Bethany’s Story: My Eye Started Bleeding the Day My First Child Was Born

This content originally appeared on Beyond Type 1. Republished with permission.

By Ginger Vieira

“My first bleed was almost 12 years ago — the day my first baby was born,” explains Bethany, who’s lived with type 1 diabetes for nearly 40 years, since she was 3 years old.

Despite receiving preventative laser treatments to the concerning blood vessels in this area of her eye prior to and throughout her pregnancy, the stress of pregnancy and pre-eclampsia (high blood pressure during pregnancy) were enough to cause them to bleed.

“There was a bunch of trauma around that, because the bleed was the catalyst for me to have an emergency c-section. That was the biggest bleed I’ve had and it took a long time to clear up.”

Since then, Bethany has experienced minor bleeds off and on, but has also gone long stretches of time without any new bleeds.

Ginger Vieira

Image Source: Beyond Type 1

“Last October I had another bad one,” says Bethany. “It was so discouraging, because I haven’t had any new abnormal vessel growth, I’m not pregnant, I don’t have blood pressure issues, and my A1C is stellar. It just happened.”

“It’s cleared up since then without traditional treatments like a vitrectomy or steroid shots, but it took quite a while because it leaked more blood and fluid for a few weeks after the initial burst,” she adds. “At this point, I’d say I’m back to where I was pre-October in terms of vision, but maybe it’s a bit messier.”

My Experience With Laser Treatments for Retinopathy

“I’ve only had laser treatments,” says Bethany, who’s been able to manage her retinopathy without more invasive treatments.

“I’m not sure the experience qualifies as ‘pain’ so much as ‘misery’. It’s horribly uncomfortable, and it does begin to be painful as the treatment goes on, but it’s not what I’d describe as particularly painful.”

Eventually, Bethany says she used a low dose of a mild sedative to help take the anxiety out of receiving laser treatments. While it can’t change how it feels physically, it can help make the overall experience a bit less stressful.

“It’s hard to catch your breath, and it feels like being tortured, and my eyes pour with tears, but it’s all more of a dull feeling other than a bit of a sensation that a rubber band is being snapped behind your eye.”

Parenting a Newborn With Low Vision

“Nursing a baby and not being able to see her face clearly when she’s on your left side was heartbreaking,” recalls Bethany.

“Struggling to read a book to a child, wondering if you’ll have another bad bleed when you’re at the store with your child, not being able to lift an older child because it might exacerbate the bleed—it all sucked.”

Fortunately, by the time her second pregnancy began, Bethany’s eyes were ready.

“It was so much easier,” she says. “No pre-eclampsia, no eye issues. It was such a relief after being so terrified to try it all a second time.”

Today, she says she’s careful how much to share with her children about her eye complications.

“After my recent bad bleed, it was my oldest daughter (the one who was born the day of my first bleed) who held me while I sobbed, because she was ready to support me,” recalls Bethany. “That was so bittersweet and beyond meaningful.”

What My Vision Is Like Today

“I wouldn’t say I live with ‘low vision’ today but there is a blobby mess in one eye,” explains Bethany. “My brain has learned to adapt, and I can see around it. I don’t read super fine print very well, but I’m not sure I would even without retinopathy since I’m getting old!”

However, Bethany would say she did have low vision for a period of time — and it wasn’t easy.

“After those two bad bleeds, I did have trouble with the vision in one eye for a while, until the blood cleared. That was hard, but I’m grateful it wasn’t long-term.”

However she says that it’s also affected her life in other ways when there are bleeds.

“My eyes feel strained, I have headaches, and I definitely don’t feel comfortable driving until the bleeding has cleared up.”

The worry and anticipation of a potential new bleed feels like a ticking time bomb.

“I try not to think about what my vision could be like later in life, but I do wonder if I’ll be able to see my grandkids clearly, and if I should retire early so I can make the most of my later years while I still have vision. In day-to-day life it’s pretty minimal, but in terms of mental/emotional load it’s huge and it’s always there.”

How My Diabetes Management Has Changed

“I smartened up with my diabetes management big time since the first time the doc saw something in my eye,” explains Bethany. “Since that day I’ve been highly motivated to do this well.”

Having lived with type 1 diabetes since age 3 in the 1980s with early glucose meter technology and insulin options were severely limited, Bethany feels quite sure the first 25 years of her life with diabetes led to the complications in her eyes.

“My A1c was usually in the low double digits when I was a child, because avoiding low blood sugars was considered the safest way to manage diabetes in a young child back then,” says Bethany.

By the time she was in her 20s, technology and advancements in insulin helped her manage an A1c in the 7s and 8s. Once she started using an insulin pump, she was able to maintain an A1c below 7.0 during both pregnancies.

“I’ve always, always, tried really hard with my diabetes,” adds Bethany, “but it was like I spent 25 years trying to solve a puzzle that finally started to come together in the last 15 with a pump, a continuous glucose monitor (CGM), and eating low-carb.”

While Bethany used an insulin pump for 5 years, she’s managed her diabetes with MDI (multiple daily injections) for the last 8 years, and maintained an A1c below 7 percent, and around 5.8 percent for the last year.

“Using a pump, two pregnancies, and eating mostly low-carb definitely taught me so much more than I knew before I used an insulin pump,” explains Bethany. “But I was having a lot of issues with scar tissue which made infusion sites for pumping complicated. And I hated being tethered to my pump.”

The mental game of diabetes, she adds, is a huge part of it.

“There’s always a fear lurking that it could happen again at any time. More so since this last one,” says Bethany. “You never really escape it because you never know that you’re safe. You can do everything right from a certain point on, but the damage is already done.”

Source: diabetesdaily.com

The Latest on Eylea: A Leading Treatment for Diabetes-Related Retinopathy

This content originally appeared on diaTribe. Republished with permission.

By Kira Wang

New results on Eylea, a treatment for diabetes-related retinopathy, show that the therapy reduces the risk of more serious eye complications when used for prevention.

Key findings were recently published on Eylea, a common therapy in the US used to treat several eye conditions including diabetes-related eye disease. According to Dr. Jennifer Sun (co-chair of the Diabetic Retinopathy Clinical Research Network), 60% of patients may not know they have some form of early-stage diabetes-related retinopathy which may not affect one’s ability to see. The clinical trial was focused on prevention: does early Eylea treatment of diabetes-related retinopathy result in better vision later on? The answer may not yet be clear – while Eylea was found to reduce specific vision-threatening complications, it did not meaningfully improve vision outcomes in the published study.

Eylea is an approved treatment for diabetes-related macular edema and diabetes-related retinopathy, two of the eye complications associated with diabetes. Eylea is an anti-VEGF therapy, meaning that the drug blocks VEGF, a protein that is necessary for new blood vessel growth. The medication is injected into the eye by an ophthalmologist every four to 16 weeks, depending on the severity of the eye disease.

The trial looked at 328 adults with early-stage diabetes-related retinopathy (also called non-proliferative diabetes-related retinopathy) and excellent vision. At the beginning of the study, about half of the eyes received Eylea injections every 16 weeks, and the other half received a placebo injection (which included no medication). The preliminary data were reported through two years. The study will continue for a total of four years.

The researchers were studying two main outcomes in these eyes:

  • Changes in the anatomy of the retina (for evidence of either a more advanced stage of diabetes-related retinopathy, called proliferative diabetes-related retinopathy, or the development of swelling called center-involved diabetes-related macular edema). These can be thought of as structural changes in the eye.
  • A functional difference in participants’ ability to see, known as their visual acuity. See below for key findings after two-years:

The trial found that Eylea led to improved anatomical outcomes and reduced the risk of more serious eye complications:

  • Eylea reduced the risk of developing complications by 68% when compared to the placebo. The probability of developing any complication was 16% in the Eylea group and 44% in the placebo group.
  • Individually, participants taking Eylea were 66% less likely to develop more advanced stages of diabetes-related retinopathy (proliferative diabetes-related retinopathy) and 64% less likely to develop macular edema with vision loss.
  • People receiving placebo injections were five times more likely to need additional treatment (with Eylea) with worsening of the eye disease.
  • There was no difference in the vision quality of either group after two years (excellent vision in 75% of the treatment group and 72% of the placebo group).

The four-year results of the trial will be important in determining whether the higher rate of complications in the placebo group might eventually lead to more vision loss in that group. If this is the case, treating diabetes-retinopathy in its earliest stages with Eylea may present a long-term benefit for vision.

There are several treatment options for diabetes-related eye disease, including oral medications, laser treatments for the eyes, and therapies like Eylea. Increasingly, surgical techniques are being used for less advanced stages of diabetes-related eye disease. Other novel strategies are also being investigated to avoid needing regular injections into the eye.

More information is needed before Eylea can be considered for use as a widespread tool to prevent worsening of diabetes-related retinopathy. Dr. Sun’s bottom line for clinicians and patients? “With regular follow-up and rigorous evaluation, the chances of continuing to have good vision, even with severe non-proliferative diabetic retinopathy and moderate non-proliferative diabetic retinopathy, are excellent. I don’t think this study says that early treatment should be routinely given yet. It is important to hang tight and wait for four-year results.”

The most important action people with diabetes can take is to have an annual dilated eye exam, in addition to managing glucose, blood pressure, and cholesterol levels. If diabetes-related eye disease worsens, there a number of options that can be used to prevent vision loss. To learn more about protecting your eyes and treating eye disease, check out our series: Caring For Your Eyes.

Source: diabetesdaily.com

Managing My Anxiety of Possible Retinopathy

I remember feeling anxious. Sitting in the waiting room of the eye doctor in March of 2019, I knew this sensation all too well. It came from my experience of receiving “bad news” one too many times. I was nervous but quietly tried to connect with the inner knowing that I was not the only person who has to go through these types of feelings. With a deep breath in and a long breath out, I thought of my friends within the diabetes community who constantly remind me that I’m never alone.

When you live with diabetes, it often feels like you’re just waiting for that next thing to go wrong. We try to be positive but at the end of the day we’re still human and being scared of the unknown is normal. Even people without diabetes typically know the risks associated with trying to manage blood sugars without a properly functioning pancreas and/or metabolism. Heart disease, nerve damage, kidney failure, and blindness are issues people with diabetes may live in fear of since day one of their diagnosis.

Deep down, I knew something was off. My vision had changed enough that I had a sneaky suspicion this time would bring that moment where I would be told that there were now signs of diabetes in my eyes. And I was right.

The doctor informed me that I had retinal bleeds in both my eyes but that “I didn’t need to worry” and they wouldn’t need to treat it just yet. She even kindly offered to check them again in 6 months time if that might make me feel better. It did… and at the same time, it didn’t. I suddenly felt sick to my stomach. Thoughts of friends who have gone through so much with their eyes raced through my mind. Would I have to experience all of that, too?

Photo credit: Sarah Macleod

I started to cry and felt the same sadness wash over me that I had felt in 2012 after being diagnosed with gastroparesis. The guilt and shame I had been working through for years knocked on the door to my heart but I knew that the only way through this moment was to face this new information with acceptance and an attitude that I wasn’t powerless.

I had been taking a pump break while in yoga teacher training and had decided to continue on injections after I had graduated from the program. However, upon being diagnosed with retinopathy, I made the decision to switch back to my insulin pump once again. Everyone is different, but for me, having an insulin pump is a privilege and asset I couldn’t ignore. I knew that utilizing the technology available to me would be in my best interest.

When it came time for my next appointment, the world had already been impacted by COVID-19 and I wasn’t able to get my eyes checked when I had anticipated. I did my best not to let the fear creep in, but working from home and being on screens more than ever before didn’t do much to quell my anxious mind. Yet I knew I had to keep going.

For months, I tried to find a balance between discipline and letting go of what I simply could not control. I stayed connected with the diabetes community and my peers who understood what it was like to be managing diabetes daily while also navigating additional complications, illnesses, and issues. Utilizing tools like emotional freedom technique, guided meditation, and yoga continued to be a way I could serve myself while remaining focused on the balance I wanted to achieve.

I can’t tell you how many tears I cried. The worry would consume me most when I thought of a potential future pregnancy, breastfeeding, and motherhood. I wanted to see the children of my dreams and soak in every freckle on their face, their tiny fingers, and little toes. I wanted to see my children grow and watch them become who they were meant to be. If I lost my vision, how could any of these dreams come true? I found acceptance in knowing that I was willing to do whatever it took to preserve my vision even if that meant facing treatment options that terrified me.

It took me so long to make that next eye doctor’s appointment. Yet I knew in 2021 I wanted to address any of the issues I had been avoiding because of the fears that still existed within. The night before my appointment, I joined a meditation session with my diabetes friends and appreciated the energy, loving-kindness, and support that our “diabetesangha” was offering to me. It allowed me to relax, be present with how I was feeling, and honor any emotion that was coming to the surface to be acknowledged and released.

Sitting in that chair again, eyes dilated and heart open, I felt hopeful that I may be given the news that nothing had changed and to just keep working towards optimal glycemic control. However, the news I received was even better than I had anticipated. The doctor told me she could no longer see any signs of diabetes in my eyes. The retinal bleeds were gone and I was doing just fine. I was overjoyed and elated at the knowledge that I had reversed my diabetic retinopathy.

Each one of us living with diabetes is different. Despite ardent efforts and steadfast diligence, we don’t always receive positive news or the outcomes we are most hopeful for. Yet it is important to recognize that we must not give up even when we’re given bad news. There are avenues of support as well as resources and recommendations from peers and professionals that can offer us a sense of empowerment. If you are struggling with diabetes complications, remember that you are never alone and that there are people who understand what you’re going through. Don’t lose hope and keep in mind that there are many paths to healing ourselves body, mind, and spirit.

Source: diabetesdaily.com

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