TheLiverDoc
TheLiverDoc

@theliverdr

45 تغريدة 13 قراءة Sep 20, 2023
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"There is a place, but it is a long journey
If there is any hope for your jaundiced father, this place holds it"
"Where is it?" - the young man enquires
"A place called Kochi"
A son
A dying father
A terrifying battle
A terrible liver disease
From Telangana to Kerala
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Few months ago, Deepak, a middle aged man started losing appetite
As days progressed, he felt lethargic and every small work became a chore
Hailing from a small town and with a small family in Telangana, he was taken to a local doctor...
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Deepak's wife, a homemaker, looked after their family with love and motherly care
Deepak was the sole bread winner, with 2 children
His daughter started medical school on hefty fees, and the son was about to join an engineering college...
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He toiled hard for decades to save money so that his children could get an education
Their success was his dream
And he did it
He saved enough to send his daughter to med school and his son to an engineering college
The whole family, especially Deepak, lived simple
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When Deepak showed signs of illness, everyone was worried
He had never gotten seriously sick before and every little illness, he managed on his own because he did not want to spend money at the hospital
He saved every bit for his children
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The severe lethargy was followed by progressive leg swelling, weight gain
Deepak's legs began to swell like balloons
Made it difficult for him to walk
Basic tests at near hospital did not show a kidney dysfunction, but then progressively, his abdomen started to swell
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This worried the family, especially the son more, as in a few weeks he was to join the engineering college
He took his father to a doctor who looked at him carefully and ordered tests including an abdomen scan
Fluid inside the abdomen and an abnormal liver test
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Does you father drink? The doc asks the son, Vimal, casually
Yes sir, he did - but occasionally and for the last 8 months he has not touched alcohol
We will run some tests, the doc tells him
Have to find the cause for his jaundice
Deepak is admitted
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A multitude of tests later, the docs are flustered, confused
Everything from, viral infections, alcohol, other prescription medicines like overdose of paracetamol, pain killers, malaria, autoimmune liver disease - every test came back negative
And jaundice worsened
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As the jaundice progressed, so did the worsening of symptoms
Deepak became emaciated
His muscles wasted, swelling in abdomen and legs worsened
Water pills took care of the swelling, but the jaundice was relentless
We have nothing more to offer here, says the doc
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It is better if you can take him to a specialized liver center - where they can figure out better and in case he goes into liver failure, they can offer a transplant - the doc assures
But there was no time for that
Vimal had to join his college and it was time...
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... for him to deposit the fees and transfer funds
But his father was suffering from a disease that was slowly eating up their money and without a diagnosis
So they take him to one of the biggest liver centers in the country - in Chennai
The liver specialists...
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...at Chennai re-evaluate Deepak who is now visibly deeply jaundiced
His bilirubin was 35 mg/dl (normal is less than 1)
A review of all investigations and reassessment for rare causes for acute liver injury including atypical infections were negative
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In acute liver disease, when the initial exhaustive testing becomes non-contributory, the only way to understand what was happening inside the liver was...
...to ask the liver itself
A liver biopsy - it would open up Pandora's box
And Deepak undergoes a liver biopsy
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And as the results come in - from the pathologist, junior doctors, to the senior consultants, all develop palpable anxiety when the notice findings under the microscope
A terrifying liver disease, with almost 100% fatality
So rare, that no drugs really work on it
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In 1920, when people in South Africa started developing severe liver disease and died, the unlikely cause was found to be the flavored tea they were consuming
A specific flowering plant, was used in its preparation - Senecio, belonging to the daisy family
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What this plant and its chemicals, called pyrrolizidine alkaloids did to the liver was terrifying
The damaged and destroyed the small veins inside the liver leading to extensive obstruction to blood flow, resulting in loss of liver cells and halting of regeneration
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The subsequent liver disease that developed was called Hepatic veno-occlusive disease or VOD
There are many causes for VOD
It can be a complication of high-dose chemotherapy given before a bone marrow transplantation and and has been described as part of a rare...
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...hereditary disease called hepatic VOD with immunodeficiency (which results from mutations in the gene coding for a protein called SP110)
Features of hepatic veno-occlusive disease include weight gain, tender enlargement of the liver, ascites, and jaundice...
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...Diagnosis is based on recognition of the clinical manifestations and their association with a potential cause (exposure to pyrrolizidine alkaloids), together with exclusion of other causes of liver disease
Liver biopsy is often indicated, and recent data support it
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Docs now turn to Deepak and Vimal, tell them diagnosis
There was no other way
He would require a liver transplant to survive
In severe cases, the prognosis is poor with high mortality rate (up to 90%) due to multiple organ failure
Deepak was having severe disease
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The family had no money
Deepak needed continued admission and care
Vimal decided to drop a year and did not join college as planned
He used that educational fund, to continue his father's treatment
Desperate times
They go back home to think over the situation
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There was one drug available for VOD
Defibrotide - but it was expensive and a cure with this drug was not a guarantee in severe disease
Transplantation was curative and a guarantee
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His father was going to die without a liver transplant
As the jaundice increased, a friend guides Vimal
There is a place, but it is a long journey
If there is any hope for your father, this place holds it
Where is it? - the young man enquires
At place called Kochi
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When I met Vimal, his father's bilirubin level was 40 mg/dl
So high, that it would cause kidneys to shut down due to complication called bile cast nephropathy
I look at his reports, his clinical situation
It was clear
VOD was the diagnosis
It was going to kill him
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I talk to them about the same matter
A liver transplant
They had no money
The father and mother's was a love marriage
Married from different caste
Their family had no support
No one would come to their aid
And without the money, there cannot be a transplant
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Medical science is not only diagnosing and treating
It was also about caring
I could not imagine what Vimal would be going through - helpless, watching everyday, as a parent withered away right in front of his eyes
Absolutely no power to stop what was coming
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But how did a completely healthy man suddenly develop a monstrous liver disease?
The answer lay 2 weeks prior to his symptom onset
Deepak always had anxiety issues
His heart would race, his pulse would gallop
For his anxiety, he was not keen on consuming medicines
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So at behest of "friendly" advises, he met a traditional Ayurvedic healer - who performed a Nadi Pariksha or Pulse Diagnosis
& gave him herbal formulations as treatment
Nadi Pariksha is a pseudoscientific practice in Ayurveda
Deepak took the herbals for 2 weeks
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And from the 3rd week onwards, he started developing severe symptoms that resulted in the need for his liver transplant at present
Many herbs contain pyrrolizidine alkaloids that can harm
Homeopathy and Ayurvedic herbal drugs contain many such ingredients
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Not only Ayurvedic and other traditional herbal practices, even Homeopathy formulations contain toxic pyrrolizidine containing herbals which can cause great harm in the absence of strong evidence for its benefits.
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The diagnosis of herbal liver injuries is one of exclusion and using special scoring methods.
We rule out every other possible causes and then diagnose the liver injury due to herbals
In Deepak, it was evident, along with biopsy that herbals caused the liver injury
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An ignorant act of using traditional herbal medicines unscientifically, broke a family apart - mentally, physically, financially
And there was nothing anyone could do about it
I had to accept it now
That Deepak was going to die and a son was going to lose his father
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But the words - they keep echoing in my head
"There is a place, but it is a long journey
If there is any hope for your father, this place holds it
Where is it? - the young man enquires
At place called Kochi"
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Pyrrolizidine-alkaloid related liver injury and VOD is common with herbs used in Traditional Chinese Medicine that there are specific guidelines made for Chinese medical community
In India, the public remain ignorant of this, to face tragedies
onlinelibrary.wiley.com
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Deepak needed a transplant
Vimal, his son was a matching donor
Money was the only obstacle
So I speak with my father - Who is also the director of the Center of Excellence in GI Sciences at the hospital
An open talk - son to father, for a father and son...
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...I felt like my department was the last line of defense against this terrifying disease and we had to go the distance
After hearing the whole story, my father calls up the finance director at the hospital and makes a strong case for HUMANISM
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...and gracefully, the hospital decides to provide the liver transplant procedure completely free of cost to Deepak and his family
I ask and confirm again
"The patient has to pay ZERO rupees"
"The hospital and the Liver Institute will carry that burden for them"
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I could not believe my ears and eyes
I rush to Vimal and ask him to get transferred to our Transplant Surgery unit where his fitness will be completed
To prevent kidney injury, reduce jaundice, Deepak undergoes 3 sessions of plasma exchange
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EVERYTHING IS DONE FOR FREE
There is no clinical medicine without humanism.
And in a record three days, the work up was completed and Deepak and Vimal came under the knife, together
- one giving a part to save the other
Deepak's herbal damaged liver comes out...
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...and Vimal's part of the healthy liver to save his father, goes in.
Thanks to our excellent transplant team headed by Dr. Ramachandra Menon and @drjohnsmathew -
rajagirihospital.com
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The whole process went smoothly as planned
Vimal recovered well post surgery
His father was shifted to the room from the ICU today
He is recovering well (pic below)
Vimal can pursue his studies soon
He was free
Because we did not burden the family financially
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There is a place, but it is a long journey
If there is any hope for your jaundiced father, this place holds it
Where is it? - the young man enquires
A place called Kochi
A sacrifice
A terrifying battle won
A terrible liver disease forgotten
From Kerala to Telangana
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I hope you've found this thread helpful.
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