Tuesday, January 8, 2019

Chronic Invisible Illness: When the Unexpected Happens

Something I have learned over the years of chronic illness is that the only predictable thing about illness, is that it is unpredictable. This held true with a recent procedure. I was scheduled for an abdominal gastrointestinal surgery to repair some issues due to lax tissues from Ehlers-Danlos syndrome (EDS). The surgery went well, my surgeon was pleased. He took extra precautions because of the EDS. We knew I'd be in the hospital anywhere from a few days, up to a week. Well, at a week, I was still in the hospital, no closer to going home. I was struggling with being able to advance diet back toward normal, but this needed done before I could go home. As days passed, I struggled more. I eventually ended up back on clear liquids only (first stage of trying to advance diet). I also was getting more abdominal pain, more bloating/swelling, spiking fevers at night, etc. My surgeon was watching me, checking labs, ordering abdominal x-rays, etc. As I continued to struggle, he had me started on IV nutrition to help support since I was not eating enough. IV nutrition requires placement of a PICC line (peripherally inserted central catheter). But, once the PICC line was placed, then labs could be drawn from it rather than being stuck each time. (And, why do hospitals think 4 am is a good time to draw labs and turn on the bright overhead lights?) Anyway, surgeon ordered an abdominal CT scan. Once he had those results, he came by, said he was planning exploratory surgery with goal of being in the OR in the next hour....this was a Saturday morning. Wow! It was a lengthy surgery. It turns out I had a perforated bowel and that all needed cleaned up, damaged part of bowel resected. I did not wake from surgery until middle of the night so had no idea what all had happened. I knew I woke with even more tubes. I learned I was in ICU, not back in the adult inpatient unit I had been after the prior surgery. I was on oxygen, CO2 output being measured because of being on IV morphine, had a nasogastric (NG) tube suctioning (gross), numerous IV lines for nutrition, antibiotics, fluids, various medications, morphine, etc. They wanted me up walking, but I was so weak, light headed, unstable, that we ended up with a walker for stability for me, two people going with to help with the two IV poles, oxygen tank, being able to hold onto me via gait belt, etc. We were quite the little parade. 

This second surgery really wiped me out. I go into every surgery as strong as possible physically, mentally, emotionally. An emergency surgery left me no time to prepare, plus I was already physically weak from the prior surgery, difficulty eating, infection, etc. It took work to try to find the positive. it took work to choose to smile. Once I realized how close of a call I'd had, I was grateful to be alive, grateful to be well cared for. I knew no one wanted what had happened to happen, that all were trying to help me get well, that all were rooting for me to go home ASAP, and hopefully in time for Christmas. My surgeon was super strict one morning about the compression stockings. We explained I had pressure sores starting. It turns out that was the morning my platelet count spiked critically high. We found a compromise of using the calf compression sleeves, but no compression stockings. 

I was certainly deemed complex. Apparently healthy looking when admitted initially, but prone to pressure ulcers, struggle to recover from first surgery, need second surgery, struggle to recover from second surgery, etc. White count very high, platelet count very high, heart rate high. Cardiology and hematology called in. 

After the second surgery, I struggled more with back pain, neck pain, and shoulder pain. Physical therapist was there to help take me for walks, but he helped problem solve positioning for me to try to relieve the other pain. Through trial and error, figured out how to sort of mimic cross between my zero gravity chair and my pillow nest in my bed at home. That helped. It was still very hard to sleep. However, more than one nurse commented on how comfortable my "nest" looked. 

Progress was counted by removal of tubes. The one I was most excited to get rid of was the NG tube. I had started gagging on it for no reason by the time it was pulled. Removal was not fun, but so glad to have it gone. It still sort of felt like it was there for another day or so. I was not really claustrophobic, but had gotten so I did not want any face tubes snug, kept loosening oxygen and CO2 lines. This was partly because of nausea that was severe at times and anything close to my neck or nose/mouth made things worse. In fact, some nurses let me have a break from the CO2 tube when nausea was at its worst. The last lines to go were the IV nutrition, IV antibiotics, and I think one other. Then, I was finally allowed up by myself! I could take myself to the bathroom without help! I could take myself for walks in the hallway by myself! My nurse said she did not care where I went as long as I stayed on the floor and out of the critical section of ICU. (I was in a step-down ICU, but all of ICU was the same floor). 

The recent events may seem like not much good happened. However, I am alive, had excellent care. My family was supportive and kept me going on days when I wanted to give up. I also had the opportunity to educate various other providers on EDS and mast cell activation syndrome. Although, one evening at shift change, when the day nurse was explaining to the incoming night nurse what was going on with me (lengthy process). The night nurse asked me what type of EDS I had. Most asked what EDS is, are not aware there are multiple types. So, I knew she knew more. It turns out she has a child with EDS. 

Something else I learned. I may be a dietitian, trained in nutrition, know in theory how to advance diet post-op GI surgeries. However, that does not mean all bodies respond well to standard protocol, and mine certainly did not. Plus, it is impossible to be fully objective with oneself. Also, if sugar, artificial sweeteners are recommend against early post-op, then why do the standard supplements used right after surgery contain so much sugar, or other suspicious ingredients? I avoided the supplements after second surgery as I was afraid of them after what happened after first surgery and trying to use them to keep protein intake up. It helped I was on IV nutrition for second surgery, thus had less pressure to rush advancing diet. Also, one of the most helpful pieces of advice I was given early in trying to start eating post-op second surgery was by my surgeon. He said if it sounded good, try. As crazy as it sounds, the first thing that actually sounded good was tomato soup. This is also the first food I successfully kept down. So, it became my "safe" food that I ordered every meal in addition to whatever I was trying next. Mashed potatoes were another early "safe" food. I tend to come from an intuitive eating perspective, but also science-based. These often go together, but not always. Tomato soup did not really make sense as a good first food, but intuitively, it worked. I also learned that one can pick and choose off of a hospital menu. Just because an entrĂ©e comes with specific sides per the menu, does not mean one has to have those sides. I did a lot of substituting. Otherwise, I was leaving a lot uneaten that I was not ready to try yet.  

This whole situation was quite the learning experience and I suspect will continue to be for a while. I am grateful to be home, to be sleeping better, no more blood sugar checks, insulin injections, lab draws, Lovenox injections, etc. I am still thin, weak, tired. I have a lot of healing and recovery ahead of me. It is hard to be patient. Eating, walking, self-care are tedious, tiring. But, these are my tasks for now. I have regained strength, weight, and muscle after other surgeries. With these surgeries, the loss is more global, but I can regain again, even if it takes longer. I am choosing to move forward with hope. Hope that recovery goes well, hope that these surgeries give some amount of relief. 
Copyright © 2019 by Chronic Wholeness. All rights reserved.

Wednesday, August 29, 2018

Social Media Contact Information

Updated contact info! Yes, I have Instagram now! No, I do not know how to use it! Learning....please bear with me.


Chronic Wholeness
Pursuing wholeness in brokenness, strength in weakness, health in illness.





Copyright © 2018 by Chronic Wholeness. All rights reserved.

Tips When Traveling for Surgery

I have had multiple surgeries, some local, some long distance. I have another long distance surgery coming up, thus have been preparing for travel for post-op, thinking back over the past travel after surgeries, what went well, what did not, etc.

First long distance surgery, two of my sisters were doing the driving and navigating. I was already flared from travel earlier in the week, but for some reason we thought it was a great idea to leave super early morning of surgery, drive the three hours, then outpatient surgery, drive back yet same day. I was exhausted, flared, surgeon gave different pain medication than I was used to and was dealing with side effects from that, surgery was a Friday, so sort of stuck over the weekend. When I was scheduled for the next long distance surgery a few years later, I was really nervous based on this initial experience. However, for the next surgery, surgeon asked that I plan to stay overnight in the area, then start PT there next morning with one of his recommended PTs, then OK to travel home after that. Surgery time was early enough that I drove up (with a sister) day before surgery. That worked so much better!

For the trip home, I was recommended by surgeon's office to stop often to move around, but physical therapist had told my sister if I was asleep, to just keep driving. This meant she drove past a rest stop, I woke about ten minutes later stiff, uncomfortable, so had to find somewhere to stop, let me get out to "walk" (with crutches) a bit. Had quite a bit of swelling by the time we got home. With the next long distance surgery, I was more awake, and we just made sure to touch base, stop often. That went better.

For travel after surgery, I recline the seat fully, have something to prop surgical side with--foot if leg-related surgery, arm if arm-related, etc. Pillows for support, throw blankets to roll for support, or to cover if chilled from icing. I have my good ice packs that stay cold longer with me.

This time will be a longer distance and shoulder instead of hips. Apprehensive. Planning to carry forward all that has worked in the past, plus a few new ideas. Hotel reservations are made for same hotel as last two surgeries as they have done well. They have let us borrow a wheel chair to get me from car to room after surgery, and from room to car when checking out. They have let me keep my ice packs in their freezer so they are really good and cold prior to travel. Traveling there day before surgery, staying overnight, then surgery, stay overnight after surgery, then surgeon said alright to travel home. Planning to bring ice machine again as that has helped in the hotel. However this time, we are planning to run it in the car as well on the way home.

Update written post-op, post-travel
The plans went well! For being nervous about the distance, of travel itself, of hotel set up for shoulder recovery, etc., things went so well. So grateful! I had brought my zero gravity lawn chair that I have used with other recoveries, my cold therapy machine and used both at the hotel and it worked well. (Links to both are in this post on preparing for surgery.) The cold therapy machine worked quite well in the car, too! I started out with my ice packs since they were good and cold and changed them every stop, or about every hour or so. About halfway through the trip, ice packs were exhausted, warm and squishy, not helpful. So, switched to using the cold therapy machine. It could not get as cold as ice packs had, but was far more effective than spent ice packs! My sister had a converter so we plugged that into a cigarette lighter, then the ice machine into that, thus could run it continuously. Normally, continuous icing is not a good idea, but with bulky post-surgery bandages, the cold from constant icing still cannot truly penetrate to level of incisions/surgical site. I have learned to ice 24/7 until bulky bandage is off. If the ice pack or pad to ice machine extends beyond bandage to bare skin, I make sure to have a barrier between it and skin that is as thick as the bandage to avoid frost-bite. I also check skin often to make sure things are OK.

What I learned
A zero gravity chair makes for a comfy recovery spot post-op shoulder. However, because it has no sides to speak of above arm rests, we had the chair between end of bed and a desk at the hotel and them stuffed pillows between desk and chair and between bed and chair for support to help hold in place the pillows I was using to support me. Once home, I figured out taking a large blanket and putting it on top of the body pillow I use for a cushion, then putting in all of my rolled blankets and pillows for support. I wrap myself and all of my support items into the chair, holding all in place. It actually works quite well, is very comfortable and I have been sleeping much better than pre-op.

Advance planning can really help! The travel went so much better than I had thought and hoped. Thinking ahead and having things available was worth it and helped things go smoothly.



Copyright © 2018 by Chronic Wholeness. All rights reserved.

Saturday, August 18, 2018

Tips for Preparing for Surgery

Surgery can seem scary and preparations may feel overwhelming. However, with some planning and tips, it can go pretty smoothly. I have had multiple surgeries of various types. I find myself once again preparing for more surgery. This time, it will be my first shoulder surgery. Thus, although I know the basics of preparing for surgery, there are some things I am less certain regarding shoulder recovery.

Scheduling
Surgery is scheduled, pre-op physical with primary care physician is scheduled and completed. Physical therapy is scheduled to start one week post-op as surgeon directed, and we scheduled out the first couple of weeks post-op, will refine once we know details after surgery. I scheduled an appointment with primary care for post-op to remove sutures since surgeon OK'd this. The first two post-op appointments with my surgeon are also already scheduled. I was already scheduled and fitted for the sling for after surgery.

Planning
This includes surgery planning with surgeon, anesthesiologist, and the rest of the medical team. But, it is also my planning regarding what I need to have done prior to surgery. For the orthopedic surgery center this surgery will be and my last couple of surgeries took place, I need to complete and submit an online pre-op form in addition to the form my primary care doctor needs to fill out at the physical. I will need to pick up hard copies of the form from primary care to take with me. I called and spoke with an anesthesiologist at the surgery center, verifying they are aware I need some extra precautions, but that what they did last time worked well.

Meals
I try to plan and prepare some meals prior to surgery to take some stress of from early recovery. I also know a lot of times I am tired, not very hungry, but need the nutrients, so plan nutrient dense, easy snacks. For me, this means a batch of homemade granola bars with protein powder added for a boost. Carrot sticks and peanut butter, bell pepper strips and hummus, celery and mix of peanut butter and cream cheese, hard boiled eggs, plain Greek yogurt, cheese, fruit and nuts, etc. Smoothies are super easy--Greek yogurt, frozen fruit, or frozen banana, peanut butter, milk. Soups, broth, etc. I strive to emphasize protein and veggies, minimize sugar for the final weeks before and initial months after surgeries. This is my first surgery not living alone, thus also having to make sure there is enough to feed everyone. Plan is a large batch of chili, and one of chicken and green beans. These can then be portioned and frozen, thawed, reheated as needed. After surgery, I really try to emphasize protein and veggies to support healing. (Resources listed below!)

Medications
Surgeon typically prescribes medications for post-op. However, I am already on other medications. I need to make sure I have everything refilled and on hand prior to surgery. I also need to make sure additional ones for aiding recovery are also on hand. Stool softeners can be needed for some--with me pain medications do not bother, but anesthesia does. With last surgery, we started probiotics a month prior to surgery and started stool softener after surgery as I normally do as proactive step, had to stop next day as things did not need any help and I was heading toward opposite issue. I have already started probiotics again this time, too, but will still plan on having stool softener available.

Miscellaneous
Making sure no trip hazards or anything, checking to verify my ice machine is still in working order after being unused a few months, after constant use after two hip surgeries. Making sure I have water bottles frozen to chill the ice machine, that my ice packs are all frozen and ready.

Recovery
I set up a recovery station for after surgeries. It is somewhere comfortable (bed is usual location), with power strip for phone cord, laptop cord, ice machine cord, night light, etc. This time, we rearranged a bit to make sure I have option of either bed or zero gravity chair, both right next to power strip. When I was asking my physical therapist for tips, he said bed is not likely to go well, plan on recliner. Well, I do not have a recliner but do have a zero gravity lawn chair I have used after hip surgeries. He said with pillows that should be just fine.

Surgery Clothing
Clothing has a way of being more complicated after surgery. I am still not exactly certain what will work best to wear to/from a shoulder surgery, but will be finding out! I will probably end up in shorts and tank top, slip on shoes, lightweight hoodie along if needed. With shoulder painful now, I live in shorts and tank tops as tank tops can be stepped into and pulled up from the bottom sort of like pants. This is much easier than trying to get on overhead as normal. Some of my larger, stretchier t-shirts let me step in and pull up, too. However, they tend to be harder to get arms situated than with tank tops.

Mental and Emotional
I suspect many are aware that surgery requires physical healing. It is trauma to the body even if it is planned, controlled, directed. However, the surgery and anesthesia can take a toll mentally and emotionally. The recovery process can also require resilience. Part of my pre-op ritual includes celebrating the day before surgery everything I can do no matter how limited, knowing I will lose it all the next day. However, I know the loss will be temporary and with time and work, the ability can be regained. I do need to be realistic about expectations and time frames. I can be a limit pusher, but tend to be very cautious after surgery to avoid compromising recovery. I have to remind myself that recovery is worth being patient and letting my body heal at its own pace. I do my best to support my body with good nutrition, what activity I can do, mental health, etc. I think it worth mentioning at this point that surgery is not the time to be worrying about weight gain/loss. The focus needs to be on healing. Healing takes more energy, even if not very active. Thus good nutrition is important. (See resources below.)

Travel
Surgery will take place out of state again. Thus, planning for travel as well as for surgery. This means hotel reservations, driver for long distance travel, not just trip to/from surgery. I will bring my ice/cooling machine with me for use in the hotel as I have done with hip surgeries. But, this time we are planning to try running it in the car as well on the return trip after surgery. I will also bring instant ice packs.

Shopping list ideas/links
Tank tops that velcro! I was given a couple of these to try. So nice!
Slip-on shoes These were invaluable after hip surgeries, but suspecting it will be a while before tying shoes after shoulder surgery as well.
Zero gravity chair I got mine on sale locally, but this looks the same. I love mine and have used it so much. A body pillow makes the perfect cushion.
Ice machine This is the one I have and it is still going strong. Totally worth the investment.
Protein powder This is the one I have used most, is unflavored so can be used in almost anything, has no crazy additives that bother allergies pr mast cell issues for me.
Shower seat This one looks like mine. Uncertain if it is the same. Really not sure if this is even needed. I have mine from hip surgeries, so will see.

Nutrition for recovery resources
Nutrition for injury recovery (applicable to healing from surgery)
Pre- and post-op nutrition
Nutrition for healing

With some advance planning, surgery can be made less stressful. This allows being able to just relax and recover afterward.



Copyright © 2018 by Chronic Wholeness. All rights reserved.

Tuesday, May 1, 2018

Raising Awareness: Ehlers-Danlos Syndrome Diagnosis

May is Ehlers-Danlos syndrome awareness month. I figure this is a good time to share more about my story with being diagnosed with Ehlers-Danlos syndrome (EDS).

I had a relatively healthy and normal childhood, I thought. However, I had an awful lot of emergency room visits for dislocated elbow, fainting episodes, injuries requiring stitches, broken bones, head injuries, etc. I also had frequent stomach aches since I can remember, and chronic nausea starting early teens. Chronic fatigue also started early teens. I learned to live with it.  After various work-ups, I ended up having surgery to remove nasal polyps when I was 14 years old. That was supposed to help with sinus issues, and hopefully fatigue as well, if fatigue was related to decreased ability to breathe freely through my nose. It didn't help with fatigue. It didn't fully resolve sinus issues and I was informed polyps were back again ten years later. I chose to avoid surgery.

Fast forward a few years, and I injured my Achilles tendon just reaching to wash off the top of something. It would not heal. I limped off and on for years, confused as to why it would not heal, but no idea what to do.

Another several years later and a car accident (I was rear ended, it totaled the car), introduced me to constant, never-ending neck and back pain. I could not figure out why my body would not heal. I could not figure out why the pain would not go away.

It took another 15 years, more surgeries, tons of testing, lots of work-up by numerous specialists, to finally be diagnosed with EDS. That is the very brief summary, presented as dramatic understatement. There was so much discouragement, frustration, even despair at times during those years. Multiple misdiagnoses. I was incorrectly diagnosed with fibromyalgia (this was later ruled out by a different physician). I was tested for myasthenia gravis, glycogen storage diseases, mitochondrial disease, multiple sclerosis, etc. I lived many years with no diagnosis, but with my medical team knowing there was something underlying the numerous symptoms.

How is EDS typically diagnosed? It is often suspected by physical therapist, orthopedist, possibly primary care physician. Referral is made to a geneticist. Based on clinical signs and symptoms, the type of EDS is determined, then confirmed with genetic testing for most types. The most common type of Ehlers-Danlos syndrome, the hypermobile type, does not have the gene(s) identified yet. Thus, there is no genetic test for it. Classical EDS is second most common, vascular EDS is third most common, but is rare, more serious.

How is EDS treated? This varies dramatically. For some people with EDS, a rheumatologist manages things. For others, their primary care physician is the one who manages things. What are the treatments? Essentially trial and error. Physical therapy to help strengthen to support the joints is important. There is no cure. There is no specific treatment plan that works for all.

How did I come to be diagnosed? My orthopedic surgeon for my hips suspected I had EDS, recommended I be evaluated. I knew he was familiar with EDS, trusted him, so followed through on this recommendation even though I was convinced I was not hypermobile, could not have EDS. I saw a rheumatologist who said I was not hypermobile, not worth referring to genetics, dismissed concerns. However, she had told me she was not familiar with EDS. I knew my hip surgeon was. My physical therapist encouraged me to keep pushing for answers as she knew there was something. I ended up seeing a family medicine physician who was familiar with EDS. It turns out she has EDS herself. She easily found my numerous characteristics, determined that although it is subtle, I do have hypermobility. She diagnosed me with classical EDS. This was 2017, shortly before the new diagnostic criteria were released. Thus, at the time, genetic testing for classical EDS was considered 50% accurate, I was told it was not worth the expense. When the criteria changed, it was stated genetic testing for classical EDS was then 80-90% accurate, was recommended to be done. However, a negative test did not rule out a clinical diagnosis. Since in my case we needed to know what we were dealing with to better inform surgery decisions, genetic testing was never pursued.

We are pretty sure my orthopedic surgeries are a result of the EDS. Both hips have had surgery, both shoulders have issues. These are a mix of laxity, instability, with structural abnormalities.

Over a year after diagnosis, I am still grateful to finally know what was causing so many different issues. I am still learning how to manage all of it. Using compression clothes, kinesiology tape, gentle bracing to help support joints. Working on strengthening in physical therapy. Managing mast cell activation syndrome (MCAS) with antihistamines, mast cell stabilizers. MCAS seems to be driver of flares in most instances with me.

Resources
March 2017 special edition of The American Journal of Medical Genetics devoted to EDS
2017 classifications of EDS types
March 2017 Classical EDS
MCAS & EDS



Copyright © 2018 by Chronic Wholeness. All rights reserved.

Tuesday, March 20, 2018

Wednesday, March 14, 2018

Hip Preservation Surgery

What is hip preservation surgery?  It is surgery that preserves the joint. Not a joint replacement, rather repair of the issues within the joint. In my case, this involved shaving bone to correct bony impingement, repairing the labrum, etc. It is fascinating to me what all can be fixed via only a couple of small portals. My repairs included anchoring the labrum back in place, shaving excess bone from femoral acetabular impingement (FAI), decompressing the anterior inferior iliac spine (AIIS) for subspine impingement, cleaning up a torn ligament, tightening the capsule, etc. Hip arthroscopy is technically a minimally invasive, outpatient procedure. But, it is still a major surgery.

I was both overprepared and underprepared for this surgery.  Having had prior surgeries, I knew the basics of what to expect in some ways, but this was beyond anything I'd had before. I had never been on crutches or used a walker before, etc. These were a huge learning experience. But, overall, I was pleasantly surprised with how much easier it was than I expected! Preparation and rehabilitation each deserve their own separate post.

Some things that have surprised me a bit with any surgery, but especially orthopedic surgery, is no mention whatsoever of how to support healing with nutrition, relaxation, etc. I am never certain if the reason nutrition is not mentioned with me is because it is typically not addressed, or if it is because most of my physicians and other providers know my background is in nutrition. Regardless, I notice it does not get brought up. The approach I take with myself is to make sure I am supporting my body for recovery the final weeks/month before surgery and the initial few months after surgery. This means no weight loss, greater emphasis than usual on protein, strict avoidance of sugar. There are other approaches I take as well. I recently found this link which has great information regarding pre- and post-op nutrition. Most of these are things I have done. Plus, I do some additional strategies as well. I had started moderately high dose vitamin C prior to a surgery a couple of years ago when fighting a respiratory infection, trying to support my immune system in order to be well in time of surgery. Then, knowing that vitamin C is an essential co-factor for collagen synthesis and that collagen is needed for wound healing, stayed on the vitamin C after surgery to help support healing. Further, without any evidence, chose to remain on vitamin C knowing I had a torn hip labrum. I had no expectations of the labrum healing, but figured the vitamin C would not hurt. Then, went into hip surgery--so just kept on taking vitamin C. Interestingly, when I was diagnosed with Ehlers-Danlos syndrome (genetic connective tissue disorder due to defects in collagen), high dose vitamin C was one of the recommendations! Thus, I have gradually increased dose some over time.

Preparing for surgery. This topic deserves its own post, so this will be a brief overview, not comprehensive. Preparation included "prehabilitation" in physical therapy. This helped me go into surgery as strong as possible, which in turn, aided with rehabilitation post-op. With hip arthroscopy, the goals of "prehab" included hip and glute strengthening, core strengthening, also upper body strengthening in preparation for being on crutches. I made sure I had work and school tasks caught up and to good stopping places prior to surgery. I made meals in advance to make things easier after surgery. I made sure regular prescriptions were current, refilled. I arranged to have a family member able to drive me to/from surgery, stay with me the first days after surgery. Friends pitched in to help with rides until I could drive.

Although I said, and still say, recovery was much easier than anticipated, it was certainly not easy. I like to be up and doing things. My body needs to keep moving. Patience is not one of my virtues....just something I have been given numerous opportunities to practice. I strongly dislike restrictions and limitations. However, I understand their purpose and am capable of dutifully following them.

I mentioned in my post regarding hip impingement, and diagnostic process that I was eventually sent out of state for another opinion, and this second surgeon is who recommended surgery. Thus, I traveled for surgery. However, he and his office made it as easy as possible for my family and me. I had an early morning surgery time, so my sister and I drove there the evening before, stayed overnight in a hotel, checked into the surgery center bright and early the next morning. I was discharged same day back to the hotel. My surgeon did request I stay in town overnight, start physical therapy the next morning there before traveling home, but fine to travel after PT.

Surgery. Part of the pre-op process included a very brief tutorial session with crutches since I'd never used them before. I was also given the recommendation not to try using crutches on the stairs once home--rather, sit down and scoot up the stairs. I saw my surgeon before surgery--was able to ask final questions. My burning, final question was how soon I could be in the pool after surgery. (I use being in water as part of total pain management, and past surgeries had disrupted things and made recovery even rockier. So, this was important to me from global management perspective.) Initial response was ~3 weeks, as that gave time to make sure incisions were closed once sutures were removed. Since I wanted to be able to be in water as soon as possible, had experience with being in early, ways to protect incisions, injection sites, etc., I asked if possible to be in sooner if I used Tegaderm or other waterproof bandages. This was conceded to be acceptable. Yay! (But, I also think this is why I was warned against pushing limits later by my surgeon. That question showed my true colors of being a definite limit pusher--something my local physical therapist was already very aware of.)

The surgery itself is the easy part--I slept through it. It helped having a surgeon who is excellent at what he does, who inspired confidence and trust.  I trust him fully.  I was curious about the surgery, but simply from wanting to know what was being done, not because I questioned the surgeon in any way.

I was discharged before noon! Wow! Rested at the hotel, had to problem-solve an effective system for icing. We watched a movie, but I did not remember much. A friend stopped by to visit. I know I woke in the night, but do not recall any major sleep challenges--unlike pre-op. Challenges post-op included I could not move surgical side leg, was completely non-weight bearing. It was hard to get situated in bed, it was hard to get out of bed. I needed help with getting the surgical leg situated. Surprises: I was fully independent in the bathroom! Yay for not needing help! However, I needed help getting out of bed in order to get to the bathroom.

The day after surgery, I was not hungry, but knew I needed to eat. I kept it light but protein dense. I had my first post-op physical therapy appointment. Physical therapy went well and was incredibly helpful! I was given tips for crutches--how to walk correctly with partial weight bearing, stairs tips, etc. I was told it was fine to use my good leg to support and move my surgical side leg. I was given exercises, examples of things to do to help fill in any gaps in surgeon's rehab protocol. I was told how to do quad rocking, allowed to see how low I could get--fully into child's pose! Wow! And, no pain at all! PT let us put my ice packs in the freezer during my appointment, then supplied us with fresh ice for the trip! My discharge info had said to stop every hour on the return trip to get up and "walk" around with the crutches. However, PT told my sister if I was asleep, to just keep driving and let me sleep. We did so. But, this meant I woke after we had just passed a good stopping point, with my hip and leg stiff and sore. I was pretty swollen and uncomfortable by the time we got home.

After surgery, I had a big, bulky bandage, so was not sure where exactly incisions were, how many there were, etc. Bandage made it difficult to ice as well. My discharge info had said I could remove the bulky bandage 24 hours post-op, which was about the time of the PT appt. PT said it did not matter if I left it on or took it off before physical therapy. I opted to leave it on as I figured it was more protection over incisions since I was going to be traveling.  I am also glad I waited as bandage removal was sort of a messy process. One incision had seeped quite a bit. Residual adhesive issues that required scrubbing with rubbing alcohol, rubbing with coconut oil, etc.

Once the bandage came off, I discovered two small incisions, one of which had seeped quite a lot. It was recommended to cover the incision/sutures with bandaids to protect them from catching on clothing. My body dislikes adhesives, so I was reacting to my "safe" bandaids that I had previously tolerated. I was even reacting to the sutures themselves by the time they were removed around two weeks post-op by my local primary care physician.

I was allowed to take a shower 2-3 days post-op. I so badly wanted a shower, but was so exhausted on the first day I was cleared, that it ended up not happening. When I did finally get a shower, it was an exhausting process and required a nap afterward. In fact, everything attempted required a nap afterward. Physical therapy appointments were exhausting...and meant napping once home. I think I slept most of the first week. My existence was sleep, PT rehab home exercises, eat, rest/sleep, repeat. Once I was finally more awake late in the first week, I also discovered I was always hungry no matter how much I ate. I knew recovery from surgery required extra energy, but had not thought about how much more work crutches were as well.

I was prescribed NSAID for first weeks after surgery, non-optional as prevention against heterotopic ossification (abnormal bone growth). I was also prescribed antibiotics as a precaution, narcotic painkiller as needed, anti-nausea medication as needed, stool softener as needed. The NSAID and antibiotic were taken as prescribed. The others were all as needed, and never needed at maximal dose. In fact, I am not certain if any of them were truly needed. Out of precaution after rough recoveries from prior surgeries, I started out on narcotic, but quickly realized I had no actual pain. I was uncomfortable at times, but not pain. This was a pleasant surprise! I had such severe pain pre-op, and had been expecting even worse pain post-op, but that simply was not the case. I am notoriously unpredictable in my reactions to medications, so I was relieved that each of the medications my surgeon prescribed for after surgery, were ones we already knew I tolerated and worked well for me. Thus, no risk of reactions during post-op recovery.

These are a select few resources that I found very helpful pre-op, when learning about surgery itself. My physical therapist and surgeon also received their share of my questions. I am one of those patients who likes to know what to expect as much as possible. However, I also realize that some things are not knowable and I can be alright with that. My physical therapist gave me an idea of what post-op rehab would look like. My surgeon warned me I'd probably rehab slowly. However, I did not know actual restrictions, orders, specific protocol until after surgery. Everything worked out fine.

For reference.
Nutrition info (yes, same link as above because I think it that important!)
Pre- and post-op nutrition (Midwest Orthopedic Specialty Hospital)

Description of surgery (Bart Eastwood, DO).
Part 1 (Overview)
Part 2 (Periprocedure)
Part 3 (Technique)
Part 4 (Medication)

Video of surgery (Viewer discretion warning as this is surgical video, not scope view only. I am not remotely squeamish and I am incredibly curious. I had no issues watching, rather found it fascinating! However, I am aware others may have issues watching.)
Hip arthroscopy video (JW Thomas Byrd, MD)

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