So I got out of the hospital last night after my 4th extended stay in the last 10 or 11 weeks and 5th in the last 4 months. My hemoglobin keeps crashing, leaving me anemic and unable to do almost anything physical. But this time it was combined with an infection that spiked my fever to 102.8 late Thursday night. I ended up in the ER at 2 in the morning.
Over the course of these hospital stays, I’ve had three endoscopies and one colonoscopy looking for the cause of the problem. I do have a stomach ulcer, brought on by the prednisone I’ve been taking to treat my sarcoidosis for the past year and a half. We’re in the process of weaning me off the prednisone and using Humira instead, which suppresses my immune system and makes me more vulnerable to infection. It also cost about $5000 a month — yay, screwed up health care system! Thankfully, my health insurance covers that cost entirely.
This time we didn’t do those scopes but we did do a CT scan and found that my kidneys are loaded with stones, which is not uncommon for those with sarcoid. None of the are blocking anything at this point, so I don’t feel them, but I have to see a urologist to determine whether I need to have them broken up now so they don’t become a problem later. I’m told that the lithotripsy procedure to do so is quite painful, but I’ve never gone through it.
I’m also going to be doing a test where I swallow a tiny camera in a capsule so they can see into the part of my intestines that the other two scopes can’t see. That sounds pleasant. But we do have a plan for doing outpatient blood transfusions if my hemoglobin drops again so I won’t have to be hospitalized for days at a time. Hopefully that will get me through the time it takes to totally wean me off the prednisone, which we hope will help that ulcer clear up and stop any bleeding from depleting my hemoglobin. If that doesn’t work, we keep digging.
On top of that, the new year is around the corner, which means the clock restarts on my health insurance deductible and maximum out-of-pocket expenses. So between the anemia that seriously reduces my ability to make a living, the cost of replacing my car and the cost of meeting the new deductible and out-of-pocket maximum to my insurance will cover everything, it leaves me in pretty bad financial shape. If you’re inclined to help out, you can do so through Paypal (firstname.lastname@example.org). I’m facing thousands in costs over the next couple months that I really can’t afford.
In the meantime, I’m trying to focus on just getting better. My sarcoid specialist at the University of Michigan tells me that once I’m off the prednisone, I should see a great deal of improvement. I can then get off of seven other medications that I take to treat the side effects of the prednisone, or the side effects of the drugs to treat the side effects. That weaning process will take from six weeks to three months. Then hopefully I can get most of my health back and begin to feel like a human being again. But I’ll always be fighting the sarcoid, which is a pernicious disease that can attack any organ system in the body without warning. It’s already pretty much destroyed my liver. Hopefully the immuno-suppressant medications can keep it at bay, at the risk of not being able to fight off other infections.
Human bodies suck. Intelligent design, my ass.