Transformed Lives Amongst Chronic Patients
Imagine that you live in a rural village, with little access to health care, and even worse, no help for a chronic illness that desperately needs treatment.
Vicente
Physical activity provoked violent fits of coughing and his airway would start closing. To avoid this, he stayed at home and did practically nothing. He did not go to school as he could not walk the one hour to the school. He couldn’t play soccer which is a passion for every Guatemalan boy. For him and his mom, his situation felt hopeless.
Then in 2012, in the early days of the Chronic Patient Program, Vicente at age thirteen, met Dr. Michael and the ASOSAP nurses. They diagnosed his condition as asthma and started him on a treatment regime. All the medications and services were free. He and his mom just needed to faithfully follow the treatment regime and come monthly for the medication and checkups.
As time passed the transformation began. The monthly checkups brought good news. His airways were more open; he could breathe better since his blood carried more oxygen. Soon he didn’t tire or have difficulty breathing when walking. He could do the one-hour hike and started going to school. He started playing soccer and working in the field all day.
Vicente has been a part of the program for ten years now. Due to his condition, he had a late start to his schooling, but he is pushing forward. Now he is twenty-three years old and is in grade eleven, studying accounting and business administration. His asthma is well-controlled and isn’t stopping him from living a full life. The Chronic Patient Program was started for people like Vicente, to prevent death and bring quality of life to those who had no one else to turn to in the face of a chronic illness.
When Dr. Michael started working with ASOSAP in November of 2008, it was planned that he would work for two weeks each visit at the rural health posts ASOSAP was running. Specifically, he would:
- Train the two nurses on use and maintenance of the nebulizer
- Train the nurses in the blood glucose monitoring
- Give the nurses further training on starting IV’s, and wound assessment and care including suturing techniques
- See patients with chronic diseases such as hypertension, diabetes, epilepsy, asthma, depression, and prostatitis, put them on a treatment regime, supply their meds, and train the nurses how to supervise their care
It became clear that the need for a Chronic Patient Program was immense. Health care overall in these rural areas was minimal before ASOSAP arrived, and care to chronic patients was non-existent. The Ministry of Health does not provide ongoing care and medication to these patients. The cost of these medications is out of reach for villagers struggling to provide for their daily necessities. This service is so needed though. Without it, patients have very poor quality of life and some even die young from treatable conditions.
Dr. Michael and the ASOSAP staff worked together to form this program. At the start there were nine patients enrolled. The youngest patient was a ten-year-old boy with epilepsy; the oldest was a seventy-eight-year-old woman with high blood pressure. During each twice/year visit, Dr. Michael and ASOSAP staff formalized the program. Protocols outlining medication, treatment, and continued care were developed. Dr. Michael was always available for questions year-round and monitored each person during his visits to Guatemala. He committed to ensuring that these patients received the same standard of care as patients in the US. He provided the medications that were needed, always ensuring that there was sufficient supply for the patients.
The nurses were educated and mentored in caring for these patients. This is the backbone of the program, that the nurses are empowered and confident in providing excellent care to these patients. The nurses then educate patients on their conditions and the life-style changes that they need to make. This patient education is crucial, empowering them to take control of their lives. Equally important is the emotional support the nurses provide. Having a chronic diagnosis, being “not normal”, tends to isolate these patients in their communities. They learn how to navigate this socially and emotionally. A special connection has been created amongst these previously underserved patients.
Nurse Conzuelo, 2011
“In my heart I felt much gratitude to God for the work being done in communities. There are many who need us. Dr. Michael encourages me to continue studying my career and help those who have no access to health”
By 2011/2012, the program was growing and thriving. Fifteen patients were enrolled. Nurse Conzuelo, who was studying to be a professional nurse, was starting to be a leader amongst the nurses, especially in this program. Later on, it was discovered that Alvaro had a talent in the pharmacy area and he joined the team, ensuring that the patients received the correct medications and amounts. Nurses Miguel and Alicia have continued to grow in their abilities and Dr. Michael is always “close by” despite the physical distance. It is an amazing team, dedicated to serving these precious chronic patients.
The program has continued to grow with ninety patients currently enrolled. There have been many stories of new life for these patients.
Selena
Selena was nineteen-years-old when we met her. She came to the health post as she was having frequent serious seizures with two-hour bouts of losing consciousness. You can imagine how difficult this made life! She couldn’t help her mother around the house like other women. A fall, especially when cooking over an open fire, was very dangerous. She hardly left the house because of fear of having seizures when in public. Any dreams she had were on hold because of the seizures.
Thankfully Dr. Michael and the nurses knew what was going on. She was diagnosed with Epilepsy and enrolled in the Chronic Patient Program. She would need to take medication daily, but it would be possible to slowly recover her health and keep moving forward in her life. Dr. Michael and the ASOSAP nurses also educated her on how to take care of herself.
Her health became stable, but her chronic condition was still a heavy burden for her and her mother. They really had to take care of her health as even a common cold with a fever could bring on seizures. In her community, they lived under the stigma of being seen as unusual, “not normal” for having seizures.
Despite this, she fell in love and found a husband that didn’t think less of her because of her condition. It wasn’t easy though; much value is put on a Pokomchi woman as a mother. But, for young Selena, an unplanned pregnancy wouldn’t be safe. The medications she was taking are very dangerous to a fetus and not taking medication was very risky for Selena. She was advised to not get pregnant.
Life happened though and a year later she was expecting a child. It was a very worrisome and scary situation for the ASOSAP nurses caring for her. They wanted to ensure that her health and the health of her baby were stable. Thankfully she only had three seizures during her pregnancy. Dr. Michael and the nurses cared for her well. Dr. Michael brought an anti-seizure medication for her that would be safe for her baby. Selena’s mother was active in caring for her too. It was a great team effort. Her baby girl was born healthy. She is now two years old and is thriving. Selena’s health is stable as well. She has been taking her medication and taking care of herself. Without this program, Selena’s story would not be so fulfilling and happy.
We are humbled and thankful at how God brought this program together and raised up leaders to serve these patients. It is a joy and blessing to be called to serve His people in this way. We look forward to seeing how God continues to guide and equip us in this program and transform lives.
We thank you for partnering with us through your prayers, prayers for ASOSAP and for these patients.