|IV Antibiotics, Fluids, and Tube Feeds|
With medical complexities such as mine you end up seeing many. many physicians. On my teams first line of defense I have five doctors that I see monthly, on the second line of defense I have another four doctors I see at least every three - six months, and on my third line of defense I have over ten that I see periodically for issues as they arise. It makes for a very crowded kitchen, and as you all know too many cooks don't make a pleasant meal. There will always be issues that arise between physicians, their separate clinics, and even sometimes their separate ideas for how my care should be managed. This can often lead to much unneeded confusion for the patient, leaving us feeling like a rag doll being pulled in different directions. Amidst all the disarray, there is one constant that we as recipients of healthcare need to remember; our care is exactly that, OUR care. What many patients don't realize is that you hire a medical practitioner, and you alone have the option to find a new one if your current is unsatisfactory; you are never stuck with a provider. I have had to learn his lesson over, and over again! While many times it did FEEL like I was stuck, I always eventually found another doctor to move onto. A clinician that you are comfortable with is a huge part of your healthcare, and well being. Never settle.
Last week I brought you all a disturbing update regarding my treatment from a physician I saw last Friday. My care was less than respectful; it was downright degrading. No patient ever needs to endure that. There will always be other doctors; though the transition from one provider to another is horribly time consuming and difficult, it is always worth it in the end. This week I wanted to share with my readers about a very special physician on my team, one who has made such a positive impact on my life.
My Gastroenterologist from day one has always put the patient first. She truly cares for an individual and is willing to go the extra mile. She has always let me take a strong lead with my health, and gives my opinion and ideas much consideration before we ultimately make a decision together. I cannot tell you how many times this woman has saved me from crisis. She is what every doctor should be; compassionate, attentive, and real. When she walks into the room I don't feel like a statistic or number, she sees me, she treats me, she understand me as an individual. We dig deep for new therapies, and work together in my healthcare. She has never shied away from calling me on the phone, or emailing me when I need her. Today was no different. We had an awesome appointment with a detailed explanation of my test results, and a solid game plan to move forward with. When I expressed my concerns she replied with empathy and reception.
I visited her Monday to go over the results of my Smart Pill Study, the test that was to track the transit time of my GI system so we could trace exactly where my problem areas were. The results showed strong abnormalities as we predicted. The pill seems to move through my stomach well, but slowed considerably when it reached my small bowl. The small bowl is the most important organ in the entire digestive track, it is responsible for the absorption of nutrients and minerals, 90% of all digestion takes place here. The pill showed that my small bowl is severely delayed, more than likely caused by fibrosis from Scleroderma. Due to this delay my organ produces to much bacteria and leaves my body unable to absorb essential nutrients and minerals such as iron, phosphate, calcium, magnesium, and many others. Once the pill made its way out of my small intestine and into the colon it had quickened transit time. It seemed to shoot right through the colon much faster than a typical patient. This heightened transit in the colon is caused by Gastrocolic Reflex, a reaction caused by a malfunctioning autonomic nervous system. This reflex triggers the colon to increase its motility and expel any byproducts of digestion left in the body very suddenly. This is actually quite uncomfortable and causes a lot of cramping, sweating, lightheaded, and tachycardia. This reaction is triggered by simply putting contents in the stomach... for those of you that catch the drift, that means EVERY TIME I hook up my tube feeds, or have to do a bolus water flush I have to immediately poop. It's quite inconvenient, especially when you have a weakened sphincter due to fibrosis. While none of these tests results are "good," we at least know what we are battling and can locate the proper therapies and treatments to combat these issues. Much of my digestive issues, while they stem from Scleroderma, also are in part from my severe Dysautonomia. My awesome GI doc was already way ahead of me and has referred me to a Autonomic Nervous System physician to treat my failing body.
On the good news boat my recent blood panel showed that the use of chronic antibiotics is finally helping to keep some of that SIBO at bay! We saw a large increase in my electrolyte panel which means I am finally absorbing bits of nutrients here and there! Yipe!
As a random side note I received a call from my Pulmonologist today expressing the sudden interest in scheduling an immediate Right Heart Catheterization. A RHC is a procedure in which a small incision is made in your groin, a long catheter is then fished all the way up into your heart where it then passes into the pulmonary arteries to test pressures. This test detects the presence of Pulmonary Hypertension. And no, you are not asleep for the procedure.
If you recall both my Pulm and Rheum were absolutely against this last week. Not sure what changed their mind but I guess they had "a long talk" after I left their office. Whether they decided of their own accord, from outside physician pressure, or maybe they read my blog post ;) I am just glad it's happening and we are finally looking into this crazy decrease in lung function. The procedure is schedule for next Friday!
Before I sign off on my update this week I want to give my readers a brief over view of the Autonomic Nervous System, and why it is so harmful when it malfunctions. The ANS is responsible for the regulation of our most principal involuntary body functions; it controls internal organ activity. It manages your breathing, heart rate, blood pressure, vessel dilation, digestion, body temperature, production of bodily fluids, the balance of electrolytes, and many other vital functions of the human body. As you can probably guess any one of these crucial functions malfunctioning could cause great awry in the body. When the ANS malfunctions a general term of Dysaytonomia is given, but there are many subsets of Dyautonomia that generate different responses from the body. They symptoms can range from a daily nuisance to life threatening; though most cases of Dysautonomia fall into the category of severely limiting ones quality of life. Patients are in extreme discomfort, and home bound do to their malfunctioning nervous system. There are unfortunately not many, if any treatments. The main goal of physicians is to address symptoms, and try to make the patient more comfortable; many patients due to severe damage of body systems however are bound to walking aids, feeding tubes, constant IV fluids or urinary catheters.
To give you a small idea of what its like to live with Dysautonomia imagine this scenario: Do a head stand for 10 minutes, immediately get up and spin in circles for ten minutes, now drink a large slushy and receive a tremendous brain freeze, then run until your heart rate is 150, all while having food poisoning on a 115 degree day in Arizona... Oh and your blood pressure is 70/40. Couldn't stay conscious huh? Neither could we... But all we did was stand up from the couch. Dysautonomia is miserable.