Fuchs’ Corneal Dystrophy: Vonnie’s Story – Part Two

This is what I look through everyday

This is what I look through everyday

Update: Corneal Rejection and New Symptoms

I’ve had lots of changes in my life since part 1 of ‘Fuchs Corneal Dystrophy – My Story’. After living in South Florida for 13 years, I moved back to Central New York in June (see post). It’s been quite an adjustment between getting used to the weather, which I love by the way (until winter), to reconnecting with old friends and family that I haven’t seen in years.

While my living situation is falling into place, I’m sorry to say my vision is deteriorating once again. Two years after the second partial corneal transplant in my right eye I’ve recovered from several near and total cornea rejections (I guess from having such a great immune system) and now I sit here writing this post using my ‘good’ eye to view the screen. The sight in my right eye has reverted back to before the transplants.

I made an appointment with Dr. Robert Arleo, a reputable ophthalmologist in Ithaca who did several tests and immediately referred me to Dr. Robert Weisenthal in Syracuse. Unfortunately, I couldn’t get an appointment until August 25, so I’ve put myself on a regimen of Prednisolone (steroids) eye drops and Muro 128 drops and ointment.

Dr. Arleo seems to think I should have a ‘full’ corneal transplant this time round, but we’ll have to see what Dr. Weisenthal thinks. Thoughts of undergoing another transplant and possibly another lengthy recovery period makes me nauseous, but I have to consider myself lucky to have an eye condition has options other than total blindness. Some people don’t have choices.

I’ve been gathering as much information online as before I see Dr. Weisenthal on August 25th. Knowledge is power, right?

The Fuchs Dystrophy site as helped me tremendously, especially, Dorothy’s Story, written by a woman who has logged her entire ‘Fuchs’ experience online. I wished I’d done that.

Dorothy’s story has confirmed many problems that I’ve since my transplants. Her systems were before her transplant.

1. Napping.

2. Bending over (i.e., gardening, cleaning, etc.)

3. Crying. This is the worst because it’s very depressing to lose sight in your eye. Sometimes it’s worth crying about.

4. Hot, humid and rainy days.

I’ll post again after my doctor’s appointment on August 25th, but in the meantime, if you have FUCHS’ Corneal Dystrophy or are experiencing symptoms, please feel free to comment. Also visit the Fuchs Dystrophy site to find out more about symptoms and options.

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Moving to another state? Six reasons to hire professionals

Man covered in cardboard boxes - moving conceptI’ve neglected my blog in the last few months. Why, you ask? My sweetie and I have been moving from South Florida to Central New York and I won’t beat around the bush, we’re damned exhausted.

If I’d realized just how draining both mentally and physically this move was going to be I would have done things differently. Way differently! Instead of thinking a 61 year old woman and her 69 year old spouse could handle the daunting transition of moving 1300 miles on our own, we would have hired people. Lots of professionals to do things such aaaassss -

  1. Packing, delivering everything to my new front door, then unpack for me and make my bed so I could hop in as soon as I arrive.

  2. Shipping our car instead of us driving up the east coast with dreams of being tourists. “Oh this will be an exciting drive. We’ll stop and see sites along the way, enjoy new food, learn something new about the states we drive though.”We toured Savannah, but once we left Georgia, we stopped at Marriott Hotels that were close to I95, ate at the bar and went in bed by 8:00PM and not in a romantic way. At least we acquired some good Marriott points when (or if) we ever travel again.

  3. Dealing to the DMV to register our car, change our driver’s licenses, etc. and handle with individuals at the counter who say, “New York State laws require…” I’m sure professionals would not have walked out of the DMW sobbing with exhaustion.

  4. Stocking our new home with food, cleaning supplies, paper goods, what have you instead of taking 15 trips to the store to pick up things like a spatula to fry the eggs we bought earlier or a bowl and spoon to hold our soup. This experience has turned me into a meticulous list maker.

  5. Helping decide on furniture, colors, fabrics, and measurements. These professionals would need to be strapping young people who carry their own tools and bring their own step ladders, you know, like the ones you see on the HGTV. If I’d known how frustrated and exhausted we’d be, I would have spent money to hire decorators even if I had to take our a loan. But, hind-site is 20-20, isn’t it?

  6. Hooking up the computers, printer, phones, and the TV and avoid the hassle of talking to ‘technical support’ for hours and hours and hours.

Unfortunately, we didn’t hire any of those wonderful people and that’s why after a month in a half, I swear I’ve aged 20 years. I don’t want feel like an 81 year old until I am actually 81.

The good news, I’m a Northerner again living 30 minutes from my son and loving the gorgeous views of the Finger Lakes region. I’ve missed it. Of course, I’ll be missing Florida in mid-February. I found an article called The Uncertain Certainty of Moving on Huffington Post, so I don’t feel so alone in my exhaustive and confused state of mind.

If any of you have a big move coming up, I suggest you consider hiring professionals if you can afford it. If not, ask your kids to chip in, you’ll be glad you did.

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Fuchs’ Corneal Dystrophy: Vonnie’s Story – Part One

The Diagnosis and Corneal Transplant

In 2012, I was diagnosed with Fuchs’ corneal dystrophy (Fuchs), an eye condition I had never heard of before in my life.  I’d like to share my story.

English: A human eye that received a cornea tr...

English: A human eye that received a cornea transplant. (Photo credit: Wikipedia.

According to the Mayo Clinic, “Fuchs’ dystrophy (fooks DIS-truh-fee) is an uncommon, slowly progressive disorder that affects the cornea — the transparent front surface of your eye. Fuchs’ dystrophy is a type of corneal dystrophy, a group of conditions that may cause a hazy deposit to build up over the cornea.”

My optometrist first recognized that I had Fuchs when I went to see him for cloudy eyes. To give you as description, it was as if my right eye was steamed over like a windshield. I thought it was eyestrain. I was wrong.

From there, the optometrist referred me to a corneal specialist who confirmed the diagnosis as Fuchs. He prescribed me with over-the-counter eye drops called Muro 128, which is basically sodium chloride. This helps dry out the cornea to slow down the leak, which causes the cloudiness.

After two weeks of using Muro 128 eye drops every hour on the hour, the specialist told me that the only cure would be a corneal transplant because there is no cure for Fuchs.

It would continually get worse, but it could take days, months or years. However, he would not do a transplant until I went totally blind. Wrong answer.

At that point, I did consider myself totally blind in the right eye unless I used the Muro eye drops every half hour during my waking hours. I also wear glasses, but the right eye prescription was totally wrong by this time.

So, after two months of carrying Muro 128 eye drops in a tiny pouch around my neck, constantly putting in eye drops, I decided it was time for another opinion.

I found a young, enthusiastic ophthalmologist named Dr. Albert Caruana at Cleveland Clinic Florida who specializes in corneal transplants. I say “young and enthusiastic” because as I get older, the doctors look like kids to me, but in my case, I was happy to find a doctor that was almost right out of medical school.

Dr. Caruana did the corneal transplant within a few months. It was a simple day surgery followed by check-up appointments after the first few weeks. I’ve followed his instructions to the letter.

I felt it was only a matter of time before I was able to get the corrected prescription for my eyeglasses and move on with my otherwise healthy life.

Unfortunately, five months after the surgery, I woke up one morning with no sight in my right eye. I couldn’t see color, only black outlines of people and total blur.

I rushed in to see Dr. Caruana and he informed me of the good news and bad news. The good news was that I have a very healthy immune system. For a 59-year-old woman, that’s always good news.

But the bad news was that my immune system was rejecting my new cornea. My question to him was, “Now what?”

It’s been two weeks since the rejection. I’m on medication and once again the Muro 128, but my sight has not returned yet. I may need to have another corneal transplant, but the doctor is hoping the meds will help.

While the corneal transplant has been more of an ordeal that I had ever expected, I don’t regret having the surgery. I work every day to maintain a positive attitude and have full trust in my doctor, which is essential when having this type of procedure.

If there’s a possibility that you may have Fuchs’ corneal dystrophy, don’t wait. Make an appointment with an ophthalmologist who specializes in corneal conditions.

Originally published on Empowher

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Confessions from a Couch Potato

So, I rolled out of bed this morning with the usual stiff neck, sore back, and an unexplained cramp in my lower intestine.

I looked in the mirror and saw an overweight, old woman with the pallor of an upstate New Yorker in mid-February staring back at me.

Then I said, “Hey, you live in South Florida, you work from home, and you have a beautiful pool across the street that’s highly unoccupied. What’s your problem??

Depression sneaks up on you. Sometimes you don’t recognize it. You think you’re just being lazy and it’s easier to just lie on the couch and watch TV.

But it’s that scared, yucky feeling you get in the pit of your stomach, the tight ball that won’t allow you out of your comfort zone. You know the feeling.

But, if you push yourself or ask somebody else to help push you, you can do it. You can get off that couch, get out of the house, and once you get out there, you feel good, like you’ve accomplished something.

Couch Potato

I’m 30 pounds overweight and mushy brain. And as you read above, I don’t have any excuses

So, I got my hiney over to the pool this morning and did 25 minutes of water AEROBIC exercise. Yay me!!

I feel like I can do anything now, even finish writing a novel that I put away in 2008.

Yep, I’m doing this thing. How are you doing today?

 

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