Has anyone had a cornea transplant?

[clifffaith]

My 82 year old mother has been miserable since the Thursday night before Memorial Day. She woke up in pain and with her left eye streaming. Saw her GP that day and again Saturday morning, then he sent her to the ER. Since then she has seen various types of eye specialists, one day she saw four doctors one after the other. Diagnosis was a corneal abrasion/ ulcer, and a culture showed mold as well. She is a gardener, but because it had been three days since she'd last been out digging, they don't quite believe she picked up something in the yard, although that is her theory.

At times the pain is so bad she can't sleep, other times she can't sleep because she has to take drops every half hour round the clock. She'll have four good days, then the pain comes back. Early on, on top of everything else, she had horrible headaches. She is blind in that eye and it turned white; she is extremely sensitive to light, even with both sunglasses and dark opthamolic glasses on. The last two weeks the doctor said it was looking better, in spite of again having nights she couldn't sleep, but today apparently it has taken a turn for the worse and they are talking corneal transplant.

For whatever reason the cornea specialist told her she'd get "minimal" eyesight back, and now she and my father are falling apart. We had just since Christmas convinced my 84 year old dad to stop driving -- he is so frail, slow moving and unsteady on his feet even with a cane that we can't imagine he has reflexes enough to hit the brakes quickly if he needed to. Mom was in excellent health before this and I think it has sunk in that she may never be comfortable or able to drive again. As we start to do online research we are seeing that corneal transplants have an 85% success rate, so not sure why the doctor is saying "minimal" eyesight recovery. I told Mom to wait until the referral comes through to see the surgeon, and we'll go with a long list of questions. If "minimal" means she can read again and the hypersensitivity to light goes away, Cliff, my sister and I can deal with the driving. I wondered if any TUG members have had experience with a cornea transplant.

 

[taffy19]

I am really sorry for you and your parents. I wonder how she got that so suddenly? Hope it will get better and she will keep her vision.

 

[clifffaith]

Thank you. On top of everything else she is now very depressed. Cliff and I have been scouring the Internet and found a "what to expect" from surgery pdf that will help her start to get her mind around the procedure.

 

[wackymother]

I am sorry your family is going through this--it sounds very distressing. I see a cornea specialist in Manhattan and he is very good about answering questions and discussing options. I suggest getting at least one second opinion. Even if your current specialist is correct about everything, he or she has not made the risks and benefits of the procedure clear to you and your mother. You shouldn't have to be hunting around on the internet for answers--your doctor should be able to answer your questions!

My only thought about your poor mother's corneal ulcer is to ask if she wears contacts? My cornea doctor found out that my daughter is wearing the new super-comfortable contacts, and he said it's imperative that she not fall asleep wearing them, even for a short time. He says he sees many, many corneal ulcers from contact lenses, especially now that the lenses are so light and comfortable. I know most 84yos are not wearing contacts, but I thought I would mention it just in case.

 

[clifffaith]

No contacts, just glasses for 75 years! I think she was so shocked to hear the words "cornea transplant" after she had been told her eye was looking better on her last two appointments, that she didn't ask any questions. Also she is being sent to another doctor, the one who will perform the surgery, for a consultation so we will have a list of questions. Also when she heard the words all South Bay dwellers dread, "West LA", all she could think about was that her drivers would now have to deal with west side traffic. Early on when they tried to send her to eye doctors in Los Angeles because they were "in network", my mild mannered mother told them there was no reason a large suburb like Torrance shouldn't have plenty of eye specialists on their list, she was over 80 years old and couldn't drive herself and would not subject her drivers (me, Cliff, my sister and a friend of almost 60 years who just lost his wife and loves having something to do) to a 60-90 minute struggle to get her to the doctor. Considering she went to the doctor three to four times per week for the first month, we are happy she spoke up.

I did not ask her if she thought about my brother when she heard "transplant". That was the first thing I thought of -- he took his own life 3 years ago, and the transplant people called from Texas trying to get the names for anyone who might have seen him alive the day before. We could not find anyone in time, and they were not able to harvest organs. (He was a school teacher and the next day we learned he had taught that day, a tragedy on many levels.)

 

[Panina]

I have no experience with a cornea transplant but have experienced major eye issues with mom and myself.

I can't stress this enough... Go for multiple opinions, insurance has always allowed us to. We each went to at least 6 doctors until we felt comfortable and understood all our condition, options and risks. We each ended up using the last Doctor we saw. For me I had different opinions on what I should do, diagnosis was the same. For mom, the First two doctors diagnosed her wrong, which ultimately made her eye condition worse losing vision.

 

[clifffaith]

Mom was distressed to hear her doctor say to the student who was shadowing him on Monday, "another doctor prescribed steroid drops; steroids are never given for cornea ulcers". That freaked me out, but then I guess I'm not too surprised. Cliff was once deadly bitten by one of the cats before he realized it was having a seizure in his lap. The ER doctor gave him a tetanus shot that Saturday night and sent him on his way. He came home from work Monday with his whole arm swollen and with red streaks going up it. Our urgent care doctor had a fit because antibiotics are ALWAYS given for a cat bite. They were going to hospitalize him, but ultimately decided to shoot him full of antibiotics and send him home that night pending an exam the next morning. We also soaked his hand hourly at home to draw out the infection, and by the next morning we could see improvement and when he saw the doctor later Tuesday it was determined he didn't need to be admitted to the hospital. If that doctor was true to his word, several doctors at the ER got an earful.

 

[wackymother]

No contacts, just glasses for 75 years! I think she was so shocked to hear the words "cornea transplant" after she had been told her eye was looking better on her last two appointments, that she didn't ask any questions. Also she is being sent to another doctor, the one who will perform the surgery, for a consultation so we will have a list of questions. Also when she heard the words all South Bay dwellers dread, "West LA", all she could think about was that her drivers would now have to deal with west side traffic. Early on when they tried to send her to eye doctors in Los Angeles because they were "in network", my mild mannered mother told them there was no reason a large suburb like Torrance shouldn't have plenty of eye specialists on their list, she was over 80 years old and couldn't drive herself and would not subject her drivers (me, Cliff, my sister and a friend of almost 60 years who just lost his wife and loves having something to do) to a 60-90 minute struggle to get her to the doctor. Considering she went to the doctor three to four times per week for the first month, we are happy she spoke up.

I did not ask her if she thought about my brother when she heard "transplant". That was the first thing I thought of -- he took his own life 3 years ago, and the transplant people called from Texas trying to get the names for anyone who might have seen him alive the day before. We could not find anyone in time, and they were not able to harvest organs. (He was a school teacher and the next day we learned he had taught that day, a tragedy on many levels.)

I am so sorry to hear about your brother. That is truly a tragedy for everyone, but I think it's hardest on the person's mother and father. I can understand how much it is on your mind and your mother's.

Regarding the driving--I know how stressful that can be. Have you tried Lyft or Uber? We live outside NYC and we've found that it's really helpful (and fairly affordable) for those long, unpleasant drives that you just dread, or trips to the doctor, or wherever. Also, it would free you or your friends and family to sit in the back seat with your mother and reassure her. If you haven't used it, look for a coupon code online that will give you a discount before you download it.