Category Archives: Diabetic Retinopathy

YouTube

I fully intend on continuing to write here, I’m just a bit burnt out on it for now.

In the meantime I have been making videos on YouTube regarding all the same stuff I write about here. I have a total of three videos posted as of this post.

Check them out if you like.

https://www.youtube.com/channel/UC3KOi-Y0gQioRcQpG17hwGw

I have the videos set to 18+, so you will probably have to log in and/or “verify” your age.

Some Good News For Once

I woke up early this morning, as I have almost every single day for the past week. I’ve just been going, going, going nonstop for awhile now. There’s a lot going on in my life at the moment and it’s busy, stressful, but working out OK so far.

All the tough, nonstop physical activity has made an impact on my body, though. I’m exhausted, my BG can’t decide if it want’s to be high or low and so it just seems to bounce from one extreme to the other regularly. I started my period a week early and it’s pretty heavy.

TMI, I know.

Well today I had an eye appointment. My regular eight week Avastin injection. When I got there I was told the doctor requested a scan of my eyes before the injection, so I had that done first.

After the scan the nurse prepped my left eye for the injection and then left me to wait on the doctor.  He came in and we said our hello’s and then he took a look at the scans.

“Well, guess what, your eye is nice and dried out. You don’t need an injection today.”

“Oh, wow, nice!” I said happily.

“You must be living right, keep it up. We’ll have you come back in three months for another scan and go from there.”

“I’m so happy.”

“Congratulations.”  He smiled.

Well, it’s so nice to have some good diabetes news once in awhile.  😀

Optical Illusion

I had a consult with a plastic surgeon. More specifically, he is a oculoplastics specialist. The reason I wanted to see him was to find out if there is any way I can get my “winking eye” to look more normal again.

He’s a kind and soft spoken but straight forward personality. He first asked me, “what are you hoping to accomplish here?”.

“Really I would like to make my right eye look more like my left again.”

We went on to talk about my history with Diabetic Retinopathy, my four surgeries, several laser treatments, every eight week injections, and the fact that my right eyeball has shrunk, etc.

Then he took a good long look at my face and eyes, really studying things. He used a tool to take measurements and comparisons  between my two eyes. He had me follow his finger with my eyes.

“It’s really all just an optical illusion.” He said as he reached for a blank piece of paper and pen.

He drew diagrams as he explained to me what’s going on with my eye and what my options are.2016-04-21 10.32.11

My first option would be to have a lid lift, but I don’t really qualify because I don’t have any drooping of my eyelid. The perceived droopiness is because my eye has sunken into it’s socket due to fat loss around the eye from inflammation caused from my surgeries. Apparently fat cells are very sensitive to inflammation and get destroyed by it. So my eyelid looks droopy but is actually working just fine.

The second thing he explained to me was that although my eyeball has shrunk, it really hasn’t shrunk too terribly much. What is making my eyeball look smaller and my eyelids look like they are droopy is that my eyeball has sunken farther back into the socket. It is set 2-3 millimeters farther back then my left eye. This was probably caused by the fat loss, and the trauma of all the surgeries I’ve had (all the pushing, pressure, etc. during surgeries) . He said he could do things to bring my eye forward but it would be a very invasive surgery and involve some reforming of my socket and cheek bones.

The third thing he covered was that I have a slight lazy eye due to my vision loss. A lazy eye is when the muscles weaken (in my case due to vision loss) and the eyeball drifts to looking outward, causing it too appear as if each eye is looking in a different direction. He said he could fix it, but my scleral buckle would complicate the surgery because it lays right over some muscles he would need to work on.

He said all of this was probably not noticeable to anyone. “In fact, you look just fine.”

“My family and friends say they don’t really notice anything with my eye at all. They think it looks pretty close to the way it always has.  But I notice it. It looks super obvious to me”

He went on to explain that he could do an ultrasound and CT scan to see if there is anything more he can learn, but in reality my issues aren’t even close to serious and I would be better off waiting and seeing if they worsen before I do anything at all.

In other words, it’s not worth it to do anything.

“You look good. I’m sure nobody notices it as much as you do.” He went on to suggest I look on the internet for makeup tricks that can make the eye look bigger, more open.2016-04-21 10.30.56

I completely understand where he’s coming from. I’m sure my insecurities cause me to be much more self-conscious than I should.

But when I look in the mirror or see current pictures of myself, I just can’t understand why nobody else see’s how massively different my right eye is from my left.

In the end I felt both better and a bit disappointed. I was reassured that I really don’t look bad, but nothing will be improved upon either.

Every time I see my own face now I think I look like the kid from The Oblongs, Milo.

Visions of Sleep

I had three medical appointments today. I swear I live at the doctor’s office.

Sleep Study

The first appointment was for a class on preparation for my sleep study tonight. Several of my doctors have asked me in the past if I have ever been tested for sleep apnea. Apparently I have a ton of risk factors. I never even suspected that I might have sleep apnea primarily because I rarely snore, and when I do it’s very quiet and doesn’t last long. But my new primary doctor thought it was worth testing, so here I am.

Symptoms of sleep apnea:

  • Snoring (usually loud and persistent)
  • Episodes of not breathing followed by gasping for air and/or snorting
  • waking a lot during the night (may be accompanied by shortness of breath)
  • waking with a dry mouth and/or sore throat
  • headaches (especially in the morning)
  • insomnia
  • sleepiness and fatigue during the day
  • trouble paying attention
  • moodiness

Risk factors for sleep apnea (obstructive and central types):

  • Obesity
  • large neck size
  • narrow airway
  • males
  • older persons
  • family history
  • drinking alcohol, using sedatives and/or tranquilizers, smokers
  • nasal congestion
  • Heart conditions
  • Using narcotic/ pain medications
  • stroke
  • Diabetes

There were four of us in the class. We first filled out a quick questionnaire that asked about risk factors and symptoms. Then we went over what sleep apnea is, how it works, what the test is for, and what the treatment is and how it works.  Then the technician showed us the test machine we were to take home, how it works, how to put it on and start it, and how to take it off.

I was a bit surprised when I saw the machine; I was expecting the same machine my husband had been tested with, the one you strap on your chest and have to lay on your back all night and can’t get up during the test. This machine I was being sent home with is like a huge watch you strap on your wrist with a finger shell (just like a pulse oximeter). I was happy to find out I can sleep just like normal (I hate sleeping on my back) and if I have to pee during the night it’s OK to get up.  WOOT!

2016-03-25 17.46.11
The sleep study machine you wear like a watch

Retinal Scan

My second appointment of the day was at ophthalmology for an eye scan in preparation for my first visit with my new retina specialist. This appointment was nothing special or new to me, I’ve had this same scan a million times. Just look straight ahead at the blue light and cross while they run the scan.  Of course they had to dilate my eyes first. The point of this test is to get good pictures of your retina.

Retina Specialist

My last appointment of the day was with my new retina specialist. He’s a nice guy, has a mildly comedic personality that sets you at ease. But most importantly he seems knowledgeable and willing to listen. I told him about my past surgeries, laser treatments, Avastin injections, etc.

“You get Avastin injections in both eyes?”

“Yes.”

“Do you want it in your right eye?”

I understood immediately why he asked this. I have virtually no vision left in my right eye and am fully aware there is nothing that can be done to improve this eye. It’s done, I know. I told him I really didn’t care either way about the injection in my right eye, but I know I really need it in my left.

He examined both my eyes and agreed I need Avastin in my left to keep it stable.

As he was examining my right eye he made a comment that made me smile a bit. “The doctor that did your scleral buckle did a great job.”  I smiled because it brought memories of Dr. Hunter, a truly excellent retina specialist.

“OK, then I’ll do the Avastin in your left eye now, and no more Avastin for your right.”

“Sounds good.”

He did the injection and asked to see me again in eight weeks for my next injection. Then he asked me if I had any questions. I did.

“I know my right eye has shrunk…”

“Yes it has…”

“Is it going to?…”

“No, it’s done, the oil will keep it from shrinking any more.”

“OK, so is there anything I can do about my droopy eyelid?  I know it doesn’t cause any problems but…for vanity’s sake…”  I’ve been reluctant to leave my house, and very insecure, because of my droopy eyelid (often called a “winking eye”). I used to be so proud of my big, bright, beautiful eyes, but now I just want to hide the right side of my face.

“I’ll refer you to a plastic surgeon.”

“Thank you.”

So on the way out I made an appointment to consult a plastic surgeon, and an eight week appointment for my precious Avastin.

2016-03-25 17.52.42
My right eye has shrunk due to retinopathy, causing a “winking eye”

Busy day, but all good.

 

 

Another Poke

Every eight weeks I submit myself to a certain kind of torture. Just kidding, it’s just an eye appointment I have to go to every eight weeks. I have proliferative diabetic retinopathy and it’s really bad. The only way I can keep it from getting worse is to undergo aggressive treatment.

Every eight weeks I go in to see my retina specialist. They give me a quick vision test, numb my eyes and test my eye pressure, then dilate my eyes and take a scan to get a good look at what’s going on inside. Then the doctor comes in and does a quick exam herself and lets me know how I’m doing. Lastly she gives me one shot of Avastin in each eye.

This time around, though, she let me know my left eye, the good one, is doing good still and we will keep up with the Avastin injections. But my right eye, (the bad one I have virtually no vision in anymore anyway), is being very stubborn and is still very angry (swollen) inside so she wanted to give me a third injection today.

“I know you have very little vision in that eye anyway, but we still want it to be as healthy as possible.” She said.

And I agree.

So that means I got one injection in my left eye, and TWO in my right…in one day.

She was quick and gentle as usual. I never feel the injection in my left eye, but my right eye is more sensitive these days because of all the surgeries and treatments I’ve had, and probably the fact that this eye is oil filled makes a difference as well. She did the Avastin injection and then had me wait a few minutes with my eyes closed before she returned and did the steroid injection. It still hurt a bit, though, and I let her know it felt as if the pressure  in my eye increased a lot. She had me wait a couple more minutes then tested my pressure to make sure it wasn’t too high. It wasn’t

She let me know we’ll keep doing the Avastin in each eye every eight weeks and now we’ll also be doing the steroid every four months or so.

Oh, yay…

 

The Slow Path to Blindness

I had my regular every eight weeks eye appointment today. I have proliferative diabetic retinopathy in both eyes and have been on a journey full of eye appointments, surgeries, laser treatments, and injections for almost two years now. The point is to try to preserve what vision I have left.

2015-10-21 11.35.19
Post eye visit

The appointment went as usual, vision test, numbing drops, eye pressure, dilation, wait, eye scan, wait, more numbing drops, numbing gel, wait with eyes closed, then the doctor came in and she informed me that my right eye is swelling more. We aren’t too worried since my right eye is so far gone already that I can’t see more than light and movement anyway, but we do want to save that much, so she suggested I start to use steroid drops and we’ll see if that helps the swelling. And instead of Avastin injections every eight weeks in that eye, she suggested using a more aggressive steroid injection every four to six months.

I said why not.

As for my left eye, the only good one I have left, she was happy to report that it is holding steady but since I reported that the tiny blind spot began to show again as of yesterday, she suggested continuing to have the Avastin injections every eight weeks in that eye.

I said why not.

After a quick exam she made her final notes and OK’d the steroid prescription. Then she gave me my injections in each eye.

She said she was glad I still have good vision in my left eye and there is no reason I can’t do anything I want in life, except be a surgeon. I said I am thinking about eventually getting my driver license back and she said there is no reason I can’t drive. I replied that I’m just not comfortable because my depth perception and peripheral vision is so bad I run into walls and have trouble with stairs, etc. She said that will improve with time, it just takes time.

I really like this doctor because she is very kind but doesn’t hold back the truth. She doesn’t beat around the bush about letting me know my vision will only continue to deteriorate from here on out. The aggressive treatment is simply to slow it down as much as possible.

I’m not saying that everyone with retinopathy will end up blind eventually, I’m am only speaking about my individual case. I am so far gone that there is no stopping it and definitely no reversing anything.

I can still have good vision for many years to come. There is no reason to get depressed at this point, although I do get weary with all the eye exams and injections. But that is a small price to pay to preserve what I have for as long as possible.

And who knows, while I’m working to preserve a new and miraculous treatment (cure) might be found. 😛

Avastin Restores

Avastin is an injected medication administered to the eyes. Yep, they literally give you a shot in your eye(s). For me this is done every eight weeks in both eyes. The reason for this is because this drug helps to keep swelling down as well as helps to stop the growth of new blood vessels which is something bad that happens with retinopathy and macular degeneration. In Diabetic Retinopathy the tissues of the inner eye can become inflamed and swell causing further damage and threatening your vision, also tiny new blood vessels grow and cause problems as well.

I’m here to tell you that it works. Avastin has proven to help keep me out of the operating room and has helped me to keep what vision I have left. In fact, as of my appointment yesterday my vision has improved a bit, a total of 15% combined in both eyes!

I have had a total of four Avastin injections in each eye over the past year. The positive results began immediately, but I hadn’t noticed much until this last month. With my last injections eight weeks ago, at that time I had been suffering from a small blind spot in the center of my left (only good) eye. About a week after the injection I noticed the blind spot was completely gone. The doctor had told me the blind spot was due to a small amount of swelling in the tissue at the center of my eye.  The Avastin successfully remedied the swelling and my vision improved.

If you are thinking you might need injections in your eyes at some point, don’t fear. I know it sounds completely freaky but if you have a good, gentle doctor like mine, you won’t feel a thing. They fist put a ton of drops and ointments in your eye to numb and disinfect. You are left to sit with your eyes closed for a couple minutes to let the medications take full effect. Then the doctor puts even more stuff in your eye and then the injection comes which takes literally half a second and you don’t feel a thing. Then they rinse your eye thoroughly and put in more antibiotic ointment and you are done.

The only discomfort I ever feel comes later when the numbing agent wears off. My eyes become dry and scratchy. I’m told this is due to the antibiotic ointment and not the Avastin. This discomfort only lasts a couple hours and isn’t all that terrible.

I know these injections are outrageously expensive; another patient I spoke to says his insurance doesn’t cover it at all but he relies on it to keep his vision so he pays $2, 000 out of pocket every eight weeks!  I’m glad my insurance covers it.

Avastin is by no means a cure for anything. It is used as a tool to help keep the condition from progressing and doing more damage. And as I said, it does help to improve things a bit. But sadly, if you do not continue to have regular injections the problem will most likely begin to progress again.

At this point for me it’s either regular injections and keeping my BG’s under control, or getting full eye transplants or bionic eyes!

I’m sure there are risks involved with this medication, as with any medication or treatment, but I have not suffered any.

avastin

Not Good, Not Bad

I had an eye appointment today. It’s been six weeks since my last visit, which was a laser treatment in my left eye. Today was supposed to just be a regular checkup to make sure the laser helped and that my eyes were not having any troubles. Well, things didn’t go as hoped. Why am I not surprised.

First I had a regular vision exam, then eye pressure ( 8 in my right, 11 in my left), and finally some dilation drops. Not long later I was taken into another room to have the same old scan done of my eyes so the doctor could get a good look at the inside. then I waited in the waiting room to be called in to see my retina specialist.

When she came in to talk to me, after pleasant greetings, she jumped right into the bad news. Both my eyes are having swelling problems. This has a bad result on my vision. My right eye has almost completely been written off as far as aggressive care goes. There’s really nothing much more that can be done since my vision is so poor and there is no hope of it ever getting better. My left eye has very good vision and we want to keep it that way, but the retinopathy is trying really hard to ruin that. So, she suggested doing Avastin injections in both my eyes to lower the swelling. I’ve had these done before, so I knew what she was talking about.

“You’re probably going to need the injections every couple of months indefinitely. We’ll do them today, if you’re OK with that.”

I was fine with it although I was not looking forward to it. These injections don’t hurt going in, but they always leave my eyes dry and irritated for the rest of the day.

While we waited for my insurance to OK the injections, my doctor asked me about the blind spot I said I had in the center of my left eye vision. I pointed to a vision chart to show her exactly where it was. She matched it up with the scan of my left eye and confirmed that I have swelling in that exact spot. She then examined both my eyes while the nurse made lots of notes for her.

By this time the insurance still had not replied with the injection go ahead, so we talked some more. She just went over the fact that she didn’t want to do surgery or too many more laser treatments unless it became more urgent.

“The injections should keep things under control for now, and we may need to do more laser treatments down the road if you continue to have micro-hemorrhages. But we’ll wait as long as we can.”

I am glad she doesn’t want to be too aggressive since this is my only good eye and there is risk with the aggressive treatments. I just hope she doesn’t wait too long to decide when an aggressive treatment is needed.

Finally my insurance gave the go ahead and she did the injections in fast and virtually painless fashion.

“OK, I’ll see you in eight weeks and we’ll see how things are going.”  She said with a smile.

I thanked her and walked out to make my next appointment and go home.

Now I sit here at home typing this up even though my vision is super blurry and my eyes are dry and burning with scratchiness. At least I still have my vision in one eye. Here’s to working hard to keep it!

The Things We Do For Love

Today is my husband’s birthday. I find myself wanting to share with the world how very special he is. Hubby is one of those men that you just don’t find very often. The kind of man who gives and expects nothing in return. He sees someone he cares about in need and gives his all to help.

How did I get so lucky?

Let me tell you the story of what happened yesterday. Hubby took the day off from work because it was a Monday and he wanted a three-day weekend as his birthday gift to himself.  I didn’t want to ruin his special day off but I had an eye appointment. He took me up to Fresno (30 minute drive) and we ended up waiting in a packed waiting-room almost an hour past my appointment time. He was impatient; I could tell even though he tried to hide it.   I kept telling him he didn’t have to wait with me, he could go have fun somewhere and I would call him when I was done. But  he didn’t want to leave me alone.

Finally I got called in and my appointment was over in less than 30 minutes. The plan had been to go to the grocery store after my appointment and then go home. My blood sugar had been running low all morning and the long appointment wait hadn’t helped, it pushed lunch time back. We had planed to do our quick shopping and then go home to eat, but now we decided to get something cheep first.

My eye appointment had been a laser treatment in my only good eye. I have had this very same treatment before and left the doctor’s office with no trouble. This time it was different. I was in pain. I felt like my eye was being stabbed repeatedly with needles and throbbing so bad I felt it would explode. The pain seemed to be subsiding, though, so I just kept my eyes closed to keep out the very bright sunlight.

We stopped by Wienerschnitzel because that is what Hubby wanted, and we hadn’t eaten there in a very long time. I was pleasantly surprised at how good the food was.

Hubby suggested we just go home because my eye wasn’t doing well.  I refused and insisted we go to the grocery store he wanted to stop at. 1. It was what he wanted for his special day. 2. I wanted to pick up ingredients to make his favorite meal on his birthday.  So we headed over there.

As soon as we stepped into the store my eye began to hurt bad again. My eye was tearing profusely and my nose was running like an open tap.

Hubby said, “OK, let’s just go home, you’re in pain.”

“No, no, let’s get the tater tots and soup and then go.”  I was determined to at the very least be able to make him the meal he wanted on his birthday.

We got the ingredients. I had to stop and rest my head on the cart handle for a moment. I was sure my eye was going to burst open soon.

“OK, that’s it, let’s just go home.”  Hubby said.

“No, the checkout is right there, let’s just pay.”

We paid and got back to the car.  I had to lay back my seat and lay on my side with my hair covering my face to block out the light in order to be even remotely comfortable. I am shocked that I actually dozed off on the way home.

When we got home I tore off my clothes and lay in bed  with the curtains drawn tight and the light off.  Hubby found my old bottle of Hydrocodone pills from an old eye surgery. I popped one and promptly fell to sleep despite the agony. Not long later I woke up and puked, then went back to sleep.  I think I slept for over four hours.

Hubby had left to go hang out with a friend, but not before checking on me a couple of times and making sure I had glucose tabs next to me in case of a low blood sugar, and some water, and my phone.

Later that evening I woke up to the sounds of him playing Call of Duty.  I smiled a bit.  At least he had got to visit a friend and play video games on his special day off.

I tell you this story because I want you to know how much my husband sacrifices and goes through for me on a regular basis. Although I often feel guilty and sad for everything he has to go through.  He’s not the sick one with so many complications of diabetes. He doesn’t have to go through this.

But he does it.  Because he loves me, he cares.  He is a special kind of human being.  A very rare breed.

I love him so much.  I could never survive without him. My gratitude knows no bounds. 87c37

I’ve Been Here Before

Everything I went through with my right eye is now happening to my left.  I’ve known this for awhile but hoped it would stop progressing once I got my diabetes under control.  I guess because it is so far progressed, there is little hope of it stopping on its own no matter how well I control my diabetes.

Some complications of diabetes can be “reversed” if caught early enough and improvement in diabetes and overall health is made.  In some circumstances, though, the damage is done.

For me and my eyes, I neglected my diabetes for too long and developed proliferative diabetic retinopathy.  I went many years without health care and was unable to get the treatment I needed so my eyes continued to deteriorate.  When I finally was able to get health care again (which obviously included eye care) I was at the point of needing surgeries in my right eye and laser treatments in my left.  I have gotten my diabetes under good control and am getting better every day, but for my eyes this doesn’t mean much now.  Obviously the better I control my diabetes the less the damage will progress, but in some respects the future doesn’t look all that bright or clear.

When I went to the ophthalmologist in early 2014 they did a full exam. Scans, pictures, tests, exams, an  I.V. that injected dye into my bloodstream so they could get nicely contrasted pictures of the tiny blood vessels in my eyes.  The whole nine yards.  None of the tests and scans were uncomfortable or painful int he slightest.  There were just a lot of them.

At this time I confirmed what I already knew.  My right eye was really bad off and my left wasn’t too far behind.

I had a steroid injection, four surgeries (gas, oil, scleral buckle, vitrectomies, lens replacement, etc.), tests, treatments, lasers, medications, exams…all in one year’s time on my right eye.bw7

During this same year I had tests, scans, exams, and laser treatments done on my left eye.

All the while I’ve been working hard on getting my diabetes and overall health in line.  I’ve dropped my A1c considerably and it is still coming down, I eat healthy the vast majority of the time although I still struggle with the occasional bad decision (we can’t all be perfect all the time, but we try). I exercise a minimum of five days a week and am always working on increasing my activity level to maximize my physical health.

Today I went in for an eye check-up. My retina specialist informed me that there is very little left that can be done for my right eye.  Basically it’s just a “maintaining what is left” game now. I’m stuck with what I got left there which is just being able to perceive light and movement.

She then informed me that I need more laser surgery on my left eye because there are more blood vessels sprouted and some micro-hemorrhages. I also need a steroid injection in that eye before the laser because there is some swelling that will only be aggravated by the laser.

“Our aim is to do everything we can to avoid having to do surgery on your left eye.”  Of, course she was referring to invasive surgery, not laser.

This was my favorite thing to hear from this doctor. I really don’t like the idea of more surgery.

Of course the ultimate goal is to save what’s left of my sight.