An Interesting Few Days…

It’s been an interesting few days since I got home from the hospital Sunday afternoon.

As I mentioned on Monday, I had my first pain Monday afternoon – right around 3pm to be exact. It started as a little tinge – a surprising – arresting, even – reminder that I needed to rest.

I went to bed – determined to rest. And I pretty much crashed.

I needed the rest.

Tuesday morning I woke up pain free – relieved. Ah ha! So rest WAS the key!

An hour later the pain came back. Not quite as subtly as it had come the day prior. I determined to be more regimented with rest. The “rest police” (my boys) did a really good job of nagging, bossing, and generally making sure I got some structured rest in.

The rest was good, but the pain did not subside.

Wednesday morning – after a more than decent night’s sleep and structured rest of the day prior – I awakened with pain. More than the day before. I took my temp. 97.3 – pretty normal for me. I relaxed a little – phew – no fever!

As the day progressed – so did my pain level.

I finally determined about mid-day that I was going to need to tell John what was going on when he got home. Its funny how liberating it is speaking the truth out loud is to someone you love. We had a fairly logical conversation about what should be done. He asked me why I hadn’t told him sooner or called the doctor yet. I explained that I wanted to wait until the next day (today) to decide whether it’s still escalating – or not. He said okay.

I love that he loves me so kindly and gently and compassionately and graciously.

So this morning I got up.

Monday at 3 pm I’d call my left shoulder pain on the 1 to 2 level on the 1 to 10 pain index scale.

Tuesday later in the day – at the 2 to 3 level.

Wednesday early evening – 4 to 5 level.

Thursday morning? 6.

I called the doctor’s office this morning and left a message. I know my surgeon (the fabulous Dr. Zelko) is out of town until next week. I also know his partner Dr. Jamison well – he saw me the most this last time I was in the hospital, so I left a message for both of them. Brittany, the wonder MA, called me back this afternoon to explain that yes, Dr. Zelko was out of town, and yes, Dr. Jamison would be happy to follow up with me – but was in surgery until evening hours. She felt he’d try to call tonight if at all possible, but tomorrow would be probable.

So I’ve spent some time contemplating stuff.

When they discharged me we talked a lot about the potential things that could happen.

I’d be all healed up from everything and merrily go on my way – not a moment’s discomfort to be borne related to all of this ever again!

I’d be all healed up for the most part – the leak, the fistulas – dealt with, healed up – no more communication between ingested matter and the abdominal cavity, but… abscess might act up again. Simply due to the fact that new bacteria could have grown that the antibiotics I was on previously would not adequately address.

Or some elements of none of the above.

Pretty much – as I may have mentioned previously – this is a brand new procedure they did on me. It was being posited as a possibility as a procedure less than a year ago. The first instances of published results happened only a month ago. They’re making stuff up as they go along – because no one really knows for sure what will be the outcome.

My shoulder pain – which I’ve lived with pretty much consistently since late April – indicates referred pain from the gut. The more severe the pain – thus far anyway – the more the abscess has been acting up. (And can I just say right here and now how blessed it was to have that little season with NO shoulder pain?! I want that back!)

My hope – obviously – is that this is just abscess. That could mean a CT in my near future. It could potentially mean a trip to interventional radiology to get a follow-up tap to try and culture the goo that could be there. Could potentially mean re-hospitalization. Could potentially mean a new PICC line – three of the bacteria present from my first tap and culture couldn’t be touched by oral antibiotics – hence, the initial need for the PICC and IV antibiotics; and of course, more IV antibiotics.

Could, maybe, possibly.

I’ve decided to stop trying to self-diagnose – while still maintaining my need to advocate for myself – and rest, and have an intelligent conversation with the doctor tomorrow.

One thing that I haven’t had before now is the underlying tremors or shaky feeling that I seem to get this time out. I honestly think it’s because I’m just so stinking run down and tired and have been so sick for so long. Brutal fact: I’m weak.

Hence, my decision to not try and ignore it and see if it will go away.

Who knows? Maybe I am growing up a little bit!


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