Saturday, 30 November 2013
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!
Saturday, 23 November 2013
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.
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!
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 ...
Monday, 18 November 2013
Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you!
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.
Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you!
Wednesday, 6 November 2013
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!
Friday, 1 November 2013
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.
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.
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.
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.