is, but for me it is so much easier than dealing with the intravenous drugs I used to have to have and the good thing is, it will reduce over time and get easier and on top of this I should feel more recovered from the operation to cope with it all. Also I know compared to some other transplant patients, this is really  an average amount of drugs and others have to contend with much more, we are all very different in our needs and side effects of the anti rejection drugs. 

So that is week seven, another good week and more big steps and better still no hospital for well over a week yet, so I'm planning and hoping for week eight to be another good one ...

Thank You

Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you! 

This blog is a massive big thank you to everyone who has supported me and helped to get me this far.

It has been seven weeks now since my transplant, although it still all feels very new, and time is racing on towards Christmas.  I've been in Papworth just for a couple of days for a six week check to make sure that everything is still going well. At this stage they always check to see how things are healing and that there are no signs of rejection and I'm delighted that my lung biopsy shows no signs of rejection so far. Things are healing pretty well, but they are still going to keep a close watch as I still have a few problems, although we are expecting them to resolve as time goes on. I'm happy they are monitoring things so closely, it is very reassuring. I have been given a week off clinic and don't have to go back to hospital for two whole weeks, which is brilliant news.

Obviously my family had waited with baited breath to hear if all was good news and I would like to thank all of them for their unstinting support, which just goes on and on. Thank you Rob, Sarah, Rose, Oli and David and thanks to my mum, my sister Jayne and her family and my brother Paul and his family. Also thanks to all my wider family and friends of my family, who sent messages of support and followed my progress and supported my family when things were difficult for them. 

I was admiitted back on to Duchess Ward last week and felt like I had come back home after being on various wards all over the hospital. Duchess Ward is where I used to stay while the PH team looked after me and I feel I know everyone and they know me. It was so nice to see everyone and they made me so welcome and wanted to hear all about my transplant and how I was getting on. 

So I will go on to thank the staff at Papworth. There are so many staff to thank, starting with the PH team and staff on Duchess Ward who looked after me for more than three years. Then there is the Transplant Team, who monitored my progress carefully for the last two years, helped me and my family through the transplant operation and are continuing to care for me now. There is also the highly skilled surgical team, who undertook the operation, and then there are the wonderful teams on the Intensive Care Ward and Mallard Ward, who looked after me post transplant, along with the physio team, radiologists, dieticians, phlebotomists and respiratory team. I hope I haven't forgotten anyone and I know I can't ever thank them all enough for their care and all they have done for me. 

The response from all our friends when I had my transplant has been overwhelming and again, I don't really know where to start thanking everyone for their endless stream of good wishes, cards, presents, plants, flowers and the constant and never ending messages of support. Your support has really helped carry me through all this, how could I ever have got down for even one minute when your messages of support just kept coming and coming? Your support has just spurred me on and on and still does. So thank you to all my friends, old friends, new friends, PH friends and transplant friends, for just encouraging me on and on and helping me to get this far. You really did help me and have given me more determination to keep getting better and better. Even this morning, yet another bouquet of flowers arrived and more cards, just when I was feeling a little sore, tired and sorry for myself after being prodded and poked in hospital for a few days. So, once again, the 'sorry for myself' bit was very short lived and after a good rest I'm now back on the case of the mammoth Christmas shopping and wrapping expedition! 

Of course I now come to my donor and their caring family, who made the bravest decision anyone can ever make and gave me the greatest gift ever, the gift of a new and transformed life. A life now full of hope and dreams for the future and a life that has already begun to change markedly for the better even in this early stage. There isn't a day goes by where I don't think of them all and what they have given me. Sometimes I will just be doing something very ordinary and then it will suddenly strike me what an extraordinary thing has just happened to me and I have to stop and pinch myself that I have been given this new chance in life. The ordinary versus the extraordinary, sometimes I feel like a walking miracle and I cannot quite believe my transplant has actually happened. There is just such a wide gulf between being abe to get on with and live ordinary every day life and what has just happened. There just aren't words that can ever express my gratitude or my family's gratitude for this wonderful gift. 

Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you! 

My First Visit to the Post Transplant Clinic and Week 5

I thought a post about this may be interesting, especially for those who are waiting for their transplants and just like me won't really have a clue what to expect.

Once discharged from hospital, having a transplant is not like any routine operation, there are continuing risks of getting infections because of the immosuppressants that are needed to be taken to stop your body rejecting your new organs; the level of immunosuppressants also needs to be monitored to ensure rejection is under control and tests need to be routinely undertaken to check for rejection. It is not always obvious that rejection or infection may be happening, so us patients have to monitor our own weight, temperature and lung function every day as well as being monitored by the hospital. Having a transplant requires a lifetime commitment to medication and ongoing care. There is a swap of one set of medical problems for another, but hopefully with it comes the chance for a much better quality of life than you may have been having before and a better prognosis and that is why many patients dare to take the transplant option. For many people it is a life changing experience. 

When I arrived at my first clinic, it felt a bit busier and more bustling than the pre transplant clinic. Everyone seemed to know exactly what was what and I felt a bit like the newbie who didn't have clue what was going on. Rob said it felt like taking me to big school! There seemed to be a queue for the blood tests, staff were calling if there was anyone for an ECG or if there was anyone for lung function tests. To be honest I didn't have a clue what I was waiting for, so waited for someone to call me. The nurse called us pretty quick and explained all that goes on. Basically as a heart and lung transplant patient I need to have an ECG, lung function tests, x ray and blood tests each time I come. Everyone arrives at a similar time and you just have whatever test you need as you wait, so if someone calls 'anyone need a lung function test' and you do, you just go and get it. If there is a queue for blood tests, then you might pop and get your x ray or ECG while you wait. Pretty quickly I had all my tests done and then you have to wait a litte while to see the consultant to discuss results and any problems or queries. 

The blood results come in the following day, if all is ok then you don't hear anything, if any medication needs adjusting, such as the Prograf (tacrolimus), the transplant nurse phones and tells you what adjustments need to be made. So all pretty much simple and straight forward stuff, similar to the pre transplant clinic, but you organise yourself and take responsibility a bit more. 

It takes the whole morning more or less, my visit took a little longer as I needed a few extra things doing, such as having some stitches removed and needing some extra medication from the pharmacy. I also had a bronchoscopy booked for the afternoon, which is not usually routine for week four of your transplant, so they needed to put a cannula in for me too. 

So finished and done at the clinic, everything looking fine, it was off down to the Thoracic Day Ward for me, a place I know well from my Pulmonary Hypertension days. I like this small homely hospital for that, it makes you feel at ease knowing where you are going to be next and having had three bronchoscopies already by then I felt at ease what to expect for that. I was just bushwacked after an early start and long morning and it still being early days after my operation. Having a bronchoscopy means 'nil by mouth' from breakfast, so I felt starving too. I knew I must be getting better, because a week ago when I'd had this done and been 'nil by mouth' I didn't even feel hungry! 

A bronchoscopy is nothing to worry about either, I was scared when I went down for my first one as I didn't know what to expect and I don't really like the thought of people shoving things in my mouth and down my throat. They talk you through everything and everyone is kind and caring. It's always been the same staff helping too, along with the doctors  and consultants who by this stage you are getting to know well and feel very confident with. They spray your throat a little to numb it, which isn't so bad and tastes a bit like banana and then they give you an injection, this just sends me off to sleep and I know nothing of what goes on. It may be a different experience for others. I usually wake for a bit when it's done and then sleep again for an hour! So seeing as I seem to be having a lot of these at the moment, I don't worry about them at all anymore.

Although it would be good not to have to keep having these done, there is also something very comforting about the fact that the consultants are keeping a very close eye on everything, helping me to clear my new lungs while they are healing (that has been a major struggle for me at the moment and is a persistent big problem, which is ongoing) and they have also been checking that everything else is healing as it should be. I have not minded having to have a few extra bronchoscopies whatsoever to help me with this. They have explained very clearly to me why I have this problem, which is helpful for me to understand and helps me to see that things will improve. It is all to do with the wounds inside me healing up and swelling from the operation itself. Also, as a heart and lung transplant recipient I only have part of my own windpipe and the other part is from my donor, this means that nerves have been severed, these nerves normally send messages to help you cough. So I cannot cough as well as normal at the moment, but should learn how to manage this over time. As the wounds heal and the swelling recedes things are expected to improve for me over the coming weeks, which I hope will then be another huge step forward. 

After a day back in hospital like that, I found myself really tired for a few days, so just followed what my body was saying and rested plenty. I was also really pleased, happy and reassured that everything is still going well. When you first go home, the hardest thing is probably feeling a little vulnerable after you've been surrounded by doctors and nurses all the time, who just step in if things feel wrong. 

Suddenly you are then at home without this support close to you and you can feel a little bit edgy and nervous. I think coming home so soon added to this, although at the same time it was absolutely fantastic to know I was doing so well that I could come home less than three weeks after my operation. I think it is a matter of finding your feet and building up your confidence that you can cope and this begins to feel a bit easier as you begin to feel a bit better too. It is good to go back each week and get some reassurance though. It does help with your confidence to get on with your new life and  you know the team are always available on the phone to help too and I have had to ring them a few times and they have been really helpful and reassuring, however silly or small the problem. 

This week I've also had a very successful visit to my GP, thanks to a very lovely and understanding receptionist at my doctor's surgery. My previous GP, who knew all my medical history has left the practice and it was a case of making some proper contact again with a new GP, who would be able to fully understand my new complex needs and medication. When I went to see my new doctor, he had already spoken to the team at Papworth and we managed to organise who would be prescribing me what when I need new medication. Some of the medication is very expensive, so Papworth will prescribe me some and the GP is going to prescribe all the more routine stuff. Another big thing sorted out and step forward. 

I also had a visit from a local Hertfordshire Community Cardiac Nurse, this got triggered from a request from Papworth's physio for Cardiac Rehabilitation. She spent a lot of time with me and gave me some helpful tips and it is nice to know I can contact her if I need anything and that there is some support locally. I'm waiting now for an assessment for cardiac rehabilitation or pulmonary rehabilitation, the physio will assess and decide which is better. Somehow I'm feeling a bit of an odd case, because I probably fit both in some ways with my brand new heart and my brand new lungs! 

So a very productive few days since my last blog! At this week's clinic, I will know what's what, I won't feel such a newbie anymore, I should feel a little better and improved even and better still, I should be done by lunch if there are no problems, so far there is no bronchoscopy planned, so all should be less tiring. 

Onwards and upwards still! 

A Heart Beating so Powerful and Strong

Since I had my heart and lung transplant, a whole month ago now, lots of people keep asking me, 'What does it feel like?' 'Do I feel any different?' While I waited all that time for my transplant I constantly pondered if it would feel any different with a new heart and lungs compared to those I've been used to or if I would just feel the same, but with new organs I would hopefully feel well.

When I first woke up in intensive care I was very, very weak, still battling a few problems and I was aware I was very poorly, but the one significant thing that sticks in my mind is laying there and feeling and listening to the strong, powerful beat of my new heart. A heart pumping so fiercely that my body felt almost lop-sided to the left. A feeling that I had never felt in my whole life before. I knew there and then that although my old heart had worked hard for me for many years, it had never felt like this. This felt different, this made me think and gave me hope that I really will be able to do things again and even do them better than before my illness. This sensation stayed for quite a few days, I knew I had something strong inside me, which was going to take me to a whole new world. 

When I became a lot stronger and came out of intensive care, the intense feeling subsided to be replaced with a feeling of confidence, because I felt a strong heartbeat and my new lungs were giving me high oxygen levels. My sats are always at 98 or 99 - how wonderful is that? Amazing is all I can think, there is a wonderful flow of oxygen in my blood and my strong heart means it is getting to every bit of my body. 

When I was unconscious in intensive care, the first thing my family noticed that had strikingly improved, was my skin tone. I used to have a very grey pallor and then after I was given the Epopostrenol drug it made me flush bright red constantly all day long, if I wasn't flushed bright red, I was covered in bright red blotches. Suddenly over a day, my skin was clear and more peachy looking, my lips had turned to bright pink, yes lovely pink, after being blue for years. Even unconscious I was looking healthier. This gave my family hope at a worrying time, as they could see improvement. The medical staff were even commenting on it. 

I was unaware of all this and although everyone kept telling me, it wasn't until I left intensive care and went on to Mallard Ward that I saw myself in a mirror for the first time. I haven't been able to stop staring since, it is a shock every time I see myself and I'm taken aback. My eyes are suddenly clear and bright too, they were often blotchy and bloodshot with my medication and illness. The new drugs have also given me a bit of weight on my face and the gaunt look has vanished. All of a sudden I've got a whole new look, something unexpected from all of this, something that had never entered my head while I waited for my transplant. All I ever wanted was just to walk properly and then in turn I might look healthy if I could exercise, the healthy look came straight away with my new heart and lungs. So here I am with a whole new look I hadn't bargained for, I think I can honestly put my hand on my (new) heart and say my transplant has been a blessing just to be given that surprise gift. 

While I was on my Epopostrenol drug, something happened to trigger severe eczema on my arms and legs, then with all the flushing redness the drug gave me it was exacerbated and was spiralling out of control, whatever medication I tried. It would bring me to tears at night when the flushing was at its worst. With all the fatigue and problems of PH, coupled with this, I was unable to go out in the evening anymore. When I regained concsiousness, my eczema had disappeared completely. I'm using soap again now and gentle moisturisers and a few nights ago I went out to the pub for dinner, the pub was all lit up with candles, a sight I haven't seen for a while! 

Epopostrenol always gives a nasty side effect of jaw pain, for me, as they increased the drug from time to time the pain increased in intensity. Then it also caused me severe tummy problems, I was becoming more intolerant of various foods and using anti sickness and diarrhoea drugs to try and counteract and control the problems. This does not happen to a lot of people who use this drug, but unfortunately for me it did and it is one of the reasons that transplant was an attractive option, dealing with all the side effects of my main drug and the symptoms of my illness was really impinging on my quality of life. We did not really know how much more of this drug I would be able to tolerate and I was always full of angst when I could see the need for an increase coming. I don't think I was far off needing yet another increase as the fainting symptoms were rearing again and I had been back in hospital the week before my transplant.

The jaw pain went straight away after my transplant and then after the withdrawal period from the drug, which was stopped during my transplant, my stomach has settled down and so far I am coping with my new drugs well. Although I have to have a serious amount of medication now post transplant there is nothing so complicated as making up that intravenous drug Epopostrenol and all the equipment that needs to be managed that goes with it. All is gone now, I don't have to carry a pump around on my shoulder or disguised as best as I can under my clothes anymore and I don't have to walk round with the risk of getting a life threatening infection via the Hickman line that delivered the drug all day and night straight into my heart, lungs and bloodstream. Of course I was more than happy to have this drug too, whatever it threw at me, it kept my illness at bay, it stopped me passing out every five minutes, it gave me some life back and I was able to make the most of life while I waited for my transplant, it actually saved my life, but all those burdens it brought were gone in a flash or soon after transplant. 

So now here I am, some very stark differences in my health, so soon after my transplant, some unexpected ones, some I had hoped for. I am now in a world where things should go forward and get better and better, my strength is getting better each day, every moment is a precious moment I can't take for granted. My exercise tolerance is getting better, I'm using an exercise bike, something I wouldn't dare to think of before, I don't think it will be long before I will be able to walk further than I could during my illness; I'm wearing everything I fancy without the worry of how a pump and Hickman Line may look and I've rediscovered my belts that I can now wear out over my clothes. I am just savouring all these new gifts my transplant has brought me, even at this early stage, much more than I could have ever dreamt. I feel a bit like a butterfly trying to emerge out of a chrysalis, I'm climbing out slowly, but very surely! 

I don't know how I can even begin to thank my donor and their family for all they have given me and all the changes in my health that have happened in such a short space of time and on top of this there is all the hope they have given me for a better future. They are never far from my thoughts. 

It is an overwhelming gift.

I would like to dedicate this blog, which to me is full of new hope and gifts to some very special people:

Firstly to my lovely friend Anne, who is also always in my thoughts and lost her battle with PH and transplant last summer. She has been in my thoughts throughout my transplant journey so far. How could she not be? I have just been in all the same places I was with her last. Anne always had a beautiful and brave smile, whatever came her way and whatever she faced. Every time I've found it hard during this last few weeks, I have thought of her and tried to follow her example and bravery. I have tried to put a smile back on my face and know I have been more than lucky to have been given the new chances and precious moments I have. Anne will always encourage me on. 

And to Toby and his family. Toby sadly lost his life tragically just before he was seventeen and had told his family that if anything should happen to him, he would like to donate his organs to help others. Toby, Graham, Sally and Stephen you have given a new lease of life to others, who have been in similar, if not worse situations than me. I hope you can see how precious the gifts are that you have given and what a difference those special gifts will have made, even so soon after transplant; transplant changes lives dramatically, you should be so proud.