Tuesday, February 7, 2017

Mayo, round two - disappointment and emergency kits

So last week I went for my second trip to the Mayo Clinic in Rochester, Minnesota. This one I was a little more hopeful about since my last appointment went so well, but as it turns out, I should have gone into it with less optimism.

The plan this trip was going to be split up between brain testing, a visit with a nurse to show me how to inject my emergency medicine, neurology consult, and then a follow up with the endocrinologist.

I was a little worried about doing more brain testing because it's long, it's exhausting, and it's not what is wrong with me. But I went in, hoping that perhaps this new set of doctors could give me new information. The testing they did this time was nearly identical to what I had done in Duluth in January, with the exception of a few things. After my test I met with a neurologist who quickly glanced at my test results and basically asked what I was even doing there. I explained my story, my memory issues and how these might be considered normal for most people, they are so far from my normal and it's having a negative impact on my life. As it turns out, he realizes how rare AFE (amniotic fluid embolism) is but goes on to tell me that it doesn't really warrant studying so they just don't.

Mic drop.

Needless to say I left there feeling rather discouraged. I almost cancelled the rest of my appointments and went home, to be honest. I'm so tired of hearing from doctors that they don't know what to do for me, how to make things better.

Instead, I found a cafeteria. I got myself some lunch, with extra dessert, and I took my time eating it. I decided it would be stupid to cancel my appointment with the nurse considering I had no idea how to inject my emergency medicine into me. Sure, I suppose I could have figured it out in a pinch, but I'm here, I may as well find out how to do it correctly. As it turns out, it would turn out to be the most informative visit I've had since I had my AFE in August.

While my diagnosis hasn't changed, I've learned a LOT more about hypopituitarism and secondary adrenal insufficiency, specifically how serious they are when I get sick. A lot of the symptoms I have are also symptoms of both of those and even though I have mine under control with the help of medication, it doesn't mean those symptoms will go away, they just aren't harmful to me. So my feeling of constantly on the verge of getting the flu, complete with full body aches? Yeah, that's forever. YAY.

But I did learn that not only do I need to order my medical alert bracelet, but anytime I'm sick with fever and no vomiting and/or diarrhea, then I need to double or triple my dose of hydrocortisone for three days. If I'm vomiting and/or diarrhea, then I need to use my injection and go to the ER immediately to ensure I don't go into adrenal crisis. If I have surgery or have any kind of medical procedure (which is considered a trauma to your body), then I need to have additional Cortisol (hydrocortisone) in my IV and then double or triple my dose for three days when I come home. I also have to be especially careful on hot days or while exercising. No more super heavy exercising for me, which is really horrific because I have gained so much weight since having Lucy.

Which (laugh with me, folks) is because of the hydrocortisone!

On Friday I met with the neurologist who had a more complete view of my testing and my records. I came in pretty optimistic because he wanted to hear from me what my issues were before he looked at any of that.


I talked about what I was like before I had Lucy, and what I'm like now. I talked about my brain blinks, chronic migraines, dizziness, memory blanks, trouble concentrating, not being able to understand simple instructions, being confused on how to do regular tasks I know I know how to do, etc. Then he tells me my tests show I'm normal.

Cue frustration.

I start telling him that sure, I can remember the lists of words within an hour, but ask me about that list at the end of the day? Can't remember. Ask me tomorrow and I won't remember most of this visit. Apparently memory loss after losing so much blood is normal and there is nothing they can really do for me. I'm not a candidate for cognitive rehabilitation and I may or may not get better. They don't really know.

All in all?

I learned that neurologists don't have great bedside manner. And that I just wasted my time on that entire department. I left there feeling pretty down I wasn't leaving with at least something other than "take notes for yourself". I'm certainly not wanting to add another medication (which the neurologist insinuated) because I'm up to my eyeballs in prescription medication costs. He also made it sound like I actually want to be sick and maybe if I just stopped being depressed I would feel better.

Because certainly, if I could stop myself from being depressed just like that, not only would I do that, but I would sell it and cure others while becoming ridiculously wealthy at the same time.

Overall I'd say the only worthwhile part of my visit to the Mayo was the nurse visit. She gave me so much information, things I'm experiencing make SO much more sense now, so at least I have that. I learned that when I'm tired, I'm tired for a reason and I might not be able to fix it. I might actually just have to take a nap. I learned that as I get older, maintaining "normal" is going to get trickier since all of my medications will need to be adjusted so I can maintain at a level close to what I would be with a perfectly functioning pituitary gland. But I left there not taking that weird, blueberry sized gland for granted. Who knew something so tiny could wreck havoc on your body?!


Life Love & High Heels said...

And I visited while you were down!

Julie H said...

Well all that was shitty :( Minus the nurse. I hate when doctors have bad bedside manner.