Patient Stories | 28 Years Old, 6 Heart Stents: My Life-and-Death Battle with a Rare Disease

^⌈3yearsold: xanthomas:            
   the disease quietly descends ⌋

Around the age of 3, xanthomas began to appear on my body, and my blood lipids were abnormally high.My cholesterol and low-density lipoprotein once soared to over 20. At that time, doctors could not even confirm what disease this was, and could only try treating it with traditional Chinese medicine, but with little effect. It was not until I was 12 that I began receiving Western medicine treatment at a top-tier hospital.

Starting from elementary school, I noticed that my heart would hurt after intense exercise, but it would always go away after resting for a while. Back then, I never thought this could be a sign of blocked blood vessels, and I never had any related examinations.

^⌈ 21yearsold: the moment of life and death:          
    heart blood vessels 80% blocked⌋

It was not until 2017, when I was 21, that the frequency of my heart pain suddenly intensified — I would experience pain five or six times a day, and even wake up from sleep because of it. After going to the hospital for examinations, the results shocked both me and my family —more than 80% of my heart blood vessels were blocked!

The doctor told me I was actually lucky, because many people in this situation die suddenly in their sleep. I was immediately admitted to the hospital and underwent two cardiac stent surgeries. The surgical costs were extremely high, and without insurance, my family would have been financially ruined.

In the following years, I had to undergo angiography every year. The condition of the stents worsened each year. In total, I had six stents placed and underwent multiple balloon dilations.Before every surgery, I would wait outside the operating room, watching the previous patient being wheeled out, and then it was my turn to be wheeled in. That feeling of helplessness and fear is still unforgettable to me.

^⌈ 24yearsold: cardiac arrest:      
    a brush with death⌋

In 2020, when I was 24, my condition deteriorated again. During a balloon dilation procedure, my heart suddenly stopped beating, and the doctors even asked my family to come see me one last time. Fortunately, I pulled through.But this incident led to grade II heart failure, which is irreversible damage.I stayed in the intensive care unit for a week and lost more than 20 jin (about 10 kg).

People around me all thought I would be crushed by this major blow,but on the contrary, this near-death experience gave me a new understanding of life. I increasingly felt that every day is hard-won, and that I must take my health more seriously.

After being discharged, I started trying to exercise. Although the heart pain had always kept me from moving, I realized that only through exercise could I build up the strength to fight this disease.

^⌈25yearsold: everything moving in a good direction⌋

In 2021, I applied for the 【Repatha Charity Assistance Program】, which allowed me to receive Repatha free of charge for 24 months. With the combined use of injections and medication, my low-density lipoprotein dropped from 16 to around 14.Although progress was slow, every step was full of hope.

In 2023, I learned about the Red Rice community, and discovered that so many people, just like me, are fighting against this disease that even doctors cannot name. In the community, everyone encourages each other, shares experiences, and even discusses how to cope with various challenges in treatment. This collective strength made me feel deeply warmed and inspired, and further strengthened my confidence in fighting the disease.

^⌈26yearsold: another heavy blow⌋

Just when I thought everything was gradually getting better, my condition took a major turn. In 2023, when I was 26,I was diagnosed with aortic stenosis progressing from moderate to severe.This news was like a bolt from the blue for me. At the time, I was being treated at a hospital in Chongqing, and the doctors told me the surgery was too risky and they did not dare to take it on. So, my family and I decided to go to Beijing to find a more authoritative hospital and specialists.

At Fuwai Hospital in Beijing, we waited in line for a week before finally getting an appointment with a specialist. However, the specialist's diagnosis plunged me and my mother into complete despair. After looking at my medical records, he told me bluntly: “This surgery cannot be done — it is a matter of life and death, with only a slim chance of survival.” He also said the hospital had only taken on one similar case, and the patient barely made it off the operating table. Hearing these words, my mother and I were both stunned with fear.

The specialist also told me that even if the surgery were successful, it would only treat the symptoms, not the root cause. Because my low-density lipoprotein was as high as 14-point-something, my blood vessels would eventually become blocked again.He suggested I try a treatment called “lipid apheresis.”Although this method had been rejected in my early treatment, in my desperation, I decided to give it a try.

^⌈26yearsold: a brave attempt:      
    lipid apheresis treatment⌋

After returning to Chongqing, I began researching lipid apheresis treatment. Fortunately, my family was very supportive. In October 2023, I underwent my first treatment at Chongqing Daping Third Hospital. After the treatment, my low-density lipoprotein dropped from 14-point-something to 1-point-something. With each subsequent treatment, the peak LDL level gradually decreased — from initially returning to 14 within three weeks, to after seven or eight treatments, it only rose back to around 8 at most within two months.

The most obvious change was that the discomfort in my heart disappeared.Previously, even with stents in place, my heart still felt congested, with occasional sudden pain. But after lipid apheresis, these symptoms clearly disappeared. Vascular examinations also showed that the rate of deterioration had greatly slowed down — finally, I no longer needed to undergo angiography every year!

^⌈The financial pressure behind the treatment:
finding a balance between hope and reality⌋

Although the treatment results were remarkable, the cost was no small expense. After insurance reimbursement, each of the first few treatments still cost over 10,000 yuan. Later, I switched to the First Affiliated Hospital of Chongqing Medical University, where each treatment still cost 6,000 to 7,000 yuan after reimbursement. As a child from a single-parent family, with a modest salary, the financial pressure was enormous.Therefore, I decided to undergo treatment once every two months, and during the months in between, I control my condition with medication and injections.

Although the effects of apheresis and injections do not last long, at least they ensure that for a period each month, my low-density lipoprotein is relatively low — which is still better than staying at a consistently high level.

In my personal opinion, for friends who have not yet found an effective way to control their blood lipids, and for those who already have vascular plaques, I strongly recommend that you look into lipid apheresis technology.In the future, if more and more people learn about HoFH, and more people understand and accept lipid apheresis treatment, I believe the price will definitely come down!

Suggestions for fellow patients

Through all these years of fighting this disease, I have summarized a few pieces of advice, hoping they can be helpful to everyone:

This patient story is shared by Wang Xin herself and compiled by Red Rice.

Unauthorized reproduction is prohibited.