Taking control of my medical care
At my appointment two weeks ago I was so confused with the results from the pentascan in my right eye (good eye). He said that the result was consistent with that from last year. What?! Corneas don't grow back, so how could it be better than last months? Noting that last months was so bad they thought I would be blind within months. I called back straight away for clarification, but the doctor wants to tell me in person at my next appointment.
I'm also confused about my cornea graft, the Sydney doctor has said a treatment plan that has my stitches being removed at the six month mark, but the Canberra doctor says they can be removed in 3-4 months. So which is it?
In my state of overwhelm I asked myself 'what would I say to a coaching client if they came to see me for assistance...?'. I would help them to 'chunk' their concerns into more manageable bites. Oh crap, chunking. I never quite got that ... Or so i thought. I spent the day noticing my thoughts and seeing what was bothering me. At the end of the day I sat down with my notepad and wrote each of the issues that are worrying me (see picture). Then I took out a page for each issue and I wrote down one or two actions I could take within a week and I put a date next to it. I prioritised my letter to my doctor and to work, and left jobs like contact Vision Australia or reading about the National Disability Insurance Agency for later in the week. It was all out of my head and I could see a glimmer of light.
These are the questions I wrote to my doctor:
I am ok with how this is healing. I’m getting used to the discomfort or occasional pain and have
found that the more I rest my eye the better it feels. Questions are:
1. Now that you know I have a full-thickness graft, what does that mean for my recovery
timeframes as outlined in the letter to my work? Specifically:
a. Estimated time until stitches can be removed (initial plan was 3-4 months post
b. Estimated time until this is complete (initial plan was 6 months post surgery)
c. Then I am right in saying that it will still take 3 months for my vision to stabilise from
2. At the Canberra Hospital when you referred me to Sydney for the graft you said that you
didn’t have high hopes that this graft would regain any sight, that it was more of a patch and
that I may need to do another one in the future. Is this still the case?
I am noticing that I am now unable to read much of an A4 document with normal print size, so I am
getting concerned that we are in a race for obtaining sight in my graft eye before the right eye gives
in. The more I rest and don’t use a computer or try to read the less stinging / dryness occurs and
then when I do try to read something it is clearer. Questions are:
1. What is the pentascan result from June 2014, January 2015, May 2015 and June 2015?
2. Then i would like to know your perspective on how quickly it’s degenerating.
3. If the cornea thins to a point of concern, what is that? Is there some percentage or scale that
you could tell me each time we do a pentascan that starts with ‘my cornea is currently X%
thickness’. So that when I return for a scan you could say ‘my eye is stable, no change’, or
‘my eye has deteriorated and has now moved from X% to X% of thickness’. (this will greatly
help ease the anxiety with the countdown that is going on in my head on a daily basis).
4. I see it that we have two factors to consider with my right eye:
a. How long I can see with the assistance of glasses for
b. The thickness of the cornea
5. Is there anything I could be doing to slow down my eyesight from decreasing? (Assuming
that the decrease in vision isn’t from the cornea thinning). Would reducing stress help? or
reducing my hours on the computer or reading help? I am willing to consider locking myself
in a bubble if that will mean that I can retain what sight I have in my right eye until my left
eye is stabilised.
6. If this cornea thins to a dangerous level, will you do the cornea graft before the left graft has
given me some sight?
7. Will you keep doing cornea transplants on either eye or both eyes until I can see
adequately? Ie be able to drive and engage in some activities with my sight?
Keeping all of these questions in mind, I am thinking that it may be more than 12 months until my
eyes have settled and I return to a more stable condition.
I feel good after writing this letter. I am steering my bus (as Anthony Robins would say). I am arming myself with the information I need to move forward.
I am at peace with what is....