Wednesday, January 20, 2016

A Time for All Seasons---Glaucoma and Corneal disease




I am writing a short  long post to catch up.

A new year

2016

 I really can't believe it!

Many of you that have followed my blog for a while and the closest of friends know for the past 5-6 years I have been on a journey with glaucoma. It's not something I would wish on anyone for sure.
I was diagnosed at a simple Walmart eye exam about 6 years ago and also had a hemorrage near the retina.

I thought things were getting blurry because I needed new glasses. On yeah, "I'm getting old!"

 My readering glasses from Walmart were doing fine actually. However, the digital picture they took identified "cupping" of my optic nerve in the left eye which was very slight and early. I was so glad they identified it early as I started on eye drops for glaucoma. I still did fairly well in my profession and with stitching and knitting and life goes on.

So for 5 years I went to the same general eye doctor every 6 months as I had to have a medical exam for the glaucoma. They explained it as a "CT of the back of the eye to get a picture of the optic nerve and for any damage".  Four years ago, the optic nerve started to become damaged. I still didn't notice anything in my eyes different with exception that the corneal scar on my eye (they found that at the first exam as well) was becoming more apparent with pain. At first this was like having an eyelash in my eye all the time. This progressed to severe pain this past year like having an ice pick stabbing my eye. The scar was getting worse. The scar was old and originally from a hit in the eye in my early 20's. The glaucoma meds and dryness has caused degeneration of the cornea over the years.

Zoom forward to this past March. I had an intense migraine right after a long trip. I went to cover my right eye and I looked forward and really got unnerved that many areas were totally blind. Just gone.
Like steamy fog on a mountain. You know the mountains are there but all the dense fog totally makes them go away.

I looked again. Blinked. This didn't change anything. Evidently my right eye had been taking over my vision and I can still function well but my optic nerve and visual field tests for the past 4 years were worsening. The general eye doctor referred me to a glaucoma specialist. It was at this point when I got my records I saw my failing tests every year but this generalist eye doc didn't take it too seriously.

This started the real brick that hit me that I was going blind in my left eye and it was a matter of time.
Since April of last year through October, I have had to see retina specialists and glaucoma specialist with pressure checks and many tests including a CT of the brain back in October to rule out a brain tumor. I was having headaches from the eye pain so bad.

I was then identified and told I had a Salzman's nodule on my cornea on that eye and I needed surgery. I had no idea what that was. I work in the medical field but eye issues were definitely not my specialty; however, when you are going blind, you learn alot about all kinds of things in the eyes.

CT showed no brain tumor. Headache behind the left eye would come 3 times a week like a brain freeze from eating ice cream and it would last 24 -48 hours. This increased. I was set up for surgery at the glaucoma specialist when they decided surgery needed an open OR room not out patient as my risks were too high in an out patient eye surgical center.  I continued to work in my profession through this entire time. I could see as my right eye now is dominant but the pain was identified then at Emory University as a corneal ulcer with corneal degeneration, advanced and advanced glaucoma in the left eye. They said at second look that it was not a Salzmans nodule but a corneal ulcer that was a much more severe problem.

The corneal specialist is very nice. The university is a big, busy place but all the drops, meds, everything was professional and options given. My husband has been through this with me and has been a good supporter. My parents also were concerned and aware of the pain I have been through.

On the day before Christmas Eve, I got an amniotic graft on my eye by a corneal specialist.
I literally was in bed with this prosthesis about the size of a quarter under my eye socket and praying that the graft woud take when they removed the prosthesis 3 weeks later.

I took 3 weeks off work for this procedure and had it removed last week. It healed the corneal ulcer but the glaucoma is fairly stable, but necessary now to look at other options for the glaucoma. So now I have a corneal specialist for the degeneration and they have set up in February seeing an attending glaucoma specialist at Emory for options. I returned back to work this week.

I still have some irritation under my lid where the device rubbed and still very sensitive to light but it was good to be back at work. I could not ask for any more sweet and understanding co workers and friends. The day before my procedure, they asked to say a prayer for me in a circle. I was so deeply touched in my heart and so thankful. The graft is from amniotic/placental donor tissue from a woman who had a C section. I had never heard of this and interesting to me because I'm a women's health practitioner.

The scar on my cornea will always remain and the specialist said I will have to wear a prosthetic clear scleral lens. I will be fitted for it in 2 weeks, it's sent to New York to be made and then I go back to get the device, learn how to put it in and take it out every morning and night.

The visual loss/blindness in my left eye is about 45% and is not reversible. I thank God every day for 2 eyes.

Until I got the graft procedure, I was knitting after work some at night and weekends but my pics are forthcoming. I do not write this for any pity AT ALL please but just to let those who follow my blog know why the gap in writing.

My corneal specialist is hoping and myself too that an ulcer does not occur again on the scar but she says that it probably is going to be recurrent. This is why the prosthetic device will hold my cornea and keep it from getting as dry too and maybe prevent this.

I have some limitations but mostly I'm doing well. The sun is probably the worst thing so I wear sunglasses alot. I love cloudy days now.

I'm very thankful I can continue in my profession and help others feel better. Being on the flip side is so very different!! I am also thankful for the corneal specialist. She listened and identified the problem right away. She was there when I cried about my fear of going blind. She is reassured with the graft the ulcer went away and is just a very understanding and knowledgable lady.

The next step on this glaucoma journey is next month. One day at a time.

I take one day at a time and I know that there is always a purpose for everything as God promises us but I also know we sometimes don't know why and may never know why these things happen. Coming to peace with that.

Amazing Grace how sweet the sound
that saved a wretch like me
I once was lost but now I'm found
was blind but now I see.

Twas Grace that taught my heart to fear
And Grace my fears relieved.


Thank you if you made it this far to read. :)
I have not forgotten my blog and all you who still take the time to read.
I will be back soon with a much better blog post and get back in the groove.

On the knit front.............just off the needles a scarf for my hubbie in the color Lake Tahoe
please excuse my picture. It's from my phone.

Actually picture one is the right color.


and this is finished and in a whole different light. LOL




It has not been blocked here. Definitely a simple, quite bulky alternating of stockinette and garter, easy on the eyes.


I plan to cast on my Christmas at Downton Lorna's Laces yarn REAL soon!!!!!!!!
I will be making a shawl.

Also will share a pic of part of my Christmas present in my next post.

I also will be having a blog sale in the next few months so stay tuned.

I hope this finds YOU all happy and healthy with the start of 2016!!!!

Jennifer

P. S. Miss Abbie sends her sweet love!

15 comments:

  1. I was just thinking about you a few days ago and now here is a post! I am glad you are doing okay, considering all you have been through with your eye. Prayers for you!

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  2. Sorry for the issues you are dealing with. One day at a time....

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  3. Jennifiter, I am so sorry this has happened to you! I will keep you in my prayers and I know that you are a strong person.

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  4. what a journey. glad you caught it. god is good. pretty pieces you have made. I hope it gets better as you go along.

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  5. Good Morning Jennifer, I have missed reading your blog. So sorry to read about your eye problems. My mom has had problems with glaucoma in her left eye. Her original ophthalmologist just didn't seem too concerned about her eyelid and eye looking swollen. He was wanting to refer her to a cosmetic eye specialist. We took her to another doctor to get an second opinion. He recommended a corneal transplant which was done in Nov. 2014. Her vision has not improved. She has lost most of the vision in that left eye. I think her eye doctor that she had been going to for so long just waited too long and now too much damage is done. I'm so thankful that she has good vision in her right eye. I'll be thinking of you and praying things will get better.
    Hugs, Phyllis

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  6. For those of us who work with our hands, eyesight is so precious. I think that losing my eyesight is one of my biggest fears -it's just not reversible. Hang in there and take care of yourself. Besides praying, let us know what we can do for you.
    Jackie

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  7. I am sorry to hear about your eyes but so glad you found a good medical center/specialist. I had a routine eye exam & was told I had the start of glaucoma. Went for a 2nd opinion which the doctor said "no". Who do you believe? Guess I will try a third Dr. Next year.

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  8. I have missed your blog and was wondering what was going on. I'm so sorry to hear about all your eye trials and tribulations, but so glad you have found good medical care and are on the mend. I'll look forward to more posts as you get used to your new normal. I'll keep you and Mr. Fox in my prayers.

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  9. Dearest Jennifer,
    That is quite an update and not a very happy one... We never know what lies around the bend!
    My husband Pieter had in 2004 the scare of his life when on August 24, his retina become detached. I had to take him to Macon since locally they couldn't help him. So we went to see the retina specialist but that young guy told us very frank that on Tuesdays he'd never missed his cycling afternoon and LEFT. Pieter was sweating because he saw less and less and thought he would become blind in that eye. Finally after hours waiting, the surgery got done and it didn't quite go well. It was not connected right and Pieter had to lie on his belly for putting pressure on his eye. Now, 12 years later, it is again getting detached and also he has more and more pressure in the eye. Since it got so messed up that in one eye he is far sighted and near sighted; creating a very ugly thick glass to be fitted into his eye glasses. They told him locally that surgery might help but since his eye was so complicated already, it might worsen and considering his open heart surgery and further heart cramps in January it might not be a good thing to risk more complications.
    Pieter was rather shocked by this... Such is life!
    I myself have had to live my entire life with only one functioning eye. I had a lazy eye but my Mom found me too pitiful standing in the play pen with one eye taped off (the good one) in order to force the other eye to function and for learning to receive signals to the brain. It is so crucial as that can only be achieved at a very young age. So she kind of took the healing chance away from me; unknowingly of course and back than, what explanation and guidance did the parents receive?
    But it is never easy, especially with sports it was always hard and I've been also scared for getting hurt in my 'one' eye. Driving a car for hours does wear me out. Next day I need to rest a lot for letting my eye recover from too much strain.
    Let's hope and pray that we will age with still enough eyesight for doing the things we love to do!
    Sending you hugs and well wishes for your further treatment.
    So happy you had all the emotional support at work and above all from your dear husband!
    Mariette

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  10. Have been reading and enjoying your blog for a few years. Sending you good, positive thoughts and hugs. I will keep you in my thoughts and prayers for a good outcome!

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  11. Oh wow. What a time you've been thorough! It's really scary to think of losing one's vision. Big hugs, Jennifer.

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  12. It sounds like you are in very good hands. I'm so glad you found this doctor. It sounds like you've found the best place to work too. I know that it must be hard to stay positive and upbeat but you seem to be both.

    Love your scarf and I know your husband must be enjoying it too in this weather. Are you getting lots of snow?

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  13. Jennifer: I am so sad you have had to go through so much, but you have God Husband and your Family by your side.
    I will say many prayers fore you.
    I love the scarf so pretty, I bet he loves it.

    Blessings
    Catherine

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  14. I sincerely hope that 2016 will be better for you. As we all get a little older......we realize that good health is so very important! I have had some health issues myself so I understand.I have an Uncle who has glacoma, he has injections. It has helped him quite a bit. God bless! Kerry

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  15. A big, big hug from Italy, Jennifer... I will remember you and Mr. Fox in my prayers every day. Let us know what will happen to you in the next months!
    Agnese

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Comments are welcome at the homestead at any time! I appreciate your time out of your day to stop and say hello!!
I hope you find some useful information and gentle inspiration for your day.
Jennifer