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The Ability to Advocate Shouldn't Determine Who Gets Good Healthcare

I’ve lived with chronic illnesses since I was a child. While they were mild, I faced some challenges in learning how to deal with the fact that my life was different.

At age 7, I started breaking out in hives — and these weren’t your ordinary hives either. They were so massive, almost the size of a large tomato. And they were all-consuming. We would spend days and hours going back and forth to doctors and emergency rooms and never found answers. My mother kept pushing and doctors were stumped. And then this mysterious cough came and replaced the hives. And for months we went back and forth to doctors and specialists and nobody could figure things out yet again. It wasn’t until my mother, who had been pushing and pushing, got my PCP to give us a referral to another specialist that we got an answer. What happened next was beyond mind blowing.

We went to see an ear, nose and throat doctor and literally within moments he was able to diagnose me. I had asthma. He knew that cough very well and gave me a referral to an amazing pulmonologist. And that doctor was just as awesome and gave us some great resources to learn to manage this condition.

I know that none of that would have happened if it wasn’t for my mother continually pushing for answers and the ability for us to see multiple doctors and specialists and have tests run.

The reality is that many people are unable to access healthcare nor effectively manage their chronic conditions.

Let us fast forward many years later when I was going through a  similar situation again. This time it started with my feminine pain and issues and me desperately seeking to be heard and diagnosed. It took me 13 years and 13 doctors to end up being diagnosed with endometriosis. I was blown off, dismissed and had so many doors shut in my face that it discouraged me and made me feel like I was “crazy,” until I finally found a doctor who believed me and was able to help.

And I wish it stopped there. But it never does. Also during this time I developed so many other symptoms and had to seek out other doctors and the same thing happened. It would take me years to find someone who understood what I was going through and receive not only a proper diagnosis, but proper treatment as well.

And once again, I wish I could stop there — but that isn’t how life works right? Right.

I’ve had to go through all of this yet again, but with my parents this time. Let’s just say it is much harder this go round. Something about having to do this while still fighting my own battles just makes this beyond exhausting. But if I don’t step in and help, then what will the outcome be? Who will be the one to assist them? I will tell you what will happen because I just went through this.

My father was to have a two-day surgery about a week ago on his back. He went in for the first part of his procedure and that went fine. He was in his room when he started to crash. His blood pressure and other vitals began to drop rapidly and the rapid response team was brought in. They got him stable and then noticed a pool of blood in his bed. They also noticed his catheter bag was empty. Over a several hour period he had not voided any urine. They removed the catheter and tried to place another one. Same situation happened. He had lost more blood and his bladder hadn’t drained. They tried to cath him again and had no results. We went through this several more times and then eventually the urologist came and they got a good cath. His urine finally drained and it was filled with blood. He had also lost quite a bit of blood at this point.

The doctor came in the next morning and told my mother and father that he could not do the second part of the surgery because he had lost too much blood. At this point, I was on my way to the hospital to see what the hell was going on. I found out his blood levels were so low and he was basically at transfusion level.

However, they wouldn’t transfuse him. He also still had quite a bit of blood in his urine and on top of that he was a bit disorientated and wasn’t eating. He also had these severe hiccups and was not getting the medications ordered for him. Because all of this was going on, I requested the patient advocate, nurse manager and the hospitalist. They didn’t send any of these people — just assistants. At this point he was not doing well. So we filed a complaint with the hospital. He was discharged with a catheter, blood in his urine, not eating and dangerously low blood levels. We know that this occurred 1. because nobody wanted to take responsibility for what had happened post operatively with the catheter which was the cause of most of his problems 2. because he was a patient of color and 3. Because nobody really wanted to address these issues.

My mother and I spent days pushing and advocating for his care and yet nothing happened. Even after his discharge we are continuing to push for things to be addressed and for the continuity of care as he should have it. However, this is more of an uphill battle than we have ever experienced. And the sad part is, the resources are there, the doctors that need to be ordering these services are simply not doing it. However, about a week out of the hospital we did see a glimmer of hope… his primary care doctor was able to finally fully review all that transpired and not only was she upset at the chain of events, she was able to order some things that would help him comfortably recover at home. Praise God for a great primary care doctor because without her I don’t think that we would have made any progress. She also has made a complaint about his care and it is documented that she has great concerns with how he was treated during his inpatient stay.

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So here is the other harsh reality: many patients do not have advocates and the way our healthcare system is set up, if you don’t have someone who can serve as your voice when you are unable to speak, then it is almost as if you are doomed. And this a shame. We live in a society that if you don’t have insurance or if you are of a certain socioeconomic status or even of a certain race, then these factors predetermine the level of care you received and that isn’t right. And if these things cannot be changed, then it is necessary to have someone pushing for you to get the best care that you can receive. And even if you have insurance or you are from a privileged background, you still have to keep pushing to get the best care because if not they will leave you to perish.

In the coming weeks, I know I will continue to stretch and strain myself to help my mother care for my father, and also ask the tough questions at his appointments. And I know his providers may not have the answers we are looking for but as an advocate, at some point, they will need to come up with the answers and that is the honest truth. And the same goes for those who work in hospital administration and with the insurance companies and any other aspect of the healthcare industry. When we know better we do better!

So what can one learn from all of this? Well, a few things:

1. Never stop pushing.

2. Make sure you have someone to be your voice when you cannot be your own.

3. Expect some roadblocks in the process.

4. Document everything, including every request you make.

5. Collect the information for the hospitalist, patient advocate and the complaint line. My biggest lesson was that in some instances, it takes more than one person to get things done, and that is OK.

What advice would you add for someone for is advocating for themselves or a loved one? Tell us in the comments below.

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