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Does Your PH Doctor Talk to You in a Way That You Understand?
Often, doctors and the nurses too can talk about test results or other things that may be confusing. I think that many use medical terms, and this confuses. Nurses can help with breaking things down so that my hubby and I both understand. If not, I ask them to break it down.
Do you speak up if you do not understand the terms that your medical team uses? Some doctors are good at this. I find that my hematologist and his assistant both often use medical terms, and I remind them that not everyone will understand. Because I worked in nursing, I do understand more.
Plus, living with PH for 15 years, I find that I know most of the terms that my PH team uses. Do you feel confident in how well you understand your PH and other test results? Have you picked up this “medical jabber” since your PH diagnosis?
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6 Replies
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I feel like every member of my team does present things on a level that be understood by me and by my husband and daughters. Living with PH and many other medical problems the past several years, I’ve picked up so much and have been a voracious reader to try to understand so I can ask intelligent questions and be a full partner in my care. I always get a kick out of it when I have a medical encounter with someone new to me and they ask if I’m a nurse or a doctor. I sometimes kid with my doctor and tell him he only got his medical degree by going to college and I got mine by having all the diseases. My doctors still break it down for us during a visit, because it’s clear they’re including my husband or my younger daughter in the “need to know” aspect. I appreciate that, because it’s important for everyone in the family to “get” where I am and where we’re headed. I’m on more than a dozen medications, and when I’m at a medical visit and someone goes over the list for updates, I know the brand name, the generic name, the dosage and what each is for. That seems to me the bare minimum a person should understand. But almost every single time, the staffer remarks that most people don’t know what they are taking, especially older people. They will refer to “that big pink and white pill” or that tiny yellow pill, etc. I cannot even imagine. If I’m ever reincarnated, I’m definitely coming back as a doctor! I missed the big paycheck this time around! lol!
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I feel my doctors do not explain things to me. I am not familiar with their terms or most things with mental or physical health. And very seldom do I find a nurse that explains things. I have starting calling docs corporate doctors. Do everything by the book for the chief administrator. Fifteen minutes and check out as you leave. My right heart catherization diagnose saves severe pulmonary hypertention. My PCP said it is not that high. Go fish……
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Hehe @robin-webster, I know that’s right! I want to come back as a doctor, too, and that big paycheck.
I am happy that your medical team breaks things down not only for you but for you and your family. My hubby is a diesel mechanic. One kidney doctor broke it down to my hubby using terms he thought that he would understand. They bonded on that, lol.
Most PH patients, if lived with it long ago, I think, does know the basics. I would hope that they read up and ask questions, if not. The best thing that we can do is knowledge ourselves with our medical conditions. You never know when you may need to “teach” medical staff.
Working in nursing, I always have had the mindset that patients know their bodies. Doctors do not always have that same mindset, unfortunately.
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Hi @alfredjohn, I am sorry to hear about communication between you and your medical team. This is undoubtedly frustrating. I think that this can impact how well one is treated and their outcome.
Have you asked your doctors to explain to you in a way that you may understand? What was their response? Sadly, some doctors do cut you short, and you have no time to ask. Nurses are usually helpful then. If this were me, I would ask them and explain to them you do not understand. If nothing from that, I would look for another doctor.
There are some amazing doctors out there that will take the time to explain things as they see you. I am sorry that you have not found one yet. Don’t give up, and speak up and advocate for yourself.
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@robin-webster I can relate to everything you shared. My son’s team has been very good at explaining things to us but reading and taking notes on my own has been a huge help. I’ve been asked so many times if I am a doctor or a nurse. I never thought that would be a career I could handle until my son became ill. A little too late in life to take that path but I wish I could.
In addition to research and note taking I’m also a big advocate for attending rounds when in the hospital. That’s when you can learn a lot. You will also hear a lot of medical jargon so I take notes. I research words and comments that I didn’t understand and if google doesn’t help, then I revisit the topic with a nurse.
You and your family sound like excellent advocates and that doesn’t just benefit you, it helps your medical team a great deal too!
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@alfredjohn I’m sorry to hear that you aren’t getting the one on one attention needed to really understand your health and the plan to treat. Good for you for trying to address your questions through another resource. Here is a link from the PH Association that might also help. The Survivors Guide, Glossary and Decoder helped me over the years.
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