Sunday, December 09, 2018

More medical distress...

Five appointments in eight days was just too much for me.  It really was.  This is especially so because, these days, seeing specialists means getting distressing news.

I still have three more appointments next week, but one has changed.  I had to reschedule the cardiology appointment because, next Thursday, I am having a lung wash under anesthesia.  SIGH.

The thing is that my lungs have not gotten better after six months of treatment.  Some of my testing was slightly worse.  I had read the CT scan report and thought that it was okay, but it wasn't.  My pulmonologist said that we needed to shift our expectations for the treatment plan to not getting any worse.  You know ... shift from getting better to not getting worse.  That gutted me.

She had talked about having a lung biopsy, but that would require a three-day hospital stay.  Besides the cost of that, I don't have anyone to stay with Amos for three days.  There is no way that he can be boarded, sadly.  His anxiety is too high and his PTSD makes life so very hard for him.

A lung wash is a compromise.  Under anesthesia, saline will be injected into my lungs and then suctioned back out.  The saline is then analyzed for viruses and fungi.

You see, I cannot stay on prednisone long term.  With the lack of progress in getting better, I need to be transitioned to immunosuppressants.  If I have something brewing at the bottom of the lobes of my lungs, where the damage is seen on imaging, immunosuppressants will explode growth and put me in danger.  That is why she needed me to have a TB test, too.

Sjogren's Syndrome is attacking my body.  It is making my own immune system work against me.  So, immunosuppressants will turn down the effectiveness of my immune system.  The TB and malaria I have had in the past are still in my body.  So, taking immunosuppressants puts me at serious risk of battling those diseases again.

My pulmonologist talked about weighing the risks of my symptoms versus the risk of the medication to treat them.  This balancing act would be her main focus moving forward, depending on the outcome of the lung wash.  SIGH.

Distressing news Wednesday.
Then came Thursday.

The CT of my neck showed the likely reason for the constant shocking in my hands:  the nerve controlling my arms is being compressed in my neck.  So, the neurologist wants me to see a neurosurgeon.  I see the neurologist on Tuesday, but she wanted me to get scheduled as soon as possible.

The hope is that steroid injections would help the problem, but I could not afford regular injections.  At first, I thought at least one round would be diagnostic for me.  But my GP said that that would not necessarily be the case.  The injection could not be done in the right place and I still wouldn't know.  Or they might not help at all, but the compression could still be what is causing the constant shocking.  SIGH.

The appointment will cost $45, but I would like to go to have someone read the scans who better understands interventional options.  The surgeon chosen is recently trained in minimal approaches and microsurgery.  She was, apparently, a coup for Parkview to get.  And her husband, incidentally, works with my GP.  I plan to call for an appointment on Monday, as I asked the neurologist's nurse to wait to schedule anything with the two choices she gave me until I could talk with my GP.

I adore my GP.
She is amazing.
And she is very patient with my myriad complex conditions.

Still, it was an exhausting and distressing week for me.  And I have been trying to swallow that distressing news ever since.

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