Not travel related but…April is Sarcoidosis Awareness Month

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I was all set to hit you all with a write up about my recent trip to Iceland. Yep, I went again. I told you when I wrote about it last year that I would be back. I don’t know what to say, I just can’t seem to get enough of Reykjavik. As much as I would love to recap and reminiscence about my most recent adventure, I must devote this blog entry to something more important. While the subject matter at hand isn’t travel related, it is very near and dear to my heart. It’s a subject that receives very little recognition, until it claims the life of someone very dear to us or someone with celebrity status. It has claimed the lives of notable figures like Bernie Mac (actor/comedian), Reggie White (NFL), Sean Levert (singer), and Michael Clark Duncan (actor). And on November 10th, 2016, sarcoidosis claimed the life of my mother, Belinda Arnett.  April is National Sarcoidosis Awareness Month. So let’s talk about it.

What is Sarcoidosis

My first introduction to sarcoidosis began sometime in 1993. My family and I had just relocated from Chicago to Kansas City. Prior to our move, aside from an occasional cold or a flu bug, my mom had always been generally healthy. She was in her late 30’s and never had any significant health issues. But shortly after our move, she started to develop these random symptoms. They were symptoms you really just couldn’t put a finger on. Initially, the disease presented itself as painless skin nodules. Over time, she developed a hacking cough and shortness of breath that would come and go. Later on, she developed visual disturbances. From the internist to the dermatologist to pulmonologist and ophthalmologist, the road to diagnosis was a tedious one. She was misdiagnosed many times before she ever received appropriate treatment. One physician even concluded that the skin nodules were due to a reaction from drinking too much grapefruit juice. Looking back, I certainly wish that were the case.

When we think of autoimmune diseases, we tend to immediately think of lupus. Auto-immune diseases are kind of low on the totem pole when it comes to knowledge and research, but lupus is the most well-known.  Sarcoidosis is an autoimmune disease that causes inflammation and affects different systems of the body. It is characterized by the formation of tiny clumps of inflammatory cells (also called granulomas), in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. If left untreated, chronic inflammation can lead to “fibrosis”, which is permanent thickening or scarring of organ tissue. Sarcoidosis can affect almost any organ in the body, including the heart, skin, liver, kidneys, brain, sinuses, eyes, muscles, bones, and other areas. Sarcoidosis most commonly targets the lungs and the lymph nodes, which are an important part of the immune system. When it affects the lungs, it is called pulmonary sarcoidosis.  As in my mother’s case, ninety percent or more of people diagnosed with the disease have lung involvement.

So what causes it? Well no one knows exactly what causes sarcoidosis, which is why diagnosis and management is so difficult. There is still so much unknown about this disease and there is no objective test which can easily diagnose it. Numerous exams and tests are required to confirm a diagnosis. However, experts theorize that one or more exposures in people who have a specific genetic makeup can cause cells in the body to react and start to recruit inflammatory cells to involved organs, basically an immune response. Some research also suggests that bacteria, viruses, or chemicals might trigger the disease. There are theories that the immune response may be overactive or in some cases inappropriate, and that this results in ongoing inflammation, the formation of granulomas, and in some cases, for scarring or fibrosis to occur.

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Credit: American College of Chest Physicians

 

What are the risk factors?

Sarcoidosis was once thought to be rare, but it is now known to be common and affects people worldwide.  The disease can affect people of any age, race and gender.  However, it is most common among adults between the ages of 20 and 40 and in certain ethnic groups. My mother was diagnosed at the age of 38. In regards to race and ethnicity, in the United States, sarcoidosis is most common in African Americans and people of European “particularly Scandinavian” descent. The disease is slightly more common in women than in men and manifests differently in different groups of people. While the lungs and lymph nodes are affected in almost everyone who has sarcoidosis, African Americans and people of Japanese descent are more likely to have eye involvement than Caucasians. On the other hand, skin lumps are most likely to affect people of Northern European descent, and those with a Japanese background seem prone to sarcoidosis-related heart problems. Research also shows that risk appears to be elevated to some extent if someone in his or her close family has sarcoidosis, although researchers have not yet found a gene or genes linked to the development of sarcoidosis.

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Credit: American College of Chest Physicians

 

Belinda’s course

Over the years, my mother learned to manage the disease and would go through bouts of remissions and relapses. Treatment initially began with steroids and other medications to suppress the immune response. Most times, the medications would work. And sometimes, the disease would go into remission on its own giving her months to years of relief. But during the last few years of her life, after each remission, the disease would return back worse than before. Because of its mystery, the course of sarcoidosis is unpredictable. My mom’s last battle came out of nowhere and we never expected it would be her last. In fact, we were under the impression that she was getting better. But that was further from the truth.

About two weeks before my mother’s death, she complained of a sudden severe headache. Then she experienced generalized weakness and loss of appetite. These were vague symptoms that even the healthiest of people can experience. We usually chalk it up to a flu bug or “maybe I ate something bad.” With no improvement in her symptoms, we made the decision (against her wishes) to take her to the emergency room.  My mother was stubborn and hated hospitals. After being examined, having lab work drawn, and a chest x-ray, the doctors discovered she had abnormally elevated calcium levels, a condition referred to as hypercalcium. Because this condition requires IV therapy and monitoring to resolve, she was going to be admitted for a couple of days. No biggie right? She’ll be home back in time to watch her favorite TV reality shows right? Wrong. While waiting in the ER for a bed assignment, my mother began to complain of the same severe headache she experienced a couple of days prior. Except this time, the headache returned with greater intensity. The nurse promptly came in to assess her and found her blood pressure to be in 200/120 range (yikes, NOT good). As I tried to comfort my mother, she whispered to me, “make it stop” as she touched her head. I said, “it’s going to be alright” and tried to comfort her. But it wasn’t alright. Seconds later, she went into a seizure. I promptly pressed the code button on the wall and yelled for the ER staff. The seizure never resolved so she was intubated (put on a breathing machine) and transferred to the Neuro Intensive Care Unit for further evaluation.

The first week of her course seemed promising. She was followed by an extensive team of doctors and kept in a medically induced coma. Initially we didn’t know what we were dealing with. Was this related to the sarcoidosis? Was this a new issue? After ruling out infectious diseases like meningitis, it was speculated that my mother had an reversible neurological syndrome that causes seizures in response to elevated blood calcium levels. The treatment plan involved keeping her sedated for a couple of days to give her brain a chance to “quiet down” while they corrected it. She would go on to receive a couple of rounds of dialysis. It didn’t work. The calcium levels remained elevated. After further evaluation by the endocrinology team, it was theorized that the sarcoidosis was more than likely the culprit. She was started on high doses of steroids to suppress her immune response, the process that was causing the elevated calcium levels. But, by the time that intervention came into place, my mother developed an entire new set of problems. While her calcium levels improved, she would go on to develop pneumonia, a blood infection (sepsis), and went into complete multi-organ failure. Each organ system shut down one by one. Even after stopping the meds that were used to induce the coma, she never regained consciousness. She had minimal brain activity. Because of her very poor prognosis and quality of life, we were forced to make the difficult decision to end any extreme life saving measures and allow her to pass peacefully. Mom didn’t come home this time. Sarcoidosis finally won.

What the hell happened?

Looking back, I’m not sure what we could’ve done differently. My mother kept up with her doctor’s visits and treatment regimen as instructed. Sure, my mom was stubborn and sometimes frustrated, but she was never negligent. For myself, I often question if getting her to the hospital day sooner would’ve made a difference. I question if I should’ve been more involved in the treatment plan she had with her physician. Yes, I blame myself sometimes. But I guess its human nature to question if we could’ve prevented a loved one’s death. And, I carry the blame burden the heaviest because I’m a nurse.  I have a health care background; I should’ve been able to see this coming. But the reality is, we don’t know and will probably never know.  Sarcoidosis is a sneaky disease. We thought she was getting better and meanwhile, it was quietly destroying her organs, so much so that they couldn’t fight or bounce back once compromised.

How can you help?

Most you reading this will probably never be directly impacted by this sarcoidosis. But if you have this disease, the best advice I can give as a person who has been affected (and also a health care provider myself) is to be very proactive in your care and treatment plan.  Be very vocal and persistent with your physician(s) if it feels like your symptoms are not being managed well or dismissed all together.  If your needs are not being met, change you provider if possible. Everyone’s situation and circumstance are different, so I know this isn’t always easy or possible. And talk to your family. Keep them in the loop regarding your symptoms and treatment plan. If you have a loved one with sarcoidosis, try to educate yourself as much as possible (see resources below).  Be sensitive to your loved ones needs and symptoms. Auto-immune diseases present very differently than other common diseases. A person can feel completely miserable, even when they “look” very well.  And on the other hand, some people can look and present very well, but there are NOT well at all.

 

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Credit: American College of Chest Physicians

 

Resources

  • Foundation for Sarcoidosis Research: Based in Chicago and provides basic information about sarcoidosis, research information, patient information, patient support, and other resources.
  • National Sarcoidosis Resource Center: Based in New Jersey and provides links to other sites, videos and books for purchase, and microscopic images of sarcoidosis.
  • Sarcoidosis Network Foundation: Based in California and provides general information on sarcoidosis and related events and meetings.
  • Sarcoidosis Networking Association: Based in Oregon. Provides basic information on sarcoidosis, links to support groups and other sites, upcoming sarcoidosis meetings and events, and a newsletter.
  • FSR Physician Directory: A directory to help patients identify a specialist best equipped to develop and manage sarcoidosis.
  • Sarcoidosis | CHEST Foundation: Organization raise sarcoidosis awareness through clinical research, community service, and patient education.
  • The Bernie Mac Foundation: A nonprofit organization established by the late comedian and actor, Bernie Mac, to raise awareness and raise funds for sarcoidosis research.

Hopefully my personal story can help someone and raise awareness to bring this disease to the forefront. I implore you to also share your stories and experiences. Until we find a cure, be well.

My beautiful mother, Belinda Arnett (August 13th 1955 – November 10th, 2016). Until we meet again…rest well. #findacure

@urbantravelista

 

 

 

The spirit of gratitude: Lessons learned during my mother’s death journey

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Life is funny. Actually, sometimes it’s down right cruel. Today, I was supposed to be going a family road trip for the Thanksgiving holiday, just like we did last year. We would crack jokes the entire way, stop at Boomland to buy useless knick knacks, and hit the casino as soon as we arrived in Tunica, MS.  And the following weekend, I would be preparing for my last trip of the year, a solo vacay to Montreal I had been planning since September.   But none of that would ever happen.  Why? Because tonight, I’m preparing for my mother’s memorial service next weekend.  A memorial service.  I had to say it again, because I’m still in disbelief.  I know she’s gone, but I don’t want to believe she’s gone.  I had hoped that both my mom and I would grow old and gray together. I think most would agree that we all want to believe that our parents will live well past the age of 99 and pass peacefully in their sleep. We don’t expect to lose them so suddenly, especially when life is going pretty well. This isn’t exactly how I intended on ending 2016.  But, I guess life isn’t the last 2 minutes of The Titanic.

Life can really change on dime.  Nothing would prove this theory greater than the events of October 26th, 2016.  I never fathomed a simple ER visit would lead me here: looking for poems to include in my mom’s obituary, yet here I am. Vague flu-like symptoms would turn into a severe headache.  A severe headache would turn into a full blown seizure.  My mother’s last audible words to me would be, “make it stop”. I would rub her head and tell her everything would be okay.  And every day, over the course of 15 days, I would be reminded that everything would NEVER be okay. She would never speak again.  She would never laugh again. She would never squeeze my hand again. She would never gain consciousness again. My worst fears would be realized and my emotional rollercoaster would begin.

Fifteen years of nursing experience would never prepare me for the nightmare in front of me.  As a health care professional, it’s a difficult place to be when the roles reverse.  I mean, I speak their language. I’ve seen this movie before in my professional practice and I know how this story ends. I know pathophysiology. I read the expressions of concern and hopelessness in my mom’s prognosis when the residents and attending make their morning rounds.   I comprehend abnormal lab values. I understand abnormal diagnostic reports.  I know when I walk into my mom’s room and observe she requires three powerful vasopressors to sustain a blood pressure, that it’s NOT a good sign. I know that abnormal ABGs and a low oxygen saturation levels means that my mother is going into respiratory failure. She can’t breathe on her own. She can’t provide oxygen to her most vital organs.  She can’t talk to me. She can’t fight off whatever infection is ravaging her body.  And the worst part about it is that I know ALL of this and there isn’t a damn thing I can do about it. I’m completely powerless. I don’t sleep at night, because I know a phone call in the middle of the night means the worst.  I sleep with my lights on holding my phone.  I don’t drink alcohol at night or go to social events, in anticipation of having to rush to the hospital at any given moment.  I exchange the same looks of worry and despair with other families when I visit every day. My heart drops in the pit of my stomach when the ICU attending wants to call a family meeting to discuss palliative care and hospice options.  Nursing school prepares you how to meet the needs for other families during a time of crisis, but it never prepares you how to keep it together when it’s your own loved one. This isn’t my patient or a case study. This is my mother. It’s a devastating place to be…a hell I wouldn’t wish on anyone.

So, what could I do?  What do you do when your the woman that gave you life is dying and there is nothing you can do it about it?  What do you do when you pray, but the answer is no?  The only remedy I could provide was to ensure my mom was comfortable as possible. I could accept her fate and make decisions the way she would want me to on her behalf. We didn’t have much time left.  So, I could make those last moments count.  I could spend as much time with her as possible.  I could talk to her and speak from my heart even though she couldn’t hear me. I could massage her feet even though she had no idea I was there.  I could thank her for being an amazing parent to me and my brother, wife to my father, and grandparent to my nephew. I could thank her for the many life lessons and wisdom she has passed down to me.  I could tell her that if she was tired, it was okay to go, even though it hurt like hell for me to let her go. I could reassure her that we would all be okay and I would carry the baton if she wanted to pass it to me. And on November 10th, 2016 at 11:10 pm, my beautiful mother did just that.  Her last vital organ shut down and she took her last breath.

It’s only been two weeks since she’s been gone and it still hurts as if it were that fateful day. But I still find gratitude in having my mother, a pretty AWESOME mother might I add, for my 43 years of life.  Many people don’t have that.  I’m grateful that we had a great relationship at the time of her passing. She was there for every important milestone in my life that mattered: my graduations, my nursing pinning ceremony, my sorority induction, and my wedding. Some people can’t say the same about their mother and daughter relationship.  I find gratitude in being there with her every step of her death journey, from the time she lost consciousness until she took her last breath. I advocated for her and carried out her wishes the way she would want, at least I hope I did. I find comfort in learning how many people loved my mother as much as I did, and hearing how amazing she was from the perspective from other people. I find solace in those that have reached out to me during my bereavement and encouraged me to remain strong and live the life my mom would have wanted me to live, even though at times I feel like dying. I find gratitude in my parents’ example of undying love. My father, husband of 43 years never left my mother’s side.  He never gave up on her, even when the doctors had given up…even when I had given up.  I am a product of their love and I am grateful. In the midst of my gratitude, I would be a liar if I said I didn’t feel angry, hurt, or cheated.  I feel all of these things… to my core.  We had so many plans that will never materialize. But gratitude was the greatest lesson in this journey. I would be doing my mother’s memory a disservice if I didn’t focus on the gift she passed down to me: GRATITUDE.

 

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Thanks for everything Mom, Rest in Power ❤

@urbantravelista