Wednesday, July 26, 2017

day +204 post hsct update

Remember when I said, "lets hope it isn't gastroparesis?" Well, turns out, it's gastropareis. Bummer. Unfortunately, the digestive issues I was hoping would chalk up to some sort of virus was definitely delayed gastric emptying, aka gastroparesis. This is often a comorbidity of scleroderma, and is the next logical sign of progression after esophageal paralysis. This has lead my team to believe that my systemic sclerosis is once again active, which would garner a diagnosis of relapse post HSCT. However, I am still holding out hope this is just a bump in recovery since I am so young post HSCT. While my docs are pretty much convinced my transplant has worn off, I am optimistic that with the proper immune suppression, we can hold off, or at least slow any further damage that will accrue.

July 

  • My gastric emptying study shows moderately delayed emptying. The nerve that tells the soft muscles to move, called peristalsis, is damaged - so it's not sending the correct signal to move food through to the intestines from my stomach. This causes my stomach to hold onto food longer than it should, equaling serve cramping, distention, bloating, vomiting, and nausea. Basically, the food stays undigested in my body until I eject it. Gross. Unfortunately, this requires the use of a feeding tube that bypasses the stomach so I can get proper nutrition. 
  • I saw my GI physician post GES, who wasn't fabulously optimistic I would get to continue my life without a permanent feeding tube. She schedule a GJ feeding tube surgery for about six weeks out, that way we have some time to trial a few medications. She prescribed a med called Domperidone, which essentially moves the stomach muscles for you; it also blocks the receptor in the brain that controls nausea. The medication isn't FDA approved even though thousands of patients use it for gastroparesis. So while I wait for it to ship from Canada, I am trying out Erythromycin - an antibiotic used to speed up gastric emptying. I take it around the clock, but especially before I try to eat anything. Unfortunately, these drugs are subject to the consumer, which means they may or may not work. So far, I have seen a little improvement from the Erythromycin, but not enough to eat an entire meal. Just a light snack, or drink - both of which have to follow the strict gastoparesis diet of low fat/fiber. I have experienced much less nauseas since starting the meds at least, so thats a win! Unfortunately, that means I am stuck with my NJ tube until surgery placement, or until/if the domperidone works. Urg. Chances are I will need the tube, and the domperidone, but in a perfect world, I would be able to eat and not need the tube! 
  • We also scheduled an appointment with my Pulmonologist, Rheumatologist, and Autonomic Specialist. Since my DLCO decreased by 22%, and the swallow study showed I am not aspirating, we are now worried about systemic sclerosis lung progression. I will be repeating a PFT here with my Pulm, and following up to diagnosis whatever this issue may be. My Rheum will probably throw me back on some immunosuppressive treatments to hold off this damn disease until we have a better option, and my Autonomic Specialist can hopefully get my increased Dysautonomia symptoms under control. I'm exhausted mentally, but physically feeling okay!
  • I spoke at the National Scleroderma Conference in Phoenix last weekend. I always enjoy connecting with other patients, and hearing about all the new medical advances! 

I'm going to be taking a short social media break. I just feel I need to focus on other things right now. A little cleanse/detox from the turbulent online world is good for the soul sometimes. It kind of breaks my heart, since I absolutely LOVE connecting with other patients and my readers - but please understand, this is for my mental health. Transitioning back to the world of chronic illness after have such an incredible, trouble free 6 months has been mentally, and physically tasking - but mostly mentally. I will not be answering messages, or comments until further notice. I am so grateful for the love and support I constantly receive, but right now I just need to focus on what's best for my overall health. I may occasional post a quick update, but won't be divulging into replies. I promise I will be back soon! Thank you for your understanding at this time. 


xoxo Chanel