Continued from my last post....
I found myself at the end of August 2015 with a diagnosis and treatment plan. I felt confident and hopeful. My neurologist cautioned that this would be a long road and that it could take a year before the nerves repaired and we knew what kind of permanent damage there was. I'm a glass-half-full kind of girl - I just can't wallow in the negative or worst case scenarios. I knew that a miracle was unlikely with IVIG but I was hopeful. I scoured the internet for stories of IVIG and rapid recovery. Partly I wanted to know what I was in for and partly I wanted to know that others came out fine in less time than expected. I found the usual mix of worst case stories, hopeful stories and stories that just added to my confusion. Still, it was comforting to know that others were going through this. I also joined a couple Facebook groups, which have really helped as they are a community of people going through the same or similar things.
I was pretty nervous about the IV thing - I am not good with needles. They make me squeamish and in the past I've had trouble with blood tests. The summer cured me of that, but I was still uneasy. Turns out I have tiny veins. It took time to get an IV into me that worked, but they got one (well 3 over the course of the week). It wasn't too terrible. I had chills and a headache the first day when they tried to increase the rate too much (it was still acceptable for my weight range, just not for me. If you are new to IVIG, pay attention to how you feel at each increase and really be honest with the nurses about it). They stopped the infusion while I warmed up, gave me Tylenol, and set it back to the last acceptable level. After that it went fine. I was told to take Tylenol before arriving the next day. Oh yes, I should mention that IVIG is a 5-day event for me. I may switch it to 2 days now, but that is for a later post.
IVIG made me tired and a little flu-like but was not too bad. I felt a little better the following week but nothing earth-shattering. I have been keeping a daily symptoms log since July and was careful to update this following my first IVIG. This is also the time that I stopped going to work and went on short term disability (I had been working reduced hours since the diagnosis).
As I mentioned, I felt pretty good the week following IVIG and went back to physio. Around 2.5 weeks after I started to decline again. I was now using 2 canes and having difficulty managing the steps on the deck to get into the house. Scott and I were getting pretty stressed about all of this. I was on a waiting list for provincially covered physiotherapy as we were out of private coverage through our insurance. I was also on a waiting list for an occupational therapist to come and assess the house. It seemed that things started progressing faster than we could handle and we really didn't know what to do. Our doctor was great at writing notes and prescriptions but she could not help with the OT/PT stuff.
On a positive note our friends really stepped up and came to the rescue. We had more meals than we could eat, dog-walking assistance, wood-stacking help, you name it. This would be way worse without all of the support our friends have given - yay you guys! My parents also came up for a visit in September and were a big help with the meals and dog.
We made arrangements for my physiotherapist to come to the house as it was becoming really hard to get me out of it. He also arranged for an occupational therapist to come with him one day. This helped - we got some things from the Red Cross and were given some ideas of ways to make things easier. My exercises were scaled back but I kept doing whatever I could each day. I was determined not to let this get the better or me.
By my second round of IVIG, 4 weeks after the first, I had to go up and down the deck steps on my butt. The IVIG helped and I was more mobile at the end of the week, but still worse than I was at the end of the first treatment.
Over the next 3 weeks the same pattern emerged - minor improvement in the week after IVIG followed by a steady and speedy decline. I started falling in the house. By this point I was using a walker or 2 canes. I was also finding it increasingly difficult to get myself up from the couch. By the end I was living in bed and only walking to get to the washroom. We were getting really concerned about how I would get to my next IVIG treatments - they don't do them at home here. I was also beginning to feel tingling in my fingers, which was scary. The legs were bad enough, I did not want to start losing strength and mobility in my arms and hands too.
Then came 'the incident'. On October 23 I was walking back from the washroom with my walker (and Scott spotting from behind) when I tripped over my foot and broke my ankle.We called 911 and off I went to hospital...
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