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Submitted by Bekxy Kuriakose on 15 September 2020

Bekxy recalls how she spent three traumatic months during the lockdown managing her husband’s life threatening gallbladder illness - acute complicated cholecystitis (gangrenous) and post operative biliary fistula and living in constant fear of testing Covid positive. She also writes about her learnings as a caregiver.

It was yet another day of WFH (work from home) for me. Concalls, emails, monitoring the markets, deep into work on the dining table in our living room. Suddenly the door opened and I saw my husband, Rohan, entering the house. He told me he was having some pain in the abdomen and had decided to visit our GP. The GP had prescribed some medicines and recommended an abdominal sonography. The sonography report mentioned a “distended gallbladder” and lot of abdominal gas.

Meanwhile the pain, which was mild initially, kept increasing in severity. I had never seen Rohan in so much pain. He kept moaning and sweating. The doctor said the only other option was to hospitalize him. This was a time when many hospitals were not functional due to the Covid pandemic.

Gallbladder disease

Somehow we managed to locate a hospital nearby which was open. The doctor there suspected Rohan to have gastric infection which had affected his gallbladder. He said if required we would consider surgery in a month or two. Due to Covid, he would give the prescription, advice, etc on WhatsApp as it would be prudent to not meet for too long. He was also following hygiene practices conscientiously though his clinic was shut for surgical procedures.

We then moved to another hospital in our area. A week had gone by. Rohan’s pain would come and go in intensity but what made matters worse was steady loss in appetite and vomiting. Rohan was becoming weaker and confined to bed. He could eat nothing and was only having fruit juice.

A CT scan done showed presence of small gallstones in the gallbladder which in itself was not so much of a concern. But the infection was worrisome. Blood test was being done everyday. Suddenly Rohan’s creatinine shot up to 6 on the third or fourth day. The normal range is 0.9 to 1.5. The surgeon could not fathom why. A senior resident doctor of the hospital said this kind of creatinine levels are seen in those whose kidneys start to fail.

Feeling alone

I had a severe anxiety attack when I heard about this creatinine shootup. That day on phone with Rohan’s sister I broke down and she tried to calm me. Neither she nor his parents could visit as visitors were not allowed in the hospital. And it wasn’t safe as well. My parents were in Kerala and my sister in Singapore. No one could fly in.

I had to also make arrangements for food. Most days Rohan had no appetite at all and refused to take anything. Even the smell of food would make him nauseous and I had to go out and eat in the waiting room or go home. Luckily home wasn’t too far.

Meanwhile, the blood test showed further rise in infection. The doctor again changed the antibiotics which we later came to know were third generation antibiotics given to ICU patients. Rohan asked doctor whether wouldn’t it be better to do surgery. Doctor warned him that there are many associated risks due to COVID situation and it won't be a laproscopy even if its done. He advised to continue to wait to see effect of antibiotics.

Rohan seemed fragile and it seemed everything depended on what course of action I would take and I felt I had to do something. I even started giving him some homeo medicines on recommendation of a homeopath who was my friend’s father.

Slight improvement

In the next few days, Rohan seemed a bit better. The doctor walked in to the room and announced we could go home. We nearly leaped up in joy. He said Rohan was fit to be discharged and rest of the treatment could be continued at home. This was even while his blood tests continued to show infection.

The first few days went off smoothly. His parents had come over from Powai. So that his Mum could cook homemade food in line with his diabetic requirements and I could join back work. Rohan had also started eating and had an appetite. He sat on the couch and watched TV with them and seemed to get his activity levels up.

Oral antibiotics were started again. After few days blood test was done which showed infection levels to be same. But then the fever started. In the hospital he had fever intermittently but they would give paracetamol in the drip and it would come down. But at home this started being a source of worry. Typically, the fever would come in the evening. And then after paracetamol was given it would drop. The intensity of the fever started increasing with temperatures touching and, even crossing, 102. As his fever rose so would my anxiety and worry.

Seeking second opinion

With the fever then came nausea which now I knew to be the side effect of the antibiotics. The evening he vomited I decided we needed to see another doctor. My friend in the housing society recommended her surgeon through whom she had done a gall bladder removal. I went to see him with all the reports next day and he remarked “Surgery should have been done in the hospital itself”. However he too started Rohan with another set of medicines saying he should improve in a week’s time.

Seeking third opinion

While the nausea subsided the fever was back. I continued to remain worried and doubts about the line of treatment plagued me particularly when my GP remarked that ultimately cholecystomy would have to be done.

A friend who I knew through an alumni Facebook group recommended gastrosurgeon Dr Sanjay Nagral. Dr Nagral said Jaslok Hospital, where he consults, has opened up to do emergency procedures. Rohan would be admitted initially as per protocol to a Covid suspect ward. He would help in arranging admission. If he tested positive, the surgery would be done under far stricter PPS protocol.

We rushed to Jaslok Hospital. Rohan was wheeled in for surgery. It was an open surgery and lapro would not have been possible even if that was an option (the hospital was not allowing laproscopic surgeries due to higher chances of infection for operating staff in such a procedure).

Rohan’s gallbladder had become gangrenous and soft filled with pus. They had drained a lot of pus. The tissues had become soft and messed up. As a result they could not find the cystic duct and close it. Delving any deeper to ligate (tie up) it would have been riskier as the duct is close to a main artery. Thus they had to fix two drains through two tubes to drain out the bile leakage. “Situation inside was worse than we thought though looking at the CT scan it was not entirely unexpected,” informed the doctor.

It had been nearly 10 days since the surgery. The bile leakage was not really coming down. While one drain had been removed, the second drain would have to be emptied 2- 3 times a day. So 300-500 ml of bile was coming out. A medicine which was injected on the stomach was tried to reduce the bile leak but they weren’t successful.

Finally, it has been decided to go ahead with an endoscopy procedure to insert stent since the bile leak was not abating. This was a general anesthesia procedure. After the endoscopy, the bile leak had reduced considerably, but not entirely come down to nil. Most other parameters were normal though he was still weak. The doctor said now there was no point of being in hospital just waiting for bile flow to come down. While we would have preferred to be discharged after removing the drain, but it seemed that was not to be so. Rohan was also getting fed up of the long hospital stay and we decided it was time to go home.

His mother would cook homemade food with daily intake of proteins of his choice like black eyed beans, paneer, chole etc as recommended by the dietician. Dinner would be a protein milkshake. Chapatis and rice minimal. Few fruits like pomegranate, orange, apples were taken. We started giving him soaked almonds as well in the morning. We did have a few pizza parties which had actually been recommended by Dr Nagral who said “eat well, don’t deprive yourself”. Besides Rohan had lost more than 10 kgs through the entire ordeal and eating what he was happy to eat would do him a world of good. Especially after having been through the hospital diet food.

With his strength gradually returning, Rohan started driving the car and going to his friend’s house for some guitar practice even though he had to be careful about carrying the drain around.

On our third follow up appointment, the doctor felt that we were finally out of danger. The quantum of bile in the liquid was low and the drain could now be removed. Finally the drain was out. Now remained the stent. The following week he underwent another endoscopy to remove the stent. Tissue was sent for biopsy as the doctor felt there was something abnormal near the food pipe. This was a source of fresh worry for us just when we thought everything was finally over.

Happy ending

Finally the biopsy test came and it was all clear. As recommended by the doctor, after three weeks a full CBC and LFT (Liver Function test) bloodwork recorded everything to be normal!! The doctor joked that Rohan’s blood test report was even better than his!!

With all pipes, tubes and stent out of the way, Rohan is happy to plunge into his music and guitar practice. I continue to WFH. The 4 of us have weekend parties when sit together eat, drink and watch movies. Life is back to being peaceful. Friends, family and cousins call us or we call them.

After nearly 88 harrowing days, our long drawn ordeal and agony was finally over.

My learnings as a Caregiver

  • There is light at the end of the tunnel. No matter how dark today looks.
  • While you may feel you are all alone in caregiving, reach out and do not hesitate to seek help from your family and friends network. Even words of comfort and knowing someone is there to listen to us does a world of good.
  • No doctor should be the first and last word on any serious illness. It’s okay to get a second and third opinion. It’s okay to ask questions of your doctor and demand clarity on treatment procedures.
  • It is not easy to find a good doctor but reach out to your network. It worked for me. Before finalizing a doctor’s suggested course of treatment, take some time to gather your thoughts and list down some questions in advance which you may want to ask your doctor
  • The ongoing COVID situation has made seeking treatment more complicated. Be it screening at entering hospitals, giving declarations, wearing mask at all times, observing distance and hand hygiene and certain procedures would demand a mandatory COVID test. It makes everything more stressful but being calm and level headed as much as possible helps.
  • Trust your intuition and gut.
  • Speak up. Don’t suffer in silence. When I was not happy with the diet food being sent for Rohan and the “I don’t care’ attitude of the dietician I escalated the issue and it immediately received attention.
  • It’s possible to WFH (Work from hospital). I never thought it would be but I found it was just a matter of getting my laptop and hooking it to a mobile hotspot. So I didn’t have to take too many leaves and the work kept me occupied whenever Rohan was resting/sleeping and not have to constantly worry about him.