First thanks for all your great posts, and apologies I've been "lurking" too much recently and not posting.
One minor issue just come up for me, I'd be interested what people's views are:
The very large, and now global company I work for requires you to use a pass card to get in and out the buildings etc. these days.
There is now a new facility whereby on the card you can have medical alerts added. This is to cover for the case of e.g. company first aiders e.g. if they delivered you unconscious to hospital, and you were unable to explain yourselves (Apologies for extreme example - no intention to cause alarm). One good example the company gave was for those with heart issues etc. on blood thinning Warfarin.
I think those on FCR wear bracelets with warnings of no-live vaccines etc.
In my case I'm still (just) on "Watch and Wait" / "Active Management and Care" (however best that is put), so I'm not sure what if anything I'd put on the card, except perhaps "CLL". I think "no-live vaccines" still applies. If not familiar, read the section on vaccinations in:
Now to get back to considering the alert tags, I'm not on any regular prescription medication yet - except for reading all your posts on HU which is by far the best medicine of all.
Answers for different stages of CLL and treatments on what best to put on the tag would all be good.
Many thanks,
Ernie
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Ernest2
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i wear a medical alert bracelet 24/7 and i am on watch and wait. Dx jan 2013.
My bracelet states
" Beware i have CLL" on the front and
"Chronic Lymphocytic Leukemia" on the reverse.
I injured my eye and went to A&E, they washed my eye out and put a cream into it. Only, a few hours later when i could see again did i read the leaflet to discover that the cream should not be used on anyone with a blood disorder or suppressed immune system.
After a frantic call to my hematologist i was told not to continue with the cream and the one dose would not affect me.
He suggested wearing a bracelet to alert medical staff to check before they treat.
Never go anywhere without it.
I also made myself a credit card size information card for my purse which states my conditions, CLL, Spondolytis, high blood pressure (+medication) and depression (+medication) and the phone number of my hematology department.
There is a very important case in CLL that should be mentioned in regard to medical alerts. If you have ever been treated with FLUDARABINE (FCR, FR, PCR) you should carry a 'Irradiated Blood ONLY Card...
OMG!!! This is such a useful post! I didn't know about this. I finished FCR about 2 years ago and I was about to destroy my 'Irradiated Blood ONLY Card thinking it was no longer necessary.... Thank you, Cllcanada
I've often thought about these bracelets, i have both CLL & IBD (Crohn's) along with taking a range of medicines, i wonder about making people aware of my conditions.
The Medic Alert type tag or braclet is probably the best... certainly for first responders...
I carry a USB micro flash drive in my wallet with my doctor's names and contact numbers and a brief medical history, and I noticed recently that a company was a 'Dog Tag' with a drive imbedded...
I have been told however, that some hospitals are advised not to read USB drives on hospital computers due to security concerns... so I don't know if carrying electronic information is of any benefit really...
So it is probably best to carry written information and perhaps electronically, I also have an unlocked phone with all my contact numbers... primarily for emergencies.
I wear a medic alert wrist band. I thought that was best, looked at other options, watch or necklace, decided medics more likely to look at my wrist than neck. My wife's idea - no more vacations until you wear one! Soon got my attention.
For the ID tag, why not. Is it physically on the iD tag or is it just written on the chip?
Considering the 8 hrs you spend a day at work wearing the ID vs the 16 hrs you spend at not wearing the ID, If you are concerned about it I would suggest wearing a separate ID tag.
I've found a couple of unsupported "statistics" on line about whether medical staff look for medical ID and where on the body. Generally, the highest percentage look for ID on the wrist, lower on the neck and lowest in your wallet.
Have any of you seen these medical alert bracelets. They can be engraved on the front only and can carry all the info you need. It comes with one engravable link and others can be added as and when
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