Note: I find it very difficult to explain why the chronic illness experience can be so physically and emotionally draining. I decided to share what has happened with the outpatient port experience because I think it is a good example of how much energy goes into constantly advocating for myself, managing my health, and recovering from medical procedures. The last three weeks I mostly went MIA because I didn't have an ounce of energy left.
I chose to have my first port de-access and re-access done at the same facility where I receive all of my local medical care. This is not a small amount of care: I have a PCP, a cardiologist, a neurologist, a gastroenterologist, a gynecologist, a nurse practitioner, a urologist, and many nurses. Before I started this blog in 2005, I spent seven years being treated poorly, disrespected, ignored, and dismissed. And I've certainly been treated in those ways since the, but it's been rarely rather than regularly.
So, when I finally found a medical team both here and at locations outside of here I began to feel that the medical community could be a safe place. I found a home at a local facility where I came to expect that I would be treated with respect, compassion, dignity and competence of care. From the moment I enter the facility for an appointment until I leave, I'm treated well. All of the receptionists know me and greet me. The nurses do the same. The doctors take extra time with me. Sometimes I've had to go weekly for shots or other treatments.
The health care providers we work with when we are chronically ill have a tremendous influence on shaping our entire experience.
I arrived at the facility for my first outpatient port access knowing that I had had bad experiences there in 2005 when I was going regularly for IV saline after my gallbladder surgery, but I hoped that the changes I've seen in the entire practice would permeate the infusion center also.
The care was everything I expect 'care' not to be.
Upon arrival, the nurse called me back. Mom pushed The Rolls through the door to accompany me. The nurse snapped, quite rudely: "You cannot go back with her. I have other patients back there. It's a HIPPA violation for you to go back there."
A HIPPA violation? What a load of bologna! That was an outright lie. Not a good start. Loved ones have always accompanied me, even when other patients are present.
As soon as we got back to the infusion room, I asked if the chairs reclined. I explained that I had a lot of difficulty sitting or standing for any length of time and really needed to recline while she de-accessed and re-accessed the port.
The nurse snapped at me, informing me that she always accesses her patients ports while they are in their chairs. It would take her longer to get me into the recliner and get me set up than it would for her to just access my port while I was sitting up. It would only take her five minutes.
I know it does not only take five minutes to do this procedure!
When we are exhausted and vulnerable how do we continue to ask for what we need? What do we do when we are in a position of no power and cannot just get up and walk away? What do we do when our needs are so clearly ignored and dismissed? Should I have kept asking? Should I have fainted for her? I think that she really thought I was just being 'dramatic' to ask to lie down or recline.
During the de-accessing and re-accessing, she not only continued to be rude, but she was also unsterile, which terrified me. I watched her touch me without having washed her hands. I watched her use a dribble of anti-bacterial solution without actually rubbing it into her hands. I watched her then touch the fingers of her gloves with her unsterile fingers. She never once washed her hands or rubbed a decent amount of anti-bacterial solution on them. She only used it that one time.
I should probably also note that she was wearing sandals. With bare feet. All of her toes and all of her back foot were in the open. I am quite sure this is an OSHA violation.
When I got dressed that morning I had been unable to find a button down or V-neck shirt. I figured I would just take my shirt off (this is what I do normally if I don't have on button down PJs). Instead she insisted that I hold (yank), the collar down while she worked at the port site. This meant that my shirt was often in the area that should have been a sterile field. Despite my offers to simply take my shirt off, I was told that is not the way she does things. Then she informed me that I 'should have worn a V-neck shirt'. Yes, I said, but I did not have one.
Because she had struggled to put the dressing over the needle (my shirt was in the way), I arrived home to find that the dressing did not even cover the accessed port. And she had not even checked to make sure before I left. Air was seeping in. Thankfully we had extra dressing covers at home, which we placed over the poorly covered needle.
I watched the clock ticking as I began to feel sicker and sicker. She left me to attend to another patient--take her vitals, set her up for her next appointment, send her on her way.
Because we were going to be away for doctors appointments on one of the days I was scheduled to get my port de-accessed and re-accessed, I asked how we might approach scheduling. It is very important not to have the same needle in for more than a week, for risk of infection.
We altered the schedule to different days, but they were at times that would be even more difficult for me energy-wise. I asked if we would be able to find times that would mesh better with my 'functioning' times of the day. She yelled at me that it wasn't her fault that I couldn't come on Tuesday those weeks, and I would just have to deal with the times she had.
As the appointment ended, I looked at the clock. Twenty-five minutes I had been sitting upright. (This was after having seen my PCP right before that).
I calmly said to the nurse: "That was too long or me to sit upright and I'm feeling really, really sick now. Twenty-five minutes is just too long. In the future, we need to work out a way that I will be reclining when I am here."
By this point I was already almost in tears from feeling so sick.
She turned to me and yelled. And yes, I mean yelled. "It's not my fault you were sitting up so long. It's not my fault it took more than five minutes. It's your fault because you had to reschedule your appointment times."
I started to cry. Again, I calmly said: "I don't need you to yell at me. I just need you to say you're sorry that I was sitting up too long and we will make sure that it doesn't happen like that next time."
She just glared at me, said in a flippant manner that she was sorry, and wheeled my sobbing self out into the waiting room, past several nurses, doctors and other patients. Perhaps asking me if I needed a minute before going out into the waiting room would have been a good idea?
I ended up at home curled in a ball sobbing on the sofa, my dad holding me, his own tears sliding down his cheeks. My mom too, cried that day.
As a consequence of my ANS working so hard to keep me upright for such a long time and all of that STRESS, I ended up with flattened for the rest of the day (and week), with major tachycardia and other autonomic symptoms.
I've been getting my port de-accessed and re-accessed weekly for six months now. I know what a sterile field should be like. I know what the dressing should look like.
Beyond that, I know that I have a right to be treated with respect, compassion, kindness, and dignity. I do not exaggerate when I say that this nurse yelled at me, rolled her eyes at me, and showed complete disrespect. She never even asked me why I had a port or what was going on with me. It was such a stark contrast to every other experience I have had at this facility.
It took me a very long time to find good medical care. And a very long time to believe that I deserved such care.
What made this experience so traumatic was that I had finally, after all of these years, started to feel safe. I had started to feel especially safe at this medical facility. Suddenly I had been taken back to some of the worst days of my life, when no one knew what to do for me and no one treated me with respect.
I felt my entire body trying to protect itself from feeling unsafe. My shoulders and chest hunched forward and tightened. I wanted to be 'tough' and brush off the experience, but I couldn't. It brought back so many bad memories and opened so many old wounds.
It is going to take me a while to start feeling safe again, especially when it comes to my port. I spent a lot of time praying that I did not leave with an infection.
I have since switched facilities for my port access. I received excellent care both in kindness and competence. However, I had a 30 minute wait (sitting up) to even check in. I was there for over 2.5 hours. I had to do a lot of 'micromanaging' because it was my first time there--making sure the blood work orders were correct and being sent to my PCP, that the Rocephin dose was correct (it was not), etc. Because this facility is not affiliated with the place I go for my other medical care, the communication leaves a bit to be desired. After 2 1/2 hours of being out, I needed this entire past week to recover again. (Note: Even when I'm doing 'well' we don't go out for that long!)
The biggest difference between me 12 years ago when I first got sick and me now is that I am strong enough to say that the care I received was unacceptable, that I deserve to be treated better, and that I deserve to feel safe. I refuse to put myself into a situation again in which I feel unsafe.
I'm so not looking forward to Tuesday!
Photo: A crappy unsterile port access and dressing.