This is the latest in a series of blog posts by Barbara Resnick, PhD, CRNP, written from her perspective as both a healthcare professional and as a patient during the course of intensive treatment for esophageal cancer. This two-part article was written about two months following her surgery. Part One discusses the importance of preparing for going home throughout the course of a hospital stay following surgery. Part Two addresses managing ongoing recovery at home. These blog posts will be helpful to older adults undergoing surgery and their families, as well as to hospital administrators and healthcare providers.
Part One: Preparing for Life at Home throughout Your Hospital Stay
My recent experience in the hospital following surgery for esophageal cancer has made me aware that healthcare professionals (of which I am one) have much they can learn to support their patients’ day-to-day recovery following surgery, as well as to help them prepare for going home. This learning can be enhanced by acknowledging that patients know a lot about their own bodies and preferences, and by valuing the knowledge and experience patients and caregivers gain each day in the hospital. Therefore, you and your caregivers can be a valuable source of information to your healthcare team.
Although people’s responses to surgery are individualized, there are some basic approaches that can be applied to most types of surgeries and hospital stays. My experience was rather intensive, as the original surgery was an esophagectomy. This is a procedure where the esophagus (the tube that moves food from your throat to your stomach) is removed and then rebuilt from part of your stomach or large intestine. I had several complications and had to have a second surgery, all of which resulted in almost five weeks in the hospital!
My experience taught me the importance of thinking ahead and preparing for life at home while I was still in the hospital. Patients and families need to take an active part in this process, because the hospital care team is understandably often more focused on their patients’ immediate medical problems and needs. Patients and families need to ask and remind the healthcare team to teach them things that they’ll have to do when they go home, such as how to care for surgical incisions, what to do with a wound drain, or how to use a feeding tube. Patients and families need to practice these things while in the hospital, under the guidance of their care team. The healthcare team should also explain each medication when it is first given, including the name, what it’s for, how to take it, and what possible side effects to watch out for.
Also, practicing basic daily activities while you are still in the hospital is key to your recovery and in helping you know what you can do safely once you home. These activities include things such as bathing, dressing, eating, grooming, and walking, I was fortunate to have a family caregiver with me throughout my hospital stay. I made sure that I bathed and dressed daily with someone standing by me to help as needed. I walked through the hallways at least a few times a day because my family member could help carry tubes and push the IV pole. If you don’t have someone with you in the hospital, it’s important to ask the nursing staff to help with you these activities. On the actual day of my discharge, I insisted that the nurse teach me and my family how to set up the tube feedings I needed when I first went home and to practice with us.
Going home after surgery is something to look forward to, but it can also be a scary time for patients and caregivers. Generally people are a little more active once they get home, depending on their living situation and what they are able and willing to do each day. To help with the transition to home, healthcare providers in the hospital – particularly physical and occupational therapists – should ask questions about your home setting, such as whether you have stairs, whether you have a bathtub or shower, and what the height of your bed is. If your care team doesn’t ask these types of questions, you and your caregivers should offer this information so the team can help you best prepare for continuing your recovery at home.
You and your caregivers need to think through what your day will be like when you go home so you can plan how much personal help and medical equipment you might need. My family bought a shower chair and bedrail for me to grab. Fortunately I discovered I was able to manage without these things but it’s good to be prepared. No one can tell you exactly what you will need, so finding out what your options are is your best approach.
If you use a computer, you can research available supplies online. Or you can call a local medical supply business, as they usually have reliable experience and advice. You may also want to talk with others who have had a similar surgery. You can find support groups online, or the hospital nurse or social worker may be able to connect you with a support group in your area.
When I first got home I had a jejunostomy tube. That is a feeding tube that is inserted into the small intestine to provide additional nutrition following surgeries that affect swallowing or how much you can eat and drink. I was given no instructions on what to do with this tube when it was not hooked up to the tube feedings, and I didn’t think to ask. Sometimes health care staff may assume that you already know what to do if they know you are a health care professional, or that you are smart enough to figure it out by yourself. As a nurse I knew I should keep the tube closely adhered to my abdomen so it would not pull out, but figuring out what to do with the additional 15 inches of tubing was a problem! Initially I placed the tube in the pocket of my pants and wore long sweaters to hide anything that might be showing. I thought there had to be a better way, so I searched online for belts or holders for jejunostomy tubes. Fortunately, I had the resources to find and purchase a variety of options to see what would work best for me. My healthcare providers were unaware of these supplies, so once the tube was removed I gave them to the team so they could show them to other patients.
Despite using the belts and keeping the jejunostomy tube as safe and protected as possible, I had considerable pain around the tube site and felt the tube should be removed. Not only was it uncomfortable, but it was actually interfering with my ability to eat or drink because of the pain, and pain medication did not help enough and was killing my appetite. Most people need extra nutrition to tide them over while the new esophagus heals, but in my case I felt that the harm outweighed the benefits. I brought this to the attention of the healthcare team and told them I would make a big effort to get enough nutrition to maintain or gain weight on a daily basis. This is one time where my experience as a health care professional worked to my advantage, I was able to convince them to remove the tube, and fortunately my pain went away within 24 hours. Later, the healthcare team said that they never had a patient get the jejunostomy tube removed so soon after surgery. I suggested they consider this approach for other patients who could take in enough food and fluids. This is an example of how you can speak up regarding your needs based on your knowledge of your body, how you are feeling, and the effort you are willing to make to speed your recovery. This was a great lesson for the healthcare team, too.
(You can read Part Two here.)