I’m at home this weekend on a bit of a break from the tests at the hospital. “Conge” as the french nurses call it, which means vacation. LoL. Not quite that, but it does feel good to be home and I’m doing pretty well. Sleeping solid for 6-8 hours 2 nights in a row. Still able to do a bit of work like dishes and cleaning a bit of the fridge. Still have the pain in my gut when up and about for a while, but nothing too intense. Haven’t had any intense pain in my liver/gallbladder area since my last night in the hospital 3 days ago. Then it lasted for 4-5 hours and required a shot of pain killer. I think it was brought on by ‘trying too hard’ to produce a stool, which makes since as this is what also seemed to immediately precede my second ‘episode’ on Friday (two weeks ago now).
Doctors still haven’t given me a clear idea of what’s going on and waiting for the results of my camera capsule endoscopy and a scan I will take on Tuesday. But one of the general doctors at the hospital is convinced that I actually have 2 things going on. Some kind of intestinal bleed AND either a problem with my liver or gallbladder - the latter brought on by some complication of my liver biopsy and/or me stopping my prednisone a month prior.
So I’m back on prednisone and not at all happy about it. been struggling with it all week. At first they put me on 30mg a day. After 2 days at that level, I was already having the usual troubles. Not sleeping at night, blurred vision, headaches, having a hard time controlling my rage, food cravings, etc, etc. It’s horrible. The specialist didn’t some see me after that to reassure me and address my concerns about this horrible medication, so I made the decision to stop taking the pred until I spoke with him. Based on the information I had at the time, it seemed as though my Liver Function Tests (LFT) were steadily decreasing at the same rate before and after the prednisone intake and also as quickly as they were doing 3 weeks prior during my last hospital stay (also without having to take prednisone). So seemed right at the time. But, sadly, after being 2 days ‘pred-free’ my LFT seemed to flat line. And the Gastro specialist came in and yelled at me for stopping the meds and basically telling me that he was not going to treat me since I was dictating my own treatment. Guess he was right to say that and feel that way. But after seeing the latest results and confirming with my regular gastro specialist, I agreed with them that I should be on prednisone. I negotiated them down to 20mg a day. So I’ve been on that for about 4 days now.
It will be a total of 6 days at 20mg when I take my next blood test on Tuesday, so hopefully that will be long enough to demonstrate if that is enough, or if I can hopefully decrease the dose. If my LFT (particularly my ALT and ALP) are dropping at 40-50 a day like they did before, I should once again be approaching normal LFT levels. I had plateaued at about 300 ALT without the med, down from a high of about 600 5+ days before that. I seem to be coping a bit better at 20mg, perhaps because my body is once again adjusting to the dose, or perhaps because I’m at home and away from the stress and annoyances of the hospital. Will probably be a month or 2 before what I call the ‘monsterism’ sets in, including the bloated moonface, buffalo hump, and erratic metal status. I’m not a vain person, but I really hate myself when on this medication. I’m angrier and easily enraged … and my physical attributes only draw attention to that behaviour when I’m out in public or around people. It’s not fun at all.

But gotta do what you can to stay alive right? I still haven’t been able to come to terms with with it really means to ‘be alive’ when in this state as I can’t really do anything I enjoy at the moment. Can’t travel or even really enjoy myself outside or at some restaurant. Just take solace in spending time with my immediate family, which is great, don’t get me wrong. But that’s all I’ve had now for about 3-4 years (even before diagnosis and before I noticed serious health problems). I’m not sure it’s enough to really be considered ‘living’ as I can’t really experience any passion or feel the satisfaction that comes from working hard and achieving something. I especially miss working with people - with my ongoing back problems and now this liver upset and gastro-intestinal bleeding thing going on, the prospect of getting back to anything resembling a life seems all the farther away. But I remain hopeful, it was only 2 months ago when I thought all was well and looking great for the future. Liver function was normal and I was getting out to do groceries etc without too much trouble. Well enough that I was determined and planning on moving back out on my own this summer, and forcing myself out to interact and find some friendships and activities that I enjoy. So perhaps it will turn around that quickly again. It’s heartbreaking though to not be able to even plan 2 months in advance to make a significant change in my life. As if I’m imprisoned by my health problems and whenever I go in front the the parole board, I get turned down. sucks.

This entry was posted on Sunday, March 23rd, 2008 at 9:58 am and is filed under Health/AIH, 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.