A single mother's medical complaint: "I need to live"

Author: Qiao Renli, Keck School of Medicine, University of Southern California, USA

Ms. A's lung transplant was successful, she used to be my patient, and I was the pioneer who helped her get into the U.S. medical system, and I spent a lot of effort to save her.

Lung transplantation

Ms. A first came to my clinic more than a decade ago and the symptoms were severe shortness of breath. She had no health insurance and started seeing a doctor all out of her own pocket. According to the hospital's self-funded diagnosis and treatment standards, the specialist outpatient clinic charges hundreds of dollars each time. Ms. A is not only not rich but also belongs to the truly poor, and the reason why she ignores the high outpatient fees is that she knows that the fees for several outpatient visits, although not cheap, are insignificant compared to the achievements required for the purpose she wants to achieve.

It didn't take much effort, and the diagnosis was established quickly. Ms. A suffers from idiopathic pulmonary fibrosis, and her lung function has deteriorated to less than 40% of normal, resulting in chronic hypoxic respiratory failure and has begun to develop pulmonary hypertension. Severe illness and respiratory failure severely limited her range of motion. If it were not for the special willpower of a mother, it would be very difficult for such patients to get out of bed and take care of themselves in general.

Chest x-ray after lung transplantation. The lung field is completely clear

However, although Ms. A cannot work, she still has to run a home independently. She is a single mother and the only one to rely on two children in their mid-10s. The welfare system in the United States, especially California, allows Ms. A's family to live without having to worry about the basic costs of living. However, two underage children need more than food, clothing, and shelter. Ms. A hopes that her children will not fall into social assistance adoption, and that they will be educated and grow up under the protection of their mothers. So her real main complaint was, "I need to live."

Generally speaking, whether or not to "live" is a ready-made answer for anyone who does not need to think about it, and it is basically not a question at all. At the time of the visit, Ms. A left her eleven-year-old son at a neighbor's house, but took her nine-year-old daughter with her. Not at all, as often described in Chinese novels, the little girl does not have a little "early home" appearance, still carries all the characteristics of an ignorant child, and cannot even sit quietly for a while. Emphasizing the age of the child does not mean that the medical care suspect will cause trouble for the child, but children of this age are really not suitable for the serious topic to be discussed.

Ms. A explained that she couldn't bear to send both children to trouble with the neighbor' house. But it was easy to feel that her real intention was to let the doctor see and experience the difficulties of her situation.

Although the doctor's most important thing is compassion, to solve the problem, really help the mother who really needs help, just sympathy is not very useful. To achieve Ms. A's goals, she needs to be able to live to a level that is close to a healthy person, and she needs to extend her life expectancy until her children are nearing adulthood. In Ms. A's diagnosis, the severity of her lung function impairment and the general functional status, life expectancy is generally less than three years. Therefore, the only medical means that have any hope of changing expectations is lung transplantation.

For patients with pulmonary fibrosis, lung transplantation can both improve quality of life and prolong life. In experienced medical institutions, the success rate of transplantation for this situation is very high. Moreover, the priority score in the transplant organ allocation system is also very high. The U.S. leads the way in organ transplantation, but if you don't distinguish between indications, the five-year average survival rate of lung transplantation is only barely above 50 percent. In patients with pulmonary fibrosis, if properly managed, survival for seven to ten years is quite certain.

These are medical considerations, there is nothing wrong with that. Even if the cost, under the social security conditions of the United States, as long as it can be included in the list of transplant candidates, it will not be a big problem, and it will basically benefit from the government's poor relief medical insurance.

The practical problem is that the assessment of organ transplant eligibility goes far beyond medical and cost considerations. Specific to Ms. A's realities, the first and most difficult obstacle to resolve, and almost certainly to attract rejection, is that Ms. A lacks family and social support. Post-transplant patients need to have resources at their disposal, especially human resources, to assist patients with a rigorous series of follow-up and treatment. However, Ms. A's situation is not only that she is left alone, but that her true intentions are the opposite, that she is trying to find her own support for her children.

Ms. A is unaccompanied in the United States, and social support is the first obstacle that must be overcome. To this end, I jumped out of my doctor's duties and contacted Tamaki. I noticed that Tamaki and Ms. A had exactly the same last name, and both were very "non-English" spellings. Tamaki used to be a specialist in our department, Fellow, and has been graduating and practicing medicine independently for many years. Tamaki was well received for both business and character during his fellowship, and he had a little special friendship with me. Tamaki's hand is particularly large, the little finger is almost the thickness of the average person's thumb, and the general medical gloves are very tight even if he wears the largest size, and if he is not careful, he will be broken. The month I was doing the tracheoscope rotation with me, I specially prepared a pair of rubber gloves for him. It was probably then that fellows began jokingly referring to me behind my back as "Papa Qiao."

Extremely rare, Tamaki and Ms. A not only share the same surname, but also come from the same small town on the eastern side of the Andes. They had heard of each other before, and few people had settled in the United States from that small town. Tamaki led the effort to organize their fellow villagers, found a legal guardian for each of the two children, and signed documents guaranteeing all the help they needed.

Ms. A's lung transplant was eventually achieved.

Nine years later, Ms. A died of an infection during the outbreak. She was not vaccinated. Her children have grown up.