Apr 6, 2016

Last Wednesday, I had a follow-up with my pain dr. The IV ketamine I was able to receive in the hospital last month helped the nerve pain so much, but as soon as it was stopped upon discharge, the pain ramped up again. 🙁 Unfortunately, getting IV ketamine in the clinic is not an option currently due to insurance issues, but my pain dr. is working on this!

In the meantime, if insurance pre-authorizes it, I will be switching to an even stronger, anti-convulsant pain medication. I’ll also be getting another bilateral lumbar sympathetic nerve block which is a procedure where the doctors inject anesthetic medications around the sympathetic nerves to temporarily “block” them and try to decrease the nerve pain. She’s booked out so it won’t be until the end of May. My pain dr. also referred me to Palliative Care, and I now have an appointment with one of the palliative doctors next month.

On Thursday, I saw my nephrologist. She was hoping my blood pressure numbers were high enough so that I could start a medication to help my kidneys hold on to magnesium, but unfortunately, my BP is too low. Putting me on that med would dangerously lower my blood pressure, and I’d land in the ER. Given how much IV magnesium my body needs, my nephrologist doubts I’ll ever be able to stop the infusions entirely. 🙁 I’m disappointed that I can’t even cut back on my daily IV fluids with Mg (it’s no fun lugging around an IV pump for 3-6 hours every day), but I know God’s timing is best. She is starting me on an oral Mg supplement in addition to the infusions to see if we can get my blood Mg levels stabilized better.

This morning, I had a follow-up with the Infectious Disease dr. since I’m off IV antibiotics. I’m completely wiped out and sleeping til 3:00 pm most days. I feel like a walking zombie. 🙁 The doctor said it’s because I’m still recovering from being septic. And it will take longer for me to get back to normal because of the mitochondrial disease. On top of that, I’m anemic, so my GI is running some other labs to figure out if this is iron deficiency anemia or hemolytic anemia.

Next week I have appointments with Wound Care (for my raw feeding tube site) and Cardiology.

Thank you for checking in!

P.S. This is my 200th blog post! I started this blog December 31, 2011. Thank you so much for reading and following my journey! It means a lot to me. 🙂

Post written byKerissa

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