One thing no one wants, when you have Chronic Illness, is another diagnosis to add to the ever-growing list.
There are times though when a new diagnosis brings a renewed sense of hope, relief and determination to fight on.
After spending 8 days in hospital following my recent repeat spinal surgery, I returned home feeling this particular hospital stay had been well worth it.
A vast contrast to how I felt upon waking in recovery. I couldn’t stop shivering and shaking. The violent, uncontrollable movements were horrific. A hot blanket was placed on me. It was apparently a kind used to treat hypothermia and shock, post anaesthesia (among other things). It was inflated with constant warm air by an inbuilt heating element. When the blanket is open it reacts with oxygen to keep warming the blanket for up to 8 hours without the need for a power source. Amazing invention! It thankfully managed to settle me a little.
I was so surprised at how I was feeling, as I’d been given a significant loading dose of Hydrocortisone just prior to surgery and straight after. This is always necessary as I’ve been on Prednisone for 9 years. Any kind of major physiological stress event, like surgery, requires extra corticosteroids to prevent an adrenal crisis.
I had the correct dose given and it’s always worked in the past.
Something wasn’t right!
I’m Drowning Here!!
It was Day 2 post surgery and I felt critical. It’s the only way I could describe it. The surgery had been successful as far as we could tell. It was complex and took over 3 hours but my Surgeon was happy from his perspective and I could already feel my leg pain was reducing. Surgery pain is always high but that’s to be expected.
I couldn’t function though. My eyes were excessively sore and blurry. My fatigue was beyond normal post surgery fatigue and I was having constant diarrhea. I was nauseated despite being given high doses of anti nausea medication and I was alternating between shivering and extreme hot flushes.
I had no fever, no infection. My blood pressure would be sky-high due to pain one minute and then just plummet.
When I woke up in the mornings I felt like I was awake in an unconscious state. It was an extreme, surreal experience.
Something just wasn’t right!!
Enter the Endo!
I’m under the care of an Endocrinologist due to my bone disease and she was involved with my pre and post surgical care as usual. She had charted my surgery Hydrocortisone and I was on IV Hydrocortisone for the first 24 hours following surgery.
On the second day, the IV Hydrocortisone was ceased and I was put back on oral Prednisone, still on a higher dose than usual, to continue to support my adrenal system during this early post surgery recovery stage.
Within six hours of that change, everything went from bad to worse.
At 5pm on that second day, I started feeling cold, had griping stomach pains and couldn’t focus on anything. Within half an hour my stoma went into overdrive like never before and continued like that until 8am the following morning.
Something definitely wasn’t right!
I advised the nurses of my symptoms and they assisted with pain and strong anti nausea meds, plus a double dose of vertigo pain meds, as I felt like the room was spinning.
In desperation, as the shivering kicked in, I emailed my Endocrinologist at midnight to explain my symptoms. We thankfully have a great relationship and she allows me to email her whenever I need to.
At 5am the next morning a nurse came into my room holding a phone.
“Your Dr would like to talk to you?” she explained with a concerned look on her face.
In a half confused state I kept asking what Dr? The nurse passed the phone to me and thankfully it was my Endo. She asked me a few questions and said I was going to be placed back on IV Hydrocortisone asap. I wasn’t going home anytime soon.
She wasn’t joking when she said IV asap. The cannulae was inserted within 10 minutes and I was receiving my first dose of IV Hydrocortisone within 15 minutes.
It’s amazing stuff. It only took 30 minutes for me to begin to feel more human again. While I still had some of the symptoms my Endocrinologist was worried about, they were not as extreme. I began to breathe a sigh of relief and relax a little.
I remained on IV Hydrocortisone every 6 hours for two more days while my medical team consulted with each other. The dose was increased a little on the third day but overall I was now comfortable and stable in the most part.
30 minutes before each new dose was due, the intensity of symptoms would return. I could feel concern creeping all over me. This just wasn’t my normal post surgery reaction.
The Consensus Of Opinion
My Immunologist was brought in to discuss the situation with my Endocrinologist.
Together (or the collective “we” as he likes to put it) they agreed that I no longer had a case of post surgery adrenal fatigue, I now had full on Secondary Adrenal Insufficiency (SIA)
A new diagnosis. As my Doctors and I looked back over the past four years, it was becoming apparent I had been living with this for at least 18 months.
The progression of my bone disease, constant fractures, intense ongoing pain, ongoing surgeries and long-term Prednisone, have all resulted in an official diagnosis of SIA. Thankfully blood tests also help confirm the diagnosis, as plasma cortisol levels can be checked.
It is a bit harder to get an accurate blood test result though when you’ve been on Corticosteroids for a long period, as the cortisol levels are skewed. A good Endocrinologist is essential in determining an accurate diagnosis and interpreting the results correctly. I’m very blessed to have one.
Finally, it was all beginning to make sense.
Adrenal Fatigue Vs Adrenal Insufficiency
You may often hear people say they suffer from adrenal fatigue. During stressful episodes in life our bodies can produce too much cortisol at the time of the event. This then drops suddenly post crisis and a debilitating form of fatigue may occur for a short period of time.
Adrenal Insufficiency (AI), or Addison’s Disease as it’s called if it’s the autoimmune disease version, is not Adrenal Fatigue. The fatigue component is just one symptom.
AI is a clinically diagnosed medical disease where the adrenal glands simply cease making enough of the hormone cortisol permanently. It’s not a common disease and it can happen for a multitude of medical reasons. It requires lifelong medication and monitoring.
In my case it’s a combination of factors. The physical stress of a painfully debilitating bone disease which keeps my body in a state of shock due to constant fractures is a major cause. Plus my long-term Prednisone use, has caused my body to no longer produce naturally, the necessary cortisol levels it needs to function.
It’s a serious disease as Adrenal Insufficiency can lead to an Adrenal Crisis, which can quickly lead to death if left untreated asap.
So Now What?
I was finally allowed home from hospital on an oral “loading” dose of Hydrocortisone. Eventually I’ll be taking a permanent maintenance dose.
While I’m still dealing with intense and fluctuating Adrenal Insufficiency symptoms, I have to stay on this high dose of Hydrocortisone. I also have to be closely monitored as an outpatient by my Endocrinologist and am on strict instructions to return to ER if my symptoms worsen.
I’m not out of the woods yet and given how long I’ve been trying to live without the correct treatment, it’s going to take a while to sort out.
I’m so relieved we know what’s going on. I’m so grateful this disease, unlike my bone disease, has a treatment.
So while I’ve been contemplating my new diagnosis and the word “insufficiency”, I’ve been reminded of some wonderful words of comfort from the Bible. Words focusing on sufficiency rather than insufficiency. Life giving words rather than energy draining words.
They really couldn’t be more perfect and they bring me such peace and comfort.
“My grace is sufficient for you: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”
2 Corinthians 12 v 9
Life with chronic illness is an ongoing roller coaster ride. A new diagnosis always changes the rules and creates new challenges. It’s hard not to feel overwhelmed, especially when the disease itself is depleting you of the “well-being” hormone you so desperately need.
It’s no secret my faith is my foundation in life and to be reminded and know God’s grace is sufficient for me and His strength is found in my weakness, is just the best encouragement.
Today all I need to know is that God’s grace is sufficient for me. The events during my recent hospital stay, the quick diagnosis from my medical team and the ongoing care, is testimony God’s hand is well and truly on my life, protecting me and safeguarding a future for me.
So with God’s grace and Hydrocortisone on board, if you think about it……. I’m not really insufficient, I’m actually very sufficient afterall!!
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