What a week...

Hello again all....

Monday was an ok day.  I went to work as usual, came home and was up at MRI for 5.15pm for my 5.45pm appointment for a CT Scan.  This had been requested by Mr Tavakoli (transplant surgeon) and Dr Bubtana (Dialysis consultant) and was a scan of my iliac vessels and was the last test to get me activated on the transplant list, so an important test.  When it came to getting a venflon in my arm for the contrast to be injected, it took 2 attempts and a smug doctor to get it in, and much bruising ensued.  But the scan went ahead, 15 minutes of lying flat on my back with my arms above my head been moved in and out of the doughnut shaped scanner.  I slight problem with profusely bleeding all over the changing room happened but I got it cleaned up and went home.
Around 10pm that night I started to become really itchy all over my chest, neck and lower half of my face which went on until I fell asleep a couple of hours later.

The following morning it was evident that something was wrong, I looked like a frigging beetroot and the itching - aaarrgggghhhhh.  Anyway I went to work, trying not to look at people so hopefully they wouldn't notice the beetroot.  Then off to dialysis.  They were quite concerned and got the Nurse Practioner to come and see me.  She said she thought it was a reaction to the contrast I'd had injected.
I was feeling pretty sorry for myself at this point, when I was told I was moving up to yellow needles which were bigger, that didn't help my fastly plummeting mood AT ALL.

Needless (ha ha) to say the first needle went in ok, my arterial button hole seems to work no problem.  The second one however didn't, and this was trying it in the button hole they'd started creating on Saturday by putting the plastic biohole in it which had been uncomfortably sitting in my arm for 3 days.  I was told this never failed; always worked but mine didn't.  What it did do was cause a whole load more bruising and swelling.  I started crying because the pain was excruciating.  Sometimes I get so down with it all that stopping dialysis seems the only solution.  I realise that stopping means dying slowly but the pain from the needles, the numerous attemps at needling at EVERY session is so soul-destroying and frustrating.  Eventually as a last resort they went in the site lower down my arm under the arterial site which is only about 1 1/2 cm from the successful site which is too close, but it works so use it.

Once I'd calmed down and dialysis was well under way I then had to get hold of Hari to get him to get me some Piriton tablets before he went off to yoga for the itchy redness and now a rash on both arms.  I got home and had the antihystermines and then chilled.

Wednesday I went to work as per still red & puffy but started to feel poorly pretty quickly so I rang the dialysis nurses and after hearing my symptoms Diane insisted I went to A&E.  I protested but still she insisted.  So once Hari was home from work off we went.  It was packed :(   First we saw a triage nurse who assessed me, then I had blood taken and then I saw a registrar who after checking with a renal doctor gave me 8 x 30mg steroid tablets and 6 more for tomorrow and instructions to rest, then we went home.  An hour later I felt exceptionally sleepy but less red & less itchy.

This morning I woke up feeling great, not red, not itching.  Great.  An hour later the itching, & especially the redness was back, I had a bath which probably didn't help cos the heat only exacerbates it all.  Diane, my favourite dialysis nurse then rang me to see how I was and to say they had a bed if I wanted to go in early.

I got there about 12.30 and they'd done my machine & set the table up so I had to do nothing but my obs and wash my arm, which I duly did.  A needle went in a treat with not much pain.  B needle however proved as much of a twat as always and wouldn't go in so a 2nd site was chosen, right up by the crook of my elbow so I was given strict instructions to not move!  Half an hour into dialysis as I was chilling & getting nicely comfy sudden pain started above the V needle and the level readings on the machine shot up.  Melissa came running (literally) as she'd seen the panic on my face and confirmed it had blown.  FFS...

Everything was stopped.  Diane tried getting a needle into the hole used 3 times so far below the A (meaning if it was successful then the A & V connections would have to be changed) but it didn't work.  Needling a new place was ruled out as I was bruised and sore and plasters were now covering most of my arm!   Melissa went and got a machine from the other ward to do one needle dialysis, which I hadn't experienced so far.  It needed lining & priming so I just lay there while Melissa sorted the machine, Diane kept a finger firmly on my bleeding arm and Gill kept us amused with stories of being a student nurse.

I was put on the machine and everything started swimmingly.  I got half an hour before I started to cough and feel a bit rough.  Gill came and did my blood pressure which was fine so off she went again.  No sooner had she disappeared I started having chest pains and finding it difficult to breathe, so I reluctantly pressed my buzzer and Diane appeared.  Within a minute I was laid flatter, the machine was stopped and I was on oxygen.  It was quite scary.  She did my blood pressure again and it had plummeted.  I was taken off dialysis and my needle was removed.  I felt really poorly, my breathing was properly laboured and I felt hot but was shivering.  Diane said she thought I'd had another reaction to the one needle dialysis as it takes your blood out, cleans it and put its back and repeats the process over and over where as 2 needle dialysis is a constant cycle of removing & cleaning all happening at once.

It took a good half an hour to feel right but then I felt incredibly tired, finding it hard to hold my eyelids up.  Diane wouldn't let me leave the ward til she was happy I was fit to drive, and she went and made me a cuppa, bless her.  She also instructed me to stay off work tomorrow again, as I need rest.  I hate missing work.  After she was happy with my BP and that I was safe to drive home I was sent packing.

What a bloody week. 2 reactions to 2 different processess which are meant to help me!   The needles are more than enough of a bloody challenge I could well do without my daft body reacting to helpful things.  I better bloody get activated on that transplant list after all this.

Sitting here typing this, I have no itching, no redness and no shortness of breathe but I do have a tiny cough still but thats probably the oxygen.  I am slightly worried that by 3.30pm tomorrow (the time I took the first steroid dose yesterday) things might go tits up again but I have again been given strict instructions that if they do indeed go tits up I am to head straight back to A&E.  Fingers crossed everything is ok tomorrow.

What a week.  Thats quite a bit of scary shit when its happening to you.  I hope it never happens to any of you.  Stay safe blog readers, limit you salt intake and look after your KIDNEYS!!

To end of a good note though, the results of the bloods I had taken at A&E yesterday were posted on Patient RenalView and my eGFR has gone up from 9% to 14% so I guess dialysis is working..... as horrible as it is.