What would you do if your doctor told you had active tuberculosis?
I’m sharing my experience with having active tuberculosis. Nothing I say should be construed as medical advice. Please speak with your doctor if you suspect that you have an infection. All of what I’m sharing is true to my own experience with TB so please do not take any of it as medical advice.
This is part 1, it turned out to be so long so I broke it into two parts. Don’t worry, I’m publishing them on the same day. If you’re done here, you can skip over to Part 2.
Yesterday was the day, I can’t believe that it is now exactly three years since I was released from the hospital. When I sit down to think about it, it all seems so crazy to me. It all seems so surreal and I feel the need to share with you my experience at this time.
In April 2016, on a Wednesday, I ended up in the hospital. I was coughing for months. A couple of doctors assumed it was acid reflux that was causing my cough. I was even taking medication for the acid reflux and at one point, I was even given muscle relaxers to even try to help calm the cough. But, it wasn’t working.
I can’t even tell you how many times I googled “severe cough” and other related search terms. I was pretty miserable. Not only was I coughing, but the coughing was also causing severe pain in my chest. I couldn’t have a conversation with anyone without coughing every other second.
So, long story short, I didn’t have acid reflux.
I had active tuberculosis.
When I meet a new doctor or nurse and tell them I previously had tuberculosis. They assume that I’m talking about the dormant form or I was exposed to tuberculosis. Actually, a lot of people around the world and in the U.S. have been exposed to it. So it’s not uncommon.
If you have been exposed to tuberculosis, it doesn’t mean you’re contagious. You’re likely not sick. You just have the bacteria in your body. You might never get sick because your body is able to fight off the infection and it’s actually dormant and not active. That was me for a while and for who knows how long and then it turned into full blown: active tuberculosis. That’s what I had and I was contagious.
The question I get all the time when I tell someone I had tuberculosis
“Oh, well didn’t you get vaccinated for that?” Actually, in the U.S. we don’t usually get a vaccine for tuberculosis. There is one that’s given to babies in other countries but It doesn’t prevent you from getting TB.
TB is actually a bacteria. And tuberculosis is treated with several different antibiotics. The scary thing is there are some antibiotic resistant strains of TB.
If you're about my age, do you guys remember this when you were a kid? In the late 80’s and early 90’s, I remember getting the little stick skin test for tuberculosis exposure.
They would give us the TB skin test, then take a pen and draw a circle around it, and then after 48 hours or however long, they would check it. If there was a red mark or a rash then they would send you to the doctor and get a chest x-ray. Those skin tests, when I was a little girl, always came back negative.
So, going back to ending up in the hospital and all of the coughing.
Actually, let’s rewind a little further, a few weeks. We were shopping at a big box store and I was coughing up a storm. I could feel the glares from other customers every time I coughed.
Side Note: Let me just say, I feel terrible about possibly exposing people to TB. The doctors kept telling me to not worry about it, that I needed to focus on getting better. They reassured me by telling me that I didn’t do it on purpose and they were glad they caught my TB sooner rather than later.
Remember all of the coughing was so painful. I was doubled over in pain. I was even crying at one point while were in the store and Curtis looked at me with worry. I was so self-conscious about this cough, I actually thought he was looking at me and thinking, “Oh gosh, she’s being so dramatic.”
But after a few minutes, he begged me, several times, to go to the urgent care clinic.
The urgent care clinic sends me home with a Z-Pak
I agree to go and I remember telling the nurse and the doctor (or it might have been a nurse practitioner) that I was in so much pain from all of the coughing. I had never experienced this type of pain before.
They told me that they could hear the wheezing in my lungs. I actually have mild asthma, so it wasn’t a surprise that there was something going on in my lungs, we just didn’t know what.
I was coughing off and on for months; I thought I just had really bad allergies. I was thinking that the cough was a result of the allergies because I would get a subtle cough when my allergies got pretty bad. My preventative asthma medication usually helped with this but for months it hadn't been working.
They did order a chest x-ray at the clinic. They returned to the room and told me that they didn’t see any pneumonia in my lungs via the x-ray.
They gave me a breathing treatment and then gave me a Z-Pak (antibiotics) and then sent me on my way.
I wanted to say that I felt better. But to be honest, I was still coughing every other second. The Z-Pak did nothing. The breathing treatment probably helped a teeny bit.
A trip to the allergy doctor
I was at my allergy doctor’s office a few weeks after my visit to urgent care. We had scheduled a date to start these injections called Xolair. It was supposed to help me with my allergies and hopefully with the cough but would require me to sit in the office for three hours after the injection (if I remember correctly) and also require me to carry an EpiPen indefinitely.
A couple weeks before this, I had seen my GI doctor. I don’t remember if he was totally convinced the cough was caused by acid reflux but he recommended an upper endoscopy with a 48-hour Bravo esophageal pH test.
He described it as something being clipped to my esophagus and I would have a beeper-like gadget attached to my belt. It would send pH values to the monitor every so often.
He said this procedure had to be done at the hospital. His scheduler worked with me on a date for the procedure. The week the procedure was scheduled, someone from the hospital called me about the financial arrangements.
They said the procedure would cost me around $4000 (my memory is foggy and I don’t remember the exact amount) and that they would only ask for me $2000 beforehand. I wrote down the amount and at that time, was thinking where am I going to get $2000 right now?
They called back a day later and said I could pay half that amount if needed (which would be a quarter of what we would owe in total). I talked it over with Curtis and because we weren’t sold on ‘your terrible cough is being caused by acid reflux’, I decided to cancel the procedure.
Back to the allergy doctor. He heard me coughing and I think he felt like it sounded worse. He decided he didn’t want to do the Xolair injections that day. He wanted to hold off on the injections.
I mentioned to him that the urgent care clinic I went to a few weeks before had ordered a chest x-ray. I remember him asking one of his nurses to call and get the radiology report for the x-ray.
The last thing I remember about that appointment was while I was leaving, the nurse came over to me and she said, “Hey, we got a copy of the chest x-ray.”
“…And it says here that you have pneumonia.” And I thought, “What? I’m so confused.”
It was one of those times where you hear something and you don’t believe it. Or you don’t want to hear it. It didn’t make sense to me. Why did the doctor at the urgent care clinic tell me I didn’t have pneumonia?
And here was a report that said clear as day that I have pneumonia. I just looked at the nurse and said, “But she told me I didn’t have it. I’m so confused.” Then she responded saying, “I don’t know, it says here you do.”
I was already on my way out so I just left the office. I had paid my copay and I was done. So I just kind of left it at that.
I don’t know why. It’s one of those things where you look back and you go, “Why did I react that way? Why did I say that?” It doesn’t make any sense, because everyday Julie would say, “Okay, what’s going on here? Let’s fix this. Why does it say this?” But, I just kind of ignored it.
My sleep specialist/pulmonologist orders a CT scan
I have sleep apnea and I see a sleep specialist. He also has a specialty in pulmonology. I later learn that there are a lot of combination pulmonologist/sleep specialist doctors out there.
I see him occasionally for follow-ups and every year he orders a pulmonary function test. I actually asked my doctor if we could skip it in 2015 because our new insurance had kicked in and we had a higher deductible than we had ever had.
I had an appointment scheduled with my sleep specialist for months, it just happened to be a week after seeing my allergist. When I went in to see him, he heard the cough and I think he said something like, “Oh, that doesn’t really sound good.”
I told him about my other doctors’ theories that it was acid reflux causing the terrible coughing fits. He said, “Well, it’s not outside of the realm of possibility. Acid reflux can cause really bad coughing.”
I did mention to him that I did have a chest x-ray taken a few weeks before. Since, he’s in the same group as my allergy doctor, he just pulled up the report on the computer. He said, “Oh, it says here you have pneumonia,” and I said, You know, they told me that last week at the allergy doctor’s office and I really didn’t understand.”
He had his laptop open on a desk in the exam room. I was sitting right next to him and I could look at the screen and there it was written in really big letters, Dr _____ (I’m leaving my primary care doctor’s name out of this) to call patient, or something to that effect.
The urgent care clinic is in the same practice as my primary care provider. That’s why I like going there. Because both offices have access to the same medical chart.
My pulmonologist asked me, “Did your primary care doctor call you?” and I said, “No,” and he asked me again, and I said, “No, she didn’t.”
I nervously asked, “How could this have happened? What happened? Why did they tell me I didn’t have pneumonia?” Then, he said to me, and I remember these words exactly, “Well, someone not so smart read the x-ray and didn’t think anything of it, and then a couple of days later, an actual radiologist read the x-ray, and that’s what happened. But, they didn’t call you.”
At this point, I had been doing some research on my own, consulting Doctor Google, I know every doctor says they don’t want you to do any reading online before you come in for a doctor visit.
My biggest fear was that I had lung cancer. I was telling friends, “I’m coughing so much that I can feel my lungs and it’s so painful, and I feel like I shouldn’t be able to feel my lungs.”
It especially hurt on my right side, and the muscle relaxers and other medications they were giving me…none of it was helping. So, I was actually going to ask my doctor to order a CT scan. But then he asked me, “Have you ever had a CT scan before?” and I said, “No,” and he goes on to say, “I’m going to send you for one, if you can get it done today that would be great.”
I didn’t end up doing the CT scan on the same day because I had to wait to get the insurance authorization. I saw him on a Wednesday and the authorization came later in the week and I had to wait until Monday afternoon for the CT scan appointment.
The imaging place I usually go to also has a lab. I love going there because they are in the same group as my pulmonologist and my allergy doctor. They usually get results back for some tests the same day. And they are really, really nice there.
A few hours after I got home from the CT scan, I got a call from the pulmonologist’s office. They said they had the results back and the doctor wants to see you tomorrow morning. First thing. Can you make it?
My doctor said it looked like I had aspiration pneumonia
So, I went in to see the doctor, I was bracing for impact. I was so scared of what he was going to say. He told me that the CT scan is showing a lot more than the x-ray does. It was showing a lot of pneumonia (which just means infection of the lungs), all over my lungs.
The infection was showing up especially in my lower left lobe. He commented that it was really odd because it had this little area where it looked like my lungs were trying to wall off the infection. He had said there was a perfect line of demarcation between the infection and my where it was healthy or showed no infection.
He said this made it seem like it was aspiration pneumonia; where you inhale something that you ate and it gets stuck and causes an infection. But, he said that I was too young to have aspiration pneumonia and it just looked really odd and concerning to him. One of the things he said he wanted to do was order some blood work.
One of the things he mentioned the week before when he mentioned the CT scan was, and maybe we’ll do a bronchoscopy too. But, that was kind of invasive and that would be a big move, and he didn’t think we were going to have to do that after this CT scan.
That day when he told me the CT scan results, at one point, I asked him about a bronchoscopy. I asked, “Do you think we’re going to have to do this?” and he said, “Oh, no, I think that’s going to be too much.”
He sent me off to get the blood work done, he mentioned that he wanted me to get it done that day.
The next morning, the doctor’s office called me. One of his nurses said, “the doctor would like to speak to you, can you hold?” I actually don’t remember the last time I talked to a doctor on the phone.
My doctor orders the bronchoscopy
He said that some blood work came back positive for an infection and that he was concerned and that he was going to order the bronchoscopy. It has to be done at the hospital but we’ll get it scheduled. I got the feeling from him that he wanted to do it that week.
But we had to wait again for an insurance authorization and I had a work trip planned. I had been planning it for months. He reassured me that it was fine to go on the trip.
He kept asking me how I was doing. How are you feeling? Do you feel ok? I told him I felt fine except for the dumb cough. He asked again how was I feeling and if I had a fever. I didn’t have a fever.
That’s what’s so strange about all of this. I didn’t have a fever and I wasn’t wasting away or losing weight, which is the typical symptoms of someone with TB.
So, I went on the trip and it was really hard. Between coughing and wanting to do all the things, it was tough. I couldn’t walk that far without getting winded. I decided to climb all 219 stairs up a lighthouse though. Thinking back on it now, I can’t believe I did that while being sick.
Curtis was actually really worried the entire time. At each stair landing, he would look at me and say, “Do you want to go back down?” and but I kept insisting, “No, I’m going to do this.” Because I wanted to go all the way up.
I had the bronchoscopy procedure at the hospital
The following week, Tuesday morning, I arrive at the hospital bright and early at 6 A.M. for the bronchoscopy procedure. (It was so funny because it took me a while to even be able to pronounce that word.)
Basically, the bronchoscopy is a scope of your lungs. They stick a camera that has a light on it through your nose or mouth and it goes all the way down into your lungs. For my procedure, they went through my nose.
The anesthesiologist met me in the prep area where I had changed into a hospital gown. He told me that they usually do it one of two ways. One way where I’m not completely anesthetized and they would spray lidocaine down my throat, etc. as they were bringing the camera down into my lungs. The other way, I would be completely under.
Unfortunately, the first way he said would make me cough for hours but then it would go away. He told me that they were going to do the procedure the first way. I couldn’t imagine my cough being any worse. Later, I was wheeled into the operating room where I heard the anesthesiologist speaking to my pulmonologist. Then, suddenly, they put a mask over my face and then I was completely out.
After the procedure the doctor told my husband, Curtis, that they had found a blocked bronchial channel and that they used saline spray and just kept spraying it, trying to loosen it up. They were able to remove it along with a biopsy sample. That was something we had discussed to rule out cancer.
He told Curtis that I should feel better and I should be able to breathe a little better because they had removed that blockage.
I remember waking up in the recovery room and being told I had to wait a little bit. The next step was another chest x-ray to make sure my lungs were not punctured and to make double sure that neither of them had collapsed.
I saw the anesthesiologist again and he apologized, he told me that after he got into the operating room, he found out that we were doing it the second way. I was just grateful that we didn’t add a lot more coughing to what I was already going through.
I did think that my coughing was a little bit better, maybe a little less frequent, but I was still coughing. The next morning, though, I woke up and I felt like I gotten hit by a bus, I really did. It was the worst feeling. I really didn’t want to get out of bed. I was so tired and I just didn’t feel well.
I was in so much pain. I felt like my whole body was throbbing. My muscles were aching. I felt like my muscles and joints were on fire.
The only reason that I got out of bed was our dog at the time, Charley (he has since passed on December 2018), was 12 years old and he had a physical therapy appointment. I knew I needed to take him for his appointment.
I remember telling the vet tech, I feel really sore. I thought maybe they had hurt me when they moved me from the stretcher to the operating room bed. I asked her if I could possibly be sore from that. She has a relative who works in a hospital and immediately responded by saying, “I don’t think so.”
Thinking back to my theory, I know it makes no sense but I couldn’t figure out why I was in so much pain. And when you’re sick, you don’t really make sense. Have you experienced that before?
After Charley’s therapy appointment, I think I went home and just laid on the couch. I couldn’t shake the fever and it became even more elevated as the day wore on. When I got up, I was hunched over from the pain and I shuffled instead of walked.
Curtis came home from work and I remember telling him over and over, something isn’t right. I don’t feel well. I’m just very indecisive. I don’t know what to do, I don’t know what the next step should be.
He just says to me, and this is why I love him because he just says it, “What do you want to do? Do you want to just complain about this or do you want to go to the emergency room?” and I thought about it for a little while and said, “I think we should go to the emergency room.”
I ended up in the emergency room
I convinced Curtis that we should go back to the same hospital where I had the bronchoscopy procedure the day before. My logic was that they would have my health records from the day before. We waited a bit and then saw the triage nurse.
She took me into her little office that was connected to the waiting room area and asked me why I was there. I answered, “Well, I don’t feel really good, and I have this fever,” and she asked, “You know you can take Tylenol?” and I said, “Well, I was here yesterday and they told me I have pneumonia. I actually had a bronchoscopy yesterday. I had the procedure yesterday and I just don’t feel really good. I’m in a lot of pain.”
When she told me that I could take baby Tylenol to get rid of a fever, I looked at her and I said, “Are you sending me home?” I guess like I mentioned before, when you’re feeling crappy, you don’t really make sense. And it wasn’t like I could completely explain everything. I was just telling her, “I’m in a lot of pain, I don’t understand, I don’t feel good, and this is why I’m here.” I did mention pneumonia a couple of times too.
She told me to go back to the waiting room and wait for my name to be called. I noticed that she put my chart on top of the pile of charts outside her small office.
I remember sitting in my chair in the waiting room not being able to sit still. I was in a lot of pain at this point.
Also, I kept having to go to the bathroom. Overall, I just felt crummy. We finally get into an exam room and a nurse comes by to draw some blood. I thought they were just going to draw some blood so I told them to use the inside of my arm, on the other side of my elbow.
Later on, I looked down and saw they added an IV to my arm. I wish I had let her put it on my hand like she suggested. I didn’t realize she was adding an IV, I thought she was just taking blood for tests. Normally, when I’m having blood drawn, I just make sure they are wearing gloves and I turn away because I don’t want to look at the needle going into my skin.
When I finally saw the doctor, we talked for a bit. I think he ordered another chest x-ray and compared it to the one I had the day before. He let me decide on the next step. He said, “If it’s okay with you, I want to admit you into the hospital so we can figure this out.”
He had no answers and he didn’t know why I was feeling so cruddy.
I’m admitted to the hospital
I think I was transferred to a hospital room around 1 A.M. I just remember my nurse being so nice, telling me if I needed anything that I just need to let her know, and I remember asking, “Is there any way I could plug my phone in?” and she was very nice, there was a little plug in the bed.
Thinking back now, I get emotional thinking about it. It’s such a little thing, it’s kind of stupid, you’re in the hospital, and you’re wanting to charge your phone, but my husband had to leave that night because he had to go home and take care of the pets and figure out what he was going to do about work, etc.
A charged cell phone when you’re alone in a hospital room is your lifeline to the world. It keeps you connected to your loved ones. She had no idea how much it meant to me…her being so nice and accommodating.
Whenever the nurse came to ask me how I was doing, I would tell her about the back pain I was having. She would each time ask me if I wanted her to ask the doctor for pain meds. I kept saying no.
Whyyyy? Because I didn’t want to rock the boat. This was my first experience being in an emergency room and my first time as a patient in a hospital. Finally, after a few times, I said, yes, please ask the doctor for pain meds. I couldn’t bear the pain any longer.
What I learned from this: next time rock that boat. Demand answers and if you can’t, you need someone in your corner, a close family friend or a family member demanding the answers for you. And ask for what you need, or you’re never going to get it.
Once she dispensed the pain meds, it really helped. I should have known something was way wrong because the nurses had to help me out of bed to just go to the bathroom. At this point, I could barely walk, I was in so much pain.
I remember telling the attending doctor that I thought the pain was coming from my kidneys. He asked me to show him where it hurt. I pointed and he said those aren’t your kidneys. LOL I remember that conversation so vividly. We still never figured out the source of my pain.
My first full day in the hospital, Curtis stayed in the room with me. He would spend full days with me and go home, shower, eat, and take care of our dogs and cat. He couldn’t spend the night at the hospital because the pets needed to be cared for.
The entire time during my hospital stay, my IV machine would beep every time I moved my arm. I was told it did this because of where they put my IV (my idea on the spot!) when I bent my arm, it moved the needle or created a kink in the IV line.
So the IV machine would beep until someone came in and turned it off. That first night, my roommate kept coming over and pushing buttons on my IV machine. She told me she knew how to turn off the beeping noises. One time, when she was over on my side of the room messing with the machine, my nurse came in and glared at her.
On that first full day in the hospital, I noticed that my roommate, the other patient in the hospital room had left the room wearing a mask. Then I realized all of the nurses that had entered the room were donning masks on their face, and then my roommate left.
I heard the words: ‘you have tuberculosis’
Then, they came back and talked to me.
I don’t remember the exact words, but all I remember hearing was, “You have tuberculosis and we need to move you to an isolation room. We’re going to need you to collect your belongings and you’re going to have to wear a mask while we transport you to the room. It’s on another floor on the other side of the hospital. We’re going to get that room ready and move you there and get you situated.”
At that time, there was a respiratory therapist in the room. Throughout my hospital stay, they gave me breathing treatments a couple of times a day. I remember them telling me, “Oh the room that you’re getting is so great, it has a really nice view. You’ll even have your own room!” I don’t know if I responded out loud but I remember thinking, “I don’t really care about the view!”
I was put on a stretcher and wheeled to my new room while wearing a mask. It felt like a long ride on the stretcher just to go to the other side of the hospital.
After we got to my new hospital room, I was told that I wasn’t going to be able to leave the room. The room was an isolation room that had negative pressure. Meaning air could come into the room but it wasn’t able to leave the room so there wouldn't be cross contamination with the rest of the hospital.
It turned out there was a whole procedure for this room and my illness. Any time a medical professional wanted to enter my room, they had to wash their hands in the sink, which was in a little room connected to my hospital room. Before they could come into my actual hospital room, they had to put on a disposable gown, put on a mask and gloves. When they left, they had to remove all of the gear they put on and wash their hands again.
Any time a nurse came in and I needed to ask them for medication, or cranberry juice, or water, or anything like that, if they had to leave and come back it was a whole ordeal. I was there for about four days and I got into a rhythm with the nurses.
I would call the nurses’ station and say, “Okay, can you get me a cup of water and a cup of cranberry juice?” and I’d ask them for whatever I needed so that when they would come and make their rounds, they would have all of it and they wouldn’t have to leave and come back and waste time.
Side note: I was drinking cranberry juice because I had a slight UTI. Who knows if this was what caused my pain. They seemed to think it wasn’t serious and didn’t really seem to focus on it.
I'm all about efficiency LOL. I remember when another nurse came on shift, she told me, I heard you have a new system of calling the nurses' station. I like it, let's try that for my shift too.
To be continued…
To read part two, please click or tap over to read I was in denial that I had Tuberculosis.