More Glaucoma Surgery ?

The week has passed and the verdict is in  –  more glaucoma surgery!   This will be my tenth eye surgery.   You know, I accept it and am at peace with it.     What choice do any of us have when things don’t work out the way we’d like?   I know I have preached it before, but we choose our response.   

Sure, I would prefer to not have surgery  - but I know, in my heart, there is an overall master plan for my  life – one that I may not be fully privy too right now –  and somehow, this is a part of it.   

Now for the details.  The pressure did not go down with the 2 ½ week trial of an additional med.   In fact, it went up a couple of points.    After the exam, my doctor described some observed facts – but bottom line, the most easily accessed tube shunt will be repositioned, cleaned out, etc. and a new patch graft will be added.      My surgery will probably take place on February 13. 

While I know that my eye will always have issues , I do hope this will settle my eye pressure for a while and perhaps calm some of the other complications.   But also, if I look beyond myself, I hope through all of this …. my doctors can take their experience of working with my 'rare-diseased-eye' and use it to be able to help and treat some other ICE – glaucoma – corneal disease patient more effectively in the future.      I trust that they will do so, and for that, I feel that I am helping in some small way. 

Blessings and joy to you – LIVE TODAY!

ICE Syndrome & Kansas City Doctors

Finding a doctor you can trust AND LIKE is rarely an easy task.   Throw in a rare eye disease involving two different complications - glaucoma and corneal edema - and now you must find TWO doctors/specialists who know something about ICE , who are willing to treat you, who you can trust AND who you like.   This can be a daunting task.   Fortunate for me, I feel like I can finally say "task complete". 

Trust me, it hasn't always been this way.   I was blessed to have an optometrist back in 2000 notice "high pressure" in one eye and refer me to an ophthalmologist with glaucoma as a specialty.    Thankfully, she diagnosed me with ICE right away.    I have read that many times this can go undiagnosed for years so I am very fortunate.     Although my optometrist at the time caught the symptom, it was clear later that he wasn't excited about having a 'rare eye disease ' optometry patient.     My initial ophthalmologist was able to manage the high pressure with drops - she was nice, but I had little confidence that she could go the distance with me and my condition.   

Bless my husband who researched and found one of the best and most well-respected glaucoma doctors in Kansas City and the midwest.   After meeting him, I "hired" him and he's been my doc for the past 10 years.   I've seen him at least once every 3-4 months and have had seven surgeries with him.   I so remember the look of concern and his considerate swift action when my pressure shot up so high once that I thought the right side of my head was going to erupt.   I trust him.   Although he is extremely busy, he is always pleasant, takes time with me.   I like him.   

Finding the right cornea doctor wasn't so easy.    My cornea issues really didn't start getting critical until about 18 months ago.    I was referred to a cornea specialist by my glaucoma doc.    From that initial appointment, I just didn't like that doctor - he was full of himself, he was condescending, he didn't need a complex case.  I should have gone with my gut - and fired him right there - but I waited the three months for surgery and didn't bother getting another opinion.   Surgery was a disaster...he complained - along with exasperated sighs -  the entire time ("hello, I'm awake down here") about all the scar tissue, about having to trim the tubes to make room for the transplant, how he couldn't get the transplant squeezed in, how the transplant was probably damaged, on and on.   During surgery, I was so tempted to call a time-out and end it right there.   As he left the surgery room, he told the nurse that this DSAEK procedure "wasn't for the faint of heart" ("hello, I'm still awake over here!").   He complained to my husband "she made me work" ("hello, you're a doctor").    Hey, I'm a realist, I don't demand perfect outcomes - I know I'm a challenging case - but I do demand respect.   After continued post-op disrespect and lack of concern by this doctor and most of his staff, I fired him.  

When the time came to see a cornea specialist again, I asked for another referral.    This time I got a winner.   He is so respectful - not just of me - but I see how he treats the staff and his other patients.    I trust him.   He likes a challenge, he is human, he communicates with my glaucoma specialist.   When I meet with him, I feel like I'm talking to a friend or family member.   We may not have gotten the ideal outcome from this latest DSAEK, but at this point it is manageable.   We have an idea and a basic plan of what may lie ahead.   He is most definitely hired as my cornea specialist and as my general eye care doctor.   His staff is wonderful too.   

Miracle of miracles, just a couple of months after my initial consultation with my cornea specialist, his sister (also an ophthalmologist) began working in a fellowship program with my glaucoma specialist.   She is just as nice and caring as her big brother.   

I am blessed and thankful for having such great doctors to treat me and my symptoms of ICE Syndrome.   If you live in the Kansas City or midwest area and have been diagnosed with ICE - or just glaucoma - or just cornea issues, please feel free to send me an email.  I'd be pleased to recommend my doctors to you.  

Have a joyous day!  

A New Week and Peace

It's a new week.   Happy Monday!   Unfortunately, I'm starting it off with a dull ache in that right eye...not good.   But my plan is to keep busy, keep my mind occupied and forget about it!     Believe it or not, I still have a few Christmas decorations to put away - and as always - some laundry, picking up and menu plans for the week.     I don't believe I have mentioned before that I sell some items (mostly of the collectible nature) on ebay - and I may try to get a few of those things listed today.     In previous posts I have discussed "distractions" - I whole-heartedly approve of healthy distractions - they can keep up going and push us along through difficult times.   

This week I see my cornea specialist on Tuesday and glaucoma specialist on Friday.   It is a big week.   A few prayers for peace, deep breaths and distractions - that's how I'm going to make it.   In some difficult times in my life I have relied on certain bible verses.  One of them is John 14:27.   In this verse, Jesus said "Peace I leave with you, my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid."    

It's not easy but...Abandon and Abide - All is Well.   PEACE!

ICE and Glaucoma

If you have read some of my previous posts, you know that I have had many battles with one of ICE's key symptoms - glaucoma.    I'm in another one of those battles right now.

On Tuesday, I had a follow up visit with my glaucoma specialist - and despite a new medication, my pressure in the right eye is still too high.   Fortunately, I got to buy myself another two weeks by trying one more medication to see if there is a chance it will work.    If not, another surgery is in my immediate horizon.  

Speaking of horizons, is there anything more peaceful and serene as the sun setting on the horizon reflecting its glorious light over water, like in the photo above?   Oops, I digress!

Back to topic.   Six of my nine eye surgeries have been glaucoma related.   I have three tube shunts and plates in my eyes to try to dissipate that fluid to keep the pressure low.    Why in the world won't these things work?     I'm guessing they get clogged with corneal debris....but then why can't they just be cleaned or lasered out?     I asked the glaucoma-fellow-in training....which led to a discussion between her and my specialist.   After getting examined by both doctors - it sounded like one of the tubes couldn't be found.   What happened to it?    At this point, who knows.  Nothing surprises me anymore!  

So I wait two more weeks - hoping and praying the aches and pains of this eye stay away, the tunnel of vision that I do have doesn't get any narrower and this new additional drug does its trick.   If not, I hope and pray my doctor researches and determines the best route to go.    

Honestly, I do fret - but I constantly remind myself to live in the now - to choose my response.   I look out my window right now and I see sunshine on a chilly day.    I am thankful.   It's not quite a sun setting over a lake or ocean - but I'll take it on a mid-January day in Kansas!    

Distracted with ICE - a blessing?

Wow - where does the time go?   It has been nearly a month since I have posted.    I'll blame it on distractions....December has a way of distracting.    Christmas decorating, shopping, celebrations, family time - you name it - it makes the time fly.   It has a way of tiring me out - but I'm not really complaining.

The status of my eye is not great.    The week before Christmas, I had an appointment with my cornea specialist.   My eye pressure was still high - which tells me the new med is not doing its thing - but I'll find out the final truth next week when I meet with my glaucoma doctor.    I have had days when I know the pressure has climbed - when I have that feeling that someone is pushing their thumb through my eye and into my optic nerve.   I know some may say it is difficult to actually feel this increased pressure -  but after 10 years with glaucoma - I'm pretty confident I know my eye better than  anyone.   On these days, it can be discouraging for I wonder if it is slowly permanently stealing my vision.  

My cornea is hanging in there....very blurry vision in the morning and clearing throughout the day probably to about 20/200. Oh well, I can live with it.   The good news: no cornea blistering, tearing or pain.  

There is no doubt I have a very sick eye and one that is probably on borrowed time.   But I am blessed - for it is only one eye.    I am blessed with distractions throughout December and the rest of the year.    I am blessed in so many ways.   

My plan for the year 2012 - count my blessings - be thankful in everything - choose joy.   ICE (and all its complications) is not something I would have chosen to be given - but it is what it is - and I will find the good in it.   

More later my friends - and HAPPY NEW YEAR!