A few months ago my mom had “routine” outpatient surgery. I heard from my dad that, after two days at home, she still wasn’t feeling better.
I called to check in.
After a few minutes and some questions she finally told me she hadn’t urinated in over 24 hours. It didn’t take me being in healthcare to know this did not sound right. While she talked, I did a quick check on Google for “not peeing after having a catheter”. The first two sites I hit said to head to the ER immediately. I made her promise to get off the phone and call her doctor right away and head to the ER (which, thank goodness, she did!). What should have been a one day procedure with a week of recovery at home turned into five nights in the hospital, kidney failure and a scare for my whole family.
After going through this most recent event with my mom, I was so thankful that I am in healthcare and am comfortable asking questions and doing internet searches. I know how scary these situations can be, and it can be even worse when you don’t understand them. I’ve seen a lot of different scenarios in my 14 years as a physical therapist.
I’ve also seen the flip side as a patient myself and as a family member.
I believe there are two things we can all do to help ourselves and make the medical process as smooth as possible if we ever find ourselves in these situations.
1) Communicate – this means talking and listening
For the patients –
This is NOT the time to pretend to be strong, or act like you know everything, or be scared to ask for help. You have to be willing to be honest and vulnerable and admit when something hurts. I have so many patients come in my door who are in pain but refuse to tell me. I ask how they are feeling and they say “fine”. Maybe they are tired of talking about their pain, maybe their family is tired of hearing of it, maybe they are embarrassed or just plain want to ignore it. I understand all of these, I really do. As your healthcare worker, though, I need to know how you REALLY feel. I need specifics. I need to know when it hurts, how long it lasts and when it started. I need to know if it burns when you pee or if your crotch is numb. You have to strip away your pride and tell people if something doesn’t feel right. You aren’t being a baby or being weak – you are helping to make your care as effective as possible! Also, be honest if you haven’t been listening to the nurse’s instructions after a procedure or doctor visit. Don’t say “ok” and walk out with no idea how or when to take your medication. Don’t be afraid to write it down or ask them to repeat themselves. Nurses are very efficient and sometimes go through the information fairly quickly. If you’ve just woken up from surgery, you might be loopy and directions can be hard to follow or remember. It’s so much easier to ask and communicate when you have them in front of you than to try and get them on the phone later.
For the family members/support system –
It can be HARD to be a nurse at home, and it can be even harder when it’s someone you love dearly. Any communication issues you may have had prior to the injury/surgery can manifest even more deeply when one of you are in pain. If you suspect something might be wrong, now is not the time to back away and play nice. You may have to get outside of your comfort zone and ask questions. Try to get some answers from your loved one on how they really feel. Then you need to reach out and communicate with the health care workers. Again, ask questions, write down the answers, ask more questions. Go with your loved one to their doctor appointments so you have another set of ears to hear what’s going on. Ask, “How are you doing?” many times throughout the day. If something doesn’t seem right to you – maybe they are sleeping 20 hours a day when they usually sleep 6 – just call the doctor and ask if it’s normal.
2) Be your own advocate
Doctors are amazing people and have very difficult jobs. I work with some phenomenal physicians and respect all of them. I can also tell you this – they are busy. Extremely busy. They see many patients throughout the day and they rely on their nurses and support staff to keep things organized and moving. They won’t always remember what procedure they did on you or what day they did it. That doesn’t mean they are bad doctors! It means they are busy and they need you to be your own advocate. You need to walk into your appointments ready with your list of questions and concerns. You need to believe in the symptoms you are experiencing and not sweep them under the rug because you don’t want to be a “nuisance” patient. You need to read the labels and instructions with your medication. Once you leave their office, doctors will assume that you are doing fine unless they hear otherwise from you. If you never tell them how you feel or that something feels wrong, they will think you are doing great. I don’t think you should interrogate your doctor or question every move they make. I just want you to know that you need to take the reigns on your own health and healthcare, and you need to not be afraid to tell your doctor or nurse when something feels wrong. I have never heard of a single case where a patient called their doctor’s office with a concern and was turned away. They are happy to see and help you. If they aren’t, find another doctor or get a second opinion.
Hopefully you will never find yourself in a situation like our family did, but if you do, please talk, listen and stand up for yourself and your care. You really might save a life!