ENTRY #27 - CODE BLUE

Back during the Fall of 2001, I had not even heard of Addison's Disease. I wouldn't have known what it meant. But, after being extremely ill for months, I had deteriorated to the point of regularly being admitted to the hospital where I would be seen as a typical Texas patient with "dehydration." After receiving IV fluids, I would indeed feel much better. But, I soon learned that after my discharge from the hospital, I'd quickly become extremely ill again. Round and round we'd go.

Meanwhile, I was becoming incredibly, increasingly weak, to the point of not being able to sit up to even take a few bites of food. My body was no longer cooperating. And I constantly had a V8 by my bedside which seemed to slightly help, for a while.

During another go-round, I had been direct-admitted into St. Luke's Hospital in Houston's Medical Center with extreme weakness, "dehydration," and other generalizations in my chart. After several days of testing, my family -- husband, sister, mother, father - we all waited in my hospital room for the Dr's final report. He walked in without answers, so it seemed logical for him to say the next best thing; he concluded that I was a workaholic woman with a high-stress life. No duh dimwit. Problem was...that WASN'T the problem!! My motto had always been, "I work best under-pressure." Stressful situations did not necessarily stress me out. A business situation that had others sweating bullets found me calm and able to make quick decisions. But, at 33 years of age, something in my body was malfunctioning terribly, I could FEEL it and was now getting flat-out angry that all of my "brilliant" doctors could not find an answer. My physical weakness had become serious. I needed assistance to walk to and from the bathroom; my family was outraged because they knew better. But, I was discharged.

Approximately one week later, I was lying in bed, as usual since I could not walk, sit and could barely talk and my husband walked over to my side of the bed. I remember trying to focus on him standing over me, but my eyelids would not stay open. I was not sleepy; this was a blanket of strange unwanted sedation that affected my body from head to toe. He sat next to me and tried to talk with me. He even shook me, tried to rouse me. I could not talk. I began having trouble breathing. He is a first-responder and he had been forced to watch me go downhill because all of the top-notch doctors and hospitals could not find an answer. His frustration was immense. He clearly understood the value of vital-statistics and he had also grown tired of the doctor's excuses for my hay-wire vitals. His fingers kept searching for a pulse, it was too weak for him to feel. I was slipping off into some fuzzy land where I could hear everyone around me, but I could no longer respond. When I did try to say something, it came out mumbled and garbled to those around me, but I thought it was clear. Unknown to us at the time, this was an Addisonian Crisis. I was to the point nearly dying.

My husband dials 911; they show up and the highest blood pressure reading they can get is 60 over 40. My husband refuses to let the paramedics take me back downtown, so I head to an acute-care hospital in the Clear Lake area with him following the ambulance at high speeds. I do not have any memory of their multiple attempts to insert an IV, but my vessels had such low pressure that they were collapsing. Overall, I believe I had around thirteen IV sites for this particular admission, if that gives any indication to the condition of my vessels. I vaguely remember the pediatric-team coming in and discussing trying the vessels in the back of my knees, then I was out again. They were also taking my blood pressure in my legs because it often wouldn't even register when they tried to take it on my arms. Back on IV fluids, it took more time to come around. Basically, I had been slipping into a comatose state, typical for an Addisonian Crisis that is untreated.

In this hospital, FINALLY, I have a doctor who actually incorporates today's high-tech diagnostic methods with plain, old-fashioned good doctoring. He regularly came to personally check on my vitals. He could see that there was a serious issue. He first administered a Table Tilt test which was extremely conclusive, very remarkable. In this test, you are strapped onto a table and all kinds of connections to your body are made to read vitals during the test. You begin by lying down, they take a reading. Then, they put you at an angle, but not completely upright and they take more vital readings. Then, they mechanically adjust the table until you are in a standing position and again take vitals. Put it this way, once they got me in a standing position, my vitals became so serious that I could have coded at that moment. They could not even chance a repeat reading. My blood pressure dramatically dipped to the point of not being able to sustain my body while my pulse sky-rocketed because the heart was confused and furiously trying to pump blood...not a pleasant scenario. As this is happening, my brain was not getting enough oxygenated blood, among other things happening, and I'd go unconscious. This test was done late in the afternoon and gave some suggestion to the problem, but the doctors thought it could be arterial in nature. They would soon have another clue.

That night, in the hospital, around midnight, I was still on the cardiac floor hooked to the telemetry monitors and I full-out coded. I must say, this sensation was not unsual, therefore, I must have had the same thing happen multiple times at home when I woke gasping for air. God only knows how I survived this long. Needless to say, I was drifting in and out of this world during the code. In one sweet code-blue moment, I was talking on the phone to my brother. Now that I think about it, I can giggle at the thought of a hospital team working on me while I am coding, yet I am having a pleasant phone conversation with my brother, at midnight. I'm sure I don't have to tell all of you - that didn't actually happen - only in my Code-Blue moment of lift-off did that happen.

Very early the next morning, the cardiologist stood at the foot of my bed and was in deep thought. Little did I know, he'd been with me all through the night - there for the Code Blue. He stood there and rubbed his chin while thinking; we didn't talk. He suddenly jolted out of his thought process and starting issuing rushed orders to the nurse. They took an A.M. Cortisol test and later conducted the ACTH-stimulation test and THERE WAS THE ANSWER! Addison's Disease. The puzzle pieces fit.

A few pills later and perhaps IV steroids, I had been too sick to really know all that I was being given, I just remember the new pills...I was finally able to stand firm on my feet, but had not walked a significant distance in such a long time that my muscles were weak. But, the medicine had been like a light switch for my body. Just when I had started to lose hope, things turned around. The hospital ordered physical therapy treatments. The PT therapist came in and put a special belt around me that had a loop in the back for the PT therapist to hold onto, he put a walker in front of me to hold onto and we went for a stroll. I was still weak, but with his strong steady hand helping to hold me into place, I was able to really WALK again! Out into the hall we went, then once around the nurses' station and he wanted me to go back to my room - I didn't want to go back. I said, "One more time!" through tears and we again went around the nurses station while they all clapped. I had gotten close to the nurses and they all knew about my code, some had helped save my life, so this was quite a moment. To me, it was a beautiful moment shared with beautiful people. This medical team was incredible - I had my life back. The therapist even indulged me with a third time around before insisting, without compromising further, that we go back to my room. After all, it had only been about 24 hours since I had coded. But, life was looking brighter again.

And my perspective about this world was indeed forever changed after that Code Blue night.



My view yesterday, Oct. 22, 2010, while visiting a local hospital for newspaper article research.
A nearby Air Base prepares for the weekend air-show. I am blessed because that
Fighter Jet symbolized how I felt after my diagnosis!!



ENTRY # 26 - BARBARA'S STORY- A Son's Diagnosis

With permission granted, below you'll find a pasted section of an email that I received from a mother who has a son with adrenal insufficiency. The diagnosis for their son was rough going. They still have struggles, especially because a child often does not fully comprehend their own symptoms; kids usually do have difficulty sorting through and explaining their physical troubles. Often, these families are not given adequate urgent-intervention training and education that could help with future Addison's complications...such as a cold, broken foot, etc., Unfortunately, the seriousness of this disease is not conveyed or completely understood until it hits home with shocking consequences. As I always say, this disease is so rare that the details are difficult to absorb, especially upon initial diagnosis ---- we just don't hear enough about Addison's disease to be sufficiently comfortable with its sneaky aspects.

Support groups and websites are wonderful, but they are not a substitute for good medical care and intervention. Let's face it...after getting a diagnosis, you need a serious care plan with a medical professional who can effectively inform the patient and their family about their new condition and give life-saving data. Too often, this information is brushed over by medical personnel with a detached attitude associated with processing paperwork.

Ideally, it would be awesome to have a medical team, upon diagnosis, provide an initial consultation with the packet of patient information from the National Adrenal Diseases Foundation (NADF) or something similar. Personally, I had received valuable information upon my diagnosis ten years ago by an awesome Addison's group in the U.K. Of course, those were different times with much less readily accessible information. Still, it is sad to see that compelling intervention upon initial diagnosis is still, mostly, inadequate. For parents of a child with adrenal insufficiency, this can be a nightmare. As an Addison's patient, I can appreciate how daunting it must be to look at your sick child and try to assess their adrenal insufficiency needs. There is not a solid "at-home" test to confirm an Addison's crisis is underway. A variety of generalized symptoms can cloud the situation. The onset of a crisis can be slow or sudden. There might be multiple symptoms or barely a noticeable hint that trouble is approaching. Then, parents are also concerned about over-medicating which can indeed cause an entirely different set of problems. Certainly, the day-to-day management of this disease by many parents is not a cinch. The balancing act, based upon each child's individual needs and changing situations can be a puzzle. To these parents, I tip my hat to you and hope you realize that you are a daily hero.

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BARBARA'S EMAIL

Lana, this is an email I have from a year or so ago. I am at work so I thought I'd just shoot this off to you so you can get a general idea of how Zac was diagnosed. He is 11 now, does - about 1 day hospital stay a year.

This is how it all came about for us.

History: 2007
Zac has been complaining of stomachaches over the past few months off and on, initially we took him to our pediatrician and visibly he couldn't see anything wrong with him, maybe he's got a virus, maybe it's constipation, nerves, etc. We gave him some milk of magnesia and the stomachache went away. About two weeks later, he complains again and this time, he's doubled over in pain, he's lightheaded and is having trouble walking. We call our pediatrician and ask that he do blood work and take x-rays, our instincts say something is not right.

Zac on a family vacation during Summer 2007.
Within months, by December 2007, he was diagnosed with Addison's disease.

The x-rays show that he is constipated and his blood work comes back with some questions, his thyroid levels are off, his blood sugar is low, his sodium is low and 3 of the 5 pointers for Celiac are positive. We give him some more milk of magnesia and his stomachache goes away. The pediatrician asks us to redo the blood work in a week; the thyroid results are still abnormal so he refers us to an endocrinologist at Mass General in Boston. His blood sugar and sodium levels seem to have normalized, however, the celiac results are still the same.

We saw the endocrinologist on November 30th and she diagnosed Zac with hypothyroidism. Zac will take levothyroxine on a daily basis for the rest of his life. She also mentions the celiac results and tells us we should make an appointment with a Gastroenterologist and they can do a scope to get a definitive answer. Celiac is a wheat intolerance, and is controlled by diet. We have an appointment scheduled for January 22, 2008.

(Before they can get Zac to the appointment with the Gastroenterologist, they have

a terrible, close-call experience...)

On Thursday, December 13th Zac comes home from school complaining of his stomach again so we start him with the milk of magnesia on Friday after school and it really knocks him out, he's very lethargic, tired, starting to get a cold so he's got a dry cough and spends most of the weekend in bed and the bathroom.

Sunday night a little after midnight I awoke to him whimpering, I went over to check on him and he is flat on his back, stiff with his eyes wide open. He is non responsive to my voice and talking to him, I yell to Chuck (my husband) who in turn comes over and I run for the phone to call 911. His breathing was very shallow and actually stopped breathing a few times, so Chuck gave him a few breaths.

The ambulance, Emt's show up very quickly and can't get him to respond either. They try and take his blood sugar and get no reading at all, so they gave him something and he responds. The ambulance takes us to Lawrence General Hospital in Lawrence to stabilize him and then we were transferred to Mass General. They took all sorts of blood, x-rays, etc and had diagnosed Zac with Addison's disease within hours. Zac spent 4 days in ICU and went home on the 5th day.

Zac will take 2 different steroids 3 times a day to replace the steroids that his body doesn't produce.

Zac - Immediately after his hospitalization & diagnosis of Addison's.

Zac had a cold Feb 08 which landed him in the hospital overnight because he had strep and needed fluids through an iv, all started as a normal cold. I didn't increase his meds cuz was told not to unless he had a fever. Then the day he had a fever I called and they told me to give him his meds through the injection, solucortef, which I did and he did still ended up in the hospital the next day.

Then last week starts with a sore throat, had him tested for strep which was negative, didn't increase his meds cuz rules say, fever and vomiting is reason for increased dosage, Saturday he was complaining of bad stomach pain and now had a fever so we took him to the ER, they gave him his meds through an IV and he was better within hours, at that point they told us to double his meds for the duration of the cold.

It is absolutely a gut feeling and we are learning that. I belong to a group for Addison's on the Internet, but it's primarily woman, one woman has a son (11 years old) who has it but he's not being treated with hydrocortisone so her experiences are a little different. But I have learned a ton from them. Zac has started to complain of stomachaches periodically again, so we wonder if he's not being medicated properly. We had him at the Dr yesterday and they want us to do bloodwork in a week, and they will recalculate his dose but her gut feeling is that something else might be going on, specifically celiac. He did have the endoscope in January but the biopsy didn't show he had it, but the bloodwork did, so the GI was thinking he might be in the early stages. So we are just waiting to do that at this point. Zac can communicate with us so that is helpful, but he's also 9 years old so sometimes hunger pains get confused with other stomach pain.

Since this time he has had tests for all stomach issues and ruled everything out so we have come to the conclusion it's stress (Addison's) for him.


Zac - 1st day of school in 2010 - 6th grade!!



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If you have a story, please email it to FindingLana@yahoo.com with your written permission to post and I will put it on this site with a dedicated title. You may also email a couple of pictures to post along with your story. Follow ups and updates are also welcomed; just email with persmission for me to post. Your story and updates will also be open to all comments so you CAN communicate with others about your own story by making ongoing comments.

Keep focused, be encouraged, and remember that you do make a difference!

Sincerely, Lana C.



ENTRY #25 - Addison's & Interesting Bonus

Here in Texas, currently, the Ragweed pollen and Elm tree allergens are floating disasters for anyone suffering with allergies. Having major allergy attacks can cause stress to a person with Addison's disease. The constant battle that the body wages during allergy attacks can be draining to a person without Addison's. Frequent sneezing; swollen, itchy eyes; and trouble breathing can add trouble for those with adrenal insufficiency.

Then, there is the good side of having Addison's disease because the steroid treatment can sometimes help the swelling and other negatives that come with an allergy attack.

Personally, I had something very interesting happen to me when I was diagnosed with Addison's about ten years ago. Before that time, I had suffered with asthma for most of my life. I'd had some pretty severe attacks and used my prescribed fast-acting inhaler along with long-term medications to reduce swelling on a daily basis. But, along with the devastation caused by a very delayed diagnosis, I had a pretty cool, yet predictable happening after my treatment for Addison's began...my asthma attacks disappeared. The steroid treatment needed for Addison's helped my asthma symptoms to virtually disappear. I could breathe easy.

Often, I have wondered about other people with adrenal insufficiency and their experience with asthma or other conditions that were made better by treatment for their adrenal issue. So many other conditions are treated with steroids, so it may be more prevalent than I realize. Regardless, I have been so thankful for the long reprieve from asthma, thanks to my Addison's. Yes, life can be strange.

Entry #24 - Champion Moms & Addison's

Moms are not perfect, but they usually WANT everything to be perfect, and that's what counts. Lately, I've been looking around, reading about and observing all kinds of moms. First of all, my own mom was spectacular. In spite of being disabled because of Polio, my mother was my champion.

As my body began to melt away because of a serious adrenal failure, my mom was there. Upon diagnosis, my body had become so ill that my organs were compromised, and a long, hard battle with Addison's was waged with my mother constantly by my side. As I lay in a hospital bed for days on end, my determined mother would sleep on an uncomfortable plastic couch/bed by my side. Her aching body rarely found rest. She never listened to my protests, and I am glad. Having my mom with me through some very scary times of being seriously ill was a comfort. You know what kind of mom I'm talking about. Maybe you are one of those never say die mothers. Maybe you have one in your corner. Perhaps you had been blessed, in the past, to have such a champion named, "Mom."

During multiple hospital stays, I wanted my mom to go home to her own bed. I was very weak, but I tried to assure her that I was in good hands. But, she'd ignore me while she put her wheelchair in the corner of my hospital room, then she'd plug it in to charge for the night. After getting extra blankets and settling into the recliner or the makeshift sofa that converted to a panel bed...she would finally start unbuckling, unstrapping and untying her brace so she could lie down for a few hours. From the metal built into her shoe to top of her thigh, she was enclosed in a brace. With one arm, she'd do more than most mothers could do with two able arms. Her left arm had been paralyzed during her childhood after she caught the Polio virus. Her right leg and left arm would both remain paralyzed from five years of age until she died. She struggled to swallow without choking because part of her throat mechanisms were paralyzed and, as a a child, she had spent one long year in an iron lung. Still, she had three kids, earned upper level degrees, worked as a teacher and took art classes on the side. She never stopped.

My mother kept going in spite of her hurdles. Above all, she mothered us and ignored her own pain. My sister, brother and I would watch our mother struggle to do simple things - everything one-handed. Yet, she never complained. When we were young, she got dressed, then she dressed us three kids with one hand; she made school lunches, delicious dinners and always chopped onions, made hamburgers and home-made french fries with one hand. The remarkable feats never ceased to amaze any of us.

During my early years with Addison's, my mother was my voice when I could not speak; she refused to accept mediocrity when it was all that was offered. She actively worked to make sure my children had as little emotional turmoil as possible during my hospitalizations. Forgoing her own comfort, my mother would leave her own home so she could stay in my house during my hospitalizations because she wanted the kids to not have their normal schedule interrupted; she wanted them to be in their own rooms; she wanted them to have as few changes as possible on top of their mom being in the hospital. Few people offer this kind of sacrificial love. This woman was a nurturer by nature. My amazement for her didn't stop there. My mom, with her Master's Degree, was a well-read, thought-provoking, challenging woman to have in your presence. Life with my mother was never boring. When we found out about the Addison's disease diagnosis, my mother went into academic research mode. It was impressive.

After my diagnosis, my mother began to get weaker. Something had changed. Then, she found two lumps in her left breast. The biopsy took place and the morning that the call came in, we were in the house together. I knew the call was to give the results of the biopsy. In the next room, I bowed my head as she took the call. A heavy sense of knowing came over me. As she said, "Hello," I already knew it would be cancer. Quietly, she hung up, and I went to her. She was in her wheelchair. I put my hand on her shoulder and we both mourned the news.

Invasive carcinoma. Her already battle-worn body would not be able to withstand the radiation, surgery, and five chemotherapies. In just over 2 1/2 years from the day of diagnosis, she was gone.

So, I look around at all of these mothers and am fascinated by their bond. I once felt the infinite love of a mother. Now, I provide that infinite love to my daughters. Mothers and daughters can get into a heated conversation and in the next moment, they are laughing and talking about their hair. Some mothers and daughters simply share special look between each other. Then, there are daughters, like me, who look in the mirror and seem to be suddenly facing their own mother in their reflection, but the real thing will never stand before them again. But, I feel as if my own mother's presence had been so powerful that it will last me a lifetime. Addison's tried to take me down. My health was seriously compromised by Addison's, yet my mother never gave up. She educated many doctors, and her strength became my healing ground. Her voice and her determination were so solid that I will always have it within me.

I dedicate this moment to all of those powerful women who take motherhood as a commitment beyond any ordinary vow, beyond any contract or promise. I honor the connection a mom has to her child because it is uncanny. If your motherhood experience gives emotional muscle, then celebrate and cherish each moment.

If you have Addison's disease, Who is YOUR main CHAMPION? How have they helped you?