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!