Just a brief update:
I had my right upper quadrant ultrasound today, and the PA called me this afternoon to let me know that all looked fine with my liver, biliary tree, and gallbladder. Yay!
But the ultrasound also identified "pleural effusions" (fluid around the lungs). Boo! That wasn't what they were looking for at all, and the PA seemed totally baffled by the whole thing. Next step is to check with my primary care doctor and rheumatologist to see what they want to do about figuring out the lung thing. I'm not experiencing shortness of breath, which would be the most obvious symptom of lung problems, so I'm hoping they say we can just ignore it, because this is starting to feel a little ridiculous.
I'm beginning to wonder if every time I go to a doctor they're just going to find something new wrong with me - fibroadenoma, low platelets, high bilirubin, fluid around my lungs, etc. Should I take this as a sign that my body is just falling apart? Or maybe that too many medical tests just leads to finding weird things that would never even have been noticed otherwise? Seriously, I am starting to feel personally responsible for those rising health care costs we keep on hearing about.
Apparently, most of the stuff they were testing for in my blood work involves a lab in Iowa, so I won't get the results of those things until next week. More waiting...
Thursday, February 25, 2016
Saturday, February 20, 2016
The Latest
For those of you following along at home, here's a brief update after my appointment with the gastroenterologist on Friday:
Basically I don't have any more answers. I had been hoping that she would look at my info and say "it's no problem, we don't have to worry about it," but that's not exactly what happened. It's still quite likely it's not a big deal (perhaps Gilbert's Syndrome, which is basically a benign genetic condition where your liver doesn't properly process bilirubin), but we need to do some further testing to rule out other causes. My increasing nausea, low platelets, and autoimmune stuff raise some red flags, I guess. So, I'm in for an abdominal ultrasound next Thursday morning, as well as more blood work for all sorts of weird things (anti-mitochondrial antibodies? my knowledge of the human body is expanding every day!).
On the upside, my elevated levels are primarily indirect (unconjugated) bilirubin, which makes it unlikely that this has anything to do with medication. So, that's good. Also, apparently you don't start turning yellow until your bilirubin is consistently above 3.0. My last test was 2.9, so we'll see. :)
I do think going back on the Cimzia has helped my pain somewhat. It hasn't been quite as bad the last week.
Also, it's warm and sunny today! I'm going to attempt a bike ride with my very eager son.
Basically I don't have any more answers. I had been hoping that she would look at my info and say "it's no problem, we don't have to worry about it," but that's not exactly what happened. It's still quite likely it's not a big deal (perhaps Gilbert's Syndrome, which is basically a benign genetic condition where your liver doesn't properly process bilirubin), but we need to do some further testing to rule out other causes. My increasing nausea, low platelets, and autoimmune stuff raise some red flags, I guess. So, I'm in for an abdominal ultrasound next Thursday morning, as well as more blood work for all sorts of weird things (anti-mitochondrial antibodies? my knowledge of the human body is expanding every day!).
On the upside, my elevated levels are primarily indirect (unconjugated) bilirubin, which makes it unlikely that this has anything to do with medication. So, that's good. Also, apparently you don't start turning yellow until your bilirubin is consistently above 3.0. My last test was 2.9, so we'll see. :)
I do think going back on the Cimzia has helped my pain somewhat. It hasn't been quite as bad the last week.
Also, it's warm and sunny today! I'm going to attempt a bike ride with my very eager son.
Wednesday, February 10, 2016
February Update
Happy Lent everyone! I never seem to make time to write blog posts when things are going smoothly, so my apologies for ending the long gap in posts with more less-than-good news. But I know some people want to hear what's going on, so here's the deal:
In my routine blood work at the beginning of December, my bilirubin levels were a bit high. So, my doctor asked me to come back in to retest them in a month. They were quite a bit higher at the retest, so she asked me to stop taking my Cimzia (the immune-suppressant injection I do every two weeks). Liver problems would be an unusual side effect of Cimzia, but it was worth checking to see if stopping those injections would help. (One positive effect of this hiatus is that I can say with confidence that the Cimzia had been helping. It's sometimes hard to tell, when my pain levels are so variable anyway. But I've definitely noticed my pain increasing significantly over the past month, and it's made for some pretty rough days and nights. So - the Cimzia does help somewhat. Good to know.)
Anyway, after a month off the Cimzia, I went in for a retest last week, and my liver numbers are still climbing. The upside: I am able to restart the Cimzia, since it seems unlikely that it's the culprit. Hopefully it will kick in again soon and my pain will be more manageable. The downside: neither my rheumatologist nor my primary care doctor know what's going on, so now I have to go see a liver specialist to see if we can figure it out and decide what needs to be done next.
It was going to take until late March to get in to see the liver specialist, which is way longer than I want to wait to get this resolved. Fortunately, the doctor has a physician assistant that I can see next week, so we'll start there.
As is always wise when you have undiagnosed medical problems, I've spent a fair amount of time with Doctor Google. (Actually, I don't have too much of a tendency to freak out about things I read on the internet, so mostly it's just helpful information gathering.) From what I can tell, and from what my doctor has said, it seems like high bilirubin can be caused by all sorts of different things, some of which are serious and some of which are not a big deal at all. And it seems like there's no real way of knowing at this point. So, I'm choosing not to worry about it. We'll just wait and see what I find out next Friday. I'm not turning yellow yet, so I think that's a good sign. :)
It's been a rough couple of months, but I'm trying to remember that this time of year is always rough in Wisconsin - chronic illness or not. Seriously, we all need some more warmth and sunshine! I'm hopeful that restarting the Cimzia will bring my pain back to "I can live with this" levels and that the liver thing will end up being no big deal. If not, at least I have spring and Easter to look forward to!
In the meantime, prayer, fasting, and almsgiving seem like a good way to pass the time while I wait:"Even now, says the Lord, return to me with your whole heart, with fasting, and weeping, and mourning. Rend your hearts, not your garments, and return to the Lord, your God."
In my routine blood work at the beginning of December, my bilirubin levels were a bit high. So, my doctor asked me to come back in to retest them in a month. They were quite a bit higher at the retest, so she asked me to stop taking my Cimzia (the immune-suppressant injection I do every two weeks). Liver problems would be an unusual side effect of Cimzia, but it was worth checking to see if stopping those injections would help. (One positive effect of this hiatus is that I can say with confidence that the Cimzia had been helping. It's sometimes hard to tell, when my pain levels are so variable anyway. But I've definitely noticed my pain increasing significantly over the past month, and it's made for some pretty rough days and nights. So - the Cimzia does help somewhat. Good to know.)
Anyway, after a month off the Cimzia, I went in for a retest last week, and my liver numbers are still climbing. The upside: I am able to restart the Cimzia, since it seems unlikely that it's the culprit. Hopefully it will kick in again soon and my pain will be more manageable. The downside: neither my rheumatologist nor my primary care doctor know what's going on, so now I have to go see a liver specialist to see if we can figure it out and decide what needs to be done next.
It was going to take until late March to get in to see the liver specialist, which is way longer than I want to wait to get this resolved. Fortunately, the doctor has a physician assistant that I can see next week, so we'll start there.
As is always wise when you have undiagnosed medical problems, I've spent a fair amount of time with Doctor Google. (Actually, I don't have too much of a tendency to freak out about things I read on the internet, so mostly it's just helpful information gathering.) From what I can tell, and from what my doctor has said, it seems like high bilirubin can be caused by all sorts of different things, some of which are serious and some of which are not a big deal at all. And it seems like there's no real way of knowing at this point. So, I'm choosing not to worry about it. We'll just wait and see what I find out next Friday. I'm not turning yellow yet, so I think that's a good sign. :)
It's been a rough couple of months, but I'm trying to remember that this time of year is always rough in Wisconsin - chronic illness or not. Seriously, we all need some more warmth and sunshine! I'm hopeful that restarting the Cimzia will bring my pain back to "I can live with this" levels and that the liver thing will end up being no big deal. If not, at least I have spring and Easter to look forward to!
In the meantime, prayer, fasting, and almsgiving seem like a good way to pass the time while I wait:"Even now, says the Lord, return to me with your whole heart, with fasting, and weeping, and mourning. Rend your hearts, not your garments, and return to the Lord, your God."
Subscribe to:
Posts (Atom)