ET patients deserve better!

My husband and I celebrate a recent

wedding anniversary.

My husband had a heart attack last week. Technically, it was an acute myocardial infarction, which means he was stricken with chest pain in the parking lot of the Home Depot while loading up some sheets of plywood at 11:45 a.m. He drove himself to the nearest ER, and by 4:30 p.m., he had been taken on an exciting ambulance drive to the big regional hospital, had a stent inserted to clear an artery that was 95 percent blocked, and was eating a pudding cup and feeling no pain.

All of this came out of the blue, and of course we are deeply grateful to the quick thinking of emergency personnel, cardiac catheter lab staff, and the doctors and nurses in cardiac care. 

But we couldn't help comparing the care he got to the care ET patients are offered. It certainly revealed holes in the care most of us ET patients receive. For example:

Heart patients get better information about their condition. My husband received explanations of  his many tests from a team of doctors and nurses. The nurses had models of the human heart and even a handy little gizmo that showed what his stent looked like and how it had been inserted. The tech doing his echocardiogram explained the procedure as she was doing it. A dietician came in to talk about the benefits of a mostly plant-based diet. In case he forgot any info, it was all written up in a nice paper packet and sent home with him. No one was ever too busy to talk or to provide more explanations. In addition to the cardiac information, my husband's care team was on the lookout for anything else in his tests or blood work that might indicate other problems. For example, concerns were raised about glucose levels and blood pressure management. Addressing these problems will improve overall health.

ET patients? Few of us get any written information about our disease, how it works, how it might progress, what our bone marrow biopsies showed, or what morphing to PV or MF might look like. All this information is readily available to the doctor, so it puzzles me that better information can't be provided. While heart attacks are better understood than MPNs, much more information could and should be provided to ET patients to help them understand the nature of their disease and their current condition.

Heart patients get explanations about the importance of their medication and possible side effects. When my husband was discharged from the hospital, the nurse explained the purpose of all four of his new medications. We know that one will help strengthen his heart and another will help prevent stent rejection. We also know that those meds could be discontinued within a year if things go well. We know that two other meds will control blood pressure and bust the plaque that clogs his arteries. Those he will likely take for life. Some of these meds can cause internal bleeding, liver problems, or other issues. The nurse provided information about each one and written instructions about what side effects were normal and which ones should send us to the doctor or emergency room.

ET patients? I hear from scores of patients on our Facebook page who are terrified of taking hydroxyurea (HU) when they read the medication insert from their local pharmacies. Far too often, this insert is the very first bit of info they get about HU. I often wonder how many ET patients delay starting their med, don't take the prescribed dose, or decide to pursue some quack cure--all because the hematologist didn't take a few moments to explain the side effects and benefits of the drug. Fear of HU (and fear mongering about HU on some so-called support sites on social media) all work against the patient's having confidence in their hematologists, their treatment, and the medical system in general.

Heart patients get better self-care education. In the next several weeks, my husband will see a physical therapist, a cardiac care nurse, a cardiologist, and his family doctor. He can even sign up for a free nutrition class. All these appointments were made before he was discharged from the hospital. It was emphasized that continued quality of life and return to normal activities depend a lot on general lifestyle, especially diet, exercise, and tobacco use. The cardiology team stood ready to help with this effort on an ongoing basis, and shared information with the family doctor about other conditions that should be addressed.

ET patients? Most ET patients I hear from are highly motivated to do whatever they can to maintain or improve their quality of life. Patients often want to know if there is any diet that will help combat fatigue or headaches, and if exercise will help them. The answer is, of course, yes, there's lots you can do to feel better. But that information is often viewed with indifference or skepticism by hematologists. 

Bottom line: When you have a chronic illness like heart disease that affects our health, it makes sense to tell patients to look at risk factors that they can control. So why aren't ET patients given equivalent information and help? Why do we have to figure out for ourselves that maintaining a healthy weight, getting age-appropriate regular exercise, and eating a healthy diet are all clot risk factors that we can control and should do? Why don't we get a session with a dietician, a physical therapist, or a weight control counselor? 

My own suspicion is that ET is still typically thought of as a disease of post-menopausal women. And older women just don't get much respect in Western society. Our symptoms are still dismissed as hormonal "deficiencies" or, worse, hysteria. Perhaps as more younger patients  and men are diagnosed, this will change.

I know that some hematologists are starting to take ET more seriously and to look at how to improve our quality of life. The MPN Quality of Life project is worth a look. I think it's also time to step up and start asking doctors for help not only in managing our disease, but in improving our quality of life. As a consumer of medical care, we have the right to seek second opinions--or seek new doctors--if our current hematologists are indifferent or uninformed about our disease.

Be well!

Related: Seven wishes about ET

Related: How to bird-dog your doctor

Related: Does your doctor CARE?

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