But the big thing was that I was ill. Very, very ill. I had no energy at all. My first weekend at home I was so exhausted that I didn't have the energy to go to the grocery store, so I ate dry cereal with water until I could garner enough energy to get to the store. I ran intermittent fevers - up to 102 F. Because I had no energy, I slept a lot. And when I wasn't sleeping, I had no energy, so I watched a lot of movies and my most strenuous activity was beading. And I ached from head to foot.
This continued for a very long time.
When I was in Panama, my last few days, the doctor did a sputum sample to rule out TB. In that culture, a very rare bacteria, Stenotrophomonas Maltophilia, showed up. The doctor there advised me to get antibiotics from my doctor to treat this. So I went off to the doctor - slowly and totally exhaustedly. However, I also wrote a quick note to my doc so she would be prepared - perhaps looking this bug up to see what treatment was suggested. But she didn't do that. Instead, she used my email to tell her how to dress - in full-out Hazmat fashion! (and remember - this was PRE-Ebola!) She had a gown opening in the back, with another gown on top, opening in the front, covered by a lab coat, plus heavy duty gloves (think Playtex for the dishes!), and a respirator! I was totally floored - and vaguely humiliated. She immediately sent me to specialists - she simply could NOT handle having me in the office more than 5 minutes!
So I went off to the specialists - no, there's no TB (I could have told you this), etc. It quickly became clear that I needed to be seen by an Infectious Disease doctor, so she gave me a referral to UCSF. Who never called. I hounded them, but always got the run-around... it was SO frustrating.
I decided to change doctors. And I'm so glad I did, because my new doctor, Dr. Thomas Stern, is an incredible doctor. He took things quite seriously. And within a week, I had an appointment with an Infectious Disease doctor at Stanford!
During this time, I was on close contact with Martha Maduro and her amazing doctor daughters from Panama. They kept asking questions, and finally suggested that the constellation of symptoms suggested to them Chagas disease. Had I been tested for that? I said I would mention it to the Infectious Disease doc.
So I pulled myself out of bed one morning and set off for Stanford where I saw Dr. Brian Blackburn. Immediately when he opened the door, I could tell that he had made a snap judgement, just from seeing me - "fat, old, woman, probably hypochondriac") He asked some perfunctory questions, and said that he didn't think anything was wrong. I mentioned the diagnoses that my Panamanian doctor friends had suggested - most specifically, Chagas disease. He said that the Stenotrophomonas Maltophilia was a very "whimpy" bacteria - and probably played no role in my symptoms (true) He sent me over to the lab for some blood work (a LOT of blood for it!) and then sent me home.
When it came, Dr. Blackburn's letter said that he was sure that I didn't have an infectious disease, and that I should see a rheumatologist. He also said that the Stenotrophomonas Maltophilia was probably an artifact (and, in retrospect, it was clearly a red herring).
As the illness dragged on, David and I became increasingly uncomfortable with Dr. Blackburn's reply, so I asked Dr. Stern point blank if there was any indication that I had been tested for Chagas disease. He could find none, so he sent me to the lab for the test.
Some background: Chagas disease is endemic in Latin America. It is transmitted by the "Kissing bug" which bites and then defecates after its blood meal. It carries the parasite that causes Chagas, which is in its feces and which gets into the bloodstream when the victim scratches the (very itchy) bites. It has an acute stage immediately after the bite for several weeks (possibly months), and then it sequesters in heart and/or GI tissue. Some percentage of people (ranging from 15% - 50% depending on who you read) have very serious problems years later - sudden cardiac death, megacolon, megaesophagus, etc.) And usually die.
So when , several days later, Dr. Stern called me, saying that the test for Chagas was POSITIVE, it was horrifying! Because, when caught early in the acute stage, Chagas is curable. But once the parasite sequesters in heart and/or GI tissue, it is impossible to cure - only to delay. AND the drugs to treat it are not FDA approved and are ONLY available from the CDC! But only after they do their own serological tests. You have to be positive for Chagas on 2 of the 3 tests to be deemed as having Chagas. The drugs have horrible side effects - they are essentially like chemotherapy and have very similar sequelae. And, they may or may not work depending on the person.
As you can imagine, I spent the next week reading everything I could find on Chagas. As did David.
And then began the attempts to get the additional blood tests done to see if we could get (or needed) the meds from the CDC. Because this is a disease that is not seem much in the US (mostly only in Latin American immigrants), no one knows about it. After MANY blind alleys, I found a team in LA that specializes in Chagas! I called them and just happened to get the director on the phone late on a Friday afternoon. She said that, if all else failed, I could come down to LA and have them send the blood to the CDC!
As these things often happen, I made my flight reservations to go to LA and that day, my own doctor called - he would do the blood draw, and then we could get the blood to the Alameda County Department of Health who would send it on to the CDC. I cancelled my flight as soon as I heard that - and we got the blood off to the CDC.
I was fully expecting I wouldn't hear until the end of January because the Health Department told me that it took 18 days (unclear if working days or calendar days). So we went ahead getting ready for Christmas (with me still dragging). Dad arrived as did Anna Rachel and we had a fine time together. They both flew home the weekend after Christmas.
And on the following Monday, I got an email from Dr. Stern with the results from the CDC - NO Chagas! :-) I only had 1 of 3 (not 2 of 3) positive tests - so I officially do not have it!
Which doesn't explain the symptoms but which did lift the Sword of Damocles from over my head!
And so, we began a new year with no real diagnosis, but with a sense of relief.
+++++++++++++++
And now, it is February. Reflecting back on my time in Panama - and its sequelae - I am so grateful that I had the opportunities I did to go to a wonderful place with the most amazing people. The experiences were different from what I had expected, but equally wonderful. I am happy I went - and hopeful that my time there was helpful to the department and others.
Yes, I wish that I had not returned with whatever-it-is-but-not-Chagas. Yes, I need to do my part now to write the articles, give the talks, and do the things I promised I would do in my application to help foster understanding and cross-cultural relationships. And I will do this.
Thank you, Fulbright Commission, and all of the people who made this experience possible. And to all of those who made the experience wonderful. And to those of you who "came along" with me through this blog. I am filled with gratitude to all of you.
Thanks!
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