June 2013 - another trip to hospital

A very bad period of my recovery was on its way, and as it would turn out it would set me back weeks in my quest to get better.

One of the things you are told to look out for during your recovery is a leak of salty tasting fluid from your nose or down the back of your throat, it could be CSF (cranial-spinal fluid) from your brain leaking out of the operation site. If this happens it means another operation to go back in and seal the leak up. On Tuesday 18th June, I thought I had developed a CSF leak, as down my nose came this yellow liquid, and it kept on coming....and coming.

So we phoned the Wessex Neuro unit and were told to come in right away. The liquid was collected and sent away for testing. The consultant was hopeful that in fact this was not a CSF leak, in patients like myself I was tested during surgery for a leak and none was found. In cases where no leak is present during surgery it is highly unlikely that a CSF leak with happen, but if you have a CSF leak during the operation then it is more likely you can spring a leak again later. So although good news on that front, what was this yellow liquid coming out of my nose. As it turns out, it was the beginning of Sinusitis and indeed the beginning of quite a few infections that would run riot through my body, included Pharangitis and a hefty dose of sickness and diarrhoea. In fact it was the sickness that did for me, because I could not keep anything down and more specifically I could not keep my Hydrocortisone tablets down. These are my life blood, and without them I cannot fight infections, as the body would naturally inject large amounts of Cortisol into the bloodstream to fight such infections. Although I didn't know it, I was on a downwards spiral to hospital.

On June 22nd I was admitted to QA Hospital Portsmouth with Adrenal crisis, partial renal failure and in a "very poorly" state according to the hospital report. I really don't remember much about that day, when I ended up in the Medical Assessment Ward, on loads of IV drugs and catheterised because I was barely conscious. It took 3 days of two types of antibiotics (oh no, not them again!) and gallons of IV fluids to stabilise me. I got there in the end, but I was very weak and had no appetite. My mouth was so sore due to infections in the mouth and down my throat I could barely stand anything to eat, and wasn't sleeping at night because it was just too noisy....and I had the DI at this point too.

Then to add insult to injury I wake up one day to find my legs are tingling and are absolutely huge, I have fluid retention in my legs and feet, I look like I have elephants legs and it really scares me. But the doctors say not to worry, it is quite normal and once I get home and start moving about, the fluid will get moved out of my legs and back out of my body, it is a side effect of having so many IV fluids pumped into you and then not moving for 5 days.

I finally came out of the QA Hospital on the 27th June, much the worse for wear. I really didn't enjoy my stay at the QA, I felt it was nowhere near as well run as D-Neuro in Southampton and my state of heath was so poor, I don't think I had ever felt worse.

So I sat at home and cried, I was at my lowest ebb. Not so long ago I had walked 2 miles home and my recovery seemed on track, then in a whirlwind of illness everything seemed to turn on its head, how would I ever get better now? It is a question I am still asking today, but back then it was very dark. I spent day after day at home laying down, no appetite, still with giant legs and feet and barely any energy. 

After two weeks out of hospital, my fluid retention had indeed gone, but the tingly sensation in my bottom and foot and down one leg had not, and it was making getting about rather difficult. My appetite was beginning to return a bit now, but I've lost getting on for a stone in weight and if you know me, you'll know I didn't really have that much weight to lose. What I've lost is all muscle tone, getting around is hard, and I really need to start to build some muscle and stamina. God knows how, when it is 30 degrees outside. As I said, very dark days for me, but there has to be an end in sight, doesn't there?