Legon, Tibet, Clinic Breaks Ground
It has been nine months since our return from Legon, Tibet and two years to the month since we were first asked by Lama Tenam, a former resident of the community, for our help with the health care of his village.
Legon is a community of villages and nomadic herdsmen numbering around 20,000, located near Dzogchen in the area known formerly as Kham, Tibet. It had no accessible health care. The community did not have a tradition of midwifery either which meant that complications arising with pregnancy and delivery of new borns was quite high. Every family either new from direct experience of their own, or reported by a close relative, of deaths arising from labor.
From July to December, 2013, Bodhi Seeds would conference with contacts in the area about how to best serve the health care needs. We agreed to have a trial run at sponsoring a local Tibetan doctor and refurbishing several rooms of an old building to serve as a prototype of what might be a future center. We received reports about how many people the doctor was seeing and how many deliveries he was performing, but still, it proved difficult to say what needed to be done without a close up visit.
September, 2014 Susan and I and Colin Coltrera, our translator, arrived in Chengdu and made our way westard to Legon. Lama Ajok guided us through the nooks and crannies of the domain he knows so well. He showed us the villages, the people, their wellnesses and their illnesses, those who needed urgent help and support, and a long wish list of many projects for the future.
The clinic would have the support of the local district health officer whose family was also from Legon. Dr. Lobten would continue on as the clinic's doctor and Dr. Chen, a Chinese doctor specializing in women's health agreed to come if we could build a birthing room. Lama Ajok would continue to be the administrator for at least several years. A site was already available on the grounds of the monastery.
The pilot project, the statistics we learned from the doctors' reports and our personal observations of the community's willingness and experience in handling projects of this size convinced us of the need and feasibility of sponsoring a larger clinic.
January, 2015, Bodhi Seeds agreed to sponsor the construction of the health center. It would have a birthing room, examination rooms, overnight rooms for patients and residents quarters for doctor and nurses. It would provide basic health care including minor trauma care for broken bones and lacerations, burns and sprains, care for infections and chronic illnesses, prenatal and post natal care, a place to receive vaccinations and health care wellness and education. It would provide an area to stabilize patients before transfer to larger trauma centers and hospitals for complicated surgeries and deliveries.
Ground was broken in March, 2015 (please see image above) and construction will likely be completed by winter of 2015 (please see follow up post). The construction costs to Bodhi Seeds was $50,000. This doesn't include furnishings and equipment, nor does it include operating expenses. We did learn this month that the center overcame a significant hurdle for construction of this type. The Chinese government agreed to issue the clinic an operating license and offer it a grant as well.
The future challenges from the donors' points of view are funding the equipment expenses and operating costs. However, the success of a project like this, is dependent not only on its donors, but also on the community and its leadership. There is not a more dedicated community leadership than Lama Ajok and Rinpoche and our two doctors and their staff. They understand the importance of working collaboratively with local, State and international parties and have a demonstrated history in doing so. They work practically and efficiently, generously and compassionately.
Please donate what you can so that we can continue to support the acquisition of equipment and the operating expenses of the clinic.
http://www.bodhiseeds.org/generosity.html, click on General Fund in the drop down menu.
Clinic construction: $50,000 (reached).
Operating expense estimate, $20,000 annually (2 doctors' salaries and staff, replenishing supplies, medications)
Capital equipment estimate, one time (exam and obstetrical suites, ultrasound, ekg, neonatal warmers, autoclave, minor surgical and obstetrical equipment): $44,000
Parasitic disease, specifically, echinococcosis is said to be endemic in Tibet. It's an insidious disease that sometimes just presents as fatigue or progressive loss of weight over years.
While we were visiting a family in their home, this young mother simply manifested in the room... ghost-like.You can see she was gaunt and looked wasted. She had no energy and hardly any expression on her face.
Her belly was rock hard and distended. She had received some help in the past and I was told she had xrays. I didn't know what was wrong, but we would try to help her.
Almost a week later, while travelling on dirt roads, village to village with Lama Ajok, he brought the car to an abrupt stop. This woman appeared again, on the other side of a wire fence, leaned over the fence, and gave Lama Ajok an envelope. It was her xrays. Lama Ajok took pictures of the xrays by holding them up to a sunny window and then forwarded them to me.
Once home in Seattle, I consulted several physician friends who felt that her liver was enlarged and had at least one, if not more large cysts. I thought there was a good chance she had cystic ecchinococcosis of her liver and needed surgery if she was going to survive. Bill Warnock is the head of Lhasa-Boulder Sister City Program and knows a great deal about the disease. I called Bill and asked him if he knew any surgeons who could help us. Bill had worked with a surgeon in Lhasa and knew this same doctor now worked in a military hospital in Aba, at least several days drive from Legon.
I gave the phone contact to Lama Ajok who called the surgeon. The surgeon, a Tibetan who spoke the local Kham dialect, agreed to see the woman. I thought everything was set, but mother would not go. She had no child care for her children and needed to consult the lama to find an auspicious time for the journey.
Perhaps a month or so later, she was able to make the journey. Doctor saw her, but the disease was too advanced. In some instances, the cysts take over a good part of the organ, and nothing much can be done. Perhaps in some cases, a liver transplant is possible, but not here.
Lama Ajok made the journey back to Legon with this young mother. I can imagine the trip home was pretty quiet. I haven't heard how she is doing; I'll make the call to Lama la and ask.
Bodhi Seeds provided funding to enrich the diet and to rent separate living space for these two young monks as they underwent medical treatment for tuberculosis.
Bodhi Seeds supports the Tso Jey Clinic which served as a site for T.B. education .
The nurse at the clinic distributed state funded medication.
Bhodi Seeds contributed to the cost of special lab tests and medication needed to treat a Rumtek Monastery staff who had a complex case of tuberculosis (See her letter below.)
Through Bodhi Seeds and its connection with Rumtek, Dr Donald Ross helped coordinate a response that diminished this great threat to the inhabitants of Rumtek. Below is his account .
Reported in the Seattle Times, June 9, 2015, "Globally, 9 million people contracted TB in 2013, and 1.5 million died from it, according to the World Health Organization. Nearly a quarter of all the cases occurred in India, which has the world’s largest epidemic.
Overall, drug-resistant bacteria cause only about 5 percent of all cases, and XDR (extensively drug resistant) bacteria are a small subset of that group, causing about 48,000 cases in 2013. But XDR-TB has shown up in 100 countries, and it can be deadly, particularly in countries with weak health-care systems.
Standard TB usually requires treatment with four drugs, and can take six to nine months. Treating XDR-TB takes longer, sometimes a year or more, and requires more drugs.
The drugs have unpleasant side effects that are hard to tolerate....They cause nausea, weakness and other problems that make patients want to quit taking them before the full course is finished. But missing doses and quitting too soon are precisely what cause drug-resistant bacteria to develop — requiring even longer treatment with more drugs and nastier side effects."
May 2014. as a Bodhi Seeds administrator, I received a casual update on news from Rumtek. Embedded in conversation was news of two cases of tuberculosis... two young monks in their teens, who had been treated before. As a physician, I felt very concerned and that definitive action was needed. What actions could Bodhi Seeds take?
I knew that in Rumtek Monastery, hundreds of monks live close together in rooms that are not ventilated. The cases already identified had been treated before. Could they now have multi-drug resistant tuberculosis? They were living among the general population and could infect their close contacts. This set the stage for a serious outbreak, especially if ill monks were not isolated and treated quickly, and their close contacts weren't diagnosed and given proper treatment.
I made contact with friends and friends of friends in the US and in India: Dr.John Burnhill, Kunchok, Dorjee, Dr. Masae Kawamura, Dr.Tsetan Sadutshang from Delek Hospital in Dharamsala,, Dr. Christine Ho, and King County Public Health Department. Everyone arrived at the same conclusion: the monastery community needed to be screened. Active cases, whether symptomatic or asymptomatic needed to be treated with direct observation treatment and quarantined until no longer infectious. Screening would be complicated as it involved interviewing the entire community for symptoms of tuberculosis, locating all close contacts of active cases, obtaining chest xrays,, and sputum for microscopic analysis and culture. We discussed a variety of plans, including one which would have flown a Bodhi Seeds consultant to Rumtek to oversee the necessary interventions. The Ebola crisis was also at its peak at this time, and our consultant was called to Africa to help.
Months passed and many phone calls and emails were exchanged. It was getting closer to the time when the monastery virtually closes down and monks disperse across the country for family visits and for their debate contests. They would make their way to the Kagyu Monlam in Bodhgaya where as many as 10,000 would gather to listen to teachings. This is a perfect storm for transmitting tuberculosis.
Four months later, there was still no response to screen the community. Monks would be leaving within several weeks. Then, unfortunately, an immune compromised Rumtek Monastery staff person contracted the disease. From the lab studies I saw and discussed with experts, it appeared as if she might have XDR-Tb. Given her complex situation, Bodhi Seeds paid for her diagnostic studies done with experts in Delhi. Now, with this turn of events and the emergence of possible XDR-Tb, wheels began to turn more quickly.
I had further consultation with Dr. Tsetan and with the administration of the monastery. The Revised National Tuberculosis Program (RNTP) team from the State of India would be called in to help. The team did in fact arrive within a week and performed extensive teaching for the community of monks and villagers on the cardinal symptoms of tuberculosis, the causes, tests, treatments and preventative strategies. More cases were identified for treatment. It was reported to me by a resident of Rumtek that the monks felt well informed. However, the State team did not pursue any active case finding. This meant that some cases would likely go undetected. Regrettably, endemic tuberculosis in the monastery is still a reality.
As of today, I have no reports of new cases. All those that have been treated have responded to treatment as they await news of a definitive cure. The resident with probable XDR-Tb has been able to reduce the number of drugs she takes (see her letter below). But, the RNTP team could not perform any screening of close contacts of those with tb nor screening of the general community . Sadly, because of the complexities of diagnosis, treatment and prevention, the scientific journal Nature reports, "Physicians in India have identified a form of incurable (Totally Drug Resistant Tb, TDR) tuberculosis there, raising further concerns over increasing drug resistance to the disease." Because of the lack of screening and surveillance, Rumtek is at risk for another outbreak. Bodhi Seeds will continue to monitor the situation at Rumtek and help as it can.
Letter from Tashi Wangmo (name changed), patient with probable EDR-TB:
"Dear Tashi la,
Hope you are doing well. I wanted to let you know that I arrived yesterday from Delhi. In Delhi I had taken my recent xray and liver function test and CBC reports. The doctor I am consulting mentioned that my xray report looks good compared to the earlier xray reports. To sum up he says I' m improving hence, removed cycloserine from my TB medicines. So I no longer take cycloserine. Further, I'm no longer contagious and told its okay not to wear mask or cover my mouth but m asked to maintain seperate dishes/utensils for my food.
So I'm happy to inform you that as per doctor's remark I'm improving and will have to visit again to Delhi after 3 months and hopefully my injection will be removed as well. Am still continuing with the vitamins Masae* had sent. I have written the same to Masae.
Click here http://www.bodhiseeds.org/generosity.html to support Tso Jey Clinic
Ugyen & Tandin After Kidney Transplant
Dear Acharaya-la and organization,
This journey began in September, 2014 when Ugyen and her husband, Tandin, left Bhutan. Ugyen was in critical need of a kidney transplant and in Bhutan, Tandin had been confirmed as a possible match for donating his kidney. They travelled by train to Bangalore, India seeking to be placed on a kidney transplant list . They established a modest residence in Bangalore as they underwent seemingly endless testing. Ugyen had to receive hemodyalisis during the wait, and Tandin had to undergo tissue typing to see if he was an acceptable donor.
In December, 2014, the couple discovered that Tandin was, in fact, a good donor match, and Ugyen, following kidney dialysis, was gaining strength for transplant surgery. Ugyen received her kidney from her husband in January, 2015. There were some difficult times during recovery for both of them, especially for Ugyen. She did, however, progress according to the schedule outlined by her kidney transplant team, and has been given the go-ahead to return to Bhutan. As of June, 1, 2015, they are on their way home.
They are required to return in 3 months to the Bangalore clinic and hospital for exams and testing.
Their financial status remains dire and they will require addition help for this trip. It is estimated that they will need $5,000 in additional funds for doctors' visits, medication, lab tests, transportation, food, and housing.
Of the $9,600 received in the initial request for funding, $9,100 have been spent over these nine months. It's clear, with your generosity, Ugyen is alive today! Acharya Tashi and Bodhi Seeds received this thank you that goes out to all of you from Tandin:
Bodhi Seeds has an URGENT FUNDRAISING APPEAL that we would like to share with you all, in hopes that it will inspire you to help in whatever capacity you are able.
Ugyen Lhamo is a 44 year old Bhutanese woman who is suffering from acute end-stage kidney disease/failure. She is the mother of two children, a son (age 20) and a daughter (age 17). She is also a devoted wife to Tandin Wangchuk, and loving friend to many. To continue living, Ugyen requires a kidney transplant. Her husband, Tandin, has agreed to be the donor for her kidney.
It is reported that Ugyen has been suffering from acute migraines for a long time, relying on medication to relieve the symptoms. She has been told that the migraine drugs may have been the cause for her kidney failure.
Ugyen has been described by her sister, Tshewang Lhamo, as being: “Soft and gentle. She was one who always said, "welcome to my house" even when there was no food or money. She is patient and kind and found a way to help others even when she did not feel so well. She took care of her husband's Mom and Dad as well as her own two children.
Her husband is skilled in making bells and has worked on consignment out of their home, often making enough for the family's food. As you know, he is faithfully at her side now.”
The Bhutanese government will pay for Ugyen’s surgery which must be done in Bangalore, India—5,000 miles from home. She would not survive the wait list for the surgery if it were done in Bhutan. The medical facility in Bangalore requires payment for laboratory studies which are quite frequent, hemodialysis (cleaning of her blood because of the loss of kidney function). In addition, the impoverished family must also raise money for their own room and board before the surgery and during the recovery phase. Tests must be done on Ugyen as well as her husband/donor.
Cost of kidney failure is very high in India. The cost of getting haemodialysis (12 dialysis / month) is around Rs. 12-15,000/- per month whereas for peritoneal dialysis it is around Rs. 18-20,000/- per month. (Other sources put the range between 20,000-24,000/month).
Getting a transplant done costs around Rs. 4 lakhs on an average. After that the per month recurring costs may vary from Rs. 5,000/- to Rs. 10,000/- depending upon the condition of the patient.
A normal person in India cannot afford this extremely costly treatment. The problem is compounded by the fact that kidney failure is incurable. So these costs have to borne till the patient passes away. This puts a perennial load on the patient and his/her family. This is the most important reason why only 2-3% of kidney failure patients in India get treated.
Summarizing costs on the high end:
Total costs (high side): 48,000 IR ($780/month) for costs related to preparing for surgery
Total living costs (on low side): approx. $755/month
Total living plus medical costs: approx. $1,535 per month (does not cover medical costs for donor)
Ugyen will need at least $1,535 per month, while in Bangalore, until her transplant can be performed. After the transplant, there's no knowing what the cost will be, because we can't predict complications that might arise from the transplant surgery and from harvesting her husband's kidney. We are told she will need to remain in Bangalore for six months post operation.
Post op, she'll need continued support for room and board, as well as immuno suppressant medication, which alone cost on average 15,000 IR or about $250 per month.
This is an extensive, continuous, life long undertaking. We don't know what costs are borne by the Bhutanese government, but Bodhi Seeds is doing everything we can to help in the short term and long term.
Before this appeal, Bodhi Seeds had already sent $3000 to help cover the medical and accompanying expenses. Due to the severity and scope of the situation, those funds have already been exhausted.
If you are able to contribute to this worthy cause, please do. Any amount, in any capacity, will make a difference. Thank you for your kind consideration.
To place a donation, please click here.