ER Doc Just Doesn't Get It

foreverhopeful

I have lymphedema primarily in my hand and it goes into my forearm. 

 A little history...  Not so long ago, my whole entire arm turned red, itched and started to swell.  When I went into urgent care, I found out I had hives.  My lymphedema arm took it to a new level.  I was glad that it wasn't an infection.  I was given steroids and it cleared it up. 

Fast forward to last week. My elbow to my shoulder swelled, hurt, was slightly red and very warm to the touch.  I also had tingling in my fingers.  Since I was going away for the weekend, I again went to urgent care, because something wasn't right.  The doctor there said he didn't think it was cellulitus, but wanted to rule out a blood clot.  I am on Tamoxifin and that is a side effect.  I was then sent to an ER for an ultrasound.  Thankfully it wasn't a blood clot, but what is it?  The ER doctor said I had a rash.   (Okay, so maybe lymphedema is taking the rash to a new level like it did the hives-my take)  I asked her why she thought my hand was tingling. Her response was that I would have to follow through with my oncologist about lymphedema, because you could see that swollen hand a mile away.  Really?  Didn't she realize my hand was actually having a good day. Didn't she realize that I had been dealing with lymphedema for more than a year.  Didn't she realize that even though I love my oncologist, that is not who I go to for lymphedema.   Didn't she hear me when I told her I have lymphedema and my hand is swollen,  but I am never swollen above the elbow and that is why I was there.  Sigh!  My arm is still swollen and I am just hoping it goes back to where it was before.. Thanks for listening.  I know you all will have sympathy about her comment about my poor hand:(  She just didn't get it - how frustrating!  I know you all will!

Binney4

Hopeful, I'm so sorry!

In my experience, the ER (or urgent care) is just plain dangerous. They don't get it, they don't know what to do about it, and they don't even know that they don't know. They say stupid things. (An example: I go to the ER for something not even LE-related, and I'm wearing a night sleeve on my arm to keep them from messing with it. The nurse keeps asking me over and over, "What's under there?" I keep telling him, "It's just my arm--I have LE." And finally after about half an hour, he says, "Well, what does it LOOK like?")

I trust the arm is better? No more hot-to-the-touch, no redness, no pain? As long as you have an all-clear about it not being an infection, you can wrap your arm (if you've been taught to do that), or hop on over to your LE therapist and let her help you "fix" it.

Be well! Let us know how you're doing,
Binney

kira66715

Just to make sure: we're sure this is NOT a cellulitis? Because increased swelling, pain, warm and red sure sounds like cellulitis.

If your arm is still swollen, and no physician with any clue about LE has evaluated it, do you think you  might need antibiotics?

I agree with Binney, that faced with a condition that a provider is ignorant about, they tend to pass the buck and not listen. 

I like my onc also, but I don't have her treat my LE--my LE therapist does, and my PCP writes the referrals. 

Please let us know how you're doing, and I sure wish we could come up with a short card for people to take to the ER. The Jobst LE booklet is good and scary. 

Kira

Kicks

Don't have anything to say that will help you - other than UC/ER Drs often don't have a clue and can be deadly. Last Aug. I slipped/tripped and broke 2 bones in my foot. Went to UC the next morning, Dr didn't think I had really done anything. - just soft tissue damage if anything but decided that I needed a blood check for GOUT and an Xray. Come on - I knew exactly when I slipped /tripped and had no pain before. She was very surprised when the Gout blood work came back negative. Before we got home, I had a call from orthopedics to come back as there were 2 bones broken. Actually a hospital ER almost killed my older son. Long story short - even though he was current on MMR he developed measles in the FL epidemic of 1991. His fever was over 104 with tylenol so took him to the closest hospital. We were there for about an hour and his temp was back down to 102 so they sent hime home. Did not take him home but to another hospital about 10 miles away. They were great - they cleared the ambulance enterance and had a Dr waiting when they got him to the isolation room. He should have been seizuring because of dehydration (Dr had to cut into a deep leg vein to get an IV running) and temp was back up. Had I taken him home he would not have survived the night and it was several days before we knew if he would. Oh his Dad was 1/2 the world away - it was Desert Storm.



Yes ER's can be DEADLY!



Hope your arm is doing better! Have you called your LE tech?

foreverhopeful

Hey all,

Thank you for your support - I like Binney's comment that they don't even know that they don't know about "it".  It is mind boggling to me.  That is a great idea about Kira about a card to take to the ER with us.  Anyhow, I have been in to see my therapist and she was concerned too, but my arm is doing a little better. She is helping me fix it and I hope that it will get back to where it was before all of this.  I do have it wrapped.   It is now about a cm up from my normal (I don't know what it was at the worst of all of this.)  She thinks it is just an unexplainable fluctuation that just happens, maybe some scar tissue that we need to stretch.  We could all probably write a book about the craziest/rudest things said to us in the ER.