Things have finally calmed down in my system so I can blog. Feels that way anyway, future tests will show over the next month.

About 10 days ago I had my third liver biopsy since this whole mess started about 2.5 years ago. Another transjugular biopsy done at the Royal Victoria hospital in Montreal. It’s supposed to be a more or else routine and safe day-long thing … but I guess it was not so for me. The radiologist who performed the surgery was noticeably distracted: asking for his cell phone, checking pager, and giving obscure breathing instructions (like yelling ‘again!’ … as if I would be in the right frame of mind to remember the last 3 steps we did). Luckily the nurse was there to stand up for me, refusing to give the doctor the pager info, telling his she had it and it will wait until AFTER the procedure is done! My back was killing me the whole time, I still have problems lying flat … and on a table with no padding for 45-60 minutes without being able to move most of that time. Well, it was horrible (I literally was in tears and could not will myself up from the table afterwards). And to make things worse, just after they took the second sample, the computer that controls the x-ray scanner burnt up! So they had to take everything out blind and were not able to take a final snapshot to make sure everything was clear. I don’t know if that has anything to do with what followed over the next week, but I think it’s likely. Anyway, I was off to recovery for 3-4 hours - felt ok except for the pain just below my sternum, where they must have taken the sample from. My blood pressure was also really low, dropping below 80/60 and only at 107/68 when I left recovery. I’m usually around 130/85

Anyway, low an behold the next day, nearly black stools. Of concern always, but cleared up after 24hours. The pain the in abdomen, general aching and swollen sensation, and dark urine worsened over the days that followed. Friday morning I felt that I couldn’t wait any longer and decided to have my sister drop me at the ER in St-Jean on her way to work. What a painful experience the ER is, especially for someone in my condition. There were supposedly no beds available while I waited. So I had to stand, sit, and walk around all day. For 12 hours! Now that is bad for the average person, but for me and my back, it’s completely debilitating. I can usually only tolerate this for 2-3 hours and then have to retreat to the inclined position for at least an hour. No such luck.

Anyway, they took blood and sent be for an ultrasound (what a useless procedure!). I guess they thought that I might have an ascites that became infected during the procedure. In retrospect, the doctor was an idiot. Even if I has ascites, I don’t see how the ascites would get infected. but anyway. After that indignity was over, the doctor met to discuss the results. Oh boy, I know it was likely that my Liver Function Tests (LFT) were elevated, but I had no idea how much. my ALT/AST were in the 400-700 range, and my billirubin at 87. This is after 4-6 months at normal levels around 30/35 and 10, respectively. So, that pretty much means liver is failing - those numbers are close to what they were about a month after i was diagnosed and jaundiced for months. :( What a blow.

So I was admitted to the hospital that evening and observed for 2 more days. during that time I had a CT scan, my first believe it or not. The idiots who run the Royal Victoria hospital where I am followed, have a ridiculous policy on who they allow to use their machinery. If you happen to exceed the completely arbitrary weight specification listed in the manual, you are denied service. What a pathetic and absurd policy, to put the lives of patients at risk over something so moronic. I’ve been denied CT, MRI, bone scans, all kinds of things. Even when I was in liver failure and in the hospital for 17days with doctors not knowing what was happening. Often only finding out when I walk into the scan room and the tech makes a prejudiced and unprofessional decision to deny me use of the machine (often with a rude, insulting, and indignant remark). Seriously, my first attempt at the CT scan the administrator looked at me and said “no way am i going to let that fat guy use MY machine”. Unbelievable. Anyway, at the St-Jean Hospital things are better. Not only is the machinery better and newer, the techs actually know what they are doing and are willing to try to accommodate anyone who needs their services.

So I have my CT scan after long last. I haven’t had my specialist look it over yet, but the local gastroent. said there was nothing too unexpected there that was currently endangering my life. So sent me home. Sis came and picked me up Sunday night and I was sleeping in my bed soon after. Wasn’t able to leave the house for a couple days because of the back pain, but at least the abdominal pain lessoned day by day and is now gone.

The blood results taken daily for 3 days at the hospital showed a significant and steady drop in the values. So I did not have to go back on steroids (at least not yet). I’m so thankful for that!!! I’m just starting to feel like myself again. I haven’t told many people, but being on steroids is absolutely horrible. Not only are you an emotional wreck, teetering on violence, foggy, forgetful, and develop sometimes grotesque-feeling physical side effects … but you don’t dream … and well, to keep it PC, sexually, things just don’t work right. Imagine though, not dreaming … is there anything that makes you feel less alive than the absence of dreams! Makes the last 6 months of constant and severe joint pain, daily day-long headaches …. worth it just to be off the steroids.

So, I have my next appointment on March 13th where I will receive the results of the liver biopsy. Prior to the procedure I had been hoping for good news. But during the procedure, based on the numbers called out by the radiologist, I’m fearing that my liver is worse off (again) than it was a year ago. My hepatic pressures and portal pressures were higher than last time. Portal pressure in the range of 14-16 this time, compared to 11-12 last time. I’m fairly certain that corresponds to more fibrosis/necrosis of the liver tissue and means that I do have portal hypertension and am at a high risk for esophical varicies, which if burst lead to massive internal bleeding. Not a pretty or fun thing to be sure. But I try not to get too far ahead of myself, may not be that bad … I have to wait for the doctor’s opinion. So until then, I have 2 more blood draws scheduled, so we’ll be able to see if numbers are still dropping and how long it may take to return to normal. Hopefully not long!

This entry was posted on Friday, February 22nd, 2008 at 9:52 am and is filed under Health/AIH, Montreal, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.