Tuesday, 8 September 2015

The last few weeks....

I'm very aware I haven't updated in a while. This is due to focusing fully on work and real life other than my kidneys for a change.
These past few weeks, however, have been....challenging. A couple of weeks ago, I went in for my post transplant biopsy check (Ultrasounds and MRI can only tell you so much). And I've been dealing with that and the aftermath.

I was in the Personal Investigation Unit (PIU) at 8am on the Tuesday.
Registered to a bed, waited a couple of hours, the doc came in explained things, then prepared for the procedure.
Companions aren't allowed to stay during the procedure, so Tom left when the equipment was being prepared. Just as he did, tranquiliser was injected via cannula and worked pretty much immediately causing the ceiling before me began to spin and weave. Apparently he was about 5 feet away when he heard me go 'wheeee'.
The equipment was placed on my new kidney, two sharp clicks and I felt the needle go in twice (felt but no pain). Then the doctor applied a bandage, informed me he was tidying up, so I took the chance to turn over to my other side and fall asleep.

Did you know...
During a biopsy, they remove a selection of the filter cells which make up the kidney to ensure they're all in good health. If they have any left over after the analysis, they store them. These are then used to find the right kind of treatment if something happens to the patient without forcing them through more uncomfortable tests.

I woke up shortly after with Tom by my side, though I think they must have given me a lighter dose of tranquilliser as this time I didn't suffer the overwhelming need to go back to sleep.
As biopsies are pretty simple, you can usually go home straight after...once they've ensured the hole they've made in the kidney is fully healed. They check this by having you go to the loo until there's no more blood in the urine. During the first 2 biopsies (pre-transplant), I had to stay as my urine was constantly stained and it took a while for the kidney to re-heal. This time...no problem! I was out of hospital after the second loo visit to ensure the first wasn't just a fluke. Shows how messed up my original kidneys were.
I was informed, as I'd had all the tests done there, I wouldn't need to attend clinic until the next week as that'd give them time to check my samples. No problem.

The phone call
The next day I was absolutely fine, minus the slight ache in my side.
Then my phone goes off. I was to go back to clinic the following day as the consultant needed to speak to me. I explained the change in my clinic visits and she informed me that they still needed to see me asap so the following day.
Cue 24 hours of me fighting off stress and worry, including waking up to a none IBS belly ache at 4am whilst staying over at my parents.

Next day, mum takes me up to the clinic. Deal with the usual, blood pressure, blood tests yadda yadda...then I see the consultant. He takes a moment to read over my newest notes, then takes a sigh and sits back which gives me the signal he's ready to give some unwanted information and take on any questions I have. It's the body language of 'something big this way cometh'.

He informs I have BK Neuropathy.

BK Neuropathy comes from a virus which is dormant in a majority of people who can live their whole lives without knowing they have it within them. The most susceptible people are those on immuno-suppressant drugs - *waves* yo - as the virus will occasionally peak out, see where it can go, spot the immune system and slam the door back closed. Then the immune system is lowered through medication, the virus will peak out again, see it's all quiet, then sneak out for a happy little attack, mainly on the kidneys. Which is why...if not caught on time...can cause issues to the grafting of the new kidney into the system.
When you get BK Neuropathy, you don't know you have it. You only know via tests or when symptoms start to appear. And by then the virus is fully active and in action.
Thankfully, mine was caught in time.

So I was given the option of immediate treatment that day of an Intravenous Immunoglobulin (IVIG)

Here I'd like to say a huge, huge personal thank you to all those out there who give blood as the IVIG contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. You save lives....for some many people.

The IVIG reduces the immuno-suppressant enough for the immune system to groggily wake up, look around, witness the attack then go screaming forward to the rescue.
Well...I say given the option. Truth is when I asked the doctor if it could wait, he looked me in the eyes and said 'No. Not really. In fact, I would highly recommend taking the first treatment today'.

Where did I end up? In the same ward, and in fact the very same bed I'd had post transplant recovery! Cannula applied, drip turned on...prepare for a long day.
During the first treatment, the drip is set at a very slow rate the ensure the patient can handle it, then slowly increased every half an hour. Thankfully mum was there, so every time an alarm went off or the bottle emptied, she'd notify the nurse.
We were done by 6.30ish, delighted that I didn't have to stay over night.
Tom came by after work, mum took us back to hers, and that's when it hit me how tired I was. I'd been there for 6 solid hours, just sat in the bed, with no fresh air, pumped full of medicine. My head and body were in a slight state of wobbly. So Tom took me home.

Woke up on Saturday, and something felt off. I was fully expecting side effects, but I was shocked at how quickly everything escalated. I had a headache, I felt like I was fighting flu without the fever and I knew something was wrong (I'm not kidding here), when I couldn't even finish my bacon breakfast. My appetite was gone. And the headache got worse.
By mid afternoon, I was lying in our darkened bedroom, with Tom working on his laptop, keeping an eye on me.
My legs and arms ached feverishly, I was ridiculously warm but then too cold if cooled down and my head....I never want to experience that again.
I was dealing with the side effects like an initiation by fire, Tom cooling me down with a flannel and paracetamol my only friends.
At one point he called the hospital and they told him I should be fine as long as my temperature and blood pressure didnt peak to 38. He managed to keep me down to 37 pretty much the whole day.
At one point we considered going to hospital, but the idea of going downstairs to the car, let alone the drive and waiting in hospital made me want to die. So he nursed me best he could. Tried to stay hydrated but even that failed as after drinking water, it immediately came back up again.
Night was the worst as I had the pain somewhat in check when I was awake, but when I slept it would come back ten fold.

The next day, although I managed to make it down stairs, I was now dehydrated and malnourished (I couldn't manage water let alone food!).
However, I read up that salt and sugar were the key, so my slow release sodium tablets worked there, and I worked my way through glasses of squash based liquids. By the end of the day, the headache had dissipated and I was sitting up again.
I never want to relive that. Especially as I had an event I'd been looking forward to for a while literally just after my second treatment. So I did research. Into everyone and everything that had encountered IVIGs and, on doing some detective work, I confirmed how I could potentially avoid the next batch of hellish side effects. And here...I pass them onto you...

Preparing for IVIG treatment

  •  Hydrate - Drink at least 3 litres of water the day before. Then drink at least 2 litres throughout the process
  • Sugar water - Kidneys won't let me drink sports drinks. But, they are highly recommended post IVIG therefore, I drank very diluted squash. 
  • Speed of flow - I didn't let them push it past 200ml an hour. Last time they pushed it up to the point where I could feel pressure flowing through me and that made me a touch uncomfortable but thought that was the way it should be. This time, I asked them to slow it down and it seems to have worked a charm.
  • Painkillers - I'm banned from Ibuprofen (which is why I suffered the migraine) so I took paracetamol before the treatment, 4 hours later then again 4 hours later. This helps the body pre-empt any pain.
I'm not, however, going to lie...this was not a completely fool proof method as, although I awoke the next day feeling fine and even managed to get to the event feeling ok, the next day I got hit by a headache which gradually progressed, though not to migraine proportions. My legs ached all weekend but nothing compared to the last treatment. On the Saturday, I nearly didn't make it back to the field as my head was pounding. However, no way of sitting or lying down soothed the pain, so I decided to head out to the field for fresh air and surrounding distractions. Slowly but surely the pain finally abated. On the Sunday, I was forced to lie down in a friend's tent and managed a selection of naps which saw me back on track.
So suffered some pain and lack of focus, but was also able to run around here and there so the IVIG treatment preparation appears to have worked.
Still fending off some of the side effects today, but I just compare them to the first treatment and am suddenly grateful things could be (but arent) a lot...lot worse.