Working with my special population I see a variety of diseases in various stages. I've even been privy to seeing things I only thought I'd read or see in a textbook. Some disease processes don't show any outward signs and others are easy to spot as the disease ravishes the body.
Hepatitis C (HCV) is something I see daily, complicated with cirrhosis or other diseases, or just good old Hep C. There's really nothing much to do about it while in my care, feel for liver enlargement and check for yellowing of the skin (jaundice) or the sclera (icterus), encourage refraining from using Tylenol and alcohol, and education on how to prevent spreading the disease. Most of the population I encounter are relatively healthy Hep C'ers.
Around when I first started working, I encounter a patient with increased fatigue, easy bruising, no known history of HCV (to me) and some long ago history of thrombocytopenia which ultimately wasn't worked up because although low, not low enough. So now, with a Lo PT/INR and again thrombocytopenia and anemic and leukopenic (around 2.2), a trip to the hematologist/oncologist was in store. Well long story short, a CT scan and more blood work turns out the advanced liver disease is complicated by the HCV onward to a hepatologist, meanwhile, increased bruising and pallor. And here is where the plot thickens.
Now in any normal population, regular clinic, one would think a referral by a specialist to a specialist would result in an appointment with that said specialist, unfortunately I have learned that some specialists aren't interested in helping my special population even to go so far to refuse to schedule an appointment for a patient, and even canceling an appointment saying "there's nothing we can do for that patient, that patient should just follow up with the OHSU transplant team whenever they get released". Unacceptable. After the administrative asst. went to bat for me, telling the specialist they in fact needed to see the patient just to tell the patient themselves, and sure enough patient shows up and phone call saying, patient doesn't have an appointment. Again - cutting to the chase, I make nice with the receptionist, apologize for any miscommunication, but our records indicate an appt to tell answer questions for the patient and break the bad news that the patient needs a new liver. "They are taking the patient back right now" Relieved, I go about my clinic day until... the patient returns and there are no orders, no recommendations and the specialist didn't even bother to take the patient's history and information sheets they required the patient to complete. A quick phone call to speak to the provider and figure out what was said so I can be in the loop to talk to my patient. 4 hours later I am on the phone with a spineless PA with no confidence telling me yes there's a referral been made to OHSU, but would have to check with the receptionist for sure because she makes the referrals - whoa, brakes! I ask, so the receptionist actually makes the referrals, after much mumbling and stuttering, the PA further goes on to tell me that they didn't even bother making a chart note, as it's not their responsibility as far as they are concerned at that office oh and by the way, turns out no referral to OHSU and also told the patient they need to go see another specialist. Gee, thanks a lot for basically avoiding our patient and passing the buck. I should check that they didn't charge us for the no-chart note, no doc talk to the patient in the supply room visit.
So now, this once relatively healthy Hep C'er is slowly dying, needing a new liver, if OHSU even approves that person. I have seen the jaundice set in, increased pallor, fatigue, petechiae, loss of appetite and now, the swelling, eyes so puffy they barely open. Although this patient has made life choices for which there are life threatening consequences, it's still my patient, someones child, sibling, friend, I put forth my time and effort, couldn't the specialist (who is assured to be paid by my tax dollars) have a little respect for the person too? And if I could replay the conversation with the PA - I was dissapointed, ashamed to call them my collegue. No compassion, no care. And I may not be concise in my writings, or articulate to explain my disgust but I truly believe that any of my classmates would be advocating for their patients too, whether they come from a small town, a large clinic or satelite facility.
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