Took DH to the ER- long vent!
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| Fri, 11-17-2006 - 10:18pm |
DH's MS exacerbation has been getting worse all week. He could barely walk today, feeling sick and disoriented all the time without relief; even starting to develop a chronic headache from it too.
We know from experience that this type of escalation with a new symptom is really bad news and needed to be treated with steroids (which is the only treatment at this time). It made me so mad, because DH was calling his neurologists office all week and the nurse was stringing him along, not calling him back and DH never got to talk with his doctor directly. Finally this morning, I told him to call and assert that he needed to get in today to get checked out...he ended up leaving a message.
The nurse happened to call me back and was blowing us off, she said there were no appointments available until Dec. or Jan.! I was ready to lose it! Nothing makes me more incredibly angry, then to be watching my DH disintegrate in front of me and the doctors are too busy to see him! Plus there seems to be this attitude that since MS is basically incurable that patients should just suck it up and there's no need to use the treatments available.
I knew if I expressed myself to the nurse, that what I had to say would be really rude...so I just said "Okay I'll take him to the ER, click". This was about 9AM, so we had to drop DD off at daycare, I emailed all my teachers about missing class (I feel guilty about worrying so much about class when DH is in such bad shape, but last set of exams are all next week, followed by finals and it's the worst time to be missing class.)
So we drove down to the University hospital (where DH's neurologist is) about 35 miles away and went into the ER. I was just shaking with anger and anxiety, couldn't stop crying most of the way and felt guilty about how that was upsetting DH.
Fortunately the ER was not too busy when we arrived and DH got right in, but still took an hour to get checked in; the basic problem explained. An hour later, a really nice PA examined him, was gratifyingly outraged that neurology has ignored all his phone calls, sent him down for an MRI and sent a referral up to neurology.
So down to the MRI, DH got the MRI then got left in the MRI waiting room for nearly two hours because they "forgot" him when the ER got super busy. So back to the ER and after another half hour, these two neurology residents show up and are total jerks! The first one gives this little speech about DH has to expect all these problems, big and little because he'll have them the rest of his life. (no kidding, like we didn't know that)It was like he was chiding us for coming in and implying that DH was being a wimp or something. So he goes off to "consult" and comes back with this other resident, who starts grilling DH about exactly when his symptoms started, which happened to be shortly after his last appointment with his neurologist to discuss starting on copaxane shots (supposed to slow the progression). He was actually smiling snottily and clearly implying that because DH was not feeling bad at that visit, that it was psychological or malingering or something.
I had calmed down a bit when we first got to the ER and the PA was so nice...now I was really gearing up again and I just wanted to lash out and wipe the smug, ignorant smiles right off those judgemental, insensitive, self-important idiots! By this time it was around 3PM and DH was in pain and just shutting down, so he was barely talking to these "doctors". After watching DH barely totter a few steps, the one made some remark about well if DH tried to run down the hall would he fall on his face and DH told him yes he would. Then there was this pause like the resident was daring DH to do it. I was about to go ballistic on him if he had the nerve to actually say it. After the two of them left, I was shaking and mad enough to spit nails.
The nurse came in and asked what they had said. I told her basically not much that they had gone to "consult" about whether to treat DH with the steroids or not, but expressed that I really felt very strongly that DH needed the treatment.
A half hour later, this wonderfully cheerful staff neurologist (one that I had not met before) came in, residents in tow. He talked to DH briefly, did a few basic reflex, muscle and vision tests, then asked him to walk a few steps. This doctor was talking and treating DH like a human being. He was also lecturing the residents about various reactions of DH's that were showing neurological indicators of something wrong and confidently said that yes DH clearly was suffering from this problem, was incapacitated by it and needed to be admitted right away for the treatment. He also confirmed that DH's MRI had new developments that could be causing this. Thank-you Doctor!
It only took 6 hours to determine what I had told them all when we came in. DH was admitted and will be hospitalized at least through Monday afternoon to complete the treatment.
I had to leave and pick-up DD, while DH was still waiting in the ER. Have her tucked in and got a call from DH that he's in a room and four of our friends came by to visit him.
So, sorry for the major vent...but this day really sucked and I'm so glad I got through it without tearing into those jerk residents (verbally or otherwise). I'm still a little shaky and prone to get weepy too.
I really need some sleep.
Thanks if you managed to read this whole saga.
Have a goodnight,
Dee

I am so sorry about all you're going through. I have a friend (not a close one) who has MS and is luckily in remission right now. But it took her several years to get stable and there is always the fear that it will get worse.
Can the MS Society help at all? It sounds like patient advocacy mighgt help. It is not right the way you are treated. I am glad the chief neurologist came down and put those residents in their place.
Big hugs to you all.
Jan & Emily,
Thanks, at least DH is being treated now. DD and I have had a quiet morning and heading over to see our guy. So I'm feeling better.
Sorry about dumping all that here. I was pretty wound up last night and it did help to get it all out.
Thanks again for the support!
Yours truly,
Dee
Dee sorry to hear of your troubles with the doctors. I hate when doctors and others in the medicial profession don't seem to want to listen to their patients. After all we know our bodies better then anyone. I am glad to hear they are now taking him seriously and have admitted him to the hospital. My prayers are with you and yours.
Keitha
Hi Keitha,
Thanks, I really appreciate the support.
DD and I spent a couple hours today visiting and the treatment is working. DH is more depressed though than I've seen him in a long time. We may be able to bring him home tomorrow night, so have our fingers crossed.
Hope you are having a good day,
Smiles,
Dee
Dee glad to hear the treatment is working. Hoping your DH will be coming home soon, it's stressful when those we love are spending time in the hospital. Sorry to hear of his depression that's a hard one for everyone I know because I've fallen into that category myself many times.
Keitha
(((Dee))) I was so sorry to read about last night :(
Sheri Ann