Hiya!
First, let me apologise for not having posted anything for aaaaages. Anyone who has PSC or a liver issue might be aware of just how lethargic one can get, and I was pretty lethargic even before I had liver issues! So sorry about that.
Second, I have news! Many newses! Since the last post, I’ve had two liver transplants, and all sorts of complications. Way too much to put into one post, so I’m going to write my experiences up in a text editor and then post them one by one.
Blog soon!
It didn’t take long to be hospitalized again. I never felt quite right after the stent was put in, and just over a week later, I was back in Stepping Hill with a stupidly high fever.
The infection had got past my antibiotics by being a type that they had no effect on. No-one seemed quite sure what had caused the infection this time around, so after a week at Stepping Hill, I was sent to St James Hopsital for another ERCP to see if it was due to the stent slipping, or something like that.
The answer was no, it wasn’t a slipped stent. So, it could’ve been caused by the first ERCP, or possibly it was just a PSC-based blockage with no actual gall stones involved. No-one was quite sure, but by the time I’d got to Leeds, the IV antibiotics had worked their magic on the infection, and I was starting to feel okay again. It had certainly confused the doctors at Stepping Hill, because the fever was only showing itself at night. I suspect this might be a way of telling the difference between a gall stone infection and a cholangitis infection (at least in my case) – gall stone fevers go on all day, but cholangitis fevers only start getting bad after 4pm, and vanish completely in the morning. I don’t know why this might be, but it’s certainly been the pattern.
I stayed another week at Leeds, for a few more tests and to see if a different antibiotic worked. I’m now on alternating antibiotics – Amoxicillin and Ciprofloxacin. I alternate monthly, to try and reduce the chance of developing an immunity to them.
I don’t recall what date I got out of hospital, but I know when I returned – 31st March 2015. This time it was under much nicer conditions – it was just a scheduled clinic appointment to check up on my wellbeing and get a revised blood test. I have one appointment a month, to keep an eye on my liver and make sure it’s not getting too out of shape.
The reason I remembered the 31st is because the very next day, on April 1st, I got a call from Leeds. At 03:30AM. About a potentially suitable liver being available. aaaargh!!!
Naturally, our plan to get to hospital went totally wrong. We didn’t actually do too badly getting ourselves packed, and getting my son to his grandparents, but because I’m forbidden by the doctors to drive to a transplant, the transplant coordinator arranged for transport for us. As the donor was on life support, there was more flexibility about when to get there, so she wasn’t phased by the ‘might take up to 4 hours’ estimate by the ambulance service. So we waited. For the full 4 hours! Just as I was phoning the hospital to say they haven’t turned up, they turned up. It’s like they waited for exactly 4 hours before coming to collect us!
When we got to Leeds, we were told that there might be a problem. The donors relatives had vitoed the donorship minutes before we’d arrived, so it looked like it was a wasted journey. As the transplant coordinator told us this, he was bleeped.. the relatives were indecisive, and were debating it, so it might still be on! Half an hour later, and no.. they stuck to the vito, and we went home with the ambulance crew who’d brought us there. hmph!
It was back to normal life after that. My jaundice came and went a few times, and I got liver pains and nausea from time to time, but no fevers. The antibiotics combined with the stent seemed to be doing a good job! It took a while to get my weight back, as my appetite never really returned. I’m even pondering getting back into cycling, as I really miss it – especially now that the weather’s improving a bit!
So, when I got another ‘potential transplant’ phonecall two days ago, a part of me was actually slightly sad at the prospect of being hospitalized and having to take it easy for months. Seems silly, really, but I haven’t felt normal all year, and the first time I start feeling a bit like my old self, it almost gets taken away again. I say almost, because this one was a false alarm, too. We got to hospital in 2 hours, which is pretty good considering I was at work in central Manchester when I got the call, but we then had to wait 9 hours to find out if the liver was split or not. In this case, it was split, and two children got their livers fixed. It’s hard to be grumpy about that! 🙂 ooh, and I also found out my bilirubin levels. Just before the call, I’d gone REALLY jaundiced, and was still pretty yellow when I got to the hospital. The normal level is between 0 and 0.3 mg/dL, and mine was 1.7 mg/dL!
Apparently I’m now pretty much at the top of the Blood Type A list, so I’d better get out on a bike sharpish – the next call could come any time soon!!! 😮
(‘floppy bits’ meaning the liver!)
Well, it’s been an eventful start to 2015..
In January, I had an appointment at Stepping Hill for a gastroscopy to check for oesophageal varices; new veins created by portal hypertension to relieve blood pressure, which have foolishly attempted to go via the oesophagus. They’re exposed, and a bleed risk, so the doctors wanted them dealt with. They also prescribed me with beta blockers, to try and keep my blood pressure low and lessen the impact of the portal hypertension. I argued that my blood pressure was already pretty low, but they wanted to try anyway. The only other ‘cure’ is to transplant the liver.
The doctors found some varices, and so they booked me in for another gastroscopy to have them banded. They plonk an elastic band over them so that they die and drop off. They banded 5 of them, and I was booked in for another gastroscopy to check if the banding had worked, and if any more needed banding. No more banding was required. 🙂
So far, so good!
Then on January 27th, I woke up sweating, but unable to stop shivering. My brain was also not working too well, and I was pretty incoherent. I had a bloomin fever!
I managed to drag myself out of bed and into some clothes by midday, and my father in law came by to drive me to A&E. I only live 5 minutes walk from the hospital, but it may as well have been 25 miles away – I could barely walk. I got to the reception and made my usual excuses.. fever, PSC, been told to get blood test whenever it happens.. When the nurse came to determine triage, she sent me straight through, where they got me on a bed and into resusc. My temperature was something like 38.6! They got a cannula in, and added saline, paracetamol, and an antibiotic. I think I must’ve been in there for about half an hour before my fever started fading. It’s hard to say.
After that, the hospital stay was much like before. Scans and tests showed that I had something stuck in the end of my main bile duct, but it looked tube-like, and my duct hadn’t dilated like it should do. People again wondered if I had a stent in place or not. Eventually, an MRI scan proved that I didn’t, and that it was just gall stones, and that my bile duct hadn’t dilated because it was actually strictured from the PSC.
At this point, I was feeling quite well. My temperature had been stable for a week, and I was eating and drinking normally, so they decided to let me go home while they consulted with Leeds to decide on the next course of action. I had to take antibiotics for the whole time, and I wasn’t allowed to do anything strenuous or go too far from the hospital, but it was so nice to get some time at home after 2 weeks in hospital.
The decision was made on Wednesday 11th Feb – I was to have an ERCP at Leeds, who would also re-assess me for a liver transplant. They booked me in for the 22nd Feb, which was the exact day that my sick note and antibiotics supply expired. phew!
The visit to Leeds was for two things; they were going to do an ERCP to have a look at my bile duct, and decide if the stones can be removed, and if a stent is necessary. They were also going to repeat some of the tests from July last year, to re-assess if I should be put onto the liver transplant list.
When I got there, I was surprised to find that I had a room all to myself! It turns out that there’s a hospital bug that’s common around Manchester hospitals that hasn’t reached Leeds yet. It’s not very dangerous, but it can affect particularly weak patients. This seemed like a great thing on the first day. No people snoring, no people ranting or hitting the nurse assistance button all day – just me! The view was pretty good too, facing south across Leeds and toward the hills. I could even see the Emley Moor transmitter – the tallest free standing structure in the UK (20m taller than the Shard). It’s not taller than a lot of other masts, but most masts aren’t free standing. I didn’t know that at the time.. I just liked being able to see its red lights at night. 🙂
Being infectious had it’s downsides, though – it meant that I couldn’t have appointments in between other patients, and so all my appointments were at the end of the day, and took longer to arrange because of having to be at the end of the list. As a result, what probably should’ve been a 3 day stay turned into a 5 day stay, and I only just got out before it became a 6! I was glad to be out, too. Leeds is a great hospital in many ways, but their food is AWFUL if you’re a vegetarian. Well, unless you really, really like omelettes..
But get out I did! The ERCP was a success; the stones were removed, and they added a metal stent which will last for a year before needing to be replaced. I’m now also on the liver transplant waiting list. I believe the reasoning is that according to blood tests, my liver isn’t coping too well, and they can’t be certain about how long it’ll stay working at a comfortable level. Better to be on the list and be deferred than for things to suddenly get bad and not be on the list. They’ll probably go into more detail when I go to Leeds later on this month, for a meeting about the decision. I hope the doctor’s got answers, coz my wife has sure got the questions!
oh, I forgot to mention – Leeds also monitored my blood pressure while taking beta blockers. I’m no longer on beta blockers. 🙂
More Tests
Now it’s time for Leeds to take control. The first stage of this was to give me a thorough testing. A Liver Transplant Viability Test, in fact. Scary-sounding!
The test is a series of tests, designed to assess my liver, and my body’s ability to cope with a transplant. It started with an MRI scan. Unlike previous MRI scans, they gave me a canula so they could inject a dye during the scan. Presumably it’s similar to what they inject during a CT scan, to highlight blood vessels or the biliary tree or something. The scan itself felt a lot longer than normal, and I think I was in there for about an hour. I’m pretty sure I fell asleep again!
Then, a week later, I had the rest of the tests. I don’t have the list with me, so I’ll have to go from memory..
- Various blood tests (over ten samples taken!)
- Urine test
- Chest x-ray
- Electrocardiogram
- Heart ultrasound
- Spirometry test (lung test)
No scary tests there. The weirdest one was the Spirometry, which was basically some breathing apparatus, and a nurse telling me to breath in.. hold.. BLOW OUT! BLOOOW! BLOOOOOOOOW!!! over and over again. Probably the hardest test I’ve had so far!
After the tests, I talked to a few consultants and specialists. I think they were the anaesthetist, a surgeon, a dietician, the liver transplant coordinator, and a bonus visit from one of the consultants. Not all at the same time, mind you – one at a time. 🙂 They all explained why I was having the tests, what they’ve found so far, and what might happen next.
The anaesthetist said that I had a leaky heart valve, but that was nothing to worry about – I should survive a transplant if one was required.
The surgeon went through a few options for what might happen, and asked a few general lifestyle questions.
The dietician said that my liver probably can’t store much glucose anymore, and if I get low then my body will eat muscle. Apparently my tendency to snack on sugary food and drink coke is actually a good thing, and I should keep it up! I need to eat more protein, and she seemed a bit put out that I can’t stand eating nuts (my wife is also apalled – it’s not good for a vegetarian to be a nut hater).
The liver transplant coordinator asked me a few lifestyle questions, and gave an overview of the options. Transplant, remove gall bladder, or monitor.
The liver consultant wasn’t on the list, but popped by anyway. That was good, as he was the most informative! He explained the options, and also the risks and reasoning. He also said that I should stop drinking alcohol completely, unless it’s a very special occasion. 😮
So, what are my options? It seems that there’s debate as to which is most dangerous: remove the gall bladder or replace the liver. A liver transplant is obviously dangerous. I think there’s like a 10% chance of not making it out of surgery alive. Removing the gall bladder doesn’t sound dangerous, but apparently it can have a bit of a domino effect. The removal itself is risky, due to possible bleeding, but it can also cause problems once it’s removed. Without a gall bladder, the liver tries to compensate by increasing bile production. Although the gall bladder isn’t there to inject stones, the increased bile production means there’s more of a chance of the ducts within the liver getting blocked due to PSC. Better to have it block in the bile duct than in the liver, I imagine. The other option is to leave everything where it is, do regular tests, and just make sure the bile keeps flowing.
After the consultants got together and reviewed the tests and imaging, they told me the verdict: leave everything where it is! 🙂
And that was the end of the tests! It’s good that I (and Leeds) know at what stage my disease is, and I can stop worrying a bit. I now have to go to hospital whenever jaundice shows up, rather than when I get feverish, which is sort-of good. I haven’t been jaundiced since the ERCP, and I hope it stays that way. The scars from the aborted gall bladder removal still hurt, which is annoying – I still can’t sleep on my front. Actually, that doesn’t annoy me – it annoys my wife, because it means I’m snoring a lot. 😛
Other than that, I’m healthy, and I’m getting back into cycling. My stamina sucks, but I’m faster than I was last year. I should get back into swimming, too, but my PSC has stopped that in a more unusual way – I lost so much weight that my old swimming trunks are ENORMOUS! I’m only down to a normal weight, btw. I was getting a bit overweight before all this happened, and losing 2 stone was by no means a bad thing.
The only thing left on the horizon is a possible ERCP to remove my biliary stent, but it seems that I might not actually have one. The report from Manchester Royal Infirmary seemed to indicate that they hadn’t put one in, but all the reports from the surgeon at Stepping Hill indicated that I had one in place. Leeds aren’t sure, so they’re contacting the person who put it in. If I don’t have one, then I’m free! well.. until the clocks change.. will I go yellow at the strike of 12? I shall try and keep this updated!
Adios!
Let’s recap! I was finally discharged from hospital on Friday 16th May, following an ERCP procedure to remove some gall stones. Then I went back on Monday 19th for a blood test, to see if I was actually recovering. I was, so they decided to book me in to have my gall bladder removed. On Wednesday 28th; practically only a week away!
I had to go back into hospital on the 20th for a pre-surgery appraisal sort of thing. Blood tests and a questionnaire, basically. I was told not to eat anything after midnight on the day of the operation, as I was having a morning surgery.
I got there at something like 8:30am, and was shown to my bed and asked to change into a gown. I got visits from the surgeons and the anaesthetist, explaining what little there was to explain. I’ll be under general anaesthetic, they’ll try to take out my gall bladder using keyhole surgery, but might have to go to proper surgery if needed. It all seemed fair enough. Just get rid of the damned thing, thanks!
After a few hours, I was walked to the surgical prep area, and waited around on a different bed for a bit. Then I was wheeled into a different room to have the cannula put in and the anaesthetic injected. I have to say, the anaesthetist was NOT very good at putting cannulas in – it was the most painful attempt so far, and that includes the times when my veins had put up a good fight against the intruding needle! At least the others stopped hurting almost immediately, whereas this one just kept stinging. I was worried he hadn’t put it in properly, but I didn’t get to worry for long, as the anaesthetic kicked in..
..and I woke up in my previous hospital bed! That never ceases to weird me out.
Unfortunately for me, my gall bladder didn’t want to leave quietly, and the surgeons had had to abort the surgery without removing it. Various things had contributed to the failure, which I would list if I could remember them.. What I do remember is that the gall bladder was too close to the liver, and the portal hypertension (a side effect of liver disease that affects blood flow from the spleen) had resulted in my body creating new veins to try and bypass my blocked liver, called porto-systemic shunts (doing an interweb search pulls up lots of results about cats and dogs, oddly), which had blocked the approach and made the risk of bleeding too great.
So, the surgeons had opted to abort, and possibly get Leeds to do it instead, as they have better facilities for dealing with shunts (a procedure called TIPPS) and bleeds. I still had all the pains of surgery, though – I had 4 incisions; one large one just under the belly button, one about 15cm above it, and two small ones on my right-hand side. They’d been closed up using glue, which was.. different. I was expecting horrible stitches, but as horrible as they are, they’re only horrible because they do their job well. Glue, I’m not so sure of. It seems a bit wishy washy to me, but it worked, and the scars I’ve been left with are pretty small. I can still feel pain, though, even over a month later. It’s not bad pain, but it’s uncomfortable – I can’t lay on my left-hand side, or on my stomach, and it can get quite painful if I drive the car for a little while. It should go away eventually.
Only a week after my operation, I had to go to Leeds for a clinic appointment. Fortunately, I’d *just* about healed enough to be able to drive. Stepping Hill had helpfully given me copies of some of their notes, in case the info hadn’t gotten to Leeds, which I naturally forgot to bring with me. gah! I don’t think it would’ve mattered, however – Leeds wanted to know what my condition was like while I wasn’t ill.
That meant more tests!
ooh, sorry about that – I went right off computers for a while. So, where was I? I was going to have a scan? That must’ve been the MRI to decide if I needed an ERCP..
I had the MRI scan on Thursday 8th, as planned, and I only just about made it through without falling asleep. I imagine the noise it makes must freak some people out, but it just reminds me of old dot matrix printers. BRRRRP. HONK HONK HONK. BRAAARRRP. BWWWWR. HONK HONK HONK. DUDUDUDUDUD. How can that not be relaxing?
I was told the following morning that I’d be having an ERCP as soon as they can find a space. Another weekend passed, and the ERCP date was set for Wednesday 14th, at Manchester Royal Infirmary. My trip to MRI required someone to escort me, so one of the nurses pretty much gave up her entire shift to escort me to MRI and then hang about with nothing to do for a few hours. It seemed like a right waste of hospital resources, but I suppose they have to make sure I’m okay. It’s hard to see myself as ill when I don’t feel ill.
The usual processing was done when I arrived.. blood tests, blood pressure, heart rate, all that stuff. The person doing the procedure had a word, and then we waited for well over an hour before it was time for me to get ready for the procedure. The nurse escort was allowed out for a cuppa, and I put on the dreaded gown, only to be asked a question I wasn’t expecting; “Shall I apply the suppository, or would you prefer to do it yourself?”.
errrrrmmm….
This had been mentioned before.. to reduce chances of pancreatic damage, a suppository anaesthetic is used. I just thought it’d be applied mid-procedure or something. I think nurses have to deal with a lot of horrible stuff in their line of work, and so I didn’t want to add to that unnecessarily, so I decided I’d try it myself! The suppository was bullet shaped, about 2cm long and 1cm in diameter. It goes in tip first, and is actually surprisingly easy to apply. It felt really weird once it was in, though – I was convinced it had gone in too easily, and would therefore fire itself out at an inopportune moment. Thankfully, it never did! 🙂
I then went to another prep room, where I sat and watched other people being taken through for what seemed like about 15 minutes. Then I heard my name mentioned, and it was time to go! The next room was pretty impressive.. it had the usual xray equipment, but also some kind of generator across one wall, and way more computer monitors than usual. There were at least 5 people there, all wearing what I assume were lead-lined aprons. I couldn’t tell for sure how many there were, as they were hidden by the huge arms of the equipment. In amongst all this was a bed, which I climbed onto (again – no point getting them to lift me when I can do it myself). They got me into position, which afforded me a good view of the monitors and a large rack of different tubings and attachments (kind’ve like the plumbing section of a DIY store). The mouth guard was put in, and someone added a drip to my cannula. I thought the operation was done under local anaesthetic, so I was looking forward to seeing them go on a journey into my ducts, and seeing how they manoever the probe thingy, but a few moments later I was waking up in a hospital bed. They’d used a general anaesthetic! Nooooooo!!!
Nearby, on the bed, was the report from the person who’d performed the ERCP, so when the nurse wandered off for some reason, I took a photo of it. I probably shouldn’t post the photo itself, as it’s probably confidential or something, but this is what it said:
Indications
Imaging revealed stone(s) in biliary tree and obstructed CBD.
Diagnoses
AMPULLA. Normal
BILIARY. Cholelithiasis and common duct stone(s).
Extrahepatic: Stricture due to sclerosing cholangitis.
Therapeutic procedures
Sphincterotomy
Stone removed: complete extraction using 12mm balloon
Advice/Comments
Normal ampulla
6mm CBD with stones
Multiple small stones in GB
Hilar and intrahepatic stricturing consistent with known PSC
Sphincterotomy, no bleeding
Approx 5 black irregular stones removed
Occluded cholangiogram – clear
No dominant hilar stricturing, but sub-optimally defined to avoid intrahepatic sepsis. Little right filling.
Should settle now CBD cleared
If jaundice does not settle, can procede to balloon dilation, but would need MRCP road map first.
Should be referred for cholecystectomy.
5 stones blocking my ducts! Black ones are created by bile, so not a lot I can do about that. The urso should stop any more being created, but I think there are plenty more where they came from.
I forgot to mention that I’d had to be nil by mouth for this procedure. I hadn’t eaten since the previous day, and hadn’t drank anything since 6am. It was now 4pm, so the cup of tea and ginger biscuits that they produced were the nicest things I’d ingested for quite some time! Next up was the wait for the ride home. I was supposed to be going home in an ambulance while still unconscious, but they’d started so late that we’d missed our time slot. There was worry that we’d have to make our own way back, until a space was found on a minibus. Due to the time that had elapsed, I was fully conscious and feeling normal, but the request still required me to be in a bed, so I was driven home in a bed, next to a couple of people who looked like they needed it a lot more than I did.
The next morning, most nurses reckoned I looked healthier, even though I was convinced I was yellower. The eyes are the best way to tell, and the yellow encroaching from the edges had gone from 20% coverage to 30%. I hoped I was wrong, but my morning blood test proved I was right – my bilirubin levels had jumped from 80 to 120! The hope was that it was a blip caused by the unblocking and draining of my biliary system, and the following morning my bilirubin levels hard started to drop again, and I was deemed to be recovering. I finally escaped hospital on the 16th – 3 weeks after I was admitted!
Alas, that escape was to be short lived, as I had to go back on the Monday for another blood test, to make sure that I was still recovering. I spent most of the day waiting in the hospital for the results, but the results at least turned out to be good. Good enough for them to book me in to have my gall bladder removed!
That, however, is a different story..
It’s unusual to hear about PSC in the news, and even weirder to hear about it while in hospital. I’d heard that Elena Baltacha’s cancer was a result of PSC, but didn’t expect her death to come so quickly. I found out she died today, when a patient mentioned it to a nurse.
It’s weird.. People die of all sorts of things on a daily basis, and PSC isn’t too bad a disease to have, so I haven’t worried about my own mortality too much. I didn’t know duct cancer was 1 in 10, though. That’s a bit scary! But what can I do? Other than hassle doctors for checkups, not much. Worrying would be futile, so the best I can do is enjoy life as much as I can. Frankly, everyone should be doing that, coz death could come at any time.
Having said that, I’m still stuck in hospital, and I’m not having a whole lot of fun. The scan’s due on Thursday, so maybe I’ll be out soon, and allowed to try and cheat death while cycling instead!
I guess I should keep this.. er.. journey updated. I’m still in hospital, I haven’t had an ERCP/MRCP yet, my fever’s gone, my antibiotics have finished, the catheter’s out (yaaay!), and all I’m really doing is hanging around waiting for an MRI (the scanner) scan so that Leeds can see if anything else needs doing.
I’m getting deja vu, in fact. The exact same thing happened 2 years ago, before I was diagnosed. Spent a week in hospital after my fever had gone, wasting my time and money (I don’t get paid sick leave, so it costs me about £80 a day) waiting for an in-patient MRI availability that never materialised. I ended up having the scan as an out patient a few weeks later.
What’re the chances that the MRI scan ends up being an out patient appointment again? Pretty high, I reckon. At least they’ve let me out on day leave for the past 2 days!
The MRI! No, not a scanner, but the abbreviation that Manchester Royal Infirmary seem to always be known by. How that doesn’t cause constant confusion, I have no idea.
So I’ll be going on a little trip into Manchester for my MRCP, where someone will plonk a plastic tube into my liver. Not sure when it’ll happen, but I hope it’s soon, coz I HATE this sodding catheter. I mean.. Why do I need one for treating an infection? They didn’t do it last time, when it might’ve made more sense.
Well, being normal coloured didn’t last long. Over the weekend, I started feeling a bit feverish, and on the Sunday I was yellower than a Lego man, with a full fever going on. Poo!
I visited my gp on the Monday, and was referred straight to hospital, who put me on various drips to fight the fever and the infection. My temperature got up to 39.8, which I’m sort of proud of. 🙂 I also had a ct scan, an xray, and lots of blood taken. For some reason, they also gave me a catheter. I can’t say I appreciated it!
This morning, they told me what the scan revealed: a blocked duct. The doctors are now trying to contact Leeds (I’m currently in Stepping Hill hospital, in Stockport) to see who gets to do an mrcp, to unblock the duct.
Pesky PSC 