Archives For September 2013

The 28th & 29th.

September 30, 2013 — Leave a comment

The 28th of September.
Today I have been much more with it. I’ve had to be reminded of what day it is, but generally much better than yesterday.
I slept relatively well, I think, on the remains of the Zopiclone and Lorazepam. My Mama came in at about eleven after a really long queue at Costa, and we talked a bit about the past couple of days so she could fill in the gaps.
I made three attempts at eating a banana but it just really hurt, then we saw Dr. Ferguson and he said not to worry about it, that I’ve got a particularly nasty bug and he expected me to feel dreadful and have no appetite so my feelings were validated by that. He said I should feel much better tomorrow so I’m hoping he’s right about that too.
This afternoon, we listened to Radio 4 and read our respective newspapers. We he arrived, Daddy brought me a hot chocolate but that was too painful to drink, but I was fine with coffee earlier and some juicy water, so I have no logical theory about that. Another illogical thing happening is that my skin GvH seems to be flaring up so that’s useful.
Tonight I have been being stressed about my skin and my cannula’s given up so now I have to stay awake until someone can come and do another one and I can have my antibiotic and go to sleep.

The 29th of September.
Oh God, last night was dreadful. My cannula decided to blow just in time for my final antibiotic of the day, then I had to wait for someone to come and find somewhere to put in a new one. It was the girl who’s been stabbing me all week, but after a few goes, she had to go and get the reg who was on. He managed to get one in the underside of my wrist, which made sleeping interesting.
That cannula blew this morning – I was urgently calling them back in to get it out because I could just feel that it hurt and was wrong. So then I spent the rest of the morning free of lines, watching Andrew Marr and Sunday Brunch. Dr. Ferguson came in about eleven? We had a chat about some confusion over my drugs, and he was sorry about my arms. There are weird things going on with steroids/tac. I now don’t think that my GvH is flaring – last night my skin was just angry.
When my Mama came, I had a little cry at her, then we talked to the hot reg who confirmed stuff about steroids – 10mg/day, tac paused. Not for long though. He said “you’re a bit down aren’t you” and I was like “well how would you feel in my position?!” Gah.
This afternoon I’ve just slept – I only woke up for tablets. I decided to stay awake after six because Daddy was here and I wanted to be able to fall asleep tonight.
I ate better today – a chocolate chip brioche, a packet and a half of crisps, three quarters of a cookie, some chocolate frog faces and a few Gaviscon.
Tonight is X Factor and lots of rest. I don’t know what will be happening in the morning so I might organise my tablets tonight.

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The 26th & 27th.

September 28, 2013 — Leave a comment

Very very hazy. I apparently didn’t sleep well. I know I had a visit from Sophie McCance-Davis who brought me many tasty goodies bless her. I have known her since we were both wee bairns in Brownies and I love her a lot. Jane, the lovely nurse from Wednesday came by too.

Friday was bad. I was given some sort of sleep drug at about three am, so when staff started doing all their normal business I was not ready.
A transplant co-ordinator came to see me and my mum, but I have no recollection of her or anything she said. She brought us a book and we’ll have a meeting next week when I’m actually compos mentis.
The PCA got taken down at some point because my pain was under control, so now I can have IV tramadol if I need it. I think I spent the rest of the day falling asleep mid-sentence and trying to watch TV/listen to Radio 4.

I feel like I will never leave hospital.

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I was supposed to meet my lovely TwitterMum Heidi Stephens for lunch at Café Rouge with my mum, then go back to Bad Apple at 15:15 to get my hair dyed. That was the plan. Here is what actually happened:

I woke up with a pain in my liver that I recognised but was tolerable. I texted my mum to request she bring tramadol upstairs to try and ease it but it didn’t work. Somehow, I managed to force myself to get dressed and made up because in my head we were still going to lunch and Bad Apple. I had a crumpet and some juice to see if my body needed food, but that made no difference. I ended up ringing Bad Apple and explaining my pathetic circumstances to them and how I needed to cancel my appointment, and Heidi was very amenable to driving to our house instead of The Mailbox.

She brought me a wonderful box of delights – deliciously squishy-looking brownies (I haven’t been able to eat one yet but my parents say they’re scrummy), nail varnishes, bath goodies (for when I finally get to have mine) and some cute notebooks. Plus her boyfriend fashioned a label with wood and twine which was very impressive! So we had tea and talked, and my mum made omelettes. We talked about Twitter and liveblogging and hospitals, along with Bake Off etc. I was terrible company – for the majority of our time together, I was bent double with a blanket over me. By about a quarter to two, the pain was becoming unbearable, so Heidi took her leave, and my mum rang Jane who is one the specialist adolescent transition nurses for the liver team. By some strike of pure good luck, my bed on ward 726 was still available, so my mum threw overnight stuff in a bag and we came in. I spent the following five hours howling in agony while various nurses looked at me and bleeped doctors. They gave me a single tramadol, two paracetamol and 10mls of oramorph, none of which even touched the sides (as I expected). When the doctors finally came in I said “And where the bloody hell have you been?”, and I don’t know what they said in response. The reg came up to my end of the bed and just said “Hi” which I was thrown by as you’d think he would’ve had some concern about the way I was jerking around and softly screaming but apparently not. He asked how I was and I said “it’s just like the pain when I had stones before and all that worked then was IV fentanyl”. He then said “have you had this pain before?” to which I replied “YES OH MY GOD WERE YOU NOT LISTENING TO WHAT I JUST SAID” then they all scuttled away, muttering something about getting a senior doctor. I was then left in further torment while the doctors had to deal with an emergency, which my logical brain understood but my instinctive brain did not. Another doctor did appear in the end – Ella, who is sensible and knows me so we trust and like her. I went to a serene sort of place while I lay flat to let her examine and cannulate me. Then when she was gone I was back to rocking back and forth and whimpering while we waiting for the fentanyl that was promised. After an hour or so, I sent my mum out to find out what was going on and it turned out that they’re not allowed to give fentanyl on the ward as it’s not safe and doesn’t last long enough to have any real impact. Then a pain nurse came along and she was able to sort me out a shot of morphine, then a PCA of morphine was organised so I could give myself a bolus when I felt the need.

I don’t remember much more of Wednesday – I was pretty doped up. I know it took me an hour and a half to write a barely coherent account of it in my diary. I think some zopiclone and lorazepam may have been involved in aiding my sleep. Thursday and Friday are an interesting blur that require a separate entry.

Things got better.

September 24, 2013 — Leave a comment

Last night, things improved vastly. When my dad and I arrived at hospital for my meropenem, we got the news that it was to be my last dose! I’d been on it for two weeks and the microbiologist decided it doesn’t need to go on any longer. The sepsis will probably come back, but there is nothing they can do to prevent it, so if I spike again we just go to A&E. Looking forward to that.

We needed to go back today for spirometry tests and another group and save, so we did that this morning. Now I’m free. At least until next Wednesday when we go and meet the transplant co-ordinator, anaesthetist and surgeon. I hope it’s Paolo or Darius. I don’t want some random surgeon I don’t know poking around inside me.

On the way home, I got my fringe trimmed at Bad Apple and this afternoon I have been incredibly lazy and it has been bliss.

This morning I spent five hours waiting for one syringe of antibiotic.
We arrived at the QE this morning at 8am, as we have done every other day. My bed had been given away by the night staff because someone from ITU needed it, so we sat in the waiting room. I sat there for an hour, then I went to find out what was happening with my meropenem, to discover that the doctors didn’t want anything doing until they’d seen me and talked to me about all the blood they wanted to take from me.
The doctors finally appeared some time after half ten, but they were really rather unhelpful. The reg had no idea of what the plan for me was going to be, but knew I needed the drug so requested that one of the juniors cannulate me to get the blood then I could have it. She sorted out a tray and got stabby; it did not go smoothly. The first vein she tried blew (never a comforting thing to hear), the second one buried itself away, but the third was happy to bleed. Only too well! She took enough to fill sixteen bottles, and considering I weigh just seven and a half stone at the moment and had eaten only a crumpet, I felt quite woozy. I requested some biscuits, but before they could materialise, I was whisked away for an echo.
I lay still obediently, concentrating all my efforts into staying awake as things were pretty blurry and I didn’t fancy passing out half naked covered in ultrasound gel. I managed to stay conscious, got dressed again and got taken back to 726, where I reminded the nurses of my presence and the need for drugs.
By half past twelve, I was beginning to lose my grip and started crying. I don’t really cry if I can help it because I do not see the point, but I couldn’t keep them in. At this point, my mum got rather angry and went to yell at people.
Then Dr. Sephie and Nurse Sophie came in and asked if I was okay, at which point I burst into tears and said “No because I still haven’t had my meropenem and I’ve been stabbed three times and I feel weird and I don’t know what’s going on…” which made them both feel bad. They apologised a lot and we talked and now there is a plan: a PICC line is going to be urgently requested, the only other test left for pre-transplant assessment is spirometry, and they would do the mero, I’d come back for another dose at four, then have the last one at eight, and tomorrow we’ll go back for ten instead of eight. I feel better.

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They took a ridiculous amount of blood.

So I need a new liver. Again.

September 22, 2013 — 5 Comments

I’ve decided I’m going to blog the journey this time. Last time I was told I needed a new liver (not a sentence I thought I’d ever say), I was already seriously ill, completely out of it on ketamine and morphine, so didn’t have the capacity to document any if it.

Here is what’s going on:

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In 2011, I had biliary stones twice (basically the same as gallstones but made of bile) because my bile duct wasn’t draining properly, meaning a build up of bile which turned into stones. The doctors decided that to stop this from happening again, they would do a roux-en-y operation, meaning they’d make me a new bile duct from some bowel and then everything would drain and work nicely. That was done in February 2012.

This year, particularly in the past couple of months, I’ve had a lot of hospital admissions, most recently on September 8th. I was spiking temperatures and throwing up, and on the Monday, Charlie Craddock (haematology consultant) decided that all these infections were probably related to something dodgy going on in my liver, and got that team involved. I carried on getting temperatures for about a week while the microbiologists grew bugs from me and determined the correct antibiotics to treat them.

By the 18th, I was ready to physically hurt someone. I was feeling fine, but people were constantly waking me up to stab me in the hand incompetently and give me enormous bruises, and my veins were a total mess. I’d had a terrible night, so I spent the day convincing doctors and nurses that it was imperative that I go home, and they agreed that I could, provided I go back three times a day for antibiotics, and on Friday morning we’d have a meeting with James Ferguson, my liver consultant, about what the grand plan would be.

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My sad veins.


So on Friday morning, my parents and I went to the QE for my last dose on vancomycin and to find out what was going to happen. And here it is: the tube that the surgeons reconstructed last year is now malfunctioning in a different place. The tube they did is fine, but it branches off in two different directions and only one side is functioning properly and letting the bile drain freely. However, on the other side, the tubes are blocking and causing “stagnant pools” of bile to form, so bugs start to grow. And they’re weird bugs that are resistant to usual antibiotics so I have to keep having the antibiotics until they eventually die. Then they think I’ll grow more. This is going to keep happening and continue to get worse, until the tubes block completely which is when I’ll be in real trouble again. And the only way to fix me is to do another liver transplant. So this week the doctors will do a bunch of tests and have lots of chats, and they’ll put me on the list.
At the moment we’re driving back and forth to the QE three times a day for meropenem to treat my current bug, and I’m trying really hard to eat more because I’ve already dropped down to 7 1/2 stone and I really can’t afford to lose any more. I’m going to get back to the gym to try and build up my muscles again too, as I need to be as strong as possible when the transplant happens. Last time my recovery was incredibly slow because I was so weak, and I don’t want to go through that again.

So I will write each day as it happens, and hopefully I’ll have a decent record when this is over. I’m not going to let this destroy me.

If you want to help, sign up to be an organ donor, and tell your friends to. Don’t offer me your liver; I need a whole one so a living donor isn’t an option. I do like presents though.

I’m not going to be the one in three that dies still waiting.