SAMVAD- MUKTAA HIV Helpline – Blog

Place – Samvad Helpline Counselors Room

Time – 12.30

Phone Rings….

Cnslr- Namaste, Samvad HIV/AIDS Helpline

Caller- Madam my name is ———-

Cnslr—you don’t have to give your name, you can ask your question.

Caller- Madam, I came to get my CD4 test done. Some time back my weight was 45/46 kg and CD4 was 493 and today my weight is 56 kg and CD4 is 377, so how this can be?

Cnslr- Ok. We can talk about this. But before that let me tell you that your call may be recorded for counselor’s training and evaluation, but our conversation is kept secret.

Look, there is no connection between your weight and your CD4 count.30% variation in CD4 is allowed. So we have to find the reason for the decrease in your CD4.

Caller- is it so? Can you tell me what should I do to improve my immunity?

Cnslr- Sure, can you tell me if you are on ART? And if you are taking ART medicines, at what time do you take your medicines?

Caller- Yes madam, I am on ART for last three years, and madam I have never missed my medicines even once, I take it at 9 am and 9pm without fail. I have set alarm for that.

Cnslr- well, that’s very good. If you take your medicines regularly that shall help to control HIV,but with that you have to take nutritious, home cooked food and remain positive. And not to take any stress, as it also decreases CD4. Can you tell me what do you eat?

Caller- Madam, with morning medicines I take 4 chapaties and tea.

Cnslr- Ok. You should also take green vegetables, boiled eggs, sprouts, milk, and fresh fruits.

Caller- I fear that if I take milk that will result in diarrhea. And madam, can one have non Veg food?

Cnslr- yes you can eat nonveg but it should be cooked properly and should be fresh. And milk will not cause diarrhea. Milk is not taken if you have diarrhea.

Caller- Alright, I like cow’s milk, now I will start taking it.

Cnslr- And you should drink clean water, if possible boiled. Can you do that?

Caller- Madam, I use water purifier, Is it alright to drink?

Cnslr- Yes it’s good, but see to it that you clean the container once a week. With nutritious food and clean water you should have some rest and exercise, like you can go for a walk in the morning.

Caller-Madam, I give dance performances. And dance is a good exercise, right?

Cnslr- Oh, that’s good, do you have daily performances?

Caller- No, No, whenever I am called to perform at the weddings. But during nights I have to attend the customers. Some people tease me, but I have to earn money. My mother stays with me.

Cnslr- See, you have the freedom to choose your work, to earn money. You don’t have to think what others say. Now can you tell me if you use condoms each time?

Caller- yes, almost always. But madam, someone told me that if one is on ART, it does not allow the virus to travel from one person to another.

Cnslr- No, it’s not at all true. ART only controls HIV in the person, so one has to use condom in every sexual relationship, be it vaginal, oral, anal. Do you get it?

Caller-Yes but I only have oral and anal sex.

Cnslr- Then you must know that having anal sex without condom is more risky.

Caller- Madam, but I am not a female.

Cnslr- what does that mean, can you please explain?

Caller- Madam I am a transgender.

Cnslr- It’s alright, but you are a human being, right?

Caller- Madam you are so kind, no one talks like you.

Cnslr- So now you know to use condom every time in any type of sex. Do you find it difficult to insist use of condom to  your customers ?

Caller – Yes sometimes it is difficult, but I try to convince them.

Cnslr- There are some other ways like masturbation, kissing, hugging, to satisfy the need of customer which you can use.

Caller- Madam, can kissing gives TB?

Cnslr – Yes, if the person has TB, then through breathing, or cough. But every person who has TB need not have HIV.

Caller- Madam, how much can I have life? I have heard that HIV+ve people have a short life.

Cnslr- It is not true. HIV+ve person, if takes ART regularly, takes nutritious diet can lead a normal life like any other person. There are many such cases.

Caller- Is it so? Madam, now I am 50 years old. So does my age affect to my infection?

Cnslr- See, you are taking good care of your diet, and medicines. Any normal person may have some problems with age. Like feeling tired or seasonal ailments. You have mentioned about your work, how many more days can you continue this ? Are you saving for your         retirement?

Caller- Yes, I have some gold ornaments, and have an account in bank.

Cnslr- Very good. You really have thought about all necessary things. I am so happy for you.

Caller – Madam, what is your name?  Did you have your lunch?

Cnslr- Oh, sorry we don’t give our name, and talk about our personal matters.

Caller- No, I mean I have been talking with you for long; you have given me good information, so my care is natural!

Cnslr- Thanks for your concern, do you have any more questions?

Caller- Madam, yes, I want to ask you something. Some 15 days back I had a customer, he is young, not yet married, I tried to discourage him. But he did not listen to me. Now I am worried for him. Can anyone get HIV with only one incidence?

Cnslr- Yes, there is probability of getting HIV transmission in single sexual act. And have you shared your  HIV status to this person?

Caller- No, I have not, otherwise he would have killed me.

Cnslr- look, you said that the person is unmarried. Now when he gets married there is risk to his wife also if he is infected. Can you ask him to get his test done? Or give him Helpline’s Number, so that he gets all information.

Caller- Yes, I can do that. Madam, I have decided to give all the information you have given me to as many people as I can, and will distribute the cards also. Can this madam at ART center give me your cards.

Cnslr- Yes ,you can get the cards. And it’s really heart worming that you will give information to others. You can save our number and even call from your cell ph. Or when you come to center you can call from here. This is free.

Caller- Sure, madam you are God send today. You gave me so much information. And believe me I could not have talked with the counselor at the center as openly as I talked with you. Then as I am a transgender people don’t treat us nicely. You are so good. I feel that I was sleeping with wrong information. You have opened my eyes. Now I shall remember everything you told me. And take care.

Cnslr- Very good and you can call any time if you have any problem. Helpline is open on all days from 9.30 to 8.30.

Caller-Madam, my name is ——–.

Cnslr – As I told you earlier you don’t have to give your name. But if you want us to save your name we can do that with your consent.

Caller- yes, so that next time I call you will recognize me.

Cnslr- Whenever you call you will get correct information from any counselor here. Here the phone can get connected to any line. But rest assured that your call is kept secret. And given correct information.

Caller- Thank you madam,I think after talking with you my CD4 count must have increased. Thank you, now eat your lunch, and I will also. Thank you.

The fear of HIV makes a person restless, and finds smallest reason to call to Helpline.

Here is a repeat caller who has called at least five times in three weeks to take information about HIV. Initially all his misconceptions and myths were answered and removed and he was asked to visit his family doctor for his minor ailment. He was reading about HIV on internet, in books, and started imagining and experiencing the symptoms, connecting to the infection of HIV. Each time the call was with different symptom, like acidity, nausea, headache, and itching in genitals.

The counselors told him that HIV does not have any symptoms. Headache, acidity; nausea could be by any different reason, like lack of sleep, oily food, stomach upset, stress, etc. He can take advice of the doctor. If he was not in any risk of HIV then he must not imagine of infection. To confirm infection of HIV only option is to get blood test done. He was scared to go to the doctor.

But the empathetic and patient hearing by the counselors and motivation to go for test at last made him take the test. He called with the report which was negative and the itching of genitals was due to his diabetes, and was due to high sugar level.

In spite of the negative report, the fear was still persistent. He called to know if the tongue turns black if one has HIV infection. The counselor asked him if believes in the report which is negative. Did the doctor tell him that black tongue can be due to HIV infection? He said that he knows that the result of test was correct but suddenly these thoughts start coming. Here the plan was made to do self motivation. He was taught the technique of self motivation, telling oneself that he is negative, and doing deep breathing to change the thoughts, at the same time not to miss his medicines for diabetes.

He promised to do this and excused to have bothered so many times, to which the counselor told him not to feel guilty; Helpline is always with you for any help.

There was no call again, means the issue was solved. Sometimes our counselors have to show tremendous patience while dealing with such callers. But they always are happy to help and successful in handling the calls.

Samvad   Helpline has started a project called “AASHA”. Helpline provides a Telephone box/ Mobile handset at the ART centre, from where patients can call to Samvad Helpline free of cost to get any information related to their illness and medicines. Now AASHA project is running in four districts of Maharashtra State – Pune, Nagpur, Akola and Kolhapur. In the month of April, we have received total 603 calls from these centers.

This call came from one of this center. The caller is a 36 years old person, not educated, owns   electric shop. He comes to ART center for his wife and three daughter’s ART medicines. His wife was tested HIV+ve four years back, when their daughters were 7, 4 years of age.  In her third delivery she was tested for HIV and was positive, and the baby girl was also positive. Now the fourth baby was born, and as she was registered at the Government hospital, she was taken care so as the baby does not get infection. Their happiness increased as the newborn was Negative. The caller is also tested for HIV every six months and is Negative. He feels that since his wife is positive and three daughters are also positive, his reports must be wrong. He thought that since one partner is positive the other will automatically be positive. He also told that earlier he did not know the importance of using condom correctly each time of sex. The counselor assured him that there are cases of discordant couples, but it is important for such couples  to use condoms correctly each time one has penetrative sex which could be of any type – oral, anal or vaginal, to prevent getting infection. And as he is getting tested every six months and the results are HIV negative means he is not infected, but should be careful in future. Counselor also told the caller to have nutritious, home cooked food, and clean boiled water which helps improve the immunity. At this point the caller asked if HIV positive people can eat fish. To which counselor told him that any non vegetarian food is ok, only that should be fresh.

The call was very smooth, and the caller was satisfied to get the assurance about his report. He promised to save the number for future use if his wife needed to get any information.

Samvad Helpline is planning to start ‘‘AASHA” at more ART centers to reach more needy people.

______________________________________________________________________________

We at Samvad Helpline often get calls where callers ask if there is life after HIV. Our trained counselors assure the callers that if one takes nutritious food, follows ART adherence, takes needed rest, and remain positive and happy, then any HIV positive person can lead a normal span of life like other people. And with awareness increasing some people really follow the rules. Here was a call from a 36 years old woman who called to ask about the variation of her CD4 count. She was tested positive 17 years ago, when her husband of six months died, and she came to know about his HIV status. By the time she was pregnant, but had abortion on Doctors advice. She started her studies. She met a person, with whom she shared about her HIV status, but still he wanted to marry her. He even registered her at Government Hospital. When her CD4 went down to 336, and she was in bad shape, her husband vanished. With the support of her parents, she decided to be strong and live full life. Slowly her CD4 count went up to 775, now she has a job, and she is studying for NETSET. The woman was very positive, knows details of the illness, but now is concerned about the ups and downs in CD4 count, fearing if her ART medicines are not working, or is this due to some new infection, her skin color was becoming darker, she felt that as she is positive for last 17 years, if her life is coming to end. Her words were “I don’t want to die”.

After praising her for her positivity, ART adherence, approach towards life, the counselor told her that variations in CD4 are normal. About the skin color she can visit the doctor. The counselor also advised her that with ART adherence, healthy home cooked fresh food it is important to get at least 6/7 hours rest. And avoid depressing thoughts. The counselor also told her that there are cases of HIV positive people living full life, and actually she can be role model for other positive people.

Such strong, positive people give a happy feeling and motivation to the team of Samvad Helpline.

It is said that world is made of ordinary people, and some extraordinary persons. Sometimes these so called simple ordinary people do such extraordinary things, that we feel to salute them.
We are talking about a caller in his thirties, working in a semi government health centre. He called to take detailed information about HIV/AIDS. The reason being he got his test results three days back,
which are HIV +ve. He was in relationship with a woman, and they were going to get married soon. When he told about his status of HIV to her, she told him that she was already infected but did not share this with him. The person did not show any anger, no blaming, no feeling of distrust, no regrets. He said that he will call again for more information and prevention and wellbeing. Normally our counselors have to counsel the callers for changing the viewpoint, giving support to the partner, but here this simple ordinary person amazed the counselor with his action.
In this world where there is so much prejudice and discrimination against HIV affected people this kind of attitude and support is the need of the day. And such stories surely raise hope.

Samvad helpline caller was a 17 years old girl (student) from Vaishali, a rural village in Bihar, who is negative for HIV/AIDs.  She was very anxious to know whether she could stay with her mother who is HIV positive, what sort of diet she should follow, how to deal with her fever and TB infections etc. The mother was just diagnosed for HIV since her father died few weeks back.  Our expert counselor calmed her giving all the required information step by step viz, HIV does not spread by staying, sleeping, eating together or sharing the same toilet. It is mainly spread through, unprotected oral or vaginal sex, blood transfusion, usage of unsterilized syringes etc.  It is very essential to strictly follow ART (Antiretroviral Therapy) in order to keep the HIV/AIDs infection under control. HIV infected can have all kind of foods such as rice, dal, leafy vegetables, sprouted pulses, milk, eggs, meats, curds, all kind of fruits etc. Normally when the person is infected by TB, the medicines for TB are prescribed by the physician for 6-8 months or upto one year. Medication for both ART  and TB should be taken as per the strict instructions given by the physician since in some cases, there can be side effects like; nausea, headache, excess sleeping, insomnia, drowsiness,  rashes, itching etc. she could understand the explanations very well and was happy by the time the call was concluded.