Komal Pawar Godase, 29 shares her journey from a sudden diagnosis of end stage heart condition to the innumberable hospitalisations, the struggles of a dual organ transplant and her recovery after the transplant.
While the whole world is in a mask now, I have been wearing one for 3 years. I also spend most of my days indoors at home with no visitors unless absolutely required. When the current pandemic started, it was no different. Home quarantine became stricter and I was put on extra meds for protection. However, nothing will be the way it used to. I was a teacher at an Engineering college, when things went haywire. In class one day, I suddenly started vomiting blood and was taken to the nearby hospital in Satara. After numerous tests, they told me I had a condition called Primary Pulmonary Hypertension, with no known cause.
It seemed unreal. Here I was 25, newly married, working, winning local beauty pageants and living happily. The past 6 months, I had some weakness and panting but that had been dismissed as anemia. The doctor sitting in front of us told us that there were no medicines for this rare condition. Since it was found at the end-stage, there was no cure or treatment. I was referred to Ruby Hall hospital in Pune, where I was put on oxygen. However, my breathing became more problematic and I started losing weight. Soon, I was bed-ridden as I was unable to walk. I came back to Mumbai and was moved from hospital to hospital, but all the doctors said the same thing. We found out that Narayan hospital in Bangalore had done some heart transplants, so we packed our bags and went there. There we were told that heart transplant was possible, but they had no lung transplant specialist. By this time, my weight loss was significant, and my organs were struggling. My oxygen levels would fluctuate violently and my need for oxygen had gone up drastically. I was put on mechanical ventilation a few times and was constantly in and out of hospitals.
Slowly my body was deteriorating. My weight was down to 20 kilos; I could not move my arms or go to the bathroom. I even attempted suicide by removing my oxygen. My in-laws being very positive, motivated me to come out of my depression. My husband would take me for drives in the car to lift my spirits. My doctor and his team would try to counsel me since they knew that patients like me often went into depression. Since I was a working person, it was very difficult to get over it. Initially I thought, I would continue teaching even if I had to drag my O2 cylinder around, but when my lungs totally collapsed, I had no choice but to quit.
That year and a half after my diagnosis were the hardest! My husband would meet with a new Pulmonologist almost everyday to seek a new opinion. One Pulmonologist from Global hospital in Chennai, Dr Vijil suggested lung transplant. An air ambulance transported me to his hospital. On reaching there, we found out that it was too late as my heart has also failed. I now had multiorgan failure. I needed 10-11 liters of oxygen per day and became critical. I had stopped responding and my husband was told, I had a few days left. At that time, Dr Sandeep came to see me and took up my case. He said, “let’s change both the organs” and spoke to my family. My husband consented. Dr Sandeep prepped the entire team and pre-workup commenced. Psychological and surgical counselling was done. I looked around me and saw that everybody was doing so much, so I convinced myself to get on board. I knew there was a possibility that I would not come out of this surgery but I tried to be positive. Dr Sandeep and his team were very devoted and positive. I was in and out of the ICU and blank about all the background prep going on.
It was a 50 lakh rupee surgery. My family did crowd funding and we got a very good response in my home state of Maharashtra. Within 15 days, we were able to gather the full amount and it became a special case for medicine. In Tamil Nadu, I was placed on high alert as a special case on the organ registry. On 27th May 2017, a donor became available with all 3 organs that matched. Under the green corridor, the organs were harvested and air ambulanced to me. The next day, I was wheeled into surgery.
After 16 hours in the OR, success of the surgery was announced. I had no clue as I was unconscious for 7 days. When they woke me up , they asked me to breathe on my own. It was unbelievable and such a relief that my new organs were working. For the next 4 months, intense rehabilitation and recovery were on. My organs were working but I was far from recovery. I had no energy and low body weight was an issue. I had numerable stitches which were very painful. Due to all the tubes in my throat, I had lost my voice and appetite.
Both pulmonary and cardiovascular rehabilitation were scheduled daily. Physiotherapy was also included. 3-4 times a day, I would have some rehab or the other. In the beginning, my legs wouldn’t straighten out for me to walk and I needed a lot of assistance.
Initially I had a feeding tube so was on a liquid diet. After a month, when the tube was removed, I started feeding orally with soft foods. I was on a high protein diet and steroids which helped me gain weight and progress with recovery.
My biggest supporter has been my husband. I lost my mother a while ago but my husband has played the role of my mother/father/friend and companion. Pre and post my transplant, he solely has taken care of me in the hospital for almost 6 months. We weren’t allowed any visitors at that time, not even my in-laws or friends.
Upon discharge, we flew back to Mumbai and I was put on isolation for a year. No guests were allowed to see me in person. Since mine was a highly publicized case, many doctors would come to see me. My family would meet with them but no one was allowed to see me. A year later, I was allowed to step out but with several precautions such as always with a mask, no crowded places, no contact with children or ill- patients etc. I started going to the Gym in my building and slowly meeting close family and friends but always with a mask on.
Regular follow-ups continue for me on a daily basis. I have to do weekly chest X-rays and blood tests and submit those reports. If I have any symptoms, I contact my team right away via WhatsApp. I have been through two bouts of organ rejection and am on 2 different types of immunosuppressants. That amounts to almost 20 pills a day. When COVID came around, gymming and going out came to a complete halt again.
I spend my days counselling patients from all over the country and even Pakistan. After I recovered, I started a foundation 3 years ago. I had read up a lot on organ donation and transplants and with my experience wanted to help other patients. My lectures and Ted Talks received a huge response and motivated me further. The focus of this foundation will be awareness, counselling and providing resources and support to transplant patients.
Foundation link: https://facebook.com/komalnewlifefoundation/
With deep regret we wish to inform our readers that Komal passed away on 2nd Sep 2020 just a couple of weeks after she shared her experience. This piece was published on 13th Aug 2020. She will always be remembered for her spirit and her passion for the cause of organ transplantation.
