Certain medications are nothing short of miracles for the patients who need them. Medications such as anti-rejection drugs, chemotherapy, and corticosteroids are life-saving for many patients, but like many treatments, these pharmaceutical marvels come with side effects. And at least one of these side effects requires some potentially significant lifestyle adjustments.
The side effect in question? These medications may increase your risk of infection.
In other words, the drugs like sirolimus, predisolne, Cyclosporine, Mycophenolic or tacrolimus jeopardize your immune system. They are immunosuppressant drugs.
Sounds alarming, but what does it even mean?
What does it mean if a drug is an immunosuppressant?
It means the medication has the potential to interfere with the processes in the body that prevent infection and this interference is what allows the medication to work.
How and why this happens depends on the particular drug. In general, however, the medication causes all or part of your immune system to “turn off” so that your body doesn’t go into attack mode, waging war against whatever it sees as a foreign invader.
Steroids and anti-rejection medications target T-cells, which are lymphocytes that control the immune response.
The anti-rejection protocol generally is just a shot to your system to suppress everything.
This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis. Are you going to need to live in a bubble from here on out?
What are the side effects of immunosuppressants?
Fortunately, in most cases, an actual bubble won’t be necessary. Unless there's a pandemic going on and you are ill-fated that the army to protect you is disarmed. However, it is extremely important to understand the outcomes of living with a compromised immune system so you can protect yourself.
Side effects of immunosuppressant medications may include gastrointestinal problems like diarrhoea, nausea, and vomiting. However, the most serious side effect of taking an immunosuppressant is the risk of infection.
That could mean catching every single bug your family member brings home from work or the very real possibility that a flu diagnosis will land you in the hospital. You are also more likely to experience complications from foodborne illnesses, bug bites, and environmental hazards (like mould). Oh, and you know all of those recent H1N1 outbreaks? You could be always at risk. Immunosuppressants also leave you at risk for very rare and difficult to treat infections, moulds fungal pneumonia and certain types of lymphoma.
Be diligent about basic hygiene procedures such as hand-washing. Everyone knows that hand-washing is the best thing you can do to avoid getting sick, but it is even more important for those who are immune-compromised and anyone who comes into contact with them.
Make sure to wash fruits and vegetables.
Avoid people who have active infections (don’t be shy about telling people to keep their distance, either).
You may need to wear a mask at times (if you are on an aeroplane and people are coughing, for example), and it is also wise to avoid large crowds.
Staying up-to-date on all of your vaccinations is extremely important.
Adopt healthy lifestyle practices (get plenty of sleep, exercise, and eat a healthy diet).
If you think you might be sick or show any signs of infection, call your doctor immediately. The wait-and-see plan that applies to so many other people does not apply to the immunocompromised population. This is especially true with fevers.
If there is a high fever, they need to run to the emergency room so they can see a healthcare provider but I got a mysterious fever when I got to the emergency room of Medanta the medicity at 2 am in the morning because I was getting tetany and needed calcium drip.
Soon after discharge from the hospital after liver transplant, I got viral infection varicella and was treated with Zovirax...my experience of first viral infection.
It was my plight when I was diagnosed with an RCC H1N1 was raging in Delhi and I had to commute to different hospitals because Medanta doctors wanted to do a needle biopsy before taking the tumour out. I would have gotten seeding that way and metastasis in the process would eventually have occurred. I travelled to different hospitals and got a cuckoo fever which wouldn't go. I couldn't get my blood tested for H1N1 and the clock was ticking because my RCC was 2.8 cms just a little below the threshold. The surgery was confirmed with Dr Gogoi at FMRI but still, he said he can't perform surgery with infection in the body.
By Divine will I thought of calling Dr Randeep Guleria, he gave me some medicine over the phone and green cough syrup and I believe it's his experiences and expertise that I recovered and became ready for the surgery.
I always wore a mask when I went out. I carried and still did till before the lockdown a hand sanitizer in my handbag. You can never take enough precautions.
During the winter months, my brother came to spend time with us. He has a sinus problem and gets a cough and cold because of the weather change the whole winter, I had no sleep spending time coughing away.
The ultimate example of the risk of infection is getting MDR-Tb. I was losing more weight than the exercises I was doing and the food I was taking. I never had outside food but still, the doctors didn't think of that. Two years after the liver transplant I had a bewildering high fever which puzzled the doctors. After three months of continuous fever with a swollen lymph node made the physicians think. The lymph nodes biopsy showed TB infection(AFB+). More than 4 months of being on anti-Tb-treatment showed lung condition worsening. HAIN test confirmed that the bacteria is resistant to Rifampicin, Isonazid and ethambutol hence a change was implemented but it didn't work and I stopped walking due to immense pain pelvis onwards. Head and Neck surgeon, Dr Handa removed the TB bacteria-infected lymph node, did surgery of lymphadenopathy.
Dr.Randeep Guleria of AIIMS changed the medicines to highest degree antibiotics and the expensive drugs cured MDR-Tb but till this day I need a walking stick to walk and can't do most of the daily jobs for which I have to depend on her 69 years old mother and I can't climb stairs.
All the time I use tissues, to wipe my face, eyes, nose because I was advised not to use a handkerchief as if you fold it in and use the other side the infection will be back and I don't have the power to fight them. My faithful troops have been disarmed or perhaps just turned off. I always wash my hands properly but in the freezing winters or when outside use hand sanitizer to control my infections.
Except for the lift at Medanta, I avoid crowded places. If you ever visit and have no problems with taking the stairs it's a better option. They have no discipline, a jostling crowd of people pushing, shoving and nudging a patient and I have to guard the vulnerable parts where I have had surgeries. They all want to get into the same lift and reach the doctor in time. Everyone is in a hurry. In the process many a times I have gotten hurt, I wonder what the management does with a big screen off CCTV in his room. I love clear airy spaces. Medanta hospital is like a railway station.
The trigeminal nerve is also involved with the teeth and often sets in tooth pain so under the advice of my transplant hepatologist I visited the dentist under antibiotic coverage last year. But after returning I felt feverish and fever rose to 105 degrees and three lymph nodes in the neck stood out.
Head and Neck surgeon who removed the TB bacteria-infected lymph node advised an ice bath to bring the temperature immediately down and then he treated it. This way I have suffered many unknown fevers, and infection dealt with doctors who know her low immune system and the disease.
Just before this pandemic, my trigeminal neuralgia went so high that my heart stopped jumping with joy, enjoying the elixir of life and as I learnt to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as a bolt of lightning right out of nowhere started me hitting again and again.
All my life I have kept looking for hope. I have undergone countless surgeries including cancer and liver transplant and a few life-threatening ones but I have never stopped hoping. Hope sustains us. I got this hope from Bombay who said he could definitely treat me by cyberknife radiosurgery.
Dr Shankar Vangipuram really kept me in a bubble. The hospital kept me admitted in a very good room with a "no visitors allowed" sign on the door and the doctor told everyone to use shoe covers, gloves and caps and aprons while entering my room. He told me to wear a mask always and to speak with anyone with a distance of 1 ft.
I am extremely happy the way they treated me and my disease. I need to go back to the left side of my brain again after 2-3 months. Unfortunately, the pandemic ruined my plans. The pain on the right side is better. Another weird thing is that if you draw a line in the exact middle of my face, the right nose, lips, cheek, skin under the eye feels leathery numb. I was quite alarmed and I thought my right nose might perhaps be running. I tried to blow it nothing came out. Thankfully I remembered in a few cases, numbness happens. I wondered then when I can safely get the left side done my entire face would be numb! He said numbness is better than pain.
Immunosuppression strategy during the COVID19 pandemic
Although there is a concern that organ transplant patients may be at a higher risk of COVID-19 infection, there is no evidence as of now to modify the immunosuppression protocol. Standard immunosuppression should be followed in the post-transplant period until further data is available.
Follow up post-transplant.
Patients should follow up with their respective centres as usual. It is strongly encouraged that the patient should avoid hospital visits for routine follow up and consult online via telemedicine.
There is a concern that immunocompromised patients are at a greater risk of morbidity and mortality due to COVID-19 infection, although data on liver transplant patients is limited at present.
Thus, I assume imprisonment in your own home isn't just a wise idea but a sensible one until it's safe outside. Well, not only that I have created my own bubble inside my own room. Cleaning every surface I touch with an alcohol-based cleanser. Things I use every day, using sanitizing wipes for my precious books and cleaning myself thoroughly every day. Wearing a mask when required. Living under great problems...with the geyser not working, A.C. not working but not letting in any repairmen.
From the tiny list of my past unforeseen infections and the way Tb has destroyed my lung power, I might say that the favourite God( ishta-devata) I believe in will not give me more.
