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