Five Months On!

The church at Tewin

Today it is five months since I got my life changing phone call. Time is moving on and life is moving on. I am well and truly back on my feet and feeling much better than I did pre transplant now, following those initial months of recovery. Achieving this and getting to this stage was what having the transplant operation has been all about. The whole aim was to get a better quality of life than I was having beforehand and for me it feels fantastic that I have now reached this point. 

Tewinbury Farm

It has been an amazing journey so far and there has been a lot of stages to get through in a short space of time: from those traumatic days in ITU; the beginnings of recovery on the surgical ward; those first uneasy days at home; the following constant clinic visits and the many brochoscopy procedures, to where I am now - having a five week break from clinic with no future bronchoscopy in sight!

Interspersed in all of this have been moments of great triumph and moments of despair, but the important thing for me is that my family and I have ridden all those early stages now and we have determinedly tried to keep moving forward step by step whatever the setbacks. We always knew it wouldn't be easy and we accepted this from the outset, enabling us to take the difficult parts with the good.

The Herts Wildlife Trust Reserve at Tewin

From the beginning I knew that I had to build my strength back up after being so ill and going through a major operation and all the traumas that followed in those early weeks. I remember feeling so weak at first and felt frightened if I had a setback, such as getting an infection or rejection, I might not be strong enough to fight anymore, having already fought such a hard fight. I set my mind to it when I first came home that I really needed to eat well and get exercising so I could fight the next round when and if it came. I think doing this has carried me through and I've now managed to get myself fitter and stronger to where I am now. I'm still very focussed on keeping this up, the thought of a setback happening still motivates me all the time.

 The freedom of a walk and fresh air!

From hardly being able to eat much in those early days, I'm now able to eat normally and have got my healthy appetite back. It was difficult to eat solid food in the early days after the operation and then came the medication overload and the constant coughing, which upset my stomach often; the constant bronchoscopies upset my stomach really badly and even gave me quite serious allergic reactions at times. 

I had to be wary with the food I could manage to eat and it was trial and error what my stomach could cope with or not at times. As a transplant patient there is also a long list of foods you aren't supposed to have because of your poor immune system too, limiting me even more. Eventually now my medication is reducing and the bronchoscopies are finished for the time being, I'm eating more normally and testing out more and more foods and managing them. So things feel much easier and more settled. 

Sherrardswood Park

I've got used to the medication routines now and that feels more settled too. The medications that were more limiting such as diuretics and nebulisers are gone now and life feels free from those restrictions. It's now just a case of tablets, lots of them still, but they can be put in your bag and taken out and about with you. In fact I could stop out all day and night now if I really wanted! That feels a great thing after the intravenous drugs of my Pulmonary Hypertension days and those earlier days of my transplant. 

So five months post transplant and things are still very positive and looking good. There are still more hurdles to come yet though, but that is all very normal in a transplant journey. 

I am currently at the stage where my medications need to be adjusted. They have recently taken me off an anti - fungal drug, Itraconzole, which has affected my Tacro levels, so my Prograf drug dose was doubled. That still didn't settle my Tacro level, so my Prograf dose has been increased again. I've had to visit my GP a few times now with all the medication adjustments and things, but that has been a good thing too as I feel he is getting to know about me and my transplant better.

With the increase in Prograf has come a nasty side effect of hair loss - I had been warned about this by the Transplant Nurses - I'm not quite sure how bad it is going to get yet, but hopefully it will settle once everything else does. I have quite fine hair, but luckily there is a lot of it, so it isn't showing yet and I'm hoping that's how it is going to stay.  

When my Tacro level does settle they are going to reduce my steroid, Predisolone, but for now that has to stay a high dose until it stabilises. These things just take time I suppose. 

A little bit of late sunlight peeping through!

They are also moving on to looking after my new heart now things are more settled. I've already been prescribed a statin now as a preventative measure as arteries in transplanted hearts fur up more easily and they are keeping a watchful eye on my blood pressure. Blood pressure can tend to get high with a transplanted heart, so there may be blood pressure tablets to come yet in the near future. 

A peek of blue!

I still have a chronic cough and now the problems with the healing join in my windpipe are sorted, they are planning some further investigations in the next few months. They are going to undertake a 24 hour PH test to investigate if there is acid from my stomach coming up to my esophagus and causing the cough. This reflux, if it is there, will also potentially cause permanent damage to my new lungs, so if it is present I've been told I will need to have an operation to tighten up my stomach to prevent it happening. 

I've also got problems with my small bowel and intestine because of all the severe reactions I have had to medications over the last few years and I have been referred to a specialist about this. Again, I may need more surgery to fix this. 

Someone needed a rest. It wasn't me this time!

I'm trying not to worry about any of these things though, in my mind they can just be crossed as I come to it and if surgery needs to be done, then it needs to be done and there isn't much I can do about it other than try and be as fit and strong as I can to deal with it. 

Sometimes it's a never-ending path!

So five months post transplant and there is a lot behind me now and still more things to face, but the most positive thing is how much better I am now than I was pre transplant. I have so much more energy and can do so much more physically now. It always feels amazing from simple things I couldn't do before like enjoying a proper shower to bigger things like being able to go for a proper walk now. 

Sometimes it's the simple things that feel special, one little thing I've noticed recently is how I can wear heels again. Before transplant my legs and feet ached so much all the time it was impossible to wear anything on my feet that wasn't flat or nearly flat, now I'm back wearing my shoes with heels! And belts, what's special about wearing a belt? Well when you have had a pump stuck on your waist for three years, it's just wonderful to get your waist back again and wear a proper belt. 

Which way? If we get lost at least I can walk now!

I think the best feeling of all, is that one of well being, the feeling that I've got some strength in me at last and renewed energy to do things. For now, I am staying focussed on this and enjoying all the positive things that have come from my transplant and the new quality of life it has given me. I'm just simply enjoying living life properly again!

Enjoying one of my many walks and taking lots of pictures!

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'

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!

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 ...