Well before I begin, I know it's probably been the longest ever time between blog entries ever since I started this blog several years ago, and believe me, there's a pretty good reason for that. I should also forewarn that this is going to be a pretty epicly long blog entry. I actually typed most of this entry out from a hospital room after spending 4 nights there.
I was slightly apprehensive about actually posting this entry publicly, but I know a lot of people are worried about me and this is probably the best way to let people know (plus it'll actually make the blog more interesting ;)).
Okay, here it goes: pretty much nearly all my time since my last entry has been spent seeing doctors, specialists, surgeons, radiography clinics and hospitals. But that's getting ahead of myself, so I will start from the beginning.
Since the beginning of this year I haven't been feeling 100%. I noticed myself getting a bit lethargic, my hunger disappearing, losing weight (which was good! - at first), and feeling nauseas when eating certain foods. Soon enough lent came along (for which I totally fasted from meat), and I chalked the way I was feeling down to not having enough meat and possibly a stomach-bug before-hand.
Lent and Easter eventually finished and the symptoms continued. At the start of May I took a short week-long break from work and during that I planned to go to the doctors to get checked out. I was worried that because of some of my symptoms I was developing diabetes, and in hindsight i really wish that was the case. I did a set of blood tests, a stomach ultrasound and a stool test. Pretty much the day after those tests, it confirmed there was something not right at all.
The ultrasound showed my liver was inflamed and the blood test showed my liver-indicators were through the roof. I was suspected of either having gallstones (although the ultrasound didn't show any) or a hepatitis virus. So I went back to the radiography place for a CT (or CAT)-scan to look for gallstones, and had more blood tests to check for hepatitis. Both came back negative, but the CT scan did show that bile was backing up in my liver (thus causing the inflammation and stress), although there was no obvious physical blockage causing it. So I was then referred to a gastroentetrologist specialist.
After seeing the specialist, he floated it might be something called primary sclerosing cholangitis (PSC - which I will explain later), but wanted to do a few more tests first. I had another couple of blood tests, two sets of MRI scans, and later that week had what he referred to as 'a double', which was an endoscopy (tube down the throat to look at the stomach) and a colonoscopy (tube up the other end to look at the bowel and colon), both in the one session (of course whilst under heavy sedation).
The prep for the colonoscopy was not pleasant, as it pretty much involves not eating anything with fibre for three days before the procedure, and on the day before the procedure flushing yourself out with some pretty hardcore laxatives. It was a very physically draining process (ha, literally...), and by the end of it I was really worn down.
The endoscopy didn't turn up anything, but the colonoscopy showed that I had ulcerative colitis. This discovery as well as the MRI scan pointed right in the direction of PSC, as nearly 70% of people with PSC have associated ulcerative colitis.
This is probably a good time to explain what PSC is. PSC is about a 1/10000 (or depending on the source a 6/100000) condition which affects the bile ducts both inside and outside the liver (it is not contagious or transmittable in anyway, so don't worry). It's an autoimmune disease in which the immune system wrongly attacks the bile ducts which causes them to become irritated and inflamed. This stops or hinders the flow of bile from the liver to the gut, and thus the bile backs up in the liver causing stress and over time eventually cirrhosis, and because the bile isn't getting into the gut it also means that digestion of fats etc. isn't happening as it should be.
Anyway, after 'the double' the doctor wanted to perform another procedure called an ERCP, which involved going down the throat and trying to insert a catheter up the common bile duct from the stomach to inject dye into the intra-liver bile ducts to see the extent of blockages. I had this done the following week and it wasn't that successful: because of the blockages (or strictures as they called) none of the dye actually made it up into the liver.
After this, it was pretty much confirmed that I had PSC. Looking it up on the internet didn't make for good reading. Some sources claimed an estimated 10-15 year life expectancy after diagnosis, and most agree that the only permanent treatment was a liver transplant. After meeting with the gastroenterologist, he referred me to the liver transplant surgeon at the PA hospital. This all really floored me. For a guy like me who is only 27 years old, pretty much very healthy, not overweight, reasonably fit, never smoked, never been drunk, never done any illicit drugs, and hadn't contracted a hepatitis virus, to be told I would probably need a liver transplant is quite hard to take.
We saw the transplant surgeon and got some relatively good news. He said that I wasn't that far along yet in terms of progressing to liver failure (my liver is still functioning quite well, and I am not jaundice), so in his opinion a transplant in the near future would not be appropriate. Unfortunately, he did think a transplant would be in my future somewhere down the track, but because of the unpredictable and variable nature of the way that PSC progresses, there really couldn't be any accurate prediction of when (or possibly even if) this would be necessary.
I have now been referred to a hepatologist with experience with PSC and transplantation for further advice on how to manage my condition, which I am seeing next month.
So fast forward a bit of time: I was in hospital this week with complications due to the colitis (which as i mentioned earlier is a condition that is strongly associated with PSC). This is all a new experience for me: other than an overnight hospital stay when I was two years-old to get my tonsils removed, i've never been admitted to a hospital. It hasn't been a totally bad experience, i've got private health insurance so i was eventually was given my own room (that was a story in itself), and being waited on by the nurses ain't bad, it's almost like a full-service hotel.
Whilst there I did have another procedure called a 'flexible seigmodoscopy', which from what I understood was like a 'diet'-colonscopy. Unfortunately the sedation was also 'diet', which meant that I was conscious (albeit mostly out-of-it) through the whole thing. Not a nice experience.
Yesterday I was discharged, and now i'm home recovering. I missed having internet whilst I was there (anyone at the Mater Private listening?), but other than that (and initially getting put into a shared room with an emphysema patient), i've had a good stay in my private room, which is honestly what I expected from my private health insurance. The World Cup started at a good time, which meant I had something to watch on TV those nights I didn't sleep well.
I posted on Facebook the other day that i should be a poster-boy for private health insurance. If people need a reason why they should have it, they should look at me. Before six months ago I was very healthy, without any serious medical history short of a broken foot. I almost never got sick, and really only ever got a cold/flu once or twice a year, and had never been admitted to hospital since I was two. To go from that to where I am now, I am very grateful that I have my health insurance. I guess you never know if you are the one to get one of the probably millions of 1/10000 diseases or conditions out there. If you're like me, I don't have too much trust in the public health system at the moment (they can't even pay their employees correctly for goodness sake).
At the moment I really still don't know where all this is heading in terms of my future, but you can be sure i'm going to be trying all that I can to avoid a liver transplant.
I found it ironic that the weekend after being told I might need a transplant, the Federal Government launched it's Organ Donor awareness advertising campaign. I've always felt very strongly about organ donation (i have been a registered donor for years), so I strongly urge everyone to register themselves too and discuss it with your families. You never know when someone like me or you might need an organ to survive. If your not going to be using it after you're gone, why not help out somebody else in dire need? But I guess that's a good topic for another rant entry some other time.
I'd also like to publicly thank my family, especially Des and Mum for helping me through this whole thing, I really don't know how I could do it without them. Also lots of love and thanks to everybody's well-wishes and prayers that I have received. As always, they are very much appreciated.
Onto the future.
13 thoughts on “The Game Changer: Serious Illness”
It hardly seems fair that this happens to you when you've done nothing but take care of yourself your whole life.
I hope that everything is on the up for you here, and that if the worst case scenario does come up and you need a liver transplant (God forbid), everything goes ahead smoothly.
But God willing, you'll make a full recovery soon and everything will be fine. Thanks for filling us in about everything that's been going on, and be sure that you can rely on our prayers and support whenever you need them.
Get well soon, Lucas, and see you soon 🙂
Geez that must've taken ages to type out, but I guess that's helped keep you occupied while in hospital.
Drawing from my own experience, God puts these things in place to give us opportunities. Through struggles like this can be a massive opportunity to shed the superficial loves of life and recconnect with your core, or your soul, and also recconnect with your relationship with God.
When I see people sick or stuggling, as well as prayers for recovery, I moreso pray that their struggle may not be in vain and that they may use their struggle as a spiritual enriching experience that will change how they live the rest of their life.
Wow Lucas, I am so sorry that you've had to go through this. What a hugely challenging and upsetting experience.
You have my support, I wish all the best in treatment and care for you.
Thanks for sharing what's been happening.
Our thoughts and prayers are with you.
Hang in there and keep fighting. I know you'll be just fine!
My favorite line was "epicly long".. haha. 🙂
Thanks guys for all the support, it really does mean a lot.
Hey Lucas, I hope that you may feel much much better very soon and I don't know why but I had trouble reading your blog the white on blue background sent my eyes beserk. But I am glad I understand what you are going through and we all hope you get better even the "yucky baby" Lexie. 🙂
Dearest Lucas, you are in our thoughts and prayers. We wish you a full and speedy recovery, we love you.
Hey Lucas, My prayers are with you at this time. If you need anything let me know! My first offer would be Nandos but I'm not sure if you're able to eat that right now :p
are you sure that wasn't the same tube for the colonoscopy? if it was you want to hope they went in through your mouth first, lol (a little laugh to brighten your day)
this gives you a chance to take sock, see what you have accomplished and what you have yet to accomplish. i'm not trying to make it sound like the worst case scenario, but it affords an opportunity for clarity with respect for your future.
are you off work this coming week? feels like i haven't seen you in ages, i'll come around for a visit if you're not working.
Sounds like a hard slog Mate. Lucky you got a good group of people around you to help you through.
I am sure you will smash it... have lots of vitamins apprantly (everyone is a wikipedia doctor these days 🙂 )
Hi Lucas. I was admitted to hospital with acute liver disease in June. I was diagnosed with PSC and ulcerative colitis 12 years ago. I was told that I had about 3 months to live unless I got a transplant. I am delighted to say I got a liver transplant in July and feel better every day. All the best.
Hi Charles, thanks for commenting, and it's great to hear that your transplant went really well.
Do you mind me asking where you are from? It would be interesting to know how long you were on the waiting list for the transplant, it's very unfortunate that generally in Australia a lot of people die waiting for an organ. Despite high donor registration rates, many families deny organ donations at the time of their relative's death.
I'm not sure if you've seen my latest blog entry, but the doctor's now think I don't have PSC, and things are starting to look better regarding my liver condition (latest post here: http://lucascosti.com/blog/2010/09/illness-update-misdiagnosis/