Mattthew 6:33 " But first be concerned about God's kingdom and his righteousness, and all of these things will be provided for you as well. "
My life with VKH started fall of 2007, the weather cold and allergy season at its full force in San Antonio, Texas. Having had just turned 40 the following summer, I thought life just begun, yet, for me, I feel it went downhill. I work as a nurse and that day I was working the same hospital as my wife. That day, I was floated in ICU where she works. I have two patients that night one was a 3rd day post CABG which was stable and young gentleman who had a motor vehicle accident on a ventilator, septic and was getting aggitated so he was on propofol. Earlier that night he was also hypotensive because of his sepsis so I having a fun night playng with levofed. The shift was almost over, his blood pressure is already stable and I was just finishing up by charting my vital signs on my nurses notes (we were transitioning from paper charting to computer) I was sitting in between my two patients rooms so I was looking at the monitors. While looking at monitor to my right I have this extreme headache and my eye started getting blurry. I turned to my left to look at the monitor and just like that My eyesight was gone for few minutes. I was so scared so I told my charge right away since the nurses station was just at my back, "louise (not his real name) call my wife you guys have to split this patient. I think im having a stroke.". Louise was not just a co worker he was also a friend got report right away from my patient while my wife was finishing up my charting. In a few minutes, I was in ER for a stoke workout CT scan and lab works was done, the result? negative. I walked back to the unit and finished my shift.
To give you an idea of what this disease is Vogt-Koyanagi-Harada disease, aka VKH, is an inflammatory condition that affects both eyes, as well as the inner ear, skin, hair, and coverings of the brain. Certain groups of individuals appear to be predisposed to the development of VKH, such as Asians (including East and Southeast Asians and Asian Indians), Middle Easterners, Native Americans, and Hispanics. A common ancestry among these groups is believed to exist, with groups now living in the New World having arrived after crossing a land bridge across the Bering Strait. Individuals of Caucasian and African heritage may also develop VKH, though much less commonly. VKH has been known for over 1000 years. The name of the condition comes from three physicians who described the different phases of the condition, though at that time it was not realized that the features described were part of the same condition. Later reports brought this condition together under the name of Vogt-Koyanagi-Harada disease.
Few months pass, I was driving again to pick up some groceries when I had another episode of blurred vision. I immediately pulled over to the nearest gas station thinking my eyesight would completely shut down again like what happened the first time. waited for a few minutes and my eyesight was back to normal.I decided to go back home in tears,frightened that my eye would shut down.Upset and depressed when I arrived from home,my wife approached me. "What's going on?" so I told her what happened. She then went went to our room while I sat down and digest what just happened,few minutes later she was out dressed and told me to go with her to the optometrist. For that,I was fitted for a new prescription glasses the doctor even offered to be checked for bifocals but I declined. At first I tought it was just the glasses but as weeks passed my eyesight progressively started getting blurry. In a few months I was grocery shopping for doctors that would give me an answer why im loosing my eyesight until one day, this chinese optometrist asked me are you diabetic? I answered no Im not. She told be there is something more going on systemic that is causing this problem, she recommended seeing an ophthalmologist as soon as possible.
“VKH is usually severe panuveitis with an acute onset,” said Janet L. Davis, MD, an associate professor of ophthalmology at the Bascom Palmer Eye Institute in Miami. The disease “affects both eyes and can be seen in any age group.” Patients often present with exudative retinal detachments. “There is often a drastic and rapid reduction of vision in both eyes, down to the level of counting fingers,” Dr. Davis said. However, patients may have a premonition of the disease with some anterior segment inflammatory signs, headache, pain and light sensitivity. “But often within a week or two, the vision will decrease dramatically because of inflammation in the posterior segment,” she said.
After a week, I found my doctor and my answer. He immediately identified the problem as VKH unfortunately since this was a rare disease not all knows the actual treatment. I was started on prednisone eyedrop every hour and was sent to a rheumatoid specialist and prescribed me with a vey high dose of prednisone . I started with 80mg for a week and weekly tapered down by 20mg and was maintained with 5mg daily for the next few months on top of the eyedrops. At first it worked, the blurry vision was gone my eyes were not red and live happily ever after... "NOT!!!!". I blew up from a smart car to a SUV, quite to an angry bird. I guess I did not read the fine print of taking prednisone . I am becoming pre diabetic, my hypertension was from controlled to stroke waiting to happened, depressed, angry and having a risk of being banned from furr's cafeteria. After few visits from my rheumatoid doctor, I told him I cant tolerate the prednisone anymore. So he prescribed methotrexate to be taken every week and the side effects are horrible. Remember the phrase all men are created equal, I tell you not with methotrexate. I felt like I was hit by a car, I feel weak and nauseated, I know now how chemo patient feels after their treatment.To make my situation worst I was working on the day my doctor started me on this medication. Luckily me charge nurse was kind enough to give me some slack by sending me home after passing my medications which I barely made. I know I need to take this medication to avoid another flare up so the next time I took it I made sure I was not working. Fall season again, my eyes started getting red and blurry. Scared, depressed and frustrated I went back to my eye doctor and end up taking prednisone eye drops every hour again. My problem was he did not give me instruction when to stop the eye drops instead I got probably 6 refills of the eye drops. I called my eye doctor's office and told the nurse my concern, she replied "I'll you call back with an answer.". I live a busy life so few hours become few days until few weeks later remembered the call, this time my vision was not just blurry Im having difficulty seeing gray, red and green. I asked for another doctors visit and got a new diagnosis Cataracts on my left eye.
A cataract is a clouding of the normally clear lens of your eye. For people who have cataracts, seeing through cloudy lenses is a bit like looking through a frosty or fogged-up window. Clouded vision caused by cataracts can make it more difficult to read, drive a car (especially at night) or see the expression on a friend's face. Most cataracts develop slowly and don't disturb your eyesight early on. But with time, cataracts will eventually interfere with your vision. At first, stronger lighting and eyeglasses can help you deal with cataracts. But if impaired vision interferes with your usual activities, you might need
cataract surgery. Fortunately, cataract surgery is generally a safe, effective procedure.
VKH... Cataracts... I feel like its getting better and better, my methotrexate slows me down weekly,Blurry vision, color blind, altered depth perception and to top that I have to now go near the monitor to chart my nurses notes. Believe me this experience was not fun especially if you have a co workers that is obnoxious and condicending. Still this did not stop me, I was working harder than before since I have to make sure I do everything as perfect as I did when I have my eyesight. For this I learned how to start an IV without looking at the vain, I feel it. I scan my medication twice before giving medication, so my routine med pass that was suppose to be few minutes becomes hours and so does charting. I guess my faith and the confidence in my abilities kept me from doing my job right. My only obstacle was driving to work. It scares me since I cant see the white lines on the road and to make it worst when a car pass by with their headlights on high beam or those bright HID headlights I slow down more since my eye would temporarily tries to readjust. I remember one of my doctors visit, the tech told me "My god how do you drive" I replied "I take the same route every day" I learned every turn and every obstacle that I need to slow down. So I asked my doctor if this problem is corrected, my doctor replied yes, but it needs to be the right time before he does the cataract surgery. At first I was ok with it read some article about it which looks promising until I found some youtube video on how the procedure was done. Hell no!!!! my anxiety level was high, Im OK i can just live with cataract. Then on the next visit my doctor finally suggested the surgery needs to be done. He explained to me the procedure and I guess with my faith and trust with this doctor I said fine I'll do the surgery even though at the back of my mind I still remember how it it done, darn youtube.
Come surgery day, I have my wife brought me to the surgicenter, that time I felt Im the only young person having this procedure. I was so scared that when my nurse started my IV i was shaking. She said "its OK we've done this a lot of time." I smiled but deep inside me "yeah right its not your eye who's being done today.". Nurse pushed an IV sedation next thing I know my wife was beside me and I have the patch in my eye.. Is it over?my wife just repld just go to sleep I'll wake you up when they give me the discharge instructions. It was not ad after all that night I took the patch out and started my eye drops next day I could see much better, the wonders of cataract surgery. I was doing fe , my left eye can see better but Im still having redness in my eye. I did not take a while before my other eye had cataracts too. to make my story short I had another surgery for my right eye. My color blindness was corrected, my depth perception was corrected, my eyesight is now restored about 70% and lived happily every after... NOT!!! I still cant see the white lines on the road clearly most especially at night, my eyes would still have redness then few months pass,my left eye started getting blurry. Puzzled, depressed, tired and again frustrated, I was one sunday in church praying " Lord,what am I going to do now. I want to serve you more but I dont have the right tool to do it." next day I called the doctor's office and the secretary said my doctor is on vacation and but I can be see by another doctor. What else can go wrong, well at that point I dont have anything to loose so I agreed. Meeting this other doctor after years of treatment from my primary opthalmologist felt awkward. I dont know what to expect. He sat down andlooked at my chart from my past treatment. at first he started asking questions why I was taking all this medsa do why I had the procedure. He then looked at my eyes and explained to me that the membrane that supports my lens was causing the problem
When the cataract is removed, your surgeon makes every attempt to maintain the integrity of the lens capsule, and normally your vision after cataract surgery should be very clear. However, in about 20 percent of patients, the posterior portion of the capsule becomes hazy some time during cataract surgery recovery or even months later, causing PCO. Posterior capsule opacification occurs because lens epithelial cells remaining after cataract surgery have grown on the capsule. In some cases, if the condition progresses significantly, your vision may be worse than it was before cataract surgery.
He then told me he will do a procedure that will clear this up.Procedure? taking to myself thinking "I just had 4 surgery for my eye and now Im having another procedure?" well before I could say something this doctor explained to my what he was going to do. he said its just a laser procedure 10 seconds tops and done.
Fortunately, a YAG laser can treat posterior capsule opacity safely, effectively and painlessly. This procedure, known as YAG laser capsulotomy, often can be performed in your doctor's office.
YAG laser capsulotomy involves just a few simple steps:
procedure, however, call your eye doctor immediately if vision worsens or fails
to improve.
He also recommended stopping some of my medication except the ones for my hypertension and cholesterol. few days later the procedure was done and eventually cleared my visoin. He also suggested using a goggle to protect my eyes. Its been almost a year now and fall is here again so far I havent had any flare ups yet.
Update:
January 8 2016 its been years now that my VKH has died down. Yes, I cant believe it would happened. My key was to protect your eyes as much as you can by making sure you wash you hand before handling your eyedrops, eat more fruits and vitamines especially with lutien (vitamines for the eyes), on allergy seasons if you cant prevent being exposed to allergens like mowing the lawn or vacuming the floow without hepa filter use a full safety goggle that covers the eye. it minimize any allergens that could trigger your flare up. Dont wait to go to the doctor to ask for steroidal eyedrops. lastly, always not to forget to pray.
To give you an idea of what this disease is Vogt-Koyanagi-Harada disease, aka VKH, is an inflammatory condition that affects both eyes, as well as the inner ear, skin, hair, and coverings of the brain. Certain groups of individuals appear to be predisposed to the development of VKH, such as Asians (including East and Southeast Asians and Asian Indians), Middle Easterners, Native Americans, and Hispanics. A common ancestry among these groups is believed to exist, with groups now living in the New World having arrived after crossing a land bridge across the Bering Strait. Individuals of Caucasian and African heritage may also develop VKH, though much less commonly. VKH has been known for over 1000 years. The name of the condition comes from three physicians who described the different phases of the condition, though at that time it was not realized that the features described were part of the same condition. Later reports brought this condition together under the name of Vogt-Koyanagi-Harada disease.
Few months pass, I was driving again to pick up some groceries when I had another episode of blurred vision. I immediately pulled over to the nearest gas station thinking my eyesight would completely shut down again like what happened the first time. waited for a few minutes and my eyesight was back to normal.I decided to go back home in tears,frightened that my eye would shut down.Upset and depressed when I arrived from home,my wife approached me. "What's going on?" so I told her what happened. She then went went to our room while I sat down and digest what just happened,few minutes later she was out dressed and told me to go with her to the optometrist. For that,I was fitted for a new prescription glasses the doctor even offered to be checked for bifocals but I declined. At first I tought it was just the glasses but as weeks passed my eyesight progressively started getting blurry. In a few months I was grocery shopping for doctors that would give me an answer why im loosing my eyesight until one day, this chinese optometrist asked me are you diabetic? I answered no Im not. She told be there is something more going on systemic that is causing this problem, she recommended seeing an ophthalmologist as soon as possible.
“VKH is usually severe panuveitis with an acute onset,” said Janet L. Davis, MD, an associate professor of ophthalmology at the Bascom Palmer Eye Institute in Miami. The disease “affects both eyes and can be seen in any age group.” Patients often present with exudative retinal detachments. “There is often a drastic and rapid reduction of vision in both eyes, down to the level of counting fingers,” Dr. Davis said. However, patients may have a premonition of the disease with some anterior segment inflammatory signs, headache, pain and light sensitivity. “But often within a week or two, the vision will decrease dramatically because of inflammation in the posterior segment,” she said.
After a week, I found my doctor and my answer. He immediately identified the problem as VKH unfortunately since this was a rare disease not all knows the actual treatment. I was started on prednisone eyedrop every hour and was sent to a rheumatoid specialist and prescribed me with a vey high dose of prednisone . I started with 80mg for a week and weekly tapered down by 20mg and was maintained with 5mg daily for the next few months on top of the eyedrops. At first it worked, the blurry vision was gone my eyes were not red and live happily ever after... "NOT!!!!". I blew up from a smart car to a SUV, quite to an angry bird. I guess I did not read the fine print of taking prednisone . I am becoming pre diabetic, my hypertension was from controlled to stroke waiting to happened, depressed, angry and having a risk of being banned from furr's cafeteria. After few visits from my rheumatoid doctor, I told him I cant tolerate the prednisone anymore. So he prescribed methotrexate to be taken every week and the side effects are horrible. Remember the phrase all men are created equal, I tell you not with methotrexate. I felt like I was hit by a car, I feel weak and nauseated, I know now how chemo patient feels after their treatment.To make my situation worst I was working on the day my doctor started me on this medication. Luckily me charge nurse was kind enough to give me some slack by sending me home after passing my medications which I barely made. I know I need to take this medication to avoid another flare up so the next time I took it I made sure I was not working. Fall season again, my eyes started getting red and blurry. Scared, depressed and frustrated I went back to my eye doctor and end up taking prednisone eye drops every hour again. My problem was he did not give me instruction when to stop the eye drops instead I got probably 6 refills of the eye drops. I called my eye doctor's office and told the nurse my concern, she replied "I'll you call back with an answer.". I live a busy life so few hours become few days until few weeks later remembered the call, this time my vision was not just blurry Im having difficulty seeing gray, red and green. I asked for another doctors visit and got a new diagnosis Cataracts on my left eye.
A cataract is a clouding of the normally clear lens of your eye. For people who have cataracts, seeing through cloudy lenses is a bit like looking through a frosty or fogged-up window. Clouded vision caused by cataracts can make it more difficult to read, drive a car (especially at night) or see the expression on a friend's face. Most cataracts develop slowly and don't disturb your eyesight early on. But with time, cataracts will eventually interfere with your vision. At first, stronger lighting and eyeglasses can help you deal with cataracts. But if impaired vision interferes with your usual activities, you might need
cataract surgery. Fortunately, cataract surgery is generally a safe, effective procedure.
VKH... Cataracts... I feel like its getting better and better, my methotrexate slows me down weekly,Blurry vision, color blind, altered depth perception and to top that I have to now go near the monitor to chart my nurses notes. Believe me this experience was not fun especially if you have a co workers that is obnoxious and condicending. Still this did not stop me, I was working harder than before since I have to make sure I do everything as perfect as I did when I have my eyesight. For this I learned how to start an IV without looking at the vain, I feel it. I scan my medication twice before giving medication, so my routine med pass that was suppose to be few minutes becomes hours and so does charting. I guess my faith and the confidence in my abilities kept me from doing my job right. My only obstacle was driving to work. It scares me since I cant see the white lines on the road and to make it worst when a car pass by with their headlights on high beam or those bright HID headlights I slow down more since my eye would temporarily tries to readjust. I remember one of my doctors visit, the tech told me "My god how do you drive" I replied "I take the same route every day" I learned every turn and every obstacle that I need to slow down. So I asked my doctor if this problem is corrected, my doctor replied yes, but it needs to be the right time before he does the cataract surgery. At first I was ok with it read some article about it which looks promising until I found some youtube video on how the procedure was done. Hell no!!!! my anxiety level was high, Im OK i can just live with cataract. Then on the next visit my doctor finally suggested the surgery needs to be done. He explained to me the procedure and I guess with my faith and trust with this doctor I said fine I'll do the surgery even though at the back of my mind I still remember how it it done, darn youtube.
Come surgery day, I have my wife brought me to the surgicenter, that time I felt Im the only young person having this procedure. I was so scared that when my nurse started my IV i was shaking. She said "its OK we've done this a lot of time." I smiled but deep inside me "yeah right its not your eye who's being done today.". Nurse pushed an IV sedation next thing I know my wife was beside me and I have the patch in my eye.. Is it over?my wife just repld just go to sleep I'll wake you up when they give me the discharge instructions. It was not ad after all that night I took the patch out and started my eye drops next day I could see much better, the wonders of cataract surgery. I was doing fe , my left eye can see better but Im still having redness in my eye. I did not take a while before my other eye had cataracts too. to make my story short I had another surgery for my right eye. My color blindness was corrected, my depth perception was corrected, my eyesight is now restored about 70% and lived happily every after... NOT!!! I still cant see the white lines on the road clearly most especially at night, my eyes would still have redness then few months pass,my left eye started getting blurry. Puzzled, depressed, tired and again frustrated, I was one sunday in church praying " Lord,what am I going to do now. I want to serve you more but I dont have the right tool to do it." next day I called the doctor's office and the secretary said my doctor is on vacation and but I can be see by another doctor. What else can go wrong, well at that point I dont have anything to loose so I agreed. Meeting this other doctor after years of treatment from my primary opthalmologist felt awkward. I dont know what to expect. He sat down andlooked at my chart from my past treatment. at first he started asking questions why I was taking all this medsa do why I had the procedure. He then looked at my eyes and explained to me that the membrane that supports my lens was causing the problem
When the cataract is removed, your surgeon makes every attempt to maintain the integrity of the lens capsule, and normally your vision after cataract surgery should be very clear. However, in about 20 percent of patients, the posterior portion of the capsule becomes hazy some time during cataract surgery recovery or even months later, causing PCO. Posterior capsule opacification occurs because lens epithelial cells remaining after cataract surgery have grown on the capsule. In some cases, if the condition progresses significantly, your vision may be worse than it was before cataract surgery.
He then told me he will do a procedure that will clear this up.Procedure? taking to myself thinking "I just had 4 surgery for my eye and now Im having another procedure?" well before I could say something this doctor explained to my what he was going to do. he said its just a laser procedure 10 seconds tops and done.
Fortunately, a YAG laser can treat posterior capsule opacity safely, effectively and painlessly. This procedure, known as YAG laser capsulotomy, often can be performed in your doctor's office.
YAG laser capsulotomy involves just a few simple steps:
- Usually the eye is dilated before the procedure, with dilating eye drops.
- A laser removes the hazy posterior capsule from your line of sight without making an incision or "touching" the eye.
- Many ophthalmologists recommend anti-inflammatory eye drops following the procedure.
procedure, however, call your eye doctor immediately if vision worsens or fails
to improve.
He also recommended stopping some of my medication except the ones for my hypertension and cholesterol. few days later the procedure was done and eventually cleared my visoin. He also suggested using a goggle to protect my eyes. Its been almost a year now and fall is here again so far I havent had any flare ups yet.
Update:
January 8 2016 its been years now that my VKH has died down. Yes, I cant believe it would happened. My key was to protect your eyes as much as you can by making sure you wash you hand before handling your eyedrops, eat more fruits and vitamines especially with lutien (vitamines for the eyes), on allergy seasons if you cant prevent being exposed to allergens like mowing the lawn or vacuming the floow without hepa filter use a full safety goggle that covers the eye. it minimize any allergens that could trigger your flare up. Dont wait to go to the doctor to ask for steroidal eyedrops. lastly, always not to forget to pray.
Bill Withers - Lovely Day (Sunshine Mix)