I've been feeling a little anxious of late. More than usual I should say. Something more than just worrying about Jack Welsby's fitness or my cat's dismissive nature. That's because I had a blood test earlier this week.
In a few weeks' time it will be four years since I had a kidney transplant.
I was diagnosed with CKD (chronic kidney disease) in 2007, fully 15 years before my surgery. I managed to avoid dialysis during this time. That was fundamental for my mental health. I had several close brushes with it as doctors ummed and ahhed. I had peritoneal dialysis explained to me in detail (you don't want to know). A dialysis nurse came to the house, and we had in-clinic chats about how travelling abroad might work if you need to artificially clean your blood for four hours, three times a week. All of this convinced me that dialysis was my Armageddon.
So I feel very fortunate for that. But having a transplant does mean that I have to have regular checks and take copious amounts of medication. The meds make me more susceptible to pretty much everything you can think of except kidney rejection, which they are designed to prevent.
Normally monitoring just means a blood test and a chat with a doctor - sometimes over the phone will suffice - every three or four months. But my last couple of tests have had issues. Nothing catastrophic, but enough to necessitate more pin-pricking of my already battered veins.
The first problem was that the level of Adoport - one of the immunosuppressive drugs which protects me from rejection - was a little too low. That prompted a follow up test which brought back a problem with my level of white cells. They help fight off infection. They weren't up to scratch, hence this week marked my third test since early December.
Apart from the anxiety about my veins which often make blood tests difficult for me, this raises fears about what comes next. I spend far more time than is sensible or logical obsessing about whether I will get a call directing me to A & E for another stay at Hotel NHS.
Feeling well does nothing to quell these anxieties. On more than one occasion I have been admitted to hospital based on a test result without even the mere suspicion of a symptom. Feeling fine while medical experts tell you that you're not is a difficult psychological juxtaposition.
I have been admitted to hospital three times for a total of five weeks since my surgery and it never gets any easier for me. I'm just not good at coping with it. Knowing that in all likelihood I will be fine doesn't change my response. I panic, get angry and frustrated and become quite unpleasant to be around. The fact that I felt well on one of these occasions just made me more frustrated and heightened my anxiety.
This is different for me if my hospitalisation is planned. Although I didn't feel unwell at the time I was admitted for my transplant I understood the point. I had a clear goal. Surgery, new kidney, avoid dialysis, live fairly normally. I wanted to be there in a sense because I saw it as improvement and progression.
That feeling doesn't really hit when you are told that you are being treated for an infection that's not bothering you on the surface. You see the logic in clearing the infection to prevent it getting worse and symptoms appearing. But until you feel those symptoms you don't see the urgency.
There are things that can help if you find yourself in the unfortunate situation of having been admitted without the mental preparation that planning allows. Once the nurses have stopped fussing around changing sheets, taking more blood and serving up your daily cocktail of drugs, when the doctors have called in to update you on how ill or otherwise you are, there's a lot of time when you're largely left alone. Unless the doctor has advised that you need some kind of Hellish further investigation or even a simple scan. Those things take time but don't expect it to go quickly.
If you're left to rest then you have a chance to employ some coping strategies. For me my iPad is essential. This is so that I can read, write, solve puzzles, watch TV and films all of which help. The boredom would exacerbate my stress otherwise. I remember having one spectacular meltdown when the wifi wasn't working and I was faced with the prospect of spending my time alone staring at the walls or worse - putting the TV on before about 7.00pm. The Chase excepted.
This was a depressing and even frightening prospect for me. In hospital boredom is your enemy. You might like daytime TV in which case you'll probably be fine. The TV doesn't ordinarily fail. But if you do get bored then it will give you time to overthink your location and your circumstances and the possible outcomes.
And that time will pass more slowly than it will if you are distracted by something more pleasant. Next time I am hauled in - and the nature of this beast is that it will happen - I'll probably take a physical book to cover the bases. On the occasion of my meltdown I was rescued by my partner's technical knowledge and mobile phone tethering.
This feels like a good time to mention - if you don't already know - that I am a wheelchair user. My hospitalisation often means I am given a permanent catheter for the duration of my stay. And not one with a neat, small bag at the end which could be managed to allow me to retain some mobility. No. This bad boy drains into a large box, the contents of which are regularly pored over by doctors and nurses to check the condition and the flow. Plus I am almost always hooked up to some IV monstrosity.
The first and most obvious problem with this is the loss of my independence. Wheelchair users are fiercely protective of their independence. They don't really want things done for them that they can find a way to do themselves. My transplant aftermath was the first time anyone else got involved in my personal care since my mum stopped having to do it when I was a child.
The second problem hits when I get home. When I was discharged after my transplant I had been in bed without moving for two weeks. Every transplant recipient has that problem for the first four or 5 days, even the non disabled people. Nobody can move very far when it feels like you have half a brick inside you and you are attached to a big bag of your own blood as it drains.
But if you have two weeks of that your muscles weaken. Your brain forgets things that were routine like how to transfer on to a piece of furniture. The combination of these things undermines your confidence until the formerly routine becomes terrifying. You have to really think about how to avoid a fall that could be damaging enough to land you back from whence you came.
Everything has to be relearned. Until you can do that you will be dealing with the fear of something going wrong. And the consequence might not just be frustration or embarrassment at getting it wrong. I had very real fears that I would fall while trying to do any type of transfer from my wheelchair. And that if I did fall I could do serious damage to the transplanted area. The wound was still visible and restrictive.
So you have to take things slowly. Allow yourself that vulnerability and know that it isn't your fault. It's more important to be safe and well than it is to get back to normality. At least for a time. I was off work for around three months. Some people will return to their daily lives quicker, others will take even longer. There's no right answers. No qualification standard.
This has really just been to help anyone who might be facing a similar situation and is a little bit in the dark about what to expect. It's stressful, frustrating, often painful and irritating. But it's also a miracle of science that should help you live a better quality of life.
So embrace it more than you fear it.
