HIV Care and Nutrition Program (UKUN)

The past two weeks here in Bagamoyo we continued our home-based care program with Mathilde; our Danish committed volunteer. I got sick first time with Malaria and was not able to work for four days. We got new referral of a family with a small sick child who we started to give our full support. Some of our patients were very sick and unfortunately we lost two lives L

 Updates on our patients:

Patient RMD:

Patient RMD has been our patient for over a month now. He is severely malnourished with military TB and newly diagnosed HIV infection. He has been suffering from pain to his hip and legs too. We finally managed to get X-ray done to his hips at Bagamoyo Hospital but this showed nothing and doctors think these pains are due to his TB. Doctors prescribed Diclofenac (pain relief) injections for few days, which I administered at his home. His mobility improved slightly after these and he is able to walk longer distances again. He is not eligible for ARVs due to his low Hb (haemoglobin). We have been supporting him with extra nutrition; porridge and peanut butter sandwiches but he does not seem to put on any weight. His brother says he often vomits after food. I gave him some anti-sickness tablets to take before meals. He is due to go back to hospital next week to have his Hb re-checked and see if he would finally be eligible for ARV treatment for HIV.

Patient SD:

Patient SD was a young man who had been suffering from distended abdomen and right swollen leg. Last week he lost his life due to liver cirrhosis. He had had a poor adherence to his HIV treatment in the past year. He had abdominal ultrasound scan that showed fluid in abdomen and enlarged spleen and liver cirrhosis. We took him for more investigation to private hospital in Dar Es Salaam where he had liver function test and hepatitis test done as they are not available here in Bagamoyo. Hepatitis test came back negative but his liver appeared very bad. We took him back to his doctors at Bagamoyo Hospital and they decided to admit him for more investigations. They prescribed diuretics to get rid of the fluids in his abdomen but this medicine was not available. We managed to get hold of it the next day and Mathilde went to take it to the hospital but only to find out that Saidi had been discharged home. He had been given a referral form to go to Muhimbili Hospital in Dar Es Salaam. He was in a lot of discomfort with his abdomen and was not able to eat for days. The next day I took him to Muhimbili and he was admitted to medical ward to have more investigations. Few days later I visited him and he had not been given any medicines or had any scans done. I purchased the diuretics (that the doctors finally prescribed) from outside pharmacy as they were not available at the hospital. He needed a lot of them (Spirinolactone) and they were not cheap. Saidi’s mother had moved to stay in Dar Es Salaam so that she could visit his son daily. I kept calling Saidi daily and he reported that he had only been given two tablets of ‘something’ every morning even the dose should have been six tablets due to the severity of his liver cirrhosis. Few days later I visited again and he was in coma. He had been like that for 24 hours. I spoke to the doctors and they told me he had had a scan that showed his liver had shrunk to a tiny size and was at the end state. He had a drip of saline and nasogastric tube for feeding. He was not alert anymore. His mother looked very worried and sad. Two days later he died early hours in the morning. Saidi was young man with a one year old child. His rapid decline in health came not only to us as a surprise but to himself too. This was a very sad strategy.

Patient SAL:

Our fairly new client SAL also lost her life at the same morning as SD. She had been diagnosed to have HIV only a month ago. She was suffering from severe malnutrition, urine infection and malaria. We were treating her at home with fluids and nutrition and at times it appeared that she was getting better. On her last visit to Bagamoyo Hospital doctors wanted to send her home with only multivitamins but I told them it was not enough and she was not getting any better. She was severely dehydrated, malnourished and had fevers. She then had blood and urine test done at the hospital and she was found still to have malaria. Salima was admitted to medical ward and given malaria medication and fluids via drip. Next day she was finding difficulties to breath but hospital could not give oxygen because there was no electric in Bagamoyo for two days and the oxygen machine had to be plucked in. The hospital did not have portable oxygen with a cylinder. This was so frustrating and I was trying to sit her up for a better breathing. Staff just stood there waiting for electric to come. We could wait for weeks, no generator at the hospital! Electric did not come back and she died early hours next morning. This was extremely sad. She left four young children behind who are now orphans. She was only in her early thirties. I attended Salima’s funeral and her mother approached me there. She wanted all Salima’s children to be tested quickly for HIV so that they could be treated if any of them were found positive. The family does not want another strategy like Salima. We arranged this with Charles and he promised to test them next Wednesday afternoon at their home.

Patient ZNB:

Zainabu our elderly HIV positive lady had got sick with a cough and was now treated with strong (and expensive) antibiotic for chest infection. Her third TB sample also came back negative. After a week I visited her but she was not home and either was her daughter Hadija (also HIV positive). Her neighbours reported that Zainabu was already feeling much better and had gone to work with Hadija. I told them to send my regards and to call me if she gets any problems. We did not hear from them last week.

Patient ZN:

ZN is HIV positive frail young lady with three young children. Her son Dotto of 8 years is also HIV positive. ZN has had compliance issues with HIV medications for years and is known to be big challenge for all people who have tried to help. Now she had been sick with PCP (pneumonia) and she has recovered well. She has put on over 7kg and is eating well! She had another hospital appointment where she went with Charles and Mathilde but she still was not given ARVs and they sent her home with more Septrin (antibiotic for PCP). She also reported having vaginal discharge and I sent her to the hospital to see a doctor. She was prescribed antibiotics for this.

The family is stigmatised and have no income so we keep supporting them with nutrition like porridge, beans and rice. It has also come to my knowledge that there are other issues with the children. I am looking for a nursery now that can take the four year old daughter and a school nearby for Dotto. ZN appears to have no control over her children; they do what they like and do not respect their mother. Dotto has not been taking his ARVs again. Their grandmother who they live with also takes no responsibility of their health.

New patient: Patient M and EV

Charles received a referral for a family of three. All of them; mother M, her husband and their daughter EV of 3 years are HIV positive. Evelyn was also diagnosed with TB last year and is still on treatment. She had not been taking the TB treatment for two weeks so there are compliance issues with the parents as they are responsible for Evelyn. Charles and Mathilde did a home visit and EV’s weight was found to be only 7,5kg. Mathilde took some nutrition for her; porridge, peanut butter and milk. Mother M was at home and she appeared well and in healthy weight. Her husband was at work. Few days later we visited again and this time Martha complained that she had had a cough for couple of days. Mathilde took her to the hospital next day and Martha gave sputum sample for TB. She was prescribed ChrystaPen injections to reduce coughing (that contain Penicillin), antibiotics and cough syrup. The injections were to be administered at the clinic near to her home. Her TB results should be ready by Monday. We will do frequent home visits to support EV with nutrition and make sure she finishes her TB treatment properly.

Patient CPT:

Mr. CPT is our long term patient who depends on us due to his poor mobility and stigma from his family. He has not been able to walk for years. He has a wheelchair and can now independently transfer from bed to chair as his arm muscles have grown. We keep doing exercises to his legs on our visits (twice per week) but they are weak still. Mathilde showered him and did his laundry last week by herself when I was suffering from Malaria, which was a great effort J We keep bringing him 6 litres of clean drinking water once per week and extra nutrition twice per week. His family are still the same; not willing to help at all and often lets him go hungry. Those visits we make are his lifeline and he would not get out of his room or to have a wash without us. If there were nursing homes in Tanzania I would pay him to be taken care of by some lovely people who would spoil him every day. He deserves better.

Patient ABD our orphan boy who started school a month ago came to visit us in the weekend. He was very happy to see all his friends. He stayed at our office for the weekend and Monday he will go back to school after picking up his ARV medications from Bagamoyo Hospital. He complained that they were still not teaching him English but he was hopeful that they would start soon.

Mathilde said her goodbyes to us last Sunday. It was great to have her here again. For the next few weeks there will be no volunteers until March sometime. Luckily I received a lovely gift from ex- volunteer Kirstine; a bicycle! This has been a great help for home visits to patients; much less time spent on travelling and more time with patients- super!