THIS IS MY STORY . . .

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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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Jul 29, 2015
Hello friends,I'm sorry it's been so long since I last updated.  This month has been crazy full of appointments!  On top of that, my older brother got hit by a car (not his fault) when he was riding his motorcycle on the way to his work two weeks ago. :(  The Lord is so good---things could have been way worse.  My brother was life flighted to one of the trauma hospitals in Portland, but we're so thankful he didn't have any severe internal damage.  He did have a broken collarbone, 5 broken ribs, lung contusion, and other injuries.It's been really fun having him stay at [...]
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Jul 8, 2015
Today, I had a follow-up with my mitochondrial disease specialist in San Diego to review the whole exome sequencing results!They found about 100,000 variants in me, but they only can report the mutations that they think may relate to my symptoms..Unfortunately, we still don't know what gene mutation(s) is causing my Mitochondrial DNA Depletion Syndrome (my depletion is high and very significant....not good).  This means I currently can't get into a clinical trial because a mitochondrial molecular abnormality was not found as of yet...sad news, but my mito dr. told us to not be too [...]
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Jun 24, 2015
Hey guys,Last week, I received my sleep study and EEG results!Compared to my sleep study in 2013, things have worsened sleep apnea-wise.  The results show that I stop breathing an average of 17 times per hour.  No wonder I'm so tired. lol  The longest length of time that I didn't breathe well was 50.6 seconds.  The sleep data also shows that my heart rate shoots up to 147 beats per minute multiple times throughout the night.  We're not sure what causes that---I do see Cardiology next Wednesday.My sleep dr. wants me to go back to the sleep lab.  He put in an order [...]
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Jun 12, 2015
Oh what a crazy past two weeks it's been.Last week, we found out that my whole exome sequencing results aren't in yet (and wouldn't be completed by the end of this month) even though the test was started the first week of February.  Btw, the laboratory I'm getting the test through is not affiliated with UCSD Medical Center.  So it's not UCSD's fault this time. ;)  For those who've been following the blog a long time, you probably remember something similar to this happened last year..Anyways, back to the story....we had all our plans made---lodging, airfare, and the scheduled [...]
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May 29, 2015
Hey guys!On Tuesday, I saw the neurologist at Randall Children's.  She's the doctor who went through a year long mitochondrial medicine fellowship up in Seattle.  It was a good appointment, and she's really nice. :)  I'm so blessed to now have a doctor who will take care of all my mito issues locally.I mentioned that I've been dealing with worsening myoclonus (muscle jerking)---it can be brainstem related, spinal-cord related, or from the muscles.  It could also be from seizures.  So she went ahead and ordered a standard 30 minute EEG which is scheduled for June [...]
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May 21, 2015
Hi friends,A short update for you---thank you for praying for me and my family. <3  Things still aren't going well.  Abdominal pain and distention has been coming back with a vengeance.  I continue to deal with daily fevers (it went up to 101.6 one time) and lots of other symptoms.  I've had 13 tubes of blood drawn so far just for lab work ordered by my hematologist.  He's going to be out of town the rest of this week but plans to call me next week to go over results, etc.  Not sure if something will be found at this point.... :/  I wish I wasn't so [...]
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