In May 2023, my co-author and I published our book, Navigating Your Healthcare Journey: Lessons Learned to Get the Care You Need and Deserve. Little did I know that I would have to “practice what I preach” by the end of the year. Here are ten of the lessons from our book that we applied to my husband’s recent healthcare journey:
Lesson #1: Ensure that you have a primary care physician and go for regular checkups.
After experiencing some shortness of breath and fatigue and having put off an annual physical for a couple of years, my husband scheduled a visit with his primary care physician. Upon examination and hearing a regurgitation in his heart, the primary care physician referred my husband to a cardiologist. The cardiologist diagnosed the mitral valve problem and said he would need surgery to repair it.
Lesson #2: Find a specialist who has experience in treating your condition.
The cardiologist recommended a highly regarded cardiac surgeon at a hospital about one hour away. The surgeon specialized in mitral valve repairs and replacements and performed these procedures successfully over 200 times/year. After doing some further research and a personal consultation with the surgeon, we felt confident that he would be in good hands.
Lesson #3: Prepare a list of questions in advance to ask the doctor. Have someone you trust (e.g., a family member or friend), join you to take notes and help clarify any instructions.
When confronted with this serious medical condition and facing surgery, it was critical for us to understand how to prepare, what the procedure would entail, and what to expect afterward. While it was natural for my husband to feel nervous or apprehensive, I was trying to help ensure that all the questions were asked, and the answers were understood. I added questions about where to park, where to check into the hospital, and other logistics.
Lesson #4: Ensure that the physician and the hospital have your complete medical history along with a list of any allergies and all current medications, including supplements and OTC medicines.
Prior to the surgery, my husband entered all of this information into the hospital’s portal for review by the healthcare practitioners who would be managing his care. In his particular case, some of the medications needed to be stopped before the procedure, while other medications were added.
Lesson #5: Ensure that you have an updated advance directive.
Before the surgery, we updated my husband’s advance directive and provided a copy to the hospital. The document designated me as the one to make any healthcare decisions if he became unable to do so himself. I provided my name and phone number so the doctors and nurses could contact me at any time.
Lesson #6: If the patient needs help and is unable or unwilling to advocate for themselves, don’t be afraid to speak up.
While the nurses were wonderful and my husband received excellent care, there were occasions when he needed something but didn’t want to bother them. He knew they were busy and was reluctant to make requests. For example, they ordered a ham sandwich for lunch for him, not knowing that he was a vegetarian. I had to use the tablet in the room to help him order his meals for that evening and the next day. And when he developed a rash on his back, I had to ask if they had a stronger medication available.
Being a patient advocate doesn’t mean that you have to be rude or pushy; rather, it’s about being politely assertive and asking for what you need. The hospital staff is busy, and they have many other patients to care for; however, I encouraged him to ask for what he needs.
Lesson #7: Maintain your emotional health as well as your physical health.
After the surgery, my husband had some trouble breathing and needed something to help him relax. He had experienced some hyperventilation syndrome in the past. It’s normal to feel anxious and wonder if you’re ever going to feel ‘normal’ again. He was able to get an anti-anxiety medication which helped.
Lesson #8: For any newly prescribed medications, be sure to understand what they are, why you need them, how/when to take them, any potential side effects to look out for, and ask them to be reconciled with any medications you were taking before surgery.
Being a dentist, he was more knowledgeable than most about the medications and how to take them. However, after the surgery, our medicine cabinet was lined with seven different medications. While someone else can pick up the prescriptions at the pharmacy, many patients may need help staying organized, maintaining the regimen, and understanding how long to keep taking them.
Lesson #9: Coordinate the care if more than one physician is involved.
In my husband’s case, we were in ongoing contact with his primary care physician. His cardiologist was also informed of the outcome of the surgical procedure and a follow-up appointment was scheduled.
Lesson #10: Be sure to adhere to the post-surgical instructions and allow time to recuperate.
Before leaving the hospital, a follow-up visit with the cardiac surgeon was also scheduled. A home health nurse was offered, but he was feeling much better and declined the offer. As of this writing, he continues to take his medications, rest, and do some moderate walking. Cardiac rehab will begin in another few weeks.
We are fortunate to have so many friends and family members who checked in, came to visit, and brought some comfort food. We are grateful to have access to such excellent healthcare, and he is definitely on the mend. Unfortunately, everyone is not so lucky!
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