Holy buckets! Today was a packed day! It started with the smoke detector going off at 01:55 this morning and my debating for about one minute if I really wanted to wake Gary and Barbara as they said to. Before I finished debating, it had stopped so I went back to bed and then told them in the morning. Ultimately, Gary took the heater for the boiler apart and there was a piece of fire board (or something) that had crumbled on one end and he thinks that is where it was leaking. We now have our basement open to keep the exhaust from building up. This is a little worrisome because Terry is allergic to cats, the cat they have already is a poor mouser and we already have problems with mice every winter. Hopefully nothing larger will decide our basement looks comfy. There are raccoons, skunks, 'possums and woodchucks in our neighborhood.
The next activity was dog barf and I won't dwell on this more than to say I was worried at this point that the day was going to be really lousy! Fortunately, it turned around once I got to Manchester and got my labs. My platelets were 53 (which is higher than the 20 transfusion threshold so no transfusion), my white count was 1.05 with an ANC of 130 (too low for real food, but clearly higher than the previous 10 so next time!) and my hemoglobin was 9.0 (transfuse at 8.0 so no transfusion here either). This is tremendously good news because it meant that I could spend the day having fun with Emily instead of sleeping while she read. The other funny thing about my labs is that I drank a ton of water on the way in so that my veins would be as plump as possible. This diluted my potassium, hemoglobin, albumin and BUN. I have to figure out how to be well plumped but not too well plumped.
Emily and I then went to the Currier and then lunch with Eva at the Bridge Cafe (soup and a grilled cheese for me--soon one of their fabulous salads) and then I took Emily home and went to therapy. I had set myself up to see my therapist when I was in marrow failure depression mode, but decided it is not a bad thing for people with leukemia to talk with their therapists regularly so I kept the appointment even though I had recovered my marrow and my mood. It was nice to see her and she always has lots of practical ideas so I appreciated talking with her.
On my way home, Terry called to say that he had to go to the ED so I accompanied him there. He's fine, and says that I can tell you the story.
All his life, Terry has had horrible veins and last spring he got some pretty extensive vein surgery which really improved things. Then he got an infected clot in early June and some of you may know that one week prior to my diagnosis, Terry spent a few days at CMC getting IV antibiotics and hoping to avoid more vascular surgery (it worked). He recently took a driving trip to Nova Scotia and returned with a superficial clot and a unilateral swollen leg. His vascular surgeon's nurse told him to go to the ED and make sure he didn't have a DVT. He didn't, they gave him antibiotics and sent him home.
Which finally gets us to the part of the story I wanted to talk with you about. What happened is the nurse told him he could leave, he got dressed and we awkwardly walked out of the ED, nobody particularly said "goodbye" to us or thanked us for coming in or did the very tiniest ritual that would make us feel like the ED visit was over. It was as though we went to some one's house and said "good night" and they walked out of the room, leaving us to find our coats and the way to the door. I had exactly the same experience when I left Leb as well that the nurse pulled my PICC and I finished getting dressed. We picked up my stuff and wandered off. I felt like there was no official closure from the hospital staff. It felt as though once I was discharged, they lost interest in me. I know from being on the other side that hospital discharges are somewhat awkward experiences for the doctors; I always feel afraid to spend much time with the patient I expect to discharge because I worry I will turn up other reasons they need to stay. I wish there was some sort of tiny ritual we could do to make a clear transition between now you are a patient here and now you are out in the world.
In the clinic, it is so much easier; I say "thank you for coming in today; I'll see you in [time period]; please take this up to the secretaries and they'll set up your appointments" and gesture invitingly to the front desk. I think it is awkward in the hospital because patients may get dressed in their own clothes at the very last step just before they leave (I did in case I bled when they pulled my line). The nurse has probably already given the patient their prescriptions, paperwork, appointments, etc. and to have the nurse wait around to re-interact with the patient for a nicety rather than a necessity must feel like a waste of time. And yet. There was probably a time when discharge instructions felt like a nicety and not necessary.
Patients who are non-ambulatory get wheeled to their ride and thus get an official goodbye. I wonder if having the nurse come in and look around the room with the ambulatory patient quickly while saying the "thank you for coming in" phrase would be helpful or not. Or perhaps the nurse could return and say thank you while directing the patient to the exit.
I wonder if anyone else has this unbalanced sense at the time of discharge or if it is only me. Please let me know your experiences.
Well, I'm off to a happy platelet, go marrow, go! bedtime. I hope tomorrow is a good day for all of us.