Santa Rosa de Copan, Honduras
This is the update on Edin Ayuri. It's longer than most, but worth reading to the end.
I arrived in Honduras on Monday and made it up to Santa Rosa on Tuesday. This was the 2nd time I had seen Ayuri since he first became sick. If you don't know who Ayuri (Eddy) is, then please click here to read his story before proceeding. The picture to the left is of Ayuri with his fiancée. To be a better fund-raiser, I should have taken pictures that showed him when I left him on Friday... but I have too much respect for him to do it.
Last time I saw him in November, he was supposedly recovering from Hepatitis. Wrong. I thought he was a ghost last time I saw him. This time I saw a young man who has gone on a liquid diet because eating normal food tends to cut his gums which then bleed all night - making it impossible to sleep without choking on his own blood. But ask him how he's doing and he answers "tranquilo" with a smile (tranquil or fine). I informed him that I was going to take him to Tegucigalpa the next day as we had an appointment at the cancer center early Wednesday morning and the appointment was about 6.5 hours away by car. It used to be more, but since the current president is from our region, they've improved a back road through the mountains that cuts the trip.
We went out to the Moses Project for the night and he came back into Santa Rosa early in the morning with Daisy to get an injection of Vitamin K (whatever that is) to reduce the bleeding. They had arranged a donor to transfer a pint of blood in the morning but I asked them not to so that the tests in Teguc would reflect his blood and condition as-is and not as reflecting somebody else's blood. We made our way to Comayagua in the afternoon and met up with a doctor there (my wife's brother) who had arranged the appointment in the cancer center. We arranged to leave for Teguc at 6am on Thursday and true to his word we set off early to join the traffic nightmare that is Teguc.
At the Cancer Center Emma Romero de Callejas I heard Ayuri recount his story to the first doctor that established his case file before the specialist was to see him:
- "I first developed a fever in late September, but after taking some aspirin and sleeping for a day, I felt better and returned to work with the animals. I didn't see any doctor, but we figured maybe I had caught dengue.
- A week or two later, my fever returned and I felt really week. Daisy took me in to a doctor and after some tests, they gave me some fluids by IV and said I had hepatitis. After a couple weeks, I started to feel good again and returned to working. I felt pretty good for most of November and up until December 19.
- December 19 I started to bleed from my nose and it didn't want to stop. I went home to be with my family for a bit for Christmas, but the bleeding continued and a fever with chills came on a day or two later. By the 24th (when Hondurans celebrate Christmas), my mom finally phoned Daisy that somehow I needed help but my family doesn't have money to get it.
- December 24th my family helped me to get to Santa Rosa and Daisy took me to the Hospital del Occidente. They put me in a ward where I lay watching the rats run around the beds in the big open room. They put 14 or 15 bags of fluid into me by IV and took blood samples and an X-Ray. Two days later they said I had to go to the main hospital in San Pedro Sula (3 hrs away) to get more advanced blood tests because they figured out that I wasn't fighting hepatitis.
- December 26 I was taken in the Red Cross ambulance to the Hospital Catarino Rivas in San Pedro where they did more blood tests and I received more fluids and antibiotics.
- December 29th they did a biopsy. They told me I would follow this other gentleman and said they had no anesthesia. I turned my head away as they inserted the small needle first and then this giant horse needle into this guy to take the sample of cells from his bone marrow. Without looking, I could hear that it hurt! And it did. I didn't watch them do it to me either, but the doctor showed me the "horse needle" that they use to collect the sample... My dad was there with me and he had to buy everything for the process: the syringes, even the glass plates they needed for the sample analysis
- December 30th, after reviewing their results, they said it was nothing complicated and gave me a list of medicines to buy and told me to go home. They told me to take a new blood test in Santa Rosa on Jan 19th to be there very early Jan 20th to see another specialist. I asked if there was a diagnosis that I could take with me in case of relapse or something and they said 'No - just come back on Jan 20th'.
- Jan 19th I took the blood test in Santa Rosa de Copan and my dad and I took the late bus to San Pedro. We stayed outside the hospital overnight, first watching a soccer game in one of the little food stalls stationed outside the hospital and then simply talking to the people that man the stalls 24 hrs a day.
- Jan 20th I presented myself to the hospital at 6am - early as instructed. They told me to wait. Four hours later they said maybe the doctor was held up, but I should be patient and wait. At noon the specialist finally showed up and they ushered me in to see him. He took my blood test results and asked me if I brought him anything else. I said no - they only asked me to present myself with this one test. He asked if I sent any samples to Teguc. Again I said no - they only asked me to present myself with this one test. He abruptly said 'Well then you came for fun, because there's nothing I can do with this. Go back home'. That was the end of that visit. They told me to keep taking my medicine and go home. Again, they wouldn't give me any diagnosis.
- The medicine did seem to help me feel better for a while and I returned to work with the animals until mid February I started to bleed from my gums, feel very weak and again with the fevers. Once again Daisy took me in to the Hospital del Occidente. They said I needed blood, so my cousin went to donate - but they said he had a heart problem that made him ineligible. Then Joe came (a member of our local board of directors), but they said it was too late because they don't accept donations after 2pm. I was there for 2 days and eventualy received 2 pints of blood and one bag of fluid.
- They said I really needed to return to the big hospital in San Pedro Sula, I said I wouldn't go because they already said they wouldn't do anything for me. At that point, they told me that I had leukemia - they first I heard of that and I'm not sure where they got it from. They made my mom sign a form that I was leaving the hospital of my own will rather than transporting to the Hospital Catarino.
- Raul took me down to the private hospital to meet with another doctor there who did some tests and suggested a treatment plan for 5 days. After that, he arranged for me to meet with a blood specialist in the private Hospital del Valle in San Pedro.
- Feb 23 I went to the Hospital del Valle and there they treated me very well. They promptly took me to fill out some forms and then did a second bone marrow biopsy, but this time there was anesthesia. I didn't feel a thing. The doctor told me to wait for an hour to two after and then gave me a written diagnosis which says I have severe aplastic anemia (this means Ayuri's bone marrow doesn't produce blood).
- I returned to the farm and on March 2nd I received a pint of blood at the private hospital in Santa Rosa and told to return the next day for another pint. I returned, but they said I had a fever and best that I return home that day. On Thursday I finally obtained another pint of blood. The third transfusion was on Saturday. Each time I take a donor with me and they test their blood before they give me the transfusion. If I don't, they charge me about $150 per pint. As it is, they charge about $65 for the test and the transfusion.
- The struggle is finding donors with my blood type because blood is scarce in the hospital. I continue to bleed from my gums, but mostly at night.
- Of the three medicines prescribed by the specialist in the Hospital del Valle, we found one right away and one the following week. The third we just finally located last week and I'm told it's hit and miss whether I will find this medicine in Honduras when I run out."
They did various tests at the Cancer Center and asked us to return in the morning to do a third bone marrow biopsy (but this time they scooped a sample of the bone itself). Before finally letting us go at noon, the blood specialist there asked us in to review the preliminary results and said because his blood levels were so low, she had arranged with a doctor in the Hospital Escuela (University Hospital) to give him a transfusion of 3 pints of blood. So we took a taxi to the hospital and entered a war zone. We finally made it through two layers of guards to get into emergency and then with no indication of where to go, we were directed by a student catching his breath that we should enter a side waiting room.
Upon our entry to that room, we were accosted by a young doctor demanding to know why we were there. We said we were there for a blood transfusion arranged between the Cancer Center and a Dr. Chavez. This young doctor kept insisting on asking for our proof of blood donation (which we obviously didn't have) or a relative from whom they could steal the blood. Had it been just Ayurin, they would have turned him out, but I was mad and quite willing to fight the young gods in white uniforms. They kept asking me to leave and wait outside and I kept answering that I'd leave when they started putting blood into him. Three hours we waited for them to "find" 2 pints of blood. Three was presented as an atrocity that we would even ask. Then they decided that his condition was so critical that they wanted to keep him overnight.
Given the instructions from the cancer center and Ayuri's experience in the public hospital in San Pedro, he was having none of that and asked me to sign a release that I was taking him into my custody (the only way we could get him out of there). Six and a half hours after arriving, we finally left. I came to realize that these student doctors were really trying to do their job in war zone conditions - but the way they treat the humble people who stream through their doors is what I would expect of a vet in a cattle operation.
We had arrived in Teguc on Thursday expecting to leave at 4pm. We finally left Saturday afternoon and then our ride arrived so late that we had to stay overnight 1.5 hours away to avoid driving through the night to get back to Santa Rosa, a no-no on the highways for personal security (extreme levels of carjacking) and potholes that can eat your car if you stay on the highway.
The next day, Monday, we met in the local university with Dr. Ricky from a neighbouring city, Gracias, who coordinates the Cuban medical brigades. It was encouraging to have the director of the agricultural engineering programs help us physically locate the doctor on the university grounds and then stay with us until we finished. He sincerely demonstrated full support for any kind of assistance that could be given to Ayuri and while looking for the doctor, mentioned that the students were doing a campaign on Tuesday to raise funds to help Ayuri.
The hope with this doctor is that he helped arrange for another Honduran to go to Cuba for a bone marrow transplant and we're hoping he'll repeat the feat with Ayuri. He told us that we needed to take Ayuri to Gracias that very afternoon for more blood and further tests. He's basically having to recreate all the test results in the public health system that we have already obtained in the private for political reasons in Cuba. It makes sense that they wouldn't want to select someone perceived to be rich to be a recipient of their public assistance.
I took Ayuri to the hospital in Gracias and they did another X-Ray and took another blood sample (this guy needs a plumbing valve that he can simply open to provide samples). The nurse in the lab informed me that they couldn't do half the blood tests because they ran out of reactant and didn't know when more would come (days, weeks or months). Then before starting the blood transfusion, the doctor informed me that Ayuri's defences were so low that he had to stay for the night. This time we relented as we count on a doctor who is genuinely interested in helping Ayuri and who promised to check in with him late that night and then again first thing in the morning.
Tuesday I texted Ayuri at noon that I was on my way and he responded that they were fine with him leaving - just waiting for a doctor to fill out his exit report. We waited until 2:45pm for that report and finally left for Teguc. His arms look like a bad heroin addict with all the scars from injections that didn't quite work too well (the one nurse was almost blind and had some difficulty finding a vein...). But they treated him well. Ayuri mentioned that his room-mates (5) told him it was weird that they all looked sick and he looked fine, but that they understood that he was in far worse condition than them. One asked for his personal information to pass along to his church's prayer chain and others asked for his number to keep in contact (which they have). It's cool to see God in the middle of horrible situations.
I asked one of the young guys there what happened to his arm (all wrapped up). He said it was cut. Then he tilted his head to show the stiches in his neck and the back of his head. He had been wacked 7 times by a machete. Judging by the fact that his head was still on top of his shoulders, I'm guessing the machete wasn't very sharp. Ayuri tells me that during the night another guy was brought in with 3 bullets in him... I could never work in emergency medicine in Honduras!
After waiting 3 hours for a doctor to sign his exit papers, I was able to take Ayuri out the next day and return to the Cancer Center in Teguc to review results. The doctor confirmed severe aplastic anemia and said the medicines he was on were all they could do for him in Honduras. Dr. Duarte mentioned that they used to have an agreement with the Bethesda Hospital in Maryland for cases like Ayuri’s, but that it had come to an end. She mentioned that apart from the US, the other option was a clinic in Navarro, Spain, which would be about 10% of the cost of the required transplant in the US.
On Thursday, a friend helped me obtain a copy of Ayuri’s file in the Hospital Catarino by taking pictures of the documents in the file - a file that has no record of the biopsy from December 29. A medical student who was one of my students 10 years ago took me to a hematologist who told me that Honduras does not have the capacity to perform compatibility tests for a stem cell transplant. Ayuri has 4 full brothers & sisters (mother and father) and I hadn’t understood before that they wouldn’t be automatically compatible for a transplant.
On Friday, March 20th, Ayuri woke up back at our project (we made it home Thursday night) with fever and vomiting and in extreme pain. I was called to his room at 6am and it was a mess. I took him to the emergency in Gracias where they gave another blood transfusion along with medicines by IV (that they had sent me out to pharmacies to find as they didn’t have any) and oxygen trying to stabilize him. I then had to leave for Santa Rosa de Copan for a much delayed appointment that was the original purpose of my trip back to Honduras and the next morning I returned to Canada.
On Saturday morning at 7am they transferred Ayuri by ambulance back to the Hospital Catarino where he has been shuttling between emergency and the men’s ward. This morning, they were trying to locate another 2 pints of blood and indicated that he was still in serious condition. Two ex-students from Hector Emilio Medina Bilingual School in Santa Rosa are our personal angels in that hospital - keeping an eye on Ayuri and notifying us if there is anything he needs that they don't have and his dad can't get. I thought they were afraid of Triny when I spent one year working for her at that school, but it turns out they realized how much they meant to her and they're paying her back by helping us. God bless them!!
We are pursuing options in Spain, Cuba and Mexico - trying to find a place that can help Ayuri with a stem cell transplant, both with action and financial support. More to the point, Ayuri needs a touch from the Master Doctor to cure him outright or keep him alive until He uses a bright doctor here to cure him.