Wednesday, April 15, 2015

Glowing - Health Update

I finally received my AMT Mini One Button tube on Monday! My incredibly GI doctor squeezed me in between her already scheduled patients so we could place my brand new tube. For those of you who were following my previous CaringBridge Blog you know how much trouble my awful Mic-Key Button was been giving me. This AMT brand is suppose to be a more "hypoallergenic" option that is specifically contoured for a stoma. The balloon which anchors your tube has a larger volume capacity which helps prevent leakage and provides a tighter, more customizable fit. This tube is also much more low profile than the Mic-key, and is much more flexible. Immediately after placement I could feel the difference! This tube fits snuggly to my body, where as my Mic-Key was set high above the stomach. This tube also seems to move with me, instead of constantly flopping around.
If you are interested in the logistics between these two tubes please visit: Mini One vs. Mic-Key
I am very excited to see the difference this tube will make in the next few weeks! The swap went much smoother than previous times as well. The last few tube changes have been very painful, even though I have a deflatable balloon. This change seemed to go flawlessly with very minimal discomfort... though I will never fully get used to having a device pulled in and out of my organs. My doctor seemed to be very impressed with the AMT tube, hopefully she can now refer other patients to this brand if they begin to have trouble like I did. She always tells me I am teaching her, which makes me feel very helpful! I have so much respect for my GI, she truly does believe that a patients know their body best, and even lets me make decisions about my care. I could not have asked for a better doctor!
The best part about this new tube is the amazing glow in the dark feature! This tube is typical used in pediatrics so the creators decided to make the tube and extension sets glow for easier night time access. Such a stroke of genius! While I don't necessarily need the feature, it sure is fun to have!

Wednesday I had an appointment with my Scleroderma Specialist from UCLA. He comes to Seattle once a month to see patients, and I am one of the lucky few he accepted. This doctor is extremely knowledgeable, and also very frank. He is an 'all business, no smiles, trust no one' kinda guy... But he is the best! I really enjoy our sessions; he is the first doctor I have ever encountered that really drives a strong treatment plan! This appointment we talked much about the lack of testing that has been done recently on my effected organs. He was very displeased that UW had not kept up on my Echocardiograms, GI Tests, and a few other procedures.
He ordered quite a few tests that he would like done ASAP as the ones I have on record are at least a year out of date. His exact words were something like, "There is no way your results are this good. Either they are just too old, or they ran the tests wrong." Like I said, all business... lol
He also ordered some medication dosage changes, and prescribed a few new medications. We will be upping my Rituxan Infusions yet again to two rounds every 12 weeks, as compared to one round every 12 weeks. My next set of infusions will be late May, early June.
We covered my dry mouth/eyes (AKA Sjogrens) as well which has gotten quite out of hand. At this point I am using lubricating eye drops about 4-5 times a day, and must always keep water near by or I am completely unable to swallow. We will be starting a nightly dry mouth gel to help keep my teeth from rotting hopefully. My scalp has also been acting up, leaving a wake of bloody scabs and hair loss in its path, we still are not sure what that is all about. Urg.
I was given a prescription for my severe muscle pain and tightness (AKA Fibromyalgia) called Cymbalta. I am a slight bit apprehensive to take this medication as it is also a very powerful anti-depressant. I have heard wonderful patient stories about its success with pain management, but also horror stories about withdrawal side effects once they wanted to discontinue the medication. At this point in my medical journey I am willing to try. The pain I have been enduring lately has kept me bed ridden and I am ready to get the 'pep in my step' back.
So to be honest, I am not exactly where my doctors were hoping I would be. These repeated tests will give us a better idea of where I stand, but from the viewpoint of today I am not in the greatest shape.

Next week I go in to repeat my Pulmonary Function Test which will show my doctors if my diaphragm has gained back any of its function. If not I will be sent to a Musculoskeletal Pulmonologist to review my options. While I am not 100% sure what those options are, a diaphragmatic pacemaker, and chemotherapy was mentioned... But I am not going to worry about that until I get the results next Thursday.

Since I always like to try and end these health updates on a positive note, I do have some exciting news! This Thursday morning I have been asked to speak at a local high school as part of a fundraising project. I will be sharing my story, and a little bit about Scleroderma. I am so excited for my first "official" public speaking role! I cannot wait to let you all know how it goes.
I have also been asked to speak at an upcoming Autoimmune Seminar at a local University. I will be part of their Patient Panel and sharing my knowledge on "Chronic Illness in the Work Place." I am so excited to see these doors opening after my last door was slammed shut so quickly. Disease has taken so much away from me, but it has given me so much more! My goal is to make a difference in this world, and to have a purpose, illness has given me the opportunity.

Thursday, April 9, 2015

A Fresh New Start

Hello and Welcome to my new blog: A Day in the Life of a Tube Fed Wife.

I have decided to slowly transition my medical journey from CaringBridge, to something a bit more customizable and personal. This new site has multiple pages to visit; an About Me page explaining the reason for this blog, a page for my diagnosis story, and a few pages for information on scleroderma, feeding tubes, and more! I am excited to take my blogging to a whole new level, and hopefully share my insight on living with chronic illness to a broader spectrum of patients. 

Thank you to everyone who has supported Noel and I through this journey, and welcome to any new visitors who happened to have stumbled upon my site! 

Love, Chanel