Thursday, October 13, 2016

Professional Grandma: Osteoporosis + Health Update

Well, I might as well sign up for Life Alert and trade my iPhone in for a Jitterbug. I always knew my hobbies (aka knitting) are similar to a Grandma. Apparently my body is now following suit!


Earlier this week I had a bone scan. Between mast cells infiltrating GI tract impacting absorption, mast cells in bone marrow, steroid use in the last year, and Ehlers Danlos Syndrome, I have numerous factors leaving me prone to bone complications. The scan revealed that my bones have sustained damage from my disease. And yesterday I was made aware that I am not yet 20 years old and have an osteoporosis diagnosis.

My weight remains critical at 81 lbs. I run a full can of Neocate and/or Elecare Jr formula via J tube daily. It is baffling watching the numbers on the scale decrease, despite any increase in nutritional intake.

Intermittent pancreatitis and erratic blood glucose levels are an issue also. The glucose regulation was an ongoing symptom years ago. However, it resolved itself during my 10 month remission-ish period, only returning if I ingested a trigger/food I am reactive to. When this was previously investigated, my labs appeared like I am a Type One Diabetic where I do not produce insulin. With low readings more than high, this does not make sense.

Either I am not absorbing nutrition properly, the wacky pancreatic function is interfering, or a combination of both. My mast cells are out of control. The simple act of standing is triggering reactions. I am unable to even do water orally or via G (stomach) tube without it initiating reactions. Anything via J (small bowel) tube causes a continual state of reactions too - just not as severe as when in stomach.

The craziness of my mast cells puts a damper on treatment (and nutrition). My team of doctors are in the works of forming a plan. There is hesitancy, as they are all fearful of causing a bad situation to become worse. It is beyond frustrating when none desire to make an executive decision. I realize it is an impossible situation. There is no way to truly know if it is best to move forward with a treatment that has the potential to wreak havoc or to continue to do what is currently being done (nothing).

Bone Scan
The sole two changes made are: rotating elemental formulas (Neocate Jr, Elecare Jr, and Neocate Splash) and weaning off of the continuous pepcid pump (little bits infusing 24/7/365) back to the normal administration of 20 mg 2-3 x a day (every 8 hours). I am on my second day since the wean. My body is fighting back some. It is expected, as I started the pump in February 2016.

I am hoping that perhaps these changes will initiate weight gain. Since running intravenous pepcid continuously is not studied, who knows if it could be a factor. I am unsure how much is wishful thinking though because this is not a "new" phenomenon.

The ideas proposed are talk of full Total Parenteral Nutrition (TPN), lipids only TPN (supplement fat cals), pancreatic enzymes, and the like. There is contemplation of special autoinflammatory testing to be completed at Duke. It is in the referral process. It was suggested by oncologist who specializes in Mast Cell Disease to rule out causes of my crazy mast cells.

My last spell on full TPN was a complete disaster with codes called, which contributes to the uncertainty. And when I am barely tolerating water without rebounding reactions, none are jumping to volunteer to throw random medications/enzymes at me.

There is no good choice. The entirety of my circumstances is definitely an incentive to place full trust in God, not doctors. God is able to work through them, yes, but they do not hold the answers. They are only human.

Now, if you'll excuse me I must get back to my knitting! There is lots of it to be done prior to the arrival of Christmas!!