Somehow, I have been lucky enough to cheat death three times so far this year. I’m one of those sick people, there is always something trying to kill me. The most prevalent this year is my anaphylaxis. Anaphylaxis is a rare and fatal allergic reaction that I get to peanuts. So far, my younger sister is the only other person I know with this kind of allergy. And she gets them to cashews. Oddly enough, she loves peanuts and I love cashews, I’m eating them even now as I write this. But I digress.
Unfortunately, this condition is becoming more common, but that also means that there is more awareness being spread about it. Having grown up in Australia, my peanut allergy was something I had come to manage quite well. A peanut allergy is the most common food allergy, so it was always well signed and easy to avoid. I think my last hospitalization from peanuts was three years before I left Australia. That was from an ex-boyfriend accidentally giving me the wrong muesli. Even though he did verbally confirm twice it didn’t have peanuts, but that’s another story!
In the last 12 months since I have been in India, I have been hospitalised for anaphylaxis four times. Very nearly five if I were not so stubborn. The scariest part about having anaphylaxis in India is that they do not understand this condition at all. They don’t seem to have it, which means that doctors are always completely unaware of how to treat it.
My reactions in India have been so much worse than they ever were in Australia. I’m not sure if this is directly related to the amount of time it takes to treat them, or if my body is just wearing out and can’t handle it anymore. Twice now during a reaction I have had seizures. The most recent has taken me a long time to recover from.
My brain function was reduced drastically. I couldn’t even keep up with a conversation with people whose first language wasn’t even English! I am starting to become more cognitive now, which is why I have decided to write this article. I’m hoping it helps to spread awareness to India so that they can continue to save lives.
I had an alarming number of Indian friends contact me saying they had no idea an allergy could do this. I’ve been lucky to always have a westerner around me whenever I’ve had a reaction and they mostly know what to do. Hopefully, this article can help some of my Indian friends get an understanding of how to react in these situations. And perhaps they can help someone if they ever happen to be in the situation.
To give a proper understanding of what happened, I need to give a bit of a back story. I had been unwell for about a week with stomach pains, fever and gastro like symptoms. After a week of this, I found out that I had inflammation in my intestines. (hopefully not another underlying disease I have to deal with at a later date – classic diary of a sick girl stuff.) which was what was stopping me from being able to eat.
Naturally after this long I was exceptionally weak, and my friends had growing concerns for me. One of my friends had been trying to encourage me to eat, but I often declined because I was feeling unwell or it simply wasn’t worth the pain. One day she told me she got some boiled vegetables and invited me to the rooftop to eat them with her.
This day I was starving and gladly obliged. She had with the vegetables two sauces, one hummus (YUM!) and the other paprika. Naturally I started scoffing into the hummus, and she really wanted me to try the paprika because it was really nice. I dismissed it because I didn’t want to risk anything spicy with my stomach in the condition it was. She insisted that it wasn’t spicy and that I try it. So I did, and immediately said it was spicy. She looked at me oddly but kept talking.
Almost instantly I noticed the tingling in my lips and issues with my throat. I was analysing them as she was talking, but I wasn’t able to listen to her. I was second-guessing myself about whether I was having an allergic reaction, or if it was just that I’d had some kind of spice after a week of not eating, and my body just wasn’t used to it.
After about a minute there was a break in the conversation, and I told her I thought I was having a reaction. Poor Steffi had been with me two months prior when I had taken a bite of a cinnamon roll that I hadn’t suspected to have peanuts in. I almost died on her lap in the back of a strangers car after that. So she knew what she was in for if I was having a reaction.
She said that she had confirmed that the sauces were vegan and peanut-free when she tried to get me to eat a few days ago. But asked if I wanted her to call and confirm anyway. She called, and sure enough, it was a satay sauce.
Her face dropped and she turned to me saying we had to go to the hospital. While she went running off to find someone to take us, I walked down to my room to get my Epi-pen, passport and bag. There was a friend in my room, and I told him I would be going to the hospital and what had happened. He asked if I wanted him to come, and I said it would be handy to have someone who spoke Hindi with me.
I made my way out the front of the hostel and sat on the ground, knowing that my legs would not be working for too much longer. Steffi came out and found me and administered the Epi-pen. For some reason, this is something I struggle to do myself, even knowing that it will save my life. I’m not sure if it’s that I’m scared of needles or if I always second guess myself as overreacting. I’m never overreacting and shouldn’t do this, but hopefully I learn that one day.
When I have an allergic reaction, two things will kill me. Suffocation from the swelling in my throat, or heart failure due to the drastic drop in heart rate that comes with anaphylaxis. Using an Epi-pen basically eliminates the possibility of heart failure. My resting heart rate is generally somewhere around 60 bpm. But with the Epi-pen injection, it sits at around 120 for a few hours, getting me through the danger zone.
If you’re like me and always try to avoid using an Epi-pen, please just don’t. It will save your life. Your heart rate will drop out of nowhere and it might be too late by the time you realise it’s happening. But back to the story. We found someone to take me to the hospital. Everyone was insistent I went to a smaller private hospital, rather than the one I had been treated at before. I let them know that that small one was unable to treat me as I had been in this situation before, and that we had to go to AIIMS, the bigger government hospital.
During the car ride, it became apparent that we were going to the smaller hospital anyway. My Indian friend called the hospital to make sure they understood what was happening and that they could treat me. They assured him that they could, although I was unaware of the conversations happening. I remember being quite impressed at the amount of time I was conscious for. This was the first time I had used an Epi-pen that wasn’t expired and wow, what a difference!
I remember looking at the hospital as we arrived, seeing that it was the one I knew couldn’t treat me. It was then that my body gave up. My friends Steffi and Anoop were trying to get me out of the car, but I am no lightweight. I am a 5ft 10, 75kg human, and a deadweight always seems heavier. After a while they managed to get me onto a stretcher, although they were getting no help from anyone around. I was still mentally conscious at this time, however had no control over my body.
Being in the midst of a global pandemic, in a country that doesn’t understand allergies, I understand why people were too scared to touch me. Finally I got inside, and have vague recollection of people shuffling around me and my finger being pricked. After five minutes my friends were advised that there was no doctor at the hospital, and they would be unable to treat me. I would need to get an ambulance to AIIMS.
This was when Steffi started crying, knowing how much time we had just wasted and unsure how much time I had left in me. They ran me outside and started screaming for an ambulance. This is where I started to completely lose consciousness. I was told a man said he would help, but had no idea of the level of emergency. He walked to one ambulance, got in, checked the windows and got back out. He slowly walked to the ambulance next to it and started searching for keys.
At this point my Indian friend asked him to hurry up, but he just said to let him do his job. Eventually he found the ambulance he wanted to take me in, and started exceptionally slowly and carefully driving me to AIIMS. When we reached, again my friends were required to get me out of the ambulance themselves. While running around looking for a stretcher to put me on, Steffi was constantly being told to put a mask on me. Even though she was pleading that I already couldn’t breathe.
Eventually they got me into the ER for treatment after describing what was happening. I remember waking up just before I started to have seizures, to a lady smashing her hand on my chest screaming for my name. I wasn’t able to speak, and I simply looked at her before my body started convulsing. She rolled me to the side to stop me from hurting myself while I was having a seizure and gave me an injection. When it had stopped, she rolled me to my back and started screaming for my name again before another seizure started.
At some point they had gone out to speak with my friends to ask how long I had been having seizures. They weren’t aware of this as it was happening in the ER. So Steffi told them that it had happened before during a reaction. They decided to take me for CT scans, EEG and ECG. Steffi told me a few days after she had briefly seen a printout of one report and that there were breaks in it which had freaked her out.
I woke up a few hours later dazed and confused. Clearly I wasn’t thinking straight because I immediately got up from my bed with the idea that I would go for a cigarette and find my friends. I was met by some doctors who told me I definitely couldn’t do this. This upset me, but I was not conscious enough to fight them. I was told that I had to stay for monitoring. This was normal, I was usually kept for a while after a reaction until I gained back my consciousness and was out of the danger zone. I didn’t realise how long I had already been in there though.
One nurse came through, and I started questioning her about when I would be released, a brief vision I have of going into the CT scanner and wanting to know results, and if I could see my friends. Thinking back to that now, and also reading the messages to my friends, I’m not sure if she understood me. I definitely wasn’t able to string a sentence together. She told me I would be there for a few days. That made me more confused and of course concerned.
After questioning different people throughout the day, I found out that I had to wait for my coronavirus report before I could leave. I was told that it would take between 24-36 hours to produce. I was brought lunch at some point, and realised I would be unable to eat it. Remember the inflamed intestines I spoke about? Yep, that’s still there. So I couldn’t eat the curry they were bringing me. And I realised that I would be unable to recover from my peanut allergy whilst in the hospital.
After an allergic reaction, I need to eat a ludicrous amount of food. So I spoke with the doctor and asked if I could do home quarantine while waiting for my report. The same as I had done two months earlier when I had been hospitalised for the same thing. He had said no, and then I explained my situation, saying that I would only get further unwell by staying there being unable to eat. Eventually he agreed to allow me to be discharged against medical advice. But that this would take an hour or so to get through.
After 6 hours of being told to wait 5-10 minutes, I’d had enough. I had been in the hospital for 24 hours. My hand was the size of a small football because an injection had been administered wrong. I’d lost my shoes in the ER and when I had asked for slippers to use the bathroom, I was presented with slippers coated in fresh blood. I wanted to get out, everything was going wrong.
I wasn’t aware that I was not all there in mind. In my head, I thought I was fine and just needed to eat and sleep. At one point I took off my hospital gown and sat on my bed ready to leave. One doctor came past and waved at me, and I took that as confirmation I was able to leave now. I think it was more that he saw me in my normal clothes and wanted to wave goodbye in case he didn’t see me again.
So I walked out into the lobby and was told to go back to my room. By this point I was exceptionally obnoxious. I was refusing to go back to my room as I knew that I would again be out of sight and out of mind. I demanded to be released and told them that I would be waiting there until it happened.
There were a series of hurdles to go through to get released. One of them being that payment had to be made, but not by me. For some reason, they needed someone else to pay. At one point there were 40 people standing around watching the spectacle that was my tantrum. I was stating how ridiculous it was that I was stuck in this hospital, unable to pay for myself, that my hand was huge and that no one could tell me anything about any of the tests I had received the night before.
They made me read and sign documents, but I didn’t have enough of a brain to take in the information that I was reading. I was fed up, so just signed it anyway and I was released. I remember being dazed and confused walking through the hospital. At one point it dawned on me that I had been in the wrong ward.
The doctors and nurses in my ward were wearing three surgical masks, a face shield and their scrubs taped up. No one else in the rest of the hospital was dressed like that. I am not sure at what point I realised that I had been in the coronavirus confirmed ward, but judging from a message to my family it was some time that night or the following morning.
So that was the ordeal that was the hospital. The following day I was meant to get my report. But found out that it was Sunday, so I would have to wait another day. I was glad I left at this point because I had been wondering if I had done the right thing. Finding out I would have had to go longer than three days without food made me happy with my decision.
On the Monday I found out that India doesn’t actually issue reports for negative results. So somehow, I was in the clear. That was one less thing on my plate, and I could start focusing on getting better. While I had been in isolation my friends had been bringing me food, although I often couldn’t eat.
It has taken five days for my brain to catch up, and I’m still not even at 100%. I’m not sure if the reduced brain capacity is due to the seizures, lack of nutrition, or the length of time my body was in trauma before it was treated.
Perhaps it could have been a different outcome, and very likely a much worse one. My brain could not be recovering, or I could not even be sitting here writing this. And perhaps it could have been much better if there was a better understanding of allergies within India.
My Indian friend told me he showed a doctor my Epi-pen and he was very impressed. He even took pictures of it and asked where I got it. My friend told him that I had it shipped from Australia, and it had arrived literally right on time. I’m currently without one now, but have another two on their way from Australia.
When this had happened two months ago, I was reprimanded by a doctor for taking an Epi-pen injection without first getting permission from a healthcare professional. This just goes to show how little knowledge and understanding there is of allergies within India. The fact that one doctor thinks an Epi-pen should never have been used, and another doctor understands that it is a lifesaving medication. But unfortunately, it is not something available in India.
I’ve now decided that it’s time for me to leave India, this being one of the main reasons. I have defied death more than luck should allow; and I know this can’t continue. Steffi urged me to go somewhere that was more understanding of allergies so that I don’t accidentally end up killing myself.
One day I actually took the time to look up travelling with a peanut allergy. I saw a blog from one family who had a small child with a peanut allergy. And to my surprise they noted India as one of the safe countries and that they rarely came across peanuts. I told my Indian friends this, wondering if I had just constantly gotten unlucky or if they were wrong. They laughed and said that peanuts are used frequently, which I had found to be true from my experience.
Perhaps the difference in demographic makes it easier for them, they travel as a family and likely eat at restaurants. I’m a nomad in my 20’s and get emerged into the culture. But each of the times it has happened, I would not have expected it. Once at a yoga school, another at a vipassana, once in a cinnamon roll and then with boiled vegetables. Both the yoga school and vipassana were told I had a peanut allergy, but I guess they did not understand.
The cinnamon roll was entirely my fault, I wouldn’t have expected peanuts in something like that. This is likely because I grew up in Australia and it wouldn’t happen there. Thinking that it was a western food, naturally it wouldn’t be in the cinnamon rolls in India either. This time, my friend was told it was paprika sauce the last time she ordered. And shedidn’t think to ask when she ordered it a second time.
India is a place that you have to exercise EXTREME caution when it comes to peanut allergies. Check everything and ask at least three times if you’re unsure. If you’re going to India, the word for peanut in Hindi is ‘Mungfuli’ well at least that’s how it’s pronounced.
I even have a card that has translated into a bunch of different languages ‘I am vegan and have a peanut allergy’. This hasn’t actually worked so well. In Japan they thought my name was vegan! And I know that being vegan with a peanut allergy rules out a lot for me, peanuts are commonly used in vegan foods. But I still think it’s better to have that card and hope that it helps rather than to not have anything.
If you’ve got anaphylaxis but haven’t had an episode in a while, you need to be prepared. If you’re anything like me, you won’t be able to speak after about 10 minutes. You will lose consciousness after 20-30 minutes. If you’re in a country that doesn’t understand allergies, have something on you that explains it. Always take your Epi-pen with you, even after you have used it so that the doctors can see what medication you’ve had.
Hopefully this post helps both Indians understand what happens to a body during an episode of anaphylaxis, and the friends of sufferers understand what is happening to their friends, and how to get them the medical assistance they need.
Love Always,
Lala
