Ana Maria Ribeiro Carvajal Castellano

Professor H. Rawlings

ENG 106

November 29, 2014

A turning point in life

It was the year 1965, I was 13, and Johanan was just 2 years old. Our families were

living in Sorocaba. His father was a traveling salesman and his mother was a beautiful and

elegant lady, with a big and lovely smile in her face spreading joy and happiness all around.

My mother was a hairdresser; she had a saloon in the front room of our home, and Sister

Castellano was one of her customers. One day I heard a frantic agitation inside the saloon,

they were saying Sister Castellano was in the hospital with his little son, that was very sick.

He got measles and bronchopneumonia. The only way to save his life would be to have a

complete blood transfusion. Alone, in despair, her mother did not know what to do, and

finally with the help of Sister Wilma, the Relief Society president, she decided for

authorizing it. The life of little Johanan was saved, but with the transfusion he also got a

terrible illness transmitted by the virus of hepatitis C, which was then an unknown disease.

Twenty five years later, on a beautiful and simple ceremony Johanan and I got

married in the Sao Paulo Temple. Life was calm and bright, we had no financial problems,

and we were delighted with our two cute and pretty girls, our precious daughters.

Suddenly, five years later, a terrible storm began to hang over our heads, and after a

blood transfusion campaign sponsored by Sao Paulo North Stake, Johanan received a letter

inviting him to go to Sao Paulo Hospital, at the office of Infectious Liver Diseases because

through the tests it was discovered he got hepatitis. We marked an appointment and went
there. The doctor informed us he got hepatitis C, it was a disease transmitted by the virus

C, he said they did not know much about it, and nothing else could be done. There was a

treatment under development in the USA, and within a period of about three or four years it

would be possible to have something in Brazil. My husband was then 355 pounds, but none

of them even mentioned anything related to his health and weight. They were cold,

practical and did not show any concerns regarding my husband’s health. We were

completely calm and relaxed within the inner side of our ignorance, since we knew nothing

about, and my husband did not have any symptoms, nor diabetes, or high levels of

cholesterol or triglyceride. The level of his glucose was normal; we thought it was nothing

serious and continued to live our lives the way we did before.

In 2.000, São Paulo Hospital, from UNIFESP (Federal University of Sao Paulo)

called Johanan to participate in the first protocol for hepatitis C in Brazil. During a year he

self-injected doses of Interferon in his belly and took Ribavirin tablets. Doctors said it was

a strong treatment to inactivate the virus, but we didn’t receive any information regarding

the seriousness of his health state. In the very first week I realized my husband started to

have side effects such as fatigue, fever, chills, and depression. Once a month he would go

to the doctor to get the injections and to take blood for tests. His doctor never said what

was going on, and I was afraid to ask. He did not give us any relevant information to guide

us through the treatment. At that time I was a resale woman for Amway products, and

among them there were organic vitamins and mineral supplements from Nutrilite, and I

asked the doctor if it would be interesting for my husband to take them. He said it was not

necessary. I knew something was happening to Johanan because he was not the same

anymore, and I decided by myself to give him those vitamins, and he got better for it

relieved the symptoms. After a year he finished the treatment, and the doctor said the virus
was negative. We were very happy and Ï thought to myself “Gosh, Johanan was healed!”

His doctor said hepatitis C was not the problem anymore, but he still had a little bit of fat in

the liver, and for that he should lose weight. We looked in the directory of our security

service and found out an endocrinologist who gave him a sheet with the indications for his

diet. Once again I noticed he did not explain anything related to hepatitis C and/or fat in the

liver, but since I thought Johanan was cured, I did not think about it.

In 2005, Johanan and I went to the United States where he received an award of the

company where he worked because he was the best salesman. We spent 10 days in Florida,

we went to Disneyworld, we visited Universal Studios, we met Mickey and Minnie, and we

lived the dream of our lives. At our return, because the company planned to move the

Commercial Area to Osasco, we decided to move to Sorocaba, a pleasant and important

city twenty minutes away from where my husband would work. In January 2007 we moved

and two weeks later, my husband was called to be the Stake President for Trujilo Sorocaba

Stake, from Sao Paulo North Mission. He was still working in Sao Paulo because the

company decided not to move to Osasco, and we have already bought our house in

Sorocaba. It was very hard for all of us, but there was nothing to be done.

In 2007, because of an ulcer endoscopic exam my husband discovered he had

varicose veins in his esophagus. When delivering the exam result the doctor told my

husband he got a problem in the liver. I remember well about it. Johanan said, “Oh, no,

Doctor I have nothing in my liver, I was cured. The tests for virus c were negative. I have

nothing now.” The physician then said, “You better go to the doctor who treated you in

São Paulo, but if you need, there is a hepathologist who comes to Sorocaba once a month,

and you can set an appointment with him. He belongs to the Transplant team of Albert

Einstein Hospital.” My husband and I were thinking about that. If he was cured he did not
need to look for a transplant specialist, mainly because Albert Einstein Hospital was a

worldwide reference, completely private, and only rich people could afford it. When we

asked the doctor about what was going on, he did not even give an answer to our question,

and once again simply said: “You better return to the doctor who treated you.” Then, we

went to the UNIFESP office, showed the endoscopy, and again the doctor did not say a

word about it, asking my husband he would need some more blood biochemical tests. The

private health insurance my husband got from the company where he worked was very

appropriate, for it did not take long for the results, which once again we did not understand.

Two years passed by, and every month my husband and I used to go to the doctor’s office

giving him the blood results, getting the form for the next month exams, and every time

when asking about the outcome the doctor always said it was within the expectations.

In 2009, my husband began bleeding at night; his pillows were full of blood. His

belly began to grow, the color of his skin was changing, he was not feeling well, and we

suddenly realized something really serious was happening. When arriving at the doctor’s

office my husband told him he was tired of coming and going without receiving any

treatment, any pill, any relevant information and he seriously asked the doctor for answers.

The physician stood in silent for a moment and then said: “I am going to meet with the

other doctors of the medical board, and tomorrow we will give you a final diagnosis.” The

next day we were there, and the doctor said all at once: “Johanan, you have cirrhosis caused

by fat in the liver due to hepatitis C. There is no treatment. Your level is in the final stage,

there is nothing else to be done. When you need you can go to any hospital and ask for their

help. They will assist you through the government security health system; there will be no

cost for you. ” Johanan then asked: “Doctor what about a transplant?”, and he said: “There

are others in worst situation.”

 I was terribly disappointed, after nine years since the first treatment, not a single

doctor told us anything about the real situation. My husband was too fat, had hepatitis C,

fat in the liver and we were not informed of how serious it would be for him to remain fat.

What could be the consequences for that? Couldn’t the doctors have told us anything about

it? Could it be avoided? I found out at internet that since 1948, the Universal Declaration

of Human Rights recognizes “the inherent dignity” and the “equal and unalienable rights of

all members of the human family”. The human right means what is owed to the patient as a

human being, by physicians and by the state and it varies in different countries and in

different jurisdictions, often depending upon prevailing cultural and social norms, and

decision-making power to the patient. As a patient, the person has certain rights. Some are

guaranteed by federal law, such as the right to get a copy of the medical records, and the

right to keep them private. Many states have additional laws protecting patients, and

healthcare facilities often have a patient bill of rights. There is a lot of work to be done to

clarify the relationship between human rights and the right to health, including patient

rights. If the person is rich, than the patient rights are included because he or she is going

to pay for it, but what happens if the person has to use the government health security? It is

a good question, and we still do not have answers for that.

The physicians from UNIFESP did not give us any information regarding what was

going on. I could not understand. It sounded contradictory to me. I went to internet to get

information about it, and I was really angry when discovering it could have been avoided. I

found out through researching that cirrhosis is a disease that progresses slowly without

symptoms. For example, chronic hepatitis C infection can take up to more than 30 years to

progress to cirrhosis in some people. The healthy liver cells are replaced by scar tissue,

which prevents the proper functioning of the liver. The scars block the flow of blood into
the liver and it slows the processing of nutrients, hormones, drugs, and toxins that are

naturally produced by our bodies. It also slows the production of proteins and other

substances made by the liver. It can be caused by hepatitis C, fatty liver and alcohol abuse.

Nevertheless, fatty liver is a reversible condition and it usually goes away on its own, in

normal cases. Fat in the liver often has no symptoms and does not cause any permanent

damage, except in such cases where it is associated with other diseases as hepatitis c or b,

and morbid obesity which was the case of my husband.

While searching at internet, I realized that this suffering could have been avoided

since it was associated with obesity and chronical viral infections of the liver, if the doctor

had only asked us to look for a nutritionist who would have helped us in the reeducation

process to lose weight. Instead the doctor waited until the point of no return, to tell us

nothing could be done and that he would die. He received his death sentence, and I decided

not to accept it, because deep in my heart I knew something could be done. I prayed to the

Lord crying for his help, and it came up to my mind to study Nutrition. If Johanan was

going to die, at least I would learn the steps to help people how to avoid such situation. I

was praying every time I could and I felt deep inside my heart, my husband would be

healed, even though I had not any idea of how it could be done.

I started to study Nutrition, and in the meanwhile I saw my husband getting worse.

Nevertheless, when he was in the church he had strength to do everything. The Lord was

with him all the time. Nobody knew he was sick. In 2010, on the last Friday of February,

during the night, Johanan was very bad and he asked me to call that doctor from Albert

Einstein Hospital. We were thinking of selling everything we had to pay for the medical

expenses. Early in the morning I did that, and the receptionist said the appointment had to

be set a month in advance, but she would call the doctor to ask him if he could talk to us.
Fortunately, somebody cancelled and he attended Johanan. It was something very

impressive because in just one hour we have learned from that doctor more about cirrhosis,

fat in the liver, and hepatitis C than in the past ten years since Johanan started his treatment.

On the next Friday, Johanan was in the transplant line, but the doctor said he would be

necessary for him to lose 100 pounds before getting the surgery if he wanted to live and

overcome the disease. On March 10th there was held a special stake conference where

Johanan was released due to his health problems and another stake president was called. It

was something very outstanding, because when the person get cirrhosis, one of the

symptoms is encephalopathy, which is characterized by personality changes, intellectual

impairment, and a depressed level of consciousness. It never happened to Johanan, until the

day after his calling release.

Albert Einstein Hospital has a partnership with the government, instead of paying

USD 20 million dollars of income tax, they use this amount of money in a transplant

program including, liver, heart, kidneys, eye, etc. It means the patient has the treatment for

his disease in one of the best hospitals in the world through SUS, the Brazilian health

system. Johanan was still waiting on the transplant line, and we were still praying and

crying for the Lord’s help.

One week before the transplant surgery, Johanan was almost dead. I called the

bishop and the stake president to give him a health blessing. He was not responding to me,

he was laid on the sofa unconscious. After the blessing he woke up, sat on the sofa and

greeted both the Bishop and the Stake President, completely normal. I knew a miracle

would happen, and I was waiting for the telephone call from the Transplant Hospital.

On July 31st, 2010, I received a calling from Albert Einstein Hospital. There was a

liver waiting for him! He entered the surgery room at noon, and at 8 o´clock pm, I saw him
again still alive! The doctor told me that night he would not resist if he did not get a new

liver. Four years have passed already. I am a nutritionist specialized in helping people learn

how to live better lives eating well. My husband is healthy, living a normal life as a

transplanted could be. He is still under treatment, and now on a quarterly basis he goes to

Albert Einstein Hospital for his liver follow up treatment. I am very active in the church,

our two daughters are serving on a mission, and we thank God for his tender mercy

permitting us to live together as well as keeping our goal of helping people live better lives

towards their journey to eternity.

Cited Sources

http://www.webmd.com/digestive-disorders/cirrhosis-liver

http://www.hcvadvocate.org/hcsp%5Carticles/Herrera.html

http://www.mayoclinic.org/diseases-conditions/hepatitis-c/expert-answers/hepatitis-c/faq-

20058533. Answers by Michael F. Picco, M.D..

http://www.medicinenet.com/cirrhosis/article.htm.

http://www.hepatitiscentral.com/hcv/whatis/encephal.html

http://www.liver.ca/liver-disease/types/cirrhosis/hepatic-encephalopathy.aspx

http://www.nlm.nih.gov/medlineplus/patientrights.html

http://www.who.int/genomics/public/patientrights/en/