Thursday, March 14, 2019

Breakthrough

Today stretched to infinity and beyond.

Waking up at 5 am the week Daylight Savings Time hits will do that to you.

I schlepped my tired ass to endo #2 at the butt crack of dawn this morning. This time I also brought an entourage of support with me. Yes, I called in the troops. I asked the baddest mofos I know to be the heavys at my appointment.

"Don't let them dismiss me."

"You can say things I can't."

"You're the bad cops. I'm the good cop."

Aaaaaand I didn't even need to do any of that.

The endo was a brilliant physician. Which I knew, as I'd seen them before, but that first 'diagnose and ditch' endo appointment made me panic a bit.

The highlight reel...

1. I have support for my efforts to qualify for the NIH study. They'll write a letter and help me with switching around meds for additional blood work. After two doctors looking at me like I was crazy to even consider the NIH, this was a welcome surprise.

(Also, I feel like more doctors needs to use the Yes Principle of Parenting. Say yes whenever possible. What does it hurt them if I go to NIH? Sure, I get not wanting to mess with the meds and have that liability, but we aren't even at that bridge yet.

Let the NIH decide if I'm a candidate, just give me the chance, we can dither about managing meds and all that IF I actually qualify. Trust me, I'll keep going to docs until I find one who will work with me on this...I just need you to facilitate this interim introductory step. That's it. I'm not asking ya to marry me, and I'm sure the NIH would be super thrilled to know you're keeping patients away from their studies...for what?)

2. I saw my adrenal glands on the CT scan. OMG. It made me so sad. They are so atrophied. So so so atrophied. I had NO idea this was what the steroids were doing to me. None. The endo showed me and explained the devastation. There are literally black, empty holes that should be filled with adrenal gland. It was really sobering to see that.

Here's a pic I found online. Mine are like the ones on top. (Middle is normal. Bottom is excess cortisol production as in Cushing's.)



3. The tumor is teeny tiny. I might not even be a surgical candidate, and with as atrophied as my glands are, I'm no longer sure it's the right move anyway. (I still want to go to the NIH though and have them tell me what they think.)

4. I probably do have some periodic adrenal insufficiency going on in the background. This was an interesting part of the conversation. I was told I should always have steroids on me...basically act as if I'm insufficient.  Unfortunately, I know this is a controversial stance that 99.99999% of other physicians will never support. However, I did a little googling, and it does appear to be the case that standards are changing and understanding is expanding with regards to adrenal insufficiency.

5. First physician to question if all the tumors and cysts and my health history are connected somehow. This is my question, too. My body is going in a million different directions all at once. I'm growing a lot of different things and it's all happening in a vacuum??? Naw. That would make me a pretty special snowflake. We just don't have any answers for this question...we need the NIH for that.

6. My DHEA is low, no question, but there's no way to really fix it and supplements are not recommended.

7. I'm guessing I'm going to end up with full time Secondary Adrenal Insufficiency at some point. There is little adrenal gland left. My next bout of SAI is likely to be permanent. We didn't discuss this, but between our conversation and my reading, this is my sense of things. Time will tell.

Next steps...wait for the letter, call obsessively about the letter...on all fronts. I've requested letters from all endos. I don't care who gets it to me so long as one shows up.

Also, I need to see an eye doc for my eyeballs.

And I guess call the OB's office because they seem to have dropped off the face of the earth. I had one call about the uterine ablation promising a date and then...crickets.

Last, time to get the next MRI scheduled. Let's see what the tumors have been up to since October.

Wednesday, March 13, 2019

Hip with the Hep

Saw the hepatologist and got the blessing to run another MRI to see how the tumors are behaving six months out. If it's all good, no surgical menopause.

Crossing fingers.

Come on tumors! Shrink!

At some point, something has to be in the textbook majority. I can't be the 1% outlier for every fucking thing, right?

That has to be statistically improbable, right?

RIGHT?

Saturday, March 9, 2019

Tired

This was my week.

Monday:
Ob/Gyn appointment to set up uterine ablation because of the liver adenomas.
Corresponded with lots of hyperaldosteronism patients.
Researched an NIH study a lot of hyperaldosteronism patients apply to and sent an email to lead researcher.

Tuesday:
Heard back from NIH. They are actually interested in my case, but I still have things to do to qualify.
Got a phone call from the Ob/Gyn nurse to start the process of getting a procedure date.
Called diagnosing endo to start gathering what I need for NIH.
Called second opinion endo and got appointment moved up to next week.
Called the hospital to order records.
Went to hospital to pick them up.

Wednesday:
Met with primary care physician to update them and discuss NIH study.
Went for mammogram--it's time and I'll need to prove I don't have breast cancer for NIH.
Ordered more hospital records trying to find imaging for NIH.

Thursday:
Ran to hospital to pick up more records.
Spoke with pastor and explained everything. Somehow triggered a meal train that makes me both grateful and ashamed at the same time.
Took kiddo to the dentist for a filling.
Called endo again as they still had not returned my call.

Friday:
Endo's fellow called and we discussed what I needed for NIH to decide if they should proceed with me or not.

In between I homeschooled the kiddo, felt guilty about not working much, and didn't cook any meals--we lived on take out this week. I just couldn't handle cooking.

My eyelids continue to be swollen. My right eye seems to be enlarged now, but it's subtle and maybe I'm crazy. I almost went to urgent care, but am trying to hang tough until the second opinion appointment next week. I don't feel good, but I don't feel as heinous as I did last weekend. I keep hoping this will resolve.

Also, no one wants me to go to NIH. The lack of support is stunning and I don't understand it. I keep getting asked 'why do you want to go to NIH?'

Ummm...so I don't die because of y'all?

Medicine has been so god awful at diagnosing ANYTHING, and I have a strange pattern of tumors and cysts that I think medical care that looks at ALL THE THINGS just sounds SMART at this point.

I am not looking for 'you're fine' blow offs. I want empirical data that proves I'm fine. I don't care what medicine thinks, I want data. Prove that medicine works and that I'm full of shit. PROVE IT.

NIH will scan the shit out of me. Blood work me like a starving vampire. Genetic testing. AND I can donate my tumor (if they decide to take it out) to help others. I donated my liver tumor to research. I am HAPPY to give science more if they want it.

PLUS...it's free. It is a major financial burden to max out our insurance two years in a row. If I can save us money, I need to do it. My biggest fear is destroying my family financially with all the sick.

AND it's not an experimental study. No meds. No crazy anything. They are collecting data on these tumors so the care is standard but very thorough. No worries that I'll get cancer or lose a limb from some untested drug or anything.



Monday, March 4, 2019

Stockholm Syndrome

I'm no longer able to reliably tell a doctor anything. My idea of normal is so warped that I don't even know what to say anymore.

"Do you have muscle pain?"

"No."

What I fail to add is... "Not beyond the normal every day muscle pain."

See the problem?

Being sick is my normal. I can't report my symptoms accurately.

*face palm*

At least the blood work tells the story on this latest round of medical mayhem.


Sunday, March 3, 2019

Conn Logic

Before I get into what I actually came here to bitch about today, I'd like to document some of the latest fuckery my body has produced.

I couldn't sleep on Friday night. My brain was overwhelmed with data and too busy making connections and synthesizing information to let me sleep. I also learned about the possibility of ending up at NIH late in the evening, which pretty much obliterated any melatonin my brain managed to make.

Too much to chew on.

Saturday we were due to attend an event at a local university about an hour away. I'd been prescient and arranged to have a friend join us and drive us down. So I didn't have to worry about driving, which was good because I was barely functional.

I almost canceled.

For all that I feel like shit the vast majority of the time, I mostly meet all my commitments. I mostly don't flake. However, I reached a point this weekend where I ran out of 'suck up' and had to cave.

Saturday though, I pushed myself to keep going. I tried to set myself up for success and took some prednisone, hoping it would kick me into normal like it did on our trip to Chicago.

We arrived at the event and I was just falling apart. Chest pain, weakness, profound fatigue, my brain wasn't working well, my stomach felt like all the tumors in there were swelling in unison. I was not making it.

Now, I'm used to my body's voodoo, so I did not immediately run to the ER, but I thought about it, and I knew the fact that I was thinking about it meant shit was real.

What can I do? What can I do? The thought raced through my mind as I drifted through the event in a fog known as WTF is wrong now?

I'd brought some granola bars so I tried that. Then tea. Then water. More water. Nothing helped.

I then decided to go for salt just because it felt so much like adrenal insufficiency and I figured my blood pressure was low. A bag of chips I didn't even like was the best I could do. I forced them down.

Voila! About twenty minutes later, huge improvement.

Since it was behaving so much like a weird adrenal thing, I added in sugar too.

Suddenly I felt human. Amazing.

I continued with my day, which was quite busy. The kiddo did her STEM career day thing at the university and then we hustled to her home school band concert. After that we went out for dinner where, scanning through my phone while waiting for our food, I realized, I was scheduled to teach Sunday School the next day.

I started the process of mentally preparing myself to slog through that. I was starting to wilt again and just felt off in general. The last thing I wanted to do was anything at all, but I'd made a commitment.

It was the hubby who gave me a reality check. "You don't feel good. Why are you going? Tell them you're sick."

A light dawned. Yes. I could call in sick. It hadn't even occurred to me. I've managed to avoid it so far, but maybe this one time I could give myself a break. So that's what I did.

Which was good, because I don't feel all that much better today. I woke up with huge, swollen Dumbo-esque eye lids, I assume from yesterday's salt and my energy is in the toilet. My brain is struggling. I set off a family panic that had us all looking for my phone when it was in my pocket. I've missed little details that caused little accidents. It's just not a good time to try and make me go forth in the world and function.

I hope I'm making sense so far actually.

So that's been the weekend. I hope tomorrow is better because I need to drive to a doctor's appointment.

I will also be calling the NIH. Thank god for patients who blaze a trail and leave sign posts. There's a big study for primary hyperaldosteronism, and if I qualify, that's where I'll be as things stand now.

Further, I'll be calling to ask to be added to the next endo's wait list as I think sooner is better. And calling the primary doc to set up an appt there for anything I need to do for NIH if I can't get into the endo faster. I'm going to do a basic blitz of doc appts to try and hack the process and get 'r done.

My blood pressure went high in 2010, but my HPA axis quickly suppressed and I didn't need bp meds for a while. Once my system was working-ish again around 2013, I went back on meds and it looks like in 2017 I started spironolactone.

Sooooo here's the deal...

Usually, if your hyperaldosteronism wasn't properly managed past a certain amount of time, you're kind of SOL and they won't do surgery (at least based on my reading). On paper, I had improperly managed hypertension for around 7 years, but if you dig deeper, the secondary adrenal insufficiency changes things. Predinsone is anti aldosterone and therapeutic so hopefully, that will help me qualify for surgery (if I opt for an adrenalectomy).

Either way, I'm so dang symptomatic of *something* being way off that I hope there will be serious consideration given to removing the tumor.




Friday, March 1, 2019

The Long Conn



So I have Conn's Syndrome.

Actually, they called it hyperaldosteronism. I picked up Conn's Syndrome off the internet.

The adrenal adenoma is actually doing something, which I kind of figured it was because I can feel stuff in there that ain't right, and thanks to previous inflammation, I actually know where my adrenals are.

I did my best to deny it, but no, the tumor is legit doing shit.

This endo's rec was do nothing. Just take spiranolactone and watch my blood pressure.

I'm going for a second opinion. I don't like how my adrenal blood work looked and sometimes adrenal tumors should be removed.

Thus far in this journey, I've learned to never stop at just one doctor.

Along those lines, this meme popped up the other day and got me steaming....

Please do not confuse your Google search with my medical degree.

Oh really? How about...

Please do not confuse your medical degree with my experience with a rare disease and with other patients of the same disease (we all talk) when you've never seen a case.

Please do not confuse your medical degree with the fact I've read all the studies, talked to all the patients I can find and am actually IN my body FEELING this disease.

Please do not confuse your medical degree with me knowing my body's different patterns of disease.

Please do not confuse your medical degree with actually providing high quality care.

Please do not confuse your medical degree with eliminating implicit bias.

What I want from your medical degree is intelligent medical care that goes beyond the obvious.

I ALWAYS thought my high blood pressure was weird. ALWAYS. I ALWAYS wondered if it was a tumor. ALWAYS.

Medical Degrees are shit.

Medical degrees saw the fucking adrenal adenoma on CT in 2013 and NEVER TOLD ME.

It's what you do with your degree that counts and too many of y'all are doing JACK SHIT.

If I went to a doctor today and didn't disclose the tumors, they would tell me it was my weight. It ain't my weight, geniuses. How many would look beyond the obvious? Less than 1%.

Occam's Razor sounds smart until you realize it cuts everyone who doesn't fit.

Wednesday, February 20, 2019

Hello? Is this thing on?

Bullet point update and data dump...

1. Had a minor infection in on incision. Antibiotics fixed it. Surgeon did not care...which is what I expected.

2. Finally saw endo about adrenal adenoma. It's been there since 2013 and no one told me. Possibly it has grown a bit. It probably isn't doing anything but they ran blood work. Am Cortisol is 5,  so right there at the bottom of the normal barrel. Also I'm told I am likely deficient in DHEA, but I shouldn't do anything about it because of the hepatic adenomas.

3. Current plan is to push for MRI to see what the hepatic adenomas are doing because if they are shrinking, I'd prefer to skip the surgical menopause. I've learned quite a bit about menopause now and hooooooly shit...nope, don't want any part of that mess if I can help it. I'll try a uterine ablation first.

4. I tried to develop a coffee habit. It's supposed to be good for the liver, but my liver is not interested. For me, coffee triggers a lot of liver pain. So no more coffee.

5. Energy is low. I'm having a hard time waking up in the morning and I've had to take some 'bed rest' days which do actually help. I don't know what the problem is. Adrenal, liver...what? But it's atypical. I felt better in January. February has been a slog of wishing I was Rip Van Winkle. So. Tired.

6. Met a patient with around 30 tumors like me and they are doing embolization on all of them. Interesting.