I lost another organ

Every week, I get up to 11 liters of IV fluids and medical supplies delivered to my home, thanks to my health insurance I have under the ACA.

Every week, I get up to 11 liters of IV fluids and medical supplies delivered to my home, thanks to my health insurance I have under the ACA.

I've been dehydrating faster than usual lately. I know why. I didn't want to tell you. The stress from fighting for the ACA was too much for my barely working adrenal glands - which is a tiny but crucial organ that is part of the endocrine (hormone) system. Whatever function I had left, is likely gone. I started a drug called fluticasone last week, which I think has been working. It's acting in place of a hormone called aldosterone which my adrenals should be making, but can not anymore. 

Aldosterone is in charge of reabsorbing fluids (you know when you pee a lot when you drink booze? It's because aldosterone stops working, hence the dehydration after a night of drinking.) The bummer isn't just that the drug has a lot of side effects (which thankfully I haven't noticed...yet) but I'll have to be on it forever. It's replacing my adrenal function now along with the hydrocortisone and DHEA I've been on for 6 months. This makes me sad. I essentially lost another organ.

In the mean time, while waiting for this drug to kick in and praying it works, my prescription for home fluids is now ELEVEN LITERS per week. THIS IS NOT NORMAL. It is very dangerous if my body can't stay hydrated! And this is just ONE of the many things I'm dealing with - but it's a biggie. When I'm dry, I have a lot of pain and food is even more likely to get stuck in my intestines. Plus, our bodies are primarily made of water so if I can't hold it in....

Lately, when I've been waking up drier than usual and I can see my hands starting to crack from simply being outside, I get really, really scared. I love walking outside and stupidly did it a couple of weeks ago - in the heat without giving myself fluids. I was so dry by the end, I couldn't even open my hand....

THE DEHYDRATION BACK STORY

This is my "baseline" - what my hand SHOULD look like. I took this after giving myself fluids. I determine my hydration status by several things - but my hand is a quick marker.

This is my "baseline" - what my hand SHOULD look like. I took this after giving myself fluids. I determine my hydration status by several things - but my hand is a quick marker.

One of the biggest factors impacting my digestion and pain is dehydration. It took me a LONG time to figure this out. When I was getting chemo in 2014 (which is very dehydrating), I was so dry, I begged for extra IV fluids. It was the summer in San Diego (which is a desert climate) while my body was adjusting to losing so much of my colon (which is in charge of reabsorbing fluids).

But the doctors would not prescribe them to me. Why? When I was in tears at my oncology office, the office manager pulled me aside and admitted it was because they didn't "make much money" giving it to patients.

Whaaaaa? THIS is one of the reasons I've been fighting so hard for the ACA. I've barely kept myself alive the last few years in the current medical system. And you can't blame Obamacare. I've been a medical patient on and off since 1989. This is how our medical system is set up: it's a profit-driven business model. Which has only gotten worse in the last ten years (more on this later).

WHY AM I PRONE TO DEHYDRATION?

When I had an inflammatory bowel disease from ages 17-26, there weren't many drug options. I couldn't take the typical sulfa drugs (it caused arthritis when I was only 18 - it's in large part why I went into natural medicine - my body has never responded well to medications).  The only drug that calmed my inflamed intestines was prednisone.

I was probably about 19 years old here? Around 1990. The high doses of prednisone made my face puffy which I HATED. 

I was probably about 19 years old here? Around 1990. The high doses of prednisone made my face puffy which I HATED. 

Prednisone is a super harsh steroid. It's a miracle drug that saved my life several times. But it comes with a price. It has a LOT of short-term and long-term side effects. Back then, I had severe night sweats (I'd go through up to four t-shirts per night), puffy face and stomach (ugh in COLLEGE!), insomnia, hyperactivity, probably depression. It also wrecks the adrenal glands and ruins bone density. I know it's major denial, but I've never had my bones tested...praying all the exercise will make a difference.

Short term prednisone isn't a problem so don't worry if you've taken it at one point or another. The problem for me is that I was taking high doses (up to 60mg) on and off for a DECADE.

Not good.

What is the worst thing I could have done for my adrenals after finally healing my intestines and getting off prednisone? Move to a stressful city and lead a stressful life doing a stressful career. (Pro tip: high dose prednisone should be followed by adrenal support, which I didn't know then....)

BACK TO THE PRESENT

I took this at the post office a few days ago. I can watch myself literally drying up while running errands in the heat.

I took this at the post office a few days ago. I can watch myself literally drying up while running errands in the heat.

Not long after finishing chemotherapy in 2014, I had horrible back pain. I've had severe back pain a few times in my life but nothing like this. It would spasm day and night throughout the spring of 2015. I couldn't figure out how to relieve it other than going to acupuncture.

I had a bowel obstruction in June, 2015. Food got stuck for the first time in a major way.

The next month, after doing the Ovarian Cancer Fundraiser walk in 90+ degree weather, my dad noticed I was slurring my words and stumbling around and suggested I might be dehydrated (I know, I know, insert funny drunk comment here). He is a hardcore athlete and recognized it from his races.

When I start to flake, I know I'm overdue for a bag of fluids.

When I start to flake, I know I'm overdue for a bag of fluids.

The ER was very dismissive of me, EVEN WHEN I TOLD THEM I HAD NO COLON. Back in California, I still couldn't get IV hydration through my regular docs. I found a clinic with a more integrative MD that would give me the fluids. However, they had to insert them into my veins, not the port in my chest which sucked. When you're dehydrated, it can be extremely painful to get an IV. Plus, my veins were fucked from getting blood drawn from them during chemo. Nobody told me I should have had them draw from my port (pro tip). To this day, it's very, very challenging to access a vein in my arms and hands. There is too much scar tissue.

It's been a long journey. But after much trial and error, I figured out that the back pain was from food getting stuck in my intestines which is more likely if I'm dehydrated (if I get even the slightest twinge now, I know I have to stick to liquids until it abates and I can go to the bathroom). Fancy that, mainstream medicine, all these symptoms are CONNECTED.

It wasn't until this spring of 2017 that I realized that I needed daily fluids instead of jamming 2 liters in 2 hours (most people get 1 liter over 2-3 hours) a couple of times per week. 

There is a very strong correlation between fluids and how well my intestines move food through. Sometimes I have to gulp a full glass of water WHILE I'm on the toilet! It activates something. But I don't know what which is why I'm sharing my case - hoping to learn something new from my smart community. (Another reason I've been reluctant to share my case...there are many embarrassing details!)

It's hard to see but I'm giving myself fluids here while out of town with my nephews. It's MUCH better than sitting in the hospital! I'm so grateful for the home fluids that I can get through my insurance under ACA!

It's hard to see but I'm giving myself fluids here while out of town with my nephews. It's MUCH better than sitting in the hospital! I'm so grateful for the home fluids that I can get through my insurance under ACA!

Thankfully, my awesome naturopathic doctor knew to put me on the fluticasone to help my body absorb fluids instead of peeing them straight out. I've been on it for 8 days and so far and I *think* it might be working. The fluticasone has a lot of hardcore side effects but so far (fingers crossed), I haven't noticed any. We may need to bump up the dosage up but it's hard to say now, especially with the hot weather. I'll need more time on this dosage to determine how much I need during different times of the year.

For now, I will keep chipping away at the many complications caused by losing so many organs in an already fragile body. But I wanted to explain this piece of the story since it's gotten worse and people may be wondering why I'm leaving the needle "accessed" in my chest all week long. I hate leaving the needle in but I'm getting used to it. It sucks to not be able to take regular showers. But I'm so grateful to be able to give myself fluids during the week whenever I want that I'm no longer irritated with it anymore.

That's enough for today. It's a lot to comprehend, thanks for listening. And THANK YOU for your support and love thus far. Let's hope I find the answers in the nick of time...

DO YOU KNOW A SPECIALIST? I've hit so many walls with mainstream doctors that I'm now turning to my ever-reliable online community to help me solve my medical case. I've been piecing it together for months now but have felt overwhelmed at the idea of sharing it because there are so many variables to address and it's embarrassing! If you know of any specialists that focus on the endocrine system and/or digestive system, I'd love their contact information.