Dear Friends,
Patients can be great teachers to us as they bring their unique point of view which helps us to understand their concerns better.
What have patients always wanted?
To feel listened to, to feel included and informed and to be reassured that their decisions and preferences shall be respected.
This new year, we honor our patients and their carers, by introducing a new section to KWay – “Narrative Medicine: Diseases and their Impact on Lives” from the point of view of patients and their carers. We publish here the remarkable story “My Second Coming” by Shanthini Susindar. We request to encourage your patients to tell such stories to us.
My Second Coming
Hi. I am happy to share with you all ‘my second coming’, coming back to life, after going through hell and high water to find an effective solution which got me ticking again. I am an elementary school teacher who was working at The School, KFI, Adyar. I was normal and my usual self as a school teacher, happy, going to work, family, etc.
In April 2017, we decided to visit my elder daughter studying at Texas. Excepting that I got tired easily during the trip, my health was good. I presumed that this was due to my hectic schedule. Mid-May 2017 we were back and I started going to the school, after they reopened in July.
Later, in July 2017, during the Upanayana of my nephew, I observed that I was getting exhausted. Suddenly my fingers started itching. The rash-like itch would appear on any part of my body but would disappear after a while. I used to feel itchy and used to scratch until it stopped. Initially, it appeared to be a benign itch and I used to feel that the arboreal atmosphere of The School could have contributed to this through some insects from the trees, etc. But it was not so. These flashes of itchiness happened day after day.
Since I was diabetic, we thought that this itchy skin must be something to do with ‘excess glucose in the blood’. We felt that I should check my sugar levels and the answer could lie in there. Third week of July 2017, I got my sugar tested with our family diabetologist. To my surprise, my sugar levels were normal. But he just felt that something could be wrong with my liver. But, we could hardly relate it to any abnormality with my liver as I didn’t have any external manifestation or symptom. So, we ignored the call (a mistake to avoid when we feel we are healthy otherwise). The problem was getting worse by August and I consulted a couple of dermatologists. As there was nothing serious I was on Allegra to control the itch. It made me feel drowsy. My husband used to come to my school to pick me up in the evenings as he observed that I was getting exhausted. I was known for my smile in the school. But the other teachers noticed that this smile was not appearing as often.
Subsequently, mid-August, we met our family physician at Kauvery, where we get our regular annual health check done. On her recommendation, my blood profile was tested. All parameters were near normal but the platelet count was down at 80,000 as against 1,50,000 – the minimum required. But, as everything else was normal, we recalled the advice of a cardiologist on an earlier occasion that the platelet count could go up or down in a woman during various cycles. (Another mistake – our health parameters change from time to time. So, there’s no hard and fast observation.) But this was not to be.
Early in September, there was a ‘turning point’, a call from our family physician almost at midnight, to check if the platelet count has been coming down in successive tests. When my husband checked the records, she was right. The platelet count had come down historically from 1,50,000 + to 1,25,000 and less than 90,000 in about three years. We felt that something was seriously wrong and the doctor recommended two actions – one to meet a haematologist and another to meet a gastroenterologist.
Under her directions, first we met a seasoned haematologist with decades of experience. Over 20 tests were done as recommended by him – from cancer to pneumonia and various other infections which could affect the blood. His inference was that everything regarding the blood was clear and he felt that it is better to meet a gastro. We shared this with our family physician and she advised an abdomen ultrasound scan which showed splenomegaly (enlargement of the spleen) though my liver appeared normal. With the report, I met a gastroenterologist at Kauvery. A week later, as prescribed by him I had a liver function test (LFT) done. We found that the bilirubin level was at 2.8 which is supposed be at 0.50 level.
Just a week ahead of Deepavali the gastroenterologist confirmed that I am suffering from liver cirrhosis, though in its early stages. For his part, the doctor wanted to find out what was happening, since I don’t consume alcohol and this didn’t seem hereditary. It turned out to be NASH – non alcoholic cause. However, he added that there was no need for immediate hospitalisation and asked us to watch out for symptoms such as vomiting or motion not being normal. On the day of Diwali in October 2017, I had a bout of vomiting and diarrhoea. The doctor wanted to do an endoscopy and diagnosed that there was an inflammation of the intestine. This vomiting was therefore not related to my liver. However, his prognosis continued and I was put on some medication to check if my liver was responding. This took about two months and interim checks conducted showed that there was volatility in bilirubin count from 2.7 to 3.8.
For the first time, we broke the news to my in-laws. By end of 2018, we wanted to check with a urologist from our native place who knew the senior members of our family. Based on his advice, we met a seasoned gastroenterologist. He did a fibro scan and felt that the cirrhosis has advanced, impacting 30% of my liver but maintained that it was curable. On his advice, I was put on bland food – no oil, no spice and no salt. I stopped eating outside food and I didn’t even colour my hair since someone along the way spooked me away from the chemical treatments. But the food regimen was quite tough though my husband dutifully prepared an excel sheet on what I could take to reduce this ordeal and tackle the urge to taste something different. The gastroenterologist began the process of elimination and advised a series of tests like Wilson’s disease, copper in blood and again a test for cancer, etc. He also advised a liver biopsy. But, we were not ready as the procedure is invasive. I began to lose weight quite dramatically and my skin started darkening. I was following my daily work routine. I was on medications, a stricter diet. At some point, during our many tests, we found that the bilirubin was again volatile and the liver was not responding to medicines. Bilirubin kept moving upward from 4.5 to 8.00 levels.
While these tests were being done, we prayed that the reports should show the cause and help us effectively control the disease with drugs and nothing major should happen. The message was that we need to take the path ahead step by step and undergo the stress it offered. We used to break down at home in the evenings after the tests. But my husband always stayed positive and reassured me that we will be back to happy days soon. We used to play devotional music in the evenings to bolster my strength and provide us the much-needed divine blessings to go through this and find a solution soon. My younger daughter at home, who is also a student of classical dance, was my only source of break from this torture of time. She would do everything with my husband to take care of the house.
In the meanwhile, we were allowed to take a few days off by the doctor to go to some place where things could give us some respite. After a lot of deliberation, we located a resort in Wythiri in Kerala, a place to which my younger daughter had gone along with her friends during her final year of college in 2017. We stayed there for three days and four nights. This was really a good break though I had to be thoroughly in control of what I ate. One mistake of taking a cheese snack caused problem overnight at the resort. But, we understood the cause and continued to stay.
Further, there was no respite and no amount of medications were helpful. We decided to have another meeting with the gastro in mid-June 2018. We were directed to meet another haematologist. He conducted the bone marrow test, suspecting mastocytosis and the latest panel test for auto immune deficiency. Both tests showed negative results. Till this stage, physically I was active, normal and there were no external manifestations of the disease but for losing weight and turn of skin colour.
On 26th July 2018, I suffered another attack of vomiting and diarrhoea after eating a bad mango and got admitted in a hospital for a saline drip session. I got discharged the next day 27th July morning.
May be due to maladministration of the saline drip, my face and body bloated. We took our family physician’s guidance again, as I am also a cardiac patient with mitral valve stenosis. We met a cardiologist. He ran a quick echo and told me that my heart is safe. He understood that I have a serious liver problem and advised Lasilactone or Lasix to drain the fluid from my body. While doing so, he cued that we should meet a liver specialist. Till now, we never heard that there are liver specialists. They are hepatologists.
By now, my MELD score reached 15 which is indicative of the disease going out of control through medication. Our gastroenterologist referred us to a hepatologist. We met him in the first week of August 2018. He went through all my annual health records from 2007 till the last test done in 2018. He figured out that the disease had set in much earlier from the days I developed a fatty liver almost a decade ago. This is when I remembered that during the year 2016, I used to have stomach ache and pain in the ribs. Since the pain would stay for a couple of hours and disappear, I did not pay much attention to it. But it was persistent and when we met a gastro, he had mentioned that I may have to undergo an endoscopy if the symptoms persist. But nothing happened after that. I am mentioning this here because the disease is so deceptive that if we don’t see beneath the layer, it would remain difficult to detect.
The hepatologist stopped all medicines and just wanted me to focus on improving my protein intake and subscribed some protein supplements like Hepsure and Hepavit. These two kept me going. We continued to do the LFT and RFT to monitor the organs – liver and kidney. After four months, even after the bilirubin showing signs of relenting now and then, the MELD score rose above 15. As we were worried about undergoing a transplant, the hepatologist gave us a long rope till the end of 2018. Even then, we were not comfortable with the thought of a transplant and did not want to go in for one. I thought I could keep this at bay with proper medication and diet.
I need to add something here. Every time a test was prescribed, or we heard a new disease, we would read up a lot of information online. This was good in some ways but bad in many ways because we feared the worst always. Unfortunately, all our search for information never went beyond what we heard or read in some test and we could never even find the term ‘hepatology’. The learning point is that an internet search on medicine is necessary to some extent for reassurance but can take you only up to a point.
It so happened on the 1st of January, my husband wanted to greet his friend who’s a cardiovascular surgeon in Britain. During a casual chat, my husband mentioned the status of my health. He was a bit furious and asked us to meet a liver transplant surgeon. This was another turning point in my journey. Again, we took the help of our family physician at Kauvery and were fortunate enough to get an early appointment in January 2019.
He and his team of doctors confirmed that a liver transplant was the only option, after conducting a mandatory CT scan and a few blood tests. This was a liver speciality hospital which gave us comfort and removed our worries over transplant. They educated us adequately on the process of cadaver transplant and how there is a Government body called TRANSTAN which is regulating the availability of the organ. It is necessary to undergo many tests to prepare for the transplant. A single infection in any part of my body, even my eyes or teeth could jeopardise the entire transplant procedure. The nature of the liver is such that it is part of my immune system and a deteriorating liver meant a deteriorating immune system. We took a detailed and comprehensive check-up of the body and all its functions. It was during one of the consultations that the hepatologist pointed out that I looked obese in a photo taken 4 years ago and that it was a clear sign of liver disease.
Since my blood group B- is a rare one, we had to wait for a longer period of time. We were also advised to cancel and rebook in other zones like Coimbatore, Trichy or Madurai as the availability of organ is better in these areas. We followed their advice. Despite making several attempts to impress upon the urgency to the Tamil Nadu organ transplant body, TRANSTAN, we always got the reply check with your hospital where you had registered. We used all our influence from high offices in the Govt. to relatives who know people. Everyone was willing to help us and did something or the other, but nothing worked out though it would give us some hope time and again.
I was put on the Cadaver Transplant Process in January 2019, after my evaluation since none of my immediate family members could donate a part of their liver. There are many specifications like age, non-alcoholic, age group of 18 to 45, etc. for a cadaver and must be a relative for a donor. While waiting on the list, I started collecting abdominal fluid or ascites. I couldn’t lie down to sleep and had difficulty in breathing. The fluid was removed by a radiology procedure called tapping. My body was prone to ascites so I was periodically visiting the hospital to remove the accumulated fluid.
By mid-May 2019, I had another severe condition of infection of ascites which can infect other organs in the body and it is fatal. The hepatologist confirmed that my liver had deteriorated, it was beyond repair and I would need a transplant in the next fortnight. By now my skin turned a little yellow in colour. The tests showed that my bilirubin had shot up drastically and my MELD score (Model for End-Stage Liver Disease) was at 17.5, away from the 15 point threshold. June of 2019, a fit of infection attacked again when I was trembling with pain and was unable to breathe. I was hospitalized for a couple of weeks while my family began a harder search for a donor within my family.
When my donor finally came forward, he had to undergo a similar comprehensive body evaluation of the donor. While my family were completing the legal requirements for a transplant surgery, both the families of the donor and mine were put through a counselling session on what exactly would happen during the transplant, the chances of recovery and even about what could go wrong. After serious consideration, we fixed a date for the liver transplant.
Finally, by the 16th of July 2019, the liver transplant was done successfully. I had developed serious complications after the transplant due to fluid overload. However, with all the support of my immediate family, doctors and the medical staff at the Liver Transplant Hospital and the goodwill and support of other friends, relatives and parents of my school children, both the donor and I made it out of the surgery without any complications. Dr Kavita was continuously monitoring my condition and even visited one of the counselling sessions. We are indebted to her and Kauvery Hospital for standing by us at the time of need.
Today, I am back to normal – able to eat all kinds of food, do household work and I am fit for travel, though, I am not, due to the pandemic.
Shanthini Susindar
