What a Difference a Day Makes

Sailing through October and I've been steadily embarking on the first few weeks of my fourth year post transplant. I'd been feeling fighting fit - well very fit. I'd just arrived back from a holiday in Whitstable, where we've walked miles every day in the fresh sea air and autumn sunshine. It'd been a whirl of wonderful times - I was cycling around a park in the middle of the Danube River in Budapest only the week before, laughing, happy and carefree.

What happened? I'm in shock more than anything. I try and trace things back a little. Why did I not spot the signs? Should I have worried when I didn't? 

One of the things about being a transplant patient is that you have to monitor yourself and note down daily observations. It can become a little tiresome over time doing this everyday as the years go by. I know some people give up on it, knowing they know their bodies well enough if something is amiss. I feel a little like doing this at times, so admittedly I don't managed to keep up every day, but I do ensure I take a run of recordings every week. I take just enough to check in each week, reassure myself of what is my normal - it's that standard to look back on if things don't feel right. It gives me evidence for the doctors. I can sit and tell a GP, 'But my temperature's elevated at 37 - it's been 36.4 for three years 

every day until now!' I make the effort to try and do it, as it makes sense that you may spot something untoward happening. My observations had all been fine - an odd statistic now and again - maybe a random temperature of 37, but no steady pattern; maybe an odd low lung function test, but I'm not the greatest with lung function technique. There were no observations throwing up alarming signals. 

I always have a cough. I have had the cough since my transplant. It stems from a join that healed in a funny way after my operation, it causes me to have to clear my lungs each day. I might have said a few times on our walks recently that I feel like I'm coughing a little more. But the air has gone suddenly colder, there'd been a cold wind blowing and I put it down to that, especially when I'd been walking along a chilly seafront early in the morning during normal prime coughing time. I can't really put a finger on it that it was getting worse, perhaps just marginally worse as I've felt the need to mention it. And then I recall mentioning an odd moment of breathlessness once of twice - clambering up a steep slope from the sea front to the flat terraces above with the wind in my face. Rob says, 'I'm breathless too, if you hadn't stopped for a minute, then I would have.' Similar thing again, this time being pulled up a hill by Ted at Wimpole Hall two days before my clinic appointment. I'd stopped and caught my breath, there had been a cold wind and I was a bit tired after already walking a good few miles. Nothing to worry, I put it out of my mind as soon as it's flashed into it. 

After Wimpole I'd woken in the night. I've kept having a tingle in my neck that shoots up my face to my ear. This night it's aching and feels stronger than normal, like my glands are swollen up or something. It's been doing this on and off from summer, but this feels more. Much worse. 'Should I phone for an appointment with the GP?' 'Will they just stand and stare at me?' 'What's is she on about - a tingle in her face?' 'Should I phone clinic?' 'But I'm there in another day,' I think. I decided to wait and see, if it becomes worse I'd phone the GP in the morning. It disappears and goes. Worry sorted. I might mention it at clinic, but then I don't want to seem like I'm a paronoid, self-obsessed transplant patient, so I might not. 

I jump in the car to go to clinic. I feel strong and well. Healthy. I say to Rob, 'I don't think I'll mention any of these silly little things. What will they say? Well they'll probably laugh at the tingling face bit; they'll probably say of course you might be a bit breathless climbing up steep hills with a dog pulling you on the lead with a cold wind on your face!' 

I've already mentioned to them about feeling fatigued and having to pace myself more, we've already discussed this at clinics and put it down to all the problems and ups and down that have gone on during the year following the serious attack of CMV virus at Christmas and all the medication tweaks that have come with it over the year. That's been an ongoing and continuous issue to keep the CMV virus at bay and having to pace myself and becoming fatigued was part of the course.

I felt breathless walking up the incline leading to clinic with a friend. Arriving in clinic I needed to sit down straight away. I'd no breath left. I sit there and think, 'Did that really happen? Did I actually lose my breath? Did I have no control on my breathing?' I recovered myself, sat and chatted with friends, had my tests done, felt fine. I think to myself, 'I'll just mention all things niggling things after all. I don't like what happened earlier.'

I see the consultant and we chat about how I am - I'm a bit reserved at first about the mismatch of what feels like 'nothings' going on. He turns and points to my lung X- ray. They are there, as always, my new lungs staring down from the computer screen and he tells me he's noticed some marked differences since my last X-ray. Things he's concerned about. I rattle off all those little nuances and nothings. I listen in surprise as I'm told I'm being admitted into hospital immediately and tests will be done straight away. It's all a shock - the swiftness of how this is all moving. 

Five days and numerous tests later, I return home a completely different person. I'd climbed in the car on Thursday morning thinking of myself as fighting fit and perhaps needing a little reassurance like all us transplant patients do when we visit clinic. I returned back home with the dreaded diagnosis of that 'R' word hanging over me. Rejection in my beautiful borrowed lungs. The 'R' word. And not only that, but there's another problem diagnosed in both lungs too, which needs specific treatment. Basically I'm not what I thought. 

So here I am home and we're catching our breath as a family. It's a wait and see the response to new medications. It's a wait and see the response to generously increased medications. It's a wait and see response to high doses of steroids. While I wait, I go back to those old tricks of recovery - things I do each day really anyway, but during times like this they come with a new intensity. They're tried and tested and with a fair wind can help work alongside the medications. Rest. Recuperation. Good diet. Excercise - well at least moving around within my limits as they are at the moment. Keeping the mind busy. Focus and resolve to fight, survive and overcome.  

Most of all, it's small positive steps, just one at a time each day to face whatever is happening on that particular day, be it for better or worse. It's better to tackle those than worry about the 'what ifs' that may never happen anyway. Just little steps. Little daily tasks. Small and positive accomplishments as we wait and see what unfolds next. 

The big positive at the moment is there is still hope - much of it - that things may be better again, even though I've been advised it's all going to take time whichever way things swing - they still might be better again if I am lucky.

What a difference a day makes. Fortunately for me it was a day when I just happened to be in the right place at the right time and fortunately the problems as they are forseen are being treated for now. I'm thankful for that, hopeful for this coming year still and always grateful for the extra wonderful years and time that I've been blessed with already. 

Home Again, Home Again!

Getting back to hospital on Sunday evening didn't feel so bad. I was still in the same room, I hadn't been sure whether I would be or not, so it all felt very normal and secure and I knew what was what. I had a gruelling few days ahead that if I'm really honest I wasn't looking forward to.

Monday started quite easily and I was shown how to take my own lung function tests. When the man came to show me how to use the little hand held device, which records it for you, we recognised each other. I had met him regularly as he had done lots of my lung function tests when I was under the PH team, so it was good to have someone I know show me. Using the little device is easy, you just take a deep breath and blow into it, you have to do it 3 times and then record the best reading in the famous little blue medication book. The lung function test has to be done every day, along with taking your temperature and weighing yourself. All these things can give indicators that you may have infection or rejection and you may feel alright and not know. If you suddenly gain a few kilogrammes, then you have to phone the transplant team; if your temperature is suddenly higher, then you have to phone the transplant team; if your lung function suddenly drops more than ten per cent, then you have to phone the transplant team. They drum it in to you, you do not sit and wait to see if things improve, you phone them straight away. This will be a bit of a learning curve for me as I'm a bit of a wait and see how I'm doing person, but I know I will not have to hesitate or it could be life threatening. I guess you learn to live with this. 

Lung Function Monitor

Tuesday came and for me this felt a big day. I had been getting myself quite worked up about it since Sunday, it was time for another bronchoscopy and a biopsy of my new lungs. The biopsy would show if there was any acute rejection. Just being newly transplanted that word 'rejection' fills me with complete horror, I think it will always scare me, but I hope over time I will be able to make an easy peace with it and live with it. They explained to me that it is quite normal to find some rejection at this point and that if this happens they will treat me with intravenous steroids for a few days then all should usually be fine. This reassures me, I have every faith that the transplant team will be able sort out whatever happens to crop up, I have to have. It is all done and dusted and I'm a bit sleepy. The plan was to go back to theatre an hour later to have my Hickman Line removed, but it was postponed at the last minute until the following day and I was glad, one procedure like that is enough for one day. It was PH clinic day and I had a lovely visit from Denise and her husband, which cheered me up. Ruth's husband popped up with a card and pressie too and I was disappointed I had put her off visiting as I had expected to be back in theatre, so I missed meeting Ruth unfortunately. I can feel a trip to Norfolk coming on when I feel better! 

The Famous Transplant Bible

The results of the bronchoscopy and biopsy would be through later in the day on Wednesday, and I was told if everything was fine, I would probably be able to go home. So I both dared to hope and dared not to! 

Wednesday came and I was taken back to the operating theatre to have my Hickman Line removed. This felt very unreal, the last time I was wheeled in there, it was for my transplant, I felt unnerved and also scared as I didn't know if this was going to be painful or not. Tuesday had felt difficult as they had had to make many attempts at putting a cannula in before my biopsy, which had been painful, three different people tried several times, my veins were just saying enough is enough! Wednesday they needed blood tests, same again, several attempts. I never used to have a problem with this, but it was all getting painful and my arms and hands were black and blue, so I didn't really feel like facing much more at this point. Probably very pathetic I know compared to what others have to go through and that's what I kept telling myself. Removal of the line wasn't too bad, it just hurt when they injected the local anaesthetic, there isn't much fat for injections on your chest and neck! Then they calmly talked me through as they did each bit. It was soon over, I had to have stitches, so I've acquired yet another war wound! 

The most significant thing for me was that the removal of the Hickman Line finalised the removal of Pulmonary Hypertension. It is all gone now, there is none left and nothing of it anymore and I am more than daring to hope for the future, hoping to go for a walk, hoping to walk round the shops, hoping to feel better again. When all these chest wounds have healed I'm going to stand under a shower and sing! One of the nurses found me in tears, I just said I'd had enough. How could anyone, unless you have had to have this medication and illness, and there are only a few of us, ever begin to understand what the moment feels like when it is gone?

The nurses worked hard all day on Wednesday to make sure everything was ready for me if I was able to go home. The Transplant Doctor came to visit me around 5 o'clock with a massive, beaming smile and told me excitedly that I had no signs of rejection and therefore I would be able to go home, which was brilliant news. Unfortunately, as well, they have found a problem with one of the 'joins' they have made to my new heart and lungs and they want to keep a close check, so I will have to have another bronchoscopy in a week's time, which they would not normally do at this point. I've also got a persistent, awful cough, which could be connected, but again, in these early stages it is hard to tell. I am going to be admitted to the day ward, so they can do all the checks they need. I am not going to worry about this, they will have had to deal with this type of problem many times before I'm sure. I'm just going to get myself home, get myself fitter and build myself up more, ready for when I go back. 

So Wednesday evening and it's home again, what a lovely feeling, this time home properly ready to start a whole new journey and new life after Pulmonary Hypertension. 

Welcome home!