THIS IS MY STORY . . .

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Jan 26, 2016
Hey friends, Just wanted to share some news---my liver enzymes dropped and are now in the normal range!  My hepatologist thinks I had autoimmune hepatitis which resolved quickly (must be because of all your prayers! :)  Thank you, Lord!!  He really does hear our prayers!  My magnesium level is still not where we would like it to be, but my hepatologist (he's my GI dr. for now until my main GI specialist returns from out of the country) added even more magnesium and 2 different types of potassium to my daily IV fluids which I now receive for 3 hours. He also called me last week and [...]
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Jan 18, 2016
Hey friends, These past two weeks have been super rough....still not feeling well at all. :(  We found out 2 weeks ago that my liver function blood test results quadrupled suddenly which indicates liver damage/inflammation.  The results have improved since then, but one of the liver enzymes is still higher than normal. I saw my GI specialist last Tuesday, and he expressed that he's worried about down the road.  You never want to hear a doctor tell you that. :(  I've been on IV nutrition for more than a year now, and that definitely doesn't help things liver-wise.  I'm still [...]
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Jan 9, 2016
All last week, I wasn't feeling my normal and just felt "off."  I kept losing my balance and had nystagmus/dizziness.  This past Saturday, I was feeling so bad with horrible body aches, headache, and nausea, so I ended up going to the ER to make sure I didn't have a central line infection. The ER docs followed my mitochondrial specialist's ER protocol letter, so I received through my central line a dose of IV carnitine and more than 3 liters of continuous D10 with sodium chloride and potassium.  I also had a ton of labs drawn.  It turns out I was nearing a metabolic alkalosis state [...]
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Jan 1, 2016
This year alone, I had a total of: 51 doctor appointments 21 physical therapy and occupational therapy appointments 5 MRIs (brain, cervical spine, thoracic spine, foot, and heart) 2 more surgeries (central line placement and liver biopsy) which makes a total of 9 so far 2 overnight hospital admissions 1 blood clot in my right cephalic vein 14 days of blood thinner injections 52 home care nurse visits 52 central line dressing site changes 3 sleep studies which showed worsening sleep [...]
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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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