-
I have gMG and oMG which means 2 days a month of IV/IG, plus 2 days a month of an infusion of Ketamine, as I participate in a clinical trial at my VA hospital. So you might think, hmmmm, 4 sticks a month….not so bad. I wish that were true. Unfortunately, I am one of those, “Difficult Sticks”. I have rolling veins so they tell me. Getting access to vein can be a major challenge. It once took one and a half hours to finally get a vein and then during the hour long infusion of ketamine, the needle popped out of my vein but stayed subcutaneous which resulted in a subcutaneous bubble, the size of a grapefruit. Not fun.
So, my care providers have been on my back for a long time trying to get me to agree to get a port. I have resisted due to fear. All of the fears that everyone (I believe) who has a port has dealt with before agreeing to get one.
I had hoped to see lots of negative feedback about the port in this discussion chain. I was a little shocked because those negative comments, for the most part, didn’t appear. That doesn’t mean that I have decided to get a port but I will invest more time and effort into getting a broad range of opinions, especially in the medical literature. To date I have resisted putting that effort into my “research project”. I will now do so.
Ari Maayan, PhD