Keeping Hope Through Pain

I have been living with a clotting disorder for 16 years. I was only 20 when I experienced my first DVT and pulmonary embolism—and I didn’t even realise what was happening at the time. I was very active, so I assumed I had pulled a muscle in my leg. I was limping badly, and my mom told me that if it wasn’t better in three days, I needed to see a doctor. I brushed it off, insisting it was just a muscle strain.

On the third night, while bathing, I noticed my leg had a bluish colour. The next day I went to the doctor and was immediately booked into hospital. The medical staff were fascinated. Many of the trainee nurses asked if they could do a case study on me because I was so young and had no obvious risk factors.

After extensive testing, they discovered I had no blood flow from my waist all the way down my leg, and my lungs were full of clots as well. They were shocked that I was still walking, breathing normally, and maintaining normal blood pressure. Despite countless tests, they could not find a cause, and at the time we believed it was a once‑off event.

I nearly lost my leg. A surgeon explained that if my blood didn’t start thinning and the clot didn’t dissolve, there would be no other option. Thankfully, I still have my leg—although it has been permanently damaged by the clot.

I spent a week in hospital before being discharged on what was reportedly one of the highest doses of blood thinners ever given at discharge.

Unfortunately, it was not a once‑off event. I went on to have five more DVTs and another pulmonary embolism—while on blood thinners. I have been in and out of hospital more times than I can count, and still no one can tell us what has caused this.

I have two children, and doctors cannot tell me whether they may one day develop the same condition—especially my daughter. My most recent DVT was in my left arm, leaving it weak and painful, although I am still able to use it. I now also have calcified clots in both legs.

I am a fighter—and a mother. My two beautiful children each live with rare diseases of their own, unrelated to mine. Each of their conditions is just as unique and challenging.

It is incredibly frustrating when doctors eventually tell you that you have reached the limits of their knowledge—that there is nothing more they can do. It is difficult not having answers, not knowing where to turn, or who to turn to, when answers don’t seem to exist.

I have learned to live with hope. While there is no cure for me and no way to fully prevent another clot, I hope that one day I won’t have to live in constant fear of the next one—or whether it could be the end. I live with chronic pain, but I can still feel, I still have all my limbs, and I am still alive. I get to watch my children grow and overcome their own challenges.

I am deeply grateful for the small things in life. I have learned to let go of what I cannot control. I have also studied advanced herbalism to expand my knowledge—for myself, for my family, and hopefully, one day, to help others who have nowhere else to turn when medicine reaches its limits.

What does “equity” mean in your story?

Equity, for me, has been a very hard and unfair journey. The less doctors know, the more expensive everything becomes. Some doctors also tried to take advantage of us. When I was first diagnosed, the treating doctor charged the medical aid, and after the medical aid had paid, they tried to sue us for the same account. They also failed to check whether the medical aid would cover me in ICU, and because they didn’t follow up, we had to pay the R15,000 bill ourselves. I was only 20, facing a massive medical debt, and I had just lost a new job because I was hospitalised on the very day I was supposed to start. I was then booked off for six weeks with no income.

Thankfully, my family helped me through it, and I learned very quickly how medical aids work and how to fight to get the coverage I needed.

We also encountered some truly wonderful doctors who fought with us against the medical aid. They were the best, and I wish I could have taken them with me when we moved provinces.

We are still paying off medical debt from our small but rare family, and sometimes I fear we may never get out of the hole—especially when another test is needed. We eventually had to cancel our medical aid because we can no longer afford it.