THIS IS MY STORY . . .

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Dec 9, 2015
Hello friends,For those who didn't hear, my grandma passed away the day after Thanksgiving.  We had a beautiful service for her this past Saturday.  We all miss her so much. :'(  It sure is different not to have any more grandparents living.On November 20th, my GI dr. called, and I got diagnosed with Wilson's Disease, also known as hepatolenticular degeneration.  He thought WD very unlikely, but you know me, I'm a puzzle. Wilson's disease is a rare, genetic copper overload disorder where the body lacks or has an abnormal copper transport protein due to two mutations.  [...]
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Nov 25, 2015
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 [...]
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Nov 13, 2015
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 [...]
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Nov 3, 2015
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 [...]
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Oct 24, 2015
Hey friends,Here are the latest appointment updates for you. :)Rheumatology--- The new rheumatologist I saw at OHSU is very nice!  She's not 100% sure that I have the periodic fever syndrome "Familial Mediterranean Fever" because I only have one mutation versus two (FMF is recessive).  But, 30% of patients with FMF only have one identifiable mutation anyways.  Soo, regardless of the genetic results, she's starting me on the standard FMF treatment to see if we can get these fevers to go away, and I'm to monitor my symptoms while on the medication.  It's a very small dose, [...]
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Oct 15, 2015
Hey friends,Tomorrow, rheumatology is getting me in for the Periodic Fever Syndrome, and I'm so thankful to the Lord that it's much sooner than January. :)  The appointment is at 1 PM.  Please pray that this specific dr. will be able to start treating it.  The numerous fevers are hard on my body, and I've been dealing with episodes of joint pain and inflammation since August.I received my repeat 24 hr. copper test results, and sadly, the level increased from 77 to 106 in just a month (normal range is 3-50).  We have lots to discuss with my GI dr..  I see him [...]
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Oct 3, 2015
Oh I just can't catch a break. :(Last week, I had to say goodbye to my home care nurse. :(  She changed my central line dressing site and drew labs at my house every single week for 9 months.  Long story short, the home health agency she worked with got bought by a huge company.  She didn't really like all changes involved, so she found a new job.  I'm going to miss her!  She was a very caring and compassionate nurse!For the past week or so, I started experiencing severe pain, intestinal spasms, and other symptoms near my jejunostomy feeding tube.  The pain's [...]
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Sep 19, 2015
Hello friends,Yesterday, I received some unexpected news.  A few months back, my hematologist referred me to rheumatology to get their input on why I'm still having persistent fevers.  I saw them end of July, and the doctor ordered an extensive genetic panel to test for all 7 Periodic Fever Syndromes that there currently are.  It was completed through the same lab that did my Whole Exome Sequencing.  Well, yesterday, my rheumatologist's office called and told me that a mutation was found.  *sigh*  I can't believe my doctors continue to find more and more [...]
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Sep 4, 2015
Here are some updates for you all. :)  Thank you so much for continuing to pray! The past two weeks, I started experiencing sharp pain in the ball of my right foot---it became very painful to bear weight on it.  I saw Orthopaedics, and the doctors think I'm dealing with something called metatarsalgia which is pain, swelling, and inflammation of the metatarsal bones/joints in the foot.  Thankfully, it's improving!  Ice and rest has helped. :)  The doctors also referred me back to occupational hand therapy because my right hand has been cramping up a lot again, even [...]
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Aug 11, 2015
Today, I saw my GI specialist.  It wasn't very good news.I mentioned in my previous post that some of my lab work has been steadily dropping even with 6x the normal amount of IV copper in my TPN.  This past Friday, my GI dr. personally called me to talk about what may be going on.  He told me that he's going to get in touch with some doctors who specialize in copper metabolism diseases (a dr. in San Francisco and one on the East coast).So this morning, he was able to connect with the dr. in SF.  This expert suggested looking into a rare metabolic disorder called [...]
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