Warning: This is a long post. Prerequisite needed: Lengthy time. Please read at your own risk.
Yes, I’m gonna share a rather long journey with you. The precise timeframe of the journey was, let me count, approximately one year. Although 12 months doesn’t sound as extensive as it is, trust me, it has been a year with most dramatic elements that’d top my life.
I was diagnosed with nodal tuberculosis.
The story began 15 months ago. It certainly was one of the most unforgettable moments in my life that Tomato and I graduated from our university. We celebrated our graduation by having a trans-Canada trip, from the very east coast of Canada, all the way to the west coast of Canada, and back to the origin, all by BUS. The budget was tight, but we were ambitious, so we selected what it appeared to be the cheapest transportation method, Greyhound bus (Greyhound Bus is a North America Passenger Bus Company, providing extensive coverage to many destinations in Canada and USA). The trip was great. We toured all the major Canadian cities, which included Montreal, Toronto, Vancouver, Ottawa, etc. Oh, let’s not forget the breathtaking Rockies Mountain, Banff National Park, saw the glazier, ice-parkway, bluish-green pond, absolutely gorgeous. We also saw the Gigantic Niagara Falls, the Great Prairie, the Native American Indians, etc etc etc. And along with all these amazing tourism spots, we had tons of cheap and scrumptious meals. It was real fun, and truly memorable.
The nightmare started to begin after we went back to Halifax. I started to feel chilly from time to time, even during summer! It was unusual. Then I started having some mild fever, but it would go away with Acetaminophen or Ibuprofen. But because I was feeling well otherwise, we just couldn’t let ourselves be bothered by it as we were busy packing to move out. Then, we moved out, we tried our best to get settled at the new place, and, the fever and chilliness persisted. Plus, it was getting worst. They happened more often, I was feeling worse, and to top it all, the temperature of the fever was climbing to a newer peak each time. The weird thing, the fever would disappear once the drugs were in effect, and I would feel/look completely normal! Of course I paid visits to my family doctor, but he sent me home as he believed the fever was due to unknown virus infection, and more rest and liquid were all that I needed. There you go, then I was home, resting, and was constantly waiting to be bombarded by the severe chills + high fever. During those days, I’d have three-four episodes of fever on average each day. They’d come, I’d take my acetaminophen/ibuprofen, after a few hours, the fever would go, and I’d look normal. There was no sore-throat, no flu, no diarrhea, no coughing, no stomachache, NOTHING! nothing else to associate with the fever & chill. During one of the night, feeling frustrated and worried, Tomato suggested a trip to the ER would be relevant. We then got hauled to the nearby hospital by a cab at the wee hours. After long hours of waiting (around 5 hours I think), I finally got checked by an Emerge Physician. They took an X-ray of me, had my blood tested for all sorts of possible infections, did lots of palpation and physical check-up, and of course they did give me acetaminophen when I was there. As expected, a few hours later in the ER, I appeared to be normal again. Having ‘Negative’ in all the tests that they’d performed, a clear chest X-ray, and the physically- looked-okay-me, they sent me home as they believed, and agreed with my family doctor that it was due to unknown virus infection. They believed all the symptoms would soon subside. At that point, I believed everyone felt helpless, as well as myself, and all that I could rely on was my own immunity! Apparently I could do nothing other than to be patience with what I was experiencing. With the great TLC (tender loving care) given by Tomato, I hung on there. Five days later, we found ourselves appeared in the ER once again as the fever climbed to a more severe peak. It was approximately 40 degree Celsius. Similar to the first visit, we waited for a few hours, and finally, I was attended by nurses and Emerge physician. Once more, they did all that they could do, and there were no surprises in all the results, we were sent home. Nonetheless, given the fact that it was my second visit to the ER and I was not at all getting better, the ER physician referred me to an ID (Infection Disease) Specialist, Dr. M. After my first medical appointment with Dr. M, she ordered more blood test for me with an intention to rule in/out all the possibilities. She suspected all sorts of infections, and tuberculosis (TB) was one of them. However, given the fact that I was not coughing at all (hence no sputum to be tested), my chest X-ray appeared to be clear, and I had taken BCG vaccination before, these signs did not cohere with the classical TB. Along with these, there were more negatives from all sorts of serology testing. Sigh, sigh, sigh … I was upset, disturbed, annoyed, discouraged all at the same time. Needless to say my folks in Malaysia were extremely worried, but no one knows what to do other than keeping our fingers crossed, and pray really hard.
While the fever and chills persisted, some other symptoms appeared. There was once I had tons of ulcers in my mouth. On the upper palate, underneath the lip, inner edge of my oral cavity, they were outrageous, and tremendously painful! Aside from the ulcers, I had noticed the swollen lymph nodes that were around my neck and shoulder. However, due to the fact that having swollen lymph nodes was a common symptom associated with infection, not much attention was drawn to this matter. Approximately three weeks later, the fever and chills really did subside. I felt like I was alive again. The joy was like seeing sunshine once again after a terrible thunderstorm. I bet you can empathize with me, can’t you?
Everyone thought the battle was over, and I had regained my health. I thought so too. The later days were fun. I did nothing but to get rest at home. Both Tomato and I would stroll to Halifax Waterfront frequently to enjoy the awesome summer fiesta, the Tallship Festival, the Buskers’ Festival, etc etc etc. I was back into the exuberant mode.
YET, that was not the happy ending that I anticipated. The swollen lymph nodes continued to grow larger, and expanded in terms of quantity. Approximately three weeks later, I was back to Dr. M’s office. This time, she sent me for a CT scan, as well as a FNA (Fine Needle Aspiration) session to be performed by her colleague, who is an otorhinolaryngologist (a.k.a. ENT specialist). The purpose of the FNA was to test for AFB (Acid Fast Bacillus) culture, or more commonly known as TB culture. The CT scan showed significant patches close to my lungs, a much undesired news. The TB smear failed to show a positive result though. Having the urge to confirm the diagnosis, Dr. M referred me to a surgeon to have an open biopsy, i.e. to have one of the largest lymph node removed.
It was a day surgery and they had determined there was no need to hospitalize me. That surgery was my very first operation of my entire life. Sure enough, I was nervous like hell. I remembered it was scheduled at 2pm, and I had to be there for all the necessary pre-op procedures. I walked to the hospital around 12 something, and arrived there prompt at 1pm. I checked in, got all the pre-op check up, change the gown, wore the clog, and waited anxiously. I know I was fortunate that Tomato was by my side throughout, giving me endless mental and emotional support. He helped me to stay calm. Finally, it was time to be in the OT (operating theatre). I could still remember vividly that I insisted to walk to the OT myself. It was like a brief tour to the OT, surely an eye-opening experience to me, but obviously I would not wanna learn it that way. I had an OT nurse to walk with me. I remembered in the OT zone there were many individual theatres. I saw the places where the OT personnel would scrub pre and post op. I saw many other nurses. Perhaps they smiled with me, but I could not see it clearly without my glasses. It was a long corridor, and I was hoping the journey would never come to an end. Of course that would not be true. I was then walked into a room, and was asked to lie down on the operating table. Without a glimpse, more staffs walked in, and I was flashed by the OT lights. With that shiny lights, my eyes could barely open. I was then approached by an anesthesiologist, saying that he was gonna insert something into my vein, and he gave me some gas to inhale, and I … was….starting … to …. lose … my …. consciousness …….
Two hours later, I started to regain my consciousness in a gradual manner. I first realized my awfully painful throat! I wondered what happened! I opened my eye, and the nurses in the recovery area checked on me. I rested there for a while, and after I could completely open my eye, I saw Tomato, my angel. You would not understand how did I feel, but I was grateful, was emotional, was so happy to see him once again. I was transported to another area whereby some beverages would be served for post-operated patients. I was given a glass of apple juice, a glass of icy cold apple juice. I can tell you, it was my best apple juice, EVER. It was comforting, like telling me the jitters of having a surgery was finally over. Until now, I’ll crave for a glass of icy cold apple juice from time to time. It has become one of my comfort food.
After two classes of apple juice, gown-changed and some check-ups, the nurses determined that I was okay enough to go home. Mentally I was awake, but physically, I was weak like tofu. I could not even stand. Using a wheelchair, the hospital’s attendant transported me to the entrance of the hospital and helped us to call for a cab. After much hoo-hah, we finally were home. Great fatigue I suffered, I fall back to sleep right away. A few hours later, I was awake. I had some mushroom soup that was cooked by Tomato, another comfort food of mine. My throat was so sore that I could barely speak! Tomato reckoned that my throat was hurt during the intubation procedure during the operation. I once again fall into sleep.
During the next day, I got a call from Dr. M. To my disbelief, she told me that the culture we obtained from the FNA session had shown positive on the night I had my operation. (Note: TB culture, unlike other bacteria, if positive, will take a longer time to grow. They’ll take normally 3-6 weeks to grow) Meaning, if the culture showed positive ONE day before, the surgery could have been omitted. What could I say? The dramatic elements had made me speechless. Oh my …
Okay, after much painful medical procedures, the diagnosis could now be confirmed that it was TB, a disease cause by a type of bacterium known as Mycobacterium tuberculosis. In my case, it was nodal tuberculosis, where my primary sites of infection were lymph nodes. As a consequence, I was not infectious, hence isolation was not necessary. Pulmonary TB, whereby lungs are infected, are a more common and classical TB seen elsewhere. The standard regimen of the chemotherapy will be taking four types of antibiotics during the first two months of treatment. During this period, all antibiotics would be tested for susceptibility/resistance. If all four antibiotics are found to be susceptible, one can drop two out of four, and have to take the other two types of antibiotic for another four to ten months, depending on the types of TB one is diagnosed. As for me, it was lucky that I could drop the other two after two months. It certainly was no fun to take more than ten tablets a day. Every time when it was time to take the medication, I would whine a little, rant a little, absolutely abhorred it. I later on had apple juice to go with them. This way, I’d feel better.
The antibiotics, though life-saving, they could give some nasty side-effects. The drugs would impose me at a great risk of having hepatitis (as the drugs are hepatoxic, meaning bring harm to your liver). Therefore, I’d have to get my blood test for my liver profile once in a fortnight. On top of this, I had experienced many dreadful side-effects. Nauseous, fatigue, myalgia (muscle-ache), loss of appetite, hair loss, fatigue, myalgia, fatigue, myalgia, fatigue, fatigue, fatigue … They all took their turn to happen. Oh, let’s not forget, the orange urine. Although I was warned beforehand, the dark orange color freaked me out so much the very first time I saw it myself, and I would have that during the entire treatment! Ewwwww!
The side effects were intense during the first two months. Luckily, my body developed a better tolerance to them later on, and by reducing four types of antibiotics to two, life was so much better as the tablet count reduced from 10 to 4. Oh, I was grateful, and I did not whine as much later on.
Aside from the disease, everything else in my life and Tomato’s life fell into parts during the first few months of the treatment. Many unfortunate events happened, one after another. Life was depressing most of the time, but we had to move on. It was during that time, I had a chance to ponder over my life, my goals, and my desires seriously. Before the disease, my plan was to try my best to stay in Canada and enter graduate schools. I was inspired and determined to further my studies, hopefully until the doctorate level. However, after a series of serious thoughts, I realized I did not fit into the mold that I once made for myself. That would not be a life I would prefer. Of course pursuing higher education would always crown one with a more glorious look, but if one were to do graduate studies in science, that would mean no life, no free time, sleep deprived, always competing with self and others, perpetually pressurizing, etc. I admire people who are doing this, and I appreciate their effort, but that is just not something that suits me. Especially after the disease, it came into view that what I want for myself are easier lives. That would imply: not being ambitious, not setting sky-high goals, and most importantly, not getting separated from Tomato. If I insisted to stay in Canada, we would have to turn our relationship into a long distance one. I am sorry, but I am just not that kind of gal that enjoys long distance. After a series of contemplation, I made the wisest choice of my life. I quit the Canada plan, went back to Malaysia for a few months, and am now residing in United States, being with Tomato all along.
Life has never been so good, so far.
On August 23, 2005, I had reached another great milestone of my life. It definitely is a noteworthy one, if not one of the most significant date to celebrate. It was my last day of taking the antibiotics! I can’t believe it has been one year already, and with great compliance, I finished my 1-year course antituberculosis drugs! From that day onwards, there would be no more antituberculosis drugs for me, no more worries about hepatitis, and best of all, no more orange color urine. Yay!
My heart still trembles when I think about this. From now on, I can proudly announce myself as a ‘TB Survivor’. If you haven’t been through something similar, you certainly will not fully apprehend the feeling when I say ‘I survived TB!’. Oh yes, it’s over, it’s officially over.
Ahhh, IT IS OVER!
I’m so happy to make this episode into a past. I can assure you, it was no fun to face death. I have so much more to do, to see, to travel, to experience, to attend to, to … that I have yet to do. It was simply awful.
But now, it’s over.
Anyhow, there are still aftermaths from the disease that I will have to bear with till the rest of my life. My swollen lymph nodes, although most of them had subsided, they are still a number of calcified (hardened) nodes around my neck. Yes, they will be like this forever. No, they are not life-threatening. As well, darker patches around my lungs are visible in chest X-ray, and will remain like this till forever. As much as I’ll like to forget them, they will be with me, and will be in me, everlastingly.
Looking back, I still can’t believe how I went through all that. I remember a lot of needle-poking sessions, ouch! They were painful, be it the uncountable blood tests, the CT scans, and let’s not forget the dreadful surgery. Oh well, at least I am well now, and the ID specialist assures me that it is next to impossible to have recurrence of TB. Why not a certain impossible one might ask? My ID specialist humbly articulated, ‘You can not be too certain when it comes to Medicine.’ Hmm.
All in all, I’m well now, and will take the best effort to stay well.
This is a brief memoir of mine. Just wanna pour them out once and for all. And of course, to share with you.
Your proud nodal tuberculosis alumnus,
I’ll like to take this opportunity to express my gratitude to Canada. To me, Canada possesses some of the best welfare system in the world. I bet I will shock you if I tell you I spent nothing on all the treatments I was given when I was in Halifax, Canada. Yes, absolutely NOTHING. How was this accomplished? Well, first of all, I was covered by a great insurance coverage provided by the Provincial Government in the province that I resided. In that province, if one is a citizen, or a resident who had reside there for at least one year, one will bear the eligibility to be granted the coverage. I was a student in Halifax for approximately 3 years. I had to pay for my own insurance coverage for the first year, but I got covered by the provincial insurance on the subsequent years. Consequently, I did not pay a single penny on my clinic visits, ER visits, uncountable blood tests, CT scans, as well as the surgery. I did not know how much would everything sum up to, but I bet it definitely would be a huge amount. And me? I paid nothing.
Aside from this, I paid nothing for all my antibiotics too. No, the provincial insurance did not cover prescription price. I was so afraid that I would be broke by the end of the treatment as let me tell you, the antibiotics are expensive. Very expensive indeed. However, as an effort to eradicate TB cases from Canada, Public Health Canada has a policy stated that patients in Canada, once diagnosed with TB, will get the antibiotics sponsored by the government. Aren’t you speechless like me?
Although I got this disease in Canada, I blame no one for the disease. As a microbiology student myself, I am well aware of the risk and chances of infected. It was unfortunate to happen, but it was fortunate enough that I was treated in Canada. I am more than ‘adequately treated’ as far as everyone is concerned. FYI, the specialists I met in Halifax were all Associate Professors, meaning I really was in good hands. What more could I ask for?
To sum it all, I owe Canada a big favor.
Hence, next time if I tell you I Heart Canada, please do not ask me why.