Switching drugs

Taking meds is never easy.

We are blessed in India to have basic Anti-Retroviral drugs being given free by the government.

The basic combination of three drugs - given in a fixed-dose tablet to be taken twice a day is about the most cost-effective and easy to HIV drug therapy there is.

There is a whole universe of different drugs that can be taken to try and keep the levels of HIV at undetectable levels (the basic goal of Anti-Retroviral Therapy). An HIV positive friend of ours from the US told us a few years ago about the 12 different pills he was taking as part of his ART.

Recently the government decided to switch one of its basic drugs. Instead of a combination using nevirapine - the National ART programme is now using a combination that uses efavirenz.

On the face of it - this is good. The programme had till now been using the nevirapine based regime because it is considerably cheaper than one using efavirenz.

There is one serious problem though - patients using efavirenz often have strong psychiatric side-effects. Vivid dreams and nightmares. Things like that. The good news is that these side-effects go away after a week or two. At JSK we always take plenty of time to help our friends on effivarenz to know about this. We encourage them to take their dose at night so that it will affect them less. We encourage them to keep going - even if they don't feel like it. The meds make a huge difference. It is worth the short-term problems for long-term gain. We have seen the remarkable changes that ART has brought to the lives of our dear friends with HIV.

But that is not what our Positive Friends are hearing at the govt. clinics. Many are afraid. Suddenly they have been given a new drug. Some have stopped taking the drug. Others are taking part of the dosage. We have talked with a number of HIV positive friends who are confused - and have expressed this to the officer in charge of the ART clinic in Thane.

The AIDS message boards on the internet have also been busy. The one that we get - AIDS India - had a string of messages from across the country. This led the director of the ART programme in India - Dr. B.B. Rewari to post this as part of his response:

This substitution has been done over years inside the program and world over
especially when the patients are on rifampicin based ATT regimen. It is also
known that few patients are likely to develop Efavirenz based side effects
(which is true regarding any drug), which becomes even more uncommon when
patient has already been on Nevirapine.

Usually these are transient and disappear in 1-2 weeks time. All the
ART Medical officers and counselors were instructed regarding the need for
counseling on these issues before change.

We are again issuing further instruction in this regard to all ART centers to
explain these possible side effects to patient before switching and advise them
to take Efavirenz at bed time.

Nothing wrong in anything the good doctor has written. Except that at the ground-level we have yet to meet one of our HIV Positive Friends who has had the switch properly explained to them at the govt. ART Centre. And the fact of the matter is that a person takes their meds only if they trust them. Period.

How many of our Positive Friends who are on govt. ART are actually taking the meds now? And if so - how consistently?

We are hoping to play a little bit of a larger role in partnering with the govt. ART centre in Thane to provide ART drugs to people with HIV in our city. We have the capacity and the experience to do it - and have requested the govt. to make us a link ART-centre. The advantage that Jeevan Sahara brings to the table is that we have staff and volunteers who follow folk up in their homes - and work on adherence issues in practical ways - something that the current govt. clinic with its 6000 patients on ART does not have the luxury of doing.

We are still waiting. Hopefully we can post good news about a link-ART centre soon!

Tahrir Square

Freedom is heady. It is hard fought. It shimmers and slips between our hands at times. The whole world has watched the past 18 days as two visions of Egypt clashed. Yesterday the resoluteness of those occupying Tahrir Square in Cairo ended 30 years of Mubharak-rule.

What will the upshot of it all be? Can anyone predict? Can any one of us even turn one of our hairs white (or vice versa - without hair-colouring of course)?

But take look at the vast hive of activity that went on in the square. The good boffins at the BBC site have made an interactive map where we can click on different parts of this vast assemblage and get 'street level' pictures of the drama there. You can access their site by clicking on the picture above.

What fascinates me in this particular drama is the apparent orderliness and self-organisation that took place. Who called the shots for those there in the square? How were decisions made? Who took initiatives to set up different parts of it? What were the relations between the protesters and the military?

Much has been made of the communication tools people used. The BBC picture includes a 'Bloggers Park' section. But more than the tools - is the way that people shared thoughts and ideas - where people came together for a purpose - where strangers took on shared responsibilities.

It is an awesome sight to see people working together. The Tahrir Square experience may not be a true utopia. For all its positives and soul-stirring courage and self-organisation - it is pretty ragged in many ways - a community that may end up being ephemeral. But beyond the immediate flames of freedom that gladden all of us I would argue that there is something else, something very specific about Tahrir Square that twinges at our hearts. The beautiful picture of people - so many of them - living together. That twinge is precisely because we have a road map to a place where we are to live in community. I believe, and I know that we each have a secret - and sacred geography of a place we have not experienced yet - but for which our hearts beat a bit faster - our pulses twitch that tiny bit more.

Tahrir Square. 11.02.2011. One small glimpse, a fractional glance of eternity.

Tarun

Tarun (not his real name of course) is dying.

And his older sister and widowed mother want it to happen soon. And in a hospital.

"Why don't you take him to a hospital and give him and injection to finish him off" they told our JSK staff the other day.

The family is sick to death. Tired. In a cold rage.

Tarun is a young man. He has lost control over his body below the waist. He is incontinent and bed-ridden.

A man comes each day to clean Tarun. He charges Rs. 100 for the service.

Tarun has bed sores. Recently they have increased. He has stopped eating for all intents and purposes.

Our JSK staff have been trying to work with Tarun's mother and sister. Trying to encourage them to care for him more. There in that tiny room that they all share.

The big fear that his mother and sister express is what to do after he dies.

They want him to be taken to a hospital and to die there - our staff informed us recently - because they believe that after death a post-mortem will be done - and the body will be brought back 'packed up'.

What Tarun's mother and sister do not want others to see is that Tarun had bed-sores. They would see that when the body is being washed and prepared for the last rites. 'They will think we did not take care of him' was what they told our JSK staff.

This is crazy stuff. Mind-bogglingly hard to deal with. Where do you even begin? We sometimes don't know what to do. How do you respond to statements like this - which are so far removed from what a loving family is meant to be...

We don't have a happy ending to this story. Tarun continues to die. Slowly. HIV is a hard master for hard hearts.

It doesn't have to be.

Over the 150 plus people who we have known with HIV who have died over the last 8 odd years - many have died with peace. A good death is something precious.

Sheba told me today about a pastor who distributed cake in church after his father died. To celebrate his dear father's entry to heaven. Instead of mourning - there is joy among the tears of seperation.

But for Tarun, on this night, we do not have that ray of hope.

Our staff go every other day to meet Tarun. To spend some time touching him and talking to him. To try and reach out to this family members and encourage them to love their son. They pray with Tarun and assure him of their love. They shift him in bed and dress and powder his bed-sores. Its no wonder that this work takes its toll on us.

No easy solutions. No magic buttons we can press to make everything happy-happy.

But all the while the over-whelming sense that our Lord wants us to keep loving as much as possible. To keep visiting and seeking to help the family to the extent the want to accept it. To keep our hands open and our hearts humble. To pray. And pray. And pray.

Fly me to the moon

Swinging. Eyes wet with the happy watering that comes when wind blows into cheery faces. The moon a yellow boiled-egg-yolk in the sky.

I want to fly to the moon.

Swinging higher and higher.

Tis no surprise that what I enjoyed as a kid is now being enjoyed by next gen Eichers.

Asha in particular loves to move.

And to swing.

High.

In just before Christmas we were visited by our wonderful friends Viju and Molly from the Asha Kiran Hospital in Lamptaput, Orissa. Their oldest daughter Abigail and Asha had a whale of a time.

Here are some pics of their gravity-busting swinging!

Puts my childhood bravado to shame!

Abigail n Asha

Higher

and higher!

Its a miracle the girls lived to tell the tale.

Its a miracle that any of us is alive. Period.

The daily set of improbabilities that we live through ... Concrete evidence of brownian-motion is seen everyday when I drive my scooter.

Grace abounds.

7 meetings

Life is full.

The last 28 hours have seen us participate in 7 meetings. That's an average of one every 4 hours (including sleep time).

Here goes:

1. Our weekly staff meeting with Jeevan Sahara - 3.30 - 6 PM on Friday. We discussed priority families for our home-based care team. We did some staff training in counselling skills. We talked about some of our staff policies - we have a team in a rebuilding phase. We prayed.

2. Our Friday Bible Study - this time at our home. Friday 9-10.15 PM I took the study on sharing the good news of Jesus - looking at Peter's message on the day when the Holy Spirit was poured out on the church - and what our response should be. We spent some time as a fellowship working this out with each other.

3. A Prayer Walk. Friday 10.40 - 11.15 PM After the Bible study we broke up into small groups and went to some of the key areas in our neighbourhood - praying for the people who were having their meals, sleeping, working.

4. JSK Prayer Meeting. Saturday 7.30-815 AM at our home. We gather each week for an hour to pray for our work. We end up with breakfast. Today we ended a bit early since I needed to make the french toast - and our church training was starting soon.

5. JSK Church Partner Training in HIV Care. Saturday 9 AM - 4 PM at the JSK Centre. All day training. Sheba took sessions on treating common opportunistic infections at home and tuberculosis in the morning - I took a session on counselling skills in the afternoon as well as running one of the discussion groups for case studies. We had a very small turn out - but are using it as a staff training for our 5 new staff members.

6. Church Ladies Fellowship. Saturday 4.30 - 6.15 PM at our home. The ladies meet once a month. This time it was our turn to host them. I spent the time in the office preparing for the next meeting. Sheba tells me that is was a wonderful time of sharing and prayer.

7. Informational Meeting about the new 1 Year training for Nurse Aides. Saturday 7.00-8.30 PM at the Bethany Hospital. We shared about the opportunities that a new practical training course which we are helping out with. Had a good turn out of about 30 folks. Over a third were interested candidates themselves. We are excited about giving girls an opportunity to learn in a hospital and home-care setting.


We have emerged from all of these meetings largely intact. I think so at least. By God's grace Sheba and I have not started scratching each other. We are privileged to be living out our life in community. Each time together is another opportunity to grow and share. Though these last 28 hours or so have been a bit extreme in the amount of time we have spent as a family within the broader family of church and work - are so very grateful - Its a really good life.

Part of our satisfaction are the amazing kids we have. Asha and Enoch are veterans of our life-style. They insisted on going to the Bethany hospital meeting - and took the sign up sheet around - as well as played on the spotless and nicely slippery floors of the new building. From everything that we can see - seem to be turning out so well-rounded and sane - despite growing up amidst the often extreme lives of their parents. God's grace redux.

At the end of the day we gathered as a small family of four - for the first time since our supper on Friday. Dinner was maggi-noodles and tang and some bebinca (a goan sweet someone gave us last week). 3 happy Eichers dropped off to bed - and one is still tickling the keyboard.

We do need a break - and that's where our Sunday is so welcome. Its just 15 mins away for me!

Rs. 500

What would you do with Rs. 500?



We *all* have so much. There are so many who have so very little. Lets use money for others. The time to build the future is now. Period.

Woof!

Ingenuity can be played out at small scales.

Take 'Woof' for example.

One of Enoch's latest creations - a lego dog no less.


As a dad with a long history of lego-addiction (mainly in the pre-adolescent part of my life - but with clear relapses in recent years) I am thrilled whenever I see something genuinely creative come out of this wonder of a boy.

Wonder - because for all the inputs we as parents put into Enoch there is a vast amount of who he is about whom we know only the very faintest glimmer, the occasional glimpses of who he really is - and who he is becoming.

Besides the actual making of this little toy (using even smaller pieces to make the whole) - Enoch takes his play into another realm with the role plays and acting out he does with the little menagerie he created this time. He is quite able to spend hours alone, letting the little men and their beasts (or vehicles) live out different adventures. That many of them have a certain amount of conflict involved does not surprise me much - as I still remember some of my own creations which often included the war-like.

But the thrill of peeking in a little bit into Enoch's imagination - to see some of what he dreams about and which rouses his inner fire - put in concrete (if miniature) forms - and then acted out - is a wonder.

As a songstrel-king wrote many years ago:

When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
what is mankind that you are mindful of them,
human beings that you care for them?^a]">

You have made them a little lower than the angels
and crowned them with glory and honor. Psalm 8:3-5

And so before we go - another shot of 'Woof' - Enoch's lego-dog.