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 our house to recover!  We play games and watch a lot of movies together. 🙂

Anyways, here are some updates on my July appointments:

Cardiology- My cardiologist wants more salt added to my TPN for my low blood pressure and tachycardia.  11 or more grams to be exact!  That’s a ton of salt but it’s needed for these heart issues.  He spoke with my GI specialist.  Unfortunately, adding that much salt would require a big increase in my IV fluids to balance everything out, but I can’t tolerate more than a liter at a time because of my neurogenic bladder.  Soo, my GI specialist is conferring again with my cardiologist to see if I can instead crush salt tablets and flush them through my jejunostomy feeding tube.

Sleep Medicine- July 2nd I had my 4th sleep study.  They put BiPAP on me.  Everything went well until 5 AM that morning when I woke up with horrible stomach pain and distention!  Apparently, I started experiencing something called aerophagia, probably due to a weak esophagus.  BiPAP air went down my esophagus and into my stomach because the valve covering the esophagus didn’t close fully.  We are still going to try BiPAP again at home, starting this coming Monday.  Please pray I can tolerate it (there aren’t really any other options for my sleep apnea).  My sleep dr. also ordered my 2nd pulmonary function test which was completed yesterday.

Gastroenterology- My blood copper level is still dropping dramatically by the month, even though I’m receiving 6x the normal amount in my TPN.  My GI dr. said this shouldn’t be happening.  My ceruloplasmin level (related to copper) is also low.  He’s now running more tests and checking for another bad genetic disease.  I hope I don’t have it. 🙁  He also plans to add more dextrose (sugar) to my TPN because I’ve been dealing with frequent low blood sugars…it dropped to 54 at one time.  I see him again in less than 2 weeks.

Rheumatology- Yesterday my rheumatologist took a very detailed history of all my symptoms to try and get to the bottom of these daily fevers I experience.  He ordered more genetic testing. 🙁  He wants to see if I have a genetic Periodic Fever Syndrome.

Hematology- Today I saw my hematologist.  If that copper genetic disease comes back negative, he thinks my low copper issues are related to my Mitochondrial DNA Depletion Syndrome.  Copper is vital for proper function of Complex IV in the mitochondrial electron transport chain.  He also ordered more labs to check my red blood cells and make sure I don’t have the blood disease that came up on my Whole Exome Sequencing results.

I had to have 8 tubes of blood drawn today..
Physical therapy- Last week, I started up weekly PT visits again.  The muscles in my legs are extremely tight which causes balance issues and exacerbates my muscle weakness.  So my therapist wants to work on these problems and strengthen my core.  The CRPS pain has been flaring up with all of this, so my legs have been aching and burning so much. 🙁
Phew!  As you can see, a lot has been happening.  But we all continue to press on.  The Lord is sovereign and good! 🙂  He has been with us every step of the way.
Thank you so much, Mrs. E, for this beautiful bouquet of flowers!  They make me smile, and I look at them often as I spend a lot of time in the living room.  That was so thoughtful of you to think of me since I couldn’t partake of your yummy dinner with my family.  Love you! 🙂
Post written byKerissa

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