ON WITH MY LIFE

So now I’m home.  Now what?  The doctor at Rush had decided that in order to keep me maintained with no relapse, I should receive IVig infusions every three weeks, for two days in a row.  I was relieved to discover I could do this at my local hospital and not have to drive a long distance.  It was 10 minutes away.

 

The three weeks passed, and I was scheduled for a Thursday and Friday in Outpatient Infusions on the 2^nd floor of the hospital.  We showed up, were taken to a room and waited. We were there maybe 5 minutes before someone from the pharmacy came in an informed us my infusions were not cleared by my insurance yet.  I was very upset.  This was all very new and scary and I had no idea what would happen if I could not receive my treatment.  They sent us home with the hope that it would be cleared up that day and I could come back the next. I have mentioned previously my love/hate relationship with insurance companies.  This would not be the only time it came down to the wire to get approval for my IVig.  Only so many are approved at one time and each time they had to be renewed there seemed to be hiccups. I was set up to be under the care of an RN at Illinois Neurological Institute since my doctor at Rush was not covered under my insurance. I even sent an impassioned letter to my insurance requesting my doctor at Rush to be approved, but their response was there plenty of good neurologists in network and just NO.  But INI  had no privileges at my local hospital so anything the RN ordered, my infusions, bloodwork, etc., needed to go through my PCP and approved. Lots of room for miscommunication and ball dropping.  Luckily everything got okayed and I went back the next day.

 

Care to hear exactly what happens at my infusions? It started out quite rocky. I was like some exotic animal they had never seen before. The infusion process for IVig is a little complicated until you get used to it. It uses special tubing, it gets infused at differing rates, and my vitals are taken every 30 minutes to make sure I am tolerating it.  I really have nothing but good things to say about all the nurses who have had to deal with me. There was a learning curve for sure.  And I am not a good stick. As in, my veins like to roll and hide. Makes starting an IV a bit of a challenge sometimes.  It usually took a couple tries. I can’t watch when they do it and if they take too many tries, I get woozy. Not the best patient.  Since the infusion were over two days, I would wear the IV home.  Which sounds horrible. And it was. Try sleeping peacefully with that on your arm, trying not to roll onto it.  But thinking about going back and looking for a good vein on the second day sounded worse to me. 

Each day I would show up they would have to access my vein before they would call the pharmacy to start mixing my meds. They would not start until then in case something when wrong and I didn’t end up being able to be infused. The medicine is no good to keep around.  And very expensive to waste. I eventually saw a bill for my infusion appointments.  For the two-day period I was there, the hospital billed my insurance around $34,000.  (I will revisit that little fact in a later post).  Bottom line, they weren’t mixing anything until I was ready to go.  Once accessed I received pre-meds that consisted of 650mg of Tylenol, Benadryl and Solumedrol, which is a steroid.  I also needed a bolus of saline to clear my veins before they started the big guns.  I would sometimes sit quite a while waiting for the pharmacy. Apparently mixing up this stuff is a major process. Slowly swirling it until it dissolves in the liquid. I think someone just stands there and slowly swirls it.  Once we got going, the drip starts quite slowly, increased every 30 minutes if my temp does not rise and my BP stays within range.  From start to finish, my day at the hospital ranged anywhere from 4-5 hours.  I will add here that as time has passed, the norm nowadays is mostly 4 hours, sometimes even sooner. 

 

I started back to work, and life continued.  I felt pretty much back to normal. It was miraculous.  The three weeks between infusions I stayed stable.  I felt very lucky.