A glaucoma patient's notes to self

This week the FitEyes community provided important answers to my emotional question about checking my eye pressure at home. I asked, 

Remind me again why some ophthalmologists have an aversion to a patient doing home tonometry? I just met a new glaucoma speciallist. I very much liked his approach on everything else and his thorough willingness for deep dialogue, but he said if I brought any eye pressure data with me that he’d not look at it. To me, collected data might spot a badly swinging upward trend in intraocular pressure ("IOP") that would cause me to call for an appointment between the regular visits, and I should think a patient on guard against rising, troublesome numbers would make his practice more effective for the patient’s treatment outcome?  Thanks for any input, but please don’t criticize the doctor as much as help me understand his point of view.

The replies have been laden with valuable experience and sage advice. I have taken many responses to heart.

Here are my notes to self, which I have printed as a statement of faith to guide me through my next years.

I am now leaning towards the refusal to discuss patient-collected intraocular pressure as important data that could beneficially supplement data collected in the clinical setting as a fundamental dislike of patient involvement. Some professionals may see patient involvement as confrontational and a challenge to their abilities as a learned professional while others may see it without affront and simply as ill-informed patient chatter which slows the schedule. There are many other reasons on a long spectrum of opinions between these two views.

I have determined not to challenge a professional as no one likes confrontation, being called out on the spot. Instead, I will first seek someone in alignment with general patient engagement. This may require quite a few “first visits” as interviews. Someone who acknowledges the body as a whole will also be on my list, meaning they acknowledge diet and exercise and mental focus being impactful in disease. Someone who is interested and engaged themselves in following leading edge discoveries, even research involvement will be a prize to meet.

If it is impossible for me to be treated by a glaucoma speciallist of such a high caliper as I seek because of a limit to my finances or a limit of my ability to travel to such a professional’s location, I will seek a professional with the most varied experiences I can find and work in tandem to their plan. I will agree to their treatment plan as we share a common goal. I will continue to read daily and educate myself as thoroughly as possible and be actively involved in my body’s health. I will continue with my intraocular pressure readings and daily journal of “everything” (intraocular pressure, diet, mood, activity, blood pressure, blood glucose, etc) because it is my glaucoma and I chose to be my own best advocate. 

As a patient, though, there is a line to my compliance. I will not blindly acquiesce to all treatment plans. I will weigh the doctor’s treatment plan against what I have learned through self monitoring and daily research and from the experience of others. I will retain the ultimate approval of my care. I have the ability to decline any treatment plan, drug or surgery. I also have the option to say I need a few weeks to ponder the proposed plan. I have the option to walk away and pursue alternative medicine and alternative dietary and lifestyle strategies and another doctor who will better align with me.

It is my eyesight and my life. The quality of my life is important to me. How I react to my decline or to doctor proposals is my choice. I will make decisions peacefully, without duress or threat and with understanding. “You risk going blind” is a bully of a threat, but it is also a reality to be fully contemplated. I do not wish to go blind, no one does, and I will seek the wisest counsel I can in my fight against visual decline as long as possible.

I realize being less than compliant and submissive has the inherent risk of being declined as a patient. Yet, I will also reserve the right to appear to be the compliant patient while in truth being less than compliant at home. I may not share this with my doctor if I feel sharing would jeopardize continued treatment. One area of non-compliance I already practice is micro-dosing, which technically is not administering the drug as prescribed.

I will continue to feel blessed to have found a glaucoma speciallist (a 6-hour drive and an overnight stay for my driver and I) who delights in coming alongside me as a partner in my care, who delights in my involvement, including home tonometry, and who is also committed to staying current with investigative glaucoma research regarding new medications, new devices like the Beacon, leading-edge surgeries, and especially non-invasive laser procedures.

If I agree to a surgery or procedure, at that time I am paying for my doctor’s skill, experience, and wisdom gained from these. I have carefully listened to the details and am agreeing to be compliant. Purely speaking, it is now a transactional agreement:  I trade my trust and money for services I believe may help me. I also willingly sign many papers acknowledging the inherent risks. All of life involves risks, and carefully and prayerfully calculated risks are a part of it.

I challenge you to draft your own positions on paper and insert it into your glaucoma log book.