Life with a Flare

Remember that time I tried to blog for a week straight and failed miserably? It wasn't totally my fault, I ended up finishing out feeding tube awareness week at CHOP due to an out of place tube, how ironic. On the brightside Valentines day in the hospital is now something I can check off my bucket list along with Halloween and my birthday. I haven't talked much about my attempted transition to adult care. So far I have cardio and a GP and I am not getting very far with the rest. My peds GI had mentioned to me that usually they transition patients at the end of their first year of college but I had been really sick and was still pretty sick so I did not have to transition quite yet. She did want me to see an adult GI at Temple Hospital because he was the top doctor in the country for gastroparesis and might have options not available in pediatrics, and possibly at some point I could transition. He had one non FDA approved medication I tried and failed and then he wanted me to ...

What Joan couldn't manage to post everyday for a week? Shocker right? 3 for 4 isn't bad though. So the topic I missed was feeding tube myths! Boy have I heard a lot of those! Myth 1: You need to be in the hospital if you have a feeding tube. (Thanks Red Band Society for keeping this one alive and well) Truth: Actually feeding tubes keep people out of the hospital. Feeding tubes allow people who are unable to eat enough food orally to stay out of the hospital. If you are like me and need constant fluids as well as the calories then if the feeding tube is unusable even for a few hours you end up in the ER but as long as the tube works you are good to go! Myth 2: Only babies, the elderly and coma patients have feeding tubes. Truth: There are actually over 300 reasons a person may need a feeding tube. Many of these can affect people of any age and they do not always look sick. Myth 3: You look too healthy to need a feeding tube. Truth: Many people with feeding tubes loo...

Certain conversations will forever be ingrained in my memory, one of them is the conversation that I had with my GI on July 9th. After erythromycin had stopped working we were scrambling to get my symptoms under controlled. Reglan another gastroparesis med (that had many scary side effects) failed to work for me and we had maxed out my dose of Periactin. I was only getting in about 300 calories a day and feeling it. To add to the mess I started not tolerating ensure. And trust me after throwing up ensure you will never want to touch it again. After increasing my dose of Periactin we gave it a few days to kick in but by July 9th I had to call and after explaining where I was at with the nurse I received a call back from my GI within an hour or two. Whenever a doctor calls you back that fast it is not a good sign (although in all fairness my GI does usually call my back in 24 hours). She asked how I was and I as always replied "okay." "Well it does not you are doin...

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think. Day 1 : Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary. I am tube fed because I have gastroparesis and dysautonomia. Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestin...

Many people have asked me how and why my cardio decided to do IV fluid therapy. I will preface this with I have a very specific set of circumstances so what works and doesn't work for me will not be the same as for others. We have known for as long as I have had Dysautonomia symptoms that IV fluids made a huge difference. When I first fainted during my hospital admission in July the doctors immediately upped my fluid rate from 100ml/hour to 150ml/hour during the day and I had no more issues. Furthermore any time I have been put on IV fluids my heart rate stabilizes and doesn't jump when I stand. During my hospital admission in November I was actually kept an extra night for fluids because my body just couldn't seem to wean off them. In the recent months I have been in the ER about every other week for fluids. So while I never did a trial run like some people have ask, we knew IV fluids would help me. Fluids was not the first treatment option I tried and is not the only ...