Ramona

I’m an occupational therapist and live in Adelaide, SA. I’m 55 and I have a son and a daughter, both of whom are in their 20s.  

I wasn’t keen on the Covid jab when it was rolled out, but there was pressure for health care workers to take it. I knew that it would soon be mandated for community health workers and, sure enough, it was mandated a few months later. I had my first Pfizer jab on the 11th of July, 2021. I felt unwell afterwards but didn’t have a temperature. Ten days later, I experienced a choked at work when a tiny piece of food was difficult to dislodge. I coughed for about an hour trying to clear it. This had never happened to me before. A few days later, it happened again, and my son told me I had been coughing for two hours. After this incident, I took notes because this was very unusual.

After the two days of coughing, I struggled to swallow and my throat felt raw. I went on a soup diet with fresh bread broken up and dunked in. But by week’s end, even the softened bread was difficult to swallow and I could only eat pureed soup.

On the 30th of July, I saw a GP and described my experiences. She advised me to have an endoscopy, but I decided to wait a bit longer. I explained I was concerned about having the second jab because of what was happening, but she said to go ahead. I wasn’t totally comfortable with her response but went ahead anyway.

I had the second Pfizer jab on the 1st of August (left arm) and my lymph nodes swelled on my left side a few days later. A feeling of fullness followed, especially with food. I’d have a spoonful or two of soup after work and would feel full to my neck. This happened every day. I had to sit upright in the evening—sometimes for a few hours—until the fullness settled, even though I hadn’t eaten much. I could only tolerate smoothies, soups, custard, and jelly at this time.

I returned to the GP on the 13th of August and asked to see a specialist. The GP referred me for an endoscopy after I described my symptoms. She didn’t prescribe anything as she didn’t want it to interfere with the endoscopy results. I rang later that day and asked for something to reduce inflammation as my symptoms had worsened. Reluctantly, she prescribed Omeprazole, which I found out later is used to treat reflux.

I struggled to swallow water the same evening, so my son took me to a hospital Emergency department. I was not choking at the time, so they were very reluctant to admit me. It was only when they saw I could not swallow water that they put me on a drip and admitted me for two nights. 

 The hospital gastroenterologist saw me the day after my admission and he didn’t believe me about my swallowing difficulty. He thought I had simply panicked during the first incident. “No,” I said, “that’s not who I am. I’m level-headed and an allied health professional.”  I had to tell him a few times that something was not right and that I was scared. It was then that he listened.  He took my bloods and examined me thoroughly, especially for a neurological cause for my symptoms. I told him how it all started 10 days after the first jab, “Not that I think they are connected,” I said.  He said he’d seen some unusual things following the jab, so maybe they were connected.  This made me think about how I’d felt after the first jab and that nothing else about my life had changed at that time. 

They struggled to find suitable food for me, so a speech pathologist assessed me and recommended I try minced food and gravy. I had two spoonsful of dinner and it got stuck somewhere in my oesophagus (food tube). I panicked, though my breathing was unaffected.  After 15-20 minutes, it went down as I stood talking to the nurse. 

 I had an endoscopy on the 16th of August, which came back clear. On the 19th of August, I had a Barium Swallow—a video X-ray that shows how liquid moves down the food tube. I could feel the liquid barium slowing down and staying in some spots. Immediately, I knew something was not right. The registrar and a junior doctor were about 1.5 metres away from me, watching the screen and talking. The registrar dropped his tone, and I could tell he didn’t want me to hear something. I strained to listen but couldn’t make out much. They moved to another computer, checking everything had been captured. The technician showed me the video and told me the barium liquid had gone down. I pointed at the screen and said it was stuck because I‘d felt it during the procedure. She neither confirmed nor denied my statement

On the 1st of September, I got an outpatient appointment at the same public hospital, but it was with the wrong unit and specialist. To not waste my time, I asked for my endoscopy and Barium Swallow results as I hadn’t been provided anything yet and knew it was my opportunity to ask (public hospitals don’t normally give results). The specialist begrudgingly gave them to me. The Barium Swallow results confirmed the liquid was slowing down as it descended the oesophagus. He mentioned it was best to see the specialist who saw me in hospital.

 On the 11th of September, I went to my GP as I still hadn’t received an appointment. I had done my research and asked to be referred to the Swallowing Disorders clinic to see that specific specialist. A few days later, I was asked to come in on the 17th of September for a manometry—a diagnostic procedure that measures the pressure within the oesophagus as we swallow. The manometry showed I’d lost all function in my oesophagus (which explained my swallowing difficulty). I also had a delayed opening of the lower oesophageal sphincter (at the top of the stomach) and weak contractions just above the stomach. It’s the co-ordinated effort of the wave-like contractions (peristalsis) in the oesophagus and the opening of this sphincter that helps to move the food into the stomach. I was at this stage taking Omeprazole, which worked to reduce the feeling of fulness from the reflux. It made me very constipated, however, and I had to have a suppository and stool softener. I was later prescribed Pantoprazole, which also helped reduce the reflux but without the negative effects. I now must take this daily.

 On the 23rd of September, I had my first outpatient appointment with the Swallowing Disorders clinic. A speech pathologist wanted to try me on soft foods and recommended a Modified Barium Swallow—in which you eat small amounts of food of various textures and it’s videoed as it goes down. I panicked because I recalled the food getting stuck in hospital. I agreed, however, as I had been on a liquid diet for over eight weeks now and was extremely weak and losing weight steadily. Although I wasn’t too concerned about the weight loss (I was quite a bit larger), it was unhealthy weight loss—I lost 22kg in about six months.

I then saw the gastroenterologist at this clinic. I asked for the Manometry results and he said he hadn’t written them up because he didn’t have a diagnosis. I then asked about the results from the bloods done in hospital; he said it showed some raised autoimmune markers and consulted his colleague (a rheumatologist) who said to run the tests again. The gastroenterologist later posted me the results (he called it oesophageal dis-motility). He also explained at the appointment that this is so rare that he’d only seen one other person who had lost all motility (contractions) in his whole career (he was a senior specialist). The reflux was a direct result of the loss of function and tone in my oesophagus.

 On the 7th of October, I underwent the Modified Barium Swallow. They gave me different foods—banana, wafers etc.—to see what I could tolerate and to get me off the liquid diet. The video X-ray showed the food travelling back up the food tube due to the weak contractions in the lower part of the food tube. Afterwards, the speech pathologist told me to eat soft, moist foods, have a sip of water after each mouthful, and to eat little and often, and they’d see me in two weeks. I next attended the The Swallowing Disorders Clinic was on the 21st of October. I was still experimenting with different foods and I told the speech pathologist the guidelines did not work for me. They didn’t know how to help me. 

The results from the second blood test showed a weak positive to some autoimmune markers. They then said they’d see me in three months and redo the bloods. The next few months were terrible. I suffered psychological distress because food often stayed for long times somewhere in my oesophagus. It would eventually clear, but I could not control it and my body was constantly going into a panic mode when it happened. I had stopped going out with friends or with my kids. Christmas was a disaster. I was often hungry. Eating was no longer pleasurable and mealtimes were scary.

I skipped meals because it was difficult to eat small, regular meals while working and my energy-levels declined. I still worked four days per week. Work gave me structure and focus, but when I got home, I felt overwhelmed about my life.  

During this time, the Covid booster was mandated for healthcare workers and I tried to get an exemption. I had a GP appointment on the 1st of February, 2022 where she told me I’d be fine to have the Moderna booster. “Your condition”, she said, “won’t worsen.” I could not believe what I was hearing. Thankfully, my gastroenterologist assisted me to get a six-month exemption (after two attempts!) because if I lose more function, I will need a feeding tube inserted. 

In mid-to-late January, I had difficulty with thicker yoghurts and even my treats of Crème Caramel had become hard to swallow. I was concerned, but I didn’t mention it at the Swallowing Disorders clinic appointment on the 10th of February as I was still monitoring it. 

I lost three kilos over a few days, so I returned to my GP on the 25th of February and I asked if I could go back to the clinic earlier than my scheduled April appointment. I was also desperate and spoke to my GP about quitting my job as I was totally exhausted. I had little energy from my mostly liquid diet and the weight loss. I ended up taking a month off work from the 25th of February.

The appointment was bought forward to the 24th of March. My specialist wasn’t too concerned when I told him what I was experiencing. But my speech pathologist recommended a second Modified Barium Swallow, which I had on the 31st of March. I took in foods I’d been struggling with, including ripe banana. The video X-ray showed that food was now getting stuck just below the upper oesophageal sphincter (at the top of the food tube). I felt validated when the speech pathologist could see it happening on screen, so I knew I wasn’t going mad. She said to only eat very moist, soft foods (what I call sloppy baby food). She also told me not to cough—which is what my body wants to do reflexively—because that can cause the food to go back up and into the airways. Instead, I was to wash food down with water if it got stuck.

I had a phone consult with my gastroenterologist on the 7th of April and he confirmed it was not looking good. He had already referred me to a rheumatologist (upon my insistence). I was told the wait would be 12-15 months. Thankfully, I received an appointment for the 2nd of June.  The rheumatologist confirmed I don’t have an autoimmune disorder and wants to rule out myositis, although I don’t have any of other symptoms. If it’s not myositis, I was told, I would just “have to live with this.” That was hard to hear.

I still don’t have any answers from the medical community. They say if they can find the cause, they can work on the problem. It’s messed with my head as my mind keeps saying “something’s not right” and I’ve been affected psychologically. I have not given up seeking medical input as my swallowing disorder continues to impact my life. 

Nothing about eating is straightforward; I am wary of ‘new’ foods and need to think hard about my social life as so much of our socialising is around food. I live in a strange world. I eat foods a 9-month-old baby eats, usually without issue—sloppy, very soft food. Sometimes, I can only have smoothies for dinner. There have been many traumatic, overwhelming eating incidents. People can’t see it and don’t understand why it’s not improving. And because I’m not 90, many people don’t understand why I can’t eat what’s on the menu, and it’s hard to explain, without coming close to tears.

In the first few months, my family, friends, and colleagues regularly asked me if I was better. Some continue to ask. Those conversations are draining and hard because I am constantly repeating myself, and no one understands.  I finally managed to connect with a couple of people internationally—one of whom has what I have after the Pfizer jab. She is in Canada. It’s good not to have to justify myself and to have someone who understands. Although my energy levels are slightly better, I’ve recently had to quit my job. I work on a casual basis as the flexibility helps me manage my energy levels. If I don’t get another exemption from the Covid booster (now legislated in South Australia for healthcare workers), I will be unable to work after the end of August when my current exemption ends.

 

I’m an occupational therapist and live in Adelaide, SA. I’m 55 and I have a son and a daughter, both of whom are in their 20s.  

I wasn’t keen on the Covid jab when it was rolled out, but there was pressure for health care workers to take it. I knew that it would soon be mandated for community health workers and, sure enough, it was mandated a few months later. I had my first Pfizer jab on the 11th of July, 2021. I felt unwell afterwards but didn’t have a temperature. Ten days later, I experienced a choked at work when a tiny piece of food was difficult to dislodge. I coughed for about an hour trying to clear it. This had never happened to me before. A few days later, it happened again, and my son told me I had been coughing for two hours. After this incident, I took notes because this was very unusual.

After the two days of coughing, I struggled to swallow and my throat felt raw. I went on a soup diet with fresh bread broken up and dunked in. But by week’s end, even the softened bread was difficult to swallow and I could only eat pureed soup.

On the 30th of July, I saw a GP and described my experiences. She advised me to have an endoscopy, but I decided to wait a bit longer. I explained I was concerned about having the second jab because of what was happening, but she said to go ahead. I wasn’t totally comfortable with her response but went ahead anyway.

I had the second Pfizer jab on the 1st of August (left arm) and my lymph nodes swelled on my left side a few days later. A feeling of fullness followed, especially with food. I’d have a spoonful or two of soup after work and would feel full to my neck. This happened every day. I had to sit upright in the evening—sometimes for a few hours—until the fullness settled, even though I hadn’t eaten much. I could only tolerate smoothies, soups, custard, and jelly at this time.

I returned to the GP on the 13th of August and asked to see a specialist. The GP referred me for an endoscopy after I described my symptoms. She didn’t prescribe anything as she didn’t want it to interfere with the endoscopy results. I rang later that day and asked for something to reduce inflammation as my symptoms had worsened. Reluctantly, she prescribed Omeprazole, which I found out later is used to treat reflux.

I struggled to swallow water the same evening, so my son took me to a hospital Emergency department. I was not choking at the time, so they were very reluctant to admit me. It was only when they saw I could not swallow water that they put me on a drip and admitted me for two nights. 

 The hospital gastroenterologist saw me the day after my admission and he didn’t believe me about my swallowing difficulty. He thought I had simply panicked during the first incident. “No,” I said, “that’s not who I am. I’m level-headed and an allied health professional.”  I had to tell him a few times that something was not right and that I was scared. It was then that he listened.  He took my bloods and examined me thoroughly, especially for a neurological cause for my symptoms. I told him how it all started 10 days after the first jab, “Not that I think they are connected,” I said.  He said he’d seen some unusual things following the jab, so maybe they were connected.  This made me think about how I’d felt after the first jab and that nothing else about my life had changed at that time. 

They struggled to find suitable food for me, so a speech pathologist assessed me and recommended I try minced food and gravy. I had two spoonsful of dinner and it got stuck somewhere in my oesophagus (food tube). I panicked, though my breathing was unaffected.  After 15-20 minutes, it went down as I stood talking to the nurse. 

 I had an endoscopy on the 16th of August, which came back clear. On the 19th of August, I had a Barium Swallow—a video X-ray that shows how liquid moves down the food tube. I could feel the liquid barium slowing down and staying in some spots. Immediately, I knew something was not right. The registrar and a junior doctor were about 1.5 metres away from me, watching the screen and talking. The registrar dropped his tone, and I could tell he didn’t want me to hear something. I strained to listen but couldn’t make out much. They moved to another computer, checking everything had been captured. The technician showed me the video and told me the barium liquid had gone down. I pointed at the screen and said it was stuck because I‘d felt it during the procedure. She neither confirmed nor denied my statement

On the 1st of September, I got an outpatient appointment at the same public hospital, but it was with the wrong unit and specialist. To not waste my time, I asked for my endoscopy and Barium Swallow results as I hadn’t been provided anything yet and knew it was my opportunity to ask (public hospitals don’t normally give results). The specialist begrudgingly gave them to me. The Barium Swallow results confirmed the liquid was slowing down as it descended the oesophagus. He mentioned it was best to see the specialist who saw me in hospital.

 On the 11th of September, I went to my GP as I still hadn’t received an appointment. I had done my research and asked to be referred to the Swallowing Disorders clinic to see that specific specialist. A few days later, I was asked to come in on the 17th of September for a manometry—a diagnostic procedure that measures the pressure within the oesophagus as we swallow. The manometry showed I’d lost all function in my oesophagus (which explained my swallowing difficulty). I also had a delayed opening of the lower oesophageal sphincter (at the top of the stomach) and weak contractions just above the stomach. It’s the co-ordinated effort of the wave-like contractions (peristalsis) in the oesophagus and the opening of this sphincter that helps to move the food into the stomach. I was at this stage taking Omeprazole, which worked to reduce the feeling of fulness from the reflux. It made me very constipated, however, and I had to have a suppository and stool softener. I was later prescribed Pantoprazole, which also helped reduce the reflux but without the negative effects. I now must take this daily.

 On the 23rd of September, I had my first outpatient appointment with the Swallowing Disorders clinic. A speech pathologist wanted to try me on soft foods and recommended a Modified Barium Swallow—in which you eat small amounts of food of various textures and it’s videoed as it goes down. I panicked because I recalled the food getting stuck in hospital. I agreed, however, as I had been on a liquid diet for over eight weeks now and was extremely weak and losing weight steadily. Although I wasn’t too concerned about the weight loss (I was quite a bit larger), it was unhealthy weight loss—I lost 22kg in about six months.

I then saw the gastroenterologist at this clinic. I asked for the Manometry results and he said he hadn’t written them up because he didn’t have a diagnosis. I then asked about the results from the bloods done in hospital; he said it showed some raised autoimmune markers and consulted his colleague (a rheumatologist) who said to run the tests again. The gastroenterologist later posted me the results (he called it oesophageal dis-motility). He also explained at the appointment that this is so rare that he’d only seen one other person who had lost all motility (contractions) in his whole career (he was a senior specialist). The reflux was a direct result of the loss of function and tone in my oesophagus.

 On the 7th of October, I underwent the Modified Barium Swallow. They gave me different foods—banana, wafers etc.—to see what I could tolerate and to get me off the liquid diet. The video X-ray showed the food travelling back up the food tube due to the weak contractions in the lower part of the food tube. Afterwards, the speech pathologist told me to eat soft, moist foods, have a sip of water after each mouthful, and to eat little and often, and they’d see me in two weeks. I next attended the The Swallowing Disorders Clinic was on the 21st of October. I was still experimenting with different foods and I told the speech pathologist the guidelines did not work for me. They didn’t know how to help me. 

The results from the second blood test showed a weak positive to some autoimmune markers. They then said they’d see me in three months and redo the bloods. The next few months were terrible. I suffered psychological distress because food often stayed for long times somewhere in my oesophagus. It would eventually clear, but I could not control it and my body was constantly going into a panic mode when it happened. I had stopped going out with friends or with my kids. Christmas was a disaster. I was often hungry. Eating was no longer pleasurable and mealtimes were scary.

I skipped meals because it was difficult to eat small, regular meals while working and my energy-levels declined. I still worked four days per week. Work gave me structure and focus, but when I got home, I felt overwhelmed about my life.  

During this time, the Covid booster was mandated for healthcare workers and I tried to get an exemption. I had a GP appointment on the 1st of February, 2022 where she told me I’d be fine to have the Moderna booster. “Your condition”, she said, “won’t worsen.” I could not believe what I was hearing. Thankfully, my gastroenterologist assisted me to get a six-month exemption (after two attempts!) because if I lose more function, I will need a feeding tube inserted. 

In mid-to-late January, I had difficulty with thicker yoghurts and even my treats of Crème Caramel had become hard to swallow. I was concerned, but I didn’t mention it at the Swallowing Disorders clinic appointment on the 10th of February as I was still monitoring it. 

I lost three kilos over a few days, so I returned to my GP on the 25th of February and I asked if I could go back to the clinic earlier than my scheduled April appointment. I was also desperate and spoke to my GP about quitting my job as I was totally exhausted. I had little energy from my mostly liquid diet and the weight loss. I ended up taking a month off work from the 25th of February.

The appointment was bought forward to the 24th of March. My specialist wasn’t too concerned when I told him what I was experiencing. But my speech pathologist recommended a second Modified Barium Swallow, which I had on the 31st of March. I took in foods I’d been struggling with, including ripe banana. The video X-ray showed that food was now getting stuck just below the upper oesophageal sphincter (at the top of the food tube). I felt validated when the speech pathologist could see it happening on screen, so I knew I wasn’t going mad. She said to only eat very moist, soft foods (what I call sloppy baby food). She also told me not to cough—which is what my body wants to do reflexively—because that can cause the food to go back up and into the airways. Instead, I was to wash food down with water if it got stuck.

I had a phone consult with my gastroenterologist on the 7th of April and he confirmed it was not looking good. He had already referred me to a rheumatologist (upon my insistence). I was told the wait would be 12-15 months. Thankfully, I received an appointment for the 2nd of June.  The rheumatologist confirmed I don’t have an autoimmune disorder and wants to rule out myositis, although I don’t have any of other symptoms. If it’s not myositis, I was told, I would just “have to live with this.” That was hard to hear.

I still don’t have any answers from the medical community. They say if they can find the cause, they can work on the problem. It’s messed with my head as my mind keeps saying “something’s not right” and I’ve been affected psychologically. I have not given up seeking medical input as my swallowing disorder continues to impact my life. 

Nothing about eating is straightforward; I am wary of ‘new’ foods and need to think hard about my social life as so much of our socialising is around food. I live in a strange world. I eat foods a 9-month-old baby eats, usually without issue—sloppy, very soft food. Sometimes, I can only have smoothies for dinner. There have been many traumatic, overwhelming eating incidents. People can’t see it and don’t understand why it’s not improving. And because I’m not 90, many people don’t understand why I can’t eat what’s on the menu, and it’s hard to explain, without coming close to tears.

In the first few months, my family, friends, and colleagues regularly asked me if I was better. Some continue to ask. Those conversations are draining and hard because I am constantly repeating myself, and no one understands.  I finally managed to connect with a couple of people internationally—one of whom has what I have after the Pfizer jab. She is in Canada. It’s good not to have to justify myself and to have someone who understands. Although my energy levels are slightly better, I’ve recently had to quit my job. I work on a casual basis as the flexibility helps me manage my energy levels. If I don’t get another exemption from the Covid booster (now legislated in South Australia for healthcare workers), I will be unable to work after the end of August when my current exemption ends.

 

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