Gratitude...a precious offering.

Hi everyone,

Just wanted to let you know that things medically are going ok with me, but my grandma (my only remaining grandparent) is not doing well at all and is in the last days of her life due to congestive heart failure. :(  It's been so hard to see her decline...the hospice nurse thought maybe she had 1-3 days left, but our grandma is a fighter and is still hanging on even though she has not had food or liquids since last Monday the 16th. :'(  She's in a drugged-up state and cannot talk or swallow, so the liquid morphine has to be rubbed around in her mouth.

I did receive my liver biopsy copper results back from the Mayo clinic last Friday.  My GI dr. called me, and it's not good news.  But I'll share about that another time.

Have a blessed Thanksgiving, friends.  Hold your loved ones close as things can change in the blink of an eye.

Love,
Kerissa

Pathology results

Hey friends,

My liver biopsy last Friday went very well!  Thank you so much for praying!  The doctors were able to obtain two specimens without complication.  After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. :(  We weren't sure what was going on and if this was a new symptom related to the mitochondrial disease.  Thankfully, they slowly recovered and I'm getting rid of the fluid!  My local mito specialist whom I saw on Tuesday suspects this was caused by the one of the drugs used for sedation during the biopsy.

Yesterday, my GI dr. called me with the initial liver pathology results (the copper results from Mayo aren't back yet).  Some mild inflammation was found in my liver but no sign of cirrhosis, hepatitis, etc.  That's good news!  He thinks the inflammation is from TPN (IV nutrition can damage the liver which is why it's not ideal).  Speaking of TPN, next month is one whole year of being on it!  Hard to believe.  I know there are big risks and it's only used as a last resort as my GI dr. states, but lots of blessings have also come as a result of TPN---I haven't had an ER visit for a "mito crash" in over 8 months (I used to have to go every 2-3 months!).  The IV fluids, amino acids, extra vitamins/minerals in the TPN have helped so much.  The nutrition has also prevented all the coughing/retching I used to deal with every single night due to a weakened esophagus.  It was horrible, and I hardly got any rest.  So I'm very thankful that went away. :)

Still working hard in physical therapy every week.  My mito specialist at Randall Children's thinks my "foot drop" (a neurological symptom) has improved somewhat. :)

This coming Monday I have another follow-up with my GI dr.  Hoping the Mayo results will be back.  I'm dying to know my liver copper level!  It never gets any easier waiting for results.. :(

Every single Wednesday, this huge stack of boxes gets delivered to our door.  I wonder what the UPS delivery guy thinks! haha ;)  The boxes contain all my IV nutrition, IV fluids, and central line supplies!

Liver biopsy

Hey guys,

Just wanted to let you know that my liver biopsy is scheduled!  My GI dr. put the order in as "urgent," so it's for this Friday the 6th.

This specific dr. performs complex image-guided biopsies.  He's only 13 years older than me (wow!), and yet, he's a Portland Monthly "Top Doctor." :)  Very thankful I'll be in good hands.  And in the Lord's!  A piece of my liver will be sent off to Mayo, and we should we getting results back the following week.

In addition to receiving TPN (IV nutrition) for 16 hours every night, I also now get infused with IV fluids every day for 2 hours.  *See pic below*  It's a cute little bag! ;)  It has extra sodium, potassium, and magnesium to try and raise my low blood pressure and prevent the painful muscle cramping I experience.

I will let you know what the biopsy results show!  I also see my mitochondrial neurologist at Randall Children's next Tuesday and will be sure to update on that as well.

Thank you so much for your prayers! :)

__________________

P.S. I thought this was so neat and wanted to share!  OHSU's fall newsletter came in the mail today, and this was the featured story. :)