I have had so many individuals try to coax me into eating, "Come on, one bite wont hurt!" or "It's thin you can swallow it!" What they aren't grasping is one bite in fact will hurt, and while yes something may be thin enough for me to swallow I cannot digest it, causing extreme discomfit for days at a time. Perhaps my least favorite is when people see me with food that I am bringing home to my husband, then implying something along the lines of, "Good on ya! Show that disease whose boss!" Like the act of simply trying to eat will make my digestion better. That is like telling a Diabetic, "You don't need that insulin, it's giving into your disease! Good for you for not taking it!" Just like me, Diabetics have an organ that DOESN'T function, not taking their insulin will only hurt them, similarly, eating food will only hurt me.
Now that that is all cleared up, lets move onto my weekly health update. Monday night I had a Sleep Study preformed at a hospital down town Seattle. This is a test that involved being hooked up to a ridiculous amount of electrodes, machines, and other devices to monitor your sleeping habits, oxygenation, carbon dioxide, and brain activity. The reason behind this study was mostly to look for the possibility of Sleep Apnea, but also to monitor my carbon dioxide levels since my diaphragm doesn't function adequately. Basically, they want to make sure I am not poisoning myself while I sleep. I also have very poor sleep habits, restless legs, teeth grinding, waking every ten minutes, extreme restlessness, and morning fatigue. We are hoping this study will give my Pulmonologist and Sleep Specialist a better idea on exactly what is going wrong in my body at night so we can improve these poor habits. A good nights sleep is extremely beneficial for someone in my position, and I almost never get that satisfaction, Upon entering the study room I was pleasantly surprised! It looked much like a upscale hotel, it even had a fancy tiled bathroom! The bed was large, the room was peaceful, and my sleep tech was very easy to work with. After all my equipment was attached, which equaled about 45 minutes of electrode placement, it was time for the study. Literally all I had to do was lay there and fall asleep. The tests results in so much data that is take weeks to accumulate so I wont actually find out the results till the end of October. Unfortunately it turns out I was allergic to the tape and adhesive they used to secure the electrodes so I had quite the crazy facial rash for a few days after the study! Here is a silly picture of all my equipment!
|Lookin Fab at the Sleep Lab! lol ;)|
Wednesday I was off to an appointment with my Primary Care physician. This particular doctor knew me way before I became seriously ill. She has been my family doctor for close to ten years! I never really saw her for more than sports physicals and yearly check-ups though. Now I see her pretty often since the ER's always make a follow up appointment with your PCP after a visit! lol She is wonderful though and stays very up to date with all my other specialists. She even gave me an Advanced Care Manager to assist me with my health care! She is also wonderful and has been so helpful in setting up infusions, order home healthcare, and just checking in from month to month. At this appointment we mostly talked about my recent ER visit for the suspected Stroke. She definitely believes I had a TIA (Mini Stroke) as opposed to the Hemiplegic Migraine, though she said only time will tell for sure. She prescribed a small dose blood thinner to be started, one I have actually been on before but stopped taking about a year ago... Guess I shouldn't have stopped! haha She also prescribed weekly Saline Infusions since I am having such a heard time staying hydrated. Hopefully those will start as early as next week! We just have to wait for the approval from insurance which as you know can be very slow! (I am still waiting for the Cytoxan approval that was prescribed last month!) Last but not least we ran a bunch of blood panels. I was kind of sad because my favorite phlebotomist wasn't there today... I always love chatting with her!
I finally received the notes from my visit with my Consulting Rheumatologist from UCLA. He always has the best transcribed notes that in detail account our visit, as well as his interpretation of my latest tests and procedures. Much of the notes were similar to the information shared with me in office, though there was one test that he views after our meeting: my latest HRCT (High Resolution Cat Scan.) As you know the HRCT is extremely important for a Scleroderma Patient as it gives a clear picture of what is happening inside the lungs. My Pulmonologist who had the test preformed said he thought the test was clear, but according to my UCLA Physician the test was anything but. This is why I am SO glad to have him on my team! He knows exactly what to look for and how to aggressively combat these issues due to his extensive research into this disease. According to the notes there was early "ground glass, fibrosis or honeycombing in the lower lobes of both lungs." Those terms are simply names for radiology findings of specific types of scar tissue in the lungs. What this means is that the scar tissue (fibrosis) that has found its way into my skin, blood vessels, and most recently my digestive track, is now starting to manifest itself inside my lungs. This is called Interstitial Lung Disease, a type of Pulmonary Fibrosis caused by Scleroderma. This was of no surprise to me, or my physicians. With Systemic Scleroderma on a path such as mine it was only a matter of time. There has actually been a few studies done showing that esophageal involvement directly correlates with lung involvement. (Study found here!) The more severe the esophageal involvement, the more severe your lungs will be involved over time. As I have complete aperistalsis (paralysis) of the esophagus I can only imagine how bad my lungs will get if we do not attack this fibrosis immediately.
If left untreated progression and death are imminent, however; with proper treatments such as Cytoxan, fibrosis in few cases can be halted. While you cannot fix previous scaring, halting progression is a great goal! This new scaring of my lungs is the reason why my recent Pulmonary Function tests have been so poor. Within just a few months this beast of a disease has dropped my DLCO by 20%, that is how fast things can progress with Systemic Scleroderma. Hopefully I will be one of the lucky patients that finds great results from Cytoxan!