gramma
Pearl Clutcher
Posts: 2,903 
Location: Sacramento, Ca
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Post by gramma on Aug 29, 2015 1:29:59 GMT
Heading to LA in about an hour to see a specialist about son's eye condition. Please please please it has not advanced so far that a corneal transplant IA the only option
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Post by Spongemom Scrappants on Aug 29, 2015 1:33:42 GMT
I was not familiar with that diagnosis and had to google it. I take it your son is relatively young? I'm sorry he's facing such a situation. Is it just in one eye or both?
Anyway, I do hope you get good news at the specialist's office.
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Post by gailoh on Aug 29, 2015 1:34:42 GMT
prayers and hugs
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Post by disneypal on Aug 29, 2015 1:39:58 GMT
Will pray.
Just a question for you....has you son ever been fitted with gas permeable contacts? I was diagnosed with karatoconus several years ago in both eyes (also was told may need cornea transplant) and my eye doctor said...let's try these just to see...we tried for 6 months and had about a 50% improvement...a year later, it was about 90% better. The hard contacts kind of pressed on the cornea an pushed them back into shape.
If he hasn't tried that, you may way to discuss with his doctor before taking more extreme actions...it is worth a try.
Keep us updated.
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Post by coffeetalk on Aug 29, 2015 1:41:00 GMT
Hoping for a good outcome for your son. Hugs, Mom.
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Post by Linda on Aug 29, 2015 1:51:58 GMT
prayers
if he does end up needing a corneal transplant - my dad had a double corneal transplant in 1945 (due to war injury) when they were still fairly experimental and it was really successful for him. He died in 1989 and he never had a problem with his eyes in all that time.
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Post by elaine on Aug 29, 2015 1:54:14 GMT
You can also tag burningfeather, as she has had cornea transplants too. |
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sakura
Junior Member
Posts: 55
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Post by sakura on Aug 29, 2015 2:10:45 GMT
I have keratoconus in both eyes, wear rigid gas permeable lenses, had a corneal transplant in my right eye 9 years ago and had crosslinking done on my left eye last year. The crosslinking involves riboflavin drops being put in your eye and then the drops are activated by a special light. The crosslinking stabilizes the cornea and basically insures that a corneal transplant will never be necessary in that eye. (Sometimes the crosslinking reverses the effects of the keratoconus.) I live in the So Cal area so if you need any doctor recommendations or anything at all, please let me know. I know how scary the diagnosis is (I was diagnosed 21 years ago) but the technology has come so far.
Susan
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gramma
Pearl Clutcher
Posts: 2,903
Location: Sacramento, Ca
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Post by gramma on Aug 29, 2015 2:49:59 GMT
Sitting At THE Airport now. He is 43 (yes that makes me old) and was diagnosed 15 years or so ago. He's progressed through many sets of gas permeables. We are seeing Dr Brian Boxer Wachler who is supposed to be a leader in this procedure. I think we are both nervous.
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newlywoods03
Pearl Clutcher
Blessed Beyond Measure
Posts: 2,828
Jun 26, 2014 3:09:09 GMT
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Post by newlywoods03 on Aug 29, 2015 2:52:19 GMT
I will be praying!
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Post by ~KellyAnn~ on Aug 29, 2015 2:55:30 GMT
Saying a prayer for your son and his doctor. (hugs)
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Post by worrywart on Aug 29, 2015 3:54:52 GMT
Praying for a successful meeting with the doctor!
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Deleted
Posts: 0
May 17, 2024 6:27:20 GMT
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Post by Deleted on Aug 29, 2015 4:18:09 GMT
I hope that he has a good report, but I'm here to tell you that corneal transplants are really pretty simple and other than having frequent checkups and becoming best friends with eye drops, it's honestly not that big of a deal. I had mine about 10 and 11 years ago. I was in the hospital by 6 a.m. and out by noon. We stopped to eat out on the way home. Of course I had to protect it for quite some time with a guard and even after that I found it more comfortable to wear a patch because of the difference in vision between my eyes (and honestly, if you are wearing an eye patch, people are more careful around you).
The biggest tip I can give you is that there are very, very frequent check ups for the first year or so, so you don't want to have to fly to all of the appointments. You are going to want someone local or relatively close driving distance. There's more advice too if it comes to it and feel free to send me a message if you like, but I really just wanted to say that there is absolutely no need to be upset or get freaked out about it. Rejection rates are very low, they last 10+ years, and as of right now, corneas are pretty plentiful (because they can be kept longer than other organs/tissue).
It's a breeze. Really.
(I have retinal tears, a macular pucker, glaucoma, transplants in both eyes, and have an ongoing war currently with uveitis. I've also had cataracts, which are common because of the steroids. Since your son has keratoconus, he's probably very, very familiar with lots of different types of eye care so the transplant really will be familiar ground for him.)
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Post by destined2bmom on Aug 29, 2015 4:31:22 GMT
Prayers being sent to you, your son for a positive outcome!
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gramma
Pearl Clutcher
Posts: 2,903
Location: Sacramento, Ca
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Post by gramma on Aug 29, 2015 6:06:48 GMT
Thank you thank you. We will know more in the morning. Appointment is at 9AM
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Post by heartland on Aug 29, 2015 6:22:40 GMT
(((Hugs)))
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Deleted
Posts: 0
May 17, 2024 6:27:20 GMT
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Post by Deleted on Aug 29, 2015 8:31:29 GMT
Sending positive thoughts for the best possible outcome and your peace of mind.
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anniebygaslight
Drama Llama
I'd love a cup of tea. #1966
Posts: 7,394
Location: Third Rock from the sun.
Jun 28, 2014 14:08:19 GMT
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Post by anniebygaslight on Aug 29, 2015 8:49:22 GMT
Sending best wishes.
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happymomma
Pearl Clutcher
Posts: 4,078
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Post by happymomma on Aug 29, 2015 8:53:07 GMT
Sending many positive thoughts your son's way.
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Post by KelleeM on Aug 29, 2015 10:17:18 GMT
I hope that he gets good news. So glad the BF posted to ease your concerns about transplants  I love this place! |
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eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on Aug 29, 2015 11:00:06 GMT
Positive thoughts being sent.
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Peamac
Pearl Clutcher
Refupea # 418
Posts: 4,218
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Post by Peamac on Aug 29, 2015 15:14:23 GMT
Wow! The Refupeas really do know everything! I'd never heard of this condition either, yet so many Refupeas have had experience with it. Y'all never cease to amaze me!
(((Hugs))) and prayers for you both!
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Deleted
Posts: 0
May 17, 2024 6:27:20 GMT
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Post by Deleted on Aug 30, 2015 0:32:49 GMT
I've added a photo (black and white) of my eye about 24 hours after my first transplant. I don't think it's graphic or gross but I'm putting it in a spoiler just in case (It's just a close up of an eye and shows stitches). There aren't a lot of photos out there that really show an eye immediately post transplant. I'm not sure how he managed, but my husband took it with his cell phone. You can see the stitches (I still have some, 10 years later) and you can also see the edges of the new cornea. |
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Post by AussieMeg on Aug 30, 2015 1:07:49 GMT
gramma I hope everything goes well for your son. burningfeather wow, what an amazing photo! I am amazed at the intricacy of the stitching, and how the doctors do that.
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Post by Blind Squirrel on Aug 30, 2015 1:15:31 GMT
Prayers sent!
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Deleted
Posts: 0
May 17, 2024 6:27:20 GMT
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Post by Deleted on Aug 30, 2015 1:22:19 GMT
gramma I hope everything goes well for your son. burningfeather wow, what an amazing photo! I am amazed at the intricacy of the stitching, and how the doctors do that. I know, right! My doctor was in Chicago and he is a master at this. We've since moved to Dallas and I've seen a couple of other eye care doctors for other issues that I have (not related to the transplant) and they all comment every time what a fantastic job my doc did. I had a scare a few weeks ago and thought I was rejecting, but it turned out to be an infection of the inner layer of the eye and at the same time, something like a piece of lint had gotten embedded underneath a stitch and made it look like the edge of the cornea was turning white. It's always going to be a worry and corneas don't last forever, but having a repeat transplant is not something that I look at with dread. A cornea transplant is a long, long road, but it's not a hard road. |
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Deleted
Posts: 0
May 17, 2024 6:27:20 GMT
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Post by Deleted on Aug 30, 2015 1:30:11 GMT
Praying!
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gramma
Pearl Clutcher
Posts: 2,903
Location: Sacramento, Ca
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Post by gramma on Aug 31, 2015 15:07:52 GMT
The weekend was a success. He had two procedures done that will virtually stop the keratoconus. When technology and medicine meet in the hands of an expert really amazing things happen.
I was apprehensive about the whole thing, these are eyes after all. He had been told that the doctor was probably a "super star" who would be arrogant and push the procedures on him. He has also been told that the only option was to wait until his vision was bad enough that he would need a transplant. Dr Boxer Wachler was very kind, was not at all arrogant, rather very patient and kind. He actually recommended only two procedures not all 3.
We are very relieved in this family.
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smartypants71
Drama Llama
Posts: 5,710
Location: Houston, TX
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Post by smartypants71 on Aug 31, 2015 15:38:33 GMT
So glad things turned out the way they did! Great news! |
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