Emergencies and Hospital Stays

[mary kenny badami]

These topics were mentioned in this forum under the title "Workshops 2/18/06," which you can locate through the following link:
http://www.dryeyezone.com/talk/showthread.php?t=1143

I think they deserve a separate thread of their own, so here goes.
It is based on my notes from last month’s DEZ conference “Wellness Workshops.”
Questions came from audience members.
Answers came from the various docs present and other participants.
Reminder: this represents patient-to-patient suggestions and interpretations, not medical diagnosis or advice.

Question about preparing for emergencies:
What if I collapse somewhere and am unable to explain how fragile my eyes are?
While “they” are tending to my other conditions, which will be caring for the health of my eyes?

Answers:
1. Carry a sheet of paper in your wallet listing all your medications and stating that you have a dry eye condition.
It should state that if you are in an emergency, medical personnel should “CONSULT AN OPHTHALMOLOGIST” regarding your care.
2. Carry a sheet of paper in your wallet listing an emergency contact person.
He or she should be fully aware of your total list of medications and your eye care needs.
3. Consider signing up for a Medic Alert bracelet.
Suggested language: “SEVERE EYE DISEASE.” (Presumably, that might get somebody’s attention!)


Question about preparing for a hospital stay:
Given that I have dry eyes which are currently under control – or sadly not –
what should I do when preparing to go to the hospital for an operation where I’ll be under anesthesia?

Answers:
1. Type up a report and bring it to each and every one of your pre-op appointments. The sheet should state clearly that you have dry eyes/ dry eye syndrome/ ocular surface disease / severe eye disease < pick the phrase of your choice > – along with other information about allergies, medical conditions, and medications usually taken. Ask that it be added to your medical file at each stage of the preparation for your operation.
2. Write on that sheet – and verbally request each person whom you meet – to tell the anesthesiologist that extra care is important for use of eye ointment and eye taping while you are sedated. Medical language hint: say that this extra care is “indicated”; that’s a word that docs take seriously.
3. Give copies of that sheet to any adult family member or caregiver who will accompany you to a hospital, or who has your power of attorney, or is listed as your emergency contact person.
4. Even though conventional pre-op information sheets typically say that water (hydration) is not allowed during a certain time, insist on discussing with the referring doctor, the surgeon, and the anesthesiologist whether you might be allowed to drink water or suck on ice chips the night before, the morning of, and shortly after your operation. Explain that hydration is essential (er. . . . “indicated”) for the health of your eyes.
5. “Take your stuff with you” – that is, bring every eye drop, gel, or ointment which you usually use, and continue to use them during the pre-op time while you are still conscious. Depending on your situation, ask that they be entrusted to whoever is accompanying you or will be waiting for you in the recovery area . . . or ask that they be given to a nurse and made part of any bedside materials returned to you immediately after the operation (such as eyeglasses, hearing aids, other medications, etc.).
6. If your situation is particularly severe, consult your docs to ask whether you may be admitted the night before to receive intravenous hydration. (Thanks to Melody from the Sjogren’s Syndrome Foundation for this tip about pre-op IV hydration).

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That's my best take on what I heard at the conference.
I hope that you-all will feel free to add to, correct, or offer additional suggestions on these topics!

mary

[Gaye]

emergencies and hospital stays

Thanks so much for the information and suggestions. This is something I worry about all the time, because even my husband doesn't quite get how serious dry eye can be.

[mary kenny badami]

I'm bringing to the top a post from two years ago concerning recommendations for dry eye sufferers -- how to deal with an emergency or plan for a hospital stay. For readers new to this forum (or those with short memories), let me recap: Rebecca Petris and the Dry Eye Zone sponsored a conference in Tampa, Florida, two years ago. Guest presenters included three prestigious eye doctors, plus Dr. Frank Holly, and several patients, including those affiliated with a local Sjogren's Syndrome support group.

This advice proved valuable to me twice in the last two years when I was hospitalized for (non-eye-related) procedures which required anesthesia.

The only update I would add to what was previously said is that those who use medications which require refrigeration (such as autologous serum drops) will also need to make those expectations clear.

Mind you, doing everything right according to these recommendations did not help one of our members during her recent traumatic hospital stay . . . but hoping that hers might have been a nasty exception rather than the rule, I wanted to remind us all that it is important to be as pro-active as possible, in helping our medical providers to help us.

[NYer]

That's an excellent post, Mary. Thank you.

[mary kenny badami]

I'm "popping to the top" this thread for "fed up kate" and others who may be seeking advice about how to anticipate emergencies and hospitalizations.

[ringo]

Thank you so much Mary, you have provided very important information.

I went through two complete anaesthesias without even mentioning the dry eyes to the doctors, as I did not foresee the problems the anaesthesia will cause to my eyes, I was in extreme distress from the situation that required operation, and was also struck with grief.

After the operation, my eyes were a total mess; they were horribly dry. In adition to that I was given some intravenous strong painkillers, which increase the dryness; the hospital was also strongly ventilated, so I had a hellish nightmare there overall.

Had I taken the precautions you mention, I would have prevented a lot of suffering.