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 ...
Friday, February 11, 2011
Friday, February 4, 2011
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 ...
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 ...
Saturday, January 29, 2011
Thursday, January 20, 2011
Mystery Diagnosis
Around the end of October of last year, I noticed what I thought was a swollen lymph node on the right side of my neck. I was a bit distressed because I thought it meant a cold was coming on, and that was the week I was to host our playgroup's Halloween party. However, days passed and no cold symptoms appeared. The swollen lump on my neck was getting more sore and tender to the touch to the point where I was popping ibuprofen several times a day.
When after a week the swelling had not resolved, I reluctantly decided to walk into the student health clinic. The irony of UCSF student health is that at a hospital world renowned for hiring and training the foremost physicians in every field, the physicians that are hired to treat the students at Student Health seem like they were scraped from the bottom of the medical school barrel.
After the doctor assessed my neck lump, she ordered some standard labs to look for signs of infection (CBC, mumps and mono antibody) and also suggested I suck on sour candies to induce salivation in case I had a blocked salivary gland. When I followed up with her later that week, my labs had come back normal, but the swelling had not improved. The poor student health doctor seemed at a loss. She actually told me she was going to step out into the hall so that she could pace up and down and think about what to do. After returning, she decided to empirically prescibe some antibiotics in case I had some kind of subclinical infection.
Another few days go by, and the antibiotics do nothing to help the swelling. In fact, if anything the lump had gotten worse, having grown from the size of a grape to the size of a walnut and occassionaly waking me in the middle of the night due to discomfort. Still baffled, my doctor referred me to Radiology to get an ultrasound on my neck. When I met with her two days later, she told me that the ultrasound had showed a "heterogenous mass" that was inconsistent with an inflamed lymph node or a blocked salivary gland. Then the report dropped the N-bomb: Neoplasm.
The recommendation was further imaging by MRI with contrast. I was ushered into the MRI early that same afternoon. The closest personal experiences I have had with MRI is when Ruby had one to image what was discovered to be a small teratoma on her tailbone when she was 2 weeks old and also what I have seen on House. Unfortunately, the experience was at least as, if not more unpleasant than what I imagined. The tube of the machine, although narrow-looking on TV, seemed much narrower in person. Also, perhaps because I was getting a MRI of my head and neck, my head was wedged in on both sides and something that looked like a cage ala Hannibal Lecter was placed over my face. The most unexpected part of the procedure was the sound, which made the experience akin to being buried alive with a jackhammer trying to dig me out. I was told that it was imperative to remain absolutely still during each image. Any slight movement such as swallowing, blinking, breathing too hard would render the image unusable and it would have to be repeated. Each image took anywhere from 2 to 6 minutes to take. All tolled, I spent approximately 50-55 minutes in the machine. By the end, I was ready and willing to give up military secrets.
Since the MRI was done on a Friday afternoon, an appointment was made with an ENT (ear, nose and throat) specialist for Monday morning to go over the results. This gave us the whole weekend to stew, which was more than enough time for me to convince myself that I had some kind of weird cancer. Although on the surface that weekend was just like any other weekend (we went to the zoo, hung out with friends), inside my head I was not able to stop myself from touching on the deepest, darkest thoughts. What if I am no longer able to take care of Ruby? What if I'm not around to see her grow up?
For one weekend, all of our plans for the future halted. We could not return emails to our architect regarding our planned home remodel; I cancelled the experiments I had planned for the following weeks; we held off on ordering the Thanksgiving turkey. For one weekend I could not eat or sleep or look at Ruby without crying. The doctor's words turned over and over again in my head, "I want to move quickly on this. You're young, and you have a young child ..."
To spare those of you who didn't already know the worry and suspense, I did not have a tumor, and I am not going to die. However, the journey to the diagnosis had just begun and turned out to be much stranger than I could have imagined.
TO BE CONTINUED ...
When after a week the swelling had not resolved, I reluctantly decided to walk into the student health clinic. The irony of UCSF student health is that at a hospital world renowned for hiring and training the foremost physicians in every field, the physicians that are hired to treat the students at Student Health seem like they were scraped from the bottom of the medical school barrel.
After the doctor assessed my neck lump, she ordered some standard labs to look for signs of infection (CBC, mumps and mono antibody) and also suggested I suck on sour candies to induce salivation in case I had a blocked salivary gland. When I followed up with her later that week, my labs had come back normal, but the swelling had not improved. The poor student health doctor seemed at a loss. She actually told me she was going to step out into the hall so that she could pace up and down and think about what to do. After returning, she decided to empirically prescibe some antibiotics in case I had some kind of subclinical infection.
Another few days go by, and the antibiotics do nothing to help the swelling. In fact, if anything the lump had gotten worse, having grown from the size of a grape to the size of a walnut and occassionaly waking me in the middle of the night due to discomfort. Still baffled, my doctor referred me to Radiology to get an ultrasound on my neck. When I met with her two days later, she told me that the ultrasound had showed a "heterogenous mass" that was inconsistent with an inflamed lymph node or a blocked salivary gland. Then the report dropped the N-bomb: Neoplasm.
The recommendation was further imaging by MRI with contrast. I was ushered into the MRI early that same afternoon. The closest personal experiences I have had with MRI is when Ruby had one to image what was discovered to be a small teratoma on her tailbone when she was 2 weeks old and also what I have seen on House. Unfortunately, the experience was at least as, if not more unpleasant than what I imagined. The tube of the machine, although narrow-looking on TV, seemed much narrower in person. Also, perhaps because I was getting a MRI of my head and neck, my head was wedged in on both sides and something that looked like a cage ala Hannibal Lecter was placed over my face. The most unexpected part of the procedure was the sound, which made the experience akin to being buried alive with a jackhammer trying to dig me out. I was told that it was imperative to remain absolutely still during each image. Any slight movement such as swallowing, blinking, breathing too hard would render the image unusable and it would have to be repeated. Each image took anywhere from 2 to 6 minutes to take. All tolled, I spent approximately 50-55 minutes in the machine. By the end, I was ready and willing to give up military secrets.
Since the MRI was done on a Friday afternoon, an appointment was made with an ENT (ear, nose and throat) specialist for Monday morning to go over the results. This gave us the whole weekend to stew, which was more than enough time for me to convince myself that I had some kind of weird cancer. Although on the surface that weekend was just like any other weekend (we went to the zoo, hung out with friends), inside my head I was not able to stop myself from touching on the deepest, darkest thoughts. What if I am no longer able to take care of Ruby? What if I'm not around to see her grow up?
For one weekend, all of our plans for the future halted. We could not return emails to our architect regarding our planned home remodel; I cancelled the experiments I had planned for the following weeks; we held off on ordering the Thanksgiving turkey. For one weekend I could not eat or sleep or look at Ruby without crying. The doctor's words turned over and over again in my head, "I want to move quickly on this. You're young, and you have a young child ..."
To spare those of you who didn't already know the worry and suspense, I did not have a tumor, and I am not going to die. However, the journey to the diagnosis had just begun and turned out to be much stranger than I could have imagined.
TO BE CONTINUED ...
Wednesday, January 5, 2011
Hand in hand
This morning Ruby and I went to the zoo to meet one of Ruby's newest little friends, Eva. Eva's mom and I met through one of Golden Gate Mothers Group's Specialty Subgroups for moms in their 20s. In a place like San Francisco being a mom in your 20s places you in quite a small club (there is also a subgroup for moms in their 40s, the size of which dwarfs the moms in 20s group). I connected with Eva's mom because we are the exact same age, and we both have daughters who are also the exact same age! Eva is one of the sweetest and brightest toddlers I have ever met. She speaks French and is very communicative. She loves to give kisses, and today she insisted on holding Ruby's hand at all times.
I can already tell that Ruby and Eva will become good friends.
I can already tell that Ruby and Eva will become good friends.
Tuesday, January 4, 2011
Best buddies
With the start of the new year comes the one year anniversary of our nanny share. When Ruby and her share care buddy Ian first met, Ruby was 3 months old, and Ian was in utero. Ian's parents met with us and the nanny to discuss the possibility of a nanny share. However, it was not until a year ago, when Ian was 3 months old and Ruby was 7 months old that the nanny share officially began.
From the beginning, it was clear that Ruby and Ian were opposites. Ruby was quiet and mellow and completely immobile. Ian was loud and excitable and could not sit still. Ruby would be happy to sit and listen to books and play with blocks all day. Ian is happiest when he's able to run around freely, explore every nook and cranny, and bang things together that make loud noises. Despite being almost 4 months younger, Ian crawled and walked months before Ruby gave any sign of even trying. When we first child-proofed our house, it was entirely for Ian's benefit.
Despite being complete opposites, Ruby and Ian have always had a great deal of affection for one another. When out on a stroll in their double stroller, Ian would often take Ruby's hand, and when the nanny tries to stop him for fear that he might put her hand in his mouth, Ruby would get upset! Ruby and Ian have a special greeting when they first see each other in the morning of crawling up to one another and bumping heads.
Although many of Ruby's little friends are openly affectionate with everyone they meet, offering hugs and kisses to all, Ruby has always been much more shy and reserved. The first person I have ever seen Ruby hug, aside from me, Steve, the nanny, and her dolly, is her little buddy Ian.
Saturday, January 1, 2011
Happy holidays!
Hi everybody! I hope you all had a very merry Christmas! This year, ALL of my grandparents came to see me, so I had 2 Na-na's, 2 Ye-ye's, a Mommy and a Daddy to do my bidding. Boy oh boy did I live it up!
The night before Christmas, I was so excited for Santa Claus to come that I woke up at 3am and couldn't go back to sleep! That's why Mommy, Daddy, and I look sort of tired in these pictures.
I must have been a good girl this year, because I got SO MANY presents!
I was very happy to get many new books because I've never met a book I didn't like.
I also received my first potty, but I'm not sure yet what that's good for.
I very much loved my first piano, but I don't understand why it sounds better when Ye-ye presses the keys than when I do it.
After I opened all the presents under the tree, I got even more presents out of an extra large sock!
Santa Claus must have read my wish list because inside my stocking was a brand new hairbrush!
I spent the rest of the day brushing everybody's hair.
Some people had more hair to brush than others.
Even though I loved all of my presents, the best part of the holidays was spending time with my family!
The night before Christmas, I was so excited for Santa Claus to come that I woke up at 3am and couldn't go back to sleep! That's why Mommy, Daddy, and I look sort of tired in these pictures.
I must have been a good girl this year, because I got SO MANY presents!
I was very happy to get many new books because I've never met a book I didn't like.
I also received my first potty, but I'm not sure yet what that's good for.
I very much loved my first piano, but I don't understand why it sounds better when Ye-ye presses the keys than when I do it.
After I opened all the presents under the tree, I got even more presents out of an extra large sock!
Santa Claus must have read my wish list because inside my stocking was a brand new hairbrush!
I spent the rest of the day brushing everybody's hair.
Some people had more hair to brush than others.
Even though I loved all of my presents, the best part of the holidays was spending time with my family!
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