Tuesday 29 November 2016

Six Months to Live

Tuesday, September 6, 2016

Today I had an appointment to interview a local doctor. I had asked to speak with an HIV/AIDS specialist in Lesotho and was told that if they are a doctor in Lesotho, they ARE an HIV/AIDS specialist.

This doctor has been in Lesotho, practicing medicine for twelve years. He told me that 30% of his patients are HIV+, that he knows of. There were many details he shared with me about the progression of care in Lesotho, the financial costs of HIV on the country, and the psychological impacts of being born HIV+, becoming HIV+ later in life, or being affected by it.

There is still a lot of stigma around HIV/AIDS in Lesotho, and around the world. He believes we need new radical policies and thinkers to make a drastic change. He believes that many people still do not know their status, and there is great fear around knowing. People in Lesotho are very well educated about protection, there are condoms everywhere- I don't know how many washrooms I was in that had containers full of free condoms. The country is working tirelessly to stop the spread of HIV/AIDS. Women are disproportionately affected by HIV and AIDS in Lesotho. Inequality in HIV prevalence begins in early life, with HIV almost twice as prevalent amongst young women (10.5%) than young men (5.8%) aged 15-24yrs old (Avert). Gender based violence has been found to be a significant driver for the increased HIV prevalence among women.

The doctor spoke of many side effects of having HIV/AIDS, the side effects of the drugs, as well as a high rate of hypertension in many of his patients. Lesotho has the second highest rate of HIV in the world. Currently 1 in 4 people in Lesotho are HIV+. This has left a generation of children behind, creating 200,000 orphans in Lesotho. 1 in 10 people in the country are orphaned children. These may be just stats, they are devastating. They need to change.

The doctor told me that there is a lot of kidney failure in Lesotho, and that all publicly funded dialysis must happen in South Africa. As many of you know, I had a kidney transplant in 2009 and was on both hemodialysis and peritoneal dialysis before getting my gift of life. 

When you are diagnosed in Lesotho, you are prescribed six months of dialysis through public health care, and after that you have to pay for it on your own. Each session can cost up to 2500R, which is $250 Canadian, a steep price for survival. When I dialyzed at Grand River Hospital, I did it three times a week, and if my levels weren't great, they would ask to have me in a fourth time. There was no bill at the end of the five hour treatment.

To dialyze up to Canadian healthcare standards, you would get three treatments a week. In South Africa you would pay $250 per session, so $750/week x 4 weeks/month x 12 months/yr= $36,000 per year to dialyze.  To put in perspective how much it would cost to SURVIVE with kidney disease, the World Bank has stated that Lesotho's per capita income, is $2,494. Yes, you read that right. That's $2,494 per year. $36,000 per year for dialysis on a $2,494 income.

Now imagine having to face the fact that you need dialysis to survive, and it is only funded publicly for six months. Doc said bluntly to me "it's a death sentence, it's six months to live".



We moved on from kidney disease, and began discussing general health care. Doc said the amount of patients per doctor, and hospital beds per doctor are simply unmanageable. The World Bank has stated that Lesotho has on average 1.7 doctors per 1,000 hospital beds. The need for doctors in Lesotho is astronomical. The need for care and support is desperate.

I don't mean to continually harp on the idea that we are extremely lucky to live in Canada, but even when we look at the ARVs (antiretroviral therapy-medication used for HIV/AIDS), we have more than forty choices of what Doc calls "ARV cocktails". In Lesotho, there are 2-3 choices. When discussing "cocktails", it means a combination of the drugs that you take to create a mixture that works well in your body, with the least amount of side effects that fights against the virus.

Over and over we are reminded that there are people around the world who do not have the same rights and privileges that we do here in Canada. Incredible public health care has been the difference between me being alive today or not.

I was born in Burlington, Ontario. Little did I know then, that meant I would live to see six months past my diagnosis...fast forward eight years later and I am sitting in front of a man who is telling me if I were born here in Lesotho, I would have died in January of 2009. 

I have been given the opportunity to live past my six months. What have I done past my six months?
I finished my University degree, I married my best friend, I found the career of my dreams, I bought my first home, I travelled to Lesotho and I wake up every day without tubes, without dialysis, with a brand new kidney, able to enjoy a hot shower, smile at my scars, have the energy to go to work and the ability to live the life I have always strived for.


   

I pledge to use my extra months to be a voice for the voiceless. Join me. Ask questions. Meet the people of Lesotho, learn their stories, meet their babies. Laugh with them, cry with them, grow with them. Together, we can create change. 


For more information about Bracelet of Hope, feel free to contact me at ccoghlan@braceletofhope.ca or check out our website at www.braceletofhope.ca 

Love.


Thursday 29 September 2016

The Golden Bike

Monday, September 5, 2016

Today I woke up and went to the Post Office, bought some beautiful fabric and wandered around town. Andy picked us up and we went to the South African border to purchase some Lesotho crafts and hats. I purchased several hats and a beautiful cane.




From the market, we drove up to Tlhakuli. It is a beautiful place up on the side of a mountain. I couldn't help but take a ton of photos of this beautiful scenery.








In this Foster Home there are only four children: Malefetsane, 11 and his twin brother Sello, who are also Mamokhele's brothers, Katleo, 9 and Phuthi, 2. Me Makhotso is the Foster Mother at this home, which means "the mother of peace". 


 The boys take very good care of their younger 'sister' Phuthi. When we arrived, Phuthi was still sleeping. Once the boys came home from school and began to play, Phuthi was up and ready to go! I read them a great story that had counting numbers in English and Swahili as it was a Kenyan book called "We are going on a safari" from the Go Go Grandmothers. They asked me to read it for them again and again, so we also counted in Sotho and English.

One - Nngoe
Two -Peli
Three - Tharo
Four - Nne
Five - Hlano
Six- Tselela
Seven - Supa (my favourite)
Eight - Robeli
Nine - Robong
Ten - Leshome

The great thing about counting with kids is that they are always excited to get to the number ten! It is like a great accomplishment to celebrate! LESHOME!




The word that seemed to be their favourite was "cheetah". I would point at an animal and say "elephant" or "lion" or "zebra", and they would smile, but I would point to a cheetah and they would say "CHEETAH!".

We played with a tennis ball, marbles and tops. The boys showed us how they can spin tops in the dirt. Phuthi was always there ready to put her hand out for the boys to spin the top onto her hand. Phuthi is never looked at by the boys the same as siblings do in my experience (like a bother), she is taken good care of, and is always watched over by her older brothers.





The highlight was not any of these games, it was actually a purple bike. The boys were so excited to show us. They went into the cellar and dragged out their bike. The bike had no wheels, no brakes and no chains. I was wondering what they were going to do with this piece of metal. The bike was not fit to use as a traditional bicycle with pedalling and going uphill, however it was a great riding game.



The boys took turns hopping on the bike and tearing down the hill, squealing with joy. Over and over, they rode down the hill at top speed and once it slowed down, would jump off. Such joy from this bicycle. In Canada, we would most likely thrown it in the trash, but at this home, this was a tiny piece of gold for the kids that brought such joy. Phuthi watched the boys enjoy the bike, smiling.








Of course, Phuthi stood by watching, but she did not want to stand idly by. She went over to her brothers and they picked her up and down the hill she went. We were all terrified and told the boys not to do it again, but from the way they rode down that hill, that was not the first time they had done it, and it would probably not be the last.




We played games, talked and watched them ride their bike for a couple hours. The bike was pure magic. They were thrilled to have this bicycle that was just a broken piece of a metal and a reminder of a bike that once was. We asked the boys how school was going. They were very proud to show us their drawings of cars, and their homework they have been completing. They were also very proud of their multiplication skills, telling us "4x2=8, 8x2=16" and with a little help, they stated "16x2=32".


While the boys showed us their homework, 'Me Makhotso took Phuthi to the washroom, as she is learning to potty train. When they returned, she showed Phuthi to wash her hands.


The boys and I collected the peach blossom petals and delightfully threw them in the air.



It was clear that the boys and Phuthi were very happy in the home with their Foster Mother. We walked down the hill and I couldn't help but think of how treasured that bike was. A bike with no wheels, no brakes and no chains. It was a tiny piece of gold in their world. They were so proud of this bicycle and truly treasured having it. I also couldn't stop thinking about their shoes. Many of the kids in the homes wore shoes that did not match, were falling apart or were simply far too large for them.


After hugs and goodbyes, we walked down the hill and passed some beautiful scenery.







That evening we went out to dinner with Andy, 'Me Mahlompho, Brad, Pastor James, his wife 'Me Mantsepo and their daughter. It was a lovely dinner. We discussed the Foster Homes, and I asked James what he felt the biggest needs for the children right now would be. He responded saying the need for shoes and clothing is great. Kids wear out clothing and shoes quickly, and when kids are generally wearing pre-used clothing, it wears down easily.

My goal when I return home is to find a monthly donor, or a sponsor for shoes and clothing for these children. They deserve to have proper clothing and shoes that fit.

These kids come from such broken places and shine so bright. I go to bed tonight hoping and dreaming about the day I hear that Phuthi, Ithabeleng, Mamokhele, Ntaoleng and all of our Foster children have grown up to finish school, find jobs and are healthy and happy adults. I wish the best for these children. They are so special, so full of joy and hope.
 They deserve all of the opportunities in life to thrive.



Until tomorrow...



If you'd like more information or would like me to speak at your school, workplace or church about Bracelet of Hope, please contact me at ccoghlan@braceletofhope.ca or visit www.braceletofhope.ca