Wednesday, January 20, 2016

Hope On The Horizon -- Health Update

Today I saw my Scleroderma Specialist from UCLA. I always highly anticipate his appointments for a few reasons:
  1. He is by far the most knowledgeable physician on my team when it comes to my disease. 
  2. He catches all the odd results from my test and procedures my other doctors seem to miss. 
  3. He is a hard hitter, and I like that. Facts drive the visit -- not sugar coated embellishments.
Today was a three month follow up to go over my last set of procedure results, and check in on how my Cytoxan infusions were going. Everything seems to be stable currently, no dramatic decreases in health vitality from where I was when I saw him in October. He reviewed my last PFT, Sleep Study, and Autonomic Function Test. All of which seemed to be read in concurrence with my other physicians. He did notice however that my Sleep Study showed I have a form of Myopathy; a disease of the muscle tissue. While he didn't divulge into details about the type of Myopathy, or why he believed the test presented that, I have no doubt he is right. I have a history of a muscle disease that has seemed to elude my doctors since day one of my diagnosis. It could be a solid factor in why my airway continues to have trouble staying open when I sleep. We also saw a drastic increase in muscle weakness this appointment during an in office strength test. I could almost not at all push against force with my arms or legs. I have been noticing growing muscle fatigue in my day to day life and was not surprised by these findings. My physician decided twice weekly Physical Therapy would be extremely beneficial to regain my strength over the next eight weeks. 
We spoke regarding my Cytoxan experience over the last few months, which as you all know has been turbulent. We decided that due to the severity at which I was vomiting my last infusion I will not make it up to the highest dosing. My body just cannot handle that last 250mg jump to the next tier -- and I am perfectly fine with that decision. lol Unfortunately that means I will stay just as sick as I was during my last round for the next 9 months, but no sicker! (Though I am not sure if being sicker than that is even possible.) Thankfully he also prescribed a new nausea med since the current medication (zofran) wasn't impacting me seemingly at all! We will be trying Granisetron which was specifically designed for chemotherapy patients. Woohoo! I also was prescribed Valium by another provider if all else fails. haha At least I can sleep through feeling like crap!
Last but not least, we took a heaping help of blood work, which I honestly didn't even ask the reasoning for. By the amount of vials I am sure it is something specific though. I guess I will find out when I get my patient visit summery, and test results in about two weeks. I did had my favorite Phlebotomist today which is always a treat! She is my age, and I just love chatting with her -- we may have chatted a little too long though as I left the room and there were at least 4 patients in line ;) Oops! 

In other exciting news, my oral intake has been really coming along! Squishy, soft foods like ice cream and yogurt have been easily sliding down my esophagus, and successfully staying put! Luckily, my stomach still has a enough peristalsis to move foods like this through. (Though if it has any acidity it will come right back up and pain me for hours.) Unfortunately I completely forgot about the whole SIBO (Small Intestinal Bacterial Overgrowth) interaction with dairy when I undertook this oral excursion! Dairy is basically super food for the bacteria, so you can guess how my day ended -- well actually the entire next day if we are being specific. Let's just say there wasn't even enough time to pull over the car. Yikes. So I am on the hunt for pureed foods with no dairy, or acidity. Any ideas? At least I am making progress even if it's one step forward, two steps back right? 

I thought I would update you all on my home infusion experience as well. So far I have met some wonderful healthcare professionals. Each week a new nurse comes to my home to access my implanted Power Port with a Huber needle. This is a sterile procedure and must be done exactly right. The pressure is on! lol Once it is accessed the needle stays in my body for the next week as I run infusions of Saline to keep my body hydrated. (Yup, I set up all the equipment, and flush the Port just like nurses do at the hospital! Patients receive training the first day home health care begins.) So far home infusion has been amazing, and I absolutely love running my own hydration bags! The convenience of not leaving my house is wonderful and lets me accomplish many things during that time where I would otherwise be sitting in the hospital. Below I added some photos of my day to day supplies to give you a better idea of what infusions look like at home!

The giant Huber Needle that lives in my chest -- Nope doesn't hurt!

The IV pole I drag around my house -- and my rad jellyfish!

It is odd to see medical equipment like a full IV pole outside of a hospital isn't it? Sometimes I scare the UPS guy when I answer the door all hooked up! lol Chemo is Friday so don't expect to hear from me for a while! I will be puking, and hibernating. Sounds fun huh!? I have an appointment with my primary Rheumy next week though so I am sure you'll see an update by the end of January! 


  1. My building manager always seems to come in when I am doing an infusion. I think he was super freaked out the first time but is used to it now.

  2. Coconut ice cream! Also there is a paleo sweet book that has mexican chocolate mousse that is dairy free and yummy. So happy and exciting to hear good news . But definitely find coconut ice cream. It is dairy free. "Sooo good" is my fav brand of diary free products