Gagandeep Singh Chandok, 37, who has thalassemia, shares with us the long hours spent at the blood transfusion centre every fortnight and how he keeps himself busy.
I have been receiving blood transfusion from the time when I was one-and-a-half-years old. I was required to take blood transfusion every 15 days to survive.
My mom tells me I was very uncomfortable with the needle inside me and screamed my lungs out. Till the age of four, the sight of the hospital would freak me. I would start protesting and rebelling at the entrance itself. By the time I reached the transfusion centre, half the hospital knew I had arrived. I would curse the doctors and nurses, use the choicest expletives and create a big ruckus. Often I had to be pinned firmly by hospital staff for my transfusion.
With time, I mellowed and became more accepting of my thalassemia and the transfusions. My mother would always accompany me, and, on most transfusion sessions, I would fall off to sleep.
Coming alone for transfusion
Today, I am 37. I still go for transfusion every fortnight. The only difference is that now my mother does not escort me. For the last eight years, I have been coming alone. She says I have to learn to become independent.
Since I began working, I prefer going for my transfusion on Saturdays or on days off at office. The treatment lasts for six hours. When you add it up, I have already spent more than 3,500 hours getting blood transfusion in my life. Earlier I would go for my transfusion to a hospital, but for the last 13 years I have been visiting this small transfusion centre about 45 minutes from home. It is equipped with 8 beds. There is a doctor for blood transfusion accompanied by a nurse.
We are all required to reach an hour before the actual transfusion starts. Once we settle down on our bed, the nurse visits each patient. Transfusion is a common procedure in which you receive blood through a small plastic tube inserted into one of your blood vessels. Each time, the nurse has to identify a different vein to put the needle. It could be the veins of the hands or legs. Frequent use of a vein in one spot could lead to a collapsed vein. You can keep your veins in good shape if you let them heal before you use them again. I have had instances where the nurse has found a vein in my thumb. A splinter had to be attached to my hand to prevent the needle from coming out.
Sometimes, the nurse is not able to locate a suitable spot and the patient has to be pricked several times. That becomes painful. On such occasions, we try and speak and comfort the person. We help them relax and narrate some of our difficult times.
Activities during transfusion
The best way to handle transfusion is to try and keep yourself busy. You involve yourself with various activities to help you pass your time and keep your mind engaged. If your mind is occupied, you also experience less nausea and pain.
My transfusion centre is very basic. Although they have installed a TV for patients, nobody watches it. Most of the time, I put on my ear plugs and listen to music. It calms me down and helps me relax. Sometimes I watch Amazon Prime. I like to watch comedy, romantic or action films. I have watched the film Uri several times. I have binge watched Castle and Suits. Or, if I am tired, I just catch up on my sleep.
I see other patients also trying to keep themselves busy with music and videos. There will be one or two among them who are occupied with their laptops trying to finish office work. Occasionally, I see students studying. If they have an exam on a Monday, they would be studying through their transfusion on Saturday.
Once in a while, you’ll come across patients getting together to play cards. They join their beds and play easy card games with one hand. I remember, as a kid I used to play a lot of Uno.
Sometimes we party at the transfusion centre. I don’t mean conventional parties with music and movement. Ours is very sedentary and bound to the bed. Our parties involve ordering food, essentially dry, trouble-free food like pizza, burgher, sandwiches from outside. I know they are not the healthiest, but they are convenience food, especially in times of transfusion. You don’t need any cutlery, you can pick up a pizza slice or a burger with one hand, while the other hand is being used for transfusion. It also keeps our mood peppy and positive. Or, if somebody has brought snacks from home like chocolates and chips we all share and eat and feel good.
Since many of us meet at the transfusion centre every fortnight, we have developed a deep bond with each other. They are like family. We have created our own little world at the centre, where we talk, discuss issues and share our joys and sorrows.
I also try and follow up on my official e-mails to the government and other concerned authorities. Since I am the president of the Thalassemia and Sickle Society in Bangalore, I have to keep liaisoning with the government for the welfare of Thalassemia patients in terms of medicines, treatments, discounts, benefits and awareness.
Ignorance about thalassemia
There is great degree of ignorance and stigma about thalassemia in society even today. Many people still believe that thalassemia is contagious, that it can be contracted by sharing food or sitting next to them. People with thalassemia find it difficult to find jobs or get married.
I had got a proposal, but the moment they learnt I had thalassemia they backed out. I heard the father loudly warning his family, “Will he take care of himself or will he take care of my daughter?”
It is very unfortunate. But the truth is that a person with thalassemia can lead a normal, active life. I know of people with thalassemia who have become grandfathers and are today cherishing their time with their grandkids.
