There’s only one thing people want to talk about less than cancer and that’s the ICU. Shortly after my last blog post in February, my husband ended up there. I always thought being sent to the ICU was the “beginning of the end”, but I was wrong. The Intensive Care Unit saved Jeff’s life. Now I want to sing their praises. Literally, with ‘Private Eyes’.
“I.C.U. and you see me… They’re watching you.” How comforting! They’re watching out for you. So closely.
Let me back up and tell you how we got there.
Something no one warns you of is how, post chemo, your veins can get a little…leaky. I don’t want to be too graphic (novel) here but did you see the first X Men movie? Do you remember what Magneto did to Senator Kelly? Do you know how much I hate myself for using this reference? Senator Kelly went from 70-ish% water to 100% water and that was the end of him.
Chemo can cause fluids to go to places they aren’t supposed to go. Sometimes the fluid will cause your legs and feet to swell. It can also end up somewhere dangerous, like in your lungs. Sometimes the water will go straight past your kidneys and your body will believe you’re dehydrated, causing you to drink more water. The cycle continues.
This is what happened to Jeff. He hadn’t been eating well post transplant yet he also hadn’t lost any weight for weeks which was confusing. We didn’t know he was carrying around 20 pounds of water weight around his organs. They warn you that transplant patients can lose or gain weight because of changes in metabolism, so we chalked it up to that. It’s an incredibly insidious thing. More insidious than the amount of Insidious sequels that exist (give it a rest Hollywood). Even now, with Jeff no longer retaining fluid and eating enough to feed a family of four, he’s still losing weight. Most of our conversations are like this now:
So, one morning Jeff wakes me up with chest pain that’s a 5 out of 10 and it quickly progresses to an 8 out of 10 and I call 911. When we get to MD Anderson they do some scans and his lungs are full of fluid. They do a thoracentesis, which is just a Harry-Potter-mythical-creature-sounding word that means they took the fluid out of his lungs. They did this by – how do I explain this technically – punching a hole in his back and putting a suction tube in it. They got a couple of liters (!!) out and he was able to breathe without the chest pressure… temporarily.
That’s when his lab results showed abnormal kidney function. It suddenly plummeted. Our doctor came in to tell us he’d like to send us to the ICU but that it was “precautionary” – not that he needed it immediately, but better safe than sorry. I remember thinking, “this is what they tell everyone I bet”. I was numb. Jeff wasn’t protesting. I knew that was a bad sign.
Let me be honest – the walk to the ICU feels BLEAK. It’s always tucked away from the higher traffic floors. There’s even a special elevator to get to them. There are less windows, if any. The rooms are small and cramped with all sorts of machines. There’s only a recliner, unlike on the regular floors there’s at least a bench to sleep on. I’m actually still confused by this, considering the ICU seems like the place you’d be much more likely stay overnight as a caretaker.
As a side note: I am a terrible sleeper and I can’t sleep unless I’m completely flat. In the ICU I ended up shoving my suitcase in between the recliner portion and the ottoman so I could lay down. It worked perfectly. I highly recommend.
It was around midnight when they transferred us and I couldn’t help but pay attention to every single detail. Patients hooked up to breathing machines, unable to move. The doctor asked me to go to a waiting room while Jeff had an arterial blood pressure line placed in his wrist. It seemed painful and he seemed so out of it (they wouldn’t give him pain medication for fear his blood pressure would get dangerously low). I was so worried that I lasted in the waiting room for about 10 minutes before I was right back outside of his room. He could look out at me through the glass doors while they did the procedure, but I knew I was blurry to him without his glasses on. I just kept making a heart with my hands at him like I was in a stupid Taylor Swift music video.
It was all I could do and I LOST IT. I moved around the corner where Jeff couldn’t see my blurry figure and collapsed on the floor. His nurse happened to just be coming out of the room to check on the dialysis machine when he saw me. He stopped, knelt down and said, “Everything is going to be okay”. He got right back up, helped me into the room, and then assisted another nurse in lining up the 100 or so clear bags needed for the dialysis machine (I wish I could explain what these were for, but I have no idea. Still today I’m convinced dialysis machines run on magic).
I found the nurses in the ICU to be the most empathetic, strong, tactful people in the hospital. They were always aware, walking a fine line with their interactions: not too jovial because the place is a constant reminder that people die, but also not despondent because people are trying to cling to any trace of hope. This just a small layer on top of their many daily actions that make a difference between life and death.
I don’t know how much time I spent thinking about the lives of ICU nurses. It’s amazing what the brain does when simultaneously in trauma and void of stimuli. I don’t even remember Jeff looking as sick as he did at the time. I was like the Shallow Hal of health. I’m pretty sure this was my brain’s way of protecting itself.
Jeff remembers very little of any of this. I had spent most of my time worried about the amount of pain he was in to later find out that his brain was also protecting him. The extreme stress on his mind and body took him to a dream like state where all he remembers is thinking he was on a train with me.
Over the next two weeks Jeff had:
- a groin catheter placed for dialysis
- a drain placed in his heart for pericarditis
- his picc line replaced
- an endoscopy and biopsy to check for GVHD
- around the clock breathing treatments
I made a lot of Top Gun references. It was my excuse to call him Goose.
After his kidneys normalized, we were transferred back to the transplant floor where we spent another two weeks. We were discharged from the hospital in mid March after a full recovery. What transpired was something known as Multisystem Organ Failure and when it happens after transplant it is, more often than not, the cause of mortality. We’d been on the lookout for something like sepsis, not something as simple as excess fluid. We now know how important it is to carefully monitor fluid intake and output after chemo, but especially after myeloablative conditioning.
Jeff and I celebrated with a big ceremony on May 13th – it was the goal line we’d set at the start of transplant. Because of MD Anderson’s ICU team’s care, we made it. We are day +160 post transplant.