Sometimes you have to speak up

My brother got a call yesterday from my rehab place, inviting him to a care plan meeting next week for me. Problem is that I’m my own power of attorney and no one had invited ME to the meeting. In fact, no one had told me much of anything about how this practical end of things actually worked here. I’d never met the social worker or had anyone explain about care plan meetings or even care plans. None of the others on my hall had those, either. Even simple things like how laundry gets done were never explained. This is not okay, and I was not happy. Not about the laundry but about meetings to plan MY care with my emergency contact invited but not me. So I spoke up.

I spent large parts of my working life dealing with high level problems involving staff, budgets, systems, and/or materials, and many hours of that time were spent talking with people who left things unsaid or undone. The key is to keep calm, be clear, not get personal, and have your facts in order. If I could deal with Thompson West, I could deal with Meadow Lake.

I found the Director of Nursing to ask what was going on, who was this person and how could I meet her, and what was the care plan meeting about. And was there an expectation that I would be terminated as a patient here when my 30 day initial stay was completed. I also cornered, er, discussed this with my physical therapist. I was still not happy.

Then someone called an MDS Coordinator came to my room to see me. Apparently she is important and the one who oversees these things, as well as the social worker. I’m all for turning difficult situations into teachable moments, and this situation provided one to explain the obvious point that you check with the patient before you call the family. I had a chance to explain what my concerns were, and I got an apology right out of the gate.

I’m comfortable now with a care plan meeting next week that will result in some extended time beyond the initial 30 days; the company that owns Meadow Lake requires that each admitted patient have an estimated discharge date, which can and is adjusted depending on progress. Although I was admitted with a 30 day estimate, that will change with reports from therapy about their goals and plan for my progress. I probably will not need to stay until November 1st, but I’m also not going to be ready to go on October 1st. Somewhere in the middle.

My brother doesn’t have to come up for that 20 minute meeting. That’s just silly and a poor use of his time, since I can and will speak up on my own behalf.

While I Was Away: The Good, the Bad, the Awful

Quilt Made of the Conference Logo by My Friend Phyllis

I haven’t posted here in quite a while – deliberately, for the most part.   It was actually very relaxing to not have to worry about coming up with words when I didn’t feel them.  But that doesn’t mean that things stopped.   Here are the highlights.

The Good
I spent the last 18 months working as chair of my national association’s annual meeting & conference.  It was lots of fun but at the same time, an enormous amount of work at a time when I was moving into and learning my new position at my paying job.  Everything came to fruition at the annual conference in Philadelphia in July.

It was wonderful!  Simply wonderful.  Everything I had worked and hoped for came together in what I’ve heard some people call the best educational programming in years.   Our meeting had no theme, just the best programs we could put together, and I think that not having a theme actually worked in our favor.   Poster sessions were a part of the meeting for the first time, a suggestion made by one of my committee.

And our keynote speaker, Dahlia Lithwick, was a breath of fresh air.  Instead of starting in by telling us how much she likes libraries and librarians, she launched into an animated, insightful, and humorous address about the Supreme Court and freedom of speech, both within the Court itself, between the Court and the press, and on recent decisions.  We’re law librarians – talk to us about the law!  She did and it was great.

The Bad
A month ago, after three months of mild to growing concern and discussions with the plastic surgeon’s office, I finally learned that those funny lumpy hard places on my left incision line were actually abscesses from popped stitches.

How did I learn this, you ask?  By ignoring the “you’re still getting used to your ‘new normal’ post-op body” messages from the plastics’ office and going to the university’s Acute Care center when I noticed blisters were forming.  I left with strong antibiotics, instructions to apply warm moist compresses, and to return in 2 days.  By then the abscesses had started draining.  They actually still are, a little bit.

I did go back to see the surgeon’s office with a sort of “screw you” message:  I told people for months something was wrong, and no one listened to me – and look, there was a problem.

The Awful
Not only did I have abscesses, it seems I also had been harboring an infection in my lapband port area for almost three months.  I’d reported a swollen belly several times to the plastics people but heard back that “it’s your new normal” thing that I was starting to hate.

When I lay down in bed and ran a hand over my tummy, there was a visible and tangible lump where the lapband port was.  But stupid me assumed that post-op my port was just closer to the surface and therefore more noticeable.  However, when I got to Philly and saw myself in passing in one of those hotel mirrors, it looked as though I had a second belly button:  the area around the port had swollen up around it.

Something was clearly wrong, and at the urging of a friend, I called the lapband doctor from Philly.  They wanted me to come in the next day which was impossible since, uh, I was in Philly.  But I was in the office the following Monday morning.  The surgeon took one look at it, and at me, and said, you are having surgery tomorrow.

However we sliced it, the lapband port had to be removed.  The entire band & tubes might have needed removal as well, if an endoscopy showed them to be eroded.  I was lucky and it was just the area around the port that was infected – and it was badly infected.  The doctor told me they removed about 1/2 cup of drainage along with the port.

I now have an open wound in my belly about 1.5 inches wide and 1.5 inches deep.  It has to heal from the inside out so I have home nursing care to do wound care & change the dressing every day until the wound doesn’t need to be packed anymore.   It’s sore and tender and I was out of work for another week post-op.  Not in the plans  but necessary, I know.

Lesson Learned: 
I am responsible for the whole me, who knows when something is or feels off.   Just talking to a doctor or doctor’s staff doesn’t mean they are looking at orfor the same things that concern me.  If I feel ignored or simply want another opinion, find another doctor and ask – even if it’s back to the primary care doctor who sent me to these people in the first place.