I posting in hopes of getting some input from others who may have experienced port problems (potassium is a separate problem).
This week I developed pain in my chest, armpit and arm that at first felt like muscle strain. Two days later, my neck vein on the side of the port and the vein above my collarbone were suddenly (in a matter of hours) very swollen and very tender. So, off to the ER to check for possible clot. No clot was found, but I hear different things from my ER doc, onc, PCP and surgeon. Onc said I was fine, go home on Advil, but did not see the extent of the swelling. Surgeon says a clot can form along the catheter from the port and not be visible on ultrasound, but to treat this as a phlebitis with antibiotics just in case. ER doc felt that anticoagulants were indiciated, but radiologist says no. PCP says do whatever surgeon recommends. Thank god I'm a nurse; I spent the whole day talking to on call docs to finally get on antibiotics, no anticoagualnts, but Advil, which also thins the blood a bit. What a weekend; still have a neck like a linebackers, but the pain is decreasing!
In the meantime, my potassium levels keep falling, despite 50 mEq's of potassium each day. My first signal that I'm low is I completely lose my sense of taste. I've needed as much as 90 mEqs on some days after checking bloodwork. I'm a little worried that my onc is so low key about this stuff and I'm just worn out from trying to understand and manage it. Any similar experiences out there? Thanks, Judy