Guinea Pigs Needed… ANY TAKERS? MG and Iron Injectafer Treatments Gone Wrong


I learned a hard lesson last week. So my hemotologist did a routine check after I stabilized and I no longer have anemia. However, they decided that as a preventative measure they would give me an iron injectafer which is really a fancy way of saying IV iron. It’s a 2 step process. You come in 2 times a week apart for 1 does of iron each time via IV and the actual dose of iron given takes only 15 minutes. It should last you at least 3 months if not a lifetime if you are not losing blood anyway in large amounts which they do not think I am anymore. I have had it before when they first were stabilizing me when I was still anemic so I knew what to expect…or so I thought.

Well I did my first of the 2 Injectafers last week and then went to get my unexpected plasmapheresis treatment the next day due to me not feeling well last week because I had sinus issues and overdoing things. The treatment pulled most of the iron right out of my body because it had not really had much time to absorb. No one knew this would happen apparently. I told the nurses at the hemotology office and where I get my plasma exchange and no one gave any warnings (which they usually do if they think there is a problem). So that was kind of a waste. The waste bag of my plasma was full of the iron I just received the day before. That was some expensive ‘waste’! So for this week I learned to reschedule it for after my plasma treatments are complete and now both parties know that for a person with MG and iron treatments this will happen. I was their guinea pig.


Jumping At My Shadow


There are times that we feel most confident and then there are times that we are at our most vulnerable and sometimes for the silliest moments of doubt and we pray no one saw us jump at our shadow! I have to admit I have been having a few of these moments lately. Not the I have been watching scary movies and you walked up behind me and scared me to the moon and back moment but the did I see something peeking from around the corner of that wall just a second ago moment…(and more importantly did you see it too).

We all want to validated in these moments and then we feel better. However, when we are not we feel even more vulnerable, or dare I say off kilter. The worry comes from a bit of anxiety of past issues and not really trusting if I am getting better with my MG, my tracheal stenosis, and with my anemia, among other things. I start to wonder if these things are coming back when in fact they usually are not it is just stress playing tricks on my mind or causing me to have a slight exacerbated symptom for a short period and giving the illusion of such. For example, MG causes breathing or swallowing difficulties as it is so it can e hard to know if I am having an issue with tracheal stenosis or narrowing of the windpipe at that time which I had surgery to fix. I get nervous wondering if it was actually fixed. However, when I am calm my rational mind says, you have not had any real problems like before and you have been able to breathe just fine. It is like just your MG having a bit of a flare with stress and you have an appointment for your follow-up for the tracheal surgery next week so RELAX. But that is easier said than done, lol. But I have to have these little talks to help myself. I have to pray often. But sometimes I feel as though there is something creepy lurking around that corner just in my peripheral and I wonder if anyone else saw it! I just want someone else to say yeah, but then when it’s nothing I’m like you didn’t see anything so why did you say yes? LOL (but secretly I’m glad that they were on my side sometimes, hehehe! Luckily I know who to go to for the real truth and the bandwagon truth.