More test results

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 for CPAP settings to be calibrated and titrated to see if I can tolerate it better.  If not, he mentioned again that we may need to switch to BiPAP.  This 4th sleep study is scheduled for next Thursday, July 2nd.

My EEG results show something called brain wave "slowing."  This is abnormal and can be caused by numerous things.  I hope to ask my mito specialist what this means in relation to the mitochondrial disease.  My neurologist said this may be partly why I experience cognitive issues.

I'll be admitted again sometime in the future to get an overnight EEG completed.

Next month alone, I have a total of 14 appointments. :(  It will be busy!!  My parents and I also leave for San Diego next Saturday for my mitochondrial appt. on July 7th.

Lastly, we received my blood copper level back again.  It dropped even more which is not good. :(  My GI dr. is now having 6 times the normal amount of I.V. copper added to my TPN....that's a lot!!

Thank you for checking in! :)

Unexpected

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 June 23rd appointment with my mito specialist.  The clinic coordinator told us the appt. would need to be postponed.  Talk about stressful!  She also explained to us that my mito dr. is booked out until October.  Disappointed and sad by this news, we knew it would take a miracle for me to get in sooner than October.  But like ALWAYS, God is faithful and in control!  He is good.

Long story short, one of my mito specialist's other patients took my June 23rd appointment, and I was able to take their scheduled July 7th appt. which is just two weeks after the 23rd! :)  One of the representatives at the lab double-checked with the director and all the PhDs who will be putting together the interpretation to make sure that the test will be finished by the 7th.  And they said it will. :)

True, we have to change our flights and lodging, but it could have been a lot worse!  So I'm thankful.  I do hope nothing like this happens again!

This past Monday, I had my 3rd sleep study to check up on my breathing and sleep apnea.  And all day Tuesday, I had my 1st multiple sleep latency test (this one was torture because of what it involves) to rule out narcolepsy and other hypersomnias.

Wednesday, my home health nurse came to draw labs from my central line and change my line dressing site (she comes every single week).

And today, I went through my 1st EEG to rule out seizures and pin-point where the myoclonus is coming from.  I had electrodes placed on my head 3 times this week alone.  Not pleasant! :/  Hope to get sleep study and EEG results by next week.

picture of my brain waves :)

Finally, my hematologist called me last week.  He ordered another test to further check into this certain myeloproliferative disorder, and he also referred me to OHSU rheumatology to get their perspective regarding my daily fevers, etc.  The rheumatologist I'll be seeing is booked out, so the appointment is not until July 27th. :(

That's about all for now! ;)  If you made it to the end of this long update, you're awesome! ;)