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Brittle

~ Loving life while living with Type I Diabetes

Brittle

Tag Archives: diabetic retinopathy

Lord of the Flies

30 Wednesday Jul 2014

Posted by lifeonthecutoff in Diabetic retinopathy/eye problems from diabetes

≈ 3 Comments

Tags

diabetic retinopathy, epiretinal membrane, epiretinal peel, Post eye surgery update, The Lord of the Flies, vitreo-retinal specialists

LordOfTheFliesBookCoverTom still has it; the stamina, the fortitude, the razor-sharp aim. Even with altered vision and fingers scarred from thousands of blood inducing needle pricks, Tom still has it. He can still take down a common house fly with laser precision using nothing more than a rubber band.

Tom IS the Lord of the Flies.

It has been far too long since our last post here. Life and time just got in the way, but, I did want to let you all know how things are going with Tom since his eye surgery this past December.

He is doing well. His right eye has healed. He is working hard, both designing at the computer and in the office, and physically, building things, repairing the riding mower, hauling tree limbs, chasing grandchildren, and forever digging holes for me to plant in.  Tom soldiers on.

While the surgery went well, Tom’s vision has not improved as we had hoped. The macular edema remains a challenge as it still “thinks” the epiretinal membrane, peeled away during the surgery, is still in place. In an effort to retrain the macula, shots continue to be injected into the eye by the retinal specialist. The good news is that the length of time between shots has lengthened, giving us hope.

In-the-meantime, Sir Thomas is still the Lord of the Flies!

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The Importance of Eye Exams

30 Thursday Jan 2014

Posted by lifeonthecutoff in Diabetic retinopathy/eye problems from diabetes, Uncategorized

≈ 2 Comments

Tags

Diabetic eye conditions, diabetic retinopathy, proliferative diabetic retinopathy, vitreo-retinal specialists

When originally diagnosed with diabetes in the mid-1960’s, Tom was put on an oral medication, told not to exercise, and DSCN3924to see an eye doctor if he had any vision problems. The active 16-year-old basketball player paid the doctor no heed and continued to shoot the hoops on his high school team, run track, play football. He went on to college, where he was finally put on insulin injections. He kept active, ate as well as one could on cafeteria food, and acquired a new doctor for the duration of his college years. Dr. Stevenson steered him on a better course of care, which we wrote about here and here.

When we married in 1973, Tom started seeing my internist, Dr. K, who encouraged Tom to stay active, continue his dietary regime, and to come in for yearly check-ups. Dr. K was the first doctor to acknowledge that Tom was a “brittle” diabetic, a term neither of us had heard before, but, one that explained the extreme ups and downs of sugar levels, which came, still do, for no apparent reason.  Dr. K wrote a letter for Tom to carry explaining his possession of hypodermic needles when we flew to the Bahamas in 1975. We were more concerned about flying over the Bermuda Triangle than the needles he carried. Times have certainly changed since then. Tom still has that letter, though he is now on an insulin pump and carries all sorts of supplies and extra food in a backpack when flying.

Dr. K was a remarkable internist, diagnostician, and human being. It was Dr. K who sent Tom to an infectious disease doctor and a plastic surgeon for a foot ulcer, the first of many trials brought about by diabetic neuropathy, in the mid 1980’s.

On Christmas Day in the morning, 1987, Dr. K responded to an urgent call from Tom when he awoke unable to see out of his left eye. Tom knew then that something very serious had occurred. Dr. K recommended a young ophthalmologist, Dr. P, who said that Tom had the worst case of proliferative diabetic retinopathy he had ever seen, and so began Tom’s first journey in dealing with vision problems caused by diabetes, and the first time he was referred to an ophthalmologist.

Early diagnosis by an ophthalmologist would have likely diagnosed this condition sooner, although even with a thorough exam, the hidden intricacies of diabetes and vision can appear suddenly, especially in a brittle diabetic. Today, one could also be referred to a vitreo-retinal specialist.

If you know a diabetic or are one, we encourage you, no, we insist that you visit an eye specialist at least one a year. Penny

Grasping gratitude

18 Wednesday Dec 2013

Posted by lifeonthecutoff in Diabetic retinopathy/eye problems from diabetes, Type I Diabetes/Juvenile Diabetes

≈ 10 Comments

Tags

air bubble during and after eye surgery, diabetic retinopathy, epiretinal membrane, epiretinal peel, vitrectomy

DSCN3730As we spooned the last of the broth from our steaming mugs of chicken soup, Tom and I reflected on our day. We don’t often sit in the ground level family room for our meals, especially when eating hot soup. Tuesday, however, was an extraordinary day that necessitated this. There Tom sat, on the couch,  with me perched precariously on the edge of the recliner nearby, the coffee table pulled close, and a candle glowing atop a Christmas tea cloth.

Ten hours earlier, Tom was draped from head to foot, in an operating theater, with only his right eye exposed. After more than two years of treatment for several eye issues related to proliferative diabetic retinopathy, and a postponement for surgery when it was discovered he had major blockages of two arteries, Tom finally underwent the delicate eye surgery to remove an epiretinal membrane, brought about by long-term diabetes, and a vitrectomy, in which the vitreous was removed from his eye, laser treatment was done to the retina, and an air bubble was implanted to keep the retina in place. By 10 am, we were home, a patch on Tom’s eye and instructions to lay at a 95° angle, sitting up only to eat.

We ate, then we talked about gratitude; for good doctors and nurses and hospitals and for the ever-moving landscape of modern medicine and technology that continues to advance in directions undreamed of a few decades ago. We talked about how fearful we had been for this surgery and recalled the vitrectomy Tom endured more than twenty years ago, spending the night in the hospital, on his back for weeks, and the pain he experienced. Advanced technology and equipment now allows doctors to perform eye operations with more and more exactitude. Newer drugs allow for patients to be sedated, rather than completely anesthetized, making for quicker recoveries, especially for the diabetic patient.

We marveled at doctors who are not only experts in their specialties, but who are more aware and respectful of the patient as a whole being. Tom was able to wear his insulin pump the entire time of the surgery. At his endocrinologist’s coaching, he was able to adjust insulin for the pre-op time he would not be able to eat and for the surgery. Tom controlled this, as well as checking his blood sugar, except for the hour of surgery. His wonderful retinal specialist, as well as the anesthesiologist, endocrinologist and the cardiologist worked in tandem to ensure the best possible medical scenario.

We spoke of hope; for Tom and a future where we will not know for many months what vision he will have in his eye, though certain that without the surgery there was no hope. Tom spoke of hope for all the children who have Type I diabetes, and for their parents’ hope as well. These children will have an easier row to hoe as they grow to adulthood, careers, families and a life much improved in the treatment of this insidious disease.

As we finished our simple supper, reflecting, it was all as if the steam from the nourishing, hot soup was grasping our gratitude, marvel, and hope, in spite of a brittle situation, and carrying it upwards like the anticipatory candle of this Advent season.

Housekeeping

06 Wednesday Nov 2013

Posted by lifeonthecutoff in Diabetic retinopathy/eye problems from diabetes, Type I Diabetes/Juvenile Diabetes

≈ 6 Comments

Tags

diabetic retinopathy, epiretinal membrane, epiretinal peel, Ron Santo, vitrectomy

DSCN3342We meant to post sooner, but, life has managed to get in the way, and we find we need to do a bit of blogging housekeeping.

Thank you for reading Brittle. Thank you for commenting. We are finding that we may not be able to respond to everyone, at least for right now, hope you understand and that you know that your thoughts and words are appreciated. However, if you have a particular or pressing thought or concern about diabetes, DO feel free to ask. We will get back to you as soon as we can. We both love to hear from you all.

Our first posts were about our early days dealing separately, and as a couple, with JD. We hope to do more of that. We spoke of Tom’s early experiences with insulin reactions and how Dr. Stevenson got him on track in the early years. There have been other doctors along the way which we hope to bring to light, and there are doctors right now who care for Tom.

In the early years, there were no glucose monitors (glucometers), nor were there insulin pumps. It was a guessing game, at best, to where Tom’s sugar levels were the first 15 or so years into his condition. It made living with Type I diabetes even more of a challenge. It also set the stage for diabetic related conditions; neuropathy, retinopathy, circulatory issues, foot ulcers, etc.

Tom has been dealing with a serious visual problem in his right eye for several years. Treatment, in the form of shots in the eye, kept the condition initially at bay, but have brought on several eye infections, one of which was dire a little more than a month ago. We are currently preparing for a delicate surgery in a few weeks. Tom will need a vitrectomy with a peel of an epiretinal membrane. It is complicated. Recovery will be slow, Doctor visits long and often. We are hopeful. Our energy levels just aren’t where they need to be to write at the moment.

Until that level returns, I thought you might like to read a post I did several years ago when Ron Santo, a Chicago icon, passed away. There is a connection to Tom, and you can read it by clicking on here.

We’ll be posting again soon. Penny

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