May 1, 2019

Waiting. Waiting. Waiting.

*You cannot un-see these pictures.  Proceed with caution.*

Journal Entry #4

I arrived home from Guatemala, to no medication.  In a round-about way, we found out that there was a hitch with the hospital purchasing the medication on our behalf…so I hustled and immediately went to the bank and arranged the wire transfer of money to the manufacturer.  I was hopeful that this would speed the process up.

We had done a lot of walking through airports on our way home from Guatemala, as we flew through Dallas.  It had been a long day of travelling to get home, so I wasn’t surprised when I woke up the first morning back to a swollen foot.  But I was surprised to have shooting pain up in to my calf, redness up past my ankle and the wound was oozing through the bandaging.  My first thought was “shit, it is infected.”  I began marking my leg with permanent marker and took pictures to email Dr. Wiggers and Dr. Bogglid with an explanation.  Both were quick to respond.

Altitude change.  We had spent the last 10 days in the volcano region at a higher altitude, 2 flights home and my body was angry and would have to recalibrate the extra fluid and readjust to a new normal.  Lots of people swell when they fly.  I haven’t experienced that before, but I was relieved to know there wasn’t an infection. I monitored the pain, inflammation and redness for the next 5 days, changing the bandages about every 4 hours due to the amount of “muckiness” as my body readjusted.

Being in the space of waiting is so challenging.  We know what we need, we know what needs to be done, but here we sit, waiting patiently for the Miltefosine to arrive.  And I am really good at wound care now.

April 23 found me back to UHN for another follow up with Dr. Bogglid. My husband was away on business so my brother drove me down and escorted me to the appointment. I am going to have to find alternative way of getting to appointments and a good idea for me to get used to commuting to the city. I will have weekly (at a minimum) visits for the next 8-12 weeks and annually for the rest of my life.

I guess I didn’t mention that yet.

Best case, the Miltefosine will supress the parasitic activity and allow my immune system a restart to fight.  Unfortunately, the Miltefosine will not sterilize the bug from my body completely.  This means, that going forward, any time my body becomes immunocompromised or stressed these little buggers could potentially re-surface and wreak havoc again. They won’t resurface and present as they are now with ugly ulcerations on the skin, but instead they will begin to ulcerate in my nose, organs or heart.  This is why discovering the Vianna subspecies is so important, so that we know where to monitor and what to look for down the road.

So, we wait.  Patiently. There is no process for this, no protocol for accessing a medication like this, we are all figuring it out as we go. It is the truest test of patience that I have ever experienced.

xo Juli

1 thought on “Waiting. Waiting. Waiting.”

  1. Juli, if there is ever a person with an optimistic outlook, it is YOU. I admire your determination and persistence. Many people would have given up by now. If I could do anything to help you, I would.

Leave a Comment

Your email address will not be published. Required fields are marked *

Shopping Cart
Scroll to Top