Thursday, February 23, 2012

My denosumab injection adventure

Today was the first day that I received the denosumab at home from the home care nurse. I knew that it would be fairly easy to do the actual injection since it's just a subcutaneous injection but it's something I can't do myself. Apparently the home care people only come for three visits and those visits are used to teach the patient (or someone in the house) how to do it. Ian has said that he'll learn how to do it since I don't do needles.

I saw a substitute oncologist in December and she wrote the order, or request, for the nurse to come to the house today. Up until yesterday I'd heard nothing from the nurse so I called the pager number that I had from before. When I hadn't heard back from that nurse this morning, I called the local Community Care Access Center (CCAC), who coordinates this sort of thing. The receptionist I spoke to was very helpful; she transferred me to an intake person right away. That person looked at my information and said that my chart was closed and there were no new orders there.

So I called the oncologist's office and told them that they the CCAC had no orders for me. At noon, two hours later, the oncology nurse called and said that they'd straightened everything out. Apparently the CCAC (or Care Partners, the nurse's actual employer) had misunderstood the order. For some reason, someone thought that they couldn't do the injection.. and told no one.

I waited a couple of hours and called the CCAC back. This receptionist wasn't at all helpful; she told me that I needed to call someone named Angela at Grand River Hospital back because she coordinates the case managers (who coordinate the care). I was very, very frustrated by this point because this whole thing was stupid and I was the one who was trying to get this done instead of the CCAC. The receptionist finally put me on hold and asked someone else what to do. She came back with the best possible answer: she would call this Angela at the hospital and have Angela call me back.

About an hour or so later, a case manager called me back and we got things working. I needed syringes and this person got them rush ordered for me. She asked me to call Care Partners once I picked up the syringes so that they could arrange for a nurse. The nurse that showed up was from a completely different area and was pulled in to do the work because the nurse for my area was too busy. She checked the number I called last night and it was correct so that nurse should have called me back.

Had that nurse called me back yesterday telling me she had no idea what I was talking about, today's clusterf*ck wouldn't have happened. Why on earth didn't the person who said they couldn't do this injection tell someone? If they did, why didn't that person tell someone else? Why didn't they try and fix the problem or question the order or be proactive in any way instead of basically sitting back and waiting for someone else - namely, me - to light a fire under their butts? I am not impressed. Even though it all worked out in the end, there was no reason for things to have been as messed up as they were.

I dread trying to get them doing port flushes. After this experience, the less I have to do with either the CCAC or Care Partners and the apathy they exhibited today, the better.

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