There’s an element of tempting fate when you start talking about discharge from the BMT unit. At the beginning of last week, the team started to estimate a Friday release date for Justin, we were finally talking about going home again. A little more prepared this time, we were nervous to take this show on the road, but he was feeling better and we knew what it would take to be home. Ah, Home…
Recovering from GVHD of the gut is a slow and boring process. Justin’s diet was increased day by day depending on how he was handling certain foods and medications. By Wednesday evening he was moved to the GVHD 2 diet and all of his medications were moved from IV to pill form. Thursday was about moving around the unit and monitoring his progress in the hopes of going home the following day.
And then Thursday happened. Justin started Thursday morning by realizing one of his favorite nurses, Annie, would be on his service for the day. She came in through the curtain with arms her arms in the air like she was part of the Showcase Showdown on The Price is Right. I was so happy to see her. Annie was the nurse that administered Justin’s transplant and we hadn’t really seen her since, she was such a big part of how special that day was for Justin.
It took less than 30 minutes for all of us to realize something wasn’t right – Justin was experiencing pain in his abdomen, more nausea than usual, and Annie was beginning to see blood in his stool. This is definitely a cause for concern with GVHD of the GI tract. The team came in for rounds and started discussing causes, tests, and treatment plans. Justin was heartbroken. A day that was supposed to be about last minute monitoring before leaving had turned into pain management, test preparation, nausea control, and back to a “nothing by mouth” diet. His doctors seemed almost as crushed as we were. Almost.
There were four theories on the table for the quick change in Justin’s stability, some much scarier than others:
Theory #1: The blood thinners that were switched from injections to pills could have caused the bleeding. (Justin has a blood clot in his leg, otherwise he would not be put on blood thinners while his platelets are already low). This is the least scary option.
Theory #2: There could be an ulcer that began to bleed. This is the second least scary option as an ulcer could be cauterized during his colonoscopy.
Theory #3: There are two viruses that we all have inside of us that only become active when your body is immunosuppressed. Between the Immunosuppressants and the steroids Justin’s numbers for a virus called CMV started to increase – not anywhere to the “level of concern” but they were increasing. This virus can cause sores in the GI tract and those could be causing the bleeding. This is the second most scary option as this virus can be resistant to medications.
Theory #4: Justin’s GVHD got worse and the steroids he was on for the week just masked it instead of treating it. This was the scariest option.
In order to have a clear idea of what theory was actually causing the bleeding and pain a full colonoscopy needed to be done, quickly. Thursday evening soon became about colonoscopy preparation for an early morning procedure. Around 7pm Annie brought in the jug of prep solution that Justin needed to finish before midnight. One sip in and we knew this was going to be a long night.
To make a long (and disgusting) story short – Justin’s procedure was pushed back to Friday afternoon so that he had ample time to prep. Every time we thought we were in the clear (pun intended), he was instructed to drink more. It took him 18 hours to drink over 6 liters of colonoscopy prep fluid. By the time he was ready to go we were both exhausted. They wheeled him down at about 3pm Thursday afternoon, after which Annie put a “Do Not Disturb” sign on his door and instructed me to sleep. I didn’t argue with her.
With no obvious signs of increased GVHD or an ulcer to cauterize during the procedure, Justin’s team started running with Theory #1: the blood thinners caused some issues. They scheduled a second procedure for Friday morning to have a filter placed in the vein leading to Justin’s lungs to keep the blood clot from traveling and causing any issues.
Justin really does have the best team with him, by Saturday afternoon his PA, Brittany, was pushing for answers from the pathology department. She, like us, was not interested in waiting until Monday for results. Preliminary readings determined that his GVHD, while present, was no worse than it was a week ago – our highest concern had been scratched off the list. Later in the day she came back with more news – pathology reported no signs of the CMV virus, the second scariest option was also off the table.
By this morning (Sunday), all of the reports have come back and his team is confident that it was the blood thinner medication switch that caused the bleeding. The switch from an injection to the pill form was prompted by our insurance company who would not approve the shots until various pill forms of the medication were attempted. Brittany assured us that this would no longer be a problem – she said so with a big smile on her face. I know, without a doubt, that she went to battle for us yesterday.
After a horrible Thursday and Friday filled with colonoscopy prep, the actual procedure, anesthesia medication induced sleep and a Saturday of filter placement followed by more anesthesia mediation induced sleep, Justin is awake (well, here and there) and looking better today. His diet was advanced off of the clear liquids back to GVHD 1 – which means he gets his beloved sliced peaches, rice, potatoes, chicken, and broth. His growling stomach was overjoyed to have a breakfast of applesauce and peaches.
At this point, the plan is to slowly get Justin back to where he was on Wednesday: advancing his diet and taking all medications in pill form. I hesitantly asked Brittany today when we might be looking at discharge and she hesitantly projected the end of the week. She and the doctor both laughed because of how last week went, but they are confident that they have pinpointed the issues that dictated this extra week’s stay.
Today marks day +30. Justin has officially been in the hospital for five weeks and two days. He was discharged once, readmitted, and 24 hours away from a second discharge. To say this process has been an unexpected rollercoaster would be the understatement of the year. Thanks, as always, for your support – I am hopeful that soon you will be getting updates from us at home.