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.
0 comments:
Post a Comment