It has been so long since I have written! In March I moved from LA to the Bay to work at Stanford Medicine X as the e-Patient coordinator for the Medicine X ED conference this weekend. It was amazing and I had an incredible experience and my e-Patient crew was epic and I could keep going, but I want to write about something specific here. I will probably write more on MedX another time, because there is a lot to say, but I want to write about my takeaways about talking about Medical PTSD here.
I have written about my experiences with it before, but this is really the first time talking about it in a big space. I actually brought it up at the preconference workshop I was facilitating with a group of amazing people.
As someone who grew up singing, I was always in front of people. In no way am I crowd shy. But I was so nervous to bring this topic up. It had been on my heart for so long, and it had become so relevant in the weeks prior to the conference. I have been working with a psychologist about my medical PTSD for a while now, and it has been helpful to talk about those experiences. There are a few different experiences, but there is one in particular that was extremely awful involving Interventional Radiology (IR) after my J tube was only a few weeks old. My balloon ruptured and it had to be replaced. A delay caused me to not get my Parkinson's meds on time, and then on top of that the procedure was extremely painful because it was so new. My muscles cramped uncontrollably from the PD flaring due to the trauma of the procedure + not having meds on time. I felt like I could not breathe because my chest muscles were tight from the PD in addition to the stress. I kept trying to tell them I needed my sinemet but instead of listening they kept telling me to be quiet. I also don't sedate at all with the twilight they use so I was wide awake for this. And by the time I was crying and screaming the nurses were yelling at me to stop and to calm down (as if that is helpful) and they held me down and continued to replace my tube while I was in agony.
I managed to get through awake brain surgery twice just fine, no tears during them drilling a cage to my head, slicing my head open with only a lidocane shot, and drilling a hole into my head for my DBS electrode. That should say something.
This experience is where my head goes when I enter a hospital now. A few weeks ago my Mirena IUD stopped working (it was almost at the five year mark) and I had to get a new one. It is not a very difficult procedure and takes about ten minutes, they basically just pull the old one out and pop a new one in. It is a little bit worse than a standard pap smear. But half way through I had to ask her to stop. I was feeling my whole body get hot and my heart was racing. Despite how great this doc was and how vastly different the experiences were, the smells and the environment took me right back to that day in IR, and I could not keep going. The Mirena insertion 5 years prior was no big deal, but this was like the most difficult feeling thing in that moment. Luckily this doc was so sweet. She had her nurse get me an ice pack for my head and she stopped and she told me that we would not keep going until I was ready. I caught my breath and we continued and I was okay. I was lucky to have a doctor who was so understanding and kind. Compassion changes lives.
But back to MedX. Now that I have described a bit about why Medical PTSD is relevant to me, lets talk about this workshop. In the weeks planning it, so much medical crap was happening to my friends. That is the only word for it, crap. It is completely unacceptable that more of my sick friends have PTSD than not. These people are not mildly sick. They all have serious, life altering, life-long, often deadly conditions. These are people that do not get to choose not going to the doctor, it is necessary to be alive. They go to the doctor to treat their illnesses and walk away with Medical PTSD.
It is completely unnecessary and I refuse to buy into the idea that it just comes with the territory or something. Not when it is SO easy to limit the suffering of patients. All it would take would be a little compassion. If the IR doc had just stopped to take a moment to get me a freaking sinemet, to stop and say what can I do to make this easier, to stop and say lets just take a moment to breathe, we can do this together, you are going to be okay. If he had taken five minutes to stop and talk to me like a human being, my life would be so different. Maybe I could get through a doctors appointment without feeling like the world was collapsing around me. Maybe I could actually go to the dentist and get past the waiting room, or not have to think twice before going to the ER and say 'is it worth it' when I know I need help. Maybe I would not have every little medical encounter tainted by the pain of that experience. I refuse to believe five minutes of his day is worth more than my pain.
So once again I am the queen of diversions and I still haven't gotten to day 1 of Med X ED. My precon workshop was a lot of fun, and I brought up Medical PTSD. We were talking about incorporating patient goals into medical decisions and I wanted to stress what not listening to the patient can do.
Simple, right? Let me break down why this was scaring the hell out of me. This is a room full of doctors. And here I am saying you guys have the ability to ruin someones life, and your profession is responsible for some serious trauma. And if you do that to someone, it really is on you. So lets do better. Now saying this to the wrong crowd is just asking for a bunch of defensive docs to try to discredit you, to say you are being over-dramatic, and all kinds of other things. So I was pretty nervous going in.
Instead, it was embraced. And throughout the weekend it was talked about a lot! And everyone acknowledged that it happens and that it is unacceptable and that we can do better! Isn't that amazing?
So the real inspiration for writing this came from a doc who I wont name out of respect for her maybe not wanting that to be public. But I will say she is one really awesome anesthesiologist and person who I have a huge amount of respect for. I drove her and two ePatients to the hotel on the last day. We had a great conversation and I mentioned something about IR and she says something to the effect of 'there are some seriously awful IR docs out there. I genuinely do not think they understand that their patients are actual people.' And I was so stunned by the fact that it happened everywhere, and that I didn't just have an exceptionally bad IR department at my hospital. I told her the story of the tube replacement and she was not in the least bit surprised. She said 'some of those doctors lack basic human empathy. You could have said hi my name is Jasmine and they would have said why is the J-tube talking.' This of course got a laugh but it also sent a chill down my spine. It was so accurate to the treatment I got that day. We were talking about why that may be. Perhaps the specialty that just assigns them a body to cut and leave breeds people who do not know how to practice with empathy. Perhaps too many people who just like to cut enjoy a profession where they do not have to talk to patients. And of course we were not saying that ALL IR docs are evil. Just that a large percent seem to really suck.
She went on to tell us that she had seen over and over again with complicated patients that they were terrified of anesthesia because they call the sedation that IR uses 'twilight anesthesia' (which makes you a little loopy and sleepy and numbs some pain but doesn't knock you out, and if you are like me, leaves you wide awake with a dose that could knock out a 300 lb man). She said she is always having to explain that no, this stuff anesthesiologists use actually puts you out, and that she will make sure your unconscious body will be taken care of, because the association of the past trauma is so strong. It blows my mind that she has to keep trying to undo some of the damage caused by irresponsible IR docs. It is amazing how many times this can happen and for the specialty to not realize it has a problem.
What I really wanted to do with this article was really explain how much it touched me that my experiences were validated and affirmed. When that happened to me, I was treated like I was just being sensitive, like I was just supposed to have been fine after that. Someone saying I am sorry that happened, it is all too common and it is wrong and is a problem was so wonderful, and I am so lucky to have volunteered to drive a wonderful doctor home.
Icing on the top of the cake, I was saying that the last time I was in IR for my line removal and tube replacement, I asked for my IV benadryl before hand. We know I am really allergic to contrast dye. My skin is also super sensitive to so much, and I always end up itchy. The contrast dye gives me full body hives, and that is so scary. Having allergic reactions and knowing that with more exposure you are so close to anaphalaxis is terrifying and I was really anxious about it. I took prednisone pre-procedure, but I just felt more confident getting the IV benadryl first too, because I know for sure the contrast dye is a severe reaction.
After I asked, the doc said sure. Then he came back and he said 'you had an MRI with contrast amd were fine.' Trying to figure out which MRI (I have had 8, two for DBS and 6 in my teen years for diagnostic purposes). He answered it was a pelvic one and I looked at him like he had grown a second head. 'You mean the one I had when I was 15?!? That was almost a decade ago! I had the reaction to the contrast dye in the ER last year!'
He tried to explain to me that the time should not matter. Luckily the nurse went to bat for me and she pulled up the doctors notes from the ER where I had the contrast reaction and it clearly stated that the doc had given me the dye and I had a severe reaction. So he gave me the benadryl, begrudgingly.
That makes me feel really confident going into a procedure, knowing that my doctor did not even believe me that I had an allergy, that he went digging in my records trying to prove that I was making this up or something to that effect. This is they guy I was letting cut my central line out of my body and replace a highly sensitive feeding tube while I was going to be awake. And somehow it was put on me to just be okay.
I think my biggest frustration with the allergy thing is the lack of acknowledgement that allergies are scary and traumatic. Also that they are not something you should just believe if its in someones chart or they say it is. Him trying to invalidate that was completely pointless and wrong. Is giving me a little benadryl going to have any negative effects what so ever? No. But having a crazy uncontrolled allergic reaction because the doc refused to listen does.
The reason I add that little anecdote is that this doc looked horrified. She told me that contrast for MRIs and for IR procedures are two completely different solutions. They are about as chemically similar as orange juice and lemonade. So the MRI nearly a decade ago did not have anything to do with my needs at IR.
For some reason, that makes me oddly happy.