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!