You gotta be kidding me — this can’t be happening. OK, so maybe it can, but I’m accepting it only with great reluctance. After four days of feeling relatively normal following the paracentesis, my insides were acting up on the morning I was set to be discharged. It was my final day. I was supposed to be in the best shape since my operation, yet it was 8 a.m. and I was back to feeling bloated and trying to muster the energy to get up. And though my arms were mostly back to their normal, scrawny size, my legs and feet (and my long-suffering man parts) were still pretty swollen.
When I finally did get on my feet, I didn’t feel as limber as in previous days. Now, I was OK with having a little discomfort; after all I’d been through, my tolerance for pain had definitely increased. What worried me was that I started feeling queasy, the same way I felt before that horrible incident on Thursday.
This was the absolute worst time for that to happen.
I walked around the room, pacing back and forth with the IV stand, fearing another episode like the “trifecta.” Each passing minute brought on more nervousness, but I was determined to not let this stop me from leaving. It was a race against time, and for once, time was on my side. As I remembered from previous hospital stays — it takes forever to get discharged.
Before I knew it, I was sitting in the chair, watching TV and wondering how much longer I’d be there. My queasiness went away on its own, and my stomach wasn’t bothering me as much. However, though I was feeling better and physically ready to leave, something didn’t seem right. Then it hit me: Duh, what if the ascites returns? The doctors said it was a likely possibility, but no one was talking about having any kind of contingency plans. The surgeon had written me a prescription for Aldactone, one of the two medications I had been taking to help eliminate excess fluid. But it was the lowest dose possible, according to my own research (yes, I was playing Internet doctor); most patients are prescribed three times as much, as well as an additional diuretic (Lasix). So when I was finally discharged, it wasn’t the overwhelming joyous occasion I thought it would be. It just sort of happened.
The ride home was not bad at all, and after being home for a night, I noticed that my recovery was really starting to progress — at first. Though I was able to move around with a lot less discomfort and my pain was not as bad, the swelling persisted. Still, I held out hope that it would go away on its own. But when I woke up Friday morning, it was obvious my natural healing process needed a boost. It was time to intervene.
Because it was nearing the end of the week, I knew I’d have to act quickly; otherwise, I’d fall victim to the weekend healthcare void, unable to contact anyone for help and stuck with the ER as my only option. Here’s where I’m lucky: Though most of the doctors I’ve had seemed to play a sort of hide-and-seek game with their patients, never making themselves available to answer questions outside of appointments, I have the email addresses of both the surgeon and my local gastroenterologist.
I sent an email to the surgeon, explaining my situation and asking for direction. His response wasn’t exactly what I wanted to hear.
“Go to the ER at Jackson,” he wrote, triggering the spam filter in my brain.
Screw that. There was no way I was going back to Miami so soon, not when there are hospitals closer to home that can do the same thing. I emailed my gastroenterologist, first informing her of what happened in the hospital and then describing my current condition. Her response greatly calmed my nerves. Not only did she arrange to have me go in for a paracentesis the following Monday (at a hospital only 15 minutes from my house); she also wrote a scrip for a higher dose of Aldactone as well as one for Lasix, so I could possibly drain some of the fluid the old-fashioned way.
Perhaps I could have waited 12 hours. Perhaps. However, I wasn’t aware of the potency of the two diuretics I was about to take. I got the two medications around 6 p.m. on Friday and took them right away. Whatever sleep I thought I was going to get that night, well, let’s just say I pissed it away. It was like the Pee Olympics. I was up every 30 minutes, and each time I went the urine gushed out like water from a broken fire hydrant.
Ordinarily, I’d derive enjoyment from such constant relief. But my insides were still sore as hell from the surgery, and my back was equally troublesome. Getting up to go wasn’t the funnest thing in the world. It took me a good minute or two of straightening out my back and readjusting my stomach after being cooped up in my recliner. And as the night wore on, it only got more difficult, between the wear-and-tear on my body and the lack of sleep starting to set in.
When I flushed for the final time before Monday’s paracentesis, I had made so much progress it was doubtful there’d be much fluid left at all. Sure enough, only about half a liter was drained. After following up with my gastro doc, we agreed I should stay on the diuretics as long as I was still getting TPN; the fluid from the IV was probably going straight to my abdomen, which is why I felt it most in the morning.
So it seemed I was finally on my path to full recovery. And though I knew I still had a lot of medical stuff to deal with, including a follow-up appointment with the surgeon, I tried to not think about any of that. I needed to take a break from being a patient, which can be like a full-time job, so the day after my paracentesis, I got comfy in my recliner and turned on Netflix. I just wanted to be the old me for a while and not have to answer a dozen phone calls from different people asking the same questions.
Of course, it would have helped had I turned off my phone. I was only about 10 minutes into Orange is the New Black when it rang. It was an 800 number I didn’t recognize.
“Hello, Mr. Budjinski. This is Vera from Jackson Memorial Hospital. I’m calling to see how you’re doing. I understand you had problems with pain management after your surgery?”
Oh, boy. This poor woman, I thought. She was about to get an earful. Fortunately for her, though, I got out most of my anger when I was in the hospital. I ended up giving her a very calculated and thoughtful response. Remember — I’m still scheduled to have a liver transplant at Jackson, as well as the ileostomy reversal. So I’m more interested in educating them than complaining.
“I am so sorry you had to go through all that,” she replied. “Before your next surgery, call me so we can discuss a plan that might work.”
Good. That’s exactly what I had been thinking; I just didn’t know who to contact. Now I do.
I know I’ve been critical of Jackson and its medical practitioners, but that doesn’t mean it was an entirely bad experience or that I have a low opinion of the hospital in general. I could have tried to balance the bad with the good, but that’s not what the story’s about (and it would be a lot longer and less interesting). Also, while the first few nurses I encountered weren’t totally “getting” what I was going through, the vast majority were exceptional, from Julie and her colleagues in the ICU to the floor nurses like Carrie, who, as a Crohn’s patient who had undergone a similar surgery years before, knew first-hand what I was going through. They weren’t just competent; they were excellent, and they really made my days much more tolerable.
Ultimately, I came out of this ordeal a lot stronger and more knowledgeable, and that’s more important than crying over my boo-boos. Because while for some people a total colectomy is the grand finale, the final surgical step in their healthcare struggle, for me it’s only the warm-up act before the main event, when I undergo a liver transplant — a far riskier and more invasive procedure.
And then I get to go through this all over again.
I pray for your continuing recovery. I guess you still need a new liver. I hope it happens quickly, I hope you get one very soon, and that the procedure goes smoothly. I have a very dear friend with Crohn’s but only Crohn’s you are dealing with multiple big medical issues. You write well, maybe you have found your calling. I hope you are doing well currently. We could certainly share some stories. We have scars, we have, still, those in the medical field that should not be there. We’ve been lied to and ignored, it is very frustrating. And that and the stress that puts on our bodies only makes it ALL worse. I wish I could wave a magic wand for you. Thank you for writing though, I am not so alone in what I “battled” have to battle daily now. But I’ll be alright and I know it. I can walk. I hope you’ll be 100% alright. Take care Billy. I’ll be watching your page and remembering you when I say my prayers.