Help Nonto with her journey to health Campaign
My name is Nonto Khanyile. I'm 33 years old. In 2013 I contracted an intestinal virus. I was treated for it over a week in hospital.
And then discharged. I was told everything would return to normal. But that never happened.
I started getting intense pain everytime I would eat. It didn't matter what I ate, as long I ate, I was in excruciating pain and vomiting. I saw doctor after doctor, and I couldn't get help.
I went through so many dietary changes under the advice of doctors, that at some point I was surviving on a liquids and baby food. Eventually I was diagnosed with Chronic Intestinal Pseudo Obstruction (CIPO). CIPO basically causes paralysis of the digestive organs. The intestines are not able to move or absorb food.
They are constantly in a state of obstruction. This illness has caused me to lose function of my stomach and intestines. I have gone through a lot of surgical interventions to try and treat it.
My large intestine was surgically removed, but that did not help. I continued to decline over the years. By 2020 I had lost a dangerous amount of weight from not being able to process food.
My gastroenterologist placed a feeding tube and put me on predigested liquid formula in an effort to give my body the nutrition it desperately needed. I was not able to tolerate feeds as well as we had hoped. I was continuing to vomit, and they caused horrible pain.
I was never able to reach the feeding rate needed to sustain my body. I had to be put on Total Parenteral Nutrition (TPN) which is nutrition that goes through the veins directly to the heart to give me all the vitamins, minerals and the calories that my body needs.
All of these interventions that are needed in order to keep me alive are very expensive. My medical aid only pays for the TPN. The medical supplies that I need for the TPN and feeds every month amount to approximately R4000 a month.
The medical aid does not pay for the medication because my illness is rare and is not the list of the 25 PMB conditions that medical aid is obligated to cover. I often have to choose between buying all my TPN supplies and medication.
This is dangerous, as I desperately need my medication and I also cannot safely administer the TPN without all the necessary supplies. TPN needs to be sterile and setting it up needs a sterile field because the TPN goes directly to the heart.
If the TPN gets contaminated in any way, it becomes very dangerous and can cause sepsis. In 2021 I came close to dying from septic shock. I am having a very difficult time affording my medication and TPN supplies because I am no longer able to work.
I was medically boarded in 2020. Additionally, I suffer from very bad chronic pain. This chronic pain is treated by a pain specialist using nerve blocks and ketamine infusions. Unfortunately, the hospital where I get my treatments require a co-payment fee each time.
I am not always able to afford these co-payments which means I go without my treatments and suffer horrible pain on a daily basis.
My family tries to help out when they can, but they are not always able to. I am drowning in debt.
I am reaching out to ask for help with my medical supplies.