Surgery Is Challenging
It may seem an obvious thing to say, but I have to point it out: surgery is challenging.
For me (and I’m guessing many other folks with rheumatoid arthritis or chronic illness), there are always complications and surprises no matter how much you plan. Unexpected things happen, or the body makes different decisions than you would, or it heals slower than you’d like and so forth.
Surgery was a long time coming
Last fall, I had a reverse shoulder replacement surgery on my left (dominant) arm. It was a long time coming from longstanding RA damage sustained even when I was a child 40 years ago. I have a clear memory of a physical therapist sitting on my shoulder to try to open it when I was in third grade.
So, my shoulder has been limited in motion for a very long time. The increasing pain was what finally pushed me into having the surgery. But another aspect was that shoulder replacements (particularly the development of and increasing success of the reverse shoulder technique) have greatly improved in recent years and demonstrated very positive outcomes for people with severe shoulder joint damage like myself.
Shoulder surgery for RA damage can be scary
Still, surgery makes me anxious for very good reasons. Even the best procedures can go wrong or have complications.
So, I worked hard to maximize my odds for success. I found an excellent surgeon with a strong record of operating on patients like me (juvenile onset RA with severe damage). I did a lot of research on the recovery and planning for what it may take, and I set expectations with people around me that it may be a harder and longer recovery than hoped, because in my experience I always encounter unexpected challenges.
Yet, there were surprises and issues I had to navigate despite my best planning efforts.
Trouble establishing an IV
Like many folks with juvenile onset RA (or people with longstanding health issues), my veins are shot from many blood draws and previous IV lines and were basically largely collapsed by the time I reached my 20s — which was more than 20 years ago. This means finding a good vein for a blood draw is extremely difficult, never mind one that can maintain an IV for surgery and aftercare.
I explained this to just about anyone I met during the surgical preparation and then again when I arrived for the surgery. I’m not sure if I was believed, but eventually (after a couple failures) they got it. The team needed to use an ultrasound, pulled in the more experienced anesthesiologist, and used a micro stick to establish an IV in one of my tiny, grumpy veins. Still, I was bruised like you wouldn’t believe from all the attempts, and it took about 6 weeks for my arm bruising to heal.
Problems with intubation
Again, I told everyone I met that I have a small airway and am difficult to intubate for surgery and anesthesia. Again, I am pretty sure no one listened. I even asked to speak with the anesthesiologist during my pre-surgical appointment, but no one was available (probably due to understaffing issues), so I fell largely through a huge crack in the "information gathering to provide good care" process.
When I woke up from surgery, I had laryngitis that lasted several days because 8 different people had to try to get the intubation correct (the surgeon was not pleased and told my husband the intubation process took almost as long as the surgery). I was told they eventually used a fiber optic device, which I had requested they do from the start.
I was also told I have a small esophagus (which I had already told them) and learned that my vocal cords are in a different location than usual (which added another complicating factor that I hadn’t been previously aware of). The night after surgery, I was having trouble breathing because phlegm built up in my esophagus from the trauma injury of the intubation. I spent the night coughing and getting sick to clear my airway. It was not a good experience. For the next couple of days, I used a spirometer to help exercise my lungs and recover from the intubation damage. It was hard going until my breathing got easier and my airway healed some.
Issues with care in the hospital
The first nurse I had when I arrived to my room at the hospital was excellent. Unfortunately, she was the only one during my 3-day stay. I’m not sure the rest understood my chronic illness, disability, and that I required more help for my care. I got by, and when my husband was visiting, he helped a lot. But several problems occurred.
First, no one explained my vocal cord injury that left me temporarily speechless to the nursing staff. I couldn’t speak and explain my needs. Plus, I couldn’t write, as my left hand was both numbed and out of action from the surgery. I didn’t trust them to help me transfer to my wheelchair and then to the toilet, especially because I couldn’t explain how to do it safely.
And the interactions were frequently strange. One aide asked me, "What happened to you?" I croaked an answer about shoulder replacement surgery, but later I realized she was asking about my rheumatoid arthritis and disabilities. It truly felt like no one had met anyone with a significant disability before.
All of this scared me, so I kept pushing to be released home as soon as possible, where I knew I would be safer being helped by my husband.
More limitations than anticipated during recovery
When I woke up from surgery, my arm was in a huge sling and cushioned with a large foam block between it and my torso. The sling was so long, I could only see the tips of a couple of my fingers. With the anesthesia and pain drugs, I wasn’t concerned — but I soon would be, because my hand was engulfed by the apparatus and I couldn’t move much.
It only took a couple of days for my hand to become stiff and weak. Then, when I saw the doctor, he explained I would be in the sling for at least 6 weeks.
It was far more limiting than I expected. It made even using my motorized wheelchair difficult — we ended up switching chairs to an old one where I could remove the left armrest and switch the drive controller to the right.
Thankfully, I adapted quickly to opposite-hand driving! Getting up, transferring, and walking with the huge sling was hard because it put me off balance and made it harder for others to help me. We got a transfer belt, and Richard was able to use it to help lift and steady me.
Longer recovery time than planned
Did I mention the recovery took longer than expected? And I am really not even done yet!
The hardest phase was the first 6 weeks with the sling. I had to adapt to the restrictions and then transition out of them with physical therapy and home exercise. But I also had to rehab my hand, arm, and elbow because they grew stiff and weak while the shoulder was recovering.
At 3 months, I am feeling more normal and can do a lot more with my whole arm. However, it has been a long haul, and I’ve had to be patient (not my forte!) with my body healing and working its way back.
Lessons learned for getting better care in the future
After some recovery, I added the tip on using ultrasound and micro stick for IV, plus using fiber optics for my small airway for intubation, to a health app I have on my phone for emergencies. It is my hope that this app would be used to gather key information on my conditions, medications, and other medically-vital details. I told my husband about this as well so that he could help medical or emergency providers know about these details if I am incapacitated.
If I ever have planned surgery again (really hope not), I will print this information and pin it to my gown. I am serious. I feel like the "listening to patients with complex medical issues" is not happening as it should, so perhaps writing it out (and asking my doctor to sign it) may be the best alternative to achieve better care.
If I were a hospital administrator, I would ask patients like myself with a complex medical history and disabilities to provide extra information. I would also train staff or create a small team to work with these patients to better support their care. So many things could have easily gone worse — in many ways, I feel lucky they didn’t.
While it was a hard journey, I know I’ve traveled the roughest part of the road and will continue on unscathed toward a strong recovery.