What Primary Care Physicians Need to Know About Working With Patients With Limb Loss/ Limb Difference
Written by Beth Hudson:
The first part of my recovery kept me hospitalized for a year. At that time, I still had my left leg and my doctors were busy dealing with other issues. But it soon became clear that the leg would not heal. My elective LBKA was on August 23, 2018. At that point I had only been home for two months, and my PCP was not yet involved in my care.
Once the medical dust settled, I was told it was time to get my PCP on board and that most of my care would be transferred to him. This included wellness checks and prescription meds. At first I saw him every three months. Props to him; if there was an issue he thought needed the care of one of my specialists, he said so and set up the appointment. I then went every four months, then every six months. Now I go once a year for a check-up, and also if an issue comes up.
His nurse practitioner is incredible and checks up on me periodically. I also love the fact that there is a portal, and I can just contact him through that for minor things.
Although I have a “leg” doctor who oversees my residual limb and any issues I have with it medically (not prosthetically), my PCP has, on occasion, helped me with amputation issues. Pain management on my amputated side and skin issues are the most common. This is pain that occurs because of pelvic issues I have and with skin breakdown that occurs above my residual limb.
The difference between my “leg” doctor and my PCP is that my PCP focuses on my entire well-being. He takes care of other normal issues that would come up with any person, amputee or not. One thing I made sure of when I was turned over to his care is that he had all my medical records from my accident and that he actually read them. I didn’t want to go in and have to give my medical history to the nurse every time I saw him for a check-up. Secondly, I wanted to make sure that he would work with my medical team from Boston if a serious issue arose. And thirdly, that his bedside manner was both professional and kind.
He was my doctor before my accident, and he’s great! But both he and his staff truly stepped up their game after my accident. If I contact him through the portal for an issue, my answer is swift. Every once in a while something comes up that requires an immediate in-office visit; I always get in the same day if I call in the morning. They take good care of me, and his staff are always friendly, compassionate, empathetic, and well trained. Five stars!
Although some of us have a tendency to focus mostly on our amputation issues, your PCP should look at you as a whole person. If you don’t have a “leg” doctor, then your amputation/residual limb should be an integral part of your care from your PCP, but not the only part. They should have some knowledge of the issues that amputees have and should be able to offer resources if the problem is not in their wheelhouse. Unfortunately, we still get sick and have other medical issues that are not related to our amputation. If all your PCP does is concentrate on your amputation, or one that has no idea how to help you care for it,,it’s time to find a PCP who is able to care for your whole body and well-being. This includes mental and emotional well-being, which is just as important.
If you are not happy with how your PCP treats you, then it’s time to shop around and find someone who can properly take care of you – the whole you. Interview doctors in your insurance plan. Approach it the same way as you did when you found your prosthetist. Talk to other amputees in your area and find out who their PCPs are. Your PCP and their staff work for you, and sometimes I think we forget that.
And your PCP should be honest with you. If they don’t know how to solve a medical problem, they need to have resources, including specialists, to whom they can refer you. No doctor knows everything, and I truly believe that more cooperation, rather than competition, needs to be happening in the medical field. My PCP has referred me to a podiatrist and an arthritis specialist since my accident. Both had successful outcomes because he did not have the specialized knowledge and knew that seeing a specialist was what I needed. Have a frank conversation with your PCP; make sure both of you have your medical and physical goals on the same page. As mentioned before, this goes for your prosthetist, your OT/PT, your trainer – anyone who is helping you become your best.
Along with doctors, I would like to digress a bit. If you live in a place where more than one hospital is available, do your homework and find which one would best suit your needs if an emergency were to occur. I learned a hard and painful lesson a week after I got home. Made a rookie mistake, fell out of my wheelchair, and was taken to the closest hospital (there were three to choose from). This was a huge mistake, and a nightmare. My husband and I actually called one of my nurses in Boston, and within half an hour, I was on my way back to Boston in an ambulance for the care I needed. The emergency room doctor totally dismissed my pain, told me nothing was wrong and to go home. I couldn’t even get off the gurney. Luckily the head doctor at the ER that night was on my trauma team in Boston, knew my history, and took charge. Here’s the weird part – that hospital has an affiliate relationship with my Boston hospital, but they have different charting software. So this local hospital could not access my records. I had no idea. A few months later, I had another medical issue; we went to a different hospital that was a bit farther away. They used the same charting software as the one in Boston and had immediate access to my medical records. They were not an affiliate with my Boston hospital, but there was a huge difference in the care I received.
If there is only one hospital in your area, I suggest you find out how they can access your records so that you or a loved one don’t have to spend precious time giving a full history. Ask your PCP to help with this. Best to be prepared and hope you never have to go to the ER to find out.
I spent the 2018 new year in long term rehab. My new year’s resolution was to not be a patient by new year’s 2019. After 2019 rolled around, I realized that my resolution was a pipe-dream and that I would always be a patient. Because of our amputations/limb losses and the medical issues that surround them, we will always be patients. We deserve good care. We need to be proactive to find those doctors who will give us that care. Use your resources if you need to search for a new one. Take good care of yourself by finding a PCP who will help you be at your best.
And remember: You never know how much strength you have until you are called upon to use it.
