Hi all, I recently joined the site. Thank you for welcome emails. I thought my first post would be to introduce myself and detail my story so far.
My name is Brett and I live in Kent in the UK. I am 32 years young and work as a engineer within the aerospace industry.
When I was 8 after a lot of illness and weight loss my concerned parents gave up on the miss diagnosis from the NHS and took me to a private hospital where, after months of being ill and passing blood I was finally diagnosed with UC. From the ages of 8-18 I was on and off various concoctions of drugs, mainly prednisilone steroids. The weight gain was unwelcomed especially being so young but I generally lived a normalish life apart from always eyeing up the nearest bathroom where ever I went. at 18 after another flare a recent colonoscopy revealed pre cancerous cell changes and the steroids no longer worked so I had to under go a restorative procto collectomy to remove my diseased colon. After a 2 stage OP I have had a J pouch 14 years and counting.
Also at 18 I was diagnosed with PSC and told I may need a liver transplant within 10 years. Fortunately I have been on urso tablets all this time and been symptom free since diagnosis which is almost 15 years. Recently my bilirubin levels were 99 there was no noticeable difference in my ultra sound scan, but my eyes are turning jaundice and I am suffering with extreme fatigue. I am currently awaiting an appointment on 15th march to find out what is going on, but it might be that the waiting list for transplant is getting more imminent
Thanks for introducing yourself to the group and sharing your story with us. Just wanted to make sure I'm reading your bilirubin level correctly. Did you say "99" or 9.9"? I don't think I've ever seen a bilirubin go that high before. Wow, you must be having some big-time itching episodes. Are you under the care of a hepatologist there in the UK or just a regular GI? I did a recent online course on liver transplantation put on by the University of Birmingham. Not sure how close that hospital is to where you live, but they do almost 200 liver transplants a year. I'd highly recommend you seeing one of their liver hepatologists for a full work up. Here's a link to their liver department http://www.uhb.nhs.uk/liver-unit.htm Keep in touch and let us know how you are doing.
This is the mail my liver doctor sent after my blood test but I guess he may have missed a decimal point… If haven’t had any noticeable itching problems yet.
Dear Brett,
Your bilirubin has gone up to 99.
I have requested an urgent ultrasound in the first instance. If you have any fever you need antibiotics. When you have the ultrasound date let me know and we can meet.
Kind regards
Well it does look like that's where it went from the urgency of his note. I hope they find out the problem soon. I just had never heard personally of such a high bilirubin and then no itching. That's interesting to say the least.
I thinking is prone to going up and down quite a bit isn’t it? I had a cold when they took the ultrasound and I had to starve for 6 hrs before hand to. Maybe they were contributing factors. My eyes are bad today and I think I have been itching a bit, but of course every single itch goes unnoticed now so it’s hard to attribute it to the PSC for certain.
If your itching should intensify I would recommend a Rx that was the only thing that helped get my itching under control. I took it for 4 years prior to transplant. It's called "Rifampin". I took 300 mg., twice a day. Just something to keep in mind should you start having it bad enough to really start bothering you.
Thanks for you help. My itching has increased but it’s bearable at the minute. I had my appointment with my consultant he he said my liver function has just deteriorated too much now, there is nothing they can do like a stent to open up a duct. I am now awaiting an assessment for a liver transplant, so it’s all happening now. The fatigue is what’s bothering me most so just need to see what happens now, hopefully I’ll soon be fixed.
I hope your transplant evaluation goes well. If it is anything like mine was you will be there all day long so be sure and get a good night of rest the day before. I remember the fatigue well when I was very sick before transplant. I could just sit down and about fall off to sleep. It was so embarrassing when I was in a conversation with someone and would start dosing off and I just couldn't help myself. All that will change after transplant so you have something to look forward to. One thing I would encourage you in, and that is to keep exercising daily, even if it's just 30 minutes on the treadmill. You need to keep your core strength built up, it will make the recovery from surgery go so much better. Watch out for muscle wasting by drinking protein drinks or anything to build up your protein. At this point in the game I wouldn't worry too much about calories unless you are already overweight. I had lost so much weight that they told me to just eat anything I liked pretty much. Keep in touch and let us know if we can help you with any questions you might have.
Heres my update since mid March I’ve had enoscooy, MRCP, ultrasound, lung function, heart echo test, countless blood test and urine tests, CT scan, pouchoscopy,.amd some ice probably forgot.
Next Monday and Tuesday is my actual assessment with the surgical team and after that I’ll be officially on the list.
I’m quite high priority, as my bile Rubin was 300 last time it was checked.
Symptoms I now have is probably all of them. Fluid retention in stomach legs and feet, really bad fatigue, weird dreams confusion slurred speech to name a few so far. Fingers crossed it happens in the next few months.
Glad to here that you are on the verge of getting listed for transplant. I hope your assessment's next week go well for you. I would encourage you to please get a good night of rest Sunday night. If it was like mine it is going to be a very long day for you. Bring some snacks along as well. Good luck and let us know how it goes!