"I want my life back. // update: The new treatment did not work - it made me even worse. We had to discontinue it over the weekend because it put me in a dangerous situation. We were all hoping things would resolve quickly. I had my port surgery scheduled for Friday, which everyone wanted me to be off of tpn (IV nutrition) for. Things were pushed too quickly after the setback and introducing food did not go well at all so my doctors are making me stop before the reactions get too out of hand. My surgery got cancelled being that I am unstable again. It is crazy how fast one thing can change my health! So generally I am feeling pretty lousy. We were all trying to avoid having to send me home on TPN and with a PICC line due to infection risks; however, it may be a couple weeks before I can retrial food. In the next couple of days I will be sent to manage everything at home with my usual IV meds, TPN, as well as emergency medications. The situation will be reevaluated in a couple of weeks and I will be readmitted for my port surgery once in a safer place health wise. The good news is that my doctor found a surgeon willing to do the surgery using only a local anesthetic to avoid another setback!
Once the port is placed in my chest, that will be used to deliver the IV medications to control everything until I can see a Mast Cell Disease specialist who can coordinate my care with my doctors here. They do not feel comfortable trying anymore treatment options without his input. My appointment isn't until April 8, but I am on the cancellation list."
[color=#0000FF]#MastCellDisease #mastocytosis #ehlersdanlossyndrome #chronicillness