Lt. Col. Sandhya V. Nair (Retd.) Transplant Manager Batra Hospital New Delhi. “Behind the clouds the sun is still shining”
I have always loved this quote, but never thought that there would be a great coincidence in my life. On a warm February morning this year, Mr. Vikash, a 31-year-old end-stage renal disease (ESRD) patient visited my office for transplant counselling referred by my Head of the Department (HOD), Dr. D. Mukherjee. Though it appeared to be a routine transplant in the beginning, it turned to be a challenging one that tested my perseverance to a great extent.
Mr. Vikash was on maintenance haemodialysis with irregular compliance. He was accompanied by his brother-in-law during his hospital visits. After a couple of sessions, he decided to undergo the transplant procedure and his mother volunteered herself to be a donor. He had already lost his job to his illness and the entire household and his medical expenses were shouldered by his mother who was a housemaid. It was undoubtedly a huge burden on her to be a donor as well as to manage the transplant expenses. The family had only Rs. 60,000 in hand.We decided to apply for financial grants from the state and central governments. Personally, I had never done that in the past for any of our transplant recipients; hence I had to do some homework to explore the opportunities and procedures. Efforts were made to apply for Prime Minister’s Citizen Assistance and Relief in Emergency Situations Fund (PM CARES Fund). Simultaneously, we also reached out to a crowdfunding platform ‘Milaap’. After persistent follow-up PM CARES Fund came through; however, there was no positive response from the crowdfunding platform, but whatever came was a blessing.
So all was set and we gave him a tentative date, 24th March 2020 for transplant. The first surprise came, the announcement of lockdown on 21st March because of COVID-19 pandemic with all elective transplants getting suspended. He was disheartened not because the transplant date was extended, but the financial implications of more dialysis had him worried. We consoled and counselled him to be patient, that as soon as the situation was favourable he would be taken up for surgery. Until then he was to take necessary protection to safeguard himself from the deadly virus. Things went OK and we evaluated him in May 2020 and posted him for transplant as he was quite exhausted physically and financially with his dialysis. His transplant was fixed for June 8th as per the guidelines of the National Organ and Tissue Transplant Organisation (NOTTO). But it came as a huge blow to all of us when the lab announced that Vikash had tested COVID positive. It took few minutes for me to come to terms with the results. I informed my HOD, there was a moment of disbelief and despair in him too. We hadn’t handled such situations till date but my HOD took control of the situation and told everyone not to panic, the first step was to counsel the patient and family regarding the result. I was told to do the job, to break the news as I was the one who was most connected with them. Wearing a PPE, a lot of turmoil was in my mind…it was not like counselling a family whose relative was brainstem dead where you are convinced about the definitive outcome…here what do you say to them, about a deadly virus whose course of disease can’t be predicted. Moreover, how to cope with this crisis where you aren’t sure about the future? Still I took a deep breath, being a counsellor and transplant coordinator, I was taught by my mentors to never give up, I approached the family and Vikash separately.
In a very composed tone, I broke the bad news of his test report, I was frank but compassionate; avoided euphemisms. I waited for the silence and tears to come. It took an hour to give him the strength to accept it. Then there were a series of questions to answer - what about my hospital expenses, my transplant, how will the dialysis happen, the isolation etc. We patiently answered each and every question. Luckily, he had home isolation facilities. Since he was asymptomatic, we tried for home isolation to avoid the burden of hospital expenses. But there were hurdles to meet, how do we organise dialysis as out-patient department (OPD) basis? But where there is a will there is a way. My HOD was firm and then there was a team to support him at every corner. We created a pathway for such patients to be dialysed on OPD basis with a separate room and a separate machine, dialysis nurse and technician. Everything was fine but the cost of dialysis and PPE was too much for Vikash to handle. We wrote to the management to waive his dialysis cost on extreme compassionate grounds. Things went OK on the first day, but subsequently he started becoming symptomatic with flu like symptoms, severe body pain, diarrhoea. He was in severe mental agony, thinking about his fate, cursing it, social stigma isolation syndrome, and fear. There were temper tantrums that had to be handled. Medical and psychological management was important. He used to call up early morning at 2 AM crying about his fate. I patiently handled his emotions, at every step assurance was given firmly that this time too shall pass, have faith in the treatment, the Almighty up above, and yourself. By the 12th day things started improving, his fever subsided, symptoms decreased, but we kept monitoring him everyday 3-4 times. On the 15th day the COVID test was repeated. It was a relief when the test result came negative. But we still continued the dialysis the similar way for two weeks and after two negative tests results we took him to the main centre.
We now needed to do the transplant at the earliest as he had limited financial support. We did a few medical tests as per international transplant criteria, did a detailed medical counseling of donor, recipient and their next of kin as per NOTTO guidelines, and it was videographed. We had our own apprehensions about the outcome of the surgery as no one had the knowledge or experience of transplant in a COVID-recovered patient. Anyway, with confidence in one another we went ahead as a team and that resulted in a successful transplant. Everything was uneventful post transplant with brisk diuresis and Mr. Vikash was discharged on the 12th day with a COVID negative report. After a month passed, he came to the OPD for follow up with normal graft function. He now speaks, laughs, and plans his future with some online business. I don’t know whether this experience has made Mr. Vikash stronger or not but these three months of experience with him has definitely made me stronger to face more challenges ahead. Each case gives you a new learning, that challenges are great opportunities in disguise and every challenge you accept opens a new door to success.
- Copyright © 2021. Published by MOHAN Foundation
- Keywords: end-stage renal disease (ESRD), Prime Minister’s Citizen Assistance and Relief in Emergency Situations Fund (PM CARES Fund), Milaap, COVID positive, social stigma isolation syndrome, transplant in a COVID-recovered patient