Into your arms I go

The lyrics I choose for these blog titles have usually got a link to the content. At least that's what I try to do. Normally the link could probably be understood by about three people but I'm explaining this one. My friend Lynn and I have a real love for the band the Lemonheads and Into Your Arms is each of ours favourite song. We have both been at concerts where when the song is being played we've phoned the other just for them to hear it too. It's a tiny little something that's bound us quite tightly over the years.

Right back when I started this blog my friend Claire (affectionately known as Bundo) wrote a little piece about what it's like to be the friend of someone going through all the stuff I have. Well Lynn has come up trumps with a short piece of writing that pretty much encapsulates how most of my friends feel. It is intended for her own blog for her business but I thought it could do with an airing here

"I want to share a story about a friend of mine today. I’ve actually been really struggling with this as his story makes me feel incredibly guilty, I don’t see him often enough and when I do see him, I don’t want to share my stuff because he’s struggling just to breathe.

Everytime I go to see him, I think that I’ll give him hypnosis and help him out, and in the end I just sit and chat, feel helpless, and go away thinking there’s nothing I can do. Then I won’t see him for another few months because I’ll allow myself to get distracted by my life. A life I’m living fully thanks to my health.

My Friend, Paul, is waiting for a lung transplant. He’s 33 and spends most of his time in bed, connected to an oxygen concentrator. This visit, he explained that he’s not even on the active transplant list yet – he’s not even at the stage where he could get that call at any minute. Right now he’s just waiting to be called for the tests to see if he can be placed on that list. It make me really angry to think that this could go on for him for months yet. He’s already been there for over a year, and no end in sight. Yet each time I go see him, he’s positive and talks about it so matter of factly.

Truth is, I talk about trying to live with integrity and passion, yet with Paul, I don’t know how to. The thing that I noticed recently was that I was bothered that two of my friends got ill while we were on holiday, there was a part of me that was annoyed because I thought we’re in Marrakech for god’s sake – make the most of being here…it's just a silly little stomach bug! Not entirely the best and most compassionate way for a pharmacist to be thinking!

The thing that bothers me most is that I’ve been so sure that Paul will get the call any day now, so hearing that he’s not at that stage makes me want to cry. But I also feel like I have no right to feel like that. He’s so strong, that I feel awkward and shallow in his company now. I feel guilty for having full health, which I know is silly too – surely I owe it to him to be living life to the full? "

For what it's worth I think she beats herself up a bit much about how often she visits as she calls often enough and we can just chat away for hours too. Her final point is always something that bothers me though. She doesn't owe it to me to be living life to the full; she only owes that to herself. I often have people telling me they don't want to tell me the troubles from their lives because they seem trivial next to mine. I used to get really annoyed by that - I worried they were ignoring important things just because they weren't as dramatic as Cancer. If something important is happening in your life you need to address it and it's ok to tell me all about it, not least because knowing that life is just carrying on is curiously therapeutic, but also because I'm a right nosey bastard.

I like it that way; but then again maybe.

I was at the renal consultants yesterday to discuss the results of my renogram, allied with the ultrasound of my kidneys and blood tests of kidney function.

The upshot of all this information is that I have a minor obstruction in one of my kidneys which is causing it to drain less effectively than normal. When I say less than normal, it is only very marginally so, but what it looks like it happening is that it is only intermittently causing a problem which would perfectly explain why there are peaks and troughs in the creatinine level in my blood.

This is potentially good news as it might mean that it's not any drug issue that is causing the kidney function to be an issue at all. That said, we are still pursuing with the program of adjusting my repeat prescription drugs for more kidney friendly versions and staying off cyclosporin for a few months.

So where to go from here then? Well the idea is that I will see a urologist (yet another consultant to add to my list) who will decide if this obstruction actually needs addressed in any way and from there that information will be passed to the lung transplant team to do with what they will. The great hope is that the urologist will pass me off as ok and the transplant team accept that I am safe for transplantation.

The wait to see a urologist will of course push the program further back but the longer I have without taking cyclosporin the happier I actually am.

In other news I had to send my sister clothes shopping for me today as my clothes are getting a little bit tight. This has prompted me into further spacing of my night time feeds as I am maintaining a weight of about 60kg quite well.

The future teaches you to be alone

I have a hellish sore throat and a bit of a chest infection. Nothing that will require hospitalisation, just rest and lots of soup.

I have taken the decision to reduce the number of feeds that I put on overnight through the PEG tube in my stomach. I'm well past the target weight of 54kg and putting what is essentially just a fatty liquid into my body is doing bad things to my cholesterol level. I am on a statin drug to help bring that back down to a normal level but it's always going to be a battle to keep it under control if I'm pumping liquid fat in every night. So when I reached 60kg I decided that it was probably ok to alternate the nights where I put a bottle of feed on.

My dietician phoned the other day just because she is now on a different day from my clinic days to make sure I was doing ok and completely agreed with that plan. Claire has been with me all the way from the bone marrow transplant and has been a really good friend as well as looking after my health. Her phone call was well timed too as it gave me the chance to ask her what would happen with my PEG tube as it's nearly two years since it was put in and that's how long they're recommended for. She's going to check but as long as the tube is still working perfectly, which it is, then there's really no need to replace it. This is the answer I hoped for as I can't be bothered with another procedure, even though it would be much less of an intrusive procedure than the original placing of the tube. I can still do without it.

I had a renogram last week and it confirmed that there is a little bit of an issue with my right kidney. It is a little slower at draining than the left but it is such a small difference that it is regarded as pretty negligible, and certainly not a reason to preclude me from a transplant. It also matches up with a slightly darker area that was seen on the ultrasound when they performed that. I'm going to see the renal consultant again next week - I've got the blood tests done that he wished so he can now give me a better idea of where we are. He explained to me last time that my kidney function appears to be going through cycles where the creatinine levels go up and down. He suspects that when I was down in Newcastle and had the Glomerular Filtration rate test done it just so happened that I was at the peak of one of these cycles, so it isn't indicative of my overall renal health. Here's hoping the next time I go down I'm at a trough in the cycle.

I woke up today with this feeling; better things are coming my way

When people go into medicine they often start out with an idealised view that they're doing it because they want to help people. Somewhere in their training a lot of that is beaten out of them simply through seeing such horrific things, often on an daily, if not hourly, basis. They start to view patients as bags of symptoms because it's quite simply the best way for their mental health to cope with the enormity of it all.

As they proceed up the pecking order something odd happens and by the time they reach consultant level they start treating you first as a human being. That's my experience at least.

What comes with that experience though is a firmness in your belief that you are in the right and this is why sometimes consultants can come across as arrogant. Getting people who are so forthright in their opinions to agree on a course of action therefore isn't always easy. I now have consultants for

• Haematology/Oncology
• Respiratory
• Renal
• Oral/Maxillofacial
• Lung Transplant

My primary carers are the haematology team at the Beatson Oncology Centre, but ultimately heading towards transplant the consultants with the largest sway are the transplant team. Getting these two to agree on what measures to take going forward has been a slow process and it is only with the recent addition of the renal team that has really allowed an actual concrete plan to be formulated. The renal consultant has put forward a convincing case that I should be able to tolerate the post transplant drug regime and that has led to a decision.

So we now have a plan and that is to take me off Cyclosporin, the immunosuppressant drug that has been doing most of the damage to my kidneys, for a few months to give the kidneys a bit of a rest. After this we will then try a month of being on the full dose that would be given post transplant to see if my kidneys really can cope with what they would have to if transplant were to happen.

What this means for me is that I will now be pushing back my return trip to Newcastle by several months but I don't mind that at all. I am perfectly comfortable and having waited this long for progression I'm just happy that I know what we're going to do.

The other really sensible thing the renal consultant did was to go through my entire repeat prescription list (all 22 items) and look for alternatives that are kinder to the kidneys. There's been a few changes already on that front - doctors at any level tend to prescribe what they're most familiar with rather than the best drug for a particular patient. I understand this completely - few drugs have lots of information on what their long term use could lead to after all and doctors tend to prescribe the most common drug first and only when it causes a problem do they change it. I don't expect doctors to be clairvoyants.

In other news one of the great loves of my life (and now one of my closest friends) is back in the country after a year away living in her native America. I can't tell you how relieved I am that I am in relatively good health and nothing bad happened to me while she was away, especially as one of her best friends died while she was over there. I've been worried the whole time she was away that the worst might happen with me too. I can't wait to see her again to hug the life out of her.

I lost my faith in the summertime cos it don't stop raining

One of the more surprising aspects of my health that the transplant team demanded be in order was that of my dental health. I suppose if you stop and think about it then the mouth is a fairly primary source for infection to take hold in the body so once I had considered it it made sense and I even remember being told it pre bone marrow transplant so I perhaps should have remembered but I've got a lot to carry about in my mind so there are bits I forget. Not much granted but little bits.

To this end I've had to have two teeth out, one wisdom tooth that had impacted like two others previous, and another tooth out not because of any decay but the x-ray showed that it would likely cause trouble in the future not only in itself but for the surrounding teeth, so after a bit of an endurance test out it came. I've also had a few filling repairs done so I'm now in perfect dental health.

On the advice of the dental hygienist I got a posh sonicare electric toothbrush that has been a complete revelation. I've become somewhat evangelical about it. She also introduced me to the marvel that is the interdental toothbrush - these curious little things look just like shrunken test tube cleaners and they get right in the gaps between teeth. It's a really odd feeling but they're also brilliant. All of this allied with assorted mouthwashes and my mouth is almost always perfectly fresh feeling. It keeps the docs happy too.

As well as this going on my assorted docs are going through my entire prescription list looking for alternatives to the current medications I take that are a little less damaging to the kidneys. There's quite a few that can be swapped apparently so hopefully my next set of blood tests show a bit of an improvement.

I've had a good few visitors in recently and they all have the same opening gambit - sorry I've not been sooner. In almost every case I don't care how long it's been as I know how busy people's lives are but with one friend it had been nearly two years since he had been to visit. I've got friends that live in other countries that visit more regularly than that so I've no idea why it took him so long but it did. Still as soon as he was here it was like nothing had changed and that's the point I really want to make. It doesn't matter at all how long it's been since you've seen your best friends - as soon as you do see them you resort to type. If only a few others trusted that I'm not angry that they've not visited and just made the effort they'd feel better as well. For what it's worth as well as opening with the same line they all leave with the same line, that it'll be less of a gap next time. We each know it's a lie but it's a harmless one.

Dream trippin'

I know I've resorted to posting an XKCD comic strip before but sometimes they summarise things much better than I could ever manage. If the pic messes up your screen just click the link and then scratch your head at the insanity of it all

http://xkcd.com/938/

Sometimes Jim there's a Sistine Chapel splattered on tenement stone

You may recall that the upshot of my trip to be assessed in Newcastle was that everything was ok to go ahead to be placed on the active transplant list apart from an anomaly with my kidneys. There has been some damage done to my kidneys by years on cyclosporin (to suppress my immune system).

So today I went to see a renal specialist, along with my sister who happens to be a renal nurse and also used to work with the consultant who saw me, where I got an ultrasound scan of my kidneys done and had a good long chat with the doctor about my situation.

The news is that the scan itself showed very little wrong structurally with the kidneys, although a more in depth report will follow, but from the first analysis of the scan there isn't anything like a blockage in my plumbing to account for the slight elevation in my kidney activity. This means that we can pretty firmly say that it is indeed the medications I have been on that have caused the damage there has been. This, you'll recall, is an issue because I would have to be put on large doses of the same drug post lung transplant and there's no point fixing my lungs only for my kidneys to fail.

Today's discussion though was very fruitful as we went through my entire drug regime looking for all the drugs that can cause kidney damage with the view of replacing the ones I'm currently on with some that are a little kinder to the kidneys. We found a few of those and this led to the greatest revelation of all from the consultant. According to him my kidney function shouldn't be a barrier to transplant at all, even at current levels. He has observed a trend where there are peaks and troughs in my creatinine levels (which roughly correspond to kidney function) and it just so happened that when I was tested in Newcastle it was at the peak of that cycle.

Of course the opinion of one consultant isn't necessarily going to completely change the opinion of the transplant co-ordinators but today's consultant said he was going to write to the transplant consultant (as well as all my many other consultants) to put the case forward strongly that I will indeed most likely be able to tolerate the post transplant drug regime.

Then came a discussion about whether the post transplant drug regime could in itself be changed. There are other drugs available to suppress the immune system, but cyclosporin (sometimes in tandem with another type) is the tried and tested route so it may be hard to get the transplant team to accede to such a plan. Still it's all food for thought for me and for the docs.

It might just be a baby step but I'll take any step forward as a positive right now.