A day in the life of a patient suffering from Chagas Disease
Sometimes, a human body falls short of fighting a tiny organism. Even the intelligence of the mankind, which is considered supreme when compared to all other living beings, gets helpless against bacteria, parasites, and fungi. I am a perfect example of this. I am suffering from Chagas Disease, a type of parasitic infectionsspread mostly by insects known as Triatominae or kissing bugs. It is very difficult for me to accept the way my life has changed due to a tiny parasite. Here is how a day passes since I was diagnosed with this disease.
Waking up in the morning
My day begins with taking my treatment, composed from medications to relieve breathlessness. This infection is caused due to a parasite called Trypanosoma cruzi. It has affected my lungs, heart, and even the digestive system. I suffer from breathing difficulties especially in the morning. I get up from my bed and start with my routine activities only after the breathing is relieved. But, the pain in the knees and back continue to remain the obstacles in my way. I have to be very slow in performing morning rituals due to this pain as well as the fear of getting breathless again.
Starting the day
When I started developing the initial signs of Chagas disease, I used to get a few lesions on my skin. There was also a purplish swelling on the eyelids. I also used to get fever, headache, and muscle pains. Though these symptoms subsided within a few weeks, they gave way for other symptoms as the parasites continued to reside in my heart and digestive muscles.
As a result, I experience severe problems while eating, bathing, and carrying out other tasks. I am also suffering from a few neurological complications due to the nerve damage caused by these parasites. I get tingling and numbness in my hands and legs due to which making quick movements during the morning rush hours has become difficult.
Breakfast, lunch, and dinner
The muscles in my mouth, esophagus, and stomach have become weak due to Chagas disease. Because of this, I cannot chew or swallow the food properly. Sometimes, I have to drink almost 2 to 3 glasses of water to wash the food down into the stomach from the throat. I have started loathing the meal-times due to these annoying symptoms.
Though the doctor has advised me to stick to a nutritious diet, it is practically impossible due to these difficulties. I cannot even eat fruits, which ideally should be consumed in large amounts every day. Though there is no specific diet advised to me by the doctor, I do try to include as many nutrients as possible in my meals by eating cooked and mashed vegetables and drinking fruit juices as they are easy to swallow and do not need much of a chewing.
Going to work and taking medications
I am being treated with anti-parasitic medicines. However, the treatment was started a bit later after the symptoms began. Since the initial symptoms of Chagas disease were not very specific to the infection, the doctors were unable to identify the exact cause of my illness. So, I was treated with antibiotics and other medications to relieve the symptoms like fever and vomiting.
A new cure with some anti-parasitic drugs were started only when the diagnosis was confirmed. However, as a result, these medications were not as effective as they would have been had the treatment been started earlier. Luckily, this disease has not caused much of an impact on my professional life. I am able to drive to the office and complete my tasks. However, there are times when the symptoms flare up for which I have to be admitted. Also, on some days, I have to take a leave especially if the breathlessness is severe. But, I try to work harder to meet my professional commitments.
Prevention of complications
Unfortunately, there is no cure or vaccine for this disease. The only way to prevent the spread of this infection is through vector control. Even blood screening can help to prevent the spread of the parasites through blood transfusion or organ transplantation. The doctor has advised me to follow some precautions to prevent the parasites, Trypanosoma Cruzi, from spreading to others in my family.
He has advised me to spray my house and the surrounding areas with insecticides and maintain cleanliness to prevent breeding of the vectors. I also use bed-nets to ensure the disease doesn’t spread to others through vectors. Since this disease can also spread through the consumption of contaminated food and water, we have reserved a place for washing and storing the utensils used by me in a separate area.
What are the daily limitations and what are the fears?
Since this infection can be easily transmitted from one person to another, the fear is not just about my own illness, but also about others who might catch it. Additionally, the restrictions posed by this disease on my routine life has added to our problems. The financial burden due to the rising healthcare costs like hospitalizations, doctor visits, and treatment is also increasing. It is becoming difficult to manage the finances under this scenario.
How does the future look like?
Though I have so far managed to secure my job, I am not sure for how long I will be able to continue it. The symptoms have become worse over the past few years as my heart is affected due to Chagas Disease. It might become more difficult for me to keep up with my personal and professional responsibilities. And if this happens, life might take a turn for the worse.
What are the risk factors?
Since Chagas disease is an infection caused due to a parasite, its risk is higher in those having a low immunity. I developed this infection about 2 years back when I was passing through a very stressful period. I had perhaps neglected my diet and nutrition and even taken to alcohol to relieve the stress. These factors contributed to lowering my nutritional status and the immunity.
This gave a chance to the parasites to infest my body and destroy the health of my heart, and digestive organs. Another factor that can increase the risk of Chagas disease is consuming the food contaminated with the T. Cruzi parasites and exposure to the infected blood-sucking triatomine insects, like kissing bugs. The doctor told me this infection is also transmitted through the blood transfusion from infected donors and from an infected mother to a newborn baby during childbirth.
The evolution of Chagas disease
The initial symptoms of this infection lasted for a few weeks. I had developed some mild symptoms like fever, body aches, fatigue, headache, loss of appetite, skin rash, and vomiting. There was also a swelling of one eyelid probably due to the rubbing of eyes without washing my hands. However, though these symptoms reduced in intensity after the anti-parasitic treatment was started, they did not resolve completely.
I developed a few complications as the infection affected my heart and intestine such as cardiomyopathy, an altered heart rate and rhythm, and an enlarged esophagus and colon. The difficulties caused by these complications have become worse over the past few years, even I continue to use the treatment recomneded by my doctor.
What are the psychological effects when you have Chagas Disease?
The doctor has advised me to continue the treatment and take appropriate precautions as the complications can worsen and cause serious life-threatening situations such as cardiac failure. I am already trying to cope with the changes this disease has caused in my life. The worsening of my heart health and developing cardiac failure might be a final blow that I will not be able to bear! I pray that day never comes. But, my family and I continue to live in this fear! Writer: Dr. Jyothi Shenoy