The Week From The Pit

Okay. 

So Sunday was okay.  It was mostly fun.  Just really, really, busy.  Went with my mom and dad to get them a new computer and therefore assisted them in joining the 21st century! Whoo-Hoo!!!  Then it was hooking it up, (Thank you Doug) and downloading and uploading and sideloading (hey, don't want to leave anyone out)...

Then lessons.  Oh, and lunch in between at Steak and Shake, which Jacob loves, everyone else likes, and by everyone, I mean EVERYONE.  Oh my gravy.  There were SO many people there.  Screaming kids, whiny adults, weak and hungry normal people (that would be us).  Well, kids eat free on weekends.  Ah.  Note to self:  being in a room with that many people, unruly children (and therefore redundantly, germs), ridiculously inept parents and a bunch of hungry people is NOT worth a free, otherwise overpriced, grilled cheese and juice box.

So we move on to Monday.  Just felt like crap.  It's time for pheresis, and the day before just knocked me out.  Very long day.  Very long.

Tuesday AM started out better.  Started.  Until I clean my trach.  It had been hurting for a couple of days, and sometimes it's just an irritation that goes away, and other times it means I have to change trachs. (I have 2).  Sometimes just taking the one I have in out, washing it and putting it back in does the trick.  (I always get two of the same exact thing, but one is always more comfortable.  Don't ask.  I don't know).

So I take this one out, and put it the other one, and all h$ll breaks loose.  Or, specifically, a gigantic granuloma breaks lose.  So what is a granuloma?  "A granuloma is a benign growth that results from irritation or trauma." www.voicemedicine.com


So.  I have several granulomas around my trach, and they will never completely go away.  Why?


"Simply removing the granuloma surgically without correcting the irritation that caused it will result in regrowth in the overwhelming majority of cases. In fact, treating the underlying irritation properly generally makes surgery unnecessary, as the granuloma will recede by itself."  www.voicemedicine.com 

And since my trach is the underlying problem of the irritation, and I have to breathe.....well, you get the picture.       

So Tuesday a part of a giant granuloma broke loose from its base, and decided to occlude about 1/3 of my airway.  Now, when you already have about 60% lung function on your best day, a 33% occlusion of your only airway is NOT a good thing.  I tried to stay calm, as freaking out would only make breathing more difficult.  I immediately jumped on facebook and asked for prayer, because I KNEW I could not do this alone.

I ended up going to the ER at Metro, because neither Allegan nor St. Mary's in Grand Rapids have an in-house ENT.  I don't have a babysitter, so my sister (THANK YOU THANK YOU THANK YOU) went to my parents house to watch Jacob (I didn't even know at the time they had a dr. appt.)  So we head north, 45 minutes to my folks', and head to Metro.  I have to say, they are efficient!  I was being brought to a room before Doug even got in from parking the car!  There were NO other patients waiting, which is why...)

So the ENT comes down, and after much debate, I take the trach out, and she starts burning off the offending part of the granuloma with silver nitrate.  Anyone who tells you that granuloma tissue has no feeling, or that silver nitrate doesn't hurt, LIES.

I have used silver nitrate before on the outside of my stoma (the whole in my neck) but NEVER on the INSIDE.  Good Lord in Heaven, now I know why.  So here I lay, on this gurney, half sitting up because I can't lay flat, and this woman is burning flesh out of my only breathing source.  No anesthesia, no numbing anything, no painkillers.  Just Git-r-done.

THEN I had to shove my trach back into this pain filled burned and bleeding cavity while 17 people and their brothers watch. And I had no mirror. It's very difficult to override your brain, (which is made to alert you to AVOID pain) and cause yourself pain on purpose.

It's like those old cartoons with the angel/devil on the shoulders:

Brain: NO!!  Stop!  This hurts!  No pain!  That's what I'm telling you!!

Hand:  Shove it in, you need to breathe!

Brain:  No!  I won't let you!

Hand:  I will be victorious {insert evil laugh, cuz I can't right now}

Anyway, you get the idea.  Finally get it in, and the first thing I say is "PAIN!"  Then comes the morphine, and I forgive everyone in the room.  Even my brain and hand.

So the beautiful thing about silver nitrate is that is keeps working.  So today, I still feel the effects of the silver (even though they "neutralized it" with saline...)  mmm-hm.  My stoma feels like someone took a hot curling iron and decided to try to "insert here." OUCH. Now I have to make an appointment with an ENT to have the rest of the granulomas surgically removed. Oh joy, and happiness!

But I can breathe.  So.  It is what it is. (However, the next time I hear someone complain about something compeltely insignificant or just plain stupid like a bad hair day, ya better duck...just sayin'.)

Then comes Wednesday:  Up at 5:20 AM to go to get tortured plasmapheresis.  I have to say, it couldn't have gone smoother, thank you Jesus!!  THEN we got room service for lunch (that was cool) and mine was free! (Well, we all know what free means) and then it was off to the endocrinologist.

From that appointment:  My blood sugar is perfect, don't change a thing. (yay!)  Who is my fibromyalgia doc?  Don't have one.  No one takes it seriously.  So we're working on that...  I asked her about who to see about chronic pain.  She said call your doc and tell him you want to talk about a "pain contract."  That means that I sign something that says they'll give me painkillers if I agree to not sell them or snort them or try to get more from another doc, etc.  

I was like, "Oh, just like the thing I have to sign when I get my allergy medicine that says I won't make meth."

Like if I was some creepy criminally minded drug addict and meth head my signature would be more important to me than my habit. Whatever.  Just another ludicrous example of the society we live in.

So yeah.  Today it's just me and Jacob and three dogs, and I feel like death warmed over from pheresis, and the burning, bleeding trach adds a nice touch as well.

But I'm here.  Tomorrow is day 2 of pheresis, then Tuesday I have to have a tooth rebuilt, and Wednedsay, back to the hospital for pheresis and an appt. with my pulmonologist.

I LOVE being me!!! : )

Thanks for hanging in reading this...I know it was quite long, but as you can see, I haven't had much time to post.

PPPhhhhttttttt.

Don't even know what else to title this! What a day. I know I'm hard on myself, but it felt like EPIC failure. I'm so exhausted. Today was the first day alone with Jacob since my crisis. I don't know how to do nothing. But if I don't learn real quick, I'm gonna end up in the hospital again, and again, and again.

Then I deal with stuff like this:

I call my primary doc (PCP) to get the blood and sputum culture results from when I was in the hospital 10 days ago. (And after a complete round of the ONE antibiotic I know I can take, so really what's the point in even getting the results??) Anyway, it was like 10:00 this morning.

About 4:15, I decide I'm finally going to get in the shower. Phone rings before I get in. It's my PSP's nurse (She's great, actually.)
Nurse: So I've been going back and forth with Dr. _____ and he doesn't think he can treat you without seeing you, without knowing what's going on. He suggests calling the doctor who treated you.

Me: {wondering what showed up in the tests if he won't "treat" me} I have called Bronson 4 times and have spoken to twice that many people and they keep telling me to call my PCP.

Nurse: Oh, you don't have the results yet?
Me: Oh my GOSH. No.
Nurse: Ooooh.....okay, just a minute.

Comes back after a minute: So who ordered all these tests?
Me: I have no idea. They just did them at the hospital after they admitted me. They poked and prodded and tested all night long. I guess they didn't believe me when I told them it was a myasthenic respiratory crisis.

Nurse: Right. Um....Okay, let me talk to the doc and I'll get back with you today.
Me: Good. Thanks.

So I get in the shower, because it's already 4:30, and who REALLY calls right back?
This nurse.

Nurse: Okay, all the blood cultures show nothing, but the sputum culture shows some kind of staph and Dr. ________ wants to treat you with doxycycline.

Me: Staph? What the..... I've already been treated with a full course of antibiotics, and besides, I can't take doxycycline. So shouldn't the Cipro have taken care of this? It's not the "icky" staph, right? {I'm thinking last time I had staph pneumonia I almost died...if I have staph, shouldn't I feel worse than THIS?}

Nurse: Oh, no. No, not that kind. I'll talk to the doc about the antibiotics and call ya back.
Me: K.

I believe her this time, but I'm half done in the shower, so I have to finish up. Had plenty of time this time, then she called back and said, yup, the Cipro should've taken care of it and you should be good to go.

So after TEN days, I find out there WAS something but it SHOULD be gone now because whoever the heck I saw gave me antibiotics before seeing any test results.

I'm sorry, but what the hell???? I went to a "good" hospital. They are supposed to know things. Some things. I saw at least 2 different neurologists. Alllll the stress of waiting for results and calling every doctor on the planet 17 times. What a joke. And I wonder why I end up bawling at the end of the day.

I would ask Calgon to take me away but even if I did, I'd still be there.
Ya, I know.

A Page From My Journal

When I was in the hospital trying to get a diagnosis, my mom kept a journal for me. Yes, I do know I have the best mom ever. I found it on the shelf yesterday and was reading through it again. Thought I'd share an entry or two. My words are in [brackets].

October 18, 2000 [the day after I arrived by helicopter to University Hospital in Ann Arbor]

Mom and Dad came in early this morning. I am extremely unhappy with this tube down my throat. It is most annoying. I'm asking when this tube is coming out. They try explaining that I need it for breathing. This disorder [all they knew at this point was that it was neurological] I have has made my muscles weak and has done some nerve damage. They think it's called "myasthenia gravis." This can be treated with a treatment called "blood plasma exchange" [plasmapheresis]. Also cortisone is given and possibly other drugs as long-term treatment. [There is no cure].

All I know is I'm laying here with no underwear on, tubes everywhere and I can't communicate. I try by writing on paper with a marker. I haven't lost my sense of humor though. I wrote, "Do I look fabulous or what?" It made mom and dad laugh.

October 19, 2000

This morning Dr. Smith talked with mom and dad. Now he says they aren't sure if it's myasthenia gravis because although I have many of the symptoms there is a couple that usually begin like drooping eyelids that I don't have.

I need another EMG to find out. I didn't really care to hear that either. This is a nerve test and ends up with me being poked with needles [not to mention shocked!]. I still want this tube out "now!" My humor shines through once again when I write "Am I still alive?" [I'm not sure I was actually kidding at the time!]

Later today the doctors say they think I may have something called "Chronic Inflammatory Demyelinating Polyneuropathy" or CIDP [not to be confused with lung disease called COPD].

The treatment for this one is the same as the MG so they say they're beginning treatment. I'll have one today, one tomorrow, and 3 next week. Also had another spinal tap today. More poking. They're sending my spinal fluid to Boston and Maryland for testing.