Last Saturday, I was admitted for TPN. It was administered through my PORT starting Sunday evening and things seemed to be going well. I had a little more energy, could think more clearly, and began to get a little hopeful.
Discharged Tuesday, I then started on the TPN delivered from an outpatient infusion company which was supposed to be a similar formulation. However, in the middle of the night, I began violently vomiting and fluctuated between having chills and sweating. My mom called our home health nurse Abby (she is fantastic, super compassionate). Abby saw me quickly and seemed alarmed by my vitals. So back to the hospital I went.
The biggest priorities in the short term are nutrition and making sure we have a TPN formulation that works. Also, we are waiting for my blood cultures to come back to see where I stand on infection (have been on antibiotics for 4 weeks).
The long-term priority is to figure out the reason behind the excruciating middle abdominal pain, especially under the left rib cage (15 minutes after eating/drinking anything orally or through the NJ tube). And, to better understand why my stomach blows up like I am 4 months pregnant when I don’t have a way to drain it through the GJ tube (GJ tube had to be removed during the MALS surgery and must wait 2 months before placing it again). The MALS pain (epigastric) remains gone and I continue to be very pleased I had that surgery.
My experience was that TPN support in the outpatient setting was simply not there. My parents and I were nervous that there was no established plan for transitioning off the TPN. And, there seemed to be no dietician or nutritionist involved for counsel.
Complex illnesses are tragic for a patient in a fragmented system. There’s no one to blame and everyone to blame.
No doubt, total parental nutrition (TPN) can be lifesaving, but it can also be a total patient nightmare, as it was for me Tuesday night.
