Mystery Diagnosis Part IV

That afternoon, as I alternated between napping and nausea, I managed to send an email off to my doctor at Infectious Disease informing her that I had a fever of around 101F. She responded telling me to come into the office the next morning and that she would squeeze me in between appointments. She also slipped into the email that the sensitivity testing on my mycobacteria was almost complete, and it looked like the treatment would involve 3 different antibiotics, at least one of which was contraindicated during breastfeeding. She asked if it was possible for me to wean Ruby as soon as possible.

As silly as it sounds, my greatest concern during this whole process, even when I believed there was a chance I had cancer, was that I would not be able to continue breastfeeding. Even though I had already enjoyed a year and a half of successful breastfeeding (save the 3 months in the beginning), it had always been my hope to wean naturally and at Ruby's own pace. Even though we had already dropped several nursings during the day, and Ruby was getting the vast majority of her nutrients from solid food, she was still quite attached to the nursings that remained. The day I got my MRI with contrast, I was told to abstain from nursing for 24 hours. However, Ruby was so upset demanding to nurse when I got home that I eventually gave in and nursed her anyways. Ruby has always had a lot of trouble with transitions and changes to her routine, and the thought of abruptly discontinuing breastfeeding, a routine she and I have had for the duration of her life, felt devastating to me.

The next morning Steve accompanied me to the Infectious Disease clinic. My doctor gave us some more information regarding the course of treatment. She told us that the treatment would be long-term, lasting at least 4 months, and that one of the antibiotics would have to be administered IV. Therefore, I would need to get a PICC line inserted into my arm so that I could administer the drugs myself several times a day. When I asked about the potential side effects, she admitted that one of the drugs in particular had several known toxicities including possible damage to the kidneys and to cells involved with hearing. Therefore, I would also need periodic tests to monitor kidney function and hearing. She said that although the sensitivity testing was not totally complete, if necessary they could start the treatment immediately.

I felt like I had been hit by a mack truck of unfortunate medical news. Not only due to my reluctance to discontinue breastfeeding but also my concern for the risks to my own health, I was very wary of starting this course of treatment. Moreover, over the course of the many weeks that it took to reach this diagnosis, the swelling in my parotid gland had begun to improve on its own. Since the only measure of success for the antibiotic treatment would be clinical improvement of the parotid gland, it did not make sense to me to start treatment when the desired outcome of treatment was already taking place. I think my doctor had been operating under the assumption that my condition was still the same as when last we met and that the fever may be related to the mycobacterial infection. After reevaluating the situation, she agreed to hold off on starting treatment until I received another MRI. She also ordered a number of labs to make sure my fever was not the result of mycobacteria having spread to the blood.

The fever, which resolved the day before Christmas, turned out to be some kind of stomach flu. Over the next few weeks, I felt my parotid gland continue to decrease in size. The day of my MRI, I was also scheduled to return for a follow-up appointment at Rheumatology. I had had a slew of additional labs done to check for specific markers of Sjogren's and other autoimmune conditions. Unfortunately, the results of those tests were inconclusive. Several of the auto-antibodies in my blood were elevated, including the the two that are specific for Sjogren's, but the doctors were hesitant to make any kind of diagnosis based on these results in the absence of clinical symptoms of the disease and also given that the tests were performed in the context of an infection I was currently fighting. I was sent away with more lab slips to repeat all of the labs in a few months when hopefully my body would be in a more neutral state of health.

My second MRI experience was actually much less taxing than the first, perhaps because I knew what to expect. A few days later I got an email from my infectious disease doctor saying that my parotid gland looked much improved and that she would consult with the experts at National Jewish Labs on how to proceed. I returned to see her at the clinic a few weeks ago, and she told me that based on the results of the MRI, the improvement of my condition was quite remarkable. Just by looking at the most recent images, she would never have known that it was once as bad as it was. Since the right parotid was still slightly enlarged, she ordered another MRI for about a month from now to check to see if it will fully resolve, but everybody was in agreement that treatment would not be necessary unless my symptoms return.

Before we concluded the appointment, I brought up the question of how I came to contract such a rare infection. She had briefly asked at our last visit if I had been to the dentist recently, and I had indeed gone in for a routine cleaning a week or two before the symptoms began. I had never made a connection, but this time she told me that there was a good chance I picked up the infection from the dentist's office, most likely due to a contaminated water supply. As the infection is so rare, of the very few cases reported, all of them have had some kind of preceding event of dental work or oral manipulation of some kind. She suggested I speak with my dentist to make him aware of the situation even though there is no way to prove the infection originated from his office.

After hearing this of course I had a lot of reservations about ever returning to my dentist's office. However, on the other hand, I HATE (I am using the word HATE) finding new dentists, and it had taken me several tries to find this office which I really liked. It's a really nice, seemingly clean, office with all state-of-the-art equipment and a friendly staff, and most importantly, I never felt like they were selling me on any unnecessary procedures. But on the other other hand, I had been through a lot, and I wanted to at least see how they would respond to my news before deciding to stay or not.

A few days later I called the dentist office and spoke with the senior doctor, who I had never seen as a patient, but is the namesake of the practice. I don't know if it was his advanced years or a poor connection, but he didn't seem to grasp very well even the simple medical terms I was using to describe my condition. For example, he seemed to have no idea what a parotid gland is, and although I give you it's not a tooth, it is in the MOUTH, close to teeth, seemingly in the domain of a dentist. Overall, I felt not really taken seriously. So, if you live in San Francisco, I need a recommendation for a new dentist. :-(

Finally, the story has caught up to present day. Unfortunately I can't provide a real conclusion as there are still many unanswered questions. I will have another MRI next month to see if the inflammation has completely resolved. I will also have another round of tests to check for auto-antibodies and markers of auto-immune disease. I was told that there will always be a chance that the infection will return, especially when I'm in a state of immune stress (like pregnancy). I was also told that it's quite possible I will exhibit more symptoms of Sjogren's later in life. These are things I have tried to push to the back of my mind. While it is difficult sometimes not to worry, most of the time it is easy to forget simply because I have so many other things in the front of my mind.

Wacky Wednesdays

Ever since I went back to lab when Ruby was 3 months old, I have been taking off Wednesdays to be home with her. I had read in a book somewhere that if you are struggling with the idea of going back to work, it really helps to take off Wednesdays if you can as it breaks up the week and makes the time spent away from baby seem more manageable. I also struggled with the notion of having a caretaker other than myself spend more waking hours with my child than I did, and being at home on Wednesdays tipped the hours in my favor. In the beginning I rationalized that I would make up the time in lab by putting in extra on the weekends or switching off with Steve some weeks, but in reality, I just worked less. Is that something I apologize for or regret? Hell no. I rearrange my experiments, schedule meetings, more or less plan my week around being at home on Wednesdays, and there has not been a single week since going back to lab that I have not spent at least one day being a Stay At Home Mom with Ruby. (Does that make me a crappy graduate student? Probably, but that's a discussion for another day ...)

I have so many ideas for what Ruby and I would do if I were a full-time Stay At Home Mom (SAHM) (e.g. classes, playdates, museums) that since I only have one day, Wednesdays sometimes get a little crazy. Added to this is the issue of Ruby refusing to nap on any day that I am at home. For a long time Ruby napped like clockwork, and even now she naps perfectly well with the nanny, but on weekends and Wednesdays, she will not nap unless she happens to fall asleep in the car or in the stroller. Ruby's nap strike seems to have a far greater effect on my exhaustion level than on hers. Even though Ruby is relatively calm and easy to look after compared to other toddlers, most other toddlers nap for 2-3 hours in the afternoon. Even a relatively calm toddler can wear a person out with NO nap break during the day. Maybe it's just too much to ask to have a toddler who is both easy while awake and easy to put down for naps.

Here are some examples of our typical Wednesday:

Last Wednesday morning we met up with Ruby's little friend Eva and her mom at Alta Plaza Park, which is this beautiful park on top of Pacific Heights with sweeping city views. We played there for a bit and then walked to the Fillmore to meet my friend Liz for lunch. We decided to eat at Pizzaria Delfina, a very popular neopolitan-style pizza joint. Due to its popularity and lack of seating that would accomodate 2 toddlers, we ended up waiting close to an hour for a table.

For a while Ruby and Eva waited patiently on a stoop next to the restaurant.

But after a while Ruby wandered off down the street and stumbled into the open door of a newly opened preschool. As she helped herself to the bins of toys, the director spoke to me about their program. Ironically I had just started looking into preschools for Ruby and would have never known about this new school had Ruby not wandered inside.

By the time we finally were seated, the kids were famished, and we needed several refills of the free breadsticks. However, the service was very slow, and the meal itself lasted almost 2 hours. In an amazing feat of toddler stamina, both Ruby and Eva sat nicely the entire time and never fussed or complained!

By the time we got home, it was already past 3:00pm! Despite the long day and all the activity, Ruby still refused to nap. I played with her for a while, and around 4:30, she demanded to nurse. Even though she hardly ever nurses anymore in the middle of the day, I took it as an opportunity for me to get some rest. We were both so exhausted that we fell asleep almost instantaneously, and Steve returned home to find us both passed out on the couch.



This Wednesday it was hailing intermitently, so I took Ruby to the Exploratorium, which is a very hands-on children's science museum.

A few of the moms from our playgroup joined us, and it was fun to see everyone after several weeks of inactivity in the playgroup. Even though the group still actively communicates via email, playdates have been harder and harder to schedule due to some moms having moved out of the city and everyone (except us) getting pregnant with their second baby. We stayed at the Exploratorium until almost 1:00pm and then returned home to have lunch. After lunch, Ruby once again refused to nap, so she scampered around me as I prepared food to pack for her dinner. When she still would not nap by 3:45, I gave up and put her in the car to drive down to boyfriend Julien's house. By 3:48, she was asleep.

Even though it took just 25 minutes to get to Julien's house, I stayed in the car until 5:00pm so that Ruby could get some more sleep. When we finally went inside, Julien couldn't wait to play, but Ruby was still groggy.

After coming out of her sleey daze, Ruby and Julien played and then exchanged a belated Valentines present (Ruby got Julien a sticker book, and Julien got Ruby a framed photo of the two of them). Steve arrived from work, and we all went out for dinner together. By the time we got home and put Ruby to bed, it was 9:30, and the only thing I wanted to do was sit on the couch and bask in the satisfying exhaustion that follows a day filled with quality baby-time.

Ruby's Valentine

Happy Valentines Day, Julien! Thank you for sharing your peas!

Love,
Ruby

Mystery Diagnosis Part III

By the following day when I went into Student Health to have my PPD test read, the swelling had gotten even worse, and I didn't need the nurse's reading to know that I had had a positive reaction. I was immediately sent to Radiology for a chest x-ray to determine whether or not I had active TB. It was the day before Thanksgiving.

My chest x-ray turned out to be negative, which was consistent with the fact that I had no cough or any other symptoms associated with Tuberculosis. Despite the fact that I had had such a strong reaction to the TB skin test, I knew that it did not necessarily mean that I had Mycobacterium tuberculosis. There are a number of other "atypical" mycobacteria that may also cause a positive PPD test. Unfortunately I was told by Pathology that it would take at least 5 weeks to determine exactly what kind of mycobacteria I was infected with. From my time in the TB lab, I knew that M. tuberculosis grows very slowly in culture, so I figured they probably needed that long to grow enough of the bacteria in order to identify it. In the meantime, I was referred to both the department of Infectious Disease and the department of Rheumatology (for the possible autoimmune component).

Since it was the holidays and pushing through referral papers always presents as a bureaucratic bottleneck, there was nothing to be done for the time being. I tried to forget about it for the holiday weekend and focus on the massive amounts of food that needed to be cooked and eaten.

A couple of weeks later, I got an appointment with Infectious Disease (actually much more quickly than normal since my case was marked 'urgent'). After once again relaying my history, I was told by the Infectious Disease doctor that although the species of mycobacteria I was infected with was still not known, they could already tell by the speed at which it was growing that it was not M. tuberculosis, but rather a an atypical "rapid-grower" mycobacteria. The specimen was sent to National Jewish Labs in Colorado, the only lab in the country that specializes in testing these bacteria for antibiotic sensitivity. Without knowing which antibiotics it was susceptible to, there would be no course of treatment for my still-swollen parotid gland.

A few days after the appointment, I got a call from my Infectious Disease doctor. The species of my mycobacteria had been identified as Mycobacterium abcessus. I was told that as rare as mycobacterial infections of the parotid gland are, infection by this type of mycobacteria is EVEN MORE rare. In fact, it is so rare that hardly any cases have ever been reported. Not even the experts at National Jewish Labs, who receive referrals for parotid gland infections from everywhere in the country, have ever personally seen a case like mine. Therefore no one could give me a predicted outcome, and no one could provide any logical explanation of why this had happened to me.

My doctor did inform me of some potential risks of this type of infection, which included the formation of an abscess that would require surgery, and the spread of the infection to the blood vessels surrounding the parotid gland. The sensitivity testing on the specimen would still take several weeks to complete, but I was advised to call Infectious Disease if I ever came down with a fever or severe headache.

Over the next few weeks, the swelling in my salivary gland seemed to improve. The size of the lump had reduced and it was not nearly as painful as it once was. For a while, I was able to put it at the back of my mind. The Christmas holidays came, and our parents came into town to celebrate with us. The day after my parents arrived, we planned to do all of our holiday grocery shopping. However, I was feeling extra lethargic and could not seem to get warm. So I backed out of the shopping trip and took a nap instead. When I woke up, I realized I definitely had a fever.

TO BE CONTINUED ...

Mystery Diagnosis Part II

By the time we walked into the offices of Otolaryngology/Head and Neck Surgery at UCSF Mt. Zion on a sunny November morning, Steve and I had been reduced to sacks of nerves. After two days of dread and anticipation, I was fully expecting to hear the worst and that I would more than likely be ushered into surgery that same week. However, instead of my imagined scene of the somber, seasoned attending sitting us down to deliver the news, it was a bubbly physician's assistant who entered with the results of my MRI.

She told us that the lump in my neck was not a tumor, but a grossly enlarged salivary gland and that my symptoms were the result of extreme inflammation. Although in truth this news was an enormous relief, ultimately the MRI results only raised more unanswered questions: What could cause this kind of inflammation? WHAT DO I HAVE?

More tests were ordered. This time the blood tests were aimed at a panel of inflammatory markers. I was also sent to undergo a Fine Needle Aspiration biopsy, wherein a long needle is inserted directly into the affected gland (multiple times) and cells are aspirated for histological staining and culture. Aside from feeling like a pin cushion, my general state of mind improved. I was once again hopeful for a simple and quick resolution. We ordered the Thanksgiving turkey; life moved on.

The following week we returned to ENT to hear my test results. The blood tests showed a number of inflammatory markers were elevated, indicating a possible autoimmune condition. This did not entirely surprise me, as I had already learned from the Internets of a condition that fit my symptoms known as Sjogren's Syndrome. Sjogren's is an autoimmune disorder that affects the moisture-producing glands of the body. The most common symptoms are dry mouth and dry eyes. It is actually the second most common autoimmune disease in the U.S. following Rheumatoid Arthritis. There is no cure, and the only prescribed treatments are those used to alleviate symptoms (artificial tears, chewing gum to induce salivation, etc.) Although I would never have complained to a medical provider about dry mouth or dry eyes, I suppose they have always been on the dry side; I had just assumed it was still in the realm of normal.

Although the prospect of a possible autoimmune condition was daunting (particularly to an immunologist), I would have been somewhat satisfied by that diagnosis, given that it is a simple answer to my looming question. Unfortunately, I had only heard the beginning of my lab results. The pathology reports from my FNA biopsy had also returned, and the cultures were growing some kind of mycobacteria. If you haven't heard of mycobacteria, perhaps you'd recognize Mycobacterium tuberculosis aka the bacteria that causes TB. I was immediately sent to be tested for TB.

Most people have had a few TB tests in their lives, wherein a bolus of BCG is injected under the skin to see if a reaction occurs 48 hours later. I had had a TB test fairly recently, just before Ruby was born, as it is routine to test pregnant women for TB. The test was difinitively negative, with no reaction whatsoever. I couldn't imagine how I could have possibly come into contact with TB in the time since Ruby was born. We had barely travelled at all outside the bay area, with the exception of one trip to Santa Monica and one trip to Maui. I never even take public transportation, which is the only place I can think of where one might unknowingly contact high-risk individuals. I had rotated in TB lab, but that was more than 5 years ago during my very first rotation of graduate school, and any exposure I had during that time would surely have been picked up by the TB tests I had had since then.

I returned to student health to have my TB test administered. The nurse told me to come back in two days to have the test read but that if it was positive, I would probably be able to tell by the following day. I left fully expecting the test to be negative. The next morning, I woke up to find a swollen mass the size of plum on my forearm.

TO BE CONTINUED ...