Give me a second I, I need to get my story straight...

I've been agonising over this post for weeks now primarily because I needed to get my fuzzy brain into gear and able to put down what I really think about the subject but also because I know it closely affects people that I care about.

You see I'm going to write a bit about a friend of quite a few of the people that I went to school with who unfortunately died as a result of secondary complications after a kidney transplant. She unfortunately developed skin Cancer which was misdiagnosed by GP's and the overall feeling is that she wasn't given adequate information to give 'informed consent' prior to her transplant. You can read more about it

here

Now what you may ask am I doing getting involved in something that is so emotive and you'd be right to do so. Well the reason for it is two-fold. Firstly I have to say that it is entirely at odds with my own experience of two transplant procedures (bone marrow and double lung) where I have been given nothing short of mountains of documentation and consultations detailing the risks of what I was to (or in the case of the lung op am hopefully about to) undertake, whether they be the immediate risks of operations or the long term risks of the mind boggling radiation levels I was exposing myself to, and the short and long term risks of the drug regime I would need to be on to suppress my immune system post transplant. In fact in my first meeting with my main consultant who took me through the whole process I was told eight times in a half hour consultation of how my treatment for the bone marrow transplant could kill me. To say I was given informed consent is to massively underestimate just how well drilled I was. The crucial point relating to the above case is that I was told expressly that both the radiotherapy and the immunosuppressant drug Cyclosporin that I would have to take would massively increase my chances of developing skin Cancer later in life. These things of course are relative because even massively multiplying the chances of developing skin Cancer by the normal prevalence in the population statistically leaves a relatively small risk. So Shaz was really, desperately unlucky to contract it.

That brings me to my second point - you are told of many such risks (like I said 8 different ways to die) but it is my experience that even armed with this knowledge that patients deal first and foremost with the thing that categorically is going to kill them and then worry about the statistical likelihood of developing other conditions based on your treatment should they present themselves in the future. So I get to wondering whether in the above case if they were in fact better informed of the risks associated with Cyclosporin (which is after all a group 1 carcinogen) would they have still opted to go ahead with her transplant? My own experience coupled with the dozens of other patients I know who have undergone transplants is that she would have gone ahead with it even accounting for the risks. Of course she may not have, and been the exception - I don't wish to speak on behalf of anyone, especially not someone with no option to correct me if I'm wrong. After all like I said earlier transplant patients are nothing but pragmatic and do tend to focus on the tangible threat in front of them and will only worry about the long term implications if they actually have a long term to even worry about.

All of this though is to miss the point entirely. My experience is palpably different from that of Shaz. She didn't receive all the information I did and I wonder why that is. Part of me wonders if it is down to just how tenacious I was when I was first diagnosed where I was constantly asking questions of the transplant staff coupled with them knowing I had a degree in Medicinal Chemistry so they were prepared to talk to me at length about what the treatments did. I also knew a fair bit off my own back from having studied anti-cancer drugs as part of my degree and have amongst my friends a pharmacist and a doctor who were always available to answer any questions I wanted clarification on. Most patients don't have that background or are fortunate enough to have friends that are able to help as much as mine though and so rely entirely on what their doctor tells them and here is the crux of this case. Shaz was desperately let down by her primary carers and by the doctors who didn't recognise a lesion as being skin Cancer even though her medical history should have set alarm bells ringing loudly.

And so to my conclusion. Even though it doesn't relate to my own experience I am firmly behind the campaign by Shaz's family to ensure that absolutely no patient is left without the power to give INFORMED consent for their own treatments.

I hope that everyone understands what I just wrote and gets just why I have really struggled to compose my thoughts about it. 

P

So tell me; am I looking better?

Well here goes - I am now officially on the active lung transplant list. All the administrative stuff has been done and now the wait begins. Now this doesn't make a single bit of difference to my everyday life but somehow it feels like a different kind of waiting to what passed before. Then the waiting was always tinged with a nagging worry that they would find something that would preclude me from being suitable (or even able) to be put forward on to the list. Now the wait is based on a much more comfortable premise; that some day in the near future I'll get the phone call to tell me to get ready to go down for the operation. That is, psychologically speaking, a totally different type of waiting. All I need to do is to keep my health relatively stable, which it has been for a long time now, and I won't have anything to worry about.

The only caveat to all this is that I need to let the transplant co-ordinator know if I develop an infection worthy of a course of antibiotics, as that will preclude me from being able to be operated on. In that instance I'd temporarily be removed from the list for the length of the course of antibiotics. It's up to me to keep them informed of any slight change to my health. I'll also need to go down to Newcastle every three months for an overnight stay to get the normal tests to see if there's been any tangible change in my condition, most notably what antibodies they find in my blood as these are imperative to finding a good match and having a relatively trouble free recovery. 

With the news that I'm now on the list the transplant team have requested that I have any dental work required done and I'm happy to report that I've had that nearly all done now - I just have a single filling that needs to be replaced to be done next week. They are also adding some mouthwashes to my repeat prescription list with my GP as dental health is a real marker for your overall body health. When I spoke to the maxillofacial consultant today she said that the x-rays have't shown up anything untoward and from her inspections there's nothing to concern the transplant team so she's happy to sign me off as being in perfect dental health. I mentioned to her that there are certain foods that seem to trigger blood blisters in my mouth and she said that isn't uncommon for people who have had the treatments I've had. It's a sensitivity to acidic things that causes it apparently and I deal with it through the use of mouthwashes like I have done since the bone marrow transplant, but she did say if I have even the slightest problem with it to give her a phone as she'd be interested to see a flare up to rule other things out.

As well as dental health I had to have a course of vaccinations which have all been completed now so all things considered I'm ready to go. I'm even getting my bag ready with clothes and all the other stuff I'll need to take with me down should I get the call.

Having read a few other people's blogs I know that getting the call doesn't necessarily mean that I'll get transplanted because the transplant team often decide that a set of lungs that were deemed worthy by the team who harvested them aren't actually good enough to be used for transplant. So it could come to pass that I could be halfway down and get told to turn around or I could even be all prepared and ready to go and they decide not to go ahead. This is just something I'll have to deal with should it happen and not worry in advance about as it's outwith my control. This is something that will hopefully become much less prone to happen with the advent of the ex-vivo lung perfusion process that is now being used, which makes many more sets of lungs viable for transplant so hopefully my first trip down will be the only one I'll have to make.

On the Saturday just past there was a requiem mass held for my friend Alice Anne, whom I have spoken of in my last two posts, which allowed many more people to pay their respects than the hastily arranged cremation service of a few weeks ago. Having a religious service clearly helped the family come to terms with their grief and even the deep rooted ex Catholic in me could see that it was a powerful force for good. It was lovely to catch up with even more people from my days in school but it was not easy in so many ways, one of which is down to my own vanity. I decided I was going to try and show how strong I actually am and so didn't take my wheelchair. Now the distance between the car and the church I could handle, just as I could the stand up - sit down - stand up again - kneel progress of the mass but what I hadn't accounted for was the standing about talking to people after the service. I managed for a while and then just had to resign myself to sitting down and catching people's attention and they would come over and talk to me where I was perched. It was a smidge embarrassing to have Alice Anne's mum running about after me making sure I had a coffee and something to eat but my mum told me to just let her do that as keeping busy was what was helping her to handle things. I had a wee chat with her which was absolutely heartbreaking because even in her moments of great personal grief she was telling me how she prayed for me regularly. Indeed that seemed to be the running theme of the day. The number of people who told me that I was the object of their prayers was humbling in ways that I can't possibly conceive to explain. I was also told by many people that they were really surprised to see how well I looked because, having heard of how grave my situation had been previously, they perhaps were expecting to see someone looking as bad as I did two years ago. I've always been wary of compliments since the days where people told me that I suited being bald after my hair fell out post-radiotherapy (I really didn't) but I took the compliment that I was looking well on Saturday entirely at face value because I've actually noticed it myself recently. The extra weight might mean I can't fit into a lot of my clothes now but I look a lot healthier than someone in my situation probably should.

I clearly overdid it, even sitting down talking to people and when I got up to leave I didn't feel so steady on my feet so when the offer came from my old friend Monica for an arm and someone to lean on while we slowly ambled to the car I took it without hesitation. This is a sign of progress for me as I can be terribly bloody minded about wanting to do things myself but I've no reason to let pride get in my way with such an old friend so when the offer of help was given I took it graciously. We all made the usual promises to try and see each other without waiting on something as dramatic happening and while I know that real life often gets in the way of these plans, especially now so many of them have families to deal with first and foremost, I do desperately hope we all see each other sooner rather than later as, like I said in my first post on the topic, these are the friends who knew you as you were actually becoming you, and that is a very sacred position. You never have friends quite like those you made as a teenager. Far be it from a heathen to express such thoughts but God bless every one of them.