Cardiac findings and ENT update

Hey friends,

Thank you for checking in and for your continued prayers!  So much keeps happening, and this journey just gets more and more complicated.. :/

But this I remember: the Lord fights my every battle, so I will not fear.  He goes before me and never forsakes me!

Some of my blood counts have been steadily dropping since December, and I'm now anemic.  That and low grade fevers every day hasn't been fun.  My primary care physician ordered a bunch of labs, and we found out that I'm very deficient on ferritin (even while on TPN).  I should hear soon what the plan is for that.  And, I see my GI dr. next Thursday for a much needed follow-up.  If the ferritin deficiency is not what's causing the anemia, then my PCP will be referring me to Hematology.

Last month, my cardiac electrophysiologist referred me to General Cardiology to discuss my recent heart echo results.  That appointment was this past Monday.  The dr. went over the echo images and explained that the wall of my descending aorta (in the abdominal area) is very irregular and "jagged" which is not normal.  It's supposed to be smooth.  She's not sure what to make of this and whether it will cause problems, so she ordered a cardiac MRI to investigate this further.  This will be my 17th MRI scan...

Today I had a modified barium swallow study, esophagram, and ENT follow-up.  Long day!  The results of the two tests show that the movement (peristalsis) of my esophagus is very slow....food and pills I swallow get stuck and don't move down well from my mouth to the stomach.  This is called esophageal dysmotility.  My ENT dr. isn't surprised that I have this because I've already been dealing with small intestinal dysmotility and large intestinal dysmotility....my whole GI tract is affected. :(  This is because there aren't enough mitochondria in my GI tract (caused by the mtDNA depletion).

I had these two tests done last year, and my ENT dr. compared them.  Things have worsened since then.  Unfortunately, we won't know what will happen a year from now..

Mitochondria are in every cell!  That's why mitochondrial disease affects SO much.  It's not just a muscle disease or heart disease....it affects the intestines, muscles, heart, brain, autonomic nervous system, eyes, and anything else you can think of that requires energy!  I recall hearing a talk by a mito specialist in LA, and he explained that "energy is the difference between life and death."  Many people often say I look so normal...that's because mito is a disease that affects at the cellular level.  Anyways, enough of my rambling....just want to raise awareness. ;)

Every time my doctors discover more and more that's wrong inside my body, the only thing I can do is rest in the Lord.  He has a good purpose in every single thing that happens!

"You go before me every step I take..."

Hey everyone. :)

This past Thursday, I had a neuro-urology follow-up.  I tried two different medications for my neurogenic bladder, but both caused awful side effects.  So at this appointment, my doctor discussed what needs to be done.  It looks like I may have to have surgery #9 this year in order to protect my kidneys/bladder.  She recommends this be done sooner rather than later.  It involves neuro-modulation (the spinal cord stimulator that I had implanted for CRPS pain back in 2011 was a neuro-modulation device).  So this surgery is very similar---it corrects the abnormal signals in my brain and helps the sacral nerves in my spinal cord.  We won't be making the final decision, though, until after I see my mito specialist in June.

My neurology appointment today went well.  I updated her on all that's been going on.  I've been dealing with an increase in shock-like muscle jerks, and she explained that they could be caused by many things, one of them being seizures..  If the movements worsen, she'll have me get an EEG (electroencephalogram) to try and pin-point where these are coming from.

Regarding the low-grade fevers I experience that come and go, I'm to monitor them.  If they reach beyond 100.1 degrees, I have to let my PCP know to get this investigated further.  My neurologist said fevers can be caused by numerous conditions, and she believes they're not from dysautonomia.

TPN overall has been a blessing.  But, it also causes something called fluid shifts which result in very painful charlie-horses!  I had over 20 long-lasting muscle cramps (sometimes each last up to 10 minutes long) all over my body yesterday.. :(  My GI dr. is continually trying to lessen these by adjusting the TPN infusion rates, but lately, this issue seems to be getting worse.  I have another follow-up with him in a couple of weeks.

Yesterday, my pastor shared this passage from 2 Corinthians.  It's a familiar section of Scripture to many, but hearing it again was so encouraging.  This has been on my heart:

"So [I] do not lose heart.  Though [my] outer self is wasting away, [my] inner self is being renewed day by day.  For this light momentary affliction is preparing for [me] an eternal weight of glory beyond all comparison, as [I] look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal." ~2 Corinthians 4:16-18