Thursday, 30 January 2014

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!

Sunday, 26 January 2014

January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better! 

Wednesday, 22 January 2014

A Perfect January Day

Monday 20th January, it is supposed to be the most depressing Monday of the year when the weather is cold and severe, credit card bills from Christmas over spending need paying and it still seems such a long grind until the warmer months and longer days.

This morning though, I am feeling really uplifted, I am in yet another new place, a place I've been keen to visit for some time now, a place I keep seeing sign posted from the M3 every time we take Rose to and from university. I've promised myself I will keep finding new places to explore, to enjoy and learn about and that I will get out and see all there is to see of life, nature and history in all its shapes and forms. 

There is birdsong in the air - there are two robins calling to each other perched high up in the trees - melodious warbling, wistful winter sound, powerful and passionate for the promise of spring. The new year sun is casting bright light across the green, everything looks illuminated in this unusual winter weather. It feels like springtime already, yet it is only January. It is a sharp contrast to the constant cold and snow of last January and a sharp contrast to the constant wind, rain and gales of the last few months. 

There are signs all around us of the recent weather, the river is full to bursting, flowing fast and furiously, spilling itself over the footpath still. The water level is receding just a touch today, because we have no rain. The footpath has just reopened after being flooded, but the river is still taunting us, reminding us it is still there, menacing still in its speed, ripples ricocheting across the river walls and creating itself more currents, adding to its gush and haste. You can feel its rapid velocity, yet the water flowing on this chalk bed is still crystal clear and clean. There are supposed to be kingfishers nesting along here, but I wonder how they could even begin to fish for their food with the river's speed. The air smells fresh and crisp, there is a revitalising sensation to it. I want to take deep breaths and breathe it all into my new lungs and feel renewed yet again. 

Across the bridge and higher up the river we come upon the City Mills, now owned by the National Trust. The mill was rebuilt on a medieval mill site in 1743 and the Trust has restored it back to a working mill, with an operating water wheel, enabling flour production again. The building is stunning and so old and huge inside, it feels colder inside than out, there is a distinct chill in the air inside and I'm glad I wrapped up warm. The water wheel turns alongside the gushing mill race, which cascades underneath the mill and spills out downstream in a torrent. Again, there are more indications of the wet and stormy weather, part of the viewing area is cordened off due to flooding and the imminent risk of more floods to come. We have a bit of light hearted fun with some American tourists, taking their pictures for them against the back drop of the water wheel and the spilling water.

Out in the mill's gardens the river splits to either side and you feel like you are on a little island, thrust between the coursing, spouting river. The sun glistens through the willow trees, swathing their branches and sparsley remaining leaves. They look as though they are bowing over towards the water, swaying and shimmering shades of ochre yellows in the sunlight. 

Next we wander up through the busy, vibrant, main high street, there is a wealth and mismatch of interesting architecure. Modern shopping - juxtaposed amongst ancient and interesting looking buildings, some dating back centuries. There is a cosmopolitan and lively ambience with buskers adding to the sense of vitality and joviality. There are many usual high street shops, old shops, quirky shops, independent shops. Add to that the bakers shops, the tea shops, restaurants and coffee shops, with their pavement cafes and varied aromas. It is only January and people are sitting outside enjoying the early sunshine and soaking up the atmosphere.

We wander on and come upon the cathedral in all its grandeur, towering majestically amongst its grounds and walls, but somehow managing to hide quietly behind the high street, tucked away from the river by other surrounding historic buildings. It looks as though it is just waiting secretly to be discovered and wanting to be explored. We go for an explore inside and it is magnificent with its huge stained glass window above the entrance, the bright sun of the day, streaming through and lighting it up both ethereally and naturally. There are bright yellow pageants adorning the main aisle, adding to the sense of light, warmth and welcome. The cathedral dates back to 1079 and is enriched with many features of architecture from the 11th to 16th centuries. I discover that Jane Austen, one of my favourite authors is buried here too.

Our little wander continues back to the river, passing many more buildings of significance and interest: Cheyney Court, a mid fifteenth century building; Jane Austen's House; Wolvesey Castle and Palace, dating back to 1110 and the College, with origins from 1387. All these beautiful buildings are against a backdrop of blue sky and light and seem to stand out at their best in the day's sunshine. 

I spot some beautiful snowdrops by the river bank, they are the first I have seen this year, a welcome sight and it brings thoughts of spring back into my mind again: especially as we are back by the River Itchen again, back to where we started and back to the singing robins, still chorusing away while it's daylight.

Winter time in Winchester. What a worthwhile wander around and special day out in the warm, January sunshine. We have not been disappointed, it was well worth the wait! 

We have walked a circuit of at least three miles, stopping for coffee and lunch and now it's time for another rest before home, we visit another cafe for tea. I've enjoyed today wandering about aimlessly, just mooching like any other person. I like it here. When I first started getting out and about after my transplant, I felt like I wanted to shout out to everyone, 'I've just had a heart and double lung transplant!' In those early days it all felt so strange and surreal. Today, I've got more used to things; more settled. I like it here, that no-one knows anything about my transplant; I like it that I've been able to walk around; I like it that I've walked so far and much further than I ever could for many years; I like it to feel ordinary again; ordinary is where I want to be, nothing else, just back to me again! 

Tuesday, 14 January 2014

Freedom and Footloose and Fancy Free!

I am leaning on the railings of the bridge, looking out over the vast expanse of river down towards the city scape on the horizon. The ripples of the river are sparkiling in the late afternoon sunshine and there are echoes all around me of crowds and people - busy, enjoyment, hustle and bustle, Saturday afternoon revelling. Traffic is flowing behind me, the quiet still of the cyclists and the hum of cars and taxis paled by the loud drumming of the buses, the whirring of sirens and the roar of motorbikes. In front of me there is more traffic - the river craft - river buses, barges, tugs, pleasure craft - some stationary, some moving, some speeding in exhilaration and fun. It is a feast for my eyes and I feel life is all around me: circling me, engulfing me in, daring me to join in properly once again...

It's just over three months post transplant and it's time to come out of my comfort zone of the last few months.

For a short while now I have achieved a good level of health again, in many ways similar to the level I was pre transplant, obviously though without the same problems, many of those are long gone now. There have been some new problems though, especially the need to build up my strength and fitness after the operation left me feeling so weak and tired and I've still been working around medication and the various issues that come with that, albeit different medication. 

I feel comfortable with this, it's safe, it's familiar to what I've got used to over the last several years. I'm delighted I've got back to this level though after what we have been through and knowing how transplant can be so difficult. I'm delighted I have got this far - it's good to be pottering about again, getting out and about and taking short walks. It isn't, however, what I had my transplant for - to lead just a similar life to before, to just be happy with my lot as it is now - so after giving myself a few months for recovery I know it's time to take more demanding steps and try and push and challenge myself that bit harder. I need to break the mould of the last several years and go beyond it - living life to its fullest again in yet another new way. 

After a positive hospital visit last week, I was given a brand new lease of life, medication that had 'hindered' me in various ways - water tablets and nebulisers- were stopped and this in its turn led me open to a new lease of life. So feeling much better and stronger, Thursday was a brand new day and started without these drugs and overnight my medication regime and way of life changed - only tablets now, but none that make restrictions on me, except they need to be taken on time - tablets that can be popped in my handbag and taken on the go - just like a takeway latte or cappucino! Suddenly I'd been handed my freedom back after years of being shackled to intravenous drugs, nebulisers and diuretics. This may seem a simple thing to many, but for me it knows no bounds and for now I am free, free, free - footloose and fancy free again!

I found this a great spring board to make some more big steps - I've known I should be trying a bit more, pushing myself to walk a bit further, daring myself and allowing myself to get breathless a little. I have been so scared to do anything that makes me breathless for years now - breathlessness always whispered fainting for me, fainting always said heart failure, heart failure shouted out more debilitating drugs and it was a neverending vicious circle of must not do ... I can't get breathless. 

On Thursday we went out shopping, I could only normally manage one shop or a couple of shops if they were close by, but this day I walked at pace around the whole shopping centre for over an hour, then we visited John Lewis, a short stroll away and spent another hour or so there, then I walked to a restaurant for dinner and finally returned to the car having walked up three flights of steps without a stop or a look back. I took the plunge, went for it and succeeded, now I know I have surpassed the limits I had pre transplant and that I am so much stronger and fitter than I have been for years. I have always felt from the very beginning that  my transplant has been life changing, now I know it is much more than that, I have my life back once more, good and proper, I don't feel ill and exhausted like I did, I have much more energy and zest. 

On Friday, we were interviewed for a magazine article in Hertfordshire Life, they approached us following our article in the local paper. We were more than happy and delighted to try and spread the word once more about organ donation, especially as I am beginning even more, as the weeks go on, to understand just exactly what a life changing event transplant has been for me.

On Saturday we ventured into London for the first time in years without a wheelchair, nebuliser or intravenous drugs. I walked it to the station, at a good pace and ventured up the steps without hesitation - I can do those now! Once at Kings Cross, I was marching along the platform like a real commuter, amongst the bustle, an unafraid, confident new me. We spent the afternoon strolling around Westminster and soaking up the atmosphere, feeling strong on my legs and different than before and I still had the energy left to meet up with friends later and enjoy their company for the evening. In times past, just getting into London using a wheelchair would have been enough for me and I would have been exhausted.

We stayed over in London, because on Sunday we were going to my friend's party for the afternoon,  I'd planned a lazy morning so I wouldn't overdo it. The sun was shining though, the sights and atmosphere were beckoning and my camera was looking at me saying, 'please take me out there!' So feeling full of energy again, off we went for an unplanned long stroll down Southbank with the cameras.

We had a fabulous afternoon at the party, catching up with friends. The taxi driver had dropped us off at the wrong end of the street to get to the party too, so I'd had quite another long walk to get there, but I still had loads of energy! Where is it all coming from? I found myself feeling much more sociable than ever - not that I've ever been unsociable during my illness - but there was only so much I could manage before I would begin to wane and I could only concentrate on conversation for short time before I would feel tired and exhausted. This day was different and it began to sink in for both Rob and I what a huge change had happened with my transplant and how I am now able to do things again that I haven't done for years. I realised I have begun to join back in life with a new energy. 

We had dinner later on and went for yet another walk afterwards, it was raining and lights were twinkling around us everywhere and reflecting on the wet pavements and the river. It all looked and felt very magical and in that moment that was our reality right then, transplant had woven its magic. Our lives feel magical once more, I can do things once more that I could only dream about three months ago. I am finding I can do more and more and even more. I dare to hope how far I can go now.

It is an unremarkable Monday morning for many, but for us the sun is shining brightly in more ways than one, the sky is blue without a trace of cloud, it seems to look bluer than ever before: not what was forecast, but who ever really knows the future weather and all? We have stopped half way across Westminster Bridge to lean over and admire the view once more. We are going for another walk, this time even more ambitious and further and we are on our way up to St James' Park. The bridge is teeming with life, it is all around us and this time right within. This time it's a working day, we stand transfixed at the view, amongst all the foreign tourists strolling past us; business people hurriedly striding and strutting to the next meeting;  politicians treading up to Parliament; stall holders shouting;  busy traffic, both river and road, whirring in parallel to the human hustle and bustle. Rob turns to me and says, 'I have got you back.'

Friday, 10 January 2014

Clinics, Bronchoscopies, Biopsies and All!

An early start, then the heavens opened!

It's just been the first full week of January and all the festivities are all over and behind us once more. This week is a bit of a wake up call after all the enjoyment of the last few weeks, where I've put aside all those niggling health worries and had no hospital visits to think about. Suddenly my next clinic visit was imminent, together with a stay in hospital for yet another bronchoscopie - I think this will be my eighth or ninth, I'm losing count now - and a lung biopsy to check if there are any signs of rejection in my new organs.

Suddenly as we get nearer to clinic day it all starts to feel very frightening and overwhelming. I think the fear is heightened as it's been Christmas time and we have had such a lovely time and been busy doing special things and seeing family and friends and I've managed to put aside a lot of my worries about my transplant.  It's not that I'm pessimistic or anything, I try hard to be optimistic, but I'm also down to earth and practical and like to be mentally prepared for any eventuality. The morning is dark and the weather reflects my despondent mood, blowing a gale and absolute torrential rain - roads are covered in flood water as we navigate along them. 

As clinic day drew nearer, I had started to get lots of pain underneath my lower ribs, which seemed to shoot upwards at times and downwards at others. It felt like my drain wounds underneath my chest were sore again, but not quite the same. I kept thinking is it my new lungs or is it underneath them? The pain got worse the day before clinic and I felt relieved I would be having a thorough check, but scared to death about what the pain might be. 

I've been walking over a mile during the Xmas period!
Rejection is a very frightening word in my world of transplant. I have to measure my weight, my lung function and my temperature every day to check for any changes, as this can be a sign of rejection - all seemed fine though on that front and I have to trust what I have been told. It is instilled in you to watch out for any signs of things being or feeling different in case of rejection, so it can be caught early and treated and slowed down or stopped. How on earth do you know what it feels like though or if you feel anything at all when it starts happening? 

You can't help wondering and worrying at every small ache and pain sometimes; you want to phone the Transplant Nurse and check, but if you do, you feel you would be phoning up every day with something or even three or four times on some days! So you have to strike a balance, but bottom line is: if you are really worried, you phone! Knowing I was going to clinic the following day and actually had a biopsy and bronchoscopy planned too, I decided to wait rather than phone up. If I hadn't had clinic and tests planned, I definitely would have been phoning up, as the pains were getting worse. 

So why are we transplantees so scared about rejection and our aches and pains? Well obviously rejection of a main organ can be fatal and in my own case I've got three organs that may reject to fret about.  There are a few types of rejection: acute, chronic and antibody mediated rejection. 

Knebworth recreation ground where you will often find me practising my walking!

Acute rejection is when the body starts to reject the new organs very quickly - it is very common in the first year of transplant and there is always an ongoing risk - but picked up early it can be treated. It is therefore imperative that you watch out for the signs and it is treated soon enough. The trouble is in those first few months of recovery, you experience all sorts of ongoing aches and pains due to the whole process of the operation and healing, let alone the fact that you have transplanted organs inside you that are settling in. These aches and pains seem to change by the day and you end up not knowing what is normal or not normal. How would you know? 

Chronic rejection happens over a period of several months to many years. As lungs are very delicate organs, this can start as early as six months after the operation. In lungs it is called 'obliterative bronchiolitus' and is where the lungs get blocked by scar tissue and then do not function as well and then the lungs begin to deteriorate over time. Infection is linked to this one: recurrent infection can cause permanent damage to transplanted lungs, that is why it is so important to try and avoid infections. It can make the difference of a long prognosis after transplant or a short prognosis. So if I am a little paronoid about infection and my new lungs, it's purely because I want to live for a very, very long time to come! 

There is also antibody mediated rejection, where your body produces antibodies to your transplanted organs. Antibodies are proteins made by your body to fight infection and foreign substances. That is why we transplantees are heavily immune suppressed, if this type of rejection occurs then there is a process called 'Immunoadsorption' where anitibodies are removed from the blood that may help.

So on Tuesday, after a bad night's sleep, off we went to clinic and in contrast to all the festive fun, I'd come back to earth with a big bump and still felt worried about the pains I was having; worried whether they would find some rejection; worried about infection; worried once again about the couple of problems I have in my trachea with the scarring and healing, which they were going to check on again and if they might say I need surgery. Basically I wanted to go into denial that I'd ever had a transplant and just stay in my Christmas cocoon and not have to go to hospital to be prodded and poked ever again! But reality has to be, I just don't want reminding of it sometimes! 

Once I got to clinic, all felt a lot better. I think on the way there it felt a bit like that first day back at work after Christmas, when you have to get back to real life, but multiply that by about a thousand to be nearer the mark, because of the unusual situation we are in and the anxiety of what may be found once there. Back in clinic, you are amongst a whole roomful of other families, who are also in this same bizarre situation and then it all becomes normal again. There are others, who have dressings on their necks, scars peeping from the top of their chests, plasters on their arms, canulas popping out from their sleeves and I'm back in the place where everyone totally understands. There are familiar and friendly faces amongst both the patients and staff and a feeling of calm, routine and order, we are back in what I call my parrallel world and it suddenly feels as though I'm back on safe ground and back in familiar territory again.

The clinic is a long, tiring morning with blood tests, x rays, ecg, lung function tests, a chat with the nurse, a chat with the consultant about the test results. The tests looked good so far, no nasty shadows showing on the x rays. The awful pain turns out to be good news - it is the nerves that have been damaged during the surgery growing back and working again - I am so relieved I can't believe it. I'm told it will all settle down in time  - thank goodness! 

Next up it's canula time, my least favourite bit, always a struggle, but this time it only takes three attempts and two nice bruises! Then it's up to Baron ward and I find out I'm sharing a room with my lovely friend Bernice! She has hatched a little plan with the nurses! We get a chance to catch up before bronchoscopie and biopsy time. It is so good to see her.

Bronchoscopies are becoming a normal procedure for me, but I still feel a bit nervous about them. It's the same welcoming team and Dr Parmar, my consultant is going to undertake it. We chat about Christmas and he stands with his hands behind his back while he chats. I know what's coming - he's hiding that awful stuff behind his back that he squirts down your throat and then it makes it numb! Next I'm waking up and it's all done with. The results are good, the areas of my windpipe that they were checking are looking better than before and looking like they are healing well. They still want to keep a close eye on things, so they will do another check in a few weeks time.

Later the following day I get the good news that there is no rejection and the better news still that they are going to start reducing my medication. The best part of the reduction in medication is that it is all the inconvenient stuff that impacts on your quality of life that is going. The Amphotericin that is taken by nebuliser three times a day, which can tie your day up and the water tablet, Furesomide, which is just a big inconvenience every single day and has been for years. Hooray to the end of that! My steroid, Predisolone was also reduced. 

I was discharged one very happy patient after all that worrying and with a new and uplifted feeling that a new chapter starts in my life tommorrow with the reduction in my medication - nebuliser and water tablet free at last! It is sun shining as we drive home, opposite to when we drove there, the weather reflecting once again my mood, this time I'm elated and happy! Thursday and I'm up to my old tricks again - I just cannot stop smiling and pinching myself and know just how lucky I am, yet again. I think of my donor and their family and what they have made possible for me!