HIV Care and Nutrition Program (UKUN)

 
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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!

 

The new year started with a busy schedule for home care. We had some sick patients and some new referrals. The Danish volunteers continued their hard work and organized a testing for school children. It was also goodbyes to Lina, Nicole and Kathrine. They continued their trip to Zanzibar! Patient ABD finally started school and has settled in fine.

HIV Testing and screening:

Our Danish volunteers Lina, Nicole and Kathrine organized testing for BACCA pre-school children at our office.

One three year old girl Sara was found HIV positive. Charles together with the girls went for a follow up meeting and counselling with Sara’s mother Augusta. Augusta told them that the child had been diagnosed since December 2012 but she was too afraid to enrol her to CTC (HIV clinic at the hospital) due to stigma at home. She also reports that her older daughter Suzy of 11 years is not positive. Charles will make another follow up meeting and help to enrol them to CTC ‘in a secret.’ Otherwise the child appears in good health.

 

Patient ABD:

Patient ABD finally started GOIG School on the 7th January! He got a room that was shared with another student until his room will get cleaned for him. We visited him with Chanzi and Mathilde two weeks after starting school and Abdallah seemed happy but little home sick. He had been learning to make rugs and had already finished two of them. We were so proud of him and he taught us all how to make them. His room was still not ready and they were not teaching him English yet but things happen ‘eventually’ here in Tanzania. Patience is a key skill. He is very keen to learn English. Unfortunately the school could only promise to keep him until end of March (3 months) because they did not get funding from Finland this year. They might have enough funds to keep him for the full year but they could not guarantee that. In that case he has to continue next year, their new financial year. Patient ABD appears in good health. We managed to get all his meals and pocket money sponsored from donors from Finland. Next month he will come to visit us in Bagamoyo and attend to his hospital appointment to get more medicines.

 

 Patient RMD:

Patient RMD, our fairly new patient was discharged from the hospital. Earlier he had been diagnosed with Miliary TB and Malaria. He is only 41kg and appears about 180cm tall! He also has painful hips. We visited him at home couple of times; he has slightly low blood pressure 90/70 and he spikes temperatures. We gave Paracetamol, which he takes regularly. He is eating now three meals a day and mobilising around the house for short distances. We brought him a walker/zimmer frame to help with mobilising. We accompanied him to his hospital appointment last Monday the 20th to the TB ward. His family is always a great support and couple of the family members came too. We requested an X-ray to his hips but there were no doctors available and we were told to come back the following Monday. He received more TB medications. We also have been supporting with peanut butter sandwiches to bring his weight up. He is recovering well and is in good spirits.

 

Patient ZNB:

Patient ZNB, our elderly HIV positive lady was treated for stomach ulcers and had physiotherapy last month. She had fully recovered. Now we received information from her daughter that she was sick again. I went for a home visit and discovered a bed sore to her upper buttock. I cleaned and dressed it with some medicine dressing and taught her daughter Hadija how to redress it. She did not complain with other problems. I advised good diet and pressure relief for a fast recovery. Few days later I went back with Mathilde and redressed the wound that had almost fully healed. She complained a bad chest and a cough. We took her to the hospital and she gave sputum sample for TB. Next morning I collected the second sample and took it to the hospital lab. We collected results after few days and they were negative. We brought her back to Bagamoyo Hospital to have a chest X-ray, which showed infection. Doctors also wanted another TB sample as the previous ones had been ‘saliva’ like and they were still suspecting this would be TB. We collected the proper one and handed it in to the lab. Patient ZNB was prescribed strong antibiotics for 7 days and was sent home. One of the doctors wanted to admit her to the hospital for proper investigation but she did not fit the criteria. She was too ‘well’ (able to eat and drink). Next week we will collect the 3rd sample result and visit her at home.

 

Patient SD

Patient SD our new patient who had been sick with diarrhoea and swollen right leg and scrotum was discharged home from Bgamoyo Hospital. He had spent over a week there. We visited him at home with Mathilde and his diarrhoea had resolved. They had told him to come back the week after 21st Jan for surgery to his right scrotum (hernia). His physiological observations were stable but his abdomen appeared much distended. I did abdominal examination and could not find anything from that. He had no pain either. His right leg was swollen and he reported to have had that problem for five years now. He had used intravenous drugs in the past and he reports that this is how had got infected with HIV. Now he had been ‘clean’ for 9 years already. We will go with him next week to the hospital and try to get further investigations done. Saidi is full of hope of getting better as he is young (34yrs) has a one year old daughter too.

 

Patient Z and her children:

Patient Z is our frail little HIV positive lady who has three children and the eldest is unfortunately HIV positive too. She has had compliance issues for years with taking her medication and had got herself into a very bad state. She has now been on treatment for PCP (Pneumonia common with HIV patients) but still has no ARVs for HIV. She finally had her CD4 checked last week and it was 97. The CD4 machine had not been working for a couple of weeks at the hospital that possibly had terrible outcomes for several patients. Without CD4 results patients are not given treatment for HIV.

We have been visiting patient Z and her children regularly at home and we bring food as they have no income. We had a long discussion with the doctors about her adherence and I agreed to be her treatment supporter as her mother kept refusing to help. Z’s mother who lives with her does not want to do it and even refuses to come to the hospital with her. Charles went to see her at home and Zena’s mother finally agreed to come to counselling session with her to the hospital and this was successful.   They will need another session. Hopefully after that she can start ARV treatment. When asked, she was not very keen to start the treatment and we cannot understand why she is like that as she has three children to look after. Her son Dotto was given his ARV treatment for a week but we discovered that he had not been taking it. Mathilde had a good talk with the family with more body language than words J but perhaps they have understood now the importance of him taking them. This family is a big challenge for us but we have big hope for them for the sake of the three young children.

 

New patient: SAL

Last week whilst at the hospital with Ramadhani, I received a new referral from CTC. This 37 year old beautiful lady called Salima was very frail and ill looking. She had already seen a doctor but was not given any medicine. Her weight was only 40kg and height 160cm. She had no temperature now but reported to have temperature every night for several days. Salima was only diagnosed with HIV few weeks ago and now had to wait for CD4 results and counselling. Adam who works at the CTC asked doctors to see her again and they agreed. This time she was sent to the labs for malaria test and urine test. The doctor also gave her two weeks supply of Plump Nut Bars to gain weight rapidly. She has four children and none of them been tested for HIV. She appears to have a nice family for support.

We visited her at home the next day with Mathilde and Helmi (visitor from Finland) to check how she was doing and she had been diagnosed with Malaria and UTI (urine infection). She had not collected her Malaria medications because hospital did not have them and she did not have enough money to purchase them outside. We went to collect these (cost £1.50), brought ORS, water, peanut butter sandwich and Paracetamol. Her blood pressure was low 80/70 and we encouraged to drink plenty of fluids. She stated that she only eats twice a day and mainly porridge. I asked if it was OK to test her children for HIV and she said ‘we can talk about it’. Two days later I visited her again and her temperature was 41 degrees but her blood pressure had come up to 110/80. She was due to go to the hospital for her CD4 results and she went with her mum. Mathilde and Charles met them at the hospital. After hospital Charles and Mathilde went to Salima’s home to test her children. Only one child was home and she cried a lot for the needle. The result was unknown and she needs to be tested again unfortunately. We will make regular visits to her until she recovers. Next week she will have another hospital appointment. This family will need a lot of support and we hope she will fully recover.

New patient: SWU

SWU, 34 year old single lady came to our office complaining breathlessness and weakness to her limbs.  She was diagnosed with HIV a year ago (Jan 2013). She has no partner or children and unfortunately she had lost a child 1996 when she was only 17 years old. She lives alone close to our office.

She appeared very lethargic. Together with our Danish volunteers we measured her physiological observations were within normal range but she got very breathless on exertion. Her weight was 51kg and she was slightly underweight. Luckily there was a doctor at the office and he listened to her chest and said it was clear. He advised we take her to the hospital for a chest X-ray and assessment. We did this straight away and she got antibiotics for chest infection. She also takes Septrin and Vitamin B. Her CD4 is still high so she does not need ARVs. Her Hb was only 8.3 and she received advice for iron rich diet. Now after two weeks she has recovered well. We did couple of home visits and took some peanut butter sandwiches to give her nutritional support. She is very grateful for our support and says that now she knows we are here very close to her home if she needs any help.

 

Lina, Nicole and Kathrine took us; me, Mathilde and Charles, for a lovely meal to say goodbyes. They had worked very hard for the past 4 weeks and had been great asset to our team. They also together with Mathilde organized a fundraising project of selling locally made colourful bags for friends and family in Denmark. They also donated mosquito nets and lots of medical supplies to us. Mr Captain got a new pillow and a mosquito net and was super happy. I hope all the best for the future for these girls and our door will be always open to them.

Next week we will have a lot of hospital appointments with our patients. Mathilde and I will have to stretch all our arms and legs to reach to all the work that lies ahead. Bring on the challenge!!

 

In the last two weeks I had my first Christmas and New Year here at Bagamoyo. Work with UKUN/PHI kept us busy over this festive season. We were happy to receive some nice donations that enabled us to give Christmas gifts to our clients who live in a poverty ridden lives. We made several visits to Bagamoyo Hospital with current patients and got referral for a new sick patient too. One patient we lost due to unfortunate circumtances.

We were sad to say our goodbyes for a fantastic volunteer Bjarne who had been part of our team for couple of weeks. At New Year Mathilde arrived from Denmark for the second time to volunteer with us. She together with her friend Sophie had helped me to restart our home-based care program last year and to refurbish the new UKUN/PHI office.

It was so nice to have her back again. We also got a nice surprise of three more Danish volunteers; Kathrine and twins Lina and Nicole that joined our team. Both of them and Mathilde will be volunteering with us for a month. They are all starting studies in health care. Nice start for the New year of having lovely volunteers and a big workforce!

Christmas:

We were so happy to receive some nice Christmas donations that my father had collected from his friends. Christmas truly is a time of giving and with that on our minds I, Bjarne and Chanzi dressed as elfs on Christmas Eve and took gifts to our patients around Bagamoyo! We bought things like soap, food, clothes and toothbrushes and wrapped them into lovely presents. I think the joy we saw on those faces was definately the best Christmas gift we could ever receive. Unfortunately not all of the patients were well that day but we managed to keep the spirits high till the last patient who was Captain. He lives in a very bad housing with awful family who does not care for him at all. We had bought him a big meat pie that he bit into straight away. All in all the day was a great success and I hope I will be able do it again next year and the years to follow!

 Updates on patients:

Patient RMD:

Our fairly new patient RMD had denied his diagnoses of having HIV infection for a half a year and now he was very sick. His Hb (Hemoglobin) was too low 6.9 to start medication for HIV even his CD4 was only 144. We went back to his home with Bjarne to take him to his hospital appointment to recheck his Hb only to find him in an extremely bad state. He was very sick with severe dehydration and he had been vomiting for days. He was not able to mobilise anymore and was in alot of pain. Family called a taxi and after great difficulty of transferring him into the car we took him to Bagamoyo Hospital ’Emergency Department’ (which just a clinic with a one doctor there). We went direct to the doctor’s room passing vast number of patients who probably had been queuing there for hours. The doctor looked at him without any physical assessment and wrote a plan and prescriptions and sent us to male medical ward. We left Ramadhani and his family there to wait for the doctor to see him. He is lucky to have a great family; 3 brothers and a sister who are very caring for him. They later diagnosed Malaria and Miliary TB (Tuberculosis all over the body) and he was put on IV fluids, and Nasogastric tube was inserted through his nose to feed him and give medications. After few days he was moved to TB ward. He could not be moved there before because there was no nurse to take care of him. At the TB ward the care was much better and he recovered faster and started eating again. Unfortunately his Christmas and New Year ware spent in the hospital. After a week and a half he was discharged home. We will do a home visit next week. We can only hope that this young man will fully recover and understand the importance of taking charge of his own destiny by eccepting his illness and taking care of himself with support from us and his family.

 

Patient JJ:

We had been visiting patient JJ over a month monitoring her blood pressure regularly as she had been started on antihypertensives to lower her blood pressure. Unfortunately she lost her life this Christmas. Patient JJ had no family to take care of her due to stigma of HIV virus she had. Oliva, a local lady took care of her as patient JJ was not able to mobilise or to wash herself. On Christmas Eve I arrived to her house with volunteers Bjarne and Chanzi to give gifts only to find that she had had a stroke few days ago but Oliva had not informed us or Mama Kizenga (charge nurse for home-based care in Bagamoyo) or taken Juliana to the hospital. This was too late now as the critical window to treat her is immediately after one has had a stroke. That was something that we knew with Bjarne having experience in health care but we did not feel that we knew enough to make decisions of planning her care. She did not appear much different than she normally was as she had been a bed ridden patient for a long time but she had a ’droop’ in her face that is a typical sign of someone who had suffered from a stroke. We wanted to take her still to the hospital but her family and Oliva refused. They said someone needs to sleep there with her due to her anxiety but noone was willing to do this except Oliva but not until the next Monday (6 days away). We felt so helpless in this situation. We contacted Mama Kizenga if she would see her or get a doctor to see her at home and she said she would do so. We left to continue our Christmas round not knowing what would happen to her. Next day, Christmas Day, I called Mama Kizenga again and she had not been to see her but said she is talking to Juliana’s family to help her. Boxing Day I called her again and asked her to inform the family that the next day we would take her to Muhimbili Hospital in Dar es Salaam so she could have scan done to her head. Patient JJ would have to have family or friend to escort or have some relatives in Dar that can come to take care of her. I was told that if you take patients to the Muhimbili Hospital you need to have family to take care of them and visit daily to bring food, do laundry and help with hygiene as the hospital staff will not help you. Mama Kizenga said she would ask the family again. In the meantime we were trying to see if there were any doctors in Bagamoyo who would do home visits but we did not find any. Mobile doctors would be great to have here in Bagamoyo where people are having great difficulties to access health care. That evening I received a phone call from Oliva that JJ had passed away. That was extremely sad. I felt a big failure from our part, especially from myself and now it was too late. Maybe she is in a better place away from all the stigma she had to experience. Stigma for HIV exists in large number of families in Bagamoyo and can be only be challenged with more education and awareness.

  Patient Z  and her children:

Patient Z, our frail lady, who was diagnosed with PCP (pneumonia common with HIV patients) has been on the treatment (Septrin) for it now for a couple of weeks and she feels much better. We have been visiting her regularly and given her and her three children food as they have no income. She does not seem very keen to start the HIV treatment and we cannot understand why she is like that as she has three children to look after and one of them is also HIV positive. She appears depressed and needs councelling. Doctors told us that she has a history of not attending her clinis appointments and not taking medications properly.

She had another appointment to the hospital to check her Hb (Hemoglobin) levels and to check her CD4 count. Charles took her at New Year’s Eve. Her Hb was low; 7.4 and unfortunately the CD4 machine was not in working order. Without CD4 results she cannot start ARV treatment. After that results it will be councelling. Last Friday, few days later we went to to collect her to the hospital again but she was not home. We will try again next Monday.

 

New patient: SN

Charles from the office got referral for a new patient SN. He was informed that SN was very sick and should be admitted to Bagamoyo Hospital. Whilst at the hospital with our other client we found that SN had already been admitted and I and Mathilde visited him in a male medical ward. We did his physiological observations that were all within normal range. He complained having severe diarrhoea for four days and swollen painful right testicle.

Patient SN has been diagnosed with HIV sonce 2007 when he started on ARVs. Last year he missed appointments for a period of nine months and he could not really tell why when we asked him. This is probably the reason why he is so sick now. His last CD4 was only 38 and it was done three months ago.

We collected his medications from the hospital pharmacy; ORSs, Metrodinazole, Septrin, but Zincoxide was not available. We went to the pharmacy in town but they did not have it there either. He appeared dehydrated and malnourished. He was given IV fluids. We will visit him frequently to bring water, food and to liaise with doctors to speed up his recovery. He is waiting for a surgery to a right testicle that will be done in Bagamoyo Hospital but the doctors had told him he has to pay. Charles promised to have a word with the surgeons about that. He also has a swollen painful right leg with few lesions in it. He seems hopeful to get well again. He has a wife and a one year old daughter but they do not live with him. His wife is also HIV positive but the child will be tested later when she is 18 months old.

Future Plans:

 Next week we are looking forward to taking our orphan boy Abdallah to school in Dar Es Salaam where he should stay for a year. We will continue home-based care with our great team of Danish volunteers. We will work on the care plans and patient profiles; it all needs updating after a few busy weeks with the patients. Hopefully hospital gets their CD4 machine working so people can start treatment for HIV before it is too late and lives will be lost.

 The past two weeks at home-based care in Bagamoyo were busy with new and old patients. Bjarne; a Swedish student nurse joined our team for couple of weeks, which was great help for us. Kirstine our Danish volunteer said her goodbyes to us last week. She was a great asset to us and will be missed. Unfortunately sad news was delivered to us in the first week; our long term patient Mariam had passed away. We also discovered that Hadija was suffering from Malaria as well as Abdallah. People say that this is the worst season for Malaria as it rains often and mosquitoes love it. Patient ZZ, a new patient of us was admitted to the hospital and spent a week there to recover. We also received a new referral from CTC, a newly diagnosed HIV but already a very sick patient; RSM.

Update on patients:

Patient JJ:

Juliana is our fairly new patient (one month now) who is suffering from high BP (blood pressure) and reduced mobility. We have been monitoring her blood pressure every few days since she was started on BP medication couple of weeks ago. It all started well but then her BP was raised again last week. We added another BP medication that we had omitted the week before. We will have to wait and see if this will work and keep monitoring her. We cannot start physiotherapy until her BP is stable. She lives in a very basic house, sleeps on a stone floor with a very thin mattress. The room is too hot but she is not mobile to go out and she is a quite a large lady to transfer. It makes as really sad that all her family had abandoned her. However she is very lucky to have Oliva, a local mama who feeds and washes her every day.  

Patient AH:

Our 18 year old orphan boy AH called me on Sunday morning and told me he was sick. First I thought maybe he was hungry as Charles had gone away from the office for few days. I found him at the office with a fever and a headache. I took him to the local clinic in town (instead of queuing all day at the hospital lab) to rule out Malaria first but unfortunately it came back positive. He was only suffering from Malaria two weeks earlier. He got medications again and I took him back to the office, collected his lunch and advised to drink lots of water. He told me he has been sleeping at the office now for a while because his family circumstances were bad (again). Unfortunately a big stigma exists in his auntie’s house where he is supposed stay since his parents and grandmother died. He got HIV in birth from his mother and has suffered twice from TB (Tuberculosis) too. He has been very unlucky. There is no protection from mosquitoes in the office and I gave him my mosquito repellent cream. Very soon (January) he will start his school in Mbezi (Dar Es Salaam) and hopefully this can be a new hope for him for a better life. We will need to find him a clinic near to the school where he can pick up his HIV medication monthly and he needs to take responsibility for it.

Patient MP:

Patient MP our long term palliative care patient who had been in the last stage of AIDS for years now passed away at her home. It had been expected for a while now. She had almost no quality of life left since she had a stroke five years ago and her husband had died two years ago too. We hope she is in peace now. I and Bjarne attended to her funeral. There were a lot of people sitting on ‘mkekas’ (big floor rugs made of basket) and food as a typical funeral here. Most funerals last three days here in Bagamoyo. All the men had gone to bury the body. Her daughters were very sad and mourning. We showed our respects and left. It will be strange not having Mariam around anymore as I had cared for her almost a one year.

Patient CP:

Bjarne and I took patient CP to his monthly appointment to hospital CTC (Care and Treatment Clinic). Patient CP is wheelchair dependent and needs transport every month. He received good news as his CD4 count had gone up by one hundred to 461 in six months! We were all really happy. He has grown physically stronger in a year and is in much better spirits too. We continue to bring him extra snacks and clean drinking water. Big stigma exists in his family and living surroundings and he gets no help at all. None of the family members wants to co-operate with us either. We do the best we can to maintain some quality to his life. We continue to give him two weekly showers, laundry and clean his room. He is such a character and loves volunteers visiting but the same time all volunteers get fond of him too.

Patient ZZ:

Patient ZZ our HIV positive very frail lady has had a bad chest for a while and we were suspecting TB of course. Hospital had lost her sputum results so I took two new samples from her to the hospital. After two days I picked up the results and they came back negative. I was very surprised. The lab told me she can still have TB as it doesn’t necessarily show for HIV patients or if she has extra pulmonary TB. We took her to the hospital with Bjarne last Tuesday. By this time she was very weak and kept couching and producing sputum. Zena’s mother stayed home with her three children.

Patient ZZ had an X-ray done first that Mr. Charles had booked for her the day before. After this we went to see doctors-all 3 of them! They told us she did not have TB, it was PCP (Pneumocystis Pneumonia), which is common pneumonia for people with weak immune system like HIV patients. Patient ZZ's PCP was severe. She was admitted to the female medical ward. We were told the treatment should be IV Septrin but it was very expensive and not even available here so she would have to take it orally 9 tablets a day. She was also given fluids with glucose and strong antibiotics injections for 5 days, which were not available and we had to purchase them from the pharmacy in town. She had oral thrush too and found it hard to eat. She was prescribed oral gel Miconazole for that, which we purchased from the pharmacy in town again. We visited her for three daysand also brought food to her home for her three children. On Sunday, when we went to visit her again she had already been discharged home.

We will visit her at home next week and hope she is better. Doctors told us she has few years’ history of not being compliant with HIV treatment and doctors are reluctant to give her again. She has not always attended her appointments and has no family support. Her mother refuses to come to see the doctors together with Zena. Also because of this doctors won’t give her the treatment for HIV. Her next appointment will be at New Years Eve. I have asked our boss Mr. Charles to go with her for support and counselling. She needs to start treatment if she wants to live and take care of her three children, which one of them 8 year old Dotto is unfortunately also HIV positive. Dotto has his appointment on the same day with patient ZZ.

 New enrolled patient:

Patient RSM:

Last Tuesday a lady came to our office and asked for me. She had been told in CTC to find me for her sick brother. We went for a home visit together with Bjarne to assess the patient.

Patient RSM is 38 year old man who was diagnosed with HIV last July when he started to feel sick. He refused to accept these result and went to see a witch doctor. Months later he got really sick and with the encouragement of his family he was enrolled to CTC to seek treatment. This was early November this year (last month). He was started on Septrin (antibiotic) only. Then a week later his CD4 was checked and he waited a week for the results. The CD4 was only 144. By this time he was very sick. His Haemoglobin (Hb) was very low 6.9, and to start HIV treatment it must be 8 or above. Doctors sent him home and gave him medicines to boost his Hb (Hemovit), Paracetamol, B vitamin and multivitamins and told him to come back a week later.

We arrived at his house the day after he had been to the hospital. We found this tall man who looked very malnourished. His family was there; 2 brothers and a one sister who all seemed really friendly and caring for their brother. Ramadhani the patient told us he has been eating. He told us he was still walking but only short distances. He was breathless. We checked his physiological observations; BP 90/70, heart rate 110bpm, respiration rate 30 and temperature 37,5 degrees. He had no cough and there were no crackles when listening to his chest. He reported no diarrhoea or any other problems with elimination. We advised him and his family to relieve his pressure areas with changing position and using pillows. We gave advice on iron rich diet to boost his Hb quicker and told him to drink plenty. His next appointment will be next Monday 23dr of December and we will go with him to the hospital. We hope his Hb will be increased so he can start on HIV medication.  

Patient HD:

Our blind HIV patient HD got sick with flu and tested positive for Malaria. She received treatment and we visited her at home with volunteers Kirstine and Bjarne. After couple of days she was already better and back to her cheerful self.

It was Kirstine’s last week and she took us for a nice meal including Abdallah. Kirstine taught me how to update the patient CD4 graphs that she had created. We are so grateful for all the hard work she has put in and will miss her a lot!

Next week is Christmas and we have great plans to bring some Christmas spirits to our patient in Bagamoyo. My father did a Christmas collection from his friends to our patients and the total came over 300 euros! Christmas is surely the time for giving.

The past two weeks in Bagamoyo I continued working with volunteer Kirstine. I got flu for few days but luckily it was not serious illness. We had a great success at World HIV Day and continued home-based care with our old and some new patients.

Kirstine created patient record system with Excel program to record all the people who come for testing at the office. She also collected all history of CD4 counts from our home-based care patients and we weighed most patients with new scales we purchased (some of the immobile patients we were not able to weigh). From the information she created a graph so we can see and monitor the progress of our patients. This is something that was planned long time ago but it was Kirstine finally who followed it through and she made a great success.

World HIV Day 1st of December was a great success too. Godfrey came from Dar to help us and together with Charles set up a spot to the middle of the bus station and test people for HIV. Chanzi also gave a hand with setting up posters and we had lots of stickers and red ribbons that were donated from UK based HIV Charity through Debbie; our faithful sponsor and volunteer from the UK. 54 people, young and old were tested on that day! One older man tested positive and was referred to CTC at the hospital for a follow up and more counselling. He had a strange reaction to his results; he was happy and said ‘It is OK because now there is good treatment for it.

Couple of weeks ago Kirstine organized to have testing for pre- school children at our UKUN/PHI office. Two groups of 10 came in two different days. No one was found positive. This was a great idea and something we should expand to the other schools at Bagamoyo too.

Update of patients:

Patient G from Morogoro family:

We have been visiting patient G weekly and every time we see him he looks healthier and he is getting stronger. He had his hospital appointment for refill of ARV medication. He still reports dizziness and doctors told him he has a low blood pressure. We have been checking it ever since and it is within normal range. Otherwise he has no other problems. He has gained even more weight and his mobility is almost back to normal. I gave him multivitamins for a month and we give him porridge and fruit every week. He is missing his family greatly but soon he will be fully recovered and go back home to his wife and baby boy Michael. Hospital still has not received results for HIV test from the little boy Michael. This sample was taken about two months ago now and sent to Muhimbili Dar Es Salaam. I wonder if we will ever get them. I will attend his next hospital appointment with him on New Year ’s Eve.

Patient Z and her daughter Hadija we visited both weeks but found that they were not home. Apparently Hadija works now near the beach every day and her mother Patient Z had gone to the farm. Last time we saw them was a month ago and luckily Patient Z had recovered from her stomach ulcers and had got back her mobility. We are not concerned and they have our number if they need us.

Patient A & Patient H - Tanga family

We visited Amina and her brother H to talk and help about plan for future and getting out of poverty. Their health is stable now and patient A continues her physiotherapy with exercises and walks with her frame. Hamisi has fully recovered from his operation and we helped to restart his cigarette business few weeks ago. Now he reports that is going OK. Patient A had been keen for a long time to sell something too outside her house and we supported her with bagging and selling bags of charcoal. A big bag of charcoal to start the business with cost £12. If this business works out well for her we will increase the business and add firewood too to sell. Due to her mobility she can only sit down (and walk short distances with a frame) so selling things outside works well for her. They are both very grateful of our support and we will review them next week.

 

Patient MP:

Patient MP, our palliative care patient was supposed to have her monthly hospital appointment on the 6th of December but family did not want to take her that day. This has been continuous problem the whole year. We visited them with Kirstine later that afternoon to assess her condition only to find her in a very ill health. Patient MP appeared to have had lost weight again after last hospital admission (she had Meningitis), which was last month. Family reported that she is only eating very small amounts and not taking medication. In my opinion she looked like she did not have many days left in this world. Family said they did not want to take her to the hospital again for feeding with nasogastric tube. I understood their decision and said it was up to them. She has been on this stage of ‘suffering’ for many years now (stage 4 AIDS). Her eyes looked almost black and had no ‘life’ in them. She was not responding to voice or pain. I held her hand and wished that she would feel no suffering. She did not look agitated or uncomfortable. Family had already spoken to Patient MP's sister Mama Kizenga and she had told them that patient MP has suffered for too long. Her daughter asked me why is she like this and if she will die now. I told them I think patient MP is tired of life. I told them to call me if they get any worries. We went back few days later and MP looked a little better again. She did not look like she was in any pain or was uncomfortable. She had little temperature so we gave her liquid Paracetamol, which she swallowed. That day her daughter told me that she had had porridge and juice. We will visit every few days to assess her comfortability. I feel really sad as I have grown very close to her this year but I know that she has almost no quality of life. The smiles have now gone.

 

Patient ZM Ramadhani and her children:

This frail 29 year old lady called Zena came to our office few weeks ago with her three children. Patient ZM and Ramadhani Dotto her eldest son of 8 years are HIV positive. They had not been taken medications ARVs because of lack of support and nutrition. Now the hospital gave them to restart again. The family fled from their home a week ago due to stigma. Now they stay in another small house with two rooms.

We went for a home visit last Friday to assess their needs. Patient ZM is very malnourished, 35kg only. She has been coughing blood, has diarrhoea, stomach pain and has ulcers in her mouth. She was dehydrated, her blood pressure was low 90/70, heart rate 120bpm and temperature 38 degrees. She was also breathless. Two weeks ago she went to Bagamoyo Hospital for a TB sputum test and they gave her medicines for her mouth. Now she went to get her result but they could not find them. We gave her Paracetamol and promised to go to the hospital to find her results. Her last CD4 count was done one year ago and it was high 1291. Ten months before that it was only 195. It must be very low now too. She really needs a new one done. Her son’s last CD4 count was done one year ago too and it was 1282. They have both attended their monthly hospital appointments regularly but why has the CD4 not been checked. This is a big failure from the hospital. They both have their next clinic appointment at New Year’s Eve 31/12/2013 and I will make sure to go with them to get it done.

One of the children at their house was lying on the floor holding his stomach and saying he was hungry. All the children appeared small but not as malnourished as their mother Zena. We gave them 1kg of porridge and sugar and told the little boy to get up and start cooking it. He started to make a fire inside the room with firewood and washed a pan for cooking. They do not have a local cooker even. One of the children asked for a bicycle. They have no food but of course those things can seem more important to a child. They have no money or income. They were waiting for Zena’s mother to return in the evening to bring food and cook for them. On Sunday I went back with Chanzi and took lots of foods for them; bananas, rice, potatoes, vegetables and drinking water. First thing we need to do on Monday is to find her TB results so she can start a treatment if it comes back positive.

 

New Patient JJ:

We got our first referral from CTC with our referral forms we created. This was Patient JJ, 56 year old lady who is HIV positive. She was referred to us for physiotherapy and transport to hospital. Charles from our office said he knows her and this lady apparently cries a lot.

I went for a home visit with Kirstine last Friday morning. A local lady who is taking care of her took us there. Shew told us that JJ's family had abandoned her so she was alone otherwise. We found her lying on the floor and she started to cry when we came. She was not able to walk and had lost her mobility about one year ago. She was able to speak a little through her tears and said her legs were painful. She seemed anxious too.

We checked her physiological observations and her blood pressure was high 170/120. I checked her other arm and it was even higher 170/130. Her pulse was 120bpm and respiration 28bpm. She had no temperature. She had been to the hospital last September (2.5 months ago) but they had not checked her blood pressure. She was not on ARV medication; in fact the only medication she had was Vitamin B tablets. Her CD4 count was done September too and was 451. We decided to take her to the hospital to see a doctor for her blood pressure. We had to carry her into the bajaji (three wheeled small car) and she was not light! Once we arrived at the hospital and got through to the doctor he did not seem happy because it was not her ‘appointment date’. I explained about her blood pressure and he asked me to check again there at the hospital. It was still high. Doctor asked questions about her history and started to be helpful. She was started on two different blood pressure tablets, Diazepam for anxiety and Diclofenac for pain. Doctor told me to go to check her blood pressure the next day. We took her home and explained about her medications. I went back next day and her blood pressure had dropped to 140/80.

She appeared tired but that was possibly due to having been started on Diazepam the night before. I omitted one of the blood pressure medications as the doctor had advised and she continued with the other. We will monitor her every few days at first. When her blood pressure becomes stable we can assess her mobility and possibly start physiotherapy.

 

Next week we will be busy with new patients and luckily we have a new volunteer Bjarne to join us. He is a student nurse from Sweden and will be with us for ten days. Kirstine has another two weeks left with us. It will be my first Christmas here in Tanzania in two weeks time and I am looking forward to it!

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Map of HIV Care and Nutrition Program (UKUN)