Near death experience was a call to life- Jen’s story with adrenal insufficiency

February 23, 2017 will be a date that will forever be engraved into my life and the lives of the people closest to me. It’s the night that I died…three times…and came back to life to tell my story.

It was a cold, February night. I had been under a tremendous amount of stress. My ten year old had suffered a major concussion at school a couple of weeks prior. That led to several doctor’s appointments, a CT scan, a trip to the children’s hospital when his symptoms got worse, communicating with his teacher to get homework that he could safely do while he was at home recuperating, and a group of unneccessary text messages between his father and me, arguing about his treatment plan and the plan for our son to return to sports. Living with Adrenal Insufficiency has taught me that when I’m under any emotional or physical stress, I need to take extra meds in order to cope like someone who has healthy, functioning adrenal glands. However, when my cortisol levels drop to a certain level, I can’t think clearly and I don’t realize when I need to take the extra life saving steroids. My husband recognized it, but it was too late.

There is a block of time that I absolutely don’t remember. That block of time started right after I told my husband “I don’t feel right…” I was standing in the kitchen and I had just read a text message that apparently dropped my cortisol levels to a dangerously low level. My husband took one look at me, and told me to come lay down and he would get me some meds. To be honest, the meds I truly needed was my Solucortef Emergency Injection. However, it was sitting at the hospital pharmacy….all because…one, I didn’t think I truly had “that” bad of a case of Addison’s…I saw other people posting in our groups and they were constantly in crisis and having to inject, but that just wasn’t me. Also, it was $52 to pick it up and we simply could not afford it at the time. Please read that again. I could not afford my life saving injection that literally could have and would have SAVED MY LIFE!!!!! I started to walk towards him, and I collapsed in the middle of our dining room, not breathing and unresponsive. My husband told my ten year old to call 911 and he immediately started CPR.

It took emergency responders 14 minutes to arrive to our house. They attempted to revive me with no avail. I was in cardiac arrest. They couldn’t locate a good IV spot, so they chose to perform an emergency procedure known as an IO (Intraoasseous Infusion) where they drill into a person’s shin bone and are able to get an IV started. The problem is, the EMT who performed the IO drill led too far into my shin, so all of the medication that they pumped into my system went straight into the tissue of my leg. Since I was not responding like I should with the medication, they kept giving me more and more, not realizing the harm it was causing. A brand new EMT looked at my leg and asked if my leg was supposed to look the way it did. I apparently had compartment syndrome and my leg had ballooned up. Things suddenly took a turn for the worse.

My husband was on his way to the hospital, when all of a sudden I went into cardiac arrest again and my “spirit” visited him in his car. According to him, I told him that I love him and I was saying goodbye. Being the strong-willed person that he is, he told me to get back into the ambulance and start breathing. Although our wedding vows did not include “thow shall obey,” I left his car and started breathing in the ambulance. When he arrived at the hospital, he was met at the door by the hospital chaplain, who urged him to call my parents, as the doctors did not expect me to live. My husband was notified that I would require emergency surgery and they needed him to sign a release for them to operate. Knowing what surgery would do to my body, he insisted that the medical team give me 100mg of Solucortef prior to the surgery. It then became a battle of who would give in first. The person trying to get him to sign the release told my husband that I would die if they couldn’t operate qickly, and he told them that I would die if I did not have the emergency steroids on board prior to the surgery. In the end, my husband won the battle and after I was given the Solucortef, I was rushed into surgery.

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5 steps to successfully getting the care you deserve!

Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be SUCCESSFUL at getting the care I deserve.

Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?

  1. You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
  2. Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
  3. Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
  4. Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
  5. Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!

-Adrenal Alternatives Contributor- Jen Hudnall

10 Things I Wish My Endocrinologist Would Have Told Me….

I was diagnosed with Adrenal Insufficiency on March 23, 2016. When I met with my first Endocrinologist, we’ll refer to her as Dr. W, I knew nothing about Adrenal Insufficiency so I took a notebook with me, prepared to take lots of notes. In a nutshell, this is what Dr. W told me…”Take Hydrocortisone twice a day, I’ll see you every 6 months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over 8 years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

If you’re anything like me, I love knowledge! As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, with people who were members that each had their own Endocrinologists and ranged from being newly diagnosed to having Adrenal Insufficiency for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized that I knew more about my illness than she did. As you can probably guess, I fired Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about Adrenal Insufficiency as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I had been at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people who’s doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile the Top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your Adrenal Insufficiency, you should consult with your doctor.

1.“Taking Hydrocortisone 2 times per day will not be enough!”Hydrocortisone stays in a body anywhere from 4-6 hours at a time. When I took my Hydrocortisone twice a day, I would feel great for about 2 hours each time I took them, but felt horrible the rest of the day. Little did I know, after the Hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so horrible and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it. In order for that to happen, a person needs to take Hydrocortisone between 4 to 6 times per day, depending on how quickly their body metabolizes the Hydrocortisone.

2. “How much and when to take Hydrocortisone matters!”In order to mimic a normal body’s output of cortisol, you have to take Hydrocortisone in a way that will be as close to how the body produces cortisol as possible. How do you do that? You have to follow the Circadian Rhythm dosing schedule. For me, since I metabolize Hydrocortisone every 4 hours, that means I need to take it 6 times a day in order to have 24 hour coverage. Is it a pain in the butt? It sure is….I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! Before I started following the Circadian Rhythm dosing schedule, I just guessed at how much I needed to take every time. I knew that normal bodies had higher amounts of cortisol in the morning and very little at bedtime, so I just took the highest amount when I woke up and tapered down during the day, and took my last dose at bedtime. This schedule not only had me feeling awful when I first woke up and having highs and lows throughout the day, but I was also over replacing my cortisol at times during the day and I had no cortisol in my body at night and early in the morning, when a normal body would have cortisol.

3. “You will have to stress dose!”Do what? Dr. W never told me that there would be times that I would need to take extra Hydrocortisone. In a normal body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with Adrenal Insufficiency. At times when we need more, our bodies metabolize the Hydrocortisone faster and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of your body. If you are having additional emotional stress, even if it’s good stress, like attending a wedding, you’ll have to take a small amount extra. If you have a stomach bug or an infection, you’ll have to double the amount that you take during the day. And if you’re puking or having surgery or get into an accident, you’ll need 100mg of Solucortef, which is the emergency Hydrocortisone. It’s very important to know what your symptoms of low coritisol are and to listen to your body.

4. “You will need to carry an Emergency Injection with you at all times!”Not only did Dr. W not tell me about Emergency Injections, when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an Emergency Injection on you at all times can be deadly! I didn’t realize just how important having one at all times was until I had an Adrenal Crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my Emergency Injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an Adrenal Crisis and wasn’t breathing, and after my husband injected me with the Emergency Injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am puking.

5. “You will gain weight!”Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the Hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and I hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the Admins of one of the support groups on Facebook wrote a post about why people gain weight on steroids. Basically, she said that carbs instantly turn into insulin, so our bodies have a huge rush of insulin every time we eat carbs, and that turns into fat. Seriously? I love carbs! Give me bread and pasta and I’m a happy girl. Well, now I’m a chubby, happy girl. After doing some research, I found that following the Ketogenic way of eating was one of the only options for losing weight while on steroids. When I follow that way of eating, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.

6.“You’ll need to take a Calcium supplement and other supplements!”I have a good friend of mine that is a doctor. After I was diagnosed, he asked me how much Calcium and Vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking Calcium and Vitamin D every day, because steroids rob your bones of Calcium and it can lead to Osteoporosis at a very young age. Also, because the Adrenal Glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day. I didn’t even know what DHEA was until recently. I was feeling sluggish and had to take naps during the day. Dr. C tested my DHEA levels and they were low. Now, I take a DHEA supplement every day and my energy level has improved tremendously.

7. “The days of going to the hospital are not over!”Not only are the days of going to the hospital not over, now that you have been diagnosed with Adrenal Insufficiency, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found that there are two types of doctors. The doctors who took an 8 hour class in med school that think they know “everything” about Adrenal Insufficiency. And the doctors who admit that they don’t know as much as I do about it and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an Adrenal Crisis, in the hospital, under their care.

8. “Be prepared for an Adrenal Crisis!”Some people with Adrenal Insufficiency can go years without having an Adrenal Crisis. Other people have several a year. Knowing the symptoms of low cortisol can be detrimental to keeping you out of an Adrenal Crisis. Knowing the signs of an Adrenal Crisis will save your life! Always make sure you have your Hydrocortisone and your Emergency Injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my Hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in an Adrenal Crisis, and ended up spending the next two weeks in the hospital because of the severity of the Crisis. Also, making sure you always wear a Medical Alert ID bracelet is essential and making sure your loved ones know what to do when you do go into a Crisis is crucial.

9.“You are not alone!”When I first got diagnosed with Adrenal Insufficiency, I felt very scared and alone. I had no idea that there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have Adrenal Insufficiency, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day like I am.

10. “This is your new normal!”Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have Adrenal Insufficiency, I will always have to take replacement steroids to live, I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are! You are an Adrenal Insufficiency Warrior!