Another ER visit and more appointment updates.

Hi friends,

This past Monday evening, I started dealing with 100 degree fevers, severe nausea, and headaches.  So my mom called my GI doctor who recommended that we head back to the ER to get blood cultures drawn in case of a line infection.  Can't catch a break, and ER visits always wipe me out. :(  We spent over 8 hours there---the ER was jam packed!  The doctors ordered labs, IV dilaudid, and zofran.  The meds helped a lot.  Thankfully, they couldn't find signs of infection in my blood, although blood cultures do take a couple days to come back.  They came to the conclusion that this was either a virus or the dysautonomia (autonomic nervous system dysfunction) that I deal with on a daily basis---my body could now be having trouble regulating temperature..

We got home after 6 in the morning on Tuesday, so I've been so exhausted!  I did have two appointments yesterday with my surgeon and a new ENT dr.  I had a lot of granulation tissue growing at my j-tube site, so my surgeon used more silver nitrate sticks to burn it off.  The ENT visit went well.  I had a laryngoscopy done---one of the doctors inserted a scope down my nose to look closely at my swallowing muscles and voice box.  My ENT dr. noticed that all the muscles in that area have atrophied a lot, so he thinks this may be what's causing my chronic cough/swallowing issues.  He ordered another modified barium swallow study with x-ray to be done in 3 weeks.

Here is some good news: I am now off both blood thinners!  I'm so thankful. :)  I had a follow up with the anti-coagulation clinic at OHSU on Monday, and the nurse practitioner consulted with one of their hematologists.  They all agree that I've been treated long enough for this type of clot.

I have a lot of upcoming appointments next month with Neuro-urology, Neurology, ENT, and GI..  This week has again been rough, but I strive to keep my eyes fixed on Jesus and not on all these continuing problems.  One day they will end! :)

"Days have come, days have gone
I know one thing’s sure
Hanging on by the words of Your promise, Lord
You are good, You are true
Even in my pain

And I’m thankful for this suffering
‘Cause it’s brought me right here on my knees...."

~partial lyrics from Perfect Love by Jeremy Camp

Never a dull moment.

Hi friends,

Just an update for you!  For those who don't know, I had to go the ER yet again this week. :(  My PICC line site was red, hot, and swollen, and I was experiencing low grade fevers when my home health nurse visited last Thursday and when I saw my GI specialist this past Tuesday.  He feared a line infection and wanted it to get pulled.  So Wednesday I was told to go to the ER.  When the doctors and nurses know you, you've been there too often...... :/  They drew blood cultures and labs to check for infection and ordered an ultrasound to rule out clots in my upper arm.  And guess what----a clot was found in my cephalic vein!  That's one of the complications when you have a central line.  They admitted me overnight in the ER observation unit for IV fluids and potassium because my potassium levels were low.  They also pulled my line and started me on two heavy duty blood-thinners to prevent it from traveling to my lungs and causing more problems.  Yesterday morning, the PICC team came by to place a new line in my left arm.  I was also taught how to give myself anti-coagulant shots twice a day....not pleasant. :(  This certain drug burns horribly!

Today I had a follow-up with my cardiologist.  We discussed my recent heart echo results, and he is going to consult with another cardiologist because they found thickening of my aorta (that was a surprise because it wasn't there on my two previous echos!).  Also, they found a mobile mass in my right atrium, but he thinks this is congenital and shouldn't cause problems.  Still, that was another surprise since it wasn't found there before!  I am a puzzle, and I keep my doctors on their toes. lol ;)  My cardiologist is also going to get in touch with my GI specialist next week to see if more sodium can be added to my TPN because my high heart rates, dizziness, and heart fluttering has been getting worse.

Monday I have an appointment at the anti-coagulation clinic to get labs drawn and see the doctor there.  And Wednesday, I have surgery to get a central line placed in my chest!  They wanted to do this soon to prevent a clot from happening again.....but who knows, I'm not the typical patient. ;)

It's been crazy hectic, and my arm where the clot is still doesn't feel well yet.  But I continue to trust the Lord and persevere!  He is good.

Thank you all for your love and prayers!

P.S. A famous mito specialist from Ohio came to speak at OHSU the same evening I was in the ER.....the ER docs were so kind to let me go to it since the lecture was literally just down the hall! :)  It was very informative.  I was able to ask the mito specialist about my mtDNA depletion results.  He looked over the report and told me that my depletion is 99% which is very high....no wonder my GI tract is so affected. :(  I really hope these results and the ones pending will help me be eligible for a future clinical trial!

My new PICC line right after it got placed :)