Transplant diary 3: not a very patient patient

Once I get home, the biggest problem is still the excess fluid that I’m carrying. I have to travel from the hospital to my home in my pyjamas, as I can’t get my trousers back on, and my sister buys me several pairs of leggings so I have something to wear. I weigh 8-9kg more than usual and I can’t bend my knees properly because of the amount of fluid in them. Once home, any tasks that involve standing up for any period of time – cooking, washing up or having a shower – make all the fluid pool in my legs which then become even heavier.  I do some brainstorming and come up with a few projects that I can work on over the coming weeks while sitting down with my feet up:  one of these is my blog. Naturally, I also succumb to quite a bit of daytime TV as well – possibly too much, I realise, when I wake up at 2 o’clock one morning and all I can think about is the current plot of Home and Away. Friends and family visit and call, do my cleaning and shopping, bring me books and take me out and about and so I am kept occupied.

Even as I say goodbye to the hospital, I know that I’ll be back in 2 days’ time: a key part of my recovery will include visits to the transplant clinic, with urine and blood tests and sessions with the doctors or the transplant nurses, 3 times a week for the first 3 or 4 weeks:  if my life wasn’t already dominated by having to pee in those teeny tiny containers  – which I’ve personally always suspected were designed by men, for men – it certainly will be for the foreseeable future.  Clinic visits will drop to twice and then once a week as I (hopefully) improve over the next 3 months or so.

At my first visit to the transplant clinic a week after the transplant, the doctor removes the dressing over the surgery site and reveals a scar of some 20cm which starts under my navel and curves up to the right like a crooked smile. They don’t remove one of your own kidneys when they do a transplant but graft the new kidney on so you end up with 3. My new kidney is on the right side, and initially I feel slightly constricted, which makes putting on my right shoe a bit tricky.  I raise the subject of the fluid on my legs with the doctor, and my impatience at what I feel to be my slow progress. He points out that I have just had major surgery, and that expecting to bounce back within a week is perhaps a little unrealistic.   Although I know that I can’t have any direct contact with the donor family, I ask if I can send them a card and find out that I can: it needs to be written anonymously, and can be passed on to the family via the transplant coordinators.

Eventually, around 3 weeks after the transplant the fluid has started to come off:  I take my first ‘proper’ walk of around 10 minutes in the streets near my house, and realise things are suddenly feeling a lot easier.  The next day I walk for around 20 minutes, and every day after that I make sure I get out of the house for a while, usually to the local high street. Now that I am moving again things improve much more quickly.  I start taking the train to my hospital appointments, as although this feels like an effort, I think it’s important to introduce some ‘normal’ activities back into my routine.

Even in the early days of my recovery, there are signs of transition: around 3 weeks in, the medical supplies company collects all my unused dialysis fluid along with the dialysis machine. I am given a date in mid-March for surgery to remove the peritoneal dialysis tube (known as a Tenckhoff) from my abdomen (a link below gives information about the different types of dialysis). The decision to have the tube put in last summer was probably the most difficult I’ve ever had to make, and I think I’ve only grudgingly got used to having it in. As the date approaches for the surgery, I find I’m increasingly excited as I look forward to having a ‘normal’ stomach once again – albeit one which now bears an interesting patchwork of scars.

I am aware that these blog posts, written as they were in the grim early days post-transplant, have probably been a bit of a misery memoir so far. So I am glad to report that as the days go by the benefits of now being off dialysis do start to filter through to me.  Although dialysis marked a huge change in my life, once I had adjusted to the new routine and worked out how to manage any glitches that occurred on the way, I did get used to it. I was able to return to work full-time, go out hiking, have weekends away and a social life. That being said, there are things I definitely won’t miss about it – these are just a few:

Having to worry about constipation all the time – (did I mention how glamorous being a kidney patient is?), as this can obstruct the dialysis tube or even cause it to move.

Not being able to just jump in the shower without having to change dressings, clean exit sites, worry about hygiene etc (ditto swimming).

Having to watch my phosphate intake (on dialysis I had to restrict my intake of phosphate-rich dairy products, eggs, nuts and other foods).

Being woken up abruptly in the small hours by the alarm on the APD machine because of an obstruction or because I’ve rolled on the tube.

Not being able to jump out of bed to go to the toilet in the middle of the night, but having to wait until the machine reaches the right stage of the cycle and then detaching and re-attaching myself to the machine.

Not being able to go away for weekends or holidays without having to take or organise dialysis supplies.

Having to give myself EPO injections into my leg to treat anaemia – surely the least fun you can have in your bedroom with your trousers off!

I could go on, but you get the picture.

In closing this third diary entry, I would like to say one more thing. For all that this has been a gruelling experience, and not one I’d be keen to repeat any time soon, I would never want to forget how unbelievably fortunate I am to live in a country with a highly developed system of healthcare that – while not ‘free’ – this is one of the things our taxes pay for, after all – is free at the point of need.  Not only was I able to access the treatment that I needed in the form of dialysis, I was able to choose the type of dialysis that was best for me and the way that I live.  There are an awful lot of countries in this world where such services simply aren’t available, and where a person with my health needs would either have been left to die or would have only a limited range of treatment options. My personal view is that paying taxes is part of the privilege of living in what is, despite its problems, a relatively stable and well-developed country, and I pay them gladly. Moreover, the system for organ donation and transplants in this country is highly developed and well thought out. Organs are allocated according to a number of criteria, but these don’t include your ability to pay or who you know.  The system that we have reflects what can be achieved when the compassion and kindness of strangers – the donors and their families – a high level of medical expertise and ethics, and a well-developed health service combine. It is definitely something to be grateful for.

Types of dialysis: http://www.nhs.uk/conditions/Dialysis/Pages/Introduction.aspx

Information about organ donation: https://www.organdonation.nhs.uk/

Beth’s story www.rememberbeth.co.uk

Goodbye, dialysis machine and supplies…what will I do with all the space?

Advertisements

Transplant diary 2 : Sleepless in ward 8b

There is little I can do the day following my transplant beyond lying prone and observing the comings and goings of the ward. I have a catheter, so my urine output can be monitored (the glamour!), and a neck line through which drugs and fluid are administered. In addition, I have a drain into the operation site, a blood pressure cuff on my arm which takes periodic readings, and a pulse monitor is attached to my finger.  I have a morphine pump for the pain which I can administer myself, and this, although effective, also sends me into a doze every time I use it. I am not used to being so inactive, but attempts even to push myself up the bed need to be undertaken with care and cause a lot of pain. I manage to speak to my sister on the phone, and suggest that she visits the following day when I will, hopefully, be more awake.  At least I am able to eat and drink now, having been nil by mouth from 5.30 the previous morning, but my appetite is severely dented in the aftermath of the anaesthetic. However, I do have a thing for tea, and drink lots it served in a sippy cup.

Various members of the medical team visit throughout the day, and inform me that thus far things are looking good: the new kidney went pink as soon as it was attached to the blood vessels, and my creatinine levels have already fallen.  The nurses and doctors are, for the most part brilliant – professional, approachable and willing to answer all my questions, even if most of the doctors are so young and fresh-faced they look like they should be in school uniform (evidently I have reached that stage in life).  Each day one of the devices or tubes will be removed from my body, with the last being the catheter. Following an ultrasound the morning after the surgery to check that there is no build-up of fluid around the new organ, the drain is removed – one down, several more to go.  There is to be no driving for the next 6 weeks, and then I all being well I will have a second operation to remove the dialysis tube from my abdomen.

Apart from boredom and inactivity, my biggest problem while in hospital is the inability to get a good night’s sleep.  A number of factors combine to make this a problem. Not only is the ward stiflingly hot, but some of the new drugs I’m taking cause hot hands and feet; even throwing off the thin hospital blanket, I can’t seem to get to a comfortable temperature. I am on an acute ward just opposite the nurses’ station: the lights never go out completely (and periodically someone will switch them on and forget to switch them off again), and voices outside the ward are easily audible.  All in all, the biggest problem is noise. The aforementioned monitors periodically ding and ping their way through the night – I am never sure whether they are supposed to do this, or if the noise is some kind of alarm. A busy nurse might take 10 minutes or more to get to you to stop the noise, only for it to start up again another 10 minutes later. Further down the ward, another patient calls out to the nurses throughout the night, and won’t stop until someone pays him some attention.  From time to time, a patient will press the call button which sounds an intermittent alarm in the corridor – quite understandably the nurses can’t always attend immediately, but this in effect means yet another alarm which can go on for 10-15 minutes before someone is able to switch it off.  I begin to wonder whether medical staff become so used to these sounds that they become a kind of white noise for them. However, for the patient, the incessant noise is absolutely infuriating, and I find myself becoming increasingly frustrated and angry. On day 3, I have had so little sleep – and therefore so little opportunity to recover from the anaesthetic – that I start the day with a headache and nausea and a severe sense of humour deficit.  I have to fight to keep the bitter-tasting steroid tablets down during the pre-breakfast drugs round, and lie in bed tearful and generally feeling very sorry for myself.

Eventually on the Sunday I am able to get out of bed for a while. I am still in surgical stockings, but now have a build-up of the additional fluids that I’ve been given to help kick-start the new kidney. I am normally a size 10, but my now enormous upper legs bulge over the tops of the stockings, and the skin from my waist downwards is hard and tight. Determined to start shifting the fluid, I very gingerly try taking hourly walks up and down the corridor and the flight of stairs outside the ward. The catheter is still in, so this is a delicate operation to say the least, and I keep away from the public areas of the hospital where a woman waddling around carrying a bag of urine is likely to attract unwanted stares. For all my attempts at activity though, the fluid refuses to shift until, around 2 weeks post-surgery, it begins to fall away in tiny increments.

Five days after the surgery, all still appears to be going well, and I am deemed fit enough to be discharged from hospital.  Gradually all the bits and pieces of equipment that I’m attached to have been removed, with the horrible neck line and the catheter the last to go.  All the medication that I was taking on dialysis has been stopped, and I am sent home with a carrier bag  of new drugs, the names of which sound either like a Roman leader (Tacrolimus was surely a contemporary of Caesar Augustus) or a holiday resort in the Balkans (ski break in Aciclovir, anyone?)  These drugs are my new best friends, and I neglect to take them – or simply forget – at my peril; without some of them, my body could reject the new kidney and so I will take them permanently. There is a steroid and an anti-rejection drug, anti-virals, aspirin to prevent blood clots, a blood pressure tablet and a tablet to protect my stomach, along with 2 types of painkiller – 9 items in total, although some of these will be phased out in the first few weeks. I live on my own with no family close by, so the hospital calls a taxi to take me home, and even though I have mixed feelings about going home to an empty house, I can’t wait to get back to my own space.  Once home, I unpack, make a cup of tea and collapse on to the sofa with a massive sigh of relief. It is bloody marvellous to be back.

Transplant diary 1

On January 27th this year, I was fortunate enough to receive a kidney transplant after just over 2 years on the waiting list and 6 months on dialysis. This is the first part of my record of the experience.

No one likes the middle-of-the-night phone call, do they? You jerk awake and shoot out of bed to answer, all the while running through your mental tick list of potential scenarios involving serious illness, accident or death.  That being said, when my own phone rang at 4am one Friday at the end of January 2017, my first thought was ‘Better get that,’ swiftly followed by ‘Oops, I can’t.’  I was on overnight dialysis, and although I was well versed in the routine for detaching myself from the machine, it wasn’t something that could be accomplished within the 8 rings before the answerphone kicked in.  The caller hung up, but as I lay there with my heart thumping, I noticed that the light from my mobile next to the bed was also flashing.  The news that followed was, thankfully, not about accident or death: the caller was one of the transplant coordinators at my local renal unit telling me they had a kidney for me. Could I get myself ready to be collected by 5.30?

It helped a little, I suppose, that this was not the first such call that I had received. A similar call the previous September, albeit at the more sympathetic hour of 9 in the morning, had led to a day of waiting around, tests, and yet more waiting around in the renal ward before being told that the kidney was not good enough for transplantation.  Nonetheless, this time I spent a good 10 minutes staring blankly at the ceiling and mentally working through the things I ought to have been doing that day before moving into action. Work was at a frantically busy stage, and my team mate was about to go on maternity leave, so I even briefly considered saying ‘Thanks, but no,’ before realising just how dumb that would be. By 5.30, I had packed a bag with everything I might possibly need for a stay in hospital, shaved my legs (well, of course!) and done the previous night’s washing up, and all that was left to do was to jump in the waiting taxi and head off into the darkness.

Hospital routine marches to the beat of its own peculiar drum, and so it was that, having arrived at the renal ward at 6am, at 7pm I was still lying on my bed, hungry and thirsty and attractively attired in blue-and-white checked hospital gown and elasticated stockings and wondering if, once again, it was to be a no-go. There being no mobile phone signal in the ward, I had spent the day wandering around the hospital trying to update friends, family and work as to where I was and what was happening, and cancelling arrangements for the coming days. Periodically someone from the medical team would come and either take blood, give me an injection, feed me drugs or have a chat about what to expect, but come the afternoon most of the activity had tailed off. I was just resigning myself to the possibility that I might be sent home again when two nurses turned up and told me it was time to go to theatre.

Here’s something I have discovered about people’s expectations of how dialysis patients will react when they get to transplant. When I was called in for the transplant that never happened last September, two nurses in succession asked if I was excited. People know that being on dialysis can be hard and disruptive to normal life, so they think you’re bound to be ‘woop woop’ at the prospect of a transplant. Well, I wasn’t ‘woop, woop’, actually I was really scared.  One thing is certain once you have kidney failure:  from that point on and for the rest of your life, nothing is certain at all. A transplant can mean being relieved of the routine and restrictions of dialysis and a return, to a large degree, to ‘normal’ life. But I had started dialysis just 6 months earlier which was in itself a huge and difficult transition, and I had only recently begun to feel at ease with the new routine and the effect it had had on my body.  On top of that, it can take months to recover from a transplant and to adapt to a lifetime on a strict drugs regime. Transplants can also fail, and there are no guarantees of how long they will last – it’s not uncommon for a kidney patient to have more than one transplant in their lifetime.  As I tearfully explained to the anaesthetist while waiting to go into theatre, my family history doesn’t help much: my aunt almost died post-transplant back in the ‘90s, and my mum’s new kidney lasted just 8 years before it began to fail.  Both they and their middle sister ultimately died of the effects of renal disease.  The medical team who have looked after me in recent years have been brilliant, and the services efficient and well-organised. However, in my experience the focus is entirely on the physical aspects of treatment, with little or no attention paid to the emotional or psychological effects of going through such a huge life event; nobody asks you how you feel about what’s happening to – or being done to – your body. And all these things are hard to say when you know that the reason that you have this sudden chance at a new life is another family’s sudden and tragic loss of a loved one; I had chosen not to hope for a transplant for that very reason.  In the end, all I could do was choose to trust the medics who said that this was the best long-term solution for me, and grit my teeth and go ahead.

Coming round in the darkened recovery room after the transplant is a succession of blurred images.  I strain to see the clock, and realise that it is just after one in the morning. I have an intense pain in my right side and groin, and any attempt to move induces nausea.  My mouth is like sandpaper, and a nurse periodically offers me sips of water through a straw. The nurses want to give me a chest x-ray, which will involve lifting me up to put a metal plate behind me. Each time they go to move me, I ask them not to, but eventually they have to go ahead, and the movement makes me retch painfully into a cardboard bowl.  Once back on the ward, and despite the anaesthetic, I wake repeatedly as the monitors for my drip, heart and blood pressure ping and bing throughout the night.  That was day one.

Information about organ donation: https://www.organdonation.nhs.uk/

National Kidney Federation: http://www.kidney.org.uk/

Polycystic Kidney Disease Charity: http://www.pkdcharity.org.uk/