I’ve dealt with a fair bit of health problems but being told I would need a transplant knocked me straight off my high heels.

Clutching my NHS number labels in one hand and handbag in the other I sat patiently waiting for my bloods to be taken so I could leave. My husband, a seasoned professional appointment chaperone, considerately offered conversation to take my mind off what has just been unveiled to me. Shock was how medical professionals would have described what I was going through, however I felt everything; I felt the blood rushing through my veins, the temperature rising.  Could I have heard right? Did the snotty Doctor just say that I was going to have someone else’s body parts placed inside me? This wasn’t in my plan, this wasn’t how my life was supposed to go. Tablets, injections? Yes. Open me up and insert new body parts? Erm…nope, not in my plan!

Even after 20yrs of diabetes I still didnt manage to look as the chatty phlebotomist drains me of three vials of my, ‘very low in haemoglobin blood’. In shock and anxious to get out of there I drifted through reception back to my car. My husband following me, sensitively (and wisely) reading my mood, choosing to leave me to open up when I was ready. Forcing the matter would have only ended badly for all involved. With the car door shut and as if by magic my emotions surfaced. ‘Cry me a river…’?!? There was definitely a teary river being cried in the car that morning!

Niave I am not, I had read up about Chronic Kidney Disease and I knew what treatments were available to me and, what the success rates were but nothing, and I mean nothing, not all the cups of tea in China could have prepared me for the emotions that were about to run through my body.

Returning to work that day I faced the world with my usual smile, smart dress and killer heels. Unbeknown to everyone else around me I was actually a shabby, trainer wearing mess inside.  Every loo break was actually to unleash the build up of tears, teas and coffees had extra splashes of saltwater in them and during the drive home I found myself sobbing uncontrolably like some traumatised toddler. Like a national tragedy this seemed serious but I couldn’t tell anyone. What do I say? What do I tell people? Should I even tell people? I had never been here before, I wasn’t in control and I didn’t like it.

Coming from a pretty straight talking family and the words ‘Man up’ and ‘Get a grip’ are often thrown around but this time it was too big. I wasn’t going to ‘man up’ and I couldn’t ‘get a grip’ I needed to let this out, I needed to grieve for the old me and work out what to do next. I won’t deny the next few months weren’t pretty. I can only imagine the number of  times my mascara has ended up ingrained on the shirt of my husband. To everyone else I was being strong, family and friends complimented me on my bravery; I am not brave, I have no choice. My body is broken and it needs fixing, full stop.

I spent the next few months researching ‘simultaneous kidney and pancreas transplants’ (SPK). Oh yes, I wouldn’t just be waiting for a kidney but a pancreas too. It’s amazing what you can find on the internet, uplifting tales of superhuman women who are able to swim around the world backwards after having everything replaced but their eyelashes to tragic long drawn out sufferings, failed transplants and stories of surgical disfigurements. The Internet was not the place I needed to go (and that’s my advice to anyone for most things unless you need ideas of what a certain piece of ikea furniture is meant to look like). I needed to speak to real people, transplantees, people with scars, people brave enough to go before me.

I had been in touch with the Predialysis Team who had been there for me right from the start. From when ‘they’ (the consultants) realised my kidneys weren’t going to recover. Oh yes, I haven’t mentioned this yet. After a slow decline in kidney functionality over many years (a common complication from diabetes) I had a bad reaction to codeine which dropped my functionality down to 10% (at 20-15% they start talking to you about dialysis) and they never fully recovered. I had weeks of praying for them to bounce back and they did a little, two months later they were back at 25%. It wasn’t long after that that they began to decline further.  Within 6 months I had gone from ‘keeping an eye on my functionality with intervention probable sometime in the next 5yrs’ to ‘can you start dialysis on Monday’. All this was a lot to take in and just when I thought no one else understood along came (I’m sure she won’t mind me mentioning her by name) Debbie, my Predialysis Nurse.

I was referred to Debbie as before transplant I would need dialysis. I knew this was inevitable and thought I was ok with the concept of having to clean my blood for a bit until my spare parts arrived. Being ‘ok’ with something in your head and being ‘ok’ with something when it’s fully naked, smack bam in front of you waiting for you to make a life changing decision is very different. Very different. Debbie became my go to help, my confidante. I would turn up for appointments in my work dress and suit jacket, my uniform to the world that I was OK. On one occasion she took us to the ward to see someone on Haemodialysis. A lovely lady eating cake whilst one arm attached to a machine that seemed to be drinking her blood. We sat back in the room and asked if I was ok and had I any questions. I didn’t and of course I was ok. This was the hospital, this wasn’t my husband asking. This was the place I was meant to be strong, brave even, just accept anything ‘they’ told me,  And there it was, that moment. I looked at Debbie and I started to cry (don’t worry the tears don’t last forever). ‘Phew’ she said. ‘You are human’. It was then I realised what I’m going through isn’t normal. I shouldn’t be faced with a decision this big at my age, it is a scary thing, I shouldn’t know how to behave and yes, too bloody right it’s ok to cry!

Debbie put me in touch with a Facebook group that was set up by a lovely lady who wore her scar proudly. Along with Debbie, finding this group changed my life. It enabled me to cope. People of this group either we’re going through the same thing as I or had already been there and was wearing the SPK transplant t-shirt. For those first few months that Group became the place to ask questions, seek advice from real people.

I’m now a year down the line I can sit back and chuckle at the times I completely freaked out. My views now are very different; I now can’t wait for that magical call. In fact I would go so far as to say that I’m longing for it, desperate to be opened up and my plumbing attached to something that works. The fear of surgery, the fact the organs won’t last forever, the worry of rejection is in the past. I’ve stopped beating myself up for having a broken body and I now talk to anyone that is interested. The next step in my journey is going to be the biggest but the best by far. Let’s hope I don’t have to wait too long.