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?

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