You can ask doctors about hemophilia treatment


Last night I dreamed that I was attending a doctor’s appointment for my wife, Cazandra. This was a follow up to discuss the lab results requested at the initial meeting. The doctor came into the room and shared treatment strategies. She told Cazandra that she wanted to try a new medicine to help relieve some painful symptoms.

I asked the doctor if she had considered how the new drug might affect Cazandra’s current regimen. The doctor looked at me as if I had blasphemed against the holy integrity of the Hippocratic oath. I had no intention of challenging her; I just wanted to know if she was following the proper procedures. I didn’t want to risk Cazandra reacting negatively to a new prescription.

In the dream, I could tell that the doctor didn’t appreciate my line of questioning. To reduce the tension in the room, I explained to him that Cazandra and I had two sons with hemophilia. Through our struggles with clutter, we have learned to question everything. I didn’t mean to offend his thoughts about the treatment. I told the good doctor that we learned from day one to criticize those who administer the treatment to our boys.

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My explanation seemed to lighten the mood in the room. We laughed together and the conversation turned more positive when the doctor explained to Cazandra that she had reviewed all the other medications my wife was taking daily. The doctor reassured my wife and I that she should handle the medical suit well. She asked if we had any more questions, then left the room. I looked at Cazandra and we laughed, ending the dream.

I woke up wondering what I had just experienced. I kept hearing the phrase, “We learned to question everything. This statement is true when it comes to how to treat hemophilia.

I think back to the first meeting Cazandra and I had with her gynecologist about six weeks after our eldest son, Julian, was born. Dr. Jacobs gave us a copy of three paragraphs of The New England Journal of Medicine. He said that short entry was the only thing in the hemophilia journal. He told us that we would soon learn more about the bleeding disorder than most doctors learn in their careers.

My first response was to reject the idea that we could know more than doctors about a medical problem. Unfortunately, we quickly learned that Jacobs was right. When we visited an emergency room or talked to a resident in a hospital, we were helping to educate the workers on what we knew about our son’s condition. We helped provide medical professionals with the information needed to care for Julian, and later our youngest son, Caeleb.

My wife and I passed on the idea of ​​the interrogation to our two sons. We encourage them to ask the medical staff to explain the treatment in case of confusion. We remind them that they are in control of their bodies and deserve to know what to do when doctors suggest a plan. We remind Julian and Caeleb that they understand better than anyone how their bleeding disorder manifests. We encourage them to ask when in doubt.

I believe dreams can help us deal with difficult situations in ways that our conscious mind cannot. In my case, I think my dream helped strengthen my family’s choices about hemophilia care. I especially enjoyed how the relationship between doctor and caregiver developed as we found common ground regarding treatment. We can work together when we lay our cards on the table and allow each other to appreciate the different roles we play in our loved one’s life.

Yes, we learned to question ourselves, but we also learned to respect each other’s points of view. When we reach a place of compassion and understanding, we can move forward by prioritizing the care of our loved ones.

I wish you sweet dreams of wisdom and compassion. May we find ways to provide the best care to those who are dear to us.

To note: Hemophilia news today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Hemophilia news today or its parent company, BioNews, and are intended to spark discussion on issues relating to haemophilia.


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