Drying up in conversation, you'll be the one who cannot talk

I've been reading a few other blogs recently that are written by other people who have already had their lung transplant to see what I can expect and I have to say that even though I can find lots of material out there from people in that situation they all have one thing in common, the cause.

They all suffer from Cystic Fibrosis and there seems to be a bit of a mutual help structure for those in a similar position to them. Now I know that all my symptoms are fairly similar to theirs and there's a lot more that we have in common than separates us but I feel strangely excluded from that particular group.

I've never really sought the company of strangers who have the same conditions as me before so it's a strange feeling for me to be thinking about it. I suppose I had enough of my family that were au fait with the subject that I could turn to if I ever wanted a chat about the Leukaemia so I never really had to look outside. In this chapter of events though there's no familial point of reference.

Being honest I haven't even managed to formulate what I would even want to ask someone who has either gone through the lung transplant process or is in the same position as I am in waiting for one so it's not really a pressing concern but it would be useful to know that when such things enter my head I have an option.

The medical things I can find out from doctors or from doing a bit of research - it's the everyday, almost trivial stuff I'm meaning. I'm sure all the CF folk would be happy to answer anything I ever have to ask - I don't know why I feel so weird about it.

Ready or not, here comes a thought

Broadband is still playing up but I have remembered that I actually have a internet dongle for such times so I'm now using it.

So where were we?

That's right it is early 2002 and I've really just started the photopheresis treatment to treat the GvHD which is attacking my organs, especially the skin. Like all apheresis procedures, where they take some of your blood out and spin it till they get the layer they want, it is a time consuming affair. Generally from start to finish it takes about four hours. It's also a very tiring affair. I always left the sessions exhausted, but I suppose that's only natural when for sections of the day a decent amount of your blood is actually outwith your body.

While there were lots of films and things in the apheresis unit to keep you occupied for the time you're hooked up to the machines, that's only really helpful if you can stay upright to watch them. Because I'm a slight wee thing having some of my blood out of my body sometimes led to me feeling a bit flakey so the only thing I got to see was the polystyrene tiles of the ceiling. The other thing that was almost always true of these sessions were that I would feel pretty cold. Most of the time I just slept through the whole affair though. On a few days where I was wide awake for it I took my laptop with me so I could try and write about the whole bone marrow transplant experience. It was much easier having access to my medical notes to see if my memory was in any way related to what the doctors had noted about the treatment. I got a fair bit of enjoyment out of doing that and those who have read it have told me they enjoyed it greatly. Having written about it at the time has made writing this blog a lot easier as well as I have lots to refer back to. It was never organised enough to put it into any sort of book but I still read bits of it as a reminder to myself of how harsh things were and how lucky I was to still be around to write it.

Just when I was coming to the end of the course of photopheresis treatments I was asked by the staff at the apheresis unit if I could come to one of their education days and speak to the assorted medics about what it is like to be on the receiving end of one of their treatments. I was thrilled to have the chance to do that and it was just the sort of thing I needed at that time to keep me busy.

I was well enough that I could actually feel bored but not well enough to get my 'normal' life kickstarted again so a little project like that suited me perfectly. I also just like doing presentations and what better a subject to talk about than yourself. So I prepared a slideshow and gave a talk about how those treatments make you feel and that sparked a discussion about how the whole process can be made more comfortable for the patient. The whole thing was a great success and the next time I went in for my own treatment one of the nurses who run and monitor everything told me one of the delegates was quite taken with me and was thinking of asking me out. I asked what her name was and Diane replied 'Stephen'.

So, not exactly my type then.

Back then it was usually my sister Clare who took me to most of my appointments, although as I was getting better I would sometimes go in to Glasgow on the bus. The word enjoyed isn't right when talking about any of this but I get the feeling that she appreciated being there with me at most of the appointments. I have never taken a relative in to the consultations with me even though all the books tell you it's a good thing to do. I'm happy having someone come with me but they don't need to hear all the stuff that goes with all of this. I've always just felt happier at being able to pass only what information I want out to everyone. I think when so little of my life was under my own direct control this was my way of at least being able to keep one aspect of it just mine.

Appypollyloggies

For those worried about the lack of output it's simply down to a dodgy wireless router and not related to my health. Typing things out on the phone is a bit much so I'll get back to this when I have a connection I can use from the comfort of my scratcher again.

Out of the mouths of babes

The other night my nephew Daniel was staying due to his mum and dad's shifts and he gave me a tremendous laugh when he asked his mum why there was a diving board in our bath. He was referring to the board that I use across the bath so that I can sit while I have the shower running. I love the way the eldest niece and nephews look at the world with such wide eyed innocence. They amuse me greatly and the difference they make to my life is massive.

I love it when they come and visit and play games with me because they genuinely are the people who treat me the most like it's a perfectly normal state of affairs to have tubes sticking out of you.

The kids have always been great fun for me to have around when I've been unwell but especially Maria because she was just a wee thing when I was first recovering from my bone marrow transplant and kept me company on a great number of days whether it be messing around the house or going on incredibly long walks around the town. She even used to amuse herself by helping me count out all my tablets. A special amusement was reserved for the effervescent painkillers I took which she referred to as plunk fizzes. Nowadays the boys always like to help me by putting them in water and watch them foaming up and hissing at them.

I can sense it, something important is about to happen

I know that I've said a few times about how difficult I found it looking at someone else's face in the mirror during my treatments and I thought it prudent to actually give those people who didn't experience it a taste of how big a difference there was.

For background here's a photo of me just after day 100 post transplant with my niece Maria.

I'm still quite thin but it essentially looks like me.

Now after being on steroids for a month or so I looked like this

I think you can probably agree that it's a bit of a difference. One of the weirdest aspects of it was that people didn't recognise me so people I had known from my schooldays would walk past me in the street. I went up to Aberdeen to meet my old mate Rich Wells from my time in Cardiff about restarting my studies up there with him and he didn't know it was me that walked into his office until I started to talk.

In those times I was so sure that my life was ready to get back on track but I hadn't accounted for all the side effects from the steroid treatment. Just after I started the photopheresis treatment in the December of that year I was unfortunate enough to catch a respiratory virus. I managed to spend Christmas day at home but as this photo shows I wasn't in the best of form.

The very next day I went in to the hospital and they took one look at me and said I'd be staying for a bit. I had to get arterial bloods taken which was unbelievably painful and when they took my oxygen saturation levels it was at 75%. I was in a very bad way indeed. I was in there for a fortnight and it was one of the most harrowing times that I've ever had. It was the reminder that I obviously needed that I was a very long way short of being able to move away again to restart my studies.

It's bleak enough being in hospital but at New Year it was particularly galling for me because my room faced directly down towards the city centre of Glasgow so I could watch the fireworks and lie there thinking about the fun everyone else was having that I was missing.

When I got home again I had to rethink how I was behaving. I had been going out regularly in town with my friends to maintain some sort of normality in my life but it was doing this that was giving me the infections that were flooring me so I decided that just being at home for a while was the best plan. In retrospect I can also see that my confidence had been absolutely shattered because of the steroid face and the constant shaking from the medication. I've never been short of confidence so this was a very strange sensation for me.

So friday nights were spent at home but I almost always had friends round to keep me company. It was almost always Dave and Owen but a few of the other guys came along regularly too. I would sit and munch my way through masses of food while those two drank (and Dave ate all my Haribo sweets) until they fell asleep. I can't begin to explain how much it meant that those two decided to spend their time with me rather than going out for all those nights. Don't get me wrong their patter was shite but it was still nice to have it.

And dreaming; this is not dreaming

The months immediately following my bone marrow transplant were filled with twice weekly trips to the clinic at the hospital to be assessed and to have bloods taken. As a result of those I spent a large amount of my time utterly preoccupied with the numbers reported back from my blood tests, desperate to see if I was making the correct sort of progress or looking for the tell tale signs of rejection.

It's a confusing time as having gone from being completely bald, taking the immunosuppressant cyclosporin to avoid rejection means that you become quite hairy. By which I mean that your eyebrows actually start to extend towards your sideburns and your beard takes up a lot more of your face than you ever remember having to shave before. It's all a bit teenwolf really and not a particularly good look. I felt a bit down about having to look at another different person's face in the mirror until one day at the clinic I met a teenage girl who was going through the same treatments as me. It must have been so much worse for her.

So I was constantly on edge about what my condition was and it wasn't until day 100 post transplant that I began to relax a little. Up to that point they rely on various markers from blood tests to ascertain whether you're rejecting the new bone marrow, but after day 100 they do another bone marrow aspirate and see for themselves whether it is the old bone marrow (with the Philadelphia chromosome) or the new stuff. For this one I was thankfully well sedated and within a day or so they had told me that the old bone marrow was undetectable which was a massive relief.

Then all I had to worry about was the fact that my brother was getting married a month later and I just had to avoid infections so I could make sure I go to the wedding. I did better than that in fact and even went out on the stag do with him and his mates. The wedding itself was great although I have to admit having a wee greet to myself at one point because I was just so glad I was there. I had the obligatory dance with my wee granny as well which just made it perfect.

In the months following I felt almost back to my normal self so I went down to Cardiff for a long weekend to visit my friends and to show them that I was doing ok. I had such a good time and it was amazing getting away for a bit - I even got involved in a game of football with the guys down there which amazed everyone, including me.

It was on the train on the way back up from Cardiff though that I noticed that my skin was reddening. At first I thought it was just a little sunburn but it stayed that way for over a week so I mentioned it to the docs. They saw it instantly for what it was, the first sign of a completely different sort of rejection.

No longer worried that I was going to reject the bone marrow focus now shifted to the reality that the bone marrow (being the basis for your immune system) was starting to reject me. It's a condition known as graft versus host disease (GvHD) and is what is responsible for my current plight. Now a little GvHD is actually seen as a good thing as it means that the bone marrow graft has definitively taken hold as your own but in extreme cases it can kill you. We had to ascertain which of these it was and how to treat it so a barrage of tests was conducted, including skin biopsies.

It turned out that not only was my skin under attack from my new immune system but my liver, kidneys and lungs were getting it too. The fact that even my own body was attacking me wasn't lost on my friends who, despite the seriousness of it, took great delight in knowing that even my own organs can't bear my company.

The treatment started with a random choice for a variety of treatments on offer. As it happened though I took a bad reaction to the drug tacrolimus so I was put on to a different protocol almost immediately. This involved steroids along with another immunsuppressant called mycophenolate mofetil. The varying doses of these drugs meant that I was always given them in small capsules and at one point I had to take a grand total of 63 tablets per day.

The problem with steroids is that although they do calm the immune system down, they also have awful side effects and it wasn't long before diabetes kicked in for me, which led to more medication, a side effect of which was to give me uncontrollable tremors in my hands. I was exhausted and started to put on weight at an alarming rate. I put on two stone in about 6 weeks so again I was looking at some other person's face in the mirror, and this time he wasn't particularly good to look at. It was a horribly distressing time and I ached for some respite, which came from a source in the hospital.

I was given the chance to take part in a study into a new therapy called photopheresis which could help the effects of my particular autoimmune condition. The theory is that they take a type of cell called the T-cells out of your blood and damage them with UV light and a UV sensitive drug that binds to the T-cells. These cells are responsible for immune response so if they were to be damaged in this way and then given back to you then it would 'teach' the immune system not to attack the organs it has been attacking.

It involved long sessions hooked up to the machines which separated the cells but I didn't mind that at all. I had my Hickman line removed after an infection previously so I had to have another one implanted but that was fine - it wasn't so much of an inconvenience anyway.