I left off on my last post about my shoulder surgery right after I got home. I was so very glad to have made it home alive that day I left the hospital, it never occurred to me that there would be long lasting affects after the surgery.
As I woke up the next day (I'm sure suffering from some PTSD) I realized that I was far from ok. When I closed my eyes I would be right back in my hospital bed wondering if I would get the steroids I needed or whether I might die instead. I know I didn't die but that didn't matter in my head and here's why.
I was having surgery with my favorite surgeon, the one that I trusted and always had my back in a very overly protective way. I had also gotten to talk with my endocrinologists associate and while my head was screaming "no" to having this surgery, I knew that I had done due diligence. Which is why when I asked for steroids in recovery I was shocked to find that no one would give them to me. I can't even begin to explain the feeling of betrayal I felt watching not one, but two doctors letting me suffer in fear and doing nothing because both of them were afraid of a malpractice suit.
About 5 months before this surgery my surgeon had brought up malpractice in an appointment. We had actually argued that day about how his lack of treatment was upsetting me, we figured it out and managed to make a change for the better. Still, I have to be honest that the first thought in my head was from that point forward my health would always come second to his malpractice premium. I was correct, two doctors one of them my favorite let me lie in bed for 5 hours wondering if I would die. The odd thing is if he had pushed the steroids I would have been fine, patients with Secondary Adrenal Insufficiency don't make enough steroids. Patients with Cushing's Syndrome shouldn't have a huge amount of steroids since their bodies make more than enough steroids. My surgeon by not knowing about Secondary Adrenal Insufficiency nearly killed me because my temporary endo didn't listen and decided on his own protocol that I had never used before.
I couldn't believe it happened, I couldn't believe it happened in a hospital and I couldn't believe that the surgery could've gone well and what came after could be so horrible. It was like everything I knew or expected about doctoring went right out the window. I realized my favorite doctor, the one I counted on the most, could easily have killed me due to his ignorance, and my Endocrinologist could just randomly pick numbers and hope for the best (my surgeons PA was in touch with him and he told them not to push steroids). My surgeon however at anytime could have decided to give the steroids to me, he was too worried I'd sue him so he wanted to make it the Endocrinologists fault if I died.
All of my life I've doctored, I was diagnosed with JCA (C stands for Chronic) in 1972 so you can imagine that's a lot of doctors, never once have I ever had a doctor mention malpractice to me and I have never sued a doctor. Doctor's practice, we all know that they do the best they can. Multiple times I was in a position to sue this doctor for damage done and I hadn't, his partner that owns the practice was very helpful to me and I would never sue someone from his practice, plain and simple.
My life has been spent in doctors offices and hospitals and labs and infusion centers. I've pretty much experienced everything a normal RA patient could go through but it had never occurred to me that my doctor would stand by and watch me suffer much less leave me long enough to go into shock. It still baffles me just reading that.
I came home ruined, it was like everything I knew about "medicine" up until that point I was unsure about. I was a Health Advocate and had a decent sized following and all of the sudden instead of answering questions I was unsure for the first time in my life. I stopped mentoring patients, I stopped answering questions and I stopped writing. How could I give advice to other patients when I so blindly put myself in this situation. I should have known better, I should have waited for the letter the Endo sent, I should have asked to see it at my surgeons office before I had the surgery. I should have known when malpractice was mentioned we were done, instead of thinking I was proving a point by staying and not suing (which wasn't even a thought in my head until he brought it up). What kind of advice could I possible give to another patient when I had failed so badly with my own doctoring.
I closed my FB page, left my support group and crawled into bed to recuperate from my shoulder surgery. At my two week post op appointment, I didn't even want see my surgeon, a few weeks after I was having back problems and was in bad shape and I had to see my surgeon, I couldn't even look him in the eye because I knew I was going to scream (reality is I knew I would cry). We never talked about what happened just like all the other times when he messed up and I got to make those times ok for him too. The difference about this time, I knew we were done it just took me some time to make it work.
Over the past 11 months I have slowly managed to drag my messed up head and body out of the hole that I fell into after this surgery. I started to believe maybe I did still have something to say, even if I couldn't be the shining example maybe being the horrible warning will help someone else not have to go through what I did.
I started a new FB page at the end of September, I created a page I wanted as a patient, thankfully it's what other patients want too. The support group continues to be an awesome place for support and I'm not sure I would have made it through without them. I'm starting to write again 11 months later. It isn't eloquent or my best but I feel it's important to warn patients of what can happen when you trust your doctors a little too much.
I want to share with you a few ideas about surgery I've learned from this experience. Hopefully, these ideas will make your experience easier. When I have surgery I need to get clearance from my PCP, Rheum, Endo and Pain Mgmt. As you can imagine it's a big run around. If you can have your labs and EKG done at the hospital they will send copies out to everyone so they can take a look, you will have less issues this way as the hospital will have your labs if they need them. Get any information you need from your PCP, from your Rheum find out how your med dosing schedule will change. When I see my Endo he gives me the protocol for my steroids and how they will be delivered. My pain doc makes sure I have enough pain meds and says if they need him have them call, they never do.
As you can see there are a lot of things too miss or get turned in incorrectly. When you are in the OR they do a thing called a "time out." They make sure they have the right person, the right limb (that's why your surgeon always gives you their autograph) and that everything is how it should be. As patients we should get a "time out" too. If our information is not given to us, we should make sure we get to look at all the info our doctors have sent in to the surgeon. Had I seen the incorrect order from my Endo I would have cancelled the surgery, post haste. I would have known right away that it wouldn't work and I could have argued with the Endo or waited until my Endo came back from vacation. Next time I will know better (and next time is 3 weeks away).
I'm happy to say that my FB page is doing well, slowly growing and I really enjoy what I'm doing there. My support group has grown to be like family, I wasn't expecting that they are an awesome bunch of tough ladies (and 3 guys, lol). I'm mentoring a patient and I haven't done that in a long time (yay!). Most importantly I'm writing which feels good and not difficult like it has for so long. On top of that I actually feel like I have something worth while to say. I'm beyond thankful for bouncing back but I have to mention, I hope my next surgery is a whole lot easier than my last one.
Thank you for your support it has been greatly appreciated.