A Vasculitis story

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My story began in the 5th February 2015.

I was getting my grandson ready for school when I realised I had a hand full of sticky blood. I couldn't remember coughing or sneezing or even clearing my throat but obviously I had as there was no other explanation.

Funnily enough I had only 5 minutes before made an appointment to see my GP later that day to discuss some pain and swelling in my hands, I had also developed a strange sore on the palm of my left hand which resembled a small cold sore. I also intended to discuss the unbelievable fatigue I was experiencing lately.

As a previously heavy smoker my instinct told me I must have Lung Cancer, in the hours that followed I had pretty much planned my funeral and even thought about my own eulogy. 

At 5.10 that afternoon I was sat in my doctors office looking at his grim face as he made the urgent referral for a CT scan. 

The next couple of days passed in a blur really, but quickly nonetheless. I had my scan on the following Monday, saw a lung specialist on Tuesday, spoke on the phone to 2 more specialists on Wednesday and Thursday before going back to the hospital on Friday.

It was at this appointment I was diagnosed with Microscopic Polyangitiis, it had attacked my lungs and kidneys. Within 2 hours I was attached to a drip of steroids and told about the chemotherapy regime I would be facing.

The chemo infusions started the following Tuesday and I received an appointment for the Renal clinic at Salford Royal a week after that.

It was that appointment that was the real game changer for me. Until this point it hadn't really sunk in how Ill I actually was. Despite hearing terminology I didn't understand anyway and the word incurable, I remained focused on the word I hadn't heard which was Cancer. I think I was so overwhelmed that it wasn't what I thought, I completely overlooked the fact that I had something which was just as life changing - Vasculitis!

The appointment lasted approx 5 hours, I had blood and urine tests, a scan and then sat waiting for the consultant to tell me his opinion. He told me I was being admitted.

I think the enormity of my situation hit me at 8pm that night when I was shown into my own room with these two huge machines, it was a great room though, like a premier Inn but with scary machines!

The consultant came to see me the following morning and explained my lungs were filling blood and my kidneys were failing. He then went on to say how amazing it was that I walked into clinic, especially considering my blood results were normally found Post Mortem....

That day I had a Femoral line put in so they could start Plasma Exchange. This was to be temporary until they put a chest line in which was a few days later.

The plasma exchange was usually done every other day but not always. I stayed in 3 weeks and only once I felt better did I realise how poorly I'd felt beforehand.

Anyhow once home the Cyclophos continued as did the new regime of a pharmacy full of new tablets I was to take every day.

Fast forward to August 2016 and I'm tapered to 7.5mg of predicted and the chemo still but I am managing to work full time.

Yes I get tired, very tired but I manage. My thyroid doesn't work too good, my cholesterol is through the roof, I have gastric and peptic ulcers and I've developed fibromyalgia and neuropathy but I manage the pain quite well with Gabapentin.

I don't know what my future holds or how long I can continue working full time but I'll try for as long as I can.

If anyone wants to share stories with me please feel free. There's not many of us special ones about so we should look after each other.

Take care