Chat Highlights
Living with Glaucoma
June 13, 2001

Norma Devine, Editor

On Wednesday, June 13, 2001, Dr. Rick Wilson, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Living with Glaucoma." 

Moderator:  Dr. Wilson, our topic tonight is Living with Glaucoma.

Dr. Rick Wilson:  You all are the experts on that.  Everyone please chime in and give advice about what works best for you.

P:  Asking questions, and not stopping until I get an answer I understand!

Moderator:  Stopping to see the roses.

P:  And smell them.  

P:  When the eyes are stable,  it is easy to live with glaucoma.  When they are out of control, so am I.

P:  Sometimes crying works for me.  

P:  I thought we discussed how crying can raise IOP (intraocular pressure).

Dr. Rick Wilson:  I'm not sure if crying when you feel sad affects your pressure. Sobbing does elevate it somewhat, but only for the short term.  The emotional release you get, however, should help to lower it afterwards. 

P:  My glaucoma doctor may be about to discharge me for sending him abstracts, opinions, and ideas in my feeble attempt to collect knowledge for both of us.  Actually that was my deal when I signed on with him.  My approach is always analytical and requires dialog.

P:  I'm the same way. I want every detail.  Sometimes I have to keep prodding.

Dr. Rick Wilson:  That is important.  If you make a verbal contract with your doctor up front, so he knows that you want to be told everything and will question till you understand, I think the doctor will be more responsive later than if you suddenly start making demands on his time when he feels guilty about keeping patients waiting.  

P:  Good point, doctor.  But I get upset when I hear other glaucoma patients saying their doctor didn't explain things to them.  I say, then get an answer you can understand. 

Dr. Rick Wilson:  I agree.  I would like family there for important discussions.  It is too easy for the patient to focus in on one point and hear nothing thereafter.

P:   I feel so fortunate that I have a glaucoma specialist who emphasizes patient education.

P:  My doctor is wonderful, and I get the added benefit of the Wills doctors who come here.  I am lucky!

Moderator:  Dr. Rick, do most of your patients come with someone or do they come alone to your office?

Dr. Rick Wilson:  Probably 30 to 40% bring someone.  

Moderator:  I try to take someone with me anytime I see the eye doctor, even if it is a routine visit.  Sometimes two people hear two different things.

P:  Can patients who are upset really understand all the doctor is telling them?  When I was diagnosed, part of my mind shut down when I heard "glaucoma."

P:   I take a notebook now and try to take notes.

P:  I hate to burden my family.

P:  I am very disciplined about taking my drops (Alphagan twice a day and Xalatan once a day).  But sometimes it seems so futile.  Nothing seems to have any effect.

Dr. Rick Wilson:  I spoke about that in a lecture I gave Friday in San Francisco.  It is hard to remember to take medications when you won't see the results of not taking them for months to years.  My wife would do terribly with that scenario. She takes medicine as long as she feels terrible. As soon as she feels better, she forgets to take the medication. 

P:  One thing that I have decided about having glaucoma is to make sure that I am doing everything I want to do NOW.  Travel, grandkids, projects, etc. Don't wait!  If  I retain my sight, then I can do more; if I lose my sight, I will have those images.

P:  When I was first diagnosed, I thought for sure I would go blind.  But over the years, as Dr. Rick said, most patients do not. 

Dr. Rick Wilson:  Keep a positive attitude, because the majority of vision lost to glaucoma occurs before the patients see the eye doctor, and are diagnosed and treated. Once treated, most patients suffer only slow deterioration over long periods and die with close to the vision they had at the time of diagnosis. Exercise, eat right, stop smoking, lose weight and keep yourself in as good health as possible. It makes a huge difference in the long-term prognosis, especially in patients as they age.

P:   Right you are, Dr. Rick.  Most of my loss happened before I was diagnosed.

P:  Every morning that I wake up and can see, I give thanks and go happily about my day.

P:  After two trabeculectomies, I've developed a better understanding of how difficult it is for visually impaired persons.  My consolation has been that my vision would return.

P:  Isn't the written word a better way to communicate than verbally? 

Dr. Rick Wilson:  A well-written brochure can be taken home and re-read till understood and can contain more information than just a talk with the doctor.

P:  My husband read all the literature that I've read about this disease and wants to learn more,  just like me.

P:  I think that for me, after many years,  my expectations are not as high.  I just want to keep seeing.

P:  I can't imagine that patients who are educated about intraocular pressure would stop taking their glaucoma eye drops.  Are there really a lot of patients who do not take their drops?

Dr. Rick Wilson:  The number of people who turn in a prescription for medications and never pick them up is mind-boggling.  About twenty-five percent of patients stop taking their medications during the first year of treatment. 

P:  I understand patients not picking them up.  They are too freaked out to face it.  But to stop and risk further vision loss . . . . Whew!  Talk about being ungrateful for the medications available.

P:  With the rising cost of medications, I can understand why they might stop taking their medication. 

Moderator:  Yes, the cost of the medications is crazy.  I hope something is done soon about the rising costs.

P:  Luckily, my big bottle of Trusopt is only $10 on my prescription plan.  And there are other prescription plans available without insurance.

P:  Dr. Rick, do you think some simply can't afford the medications, especially those who are on several medications and have no insurance? 

Dr. Rick Wilson:  Yes, probably a lot of people have to make choices about medication, heating, food and other necessities.

P:  I think one of the problems with patients not taking the medication is the lack of noticeable symptoms, like those those with hypertension.  They have no pain and feel no need to take medication.  

P:  Yes, I think people quit taking the medication because they do not feel sick.  I'm afraid I would be one of the 25% who don't take their medications if I had not found this chat group.

P:  I would have cut down on my food before I would have stopped my eye drops.

P:  One concern I have is that friends, trying to be supportive, keep asking "how are your eyes?"  But I find it boring and irritating to talk about "my condition," except with those who need the information.  How does everyone handle that?

P:  I tell everyone I am fine.  Stories get distorted.  

P:   I try to hide the extent of vision loss from my wife.  Then I get angry when she comments on something I should have seen, but didn't. 

P:  I talked about this disease at length with my grandfather.  He told me that life is not always about holding a good hand; life is about playing a bad hand well.  So that's what I do.  

Moderator:  He was right.  You have to play the cards you are dealt.

P:  Dr. Rick, what advice do you give your patients about living with glaucoma?

Dr. Rick Wilson:  In our practice back in the early '80s, about 35% of our patients at all stages of glaucoma  showed visual field progression over five years.  Most of those patients did not realize they had gotten worse till I told them.  I feel the numbers are better now, but still over 20% for five years.

P:  So, Dr. Rick, in other words, about 80% did NOT see progression over five years.

P:  To what do you attribute the drop in progression?

Dr. Rick Wilson:  Instead of  lowering pressures just into the normal range, we are now picking a target pressure that is our best educated guess at the level of IOP that will prevent further progression. This target IOP is lower than it used to be, and does seem to prevent further progression.

P:  I don't quite understand your percentages of  35 and 20.  Are  you referring to the loss of visual field or to patients who are non-compliant?

Dr. Rick Wilson:  I was speaking of visual field loss over a five-year period. The aim is not to die without any damage, but to die without any symptoms from glaucoma. 

P:  I've been on glaucoma medications for about four months.  Today my husband asked me how how long I would have to use the drops.   I just looked at him and said, "We'd  better do some reading together.  This is probably a lifetime commitment."

Moderator:  Good point.  That was a tough one for me to realize, too.

P:  I do a lot of armchair research. What bothers me is that I find some very promising stuff in the literature, which seems to die down after a few years.  I can't tell if that is because it didn't work, or because of other things, such as lack of funding.  That really bugs me!

P:  This site, the chat, the archives, and the Bionic Eye forum have been a great help in my education, especially the experience others here have had.  

P:  So true.  Patients' personal experience and questions on the Bionic Eye are enlightening. 

P:  So I've heard.  I'm on several email lists.  My husband is sitting with me now, reading everyone's comments with me.

P:  Dr. Rick,  this site, and those who contribute to it, have helped to reassure me that this mystery of glaucoma and the non-specific treatment regimes are the best that I can do.  It keeps me from lying awake at night thinking I should be trying some magic elixir.

Dr. Rick Wilson:  Thanks.  Comments like that keep us working on the website. Viv, Norma , Steve and other patients are starting to contribute to our online community and knowledge base.  Viv can let anyone who wants to help know if there are projects that need commitment. 

P:  After more then 30 years on drops, a detached retina, a couple of trabeculectomies in both eyes, needling, blood injections, Holmium laser, and cataracts removed from both eyes, I am now off drops because I followed my doctor's instructions.  I didn't fight it.  I am not out of the woods yet, as the pressure in the left eye has dropped to five. 

Dr. Rick Wilson:  Nice going.  But what a struggle!  Sorry, gang, but it's my son's birthday.  I got home late from work and my wife had already gone to a church meeting, so I'm in dutch as it is.  AND the 76's are on TV.  I hope you can hold the questions till next week. 

Moderator:   Thank you, Dr. Rick. Happy birthday to your son.  Good night.

Dr. Rick Wilson:  Thank you, and good night all.

End of chat highlights for June 13, 2001.

On June 20, Dr. Spaeth discussed "Glaucoma and the Young" in the Chat room. Click here for highlights of that meeting.

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