Seriously Docs...how do we get your attention???

From my experience working on an ambulance, here are some tips on the medication allergies you asked about...

1) They ask you WHY you are allergic because there are a bunch of people who "say" they are allergic when they just don't really like the side effects, for example, my son thinks he's allergic to spaghetti. He's not - he just doesn't like it. I am not allergic to Cipro, but if you give it to me you will be seeing whatever I ate within the last week very quickly. Good info to have.

2) If you are really, truly allergic and will have an anaphylactic reaction, your throat will quickly swell up and if they do not treat you very quickly they will have to cut a hole in your throat and put you on a ventilator. In that case, they have meds and tools that will counteract that reaction. They will absolutely plan to have them ready and waiting if they may be necessary. This is life threatening and they need to know this up-front.

3) A lot of people use the category "allergic" to entail a lot of different reactions. Such as becoming combative (Mike!). He's not going to have an anaphylactic allergic - he has a bad reaction - VERY bad. Feel free... VERY, VERY free to tell them that you get combative if given a medication! They will probably not give it to you considering the danger to themselves.

Getting them to understand about our surgeries is something different. Either me or my husband makes it very clear that I have a "FAKE BLADDER" that MUST be manually emptied. That seems to cut through the fog of medical terms. The medic alert bracelet never worked, so I stopped wearing it. I'm thinking a tattoo might be a good investment... a big one. Kinda like the big "NO" on the arm, but permanent. (Gee, won't that be sexy?) You never know when you might be brought into the ER unconcious from a car wreck and without someone to speak for you. If you have to cath and are not concious, they will NEVER suspect it. NEVER.

Concerning input/output from IV's, any nurse or doctor should understand that if it goes in, it must come out, but they don't always think about the "out" part immediately. All I can recommend for that is to make sure you have someone who can track this for you if you can't do it yourself. Make sure they understand this easy principle of in/out and have them keep tabs on the staff that does this. Have them ask how much fluids you got in surgery or in the last 4 hours, and that what's in the foley bag is pretty close. If it's not, you got issues and they need to fix them. The best thing you can do for yourself is to train someone you know will be there if you are in the hospital to care for YOUR NEEDS. They do not need to be medically inclined, just willing to question the nurses and doctors tactfully and cover your back when you are down.

Sorry to be so long winded, but what we have is not that common in the medical community. We need to be our own advocate and also to train someone else to advocate for us. When required, ganging up on them can be quite effective... just make sure you do it tactfully. WE know what's going on and what to do and need to both educate our nurses/doctors and insist on specific procedures when necessary. WE ARE THE EXPERTS. An ER doc or endocrinologist or even a regular urologist has no clue about our needs. Worst case, do what you can until the next shift comes in and start over with the new staff. They usually work either 7-7, 7a-3p, 3p-11p, and 11p-7a...

OK, that's my advice for what it's worth. Good luck!

Christine
(been to several ER's since RC)

maybe someone should do a trial with a person hooked up to a IV over 2 to 4 hours and let that person cath when they feel full...i know with my Indiana i can tell. Problem is they don't know how much the output should be with an IV in. There is a new devise out there to measure what is in the bladder but it only works on real bladders. I wrote the company and asked them to try it on neo's and Indianas.
www.seekwellness.com/incontinence/using_the_bladderscan.htm
Should we all write them ?
Pat

...and WHY is it that nurses always want to ask what happens if you take something on the allergy sheet?

When I got my neo, I had a nurse ask about phenergan and I said I couldn't take it. (My wife had told me not to).

The nurse decided to give me a low dose of it anyway. That night I swore that the night nurse (male) was a centaur. I also pulled out all my tubes and wound up naked.

Now, I list phenergan as an allergy but the nurses still ask.

When my foley got clogged, my doc just had them pull it and bring me a bunch of red rubber straight catheters. I just catheterized myself and then used condom catheters at night to avoid the problem altogether.

After IVs, the output goes WAY up and you don't want to be clogged up long. My first straight cath after being clogged was 1000cc and that ticked me off because I had been making progress getting my neo to shrink back down after being at 800cc.

I think I'd rather cath myself than have the nurses do it anyway but that doesn't work when you're under general anesthesia. If I ever have to have surgery again, there is going to be a LOT of discussion about this issue before I go in and I'm going to insist on meeting the person who will be responsible for keeping an eye on the output. I want the name of the person who is going to be accountable for it.

Mike

great idea sara anne assuming they can read! I'm pretty sure they can ...they just don't look at it. Even my surgeon sent me home with a script for vicodin which is on my allergy report. pat

Pat,
I'm sorry that happened to you....I recall it was one of your biggest concerns prior to going into surgery but I thought surely all would be just fine with you, knowing all the precautions you would take. Unbelievable! And yet I do believe it. I guess I'm lucky that my next surgery is for bladder stones; kinda tough for them to ignore the bladder when they are working on it. I hope.