In case you missed it, Action for Adrenal Awareness has added a new member onto our team. While Kim, Debby, Nichole and I all live with some form of Adrenal Insufficiency, Heather has joined us to represent the voice of a caregiver. Heather supports her mom, who was diagnosed with Primary Adrenal Insufficiency (Addison's Disease) in 2008.
Pink Converse in the Emergency Room
Heather's mother had been ill for a good part of Heather's life, but the real trouble began around 2000. She was in and out of emergency rooms constantly. Her mom would come to Heather, or her brother, stating that she needed to go to the ER. Her mom would always be wearing her LSU shirt and pink converse on.
Heather and her brother became so exhausted from trying to explain each ER visit that they began texting one another Pink Converse. That would set off the prayer and support chain. No need to explain. No energy to explain. No time to explain. Pink Converse.
|"Pink Converse" = Another ER Trip|
The doctors were all baffled. They only treated the symptoms:
- Low blood pressure? She got blood pressure meds.
- Stomach issues? They removed her gall bladder. She had multiple scopes. She had the balloon endoscopy surgery, not once, but twice.
- In pain? They gave her pain meds.
- Dropping weight quickly? An endocrinologist told her to eat more protein.
- Salt cravings? Eat cheeseburgers and Tex Mex.
The fatigue caused Heather's mom to miss out on many things. She started dealing with confusion and dizziness and black outs while driving. Specialist after specialist continued to just treat the symptoms:
- She became sensitive to the sun. Now, she saw a dermatologist.
- She got headaches and was given medicine for that.
- She had low Vitamin D and Potassium, and got vitamins for that.
- She could not sleep, and got medicine for that.
- She got moody, irritable and depressed and they gave her medicine for that.
- She had chest pains, and got medicine for that.
By 2007, her med list had grown along with her symptoms. But there was no improvement. Meanwhile, Heather was attempting to help her mom while simultaneously planning a wedding. On Heather's wedding day, her mom was pushing through as much as she could. She was down to 78 lbs and was unable to gain weight.
|Photo from 2007.|
A few weeks after the wedding, Heather's mom drove herself to an endocrinologist. He initially had no answers. She cupped her face in her hands and bawled. She told him she was ready to check herself into a mental hospital because no one believed her. No one could help her. She felt terrible every day. Every day was a fight, but nothing came up on the tests.
|Photo from 2007.|
The endo started going over her tests with her. He looked at her medication lists. He told her that some of her medications were probably interfering with her tests. He felt like the low cortisol, digestive issues, sensitivity to sun, fatigue, pain all pointed to Addison’s Disease. He shook his head that it had not been brought up sooner. He ordered an ACTH test immediately.
The ACTH test was a confirmation.
Heather's mom was not making cortisol.
But a diagnosis did not immediately equate to better care. One particular ER team didn’t know about Addison’s Disease and did not recognize her mother's adrenal crisis. Her mother had trouble answering questions and explaining what was wrong. Without an advocate, Heather's mom was inappropriately placed in a psych ward overnight with an IV until further evaluation. She was humiliated, defeated, weak, frustrated. She needed a fighter.
That’s when Heather joined the fight.
By 2011, Heather's mom had a new internist, neurologist, and pain management doctor on her team. People were starting to understand the disease better. Slowly, the family began to see improvements. But Heather still refers to 2010 and 2011 as the lost years.
At the end of 2013, Heather and her husband adopted two precious children. The pitter patter of tiny feet into the home brought joy and stress. Her mom was happier than she had been in years. She didn’t have the energy to help with the kids too much, but she sat with them, played with them, read to them, and cuddled them. Every now and then, she could even muster the strength to go out to lunch or on a small trip with Heather's family. The kids learned quick that Mimi was ill and they needed to take good care of her.
Then the worst crisis to date occurred.
Heather's mom just had medication added to her pain pump that Friday. She did not feel well and stayed in her room all through the weekend. By Sunday, Heather was frightened. Her mom was loopy. Confused. Unable to focus. Heather realized she had not eaten, so Heather made her a sandwich. Her mom fell asleep in the plate of food.
Heather checked her mom's blood pressure. It was lower than Heather had ever seen. Just then, Heather's brother in law stopped by. He tried to talk to Heather's mom. He shined a flashlight in her eyes. She was not responsive.
All they had to say at that ER was "BP is less than 70/40. Confusion. Adrenal Failure." They did not make her wait. They did not make them sign forms. They raced her to the back. Heather told the doctor that her mom had a small procedure on Friday and had been resting all weekend. Heather was afraid that her mom may have missed her steroids. The ER doctor screamed, "This is TEXTBOOK ADRENAL FAILURE. MOVE!!!!!!"
Her mom’s kidneys began to fail. Her temperature dropped. They had to put a heater under her. Heather held her mom's hand tight and prayed over her. Heather felt so guilty. Over the years, Heather had times where she made sure her mom took her medication. But Heather stopped because her mom wanted her independence back.
Heather had to respect her mother, and yet help her, at the same time. The job of a caregiver and yet still a daughter is a challenge. Her mom still wants to be her mom and help Heather, and always will. But sometimes, Heather has to jump in and mama her mom. That’s tough for both of them.
Her mom was in ICU for a full week and in the hospital for another week. Because that young ER doctor recognized the emergency and acted on it quickly, Heather's mom is still alive.
Her mom continues to have great days and miserable days. Heather continues to administer injections when her mom feels ill. Her family knows the ER crew here by first name, and how to talk to them. Her mom is driving again. She sometimes get outs for a walk or to shop or have lunch. She loves spending time with her grandchildren.
|Heather's mom, surrounded by her family.|
And the pink converse?
Well, they are still here.
Heather still texts her brother Pink Converse sometimes.
And he knows to start praying.
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Labels: AFAA, Awareness, Guest Writer