Horror story from Spectrum Health United Memorial Hospital, 605 S. Bower St., Greenville, MI 48838

Here are the mails concerned:
First mail dated October 16 2009 at 15:02 pm UK Time (or BST = GMT +1 hour):

I did end up having my son take me to the ER last night to try to kill the migraine and shakes. They basically looked at me like an idiot when I used the word seizure and said "you must have just been cold". DUH, what I am trying to explain is that APS (which I had to explain to both docs) can possibly be the cause of this. Most migraines come on when INR is higher than 4.5 or lower than 3. I told them that the first thing they needed to do was check my INR. Can u believe they REFUSED to check it?

Then to address the migraine the doc asked me what they normally did and what worked. I told her they give me a cocktail of Compazine, Benadryl, and Dilaudid. So the nurse comes back with Zofran, Tordol, and Benadryl. I told her flat out that she could give them to me but it was pointless. Then the doc comes in and says she never ordered Tordol. Apparently the nurse had to go show her the orders. The doc comes back and says "well, apparently you have a problem with the meds I ordered?" I said "my only problem is that I have been through this a thousand times and I can tell u right now that Tordol is like injecting me with water". She finally agreed to give me a shot of Dilaudid (which meant ANOTHER 20 minute wait) and low and behold the migraine started to give. She sent a PA in to discharge me and I told him had they listened to me I could have been out of their space much earlier. He said "well, she's new and said that you had only been in three times this year with migraines and last time they didn't give you dilaudid"...

Second Mail dated October 17 2009 at 01:12 am UK time (or BST = GMT +1 hour):  

WEll, I just got home from the ER again. They ranbatteries of tests and only after I told them 10 times and then DEMANDED to have my INR checked did they run it. I figured something was up since they had to poke me more than 10 times using 3 different techs to try to get blood. Hmmm. well, they checked for flu, pnumonia, etc.. Came back and told me that there was nothing major wrong but I might have a slight case of the flu causing the cold shakes (they had a name for it that started with a P but with my migraine it didn't really stick with me). When I asked what my INR was he said "it was fine: 1.2" I about jumped out of the bed. I said "what part about APS and a 1.2 INR are you people not getting? I have stroked 3 times and each time was because my INR was 1.8-2.4. You are just going to discharge me knowing that this level could kill me???

I was told to take an extra coumadin when I got home and call my GP on Monday. I about freaked on him. Luckily I have a supply of Lovenox at home. I took a shot as soon as I got here (about half an hour ago) and took two of my coumadin. WTH is wrong with these people????? AUGHGHGHGH! Sorry for the venting, but I guess I figured out why I have been having these seizure/ migraine episodes. Thank God I have learned enough about my disease process and have this group to rely on for information or I could have just left never knowing that I was half a step away from a stroke or DVTs.

Thanks to all of you for being there! Blessings

Send me the name and address of the hospital, and I will publish it on the front page of my website (not a massive reader base, but it does get nearly 200 new people visiting the page each month, so might have some knock on effect if picked up by search engines.

Third Mail:

It is Spectrum Health United Memorial Hospital, 605 S. Bower St., Greenville, MI 48838

I am sitting here bawling with the right side of my brain feeling like it is going to explode. It's 4am, can not sleep for anything. I am scared as hell, just don't know what else to do from here.
Can I demand a heparin drip? Do I drive myself back up and refuse to leave until they get it back up? These people have me terrified, but it is the only hospital around for less than over an hour drive.
.Yeah, because they had just given me phenergan with codeine for brohchitis. Duh! Some day I hope to live close to a hospital that knows what they are doing, listens to patients, and does what works. Until then, I guess I am just going to have to bombard them if this seizure thing happens again until they get it!

What a nightmare, at least the migraine has subsided now. The seizures are a worry though, I hope they never come back with that hospital treating (or should that be not treating) you.

My final reply was to contact  the Patient Relations Department, Spectrum Health on 616.391.2624  to try to work out what has gone wrong in the hospital, and how they intend to improve their knowledge of APLS for future patients. I doubt if this lady will have any better luck next time she visits the hospital as once complaints are closed all the good intentions to improve will get lost in the normal daily routines and they will never improve until someone dies from APLS in their care.



Page forms part of www.apls.tk, the information site on ANTIPHOSPHOLIPID SYNDROME (APS or ANTIPHOSPHOLIPID SYNDROME (APLS))


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