Like many pALS, I had a chest port surgically implanted to facilitate monthly infusions of Radicava, which is a therapy that appears to slow disease progression down for some people with ALS. I had mine implanted in fall of 2018. In March 2020, a topical infection – just a pus pimple – appeared at the injection site of the port during treatment. That happened two more times over the summer. Each time, it was diagnosed as a topical infection, I was given antibiotics, and it quickly cleared up. But the recurrence was troubling, and my neurologist and I agreed that if it happened one more time I should have the port removed. The concern was that if the infection made its way into and past the port, it risked becoming a blood infection, which could lead to sepsis, which is life threatening.
One evening in late September I was watching television when I suddenly began shaking, got very cold, and started having trouble breathing. The shaking was uncontrollable. After ten minutes of this we called 911. Long story short, I ended up in an ambulance, the ER, and then four days in the hospital with a blood infection. I was completely exhausted by the episode, and felt miserable. Luckily the antibiotics worked to clear it up and it never developed into sepsis. The doctors suspected that the chest port was the source, and so we had the chest port surgically removed, and I am now done with Radicava treatments. Time will tell if going off Radicava impacts my ALS progression. For now it hasn’t. The lesson for me was that each person living with ALS has to make a decision about whether the anticipated benefits of Radicava justify the infection risks of a chest port. For me, the risks got too high.
Ken's Caucus 