Sunday, September 4, 2011

So one of the first Infusion "Big Gun" drugs I was one really never helped.  I was on it for quite some time before finally at one infusion my faced turned red and it felt like I was having an allergic reaction.  After that I never went back.  They were expensive treatments, if I remember right about 10K every 6 weeks and we had insurance but still you end up paying quite a bit considering the cost.  When you are desperate and hurting you will try almost anything.  At the time, I had sores all over my legs.  My GI had the nerve to tell me that it was probably from shaving with a dirty shaver.  Are you seriously that stupid or are you just afraid to admit that one of these drugs could possibly have side effects.  Not to mention my sinus problems and explained in a previous post that led to surgery that ultimately the growth grew back and at this point I'm not sure what to do.  Then you have the long term affects that you never are sure about.  Cancer, etc....   It seemed that for a week after the infusions I had more energy, but again being dehydrated from this disease it's hard to say whether it was the meds helping or the saline mixed in.  These were hard infusions to go take on a regular basis.  You would sit in a large room full of extremely ill people, most fighting cancer at one point my dear friend who eventually passed away was sitting there with me.  Many would be crying and in excruciating pain either physically or mentally.  Not only would you be put in this situation and I don't mean to sound nasty, but many of these poor dear folks would be desperately ill.  I would try to sit as far away and by myself as possible for fear of catching what they were carrying with them.  These drugs weaken your immune system and you are in a weakened state.  The infusions would take about 3-4 hours and there was no entertainment, just a chair, sometimes if you were lucky you were offered a blanket and whatever you brought with.  The problem was when someone is one foot away from you and the room was full of this situation it's hard to rest, relax or even concentrate.  Now try doing this for years and paying large amounts of money to do it and not knowing the consequence of the drugs.  This is the reality of severe to moderate crohn's disease that doesn't let up.  GOD BLESS THE NURSES WHO GO AND DO THIS EVERYDAY!  At 10K a pop couldn't they afford a room larger than my living room for 30 people fighting for their lives.  Someone was getting rich at our expense and I hope they can feel good about spending money earned in this unconscionable fashion.  Just saying.

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