Patient Stories

1. Sheer Willpower

This is the story of a gentleman who is almost 75 years old at present. About 26 years ago, in 1990, when he was 46, he accompanied his friend to a cardiologist. At the doctor’s office he himself felt a sudden, severe burning sensation in his chest and requested the cardiologist to assess him as well. The cardiologist did not give much importance to his complaint, however, he did do an ECG which he declared as normal and suggested that the patient’s symptoms were due to hyper acidity. Over the next few days this gentleman had suffered such severe burning pain in the chest, that he found it difficult to lie down and sleep. He was not able to attend his office as well, which was unusual for a man known to work through episodes of fever, bank holidays and festivals.

A couple of doctors were called home for a visit and all of them prescribed different antacids and analgesics. His son, who had just completed his first year in medicine, rushed back and convinced him to undergo an Endoscopy to rule out an ulcer, since all the doctors were unanimous in their opinion on hyper acidity. The gastroenterologist at the hospital was not so sure of the provisional diagnosis and he repeated an ECG, which showed evidence of a massive heart attack. So what this man had survived was not an episode of severe indigestion but a heart attack, and that too at such a young age! He was dumbfounded: he was a teetotaller, did not smoke, was not diabetic, did not have high blood pressure and had tested for normal cholesterol levels.

The cardiologist who was summoned confirmed the diagnosis and then started the appropriate medicine. A 2 D Echo done showed that the pumping of the heart
(the ejection fraction) was down to 35 %, a CA (Coronary Angiogram) showed evidence of a triple vessel disease, but considering his relatively young age, he was advised medical treatment for the time being, with an understanding that he may require a cardiopulmonary bypass surgery over time. Medications were prescribed and he was advised, daily walks, weight reduction and meditation. He diligently continued his medications and daily walks regularly for the next 5 years by which time he began to experience a heaviness in his chest and breathlessness during his morning walk.

A repeat Angiogram showed blockages in almost all his major arteries, and he was advised a cardio-pulmonary bypass. Now, a bypass these days is not as frightening a thought as it was then. He had much to live for: his elder son had just completed MBBS and his younger son was still studying. The bypass was performed in Chennai and he flew back from Chennai on the 9th day after his surgery. He was all right, till 2000, when he again complained of similar symptoms as in the past. A repeat Angiogram was done, which showed   re-blockages in his arteries as well as fresh blockages in other arteries. This time, a triple angioplasty was done.

He was OK thereafter for barely a few months when, in March 2001, a repeat Angiography showed that all stents were blocked. Once again a repeat angioplasty was done in the largest artery and a beta radiation was done in the stent to prevent a re-blockage. He remained stable for 6 months after which he started experiencing minor symptoms again.
On 16th October 2001 he had his breakfast and left for office but shortly started experiencing severe chest pain. He called his son, who by now had finished his post-graduation in medicine and was working in the ICU. Barely did he reach the hospital’s emergency room that he suffered a cardiac arrest. His eyes rolled up his mouth began to froth and his
heart beat became irregular. His son gave him a huge thump on the chest followed by a shock to revive him and he came back to his senses.

It was now decided that no more interventions were possible and he was kept on medical treatment again with a markedly restricted life style. His son moved in with him to enable regular monitoring. In April 2002, while his son and daughter in law were just leaving to go out for an evening with a friend, he coughed and his son noticed that this particular cough sounded different to his son. Drinking water only worsened his cough and he then began to bring up pink sputum which, to any physician, is a danger sign. He was rushed to the hospital through the evening hour traffic barely making it to the emergency room where he collapsed with breathlessness and fluid in his lungs due to a cardiac failure.
He was now told that he would need to stop working and be home bound but this was not acceptable to him. For him work was worship. More than work the need to be independent was the top most priority in his mind. No matter how long one lives he should be independent was his firm belief and he requested his son to keep him that way.
Hence a second bypass was planned…

In 2002 with a cardiac function of barely 28 – 30 %, contemplating a second bypass was a nightmare. His son’s well- wishers at the hospital warned him that he was inviting an early death for his father and that it was not a wise move. His son explained that his father was all about will power throughout his life. He would die mentally first and then physically, if ever he was confined to a bed. If the bypass was successful then he would have kept his father independent and working, and if unsuccessful then it was not to be anyway. He was admitted, but the surgery was postponed once due to electricity failure. For the next planned date, he requested the surgeon not to postpone the date as he needed to be present for his new office inauguration in 10 days. The surgeon thought he was insane. He explained that the heart was so weak that he would be very surprised if the man would be able to walk after 10 days, even if the surgery was successful. The bypass surgery was done successfully on the 28th of May 2002, and he was discharged after 6 days from the hospital. On the 10th day after his bypass, he wore a long scarf around his neck to cover the bandages on his chest, put on his best blazer and walked into his new office where he shook hands with the guests for 45 minutes. Those who knew about his surgery looked at him with the utmost surprise and admiration.

Over the years his cardiac function has deteriorated further. By now he has undergone 14 Angiograms, a triple Angioplasty, a repeat angioplasty with radiation in an artery, two bypass surgeries, one cardiac arrest, and one cardiac failure. Not to mention the three hernias, one prostrate and one hydrocele. And, just like he always did, he still works 10 hours a day, walks around like nothing ever happened, and goes around encouraging other sick people to get up and get well quickly and get to work.
That man is my father and I am privileged to be his son. He taught me, to make me a good human being, one has to stand up and face the situation and not give up.
From him, I have learnt to persevere, whatever the odds, and odds there will be, because after all that’s what life is all about.

Dr Kaushik S. Bhojani

 

2. Attitude

Mrs. ST, a 48-year-old teacher, has been under my care for the last 9 years for the treatment of her Rheumatoid Arthritis. She was my patient at Hinduja Hospital, and then she followed up with me. At Wockhardt Hospital (now called Fortis Hospital). She is one of the promptest patients I have had, she never missed an appointment neither did she postpone or delay an appointment regardless of the distance she had to travel. Travelling to her appointments meant she had to travel in the ‘reverse’ direction, during peak hours, and change trains. What was important was that she was almost never alone. Barring  a couple of appointments her husband “DT” had always accompanied her for every follow up visit. They were both educated and were always polite and came across as very humble and simple and I had come to be friendly with them.

Oddly enough I saw her after a gap of a year, something which had never happened before. Anti-rheumatic drugs require regular supervision to watch for any side effects and hence I would have been irritable with my patients for not following instructions. But knowing her well, I knew there had to be a genuine reason for this and hence asked her in my regular friendly tone and not an accusatory one. “You have always been one of my most regular patients! What happened this time? How come there has been no follow up for a year?” She said “Doctor, DT had an accident!” I was very surprised because I knew her husband had a motorcycle which he used around his suburb to do his regular shopping or drop her to school, and was a careful driver. “He is OK, isn’t he? I asked in trepidation, when she nodded yes I asked “How come? he is very careful isn’t he?”, “Doc he was not even driving! He was walking on the footpath on his way to office when a learner lost control of his motorcycle and sped onto the footpath and ran over my husband. He had a head injury, multiple fractures and in fact was unconscious. After some time, they took him to Cooper hospital (A Municipal hospital) where he regained consciousness and had the sense to call up my brother and ask him to come to the hospital.

He has been operated on four times at Bombay hospital and has been at home in bed for the last 10 months. Only now has he begun to get up and walk around the house with some support. I have been doing everything for him till now. Hence between my school job and looking after him I could not come to see you. My mistake has been that I should have informed you which I did not and I am sorry for that. But I have been taking your medicines regularly.” What she said next left me in complete shock.

She said” Doctor I am so lucky; my husband is alive. God is great!!!” I went numb on hearing this. My hair rose on end and I went cold… Here was a woman who has been suffering from rheumatoid arthritis since the past 10 years. Every morning she had to get up at 5 AM, do her housework, pack lunches for her daughters and husband and then go to school and teach for 8 hours whether her joints are painful and stiff or not. The last one year in her life had been horrible, to say the least, and here she was with a smile on her face saying that she was thankful to the good lord for whatever was positive in her life. I told her I want to talk to D. She dialled his number from her cell phone and handed it to me. “D”, I said “how are you, man?” He said “Good evening doctor” in a bright cheerful voice. “Doctor I am fine! 4 operations Doctor, but not piece of steel in my bones. No artificial joints, no rods. I am lucky doctor, God is great! I have just begun walking around the house. I will come and meet you Doctor. Next visit I will be there with her.”

I almost had tears in my eyes as I handed back the phone to ST. These are examples of true Grit. A determination to come on top, regardless of the circumstances. And more than anything else a positive outlook. The glass is just as it is… half filled. Whether you think it is half full or half empty is how you look at it.

3. Courage and Faith

I first met Miss SI, a South Indian, in the ICU in 2008. She was referred to me with severe breathlessness and “some rheumatic condition, probably vasculitis”. Her pneumonia had been treated, but her breathlessness persisted. She had chronic ulcers over her lower limbs from where fluid oozed out continuously and her ANA test was positive. That was all         I was told. I went to the ICU and found this morbidly obese lady sitting propped up in the ICU, breathing rapidly, with shallow breaths, despite being on oxygen. She had dark skin, a boy-cut peppered with white hair and large round eyes with which she was looking at me with some degree of anticipation. Despite her condition, she was courteous enough to nod her head in greeting me as I introduced myself to her.

Her papers showed that she was admitted with severe breathlessness and that her X-ray had shown pneumonia for which she had received adequate treatment in terms of antibiotics etc., despite which she continued to remain breathless. Moreover, the ulcers on her shin and feet had been present for more than a year and were not healing with all conventional modes of treatment given so far. Hence the treating physician had suspected “Vasculitis” a rheumatic condition where the blood vessels get inflamed and cause painful ulcers. She did have painful dirty looking ulcers alright but there was nothing else to suggest the vasculitis. Her legs were tremendously swollen and pressing the shin with the thumb left a deep depression on the leg. These were signs of excess fluid in the legs and the fluid that oozed out was not exactly pus but rather pale fluid almost watery in colour.
The large shadows seen on Chest X rays on admission had also disappeared but her lungs looked congested and the size of her heart seemed to have increased and I realized
“God! She was in cardiac failure!”

I ordered for an echocardiogram and started her on diuretics (medicines to make her pass more urine). Her weight was a 109 kg on admission. I told her that almost 15 kg if not more of this weight was due to excess fluid in her body which I would help her lose but she would need to lose much more if she wanted to live. Once she was less breathless, this south Indian who spoke excellent Hindi with a north Indian Accent gave me her past medical history. She had become darker over time the skin on her hands and legs had become thicker. Her fingers would turn pale at times and she had a few ulcers over her fingertips intermittently, all symptoms indicative of “Scleroderma”.

She had been gaining weight progressively and had developed breathlessness on exertion over the last 1 -2 years. The swelling over her legs had been there for more than a year now and somewhere along the way the skin on her had started legs ruptured, specifically from where fluid continued to ooze incessantly. Everyone said that her excessive weight was the root cause of her misery. In essence, what had happened was that, she had developed severe pulmonary hypertension due to her scleroderma, resulting in right sided heart failure and hence fluid accumulation which had somehow been missed completely.

Over the next few days in hospital she kept losing fluids under my supervision, her breathlessness began to reduce proportionately as she lost more and more fluid and the legs started looking less swollen. By the time she was better and ready to be discharged I got her to stand on the weighing scale and it showed 89 kg. She wept on her sister’s shoulder with joy. Of course, the ulcers healed on their own, once the swelling in the legs had subsided.

She kept following up regularly, following all my instructions to the “T” the kind of ideal patient, we Doctors dream of. She went on a strict diet did breathing exercises and of course medications were always taken on time. Over the next one year she lost 30 kg and came down to 59 kg. I don’t know of any patient who has lost so much weight in one year without undergoing bariatric surgery that is gaining popularity these days. I asked her how in the world she managed to do that. She looked at me with her large round eyes, smiled and replied “Doc, you will know of many people who have stopped eating sugar and fried foods to lose weight. Have you ever tried giving up salt?”

Over the next 4 years SI became the acid test of my knowledge…There was a new complication each time. After a year of treatment her pulmonary artery pressure had reduced from 86 to 69 mm Hg and yet her symptoms of fatigue and dullness seemed to have increased. I realized that her fatigue at least in part was due to “Obstructive sleep Apnea” a condition where there is lack of oxygenation to the brain and the body because of obstruction to the airways while asleep. She had a short neck and a small nose and a history of snoring.
Hence she was put on a CPAP machine to be used at night to help her breathe normally. She did improve for a short while by which time the pulmonary artery pressure increased again so her symptoms of fatigue and breathlessness on exertion also increased again.

A right heart catheterization was done which showed that medication would only help a little, as far as her pulmonary hypertension was concerned and it was clear that her right heart would always be a bane for us. A few months later she had numbness in her legs at rest and walking became painful. Sleeping at night in bed would cause severe burning pains and she would sleep in a chair keeping her legs in a hanging position which was helpful. This was a sign that the blood circulation in the legs was affected and a colour Doppler confirmed this. She was started on blood thinning medications. These medications needed regular check-ups, to determine the extent of thinning of the blood by means of a test called the INR. Possibly, the one and only time in her life that, she slipped up following instructions was when she did not check her blood for about 4 weeks. It had just slipped her mind. When she did check it was dangerously thin and she called me in a panic, and we stopped the medications for a while, but the damage had been done by then.

She began to complain of headaches which were dull initially but in a few days they became exceedingly severe. Finally, she began vomiting and started to experience a blurring in her vision and was rushed to the casualty by her family where an urgent CT scan showed brain haemorrhage. An emergency surgery was carried out by the neurosurgeon whilst in an awake condition because anaesthesia considering the condition of her heart and lungs was not an option. The surgeon asked her while operating how she was feeling and whether there were any problems to which she replied “I am OK but I feel as if some carpenters on the floor above me are banging away heavily”. Overtime the pulmonary hypertension became so severe, that she would be tired and breathless even at the mildest exertion.

Travelling became a rarity as the exertion was too much for her. She became almost housebound and her outings were restricted mainly to my office. Then, came the gangrene in the right thumb. At the base of the gangrenous thumb was evidence of infection with some clearly visible pus.

She went to the plastic surgeon who advised amputation as he was worried that the gangrene would spread. She came to me in panic saying that the only thing she could do comfortably nowadays was write and type which would become very difficult if the right thumb was amputated. We then did something very unconventional…It was a chance and not based on any medicinal. We used a sterile needle to remove the pus and then gave her higher antibiotics and asked her to follow up every 4 days. The deal was that, we would review her every 3 days to see if it stopped progressing and began to show healing. But any further signs of spreading we would get her operated immediately. God took mercy on her and the gangrene stopped spreading and became dry, the thumb tip shrivelled and the majority of the stump was preserved.

Every time there was a complication she would rush over. She would look straight into my eyes for any signs of defeat and once reassured by me that we can fight, she never gave up. I don’t know whether I inspired her to keep fighting or whether it was her faith that was my propelling force to try harder and come up with a solution each time. I guess it was a little of both. Our relationship had become more like that of friends rather than patient and Doctor. In January 2012, she was admitted in an emergency with cardiac failure and I was now at a loss of what to do. She was already on the best combination of medications available and in the highest recommended doses for pulmonary hypertension.

As a last ditch effort, I called in the cardiologist and asked him to do an “Atrial septostomy” which has been described as an option when all else has failed. Here we create a hole in the wall of the heart to equalize the pressures when the pressure on one side has become extremely high and thus dangerous to the life of the patient. I had asked the cardiologist to do this procedure on one similar patient recently and this was the second referral in 2 months. The cardiologist said that prior to this, the last such procedure he had done was 12 years ago!
Her entire family was very well-educated and understood that what I was doing was not commonly done. They had just one question “What are the risks to her life?” But she had no questions to ask me. As far as she was concerned, if I said so then she would go with it. The procedure was uneventful and once again, after her umpteenth hospitalization, she went home. We had a standing joke between us that the hospital should give her a “privileged customer status” with a loyalty bonus and discounts given the number of times she had been admitted here. Later she developed severe anaemia due to iron deficiency. This had happened twice earlier as well when I had treated her with intravenous iron. Investigations showed that she was losing blood in her stools. I was intrigued. What now? An endoscopy done of the large intestines (Colonoscopy) showed multiple red spots of dilated capillaries called telangiectasia and these seemed to be the source of the gradual oozing of blood. So we coagulated those in a second sitting again without any anaesthesia or sedation and she went through that pain too without complaining.

In August 2012 she had a stubborn infection in her toe. It simply refused to heal and there came a time when the bandage would get soaked within a few hours, and she was changing the bandages 4 times a day. Dirty greenish pus dripped from her leg. I admitted her again and an MRI revealed that the infection had reached up to the bone.
Surgery was not an option and antibiotics for 6 weeks that too intravenously three times a day seemed to be the only way forward. Her veins were bad and getting an intravenous access through the thick scleroderma skin every 2 days was impossible. Hence it was decided to insert a neck line which is often done in patients requiring prolonged antibiotics or fluids in hospital. What none of us was prepared for was the fact that the pressure on the right side of the heart was very high and after the atrial septostomy the pressures on both side of the heart were equalized. She could not sustain the procedure and eventually we lost her.

Being her rheumatologist, I knew that there would come one day when I would lose the battle given the severity of her illness but not so suddenly. Facing a crisis with her and then coming up with some kind of a solution to ward off the danger had almost become a habit. I have asked her this question jokingly more than once “How can SI not keep me on my toes? I solve one problem and you give me another!” She taught me more about scleroderma than any text book would teach me. More than that, she taught me the meaning of courage and the power of faith. Only once, near the end, have I seen her break down with tears, when she felt that her family had to go through so much effort for her. I put my arm around her shoulder and asked one question only “How can you give up S? I give your example to so many of my patients who are depressed!” And again she was up and ready to fight.

Her family is still in touch with me. I see a bit of her pluck and courage in her brother and her sister in law every time I see them. Now I miss those problems that she gave me to solve. I miss seeing her eyes with that unquestioning faith and expectation of help. We Doctors are humans too! For all the doubts that patients have and second opinions that patients seek, one such patient with blind faith in us makes our entire effort worthwhile and we want to go beyond our call of duty and do everything in our power.
I miss her… My patient … My friend.