Thursday, April 30, 2009

Hell on Earth, or at least Parry Sound

I'm home from the hospital, where I've been since Sunday. Technically, I went in Sat. night, but they sent me home Sunday mid-morning, to return a scant 5 hours later in full anaphylaxis again. Only this time, I managed to get a stomach bleed with it and now have an hiatus hernia from all the wretching/gagging/coughing/puking. Since Friday night, I have suffered 9 full anaphylactic reactions. I blacked out with the reaction on Friday night so after the epi, went to bed instead of calling 911.

Lucky me, I got to take TWO ambulance rides this past weekend. And they had to shoot me up with additional epinephrine on route.

I think I spent most of Monday curled up in a ball in my hospital bed, tears involuntarily streaming down my face, soaking my blue hospital gown. They gave me morphine, benadryl, gravol, pantoloc, some other stronger steroids and ranitidine via IV. The pain ebbed. My self-beratement lingered.

At our local hospital, they have a doctor on weekly rotation who handles ALL the floor patients. This week, it was my lucky week. I had a doctor who refused to return Dr. Vadas' phone calls to the hospital because he didn't "really feel speaking to him will shed any light on the situation, we have it under control" and "I have 30 other patients on this floor, I don't really have time for this call." He'd never heard of SM or Systemic Mastocytosis, nor did he think it real. He wasn't interested in learning about it either. Nor did he think we needed to follow the post reaction protocol of Benadryl every 3-6 hours; prednisone and double up on reactine (super simple and effective things to take and do.) He didn't think it possible that I could be having an allergic reaction THIS continous. He thought I MUST have an ulcer or some kind of gastric otherness going on. Nor did they think I needed to take Ketotifen and Gastrocom/Cromylyn (because they didn't have it in the hospital and had never heard of it.) Ergo...I rebounded...and continued to. Nurses were at a loss as to 'what' was setting me off; and this doctor busied himself with prepping me for a gastrectomy and/or an endoscope. Thank GOD the surgeon who was to do these procedures said he wouldn't do them on someone in anaphylaxis rebound and thought I'd been through quite enough.

So then this doctor decided to do a barium xray. They came to get me as I was coming out of another anaphylactic reaction (nurses shot me up with benadryl and epi), and I was wheeled down to xray puking my guts up. Ummm, the joys of 'allergic foam' and bile.

Add to this that because I'd been admitted to their hospital in the past 6 months and admitted to another Canadian hospital in the past year, I had my nose, mouth & rectum swabbed and was in "isolation/quarantine" until the tests showed I had neither SARS nor Swine flu. So, EVERYONE had to gown up (something I lovingly came to call as "the yellow gown of shame"), mask up, glove up before they came into my room, and I was taken down to xray, in the same gear, trying to throw up through a mask that I wasn't permitted to remove.

Needless to say, when we arrived in xray, I had a total meltdown.

The Radiologist took me seriously. And, refused to shove barium down me until we cleared it with Dr. Vadas. It took about 20 mins, but Dr. Vadas spoke to this doctor and told him that he'd like the barium xray done BUT they must have someone standing by with epi. So, it took another 20 mins for them to find my nurse, (an unbelievably gorgeous young man named Nelson - "Hi Fiona, I'm your nurse" [gahhhhhhhhhhhhh, WHY do I get the gorgeous man-nurse when I've been pushed through several bushes backwards, have no pants on, haven't bathed for two days, am about to drink some barium crap that will then cake to my lips making me look like Al Jolsen ready to sing "Mammy" and am swollen up bigger than big because of the monster steroids they fed me the day before!?!?!?!?]- who arrived with epi.) The xray with barium was fine. Good job I do yoga though...some of the twists and positions I had to get into would be difficult for some folks. It showed an hiatus hernia as the source of the stomach bleed, this newly acquired pain in my chest/back, unbelievable gut pain and burning (acid reflux is unbelievably painful in this manner), as well as the continued vomitting. Interestingly, the lower and mid gut pain totally subsided whenever they shot me up with benadryl (leading me to conclude that this pain was allergic inflammation pain) and came back with a vengeance as soon as the benadryl wore off.

The arrogant doctor came in yesterday morning and told me that I'd be released because they didn't really know what else to do for me (the kitchen had no idea what to feed me either.) The stomach bleed was under control and wasn't caused by an ulcer but rather from this hernia I've acquired, and it looks like I must be suffering with a serious allergic reaction.

No kidding...

So, he advised me to go home and follow the protocol that my specialist had me follow and to come back in if I couldn't breathe or had further serious anaphylaxis. He called in a prescription for pantaloc to help with the hiatus hernia and the reflux I'm suffering because of it, and percoset for the pain. Told me to take it easy eating and drinking. I hadn't eaten since Sat. morning. Been on IV the whole time. Couldn't keep water or ginger ale down, or why eat?

Add to all of this too, that I got my period during the first night of my admission to the facility. Seems like I get the bulk of my reactions during or right before my period. Dr. Vadas says there seems to be some sort of link between flare ups and our hormones.

I was so glad to get the hell out of there because I can take better care of myself.

And, my epi spray arrived today from the USA. Dr. Vadas wants me to have this but be careful about using it. He thinks we need to cut the response time down as much as possible.

So, I'm exhausted, home and happy to be alive.

I hope I never have another 9 anaphylactic reactions in a 5 day period EVER again.

1 comment:

Foxxy One said...

OMG you poor dear! I'm so sorry for the struggles you've been through and the pain you are in. Please know you are in my thoughts and prayers.