Fact 1: Patients Are Crucial to the Success of Research
Patient collaboration is essential for advancing medical research. Scientists and doctors rely on the participation of individuals like you to obtain valuable insights that cannot be gathered otherwise. No one understands pulmonary hypertension (PH) better than those who live with it every day, and your experience can provide crucial data that make a difference in the development of new treatments. Medical advancements and current treatments are a direct result of patients’ valuable participation in research studies.
Fact 2: There Are Many Ways to Support Research
It doesn’t matter if you were recently diagnosed with PH, have been living with it for years, are young or older, or even if you don’t have PH. There are many ways to contribute to medical research. Your participation can make a significant difference in the understanding and treatment of this disease.
Fact 3: There Are Multiple Ways to Find a Research Study or Clinical Trial That’s Right for You
If you are interested in participating in a study, there are several ways to find an option that fits your situation:
Fact 4: Participating in Clinical Research Involves Risks and Benefits
Participating in clinical studies involves certain risks, such as side effects or adverse reactions to treatments, or even the possibility of not receiving an effective treatment. However, there are also significant benefits, such as taking a more active role in your health, gaining access to a medical team specialized in PH, trying new treatments that are not yet available to the general public, and contributing to scientific progress that could help others.
Fact 5: Patient Safety Is the Number One Priority
Patient safety is fundamental in any research study. Strict safety measures are in place to minimize risks, and each study is closely monitored for any adverse effects. If a health risk arises, necessary actions must be taken, and it must be reported immediately. Protecting your well-being is always the top priority in the development of new treatments.
Participating in clinical research can not only benefit you directly but also serve as a valuable contribution to future generations of patients. Your involvement can pave the way for new treatments and, ultimately, a cure.
HAPCHI is committed to guiding patients in finding doctors specialized in treating pulmonary hypertension, providing this service impartially and without endorsing any specific physician.
Pulmonary hypertension is a rare but serious disease, and due to its complexity, many general practitioners have limited training in its management. For this reason, it is highly recommended that patients consult a pulmonary hypertension specialist. These professionals have advanced training and experience in treating this condition, ensuring that you receive the best possible care for your health.
¿What to Expect?
Being diagnosed with pulmonary hypertension can be a life-changing experience. Each patient reacts differently to this news. It is normal to feel a range of emotions, such as anger, fear, loneliness, frustration, worry, numbness, or a combination of them all. There is no right or wrong way to react. Allow yourself to feel and process your emotions without judgment, so you can move forward in the adaptation process.
Before receiving the diagnosis, most patients were already experiencing difficulty breathing and other symptoms related to pulmonary hypertension. For many, the diagnosis comes after a series of medical visits and tests. While some are fortunate to be diagnosed in the early stages, the majority have had to navigate multiple doctor appointments and complex medical procedures.
Some patients express a sense of relief upon finally receiving a clear diagnosis. As one patient said, "I was grateful to finally know what was happening to me. Now we knew what we were facing." However, it’s important to remember that while a diagnosis may feel like an ending, it also marks a new beginning. The journey of finding a specialist, receiving the right treatment, and making adjustments to daily life is just the start of a new path.
Shock and Denial
The impact of receiving a pulmonary hypertension diagnosis can be overwhelming. The body's and mind’s natural reactions to stress may help patients navigate the first few days after diagnosis. Some people feel completely overwhelmed and unable to think about anything else, while others describe it as "walking in a fog." In these early moments, denial can act as a coping mechanism, giving patients time to handle urgent matters before fully confronting the reality of their condition.
It’s important to remember that while denial can be a helpful part of the adaptation process, prolonging it may delay seeking essential medical care. Starting treatment for pulmonary hypertension as soon as possible is crucial, as it can help improve symptoms, slow disease progression, and support both physical and emotional adjustment.
Guilt and Bargaining
Guilt is a common emotion among newly diagnosed patients. Some may feel responsible for becoming ill, for not seeking medical attention sooner, or for not taking better care of themselves. Others feel guilty about the impact their illness has on their loved ones. While these feelings of guilt are understandable, it’s important to remember that you are not responsible for your condition. At times, patients go through a phase of "bargaining," where they try to make sense of their diagnosis by wondering what might have been different if they had made other choices in the past.
It is crucial to remember that these emotional reactions are natural, but they should not prevent patients from seeking the necessary treatment. As patients come to terms with their condition, many find that understanding their diagnosis gives them a sense of control, allowing them to move forward with greater determination.
Sadness, Fear, and Depression
Throughout the adaptation process, experiencing deep sadness is common. Many patients feel fear about their future and the well-being of their loved ones, and the idea of living with a chronic illness can be overwhelming. Some may even go through a period of major depression, characterized by feelings of hopelessness, isolation, and anxiety.
While these feelings are normal, it’s important to be aware of the signs of clinical depression. If difficult emotions begin to interfere with daily activities such as sleeping, eating, or socializing, seeking support from a therapist or mental health professional can be beneficial.
Acceptance
Over time, many patients experience a decrease in the intense emotions that arise after diagnosis. As they begin treatment and their physical symptoms improve, many find that the emotional "fog" starts to lift. Acceptance does not mean that everything will immediately return to normal or that life will be exactly as it was before. However, with time, many patients find ways to adapt to their new reality.
Accepting pulmonary hypertension as part of your life does not mean giving up; rather, it means learning to live with the condition and finding a new way to enjoy life. It is a process that takes time, and while it can be challenging, many patients discover ways to live with purpose and joy again.
Adjusting and Moving Forward
The adaptation process is unique for each patient, but over time, most people with pulmonary hypertension find ways to move forward while taking care of both their physical and emotional health. Medical treatment is just one part of the healing process. True healing also involves nurturing emotional, mental, and spiritual well-being.
Some helpful coping strategies for newly diagnosed patients include:
Remember, life is still what you choose to make of it. By recognizing your emotional, physical, and spiritual needs, you can find a path toward a fulfilling life, despite pulmonary hypertension.
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