The Variables of ICE Syndrome and Life

This past week my fifth grade son came home from school with an assignment to conduct his own science experiment at home.    He had to state a question, declare a hypothesis, collect data and discuss the variables that affected his results.    Having graduated with a degree in microbiology (a mere 26 years ago), it conjured up a few ol' memories of college lab days.  

It also conjured up the word "variables" that I heard just last week from a glaucoma fellow at my glaucoma specialist's office as we discussed my condition.   

As we all know, with ICE there is rarely a dull moment!    Besides the continued corneal edema, my eye pressure is elevated again and I'm also experiencing some double vision.    I was prescribed another glaucoma drop (Lumigan again) on top of my current Cosopt and will have a follow-up pressure check at the beginning of the year.   I see my cornea specialist this coming week to discuss everything else.   

So variables?    What variable is causing this elevated pressure?   Could it be the steroid drops for my transplant? Are the two tube shunts clogged and why?  Is my swollen cornea causing it?   Is it too cold outside?  Am I getting enough sleep?   Am I eating the wrong foods?   Am I thinking positive thoughts?  (....ok, I'm going a little overboard here).    But seriously, where does one start to try to figure this out?    I guess it is step by step - and I realize all health situations have variables to deal with.    I do know two things - it requires patience and this is LIFE!    As I have mentioned before LIFE IS DIFFICULT - but you CAN choose your response to it!   

I also know this - without the doctor telling me, I could see it in his demeanour.....if this pressure doesn't get down fairly soon, I'm headed for another glaucoma surgery!   Oh joy!   :)   

With regards to the corneal edema and resultant blurry vision (even after the transplant attached), my cornea specialist asked me to try to keep track of when my vision seems to be less blurry.   Here are a couple of variables I have learned these past six weeks - and that I will mention to him next week.   

1. Time of day:   Mornings are worst....evenings are best  
2. Hot steamy showers make things worst (but they sure feel good on a cold morning!)
3. Cold, cloudy, dry days are best (and I mean cold.....30 degrees F or less!)
4. Warm, sunny, humid days are worst (and I love these kind of days!) 
5. Sleeping on the side of your transplant seems to take the eye longer to clear up during the day. 
6. No eye makeup is best - probably because it doesn't have to be removed (bummer, I LOVE eye makeup!)

I'll still be working on this cornea edema "variable list" over time.   As far as the double vision....pretty clueless on this one!   More on that some other time.  

Bottom line, everything in life is about variables...it just took a 5th grade science experiment to remind me!   

All Is Well

It has been three weeks since I posted.     Life has been busy, life has been hectic and life has been worrisome.   My ICE eye is holding its own - some days are better than others - definitely not perfect - but I don't need perfect and I have no complaints.   I'm still so thankful for the miracle received last month!    The timing could not have been better!    God sure knew what He was doing through it all.  

Between other family life things and home things, I have needed time to sort through, research and act on must-do activities.    I have worried, fretted and taken many deep breaths.    I wouldn't have been able to do much of this if I had to focus on my own surgery and recovery.    So thankful!   

Through everything these past few weeks, I have focused on three little words - ALL IS WELL.    I picked this up from one of the blogs I read - it was part of a larger essay about worry.   I wrote more detail down on a piece of paper and stuck it to my refrigerator .... it reads like this:    

"There is a way of living:  abandon all worries and abide in Christ - all is well.  The relief's in the release of everything into the hands of the God.  Isn't it all safer in His hands anyways?  Abandon and abide - all is well."  

Abandoning doesn't mean we just give up.   To me, it means we turn the worry over - and ask that we be led in a direction that is meant for us.    We still need to do our homework, we still need to see doctors, we still need to face the realities of life - but turn the worry over to God.   He has the plan anyway.   Just know that in the scheme of everything - 

ALL IS WELL.  

 

ICE, Prayers & Miracles

I am a Christian.  I believe in the power of prayer.   But when it comes to ICE and some of the challenges it presents, I have been hesitant to ask for prayers.   Beyond family and close friends, it has just seemed so selfish to me.   ICE is not life threatening - it is not a life or death sentence.  Sure, it has its lifelong share of problems...problems I wouldn't choose to have...but problems I wouldn't trade for some other ailments out there.    God gave us two eyes and I'm nearing the mid-century age mark...,so who am I to complain - and ask for prayers - when one gets painful and goes bad?   Honestly.

When I had my first DSAEK surgery in February, I told a few people in my church and was on their prayer list.   I didn't expect problems  from that first surgery and I didn't expect my cornea surgeon to act as though he would prefer me - a complicated case - to vanish.   When it was apparent to me in July that things were getting worse and I was going to need to find a new doctor, I needed prayers - not just for my eye but, more importantly, for a new doctor that would understand.   I shared my concerns with a few more - and more prayers were lifted up.

Prayer does change things.   Within a week, I had a referral for a new doctor and since then, I have seen and experienced so many things that I believe are miracles - maybe coincidences to some - but definitely many small miracles to me.     Last week the adherence of the transplant - mere hours before it was to be removed - was clearly a very visible miracle to me.    

ICE won't stop there but it has allowed me to experience so much...so much more than if I had been healthy and spared from this disease.    You see, while I believe prayer led me to my new doctor and a new phase of this journey - including the tissue attachment,  I know that prayer has transformed and renewed my heart and my attitude - a most wonderful gift.   Yes, ICE - a true blessing in disguise.

A Day of JOY

I. AM. HUMBLED.

It's hard to describe.   24 hours ago, I thought at this moment -now- I'd be in post-op recovery, patch over eye, instructions for home, husband driving car up to building, husband putting seat back to the lowest level, short 1 mile drive to get home.  Spending the day head/eyes-to-ceiling, dozing in and out.  

IT. DID. NOT. HAPPEN.      

The background and story....   It is wordy and long but I NEED to remember the details...this is a day I don't ever want to forget!   

Through the recovery of my last surgery on September 1st and the two bubbling procedures following, my doctor and I have waited for my new transplant to attach.   At one of those post-op appointments, my doctor told me of a recent patient of his who had gone through very similar circumstances and was ultimately headed for another surgery.   Miraculously and out of the blue - before her surgery was scheduled - she called my doctor and indicated she knew her transplant had attached...she could see!   As a result, no surgery needed to be scheduled. In all of his years of practice, he had never seen such a case.   As we spoke of this situation, my doctor, his assistant and I termed this case "the JS" (I'm only including the initials of this "case"...  although the patient's name was never revealed to me...I want to keep even the "case" name anonymous! ).     I viewed "the JS" case as one of hope....one clearly I was not expecting, but one I could surely hope for....

Fast forward 48 hours ago...I woke up, looked at my eye and it looked different.   It didn't have the milky white appearance that I had grown accustomed to seeing for the past weeks.   It looked healthier.   As the morning progressed, it seemed as though my vision was just a bit sharper...still not great...but definitely not the complete white fog I was used to seeing, especially in the morning.   The weather had turned much colder and the humidity was down and I remembered my glaucoma specialist once telling me how vision can sometimes fluctuate with the weather.    I dismissed my slightly improved vision to the colder weather.  

24 hours ago....I woke up, looked at my eye and it still had that healthy look to it.   Surgery was scheduled for the next day...so I figured I was going to go through with it....even if my eye looked better.   But once again, sharper vision kept knocking on my door.   I had a few errands to run and was planning to leave the house in less than half an hour.    I very much debated in my head if I should call the doctor's office.    It had to be the weather, didn't it?   Wouldn't my doctor and his assistant think I was crazy if I too thought I could be like "the JS"?      Wasn't it too late to cancel surgery?    I called anyway - I had to have the peace of mind that at least I had asked about it before surgery.  

I spoke to my doctor's assistant and told her I didn't know if this was like "the JS", but my vision seemed clearer...could it be the weather?   She said possibly - but did I want to come in to have it checked out?  I hesitated...what if this was all my imagination?  I didn't want to waste my doctor's time and me feel foolish in the process.    She urged me to come in for a quick vision test and eye check...it shouldn't take long and I was scheduled for a 2:10 appointment in the afternoon.  

As I drove to my appointment, I questioned myself, hand over good eye..."Am I seeing better?  Can I really see those white stripes down the road?"   As I sat in the waiting room, it continued...."Am I seeing better?  How many chairs are in this row?". (You get the drift).    Knowing I had a balance due on my medical bills, I paid those bills at the counter and thought "At least I'm saving a phone call or a stamp by being here and getting this paid off now...one less thing on the to-do list".  (I'm chuckling right now over that thought I had!)  :)    

A technician called me to an exam room, I answered some questions and then I covered my left eye and took a deep breath..."here we go" I thought.   I could see the big E CLEARLY...and I kept on going....   It wasn't easy, it took me A LOT of time to read some of those lines....   When I couldn't go any further, she gave me the pinhole test and I could read even further - I believe to the 20/40 line.    I hadn't SEEN like this with my right eye for a long, long time (i.e., YEARS)!

I had to wait just a couple of minutes in the hallway for my doctor to finish up with other patients.    At this point, I'm starting to feel like I'm in a cloud....I'm feeling something....   I sit next to a very nice older gentleman and we start up a conversation about the weather, moving down south for the winter, his new grandson recently adopted from overseas and I share that my son is adopted too...and while not from the same country....from the same general vicinity.     "Small world" I'm thinking.     

My doctor steps out from his office, calls the nice gentleman into the room , and proceeds to tell me that I just missed "the JS"...she had been there seconds, minutes before.   One minute later the doctor's assistant tells me the same thing...our physical paths just never crossed.    I'm still in that cloud. ... I'm feeling something good....

Minutes later, it's my turn with the doctor.   He tells me he's going to switch things up with the eye chart.   I joke that he must think I have memorized it.   I see the big E, I see the smaller E's pointing in different directions.   I see letters, numbers....not easily, but I see them with lots of concentration!   Six days ago I could barely see fingers in front of my face...and now, with that intense concentration, I'm seeing 20/60!   With such vast improvement, surgery tomorrow will not be necessary now.    Come back in two weeks for a follow up to see how I'm doing.

Sitting in the big chair, I'm still in that cloud...but this time my doctor and his assistant are with me...I'm feeling something good...something happy.    "The JS" had been in this same seat just minutes before.    Two cases now...in just a couple of months...tough cases offering surprises.    In that room, at that moment, I feel and see awe, happiness, pure joy. 

The assistant calls the eye bank....the transplant tissue that had been assigned to me has not been processed yet....it should be available for another patient!   More joy!  

JOY! 

Just over a month ago, I wrote about choosing joy as a response here amidst all circumstances.   But now, not only was I living and feeling it, joy was being reflected back at me!   I could SEE JOY in my doctor's and assistant's faces, in the jumping up and down of my son when he walked in the door from school and I shared the news.    I could HEAR JOY on the other end of the phone line from my husband, parents, family members and pastor.   I could READ JOY in email responses from friends and my husband's co-workers.  What a joyful experience! 

This improved vision may last only two minutes, two days, two weeks, two years or twenty.  It is far from perfect now but I don't need perfect.   Another surgery may come sooner rather than later.   I don't know - I have come to expect anything with this eye and only God knows what plans he has for me.   I choose JOY as my response to this disease and I will take and accept it.   BUT to actually SEE, HEAR, READ pure joy be reflected from others back to me - in just a matter of hours - has been a blessing for me.   One day not to be forgotten for sure.   A miracle for sure.  

In summary, at my little family's celebratory dinner at my favorite restaurant last night, my 11 year old son ordered his favorite special flavored beverage "kiwi twist" and after he took his first sip he said, "if anyone deserves this, it's Dr. Stechschulte".   Ahhh, well said son, well said. 

Thanks be to God and for all those prayers!  

How to Prepare for DSAEK Surgery & Recovery From a Patient's Point of View

 My original title was going to be...What Your Doctor Doesn't Tell You About DSAEK Surgery....but then decided that was not fair to all of the cornea specialists (especially mine who is the best)!   They have plenty of other things on their minds to try to get your vision restored.   This is a PRACTICAL list - not a MEDICAL list!

My focus is really what makes life easier when you come home from surgery.   You see, after nine surgeries...and two of those DSAEKs...I finally KNOW what I need to do BEFORE I head to DSAEK surgery so that the 24-48 hours AFTER surgery are much easier!    I'd recommend doing these things 2 -3 days prior to your scheduled surgery.   So here you go.....

1) Lay out the clothing you will wear on the day of surgery.   Make it very comfortable but most important, make it something that is easy to remove.   When you get home, you're going to need to keep your head and eyes to the ceiling as much as possible.   Either wear a buttoned shirt/blouse or a top with a large enough neck opening so that the top can easily slip over your head.    Don't forget about easy comfortable shoes too.

2) Lay out your lounge wear/sleepwear as well.   Put it in a specific location that is easily found.   You don't want to be foraging around looking for your favorite comfies.   Just as above, make sure it is easy to put on and remove. 

3) One last clothing to-do...Lay out your clothing for the day after surgery!   Follow the rules above.   There is usually a follow up appointment with your doctor the next morning where your eye patch and shield will be removed and your eye evaluated.    You'll want these clothes to be comfortable...as there may be a chance that you'll be going home and repeating the "head to ceiling" routine again.

 4) As a follow-up to #3 above, for you gals....you know you aren't to wear any makeup/earrings/necklaces during surgery.   The day after surgery I'd recommend staying away from the makeup as well....with the exception of a little lip gloss / lip stick.    Set out your favorite jewelry, perfume, hair accessories.   Unfortunately, you are advised to not wash your hair that day...so the goal for me is do something a little special with a little accessory or lotion....something that makes me feel 'good'.   It helps the self-esteem a little! 

5) For all....set out in a specific appropriate place any medications/vitamins and health & beauty aids you may need the day of surgery & day after.   I'm talking toothbrush, toothpaste, dental floss, deodorant hair brush....anything you use routinely.....keep it in one spot at an arm lengths away.   You don't need to be searching for these items.   Also, have items out that will allow you to take a quick towel bath prior to your day-after appointment.

6) Pick out a couple of places where you will be able to keep your "eyes to ceiling" and make it as comfortable as you can (thinking blankets, pillows).  Think of different places in your home if possible.   For me, I generally have three spots.....a recliner and a sofa in the family room.....and a guest bed.    If I get too uncomfortable in one spot...I move to another.    If one room gets too noisy, I move to the other room.    The goal is to try to remain as stable in one spot as you can....but do give yourself an option if you can.

7) Have a heating pad readily available.   In my last DSAEK, I needed to look up and back which, after a few hours, caused some discomfort in the neck and shoulders.   A heating pad provided some relief.   

8) Keep the TV turned off!   It's tempting to glance at the TV....so its best to just keep it off. Set a radio (for talk shows) or CD player/iPod (for music, books on CD) near your resting spots so they are accessible and can be easily heard.   Sometimes you just want it quiet for resting.

9) Finally, think ahead of your food intake for those first couple of days.   For me, the first day I wasn't hungry at all...but still needed a little something.   I'd recommend smoothies or broth based soups.....they are easy to swallow and digest.   When you are lying down for such a long time, its easy for heart burn to set in if you quickly sit up, chew your food and lie back down.    Keep it easy on yourself.   My plan for this upcoming surgery.....smoothies, soups and water! 

10) Last, but certainly not least....look forward to your down time.   It may not be the most comfortable...but it is hope.   It is a chance to dream and imagine.    I know I'll be thinking of plans for a party celebrating my return of vision to my right eye!  

I hope this list is helpful to you.   I've had a chance to perfect it over the past year or so...and maybe will have some more additions after this next surgery! 

Now that I have my to-do list prepared, I better go get it done!  :)

A Third Try at DSAEK!

Something about a bundle of lavender just makes me smile....


I'm heading back for another DSAEK....this being the third attempt!   The second DSAEK transplant never fully attached for a lot of complicated reasons...but as I see it - because it did not - my doctor probably got to understand my eye better.  

Actually, I'm so thankful that I have this third opportunity....my first cornea specialist (who I fired - YEA for me!) was going to give up after one!    My current doctor is awesome & optimistic and I feel I can entrust my eye to him.

This surgery will take place on the morning of Thursday, October 20.   I am ready to move on in this next step of my journey! 

 

A Plato quote ...

I just read this Plato quote....and loved it!    What a wonderful reminder for all of us....you never know when it might be YOU that makes a difference in someone's day.

Be kind, for everyone you meet is fighting a hard battle.    ~Plato 

The DSAEK Bubble Bubble Bubble

If you’re familiar with DSAEK, you’re familiar with “the bubble”.    It’s the great little vehicle to help get the transplant to adhere to the back of your cornea.    You need that adherence for a chance to get the DSAEK to be successful.    The bubble’s primary requirement is that you need to be looking at the ceiling for at least one day – usually two - so that it can position itself at the right spot and adhere.

This past Tuesday, I received my third bubble.   The first one was on the day of surgery, the second one was almost two weeks later.      Bubble #1 and Bubble #2 didn’t get the job done – and it appears as though Bubble #3 can’t get the job done either.     Not that it’s the bubbles’ fault.   My doctor thinks it may have something to do with the geometry of space that is left behind the cornea.  

Well, although it has been three days since my last rebubbling, I can still see that little bubble….so as often as I can, I still lie down and look up and back at the ceiling and wall.   Today I even talked to the bubble and asked it to please try to squeeze the transplant up against the back of my cornea to get it to adhere.     I doubt if it will listen….but hey, why not try!     These bubbles have had me on my back 7+ days this month….so I figure I have earned the right to have a chat with one of them!   :)

The technology of DSAEK is wonderful and amazing and has allowed many many people regain their sight.   Although it hasn't worked for me YET, I do know that I will never look at a bubble quite  the same way again!      

Have a great day!    

On My Heart Today ....

I sit in the car awaiting the end of my son’s soccer practice.   I look at my driver’s license…”ORGAN DONOR” is lettered in red on the front.   I turn it over and see blank lines still awaiting my & witnesses’ signatures authorizing my anatomical gift should something happen to me.    Indecisive….I must do something about that I think…..Sometime a decision … 

I hear the words “young” several times from my doctor as he describes the healthy donor tissue he delicately transplanted into my eye.   I nod my head.   Inside, though, a plethora of emotions spill.    Reality sinks in.    Someone died and a family made a choice - a decision - for others to have a new chance and  I am one of those others.   I am grateful and humbled.    

I do not know the definition of “young”  – except it is the opposite of “old” and probably "not expected”.   I think of the pain & sadness a family must have gone through these past days and weeks – and what they are going through today.    I think of my eye working to accept the new tissue and my doctor monitoring & planning next steps.    I think of the prayers gone up for the donor’s family,  for my doctor and for my successful surgery and recovery.   So much going on - sacrifice, decisions, gift, surgery, healing, recovery, prayers - so much to process.   

So today, in peace, I pray for the donor’s family and their comfort as they adjust to life without their precious loved one .    Today, with gratitude, I thank God for them for the greatest gift they have given many.   Today, in humility, I pray that God will help me find the right words and the right time to express my gratefulness to them.

This is what is on my heart today.

Choosing Your Response

LIFE IS DIFFICULT.   Many years ago I started reading a book called The Road Less Traveled by Scott Peck.   I don’t remember if I finished it … or even if I agreed with many of the topics written by the author.  But I do remember the first sentence of that book  - "Life is difficult".   It has always stuck with me.  

                                                    

Yes, life is difficult.   It sometimes doesn’t hold the dreams we have for ourselves and sometimes things don’t turn out the way we had hoped.  Sometimes we don’t like the disease we have been dealt and sometimes we want  to wallow in self-pity with whatever our life circumstance may be. 

But guess what?   You can CHOOSE YOUR RESPONSE to any situation!     I read this too many years ago in the book The Seven Habits of Highly Effective People by Stephen Covey.    “Choose your Response” has always stuck with me too.      

There is a blogger I have followed for a while that  has consistently permeated CHOOSE JOY in her life – although she suffered greatly with a debilitating disease ... and now is on her journey home.  God bless you Gitz...and thank you... "Choose Joy" will also always stick with me.  

It has been two weeks since my surgery…and the results are slow and not quite what I had hoped for at this point.    It is difficult but I can choose my response and I CHOOSE JOY!    There is so much to be thankful for….hope, a supportive family, a wonderful doctor, perhaps the one or more lives I just may touch because of this ICE disease.   So in honor of Gitz, regardless of your circumstance, CHOOSE JOY!  

Keeping Track of your Eye Drops after Surgery

All right, time for a practical little tip!    After nine surgeries, I have finally found the best way to keep track of my daily post surgery eye drops!  

As you have probably experienced, for the first few weeks after surgery, you often need to take "6 drops per day of this med for 2 weeks, 4 drops per day of that drop for 1 week, then drop down to 3 and 2 respectively, etc., etc., etc. "    I don't feel like I have ever "messed up" but I must admit sometimes I temporarily forget which med I have just taken.  

Here are two tips to try...
1) Simply grab a notebook, write down the name of each drop you must take, keep the notebook next to the eye drop bottles and EVERY time you take a drop, mark down the time & the number of that particular drop of the day. 
or
2) Take one sticky note per maximum number of drops you take that day.   Mark each with a number of 1 thru that maximum number.   Each time you take a drop, move that bottle to the sticky note that represents that number of drops you have taken for that med.   A great visual of what you have done and what you have left to do!

It's just a little silly but it has worked for me this past week.   A girl has to have a little fun!   Here's hoping we're all back to one or two drops a day soon!   

Update

It has been nearly a week since surgery.   It is so nice to be up and around and starting to get slightly back to normal.    I plan on taking it very easy over the next few weeks.    

Surgery went fine.  I have no pain.    Recovery will take weeks and months with the outcomes unknown.    I will remain PATIENT and POSITIVE!   

ICE is a rare disease - no one gives it a lot of thought except for those of us who have it.   I am trying to look at this as a blessing in disguise.    There is so much to be thankful for...although in moments of stress...that is sometimes hard to do!   I have an idea rolling around in my head that one day I may suggest to others with ICE but I need to think it through just a little more.    

Remember ICE patients....remain PATIENT, POSITIVE, & PERSISTENT!   

Slowing Down

In 48 hours, my corneal endothelial transplant will be finished.   I will be home & laying flat on my back with my head consistently looking up at the ceiling.  I need to lay in this position for two days with  just short bathroom and eating breaks. 

For those not familiar with an endothelial transplant (otherwise known as DSAEK), only the endothelial layer of the donor cornea is transplanted behind the healthy portion of cornea of the recipient patient.   This is a delicate surgery - but one that generally results in less recovery time.   Once the transplant has been placed in the eye, an air bubble is put behind the transplant to help it adhere to the cornea....thus the reasoning for laying flat on ones back.....to enable that donor tissue to adhere with the assistance of an air bubble.   

I had this same procedure done earlier in the year, however, it was deemed unsuccessful....probably due to some trauma it experienced getting placed in the eye with the three tube shunts and resultant scar tissue present.    I'm hopeful I will get a much better result this time - and do have full faith in my doctor that he will give it his all.    I am thankful for the new opportunity and for all the technology that has evolved over the years.  

After eight surgeries on my eye, I have learned that I need to start slowing down - or shutting down - about 48 hours prior surgery.    I like to try to focus on relaxing, thinking good thoughts and making sure everything is ready to "come home" to.    This will be my last post until surgery and immediate recovery time is complete.     Take care! 

ICE Eyes

In my post "The Journey Begins",  I mentioned I cried when I saw photos of ICE eyes the day I was diagnosed.     Why did I cry?    If you google ICE Syndrome, you'll likely see some photos of ICE eyes....and frankly they can be a little frightening...primarily due to the distortion of the pupil caused by this disease.  

After ten years, my pupil is distorted....it sits above center and stretches to the top of my iris.    Honestly, who cares what it looks like?     Kind of ridiculous when you think about it!   :)  Yes, I feel the effects of it....my pupil doesn't adjust to light making me extremely light sensitive.   But hey, at this point, I'm thankful its only one pupil and its stretched up under my eyelid.  I just keep my right eye closed when I'm in bright light and I LOVE to wear sunglasses!   :)  

After all the surgeries & grafts, my eye doesn't look normal.   But it's me and I have accepted it.   It makes me unique!   Yes, all of this can be a pain and inconvenience for sure - but what is life without a few valleys among the mountains? 

The Middle of the Journey

So, I have been diagnosed with ICE for over 10 years.   What has happened in those ten years?   A lot.   Some years have been quiet...just 3 or 4 visits with my glaucoma specialist for pressure checks and visual field testing.   Other years have included surgeries including a trabeculotomy, three tube shunt insertion surgeries, a couple tube revision surgeries, cataract surgery and one DSAEK corneal transplant.   In a week, I'll be going through a second DSAEK transplant as the first one was deemed a "failure".  

I know there are others of you just like me, others who have been through more and others who are just getting started out.   Remember everyone to take it day by day!    Be thankful for the good days - and do not get discouraged by any day or any news.  I have to remind myself of this often.     

     

The Journey Begins

At age 38, life was busy & stressful.   Headaches were nearly a constant.   I went to a Headache & Pain Center to see if a cause could be determined.   Nothing was "found",  but with a little medication, my headaches became less severe and frequent.    The doctor did comment that it was unique that one of my eyes was a different color.   Hmmmm - I had never heard that before and hadn't noticed it before either.

Several weeks later I had my yearly routine eye exam with an optometrist for glasses & contacts.    The screening showed an elevated pressure in one eye and a distorted pupil.     I was referred to an opthamologist.    After the exam, she disappeared for about 10 minutes.....and came back and announced I had a rare corneal disease called ICE and that it caused glaucoma and someday I may need to have glaucoma surgery and a corneal transplant.    She immediately prescribed glaucoma eye drops.

I was stunned.   I remember coming home and searching the web for hours.   I remember crying too as I looked at photos of eyes of patients with ICE.    It was scary.   It was the beginning of the journey.

How did your journey begin? 

Welcome to JOURNEY THRU ICE SYNDROME!

ICE?    I have what?    It’s rare?   IridoCorneal Endothelial syndrome.
From the moment of first diagnosis through the ups and downs of living with this eye disease for years….I always wondered who else in the world has been diagnosed with this “rare incurable” corneal disease and secondary glaucoma and how can I connect with them. 

  

Over the past 10 years, as I have felt the need to ‘browse the web’ for ICE information, I would occasionally run across a database or a forum of users with ICE questions and answers….but much of it seemed outdated, not very user friendly and often times lacked an emotional connection.      It recently came to me…. Create a blog!    I’ve always wanted to start writing a blog for my little side business…but I just hadn’t gotten around to learning how to do it.    What a better way to try to connect with the ICE community and still learn some new technology!     So here I am! 

It is my hope and prayer that this blog can bring us together….that it can provide a vehicle of understanding, support, and encouragement  for the patient, family member or friend.   With ICE, some days are painful and hard (with few understanding what you’re going through)   ….  and then (hopefully) there may be weeks, months or years when you hardly think about it (except for all those eye drops and recurring appointments with your specialist).      

We are more than ICE.  At times, it’s easy to get consumed & frustrated with this disease…..but we need to share, support and keep our spirits uplifted.   We have a life to live! 

Please join me as we continue through this lifetime Journey thru ICE.   Please subscribe to my blog or visit often and comment when you feel like it.   I look forward to hearing from you!