A card for AD

[cklovesflowers]

Do you carry a card for Autonomic Dysreflexia? and why is it important. My PT said this is important.

So, I will print out the card and put it in my wallet. but I am not sure why this is important, can anyone explain?

Is it for medical people in case of emergency?

Thanks, C

[EyesOfTexas]

The card can be good to give you something a little more official to provide to medical professionals. Doctors may not always be familiar with autonomic dysreflexia, and they might try to treat you incorrectly.

It also is something that you (or a friend, caregiver, family member) can gives to the doctors in case you're unable to explain it to them.

Long story short, yes, it is for medical professionals in case of emergency.

[SCI-Nurse]

Yes, it is strongly recommended that you carry a card that describes the diagnosis and treatment of AD if you are at risk. Very few physicians, nurses, or EMT staff have any knowledge of or education about autonomic dysreflexia. Were you provided with this education when you went through your acute rehab program? That is where most people get their cards.

You can also obtain cards from the Dana & Christopher Reeve Foundation, the Paralyzed Veterans of America, and the United Spinal Association. Strongly suggest you also download the clinical practice guidelines for healthcare professionals and the consumer version (for you) of this CPG. We have discussed this at length here in the past as well, and a card was posted here for use by our members.

From our site: http://sci.rutgers.edu/forum/showthr...217#post607217

Professional CPG: Acute Management of Autonomic Dysreflexia: http://www.pva.org/CMSPages/GetFile....1-c06f50aeba65

Consumer version of the CPG above: Autonomic Dysreflexia: What You Should Know: http://www.pva.org/CMSPages/GetFile....9-f002f88bd2c1

AD Wallet Card from DCRF: https://www.christopherreeve.org/liv...s/wallet-cards

AD Wallet Card from USA: http://www.spinalcord.org/resource-c...kb.page&id=248

(KLD)

[cklovesflowers]

Thank you,

Sort of, I was given a book/binder with all kinds of information in 2015, it was geared toward traumatic sci and long story short. I didn't understand that these things pertained to me. I didn't understand what was happening. I year ago I ended up in the ER. I am glad to know what happens and what to do. Presently, my new PT is providing all kinds of information I did not know.

My initial rehab (2015) focused on idea of "neuroplasticity" and function, but didn't educate on anything else. It was a hard time. My husband and I moved all the way across country to get the health care I needed. It is not their fault. I don't think they have the resources.

I will stay off my soap box.

I am happy to have access to the healthcare I do now. I am more stable physically than I have been. It has made all the difference. I was not doing well until we moved.

I am thankful that they had enough knowledge back then to treat me in the acute sense.

Thank you for the links. My PT gave me the Dana and Christopher Reeve Foundation resource.

[crags]

I would definitely keep one in my wallet case you get some sort of accident and are unconscious and personnel go through your wallet.

The other important thing is to always take a copy with you when you go to the emergency room, are going for ambulatory surgery or are going to be admitted. Make sure that the document becomes part of your chart and most importantly, that they have readily available the emergency meds needed to bring down your blood pressure should something happen, for instance, with your indwelling catheter, as is usually the case with myself.

Whenever I am in the hospital, my biggest daily fear is the clogging of the indwelling catheter, which I require, since as a quad with an augment, I cannot cath on the same basis and keep clean hands, since I cannot get to a sink every time. For some reason which no urologist has been able to explain as of yet, the catheter clogs up with either bowel mucus or possibly the folds of the augment on an empty bladder. Whatever the reason, it is a nightmare, since it happens every day, and the nurses need to flush and suck out the mucus at least once a day if I'm lucky. They typically try to flush it through the port and not open the closed system, as is protocol, but that does not allow for pulling out the thick mucus. To simply push it back out into the bladder just invites to clog again.

I even have to keep catheters handy to cath through the stoma to get down the volume, if the staff just sit on their hands while my blood pressure, usually about 85 systolic if I'm lucky, hits in excess of 160. To them, this may not seem extraordinarily problematic, but for us, it can be quite serious.

It clogs up so often that I have to take a catheter with me even when I leave the floor for tests, as you don't want to be caught on another floor, with strange personnel, in the middle of the test when you go hyperreflexic because of a clogged catheter.

[SCI-Nurse]

All good advice. Please keep a card with you at all times. It could be what saves your life.

ckf

[dpatrick]

I keep several 10 mg procardia capsules with me as well as my ad card, at all times..i've had AD and is no fun,thought my head was going to blow up my bp was sooo high,wonder i didnt die or have stroke...i've had sudafed n robitussion trigger ad..i only use alka seltzer now for colds.
the procardia brings your bp down,i've used 2 before..talk to your Dr. bout it,see if he will write a script for it.
good luck.

[gjnl]

I keep several 10 mg procardia capsules with me as well as my ad card, at all times..i've had AD and is no fun,thought my head was going to blow up my bp was sooo high,wonder i didnt die or have stroke...i've had sudafed n robitussion trigger ad..i only use alka seltzer now for colds.
the procardia brings your bp down,i've used 2 before..talk to your Dr. bout it,see if he will write a script for it.
good luck.

Nitro paste may be a safer emergency rescue medication for autonomic dysreflexia because it can be wiped off after the AD event passes. With procardia and other oral rescue medications, the drug stays active in the body for longer than it needs to.

[cerasaur]

I always carry nitropaste and two AD cards on me - one in my wallet with my ID, and one in a separate wallet where all of my insurance and medical information is. Very early on I had a pretty serious episode of AD due to not recognizing the more mild symptoms yet, and it is difficult to explain the extreme urgency I felt and the complete inability to communicate what was going on with me or what I needed - it's true, with your BP that high it feels like your head is about to literally explode at any second. I'm usually very good at being an advocate for my own health, which is important with an SCI, but when you're autonomic you just can't do that. Medical professionals are unfortunately not so educated on AD, even in hospitals that are major trauma centers; I've had nurses tell me that I have the resting heart rate of an athlete while I try to tell them that I do not, it means I'm starting to go autonomic. Giving them my card to read always helps.

[Scott C4/5]

What would really be handy is a Fitbit device that could measure your pulse and blood pressure, ring an alarm when the BP gets too high and provide the AD information to emergency people like medical alert bracelets do. Perhaps a QR code thing could pull up this info on their phone or tablet.