This is what happened…

Last Monday morning I woke up at about seven went for a wee, got back in bed, got up roughly 45 minutes later with a midriff region pain. I didn’t really see B as he was going to bed but fortunately a friend had said she’d take me to the Royal as when I’d had platelets and a bag of Hartman’s Solution (to help flush the kidneys) the previous Thursday one of the nurses had asked about blood and when I said I felt okay said I should come back in on Monday if I felt blah. Needless to say this was fortunate because if I hadn’t intended on going I’m not too sure if I’d have phoned up about the pain or just got down on the settee and see how it went. Although it was PAINFUL. Oh, and on the chest x-ray on Thursday a thickening had shown up on my fifth left rear rib – a plasmacytoma so I was going to be referred to an oncologist regarding radiotherapy. When I asked it was visible in the last x-rays but not unless you looked for it specifically but not it was showing slightly more. When I didn’t even raise an eyebrow let alone protest at the prospect of being admitted, the registrar said I must not be feeling well. And so by teatime, and after a copious amount of blood tests (including an arterial one), an ECG, vomiting and oramorph, it was unclear if I had pancreatitis, a clot or if it was muscular. What was clear was that my kidney function was going downhill, my potassium and calcium were high and I’d probably need dialysis. I couldn’t have the usual CT scan to rule out a clot because of the contrast dye’s affects on the kidneys. Then the renal doctors wanted a catheter fitted so a close eye could be kept on fluid ins and outs. I did protest about this, even offering to wee into a jug like during my stem cell transplant but it was a non starter. And by the time I had a cannula in each hand with saline in one and Bicarbonate of Soda in the other using the loo would have been a tad difficult. Two renal docs came to visit and said they would provide dialysis over the acute period but not long term. It was only when they changed their mind about an hour later that the implications of the initial decision dawned. Then I had a kidney scan which showed that there was no blockage of the tubes, just some fluid around the left kidney. I initially thought this meant I didn’t need dialysis but I’d misheard and this meant I wouldn’t need anything poking directly into a kidney. My potassium and calcium were both high. The registrar had left specific notes on my file as to what should happen if I ended up in ICU as they didn’t want an individual making a decision in the middle of the night. You know I cannot remember how I got to my room, by bed or chair, but I got there and left it again at midnight to have a femoral line fitted – I’d had a bag of platelets earlier and apparently it’s easier to apply pressure here if anything kicks off than at the neck. So about two in the morning I was having two hours of dialysis and got back to my room about 4.30am and having travelled by bed the extent of getting ready for bed entailed wiggling my bra off and leaving it dangling from the IV line. Tuesday morning a pancreatic surgeon called by about six, I think, and had a poke and a prod but fortunately my midriff wasn’t as sore as it had been but I couldn’t eat anything until Thursday. Then another renal doc called by. A doctor and nurse from Critical Care. The doc said I looked quite good to which I said that a doc yesterday had said I didn’t look like the numbers said I should, to which the nurse said that was because I was an individual and not a number. They also said I would do best to avoid them – they were actually lovely. Later Tuesday morning I had a radioactive photo to rule out a clot. And our consultant asked what time he could call by and see both of us! Gulp! So later in the afternoon we got to make a decision – well I say we I just made it and B happened to agree. I was remarkably stable all things considered. But basically there were two ways forward – now bear in mind our consultant is extremely compassionate and wasn’t as blunt as I am – made noticeable by a friend welling up when she visited on Thursday and I was telling her. My paraprotein although having dropped initially had risen again and he felt that the Revlimid wouldn’t be able to catch up with it. (We’d had a conversation earlier and I’d said that I felt that the two and a half week gap needed because of blood counts had let it start up again just down to little things I’d noticed.) Okay so we’ll go through the downside first – they could treat the symptoms and basically make me comfortable. Or we could look at trying an older type of therapy for which he couldn’t provide figures ie, 100 patients were given it and so many got this response. Obviously I took option two. Wednesday and Thursday are really a blur of sleeping and IVs of antibiotics, platelets, Vit K to aid clotting, ECGs, dialysis on Tuesday and Wednesday night, blood, the catheter coming out, the renal dietician, fluid restrictions, cannuals, ultrasound of my pancreas and the odd bit of puking. Friday I had a bone marrow biopsy which wasn’t too much trouble at all, the femoral line came out and a new tunnelled line for dialysis only went into my neck. It was the same renal doctor that had put in the femoral line who was very nice and this was confirmed by the sister who assisted him. Mind you she also said I was a star patient and brave as my heart rate and blood pressure remained the same throughout the whole procedure. I put it down to the yoga breathing and the doc said he had been prepared to accept the credit. I did say that confidence in the doctor played a bit part and that B had said, after meeting him briefly that he couldn’t imagine him in a flap. The sister confirmed that in the years she’d worked with him she’d not seen him flap. She also said I could call in anytime to say hello, for a cup of tea or a chat which I thought was nice. Friday night the exit point for the neck line starting leaking blood through the pressure bandage and we started with the gauze wars, then the renal nurses had to delve in to get the line clamps out for dialysis. By Saturday night I was thinking of selling tickets to see my right boob – it’s never had so many sightseers. Mind you at one point with all the gauze it looked like I’d had a lob-sided boob job that could have given Pamela Anderson a run for her money. I had more platelets and the dressing applied about 2 am on Sunday stayed pretty tidy until it came off yesterday and then during dialysis the nurse cleaned it down and for the first time I saw what the line actually looked like and fortunately it’s settled down. Yesterday I had an MRI of my liver (and had a discussion on the non use of gadolinium) and a CT scan of my pancreas. Both were fine. If I did have pancreatitis last week I don’t have it now. Although I did get to sign up and give samples for a pancreatitis research programme and today I registered for an ‘Individual susceptibility to Clostridium difficile toxin disease’ study – which didn’t show up in the sample of my possible antibiotic caused diarrhoea – and which is good because it can be nasty but if I haven’t got it now it’s unlikely I will get it. I asked if I signed up for three did I get a prize. The renal doctor came to see me today and from their view they are happy to now treat me on an outpatient basis once I am discharged. The limited fluid intake of 750 ml per day, as I’m not really weeing much, has been a real bind as I am used to drinking three litres but I seem to be getting use to it and think that at home it will involve a lot of flavoured ice cubes. There’s also the change to a renal diet which limits fruit and veg but apparently one takeaway a week will be allowed so B was happy with that. At the moment I can eat what I want as I’m not really eating anything so something is better than nothing and they can monitor me. I also got a rash that I initially thought was some sort of bites – we don’t know what this is but it seems to be past it’s worse because it was really sore yesterday to press against or walk but it a lot better today. From the myeloma treatment viewpoint, the Prof was off last week so our consultant discussed it with a doctor at the nearby Christies Hospital, and its likely unfortunately to include Dexamethasone, which we know doesn’t agree with me, but they have taken advice from a psychiatrist, the dose will be very low and I’ll be monitored. This therapy is also more damaging to the kidneys but since I’m know on dialysis this isn’t the big consideration it would have been. So we’re currently waiting on the results of the bone marrow aspirate before anything is confirmed. It is hard to get the newer drugs from the drug companies on compassionate grounds anymore and it’s nay on impossible to get onto clinical trials once they have started even without my current status. Sorry that went on a bit and I’m sure I probably missed things out! Today is the first day I’ve felt anything like. I showered myself – I’m not supposed to for a week because of the line but I was very careful and B had hosed me down on Sunday – I did a little bit of embroidering, I ate a little something, I stayed awake for my visitors, in fact I haven’t had a nap at all and of course I blogged.