Waking As An Amputee

March 2, 2022

If you're like me, you woke up after a traumatic incident to find that you are an amputee. In my case, I became a left above the knee amputee after complications from a blood clot in my right leg. This article will discuss how I learned about the amputation, initial feelings about the amputation, the questions my family had, recovery, possible complications, physical and occupational therapy (exercising), expectations, and support.

Learning about the amputation

My amputation surgery took place March 16, 2021, during the Covid era. I'd later learn I had been through many procedures small and large, with this being one of the last, for six days. Awaking about two weeks later, I was not aware of the amputation and was only told where I was.

Under normal (non pandemic) circumstances, family or friends may be there when you wake to speak with you about the amputation. Maybe there is a meeting where you can ask questions or have a support system. This being during the Covid era, there was no family to greet me.

You will likely experience phantom leg or phantom leg pain. I can remember feeling as if my left leg was sleep (very uncomfortable) and hanging through a hole in the bed. Yes, I actually thought I was in some type of specialty bed that I'd never seen in a hospital before. One of my surgeries was a tracheotomy, so I was unable to speak or ask any questions.

At some point, the doctor realized I would try to move the blanket when being checked. She leaned down close to my face and asked "you know don't you?" I nodded in response because at that moment I realized there was no leg dangling, but I was still unaware how much was gone. It would take a few more weeks to learn how much of my leg was removed.

Feelings

I will not suggest or tell anyone the correct way to feel. I will admit that I really did not feel much (could have been all the drugs LOL), but my family would arrive within a day or two of me waking and tell me that I would be amazed to hear my story.

The first feeling I can remember having is relief that I was still alive. If this is not your feeling, that is ok. Some of the feelings that exist are relief, anger, grief, optimism, pessimism, blessed, punished, fear, failure, embarrassment, determined, happy, sad, and the list goes on. You may experience more than one feeling at a time, or go through a series of these feelings.

Speak up about how you're feeling with family, friends, and medical staff. During discharge, you will likely be provided information for support groups and asked about counseling. If you feel depression or have suicidal thoughts, please seek immediate help.

Questions from my family

In an emergency situation, someone else may be responsible for making this decision for you. In my case my spouse was responsible, and he included my mom. This is not an easy decision and could cause stress, mental breakdowns, depression, and regret for the responsible family members.

Your loved ones will have questions about how you will react, your care, what to expect, how to prepare the home, how the children adjust, and how they help you return to "normal." My husband learned early on, and I learned later, there isn't much information available online for how this process goes. It can be very vague and seem like a smooth process.

But what if you don't know what comes next? When to begin the process for the prosthesis? Who do you go to? Does someone set up an appointment or refer you? How long is the healing process and how soon do you meet with a prosthetist? The short answer, in my case, was the nurse practitioner at the vascular surgeons office eventually provided the name of a prosthetics and orthotics clinic they work with.

I say eventually because no matter how many questions, or who, we asked, we could not seem to get an answer. We kept getting the response that we would get the answer and the help we needed but we were never told who would provide, approximately when it would be provided, and what we needed to do to prepare. After working through some complications with my residual limb, we were provided answers about the next steps in July 2021 (yes you remember my surgery was March 2021).

I would suggest researching Prosthetics and Orthotics clinics in your area, or a national clinic like Hanger. Meet with more than one location as this will be a lifelong relationship and you want to be comfortable with the prosthetist and satisfied with the products offered. These meetings are designed to be your interview process. During these interviews ask as many questions as possible, take notes, inquire about the types of prosthetics they use or are most familiar with, and get a feel for the comfort of the relationship and the knowledge they have.

It can be frustrating to Google and not find answers to the immediate questions. Some of these questions cannot be answered by Google. I cannot provide a time frame for how long it will take for you to meet with a prosthetist, but I can tell you where to look. The vascular surgeon or another doctor will let you know when your limb has healed and is ready for the next step.

Recovery

Recovery can vary based on the reason and type of procedure or complications. After a scheduled surgery, you may not spend as much time in a medical facility and may be sent home after the required number of days to continue care. It is important that care be followed as instructed to reduce the chance of further complications.

Most of the care will include wound care, medications, the best placement of the residual limb, self care, and follow up appointments at the home or a medical office. I remained in a medical facility for two months after surgery and continued to receive medical care. Once home, I continued to have visits from home healthcare nurses, and physical and occupational therapists. These visits may vary based on health insurance, but my visits were one to two times per week from each party for roughly two months.

At home my husband and mom were also responsible for my care by helping with dressing my wounds, medications, meals, self care, getting to and from medical appointments, getting the home prepared, and so on. When leaving the hospital I was provided with a wheelchair and bedside commode. You will need a portable walker and other items that may be suggested are a shower/bath chair, car door handle, transfer board, safety handles in the restrooms, and stair lifts.

The hospital does not provide the supplies needed for wound care. This is usually provided through the home healthcare service. This means that you want to take home all of the items remaining in your hospital room to help with dressing your wound, and make an appointment as soon as possible for the nurse to visit and order the necessary supplies.

Possible complications

I will not pretend to know of all the complications that can occur, but I am aware that the wound can open again. This is exactly what happened to me. While in my final stages of acute rehab, my wound developed a small opening. In much of the research I have found that staples or stitches should be removed within the first few weeks after surgery. My staples remained in place more than a month later and began to detach from one side of my residual limb.

Honestly this turned into a horror story because I was still in a hospital facility and they seemed confused on what to do. My husband had to locate the vascular surgeon and make the locations work together to transport me for a follow up. From there we began a treatment with a solution (Dakins), which continued at home, and we eventually moved on to a wound vac, and finally back to a wet to dry treatment (using saline).

If your wound opens, develops blisters, bleeds, or has any other unusual issues, contact the vascular surgeon for an appointment as soon as possible.

Exercising

Occupational and physical therapy will begin as soon as you are cleared by your doctor. Many medical articles note some of the benefits as promoting blood circulation, helping to reduce constipation, preventing weakening of the muscles, and helping your body to prepare for a prosthetic.

The occupational therapist will usually focus on helping with everyday necessities like brushing teeth, taking a shower, washing clothes, cooking, as well as strengthening the upper body through various exercises. He/she may use exercise bands and other handheld items for strengthening. They may even do simple things like watch how you sit to eat or have you stand and play a game to help with balance.

The physiotherapist will help with using the wheelchair, learning to walk, exercising the limbs, proper placement of the residual limb, and even wrapping the limb. In my experience, the physiotherapist will push your limits and help you learn to do things quicker than you may be comfortable with. I suggest taking advantage of the therapy while you can and learning as much as you can while they are available.

Some of the exercises, at least for me, seemed a little useless (LOL). I can only say that I have learned (the hard way) with time that these exercises are beneficial and necessary. You will be asked to do things like flex your foot forward and backward, bend your knee back and forth, which seems a little simple and useless, but this is necessary daily. I learned my ankle tightened after not doing these, and it took quite awhile for my ankle to loosen and the pain to reduce. Ask for and accept any handouts they can give you if necessary, and work on the exercises daily.

One of the most important things to do is to stretch the residual limb to avoid muscle contractures. You will be asked to lay on your stomach if your health allows you to do so, or to lay flat as much as possible. Other options are hip flexors, hip extensors, and hip abductors. Keeping the limb straight as often as possible will help with preparing for the prosthesis, gait (walking) with the prosthesis, and preventing muscle shortening.

Expectations

Your personal expectations might be too high, too low, or just right, BUT how do you really know what they are? Family, friends, doctors, therapists, prosthetists, and other amputees may all have opinions about where you are and what you are or are not capable of doing, but who's right?

Without preparation or knowing this would occur, I had no expectations. I actually thought this would be as simple as getting a leg and going back to life as normal. it is what you see other amputees do, or so you think. I was not aware of any possibilities or limits. Maybe you have had this discussion about life after surgery, or maybe you have searched the web for more information.

I cannot give you the answer to what you should expect at week one or year one, but I believe you should allow encouragement from others and yourself, but DO NOT feel that you are not doing enough, or what you should be doing, based on opinions. Many of the people you will communicate with still have two legs and can only guess what life is like for you.

Everything you do post surgery is an accomplishment. Maybe you believe that because you're expected to learn how to maneuver a wheelchair, this is not an accomplishment. Maybe you read an article about another amputee who does rock climbing and you're still learning how to climb more than one step. Everything YOU do is an accomplishment.

I wish I had the energy after waking to keep notes of my accomplishments. I do now, and I call them milestones. I suggest keeping a journal (I use the notepad in my iPhone), or any form of notes to keep a list of your accomplishments or milestones. Remember to be proud of yourself when you reach a goal, or do something new.

Know your body. You can push yourself, but know when to listen to your body. This does not mean listening to the fear, but listening to the pain, sickness, or issues with your limbs. Also listen to the advice of your medical team.

Support

I am blessed to have the support of my husband, mom, children, family and friends. None of these individuals are amputees so there is only so much I can share, or that they can understand. Sometimes these conversations can even be difficult if they had to make the decision and feel guilt at making the decision.

It also cannot be assumed that someone has support from loved ones. With or without loved ones, this can be a lonely and depressing experience. There are peers, support groups, and therapy available for amputees and family members. I will admit I have not reached out to any support groups YET. I have spoken with and asked questions of two amputees and I have joined amputee groups on FaceBook. These individuals and groups have been helpful (and admittedly shocking) in learning some of the feelings, experiences, limb issues, technology, advancements, and achievements.

I plan to locate support groups for myself and family, and I recommend the same for others. If this is not of interest to you, I recommend at least joining a group on social media, or finding another amputee you can talk to. Everyday is not easy, and there will be many emotional swings regarding your new lifestyle. You and your loved ones may need more support than you are aware of.

Wrapping Up

I am almost reaching a year into this process and I and my family are learning so much. We realize we are learning many of these things through personal experience, other amputees and amputee groups, and web searches. I know that for myself, it can be frustrating and feel as though there aren't many of us out there, or that there isn't much to share or learn when searching online.

For this reason I have decided to step (pun intended) forward and share information that I or others have learned. I look forward to my continued learning experience and to sharing what I learn from others. Maybe there's a new exciting technology, exercise, or just a new way of learning how to cook or bathe. Let's learn and share together!

Disclaimer: The contents of the Waking As An Amputee blog, such as text, graphics, images, and other material contained on the cutabovetheknee.com website are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the cutabovetheknee.com Site.