Bronchitis Update

Well, I've officially filed a complaint against the ER doctor who "treated me" on Sunday. I have been having severe chest pain and difficulty breathing due to inflammation, likely from a viral infection, for one week. On Sunday, I had a severe episode with high blood pressure, elevated heart rate, elevated breathing rate and emotional agitation. I could not breathe. The ER doctor prescribed a medicine I was allergic to, did not prescribe an inhaler despite my history of asthma, and wrote to my primary care manager that I had a panic attack and I needed a psych eval.

Two things. First of all, if you have chest pain and difficulty breathing, you should go to the ER. Second of all, if I had been given an inhaler and a breathing treatment, then I probably would've been able to work this week instead of being at home in severe pain. 

I called my primary care manager, and they have not had any appointments for the last two weeks, while I've been struggling with this double infection (bacterial sinus infection and viral bronchitis). So I was sent back to the ER yesterday, because I could not even get out of bed. Low and behold, after a breathing treatment, my blood pressure and heart rate went down. I had very severe inflammation in my chest. They have not officially found the cause of the inflammation, but it seems most likely that it is a viral infection, since my labs have come back normal, except for an elevated white blood cell count.

I feel like screaming

Those of us with chronic illnesses are used to two distinctly different receptions at hospitals, clinics, emergency rooms and primary care providers. This dichotomous reaction often leaves us frustrated to the point of tears, because we know something's wrong with our bodies, but we don't usually know what is wrong.

The first reception is the overwhelmingly pleasant surprise when a doctor, nurse, or other healthcare professional recognizes our plight, and treats us with dignity. These healthcare workers tend to ask reasonable, chronological questions to help parse new symptoms from chronic symptoms. They also tend to ensure that their prescriptions are personalized to our health needs, so we recover as quickly as possible.

That was not my reception at the ER tonight.

I've been sick for three weeks with a severe upper respiratory infection. It started out with symptoms similar to laryngitis (sore throat, post nasal drip, yada yada). When I started feeling worse a week later, I went in, expecting to be diagnosed with bronchitis or a sinus infection. Much to my chagrin, my primary care provider could not see me, and I saw a resident instead. While I have the utmost respect for all healthcare workers, this particular resident accidentally prescribed me amoxicillin (regular) instead of Augmentin (combo). While my infection did not evolve into pneumonia, thanks to the amoxicillin, my sinus infection got considerably worse, and I called to make an appointment with my doctor a week later. They sent me to the emergency room, where I met an amazing nurse practitioner, who was familiar with my particular immunodeficiency condition, and who made sure I had steroids to reduce the inflammation in my chest, and the rest of my body.

That was two Fridays ago. Last Friday, I was not recovering well, after sleeping for the entire week, so I called my doctor again in the morning to make a same-day appointment. Again, she could not see me, so she sent me to the ER. I saw the same amazing NP, who extended my antibiotics and upped my steroids.

However, the inflammation has continued to get worse. Needless to say, I've been in bed for about 10 days now. My chest pain and pressure is still increasing, and I've started retaining water. I've gained at least 5 pounds of water weight in 1-2 days. I sweat constantly, and it's difficult to eat or drink. I have a headache, I'm dizzy, and today my feet were so swollen that I couldn't put my tennis shoes on. If you Google the symptoms, you'll get acute renal insufficiency or heart trouble. But the truth is that it's inflammation, plain and simple. Because of my allergy to OTC non-steroidal anti-inflammatory drugs, there is nothing that I can do at home to reduce the swelling.

So I did the one thing I knew I'd be instructed to do, if I called in to get an appointment with those specific symptoms. I went to the ER. The VA doesn't take chest pain in young females lightly.

When I arrived, I got treated as if I was a hypochondriac having a panic attack. My blood pressure was 130/74 (normal - 105/60). My heart rate was still in an irregular sinus tachycardia, and I was so distressed that I couldn't read or play on my phone. I could barely talk to the doctor because of shortness of breath. He listened to my lungs and heart and sent me home in tears.

So tomorrow I get to call the appointment line and BEG them not to tell me to go to the ER. And I get to do it all without sleep, because doctors no longer believe in pain medicine other than NSAIDs, which I'm allergic to.

I feel like screaming.

My Research on Auditory Dysfunction at the University of California Riverside

Good morning!

I'm finally starting to feel better from my severe sinus/upper respiratory infection.

There's been quite a bit of positive attention to my research on auditory dysfunction at the University of California, Riverside, including a feature in UCRToday and on our local NPR station!

I'm conducting research on auditory dysfunction (AD), a neurological hearing disorder that affects combat veterans with blast exposure. Some level of auditory dysfunction is present in the majority of blast injuries, with or without a diagnosis of traumatic brain injury. The neurological damage to hearing is progressive, and is not currently a focus of initial diagnostic testing for patients without external hearing loss (probably the only hearing test you've had). However, although audiologists at Veteran's Affairs hospitals are conducting research on diagnostic tests to evaluate auditory dysfunction, including our collaborater F. Gallun, there are currently no treatments for AD.

We are using crowdsourcing through experiment.com to try to raise start-up funds. Over the last quarter, our video game development was stalled due to a lack of funds. Anything you can contribute would be much appreciated and very important to our work!

My research focuses on brain training through specially designed video games. My principle investigator (PI) and graduate advisor, Aaron Seitz, PhD, has successfully conducted similar research on the visual system. Dr. Seitz's multi sensory approach to perceptual learning led to better vision tests and significantly improved batting averages for the UCR baseball team!

We hope to develop a non-pharmacological approach to prevent progression of AD, and to develop diagnostic tests that characterize AD. Our collaborators at the VA will contribute to our clinical tests, but currently, we are testing the diagnostic tests, psychometrics (determines thresholds and sensitivity) and brain training on normal hearing young adults (aka UCR undergrads).

Check out our page on experiment.com!

Atopy topic

Best alliteration ever. ...moving on.

I have finally been diagnosed with an immunodeficiency disorder called atopy. The term atopy refers to a complex disorder characterized by chronic sinusitis, asthma and eczema, but it leads to multiple severe allergies to everyday exposures, such as (my list): dust, shellfish, eggs, milk (all components), sulfa preservatives, and latex. I also have two severe innate (born with) allergies to salicylates and sulfites. If you're curious about the list (which includes coffee, tea, chocolate and red wine), here's a link:

http://my.clevelandclinic.org/health/diseases_conditions/hic_Allergy_Overview/hic_Food_Allergies/hic_Special_Diets_For_Food_Allergies

This diagnosis is what Dr. Drew tactlessly calls a "garbage bag diagnosis." Basically, it's any condition with an unknown etiology (cause) and no effective treatment plan or cure. I now have three of those conditions: endometriosis (innate), atopy (innate), and neuropathy from an injury in the Army.

However, atopy does have apparent distinct diagnostic markers, and a bleak prognosis. Untreated, atopy mimics IBS, ulcerative colitis or celiac disease. GI problems that are presumably caused by severe food allergies and, hence, atopy, are usually tagged "irritable bowel syndrome." And, admittedly, doxicycline, an IBS treatment, is helping quell some of my GI symptoms. Getting rid of inflammation in any part of my body is super important for decreasing the likelihood of further complications. Additionally, because rheumatoid arthritis and fibromyalgia run in my family, I have a high risk of developing lupus or rheumatoid arthritis, which are related genetically, or fibro.

Treating inflammation in atopy is especially difficult, because many people with atopy have a rare, innate allergy to salicylate and sulfate/sulfites. This means I'm allergic to aspirin, ibuprofen, aleve, and all related drugs. The only OTC pain killer I can take is Tylenol/acetaminophen, and it doesn't adequately treat anything other than fevers.

Additionally, I'm on multiple antihistamines (allergy meds) and inhaled corticosteroids (allergy/asthma meds) in order to try to decrease the number of chronic upper respiratory infections. I currently have a mild case of pneumonia. I can't sleep, because I can't lay down or my chest aches and I can't breathe.

But, I'd like to finish with the good things:
1) I have a diagnosis. This is extremely important, because it validates my description of my disorder.
2) My primary care physician and allergist are working to try to find a combination of inhaled corticosteroids to help manage my disorder.
3) I met an amazing nurse practitioner who prescribed me ponaris (eucalyptus oil), which helps heal the endothelial (mucus) lining of my respiratory system.
4) Dicyclomine works wonders for my GI symptoms (but doesn't treat any of the allergies).
5) I have an amazing research project - which you can check out at experiment.com/canyouhearthat.

I hope you are well!