Sunday, November 15, 2015

POTS -- But Not The Kind I Keep In My Cubbard

There has been a pretty big transition in my life since I last posted. Unfortunately due to previous chemo damage, malnutrition wreaking havoc, and prior thinning from illness in general, my hair did not make it through my first round of Cytoxan. After stepping our of the shower last Friday I found myself with a large bald spot to the front right quadrant of my scalp. I decided to take this situation and make it one of empowerment, heading to the salon with my best friend and husband to shave my head. I had no idea what my head would look like under my hair, besides for the existence of an odd rash I have been battling due to my connective tissue disease. Thankfully as I sat in that chair watching my hair be sheered off a perfectly round noggin smiled back at me! lol I am actually kind of in love with my new do! -- Who says you need hair to be a confident, beautiful woman?!

My bald head, and a new friend!
Not much medically has been transpiring in my world as of late. I have been trying my best to stay away from the hospital for fear of germs since I chemotherapy has left me with a white blood cell count of 3... My poor little body! So far so good though, no colds, or even a sniffle has come from me! I have of course been continuing to get my weekly saline infusions however; gotta keep those fluids flowing! I did receive some test results from a few procedures I had preformed last month, the Sleep Study, and the Autonomic Nervous System Testing. While I have not reviewed the results with my physicians, I did get to read over the impressions from the interpreting physician.
The sleep study showed I have Moderate Sleep Apnea with my oxygen levels dipping into the high eighties. It also revealed that I wake an average of 24 times a night do to this condition, giving me barley even one hour in deep REM sleep. This would explain why I am exhausted constantly, and never feel rested upon waking. I see my Sleep Specialist this week to talk about sleep aid devices.
My ANS Testing unfortunately didn't have the greatest data due to my inability to preform a few of the tests adequately. Many of the breathing maneuvers that can indicate internal autonomic involvement were not done to a satisfactory enough level to produce data, this is because my lungs were to weak to execute them. The good news is that the tilt table test alone was able to give us a firm diagnosis of my dysautonomia subset: Postural Orthostatic Tachycardia Syndrome. What my physician thought was originally stand alone Autonomic Neuropathy due to my connective tissue disease, turned out to be a whooping case of POTS as well. POTS is a condition where postural changes, such as supine to upright, cause an abnormally large increase in heart rate (at least 30bpm.) Upon standing my vascular system has to work too hard to maintain blood pressure, and blood flow to the brain due to my faulty autonomic system which doesn't tell my vessels to constrict correctly. Patients end up having very low blood levels, or more specifically a decrease in the volume of blood plasma with positional changes causing: tachycardia, low blood pressure, and fainting among other symptoms. I have been prescribed quite a few different medications in an attempt to assist this condition, though the most helpful so far has been high doses of sodium; 6 Grams a day! This helps keep my plasma levels higher which wards off my fainting spells and severely low BP. I meet with my specialist the first week of December to discus the results in detail, and hopefully get a few more answers on how the POTS ties in with the Autonomic Neuropathy.

On set with the film crew!
On the calendar for me this upcoming week will be an appointment with my Rheumatologist to review my first chemotherapy labs, a consult with my sleep specialist regarding sleep aid devices, and of course some weekly fluids at the infusion center. Then, the week following I will have my second round of Cytoxan.
In other news, some wonderful awareness opportunities have been in the works lately!  I had the pleasure of filming a short documentary for a wonderful organization called Faith Counts this past week. The video will be in production over the next month and I cannot wait to share the finished product with you all! I also had the honor of speaking to class of nursing students at a college in my area. I was invited to share my personal Scleroderma experience with the future faces of patient care and couldn't have been more excited! It looks like there will be a few more opportunities to share my experience in this manner and I am really looking forward to it! I love speaking to medical students because I get to use all the acquired medical lingo from my many years spent as a professional patient -- and I don't even have to explain the acronyms! haha I cant wait for my next college speaking gig in January!

12 comments:

  1. Seriously, you look stunning with no hair! Hair is so overrated, lol. I'm sorry yours didn't make it through the Cytoxan, but you look fabulous. My favorite is how you can tell you still feel beautiful and confident in your picture. Hugs from Austin.

    ReplyDelete
    Replies
    1. Aw thank you so much Gina! I love that you can still spot that! Hugs!

      Delete
  2. I've got to agree with Gina B. You still look amazing!! :)) That had to have been a very odd experience getting all of your hair shaved off... Tell me about it of you don't mind, Chanel.

    ReplyDelete
    Replies
    1. It was an odd experience for sure! Mostly though, it just felt good. I cant explain it really, but it felt like a weight was just lifter once it was gone! Like the last thing that needed to change before I could really move forward empowered to fight Scleroderma! I really loved the experience! Watching it all come off was nuts, plus the razor on the back of my neck tickled a ton! haha Random Chanel thoughts! ;)

      Delete
  3. Hey Chanel, you look absolutely stunning. You are so empowering and I feel priveldged to have gotten to spend some of my most memorable childhood days jumping off mats and trampolines at the gym with you as we watched all the other gymnastics classes! Anyways I just wanted to say how inspiring you are and what an incredible woman you've become. I love you Chanel! -Marissa Danekas

    ReplyDelete
    Replies
    1. Hello Mars! Aw thank you so much! I am so glad we have reconnected after all these years! So many fun memories to reminisce on. ;)

      Delete
  4. Chanel-you're amazing! Your new "do" is just more evidence of that;) Thanks for the update.

    ReplyDelete
  5. I'm sorry to hear that the results from the torture table were worse than expected. How disheartening... :( I'm very curious about how it makes you feel when you are able to teach people inside AND outside of the medical community about Scleroderma? Be honest ;)

    ReplyDelete
    Replies
    1. hehe ;) You always ask the hard ones! ...Just kidding! I love to educate both! I mean at one time in my life I was outside of the medical community and had to have everything explained to me as well! So I try to not be frustrated by baseline questions because every inquiry is a wonderful awareness opportunity! I never tire of spreading scleroderma info, even in the simplest of terms!

      Delete
  6. Thank you for sharing with us. You are a shining star!

    ReplyDelete
  7. A friend of mine also has POTS and after speaking with her about it in depth I believe I may have it too. I'm just a little nervous about taking the tilt test. Tired of medical tests you know? Anyway, thank you for sharing and thats awesome you were invited to share your story! Praying for you and your family! Happy Thanksgiving!

    ReplyDelete
  8. Okay, so I'm going to stop whining about my severely thinning hair--RA medications, medications to treat the chronic sinusitis, age, and/or my immune system attacking my thyroid again? Seriously, you're beautiful, with or without hair, inside and out.

    ReplyDelete