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!

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!