Beginning of the Journey

How did your caregiving/patient advocacy journey begin? It can happen in different ways. From what I came to learn, the beginning of my journey was like millions of others who take on this role – it happened fast and without warning. In my case, Spring 2017. Prior to that, I had no thoughts that caregiving/patient advocacy was going to become a part of my life – changing it in every way!

Having witnessed my grandparents being cared and advocated for by my mom 20-25 years earlier, I had some idea of what the role entailed. She would take them to appointments, handle various aspects of doctor communication, interpret situations to ensure the best possible care was being planned and received, and so much more. She was an excellent role model! Of course, her focus at that time wasn’t on being a role model, nor was she looking for accolades. It was all about making sure her mom and dad were receiving the best possible care and as comfortable as possible. As she went along with her caretaking/patient advocacy responsibilities, I’m quite sure she didn’t think about the fact that I was taking in everything and learning. Not just the practical aspects such as scheduling, prescription management, transportation, etc… but also the emotional challenges that come along with the role, which is navigating a normal range of mixed feelings such as love, respect, and compassion on one hand, with frustration, consternation, and uncertainty on the other hand. Little did she know at that point – nor did I – that the situation would come full circle shortly after celebrating her 76^th birthday. Within weeks, an acute healthcare situation developed and over the next two months I became her caregiver/patient advocate.

How did we get to that point?

Let’s start with March 4, 2018 – my mom’s birthday. I was visiting from California, where I had lived from 2000-2012 and again starting in 2017. It was obvious something wasn’t right. Although I had seen her on video calls, being in person always reveals much more. It was immediately apparent that her weight was out of control. Doctors (and she) attributed her weight gain to a well-documented side effect of the drug Prednisone. She had been taking an increasing amount of the medication due to an earlier diagnosis of Polymyalgia Rheumatica, an inflammatory disorder that causes muscle pain and stiffness, along with many other common issues such as significant fatigue and malaise. Debilitating, for sure. Witnessing what my mom was dealing with, I insisted scheduling follow up appointments ASAP with her internist and rheumatologist with me accompanying her (and my dad), so I could begin asking tons of questions and as appropriate suggesting a deeper into the situation. The appointments were subsequently scheduled for late March/early April, and…

…the advocating part of my journey had officially begun!

I felt terrible leaving, but had to return to California the day after her birthday. I was participating in a startup pitch event for the company I co-founded and was leading at the time, Stock4Good. During those two weeks I was out west, she continued to struggle with pain, fatigue, and some shortness of breath. I returned on March 20 at the start of the doctor appointments. Over the course of the next six weeks, there were many that included lots of lab work. The results kept showing that her inflammation markers were way out of standard range and Polymyalgia Rheumatica continued to be the diagnosis. Then the month of May had something else in store, which was the first of many incredibly frightening experiences for and with my mom.

During the first three weeks of May, additional follow up blood work was revealing some very…no, make that, extremely…concerning results. My mom’s kidney function, lung function and hemoglobin began a free-fall. This prompted urgent follow up visits with her internist and rheumatologist, along with new doctors such as a hematologist, nephrologist, and pulmonologist. No one could figure out what was really going on with the facts showing:

• Lung function: progressively needed more oxygen assistance, to the point where it became 24/7
• Kidney function: creatinine  level was increasing and ended up over 2.5 mg/dL
• Severe anemia: hemoglobin dropping precipitously from 12.8 gm/dL to below 6.0 gm/dL! (Normal range is approximately 12.0 to 15.5)

Just before Memorial Day Weekend, it was apparent that I would be here in Florida for quite a while – though I had NO idea how things would play out. Since it was a holiday weekend, I quickly jumped on a plane back to California to pick up clothes and personal belongings that would be needed over the course of an extended stay – not knowing how long that might be. I returned on Memorial Day (May 28) to see my mom in even more distress. First thing the next morning we were given orders from one of her doctors for a transfusion immediately. My mom could barely, and I mean barely, move at this point. We arrived at a local community hospital, where the registration person said, “today will be the type and screen, and you’ll come back on Thursday for the transfusion.” My response: “I understand that’s protocol, but there must be another way. As you can see, my mom can barely move and waiting two days will likely have her hemoglobin at an even more dangerous level. How can we get her the transfusion today?!” She said the only way was to go through the ER. So, down the hall we went!

The healthcare staff proceeded to do intake, including the type and screen related to the blood transfusion. My mom ended up being admitted overnight to receive the two units of blood and have more testing, the latter of which continued to show significant issues with kidney function, and more. Over the course of the next two days, there was only one hospitalist physician a day that came to the room and each day the same nephrologist…and no course of action was being implemented. My mom was getting worse, and I asked for a transfer to Cleveland Clinic Florida. They said we needed an admitting physician there for this type of transfer and that insurance wouldn’t cover the 50-mile ambulance ride. Regarding the admitting physician, fortunately my mom’s cousin (a retired NIH physician) connected us to a contact at Cleveland Clinic Ohio who connected us with a hematologist at Cleveland Clinic Florida who became the admitting physician – and was one of the kindest, smartest, most compassionate doctors we’ve ever encountered. As for the ambulance ride, it was a cost we were willing to absorb considering my mom might not making it much longer if she stayed at the community hospital. Late in the evening of June 1, 2018, my mom arrived by ambulance at Cleveland Clinic in Weston, Florida, and from that point on there was a sense she was at the right place to save her life — which they did!

My mom’s journey as patient and mine as caregiver/patient advocate had only just begun!

Advocacy Takeaways

• Navigating the healthcare system can be quite challenging. To start, it’s important patients and advocates understand the American Hospital Association’s Patient’s Bill of Rights.
• There are many wonderful healthcare professionals in the U.S. and around the world, who take the Hippocratic Oath to put patient’s needs above all else. This does not mean they are always right, focused, communicative, etc. They are after all, human. So as a patient advocate, we need to understand that. Be persistent and always ask questions.
• I’ve found that overall people like to help people in need. Tap into your connections – you never know who knows someone (who maybe knows someone) that can help in any way, big or small…it all counts!