Tips for Getting Through Surgery Safely and Navigating the Recovery Process
I’m recovering from having emergency surgery to remove my septic and leaking appendix. I’m still amazed at how smoothly my surgery went and how safe I felt.
I was lucky: the on-call surgeon was knowledgeable about Ehlers-Danlos Syndrome and how it would affect his surgical approach. The on-call anesthesiologist understood Mast Cell Diseases and my gene mutations, and could therefore keep me safe on the drug side of things. Both doctors took the time to answer all of my and my husband’s questions, to talk through with us the best options given my underlying health conditions, and to review in front of us a medical publication that my twin sister - a pediatrician specializing in Ehlers-Danlos Syndrome and Mast Cell Diseases - had sent.
The advice I share below is what allowed us to get through this experience as comfortably as possible, plus a couple additions that we thought of in hindsight that would have made things even easier. I also strongly recommend listening to the Bendy Bodies podcast episode where Dr. Linda Bluestein discusses her tips for preparing for surgery, thanks to her 20 years in the operating room as an anesthesiologist and as an EDS patient herself. I hope this will be helpful for you.
Preparation/Things to Bring With You to the Hospital
Emergency Room “Go Bag” (for you and your partner/parent/child)
Phone chargers
Headphones
Water and snacks
Emergency medications and supplements
Underwear, compression socks, sweatshirt
If you’re allergic to polyester like I am and want to avoid wearing a gown (which are typically polyester blends), consider wearing a short sleeve shirt so your arm will be easily accessible for IVs and blood draws and consider purchasing and bringing your own gown or gown alternative. (I did need to wear a polyester-blend gown for my surgery and hospital stay, and I left the hospital full of hives from the gown). I learned later of the option of requesting a surgical gown.
Printed educational material to share with your surgical team
Keep an updated list of your “medical life” in your wallet or purse
This document should include your current medications, supplements, allergies/sensitivities, diagnoses, medical providers, pharmacy information, and anything else relevant to your medical situation. Here’s a template.
Have a “just-in-case” meds list
Work with your medical team prior to any emergencies to prepare a list of medications you can take (or try) in an emergency situation (e.g., anesthesia, pain medications, antibiotics, anti-nausea medications, steroids, etc.)
Pharmacy Information
Keep information for your regular pharmacy and a local compounding pharmacy (if you tend to require your medications to be compounded) in your phone and on your “medical life” document.
Leave Jewelry Home
If you end up needing surgery or having a problem with swelling, you’ll be glad to not have to keep track of your jewelry.
Communications and Hospital Staff
Have a family member who knows your conditions present as much as possible. You may be brain foggy or fatigued (or unconscious) when someone needs to advocate for you or catch a mistake.
With rare or complex diseases, your physicians (and nurses) will be operating outside of their usual playbook. Keep track of what the current goals and constraints are, and any experiments you’re running (e.g., currently trying out a drug that you may react to).
Shift changes mean that you’ll be interacting with new members of your care team throughout your hospital stay. You’ll need to be able to effectively and efficiently convey fundamental information about your medical situation to each new member of your team, and not rely upon the previous members of your team to have adequately relayed in their notes (your medical record) the information that YOU deem critical. Have a whiteboard or printed paper with key things they need to know about why your care is different from others (e.g., need significant hydration and salt for POTS, unable to metabolize drugs that use certain genetic pathways, allergy to adhesive, etc.).
During your post-op hospital stay, meetings with your physician team will likely be short and bright and early in the morning. Prepare your questions beforehand (perhaps the day prior). Be sure everyone agrees what the day’s goals are, and any communications that need to happen (e.g., getting info from the pharmacists).
Communications within a hospital setting are like a giant game of telephone. Errors occur even with the best of intentions. Repeating your story and needs, and providing written, easy-to-understand information to providers, protects YOU.
You are in charge of your care. While most of my nurses were excellent, one of them was…not. If you feel unsafe with a particular nurse, you can ask to speak to the charge nurse about having a new nurse.
Questions to consider and prepare answers for:
Do your Primary Care Provider and/or relevant specialists have access to the hospital records?
Who will be managing my care once I leave the hospital?
Do I need my Primary Care Provider and/or relevant specialists to communicate with anyone on my hospital medical team?
Do I need my Primary Care Provider and/or relevant specialists to intervene and advocate on my behalf?
Recovery
IV fluids
Surgery temporarily exacerbated my POTS symptoms, which is not uncommon. Make sure your team understands the importance of giving you adequate IV fluids.
Breathwork helps to calm the nervous system down, lower pain levels, and lower heart rate
Breathwork has been more effective for managing my pain than pain medications.
The physiological sigh and making sure my exhales are longer than my inhales have been most helpful for me during this time.
I don’t tolerate any anti-nausea meds; breathwork helped to get me through my nausea period.
NuCalm
For the first few days post surgery, I struggled to slow my breathing down and do my breathwork practices - except when I was listening to NuCalm.
Gentle Fascial Manipulation
For my abdominal surgery, I was filled with gas. Being puffed up with gas is painful, and when the gas gets stuck and can’t find it’s way out through either end…ouch! Gently moving the fascia (skin) of my belly every so slightly from my right hip up to my right ribs over to my left ribs and down toward my left hip, and continuing in that circle - or portions of that circle, has been very helpful to encourage some of that gas to move through my body while doing my slow breathing.
Schedule post-surgery appointment with osteopath, physical therapist, etc.
I was incredibly lucky in being able to have my Osteopath come to my home to do osteopathic manipulation, which is gentle but effective, a few days after returning home after surgery. Our session improved my pain, reduced the swelling in my abdomen, opened up my vertebrae that had become “stuck” during the course leading up to and after surgery, and improved my breathing.
Gentle bodywork of different types can be helpful in recovering from surgery. Depending on the style of treatment and the specifics of your medical situation, it may be important to have more distance from the surgery before engaging.
Massage
Massages can help to reduce pain, improve blood flow, and enhance lymphatic drainage, which will help with your overall recovery. Even just 5 minutes here and there, whether it’s your feet, hands, neck, legs, back, or full body, can be highly beneficial.
Lymphatic Drainage
Lymphatic drainage techniques are, by nature, gentle and they help to move lymphatic fluid through your body. This lymphatic fluid can get stagnant in anyone who is sedentary and certainly when you’re recovering from surgery, you tend to do a lot of lying around in bed. Buildup of lymphatic fluid can cause or exacerbate pain and swelling, so doing simple techniques to encourage lymphatic flow is important for the recovery process.
The resources I recommend for learning about doing lymphatic drainage on yourself are: (1) Lisa Leavitt Gainsley, who has an excellent book called “The Book of Lymph,” and (2) Stop Chasing Pain.
Proprioceptive Feedback
Since my surgery, it’s been incredibly difficult and painful to stand up straight. Walking is an important part of recovery, but my abdominal pain from the surgery and the related back pain has left me walking (hobbling) completely hunched over. Until…my brilliant and wonderful husband began rubbing my back and butt while I was standing, which immediately told my brain where my body was and allowed me to stand up significantly straighter. Though standing and walking is still quite painful, we’re finding this back-butt rub to make an extraordinary difference.
For those of us with Ehlers-Danlos Syndrome, we tend to already struggle with proprioception. Adding in days of being sedentary and having your insides poked at during surgery can create extra confusion to your brain about where it is in space and where various body parts (like a back) are supposed to go. The proprioceptive feedback of a back-butt rub can clue your brain into understanding how to stand up.
Mobility Drills
The amount of time spent sedentary post surgery is a lot - and it’s necessary. But being sedentary for long periods of time isn’t good for anyone, and it’s especially not good for someone with Ehlers-Danlos Syndrome. Doing everything I can to keep components of my body moving and active has been very important for me. For the first week or so after my surgery, I was sleep deprived and in horrible pain, so I certainly wasn’t spending longs bouts of time doing these drills. Just a few seconds or maybe minutes here and there was all I could manage, and doing these tiny drills have been an important and impactful part of my recovery. In subsequent blog posts, I will share more about these mobility drills.
Bed Positioning
Finding comfortable positions after surgery is challenging. And it seems like once you find a decently okay position, it changes just a few moments later. I’ve been feeling incredibly fortunate to have an adjustable bed frame that has helped to support me in all sorts of angles, and I’ve found my yoga bolster to be very helpful as well.
Biomat
I’ve benefitted greatly from being able to lie on the warm, soothing, healing heat of my Biomat. It’s helped to calm down my nervous system and reduce pain.
Eating
Go slow. Listen to your body. You’ve been through a lot.
Start with liquids (I tolerated fresh vegetable juice better than water or broth), then perhaps thicker liquids (like sorbet or smoothies or soup), then perhaps something gently chewy (like white rice with ginger for managing inflammation, salt for POTS, and olive oil for healthy fats). Progress intuitively. Don’t feel rushed to eat by your medical team.
Eat in as relaxed a state as possible. Do some gentle breathing, longer exhales than inhales before, during, and after eating.