A Lesson in Advocating for Yourself

Nurse in the Home

Note from the author, even though we have a disclaimer on the site, I like to remind people I am a patient, not a doctor.  This is not meant to be medical advice. You should always consult your doctor in situations like this, just like I asked mine! – Colin 

You would think after 17 years of being diagnosed with a Primary Immunodeficiency advocating for yourself would be easier. In a situation that happened during a home infusion with my nurse, I learned that you never stop advocating for yourself, and it never gets easier.  So what happened you ask?

It was home infusion day, and four weeks prior I told the nurse that I was traveling that next infusion weekend, could we do it later in the day versus our typical morning appointments. She agreed, and we parted ways until the next infusion. By all accounts, the nurse is good at what she does, but personality wise was not a good fit for my house. All other things aside, she was good at her job, and that is good enough for me.

The Friday before the infusion we touched base, and I inquired if we were still good for later in the day appointment. She did not remember and was a little frustrated, but agreed. On the day of the infusion, I was driving home from out of town and texted her that I was running about 30 minutes late. I got home, and 30 minutes later she was still not there, which was surprising by her responses. I texted her again to check in and let her know I was home and she said, “well I wanted to give you more time since you seem to be running late.” Cool right? I will mention that every month my infusion time is set for 10 am, and she arrives at 11 am. 

Small talk ensued on how the last month has been, her daughters evacuated from Florida, but they were ok, she still hates her day job, etc. One stick, she connects me, and as she starts the pre-programmed pump, mentions that she was speeding it up. I told her I couldn’t tolerate higher rates because I get hives, shortness of breath, and it turns into a three-day recovery. She said ok and let me know if you feel off. I lay down, not catching that last part. 

Exhausted from traveling, I slept through the entire infusion. Woke up to find out we were done and noticed that I was feeling itchy. I told the nurse, and she said, ” well, you don’t look red so you should be fine.” That is when I realized that she kept the pump at a higher rate. I immediately confronted her, and she responded, “Colin, it shouldn’t be a big deal, I mean I only increased to another 50ml an hour.” I asked about the ramp up speed, and she seemed not to hear me. We wrapped up, and she said her goodbyes and left. 

Sure enough, hives start, and all the symptoms I have had from flow rate issues start happening. I know the regimen to deal with it and then went back to sleep. I ended up not making it into work n Monday, Tuesday was a complete struggle, and I am finally feeling back to normal on Wednesday. 

I am kicking myself for not catching the “let me know if you start to feel bad” comment. I look back and think I should have demanded the nurse not change it; she has to trust my reactions and me. I mean this has to be a give and take relationship when you are in the home. After heading back to work on Tuesday, I decided to call the nurse coordinator at my specialty pharmacy. 

I was EXTREMELY impressed by how they handled it and their frustration that I had to deal with it. I explained that I should have forced the issue and the nurse coordinator stopped me to say that is not why you have a nurse in the home. They are there to protect you, your health, and your well-being during this process.  Great Answer Right? That is how you create customer loyalty in an industry driven by contracts. That is customer service. The nurse coordinator reviewed the options I had but noted that nurse would never be back in my home again.  24hours later I got another call from the nurse coordinator following up with the solution, informing me about the investigation they did into the issue, and what will happen. The contract nursing company president and the owner called me to apologize and agreed to meet the new nurse at my house for my infusion. I love the owner of this nursing company. She gets it, she gets zebras and is great in my house. 

I share all of this NOT to advise how to deal with these situations, but rather to show an example of how advocating for yourself never stops. An example of why cases like this are ok to make a big deal out of it, and if not to advocate for yourself, do it for the other patients that may not know that this is unacceptable.  

I hope no one has to deal with these issues, but if you do, I hope you have incredible people around you that get it. There are zebras by association that dedicate their lives to us. I found two more “adopted” zebras in the specialty pharmacy nursing coordinator and the owner of the nursing agency. I hope you too have people in your care, your life, and even just by proximity that get it. 

Never be afraid to speak up! Remember, if not for your interest, do it for the other zebras that may not be able to advocate for themselves. We all play a role. ☺