THIS IS MY STORY . . .

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Nov 12, 2018

Hey friends,

 

It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately!

 

In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood).  My central line site was really tender and oozing a little.  So my GI specialist quickly started me on a 10-day course of Doxycycline (a very strong antibiotic I’ve never taken before).

 

Well, 2 or 3 days after I started the antibiotic, I came down with a cold (an antibiotic side effect that can happen).  It took me more than 16 days to recover from just a simple cold. 🙁  My neurologist explained that I’ll always have more severe symptoms with any kind of illness due to having mitochondrial disease.

 

I also found out that this class of antibiotics is on the “do not take” list for those who have mito because it “inhibits beta-oxidation and mitochondrial protein synthesis.” 🙁  Not sure if that’s also why it took me so long to get better, but now we know that I should stay away from these specific antibiotics if possible.

 

In October, I also had a follow-up with my orthopedic hip surgeon, and it wasn’t the best news.  My hip is still not doing better, and I have a lot of scar tissue in the hip joint.  I continue to have physical therapy twice a week, and recently, I also had to get an ultrasound-guided hip steroid injection to soften the scar tissue and decrease the inflammation.  The doctor who did the injection felt a lot of resistance (due to the scar tissue) when he inserted the needle into the joint.. 🙁

 

Several weeks ago, I had my first appointment with an OHSU endocrinologist.  She wanted to run a bunch of labs (I had to get 8 tubes of blood drawn) and have me undergo a cortisol stimulation test to rule out adrenal insufficiency.  If I have adrenal insufficiency, my doctor explained how that would be the answer as to why I went into septic shock in August.

 

Well, I had the test done last week, and the results show that I don’t have AI.  That is good news, but that also means we still don’t know why I went into shock.. 🙁

 

Regarding the osteopenia, I see my endocrinologist again in March to get another bone density scan done.  The scan will show us if the osteopenia is stable or not.

 

Last week, I had 5 appointments which was so very tiring!  And this week, in addition to physical therapy, I have follow-ups with my urology surgeon and my pain doctor.

 

Here’s something nice to share.  I recently got a new wheelchair! 🙂  Same color because I love green. 😉  But this frame was made with titanium (instead of aluminum) so it’s considered an ultra-lightweight chair!  The seat cushion is also much better than my previous one.  And, the whole chair was covered 100% by my insurance (it was over $8000)!  One sad thing is that they forgot to add “push handles” which is needed for whenever I don’t have the energy to wheel myself..  So, it’s being looked into.. :/

 

Here’s some more good news.  Regarding tube feeding, I use this elemental (broken-down) formula called Peptamen and then alternate that with an organic “nutrition shake” that contains fruits and veggies.  I always tolerate the organic one better, but it’s not covered by insurance because I could only get it from the store or Amazon.  Well, last week, we found out that my tube feeding company now carries the organic formula!  Isn’t that awesome!? 🙂

 

Anyways, if I don’t get a chance to update again before the end of the year, Happy Thanksgiving (and Merry Christmas)!!

Post written byKerissa

This post has 2 comments

  • Kerissa, your attitude always amazes me. You are so sweet and I love the way you can find good news among so much not so good news. I try and pray for you every day. I am going to pray extra hard that you and your family will have a wonderful Thanksgiving and Christmas and the holidays will produce special memories that will bless you in 2019.
    As always, thank you for sharing your life with us! ❤️

    • Dear Mrs. Lamotte, thank you so much for your steadfast prayers and support! They keep me going. 🙂 Your caring words always lift my spirits, too!! Love you lots!!

      Kerissa

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