Refractive lens exchange

I've decided to go forward with surgery to correct my vision, and since an number of people are interested I want to post both the results of my research and my experience. So this is the pre-surgery post.

I'm a 56 year old woman with a prescription of: R -725 sphere -275 cylinder, L -600 sphere -300 cylinder. That is, I am quite seriously nearsighted, though not in the extreme catagory, and have very significant astigmatism. My vision is too bad to be fully corrected by Lasik. I have never worn contacts because I couldn't bear the thought of touching my eye.

If I were under 40 I would be waiting for the Visian Toric implantable contact lens to be approved in the U.S. Implantable contact lenses are lower risk than the surgery I am scheduled for, and should give the same quality of correction. But they aren't used over age 45 because of the risk of needing cataract surgery in relatively few years.

The procedure I am having is called Clear Lens Exchange or Refractive Lens Exchange. It is exactly the same as cataract surgery with the implantation of a corrective lens, but in my case I am having it done even though I don't yet have any signs of cataracts. I will have a monofocal toric lens implanted, which will correct my distance vision but leave me needing reading glasses. Most people who have such a procedure get a lens that does both distance and close up, but they don't yet make a lens for people with significant astigmatism that corrects both.  And I am not interested in waiting until one comes on the market because the multifocal lenses come at some compromise of sharpness of vision and clarity of night vision. I prize the sharpest possible vision more than not having to wear reading glasses. I am paying for this out of pocket--if I did have cataracts the insurance would pay for the surgery and simpler lenses. My total cost is around $3k per eye.

I had my pre-op appointment yesterday. The most serious risk in my situation is of retinal detachment--perhaps a 1% risk. That risk is greater for people who are nearsighted, particularly with a correction over 9, and for men and younger patients. The risk is less if the vitreous has already detached from the retina, but that is not the case for me. The doctor is at least confident that my retinas show no problems.

He said that 85% of their patients end up with half a diopter of normal, that is, they would have a prescription between 050 and -050. They did a lot of measuring of my eyes, which is very important to me because I really want that accurate correction. My eyes were different lengths so they did an ultrasound to confirm those measurements. It was hard to tolerate the ultrasound sensor on my eyeball even well numbed--I didn't realize that I tolerate the usual pressure measurement well only because it is so familiar. I am going to need that sedation for the procedure.

The two surgeries will be done 6 days apart, Dec. 22 and 28.  In between I will have to use only one eye, as my glasses make things smaller in a way that the lenses will not, so even if I popped one lense out of my glasses it would be too hard for my eyes to work together.

Posts in this series (reverse chronological order):
Eye Surgery Follow-up
Brain Adjustment
Second Vision Correction Surgery
The Week Between Surgeries
Day after Surgery
First Surgery
Refractive Lens Exchange

Orange Marmalade Cranberry Sauce

I only have one oven and I'm doing Thanksgiving (just for four) single-handed, so I'm cooking up a storm the day before Thanksgiving.  I got inspired and made a cranberry orange marmalade, starting from this recipe but with more cranberry.  I wanted something relatively low sugar--this is not a recipe intended for canning--but with fairly long cooking it did set.

Orange Marmalade Cranberry Sauce

2 good sized navel oranges
enough cider or apple juice to cover
2 cups sugar
1 bag cranberries

I removed the central pith and seeds from the oranges and cut peel and flesh together into thin slices.  I packed them down and poured cider over them to barely cover.  I put the bowl in the refrigerator overnight, as is recommended for marmalades.  The next day I measured the fruit and juice (I had 4 cups) and added half as much sugar.  I brought it to a simmer, added the cranberries, and simmered for perhaps an hour and a half. 

I thought it was going to have the bitterness that some marmalade has (which I like ok), but even the orange pieces that include the white part of the peel are not bitter.   It made about 3 cups.

child sexual abuse at Penn State

I'm very caught up in the Penn State story, though not to the point of having the stomach to read the indictment.  It seems to me very clear that children could have been saved from harm, and instead the program was protected.

To me, the legal issues are important because I think those of us at colleges and universities should know a lot more about our legal responsibilities.  I have seen contradictory information, but it looks to me like this article is based on actual research into the details.  Pennsylvania law mandates that school personnel report evidence of child abuse, but that reporting can be up the chain of command.  School administrators are mandated to report to the police, and they are the ones who have been indicted for failing to report.  That is not the case in most states, where school personnel are mandated to report directly to the police or child welfare workers.

So Paterno technically did fulfill his legal responsibility to report up the chain of command.  What is left is the ethical responsibility--harm was still being done, and he didn't act to stop it.  There is a really good article here that focuses on the comparison with the Catholic Church.  And an interesting story about the reporter who has been reporting the story for 6 months.

But the best thing I have read addresses the victims: Rick Reilly on the Penn State Scandal.

update 11/12.  A good story about our ability to act.

caregiving and having a life

What I find hard is becoming a little clearer to me as I recover from the stress of Friday's trip to the emergency room.  I don't have the energy or attention to do much this weekend and I feel low.  Part of it is that I'm now worried about my plans to go to a professional conference next weekend.  But looking at my feelings more closely, I realize that nothing seems important to me.  And yet this isn't a short-term emergency where I can put other things aside, this may be the next 10 years of my life.

Emergency room visit

Friday morning a few minutes before I headed into class I got a phone call from John.  He was crying so that I couldn't understand what he said, beyond that he had fallen.  I grabbed a film for my teaching assistants to show and headed home.  Luckily I had gone in very early so my car was right in front of the building.

I found John sitting on the bench in the bathroom, with a mess on the floor and in his clothes.  Trying to take his clothes off he fell and hit the side of his face against magazine table.  He had a lump and a small scrape, but he wasn't in pain any more. I helped him get the rest of his clothes off and get in the shower and I cleaned up the floor.  I left the clothes to deal with later and went back and taught the second half of my class.

When I got home again I ate my own lunch and then cleaned up the floor and helped him get dressed.  I made him some lunch and then he discovered he couldn't eat it because it hurt so much to chew even something soft.  We decided that had better be looked at, particularly since it was Friday afternoon, so we went to the local urgent care center.  The wait there is usually very long--this wasn't too bad in comparison.  The nurse-practitioner said he needed an xray.

I explained that he couldn't lay flat on the table because his neck is bent forward too much.  It turned out they planned to do the xray sitting up and the problem was he couldn't turn his head to the side very far.  Eventually the technician had him sit on a stool and put his head forward on the table.  He wasn't very stable that way.  I suggested I could robe and hold his shoulders and to my surprise the technician went for that.  The technician said the xrays didn't show anything obvious.

We waited a while for the xrays to be read at the hospital.  The nurse-practitioner came in and said John would need to go to the hospital for a cat scan but it looked like his jawbone was shattered and he would need surgery.  We were surprised given what the technician had said and John's lack of pain, but we headed for the hospital, with a brief stop to get me some food and John a milkshake.

They took John back right away, though then we waited a while for the doctor.  The nurse said the radiologist hadn't seen much, and we began to realize that the nurse-practitioner might have misunderstood the report.  But they did want to do the cat scan.  After another wait they took us back and again they included me in the process of positioning John.  This time he was stable by himself and the technicians just asked me to go to the booth with them each time they took an exposure.

Eventually the doctor came and reported they didn't see any break at all, it must be just a bruise that made it hurt so much.  He gave John a  prescription for pain medicine and we got home about 8 pm.

I have had the principle "avoid the emergency room at all costs," but this was actually a good experience.  We weren't there much over two hours, and that on a Friday evening.  They were much more willing to let me accompany John for everything than I had expected.  I don't know if it was just because they saw he was on Aricept.

When we got home I made him some carrot soup, but told him he would have to ask Paul to help him get in his pyjamas.  Today he has not dared try eating anything that requries chewing.  I'm discouraged by the strain.  Can I really go away next weekend?

I had a useful meeting with an Elder Law attorney yesterday, so let me sum up what I know.

If you don't want to spend all your savings on your spouse's care, it is worth seeing an elder law attorney who specializes in Medicaid at least 5 years before your spouse needs nursing home care, particularly if your spouse does not have long term care insurance (or might run out).  The rules are very complex and vary a lot from state to state.

Medicare does not pay for nursing homes beyond a few months of rehab.  Medicaid will help with the cost of a nursing home, but only after most of the savings of both spouses have been spent, which is easy to do when a nursing home costs $5,000 to $10,000 a month and some people with dementia live in a nursing home for many years.  My husband's 100 year old aunt has been in a nursing home for two years and is doing well--in a wheelchair but still mostly competent and enjoying going out to a restaurant for lunch.  Her long term care insurance lasts 4 years, of which she has used close to two.  When that gets close to running out she will have to move to a nursing home that takes Medicaid, but spending down her savings and applying for Medicaid should be fairly straightforward.

It isn't so straightforward if you are married.  Medicare treats the two spouses as a unit--it doesn't matter if assets are in one name only (even a prenuptial agreement won't allow one spouse to keep separate funds).  The well spouse is allowed to keep the house and its contents, one car, and half of the couples savings up to around $100,000.  All the rest of the couples's savings must be spent on nursing home costs, including in many states the well spouse's retirement savings.  I have a lot more than $100,000 in my IRA and 403b retirement savings accounts.  If I didn't live in South Carolina, I would have to pay the early withdrawal penalty (I'm only 56 so I could easily be under retirement age when I needed the money) and spend down those funds on my husband's care before we could get Medicaid help with the cost of a nursing home. 

What about my retirement years after he is gone or money I had hoped to pass on to my children?  About the only way to keep more than the allowed amount for myself is divorce.  I do have some options for my children if I do it now.  Medicaid looks back and counts any money given away up to 5 years before the person applies for Medicaid.  I can give money to my children or set up an irrevocable trust for them, because I am at least 5 years away from needing help, but if I did that within 5 years, Medicaid would not pay for a number of months equivalent to what was given away.

Be careful also if you expect to inherit any money.  If my mother dies before my husband, the inheritance I get from her must be spent on his care before he would be eligible for Medicaid.  There may be a way to fill out legal forms to refuse the inheritance now, so it goes to my kids instead.  But I have to do that before the five year look-back or Medicaid would count it as a gift.

Reflections for my 35th Reunion

Here's what I wrote for my 35th college reunion (which I don't plan to go to):

My kids are in college—it isn’t yet clear what their life choices will be. I’m still in the same job (over 25 years now). I built a program, Science and Technology in Society, that is holding fairly steady, but at a state university in this economy, holding steady is the best I can hope for. I spent 7 happy years doing triathlons, my longest one a half-ironman, but I’m not finding room in my life for the training any more.

The big change in my life is that my husband (now 66 years old) was diagnosed with Parkinson’s disease and the beginnings of dementia in 2008. His disease is progressing slowly and he can still mostly take care of himself, but I take care of almost everything else. It is far from the equal partnership marriage I signed on for. I managed renovating a house for his future needs and we moved--that was my major focus for a year and a half. The past year and a half has focused on my daughter’s college search process. I still enjoy my job, but I haven’t figured out how to focus on my own research the way I had hoped to when I reached empty nest.

I haven’t made peace with the lack of control yet. I understand that there is nothing we can do to stop my husband’s slow decline, but it is hard to wrap my mind around that and stop researching the disease. On a day-to-day basis the difficulty is how often I have to drop what I might have planned to do and instead help my husband with something or take him to a doctor’s appointment or do something for his 100 year old aunt, who lives in our town. And this could easily go on another 10 years. It is the task I have been given and I’m good at some of it. But I mourn my hopes for in this stage of life.