Bunch of Updates

Wow, a lot has happened since I last posted. Most of it is family medical stuff so I will try to catch you up in this one post.

Walter's Eye Surgery
Walter is doing well after his surgery. Everything went fine and we're just waiting to see how the eyesight will settle. Right now it's in some ways a little better than before the surgery (but not as good as a few weeks ago) and in other ways it's not so good. It takes a while to heal so we will be patient and wait to see what happens. The good news is that Walter's eye pressure came down to a very reasonable number and hopefully it will stay down for a long time. Many times after a surgery like this there are small adjustments to be made including which eyedrops to take, but we'll get that all sorted out.

Mom's Kyphoplasty
My mom's surgery went very well. And the best thing is it greatly reduced her pain. We are very thankful for that. Unfortunately she wasn't able to eat for weeks before the surgery due to pain and pain meds. When they weighed her in pre-op we found out she was down to 93 pounds. Gaining weight is going to be a high priority for her.

Now Mom's Sick
Two days after Mom's surgery she came down with a horrible diarrhea problem and has been sick for 3 days. She's been to the emergency room twice and was given IV fluids. The doctors think it's some kind of gastroenteritis. She has an appointment with her main doctor tomorrow so we'll find out what he has to say. In the meantime the problem seems to be slowing down. Hopefully it's about over.

It's frustrating because the first thing they say for diarrhea is to stop eating solid foods. She's not going to gain any weight that way. Poor Mom, she's getting pretty frustrated and discouraged with her health issues. We hope something will turn around for her very soon.

And Then There's Diega
At 5:00 this afternoon I got a call from my sister Diega. She was headed into emergency surgery for appendicitis. Diega has been having abdominal pain for a few days. She went to the doctor today and they found out it was her appendix. I'm told they will do the procedure laparoscopically and she should be able to go home tomorrow.


Amongst all the bad news there are some blessings to count. For example I'm really glad that Mom's back is feeling better and that she didn't get this gastroenteritis thing while she was still having intense back pain. And of course there's my own health to be thankful for...

Surgeries Stacked Up

Well it's official. Walter's glaucoma surgery (a valve implant) will take place tomorrow afternoon at Swedish here in Seattle and my mom's surgery will be on Thursday afternoon at St. Peter's Hospital in Olympia. Walter goes in Thursday morning to have his eye patch removed and probably get some external stitches out. After I take him home from that appointment its back to Olympia for Mom's surgery. Mom will stay in the hospital until about noon Friday and then I will stay with her for 24 hours after that.

Hopefully by the end of the week everybody will be all fixed up and doing well. I will try to post an update on Sunday.

A Whirlwind of Appointments

Whew, what a crazy week. It occurs to me that as of tomorrow I will have accompanied Mom and Walter on medical appointments every day for a week except for Sunday. The schedule went something like this:

• Friday - Walter appointment with eye surgeon (cornea specialist)
• Saturday - Mom had to go to the eye doctor for her eye infection
• Monday - Mom's follow-up appointment with the eye doctor
• Tuesday - Mom's appointment with her primary care doctor
• Wednesday - Walter's appointment with glaucoma specialist
• Thursday - Mom appointment with primary care doctor about a new issue. She needs a test and consultation.

The upshot of all these appointments is everybody's pretty much doing okay. Mom's eye infection is much improved although she will be on antibiotics for a while and we're keeping an "eye" on it. She had a good visit with her primary doctor but a couple (hopefully minor) new issues have come up and she needs to see him again tomorrow.

Walter's sight has been slowly improving and seems almost back to where it was before August 1. The glaucoma specialist is changing up his medications in an attempt to bring his eye pressure into normal range. The goal is to avoid long-term sight decline and maybe even have a potential for more sight improvement.

I think we're all hoping that things slow down a bit and everybody stays healthy. Everyone has been very understanding and we appreciate all the well wishes we've received from our friends.

A Tale of Two Eye Appointments

Well it's official. Mom has a raging eye infection. When we saw the doctor on Saturday morning he drained the area as best he could and put her on antibiotic pills and drops. If it's not better by tomorrow she will have to see an ophthalmologist, but she tells me by phone that it is indeed getting better. Whew. She goes back for a follow-up appointment first thing tomorrow morning.

Walter's appointment on Friday went okay. No change on the eyesight. His eye pressure has been moderately high for a while so his doctor wants him to see a glaucoma specialist again to see if there is anything more that can be done to bring down the pressure safely. He already takes 3 eyedrop medications for glaucoma. He has an appointment on Wednesday and then goes back to his regular doctor (cornea specialist) three weeks later.

Quick Updates

I was going to post a funny little story for you today but my camera went on the fritz and I couldn't get the picture I wanted to go with it. I got some new batteries for the camera and hopefully that will do the trick, so maybe I can post it sometime this weekend.

Things are hopping around here. Mom's visiting nurse called me to let me know Mom has an eye infection ... again. I saw it starting to swell on Monday and figured I may need to take her to a doctor soon. I was able to get her an appointment tomorrow (Saturday) morning. Her eye doctor will be in the office and although their schedule is full they will squeeze her in. If it's like the last couple of times she just needs some medication and it should heal right up.

Mom tells me the soreness from her broken ribs is starting to lessen, and that's a good thing. I'm glad she's starting to feel better and a little stronger. She's still not eating enough though.

Speaking of eye doctors, Walter has an appointment this afternoon. His sight has been pretty stable although we're still hoping it will improve back to the pre-August 1 levels. I don't expect anything too exciting from that appointment.

After Mom's appointment and picking up medicine tomorrow I think Walter and I are going to head to the Puyallup Fair. I hope you all have a good weekend.

Can You See the E?

As I posted back on the 18th of August Walter lost some ground with his eyesight when the doctor took away the antirejection drops Prednisolone. Since then his sight has been sometimes up and sometimes down, but not back to where it was before August 1st even though he has returned to using the drops. His most recent appointment was on Wednesday.

To give you an example of what I mean by "up and down," when the doctor's assistant gave Walter the quick chart exam at the beginning of his visit Walter was not able to make out the big E at the top of the chart. Obviously he knew what it was but if he didn't know he would not have been able to make it out.

After the assistant left the room we had a few minutes to wait for the doctor. During that time Walter yawned causing tears to flood and "water" his eye. After he did that he was able to see the E. So how well Walter's sight is doing seems in part due to moisture levels. He has drops he uses for moisture (an artificial tear gel) and he's also taking Restasis so there's nothing new to add there.

Walter's doctor agreed that we have lost some ground. He adjusted Walter's meds some more and he will go back on the 21st. In the meantime I try to be extra watchful for hazards that Walter might not see himself.

Walter - Eyesight Difficulties

A couple weeks ago I wrote about Walter's doctor cutting back on some eyedrops - specifically the antirejection medicine, Prednisolone. That hasn't worked out so well.

Shortly after stopping the drops Walter began experiencing some itchiness and irritation in his right eye. It looked more red to me than usual. After about a week he noticed a lessening of vision. He described it as cloudy the way his vision was before his corneal transplant in November 2005.

Yesterday we went back to the eye surgeon to have things checked out. After a quick test it was clear Walter's sight is indeed diminished - he can no longer make out the big E on the chart. The doctor decided the change was due to stopping the Prednisolone. He put Walter back on the medicine at a higher dosage - 4 drops a day instead of one. We're hoping that Walter's vision will make a quick turnaround and hopefully he will return to the level of sight he had a couple weeks ago.

I think Walter's a little anxious about this turn of events as he asked me yesterday "what if it doesn't come back"? We're really trying hard to stay positive on this one. Most corneal transplant patients are able to go off this medicine a year after surgery. It has been almost 2 years for Walter but the doctor says it's clearly not time yet. Maybe we try again in another year.

We also got a reminder that we cannot measure Walter's progress against other patients. His eyes are different from anyone else this doctor has seen because of the excessive scar tissue from Peter's Anomaly. I think this is one way that Walter wishes he were not quite so unique.

We're hoping and praying for a quick turnaround of Walter's sight.

Entering a New Phase

Walter had a checkback with his eye surgeon the other day. His sight is pretty stable now. His doctor has decided to take away the antirejection eye drop medicine he is taking. The doc left him on the medication longer than he usually does because of all the different issues for Walter's eye. But he decided it was time.

Walter has to go back in 2 weeks now to make sure that there are no ill effects from stopping that medication. If all goes well Walter's eye pressure will likely go down. That's a good thing. Walter is currently taking 3 medications (eye drops) to keep his glaucoma (high eye pressure) under control. It will be nice if he can be weaned off one or two of those.

The doctor is pleased with how the corneal graft is healing. Walter still has stitches in his eye and those are fine to stay there. As the doc put it "we are entering a new phase." With luck this new phase will mean less medicine. Yay!

Restasis Seems to be Helping

As I mentioned in my last report on Walter's eyes, his doctor had him trying out Restasis. Walter really couldn't tell from his daily experiences if there was a change in his sight. But his exam shows that Walter has made a tiny bit of progress.

First, the doctor had Walter look at the eye chart. In the last visit he could only see the big E on the top. This time he could make out one of the two letters below it - the L. Also, when the doctor looked into his eye he said he likes what he sees. The surface of the cornea seems to be smoothing out and that's what would improve his vision. Dr. McKillop said his eye is looking the best he's seen it so far.

I love being able to report good news on this topic. Walter goes back in a month. In the meantime it looks like Restasis may be a permanent addition to Walter's eyedrop regime.

Eye Report

I thought I posted on the blog last month about Walter's vision, but it looks like I did not. Walter had a setback with his vision decreasing since the first of December. It was rather scary because he seemed to have lost any gains made from the surgery. At his appointment in late December the doctor said the transplant still looked good, but the eye was red and the surface of the cornea was rough. He wanted to make sure we weren't on our way to rejection, so he increased Walter's dose of the antirejection drug to three times a day.

Walter went back to the doctor last Friday . His vision is "marginally improved" from last time. Of course I am hoping this will be a trend and it will just keep getting better until he at least has regained the sight he had after the transplant.

The doctor cut back a little on the antirejection drug. The antirejection drug increases eye pressure, and his eye pressure is too high. It's a balancing act with the meds to keep his eye pressure in a safe range yet keep the graft healthy so the eye won't reject it. Who knows how long it will take to see where Walter's vision ends up. For now we wait...

Anniversary of Eye Surgery

It was one year ago today that Clay had his corneal transplant and lens replacement. Clay recently had a follow-up appointment with his surgeon and I'm happy to report that all is going well.

In looking back to where he was a year ago, I know Clay is happy he got the surgery. One year later his sight is a little better than it was with glasses before, and much better than it was without glasses. He still has refractions (star filtering and seeing some double images) which are at their worst at night. But we are hoping that with time those things will improve.

Most of all, Clay now has a healthy cornea and hopefully the deterioration he was having in his sight will slow or stop entirely. Also, with the new cornea the doctors are able to more easily see Clay's retina which will make it easier to diagnose any further problems.

The doctor is leaving the stitches in to eventually dissolve unless there is a reason to remove them. A reason to remove stitches might be that in the dissolving process a stitch breaks and the fragment is sticking up causing problems. If the stitches do not have to be removed they can stay in there and could take between 2 and 4 years to dissolve. This is quite a bit longer process than Clay was expecting.

Clay is still taking an antirejection drug (an eyedrop) for the transplant along with all his glaucoma drops, but they are weaning his dose so that hopefully he can stop taking it in a few months.

The eyesight has been pretty stable for months now, so we are expecting any further changes to be minimal. This will probably be the last post on the eyesight updates unless something changes. Thanks to everyone who has wished Clay well in this.

Clay's Eye Report

Clay had a visit with his eye surgeon yesterday afternoon. He's having trouble seeing anything more than the big E on the eye chart, but the doctor thinks that's okay. Clay is fine with where he is at, and so am I.

We asked the doctor when he might take out the stitches. In most people he said he might consider it after 6 months (which we are well past), but since Clay's eye is so special he wants to be extra conservative. It is possible he may decide to just leave the stitches in there and let them eventually dissolve. Or, he may decide to take them out at about a year. That's not until November, so for now we wait and celebrate that he can see to get around with no glasses and the doctor sees no problems in the eye.

We have no idea when things will be stable enough to try new glasses. If nothing else we are learning patience. For now no news is good news.

Another Good Eye Report

Clay went in for another exam by the eye surgeon yesterday. I don't think it could have gone any better. On examination of Clay's eye the doctor remarked "you're looking better than you ever have been!" Wow. He saw no dryness problems, Clay's eye pressure is under control, and all is healing well.

Clay offered from his perspective that he's enjoying reading restaurant menus now. That's something he used to be able to do only with glasses and even then he sometimes needed further magnification. From time to time he asks me about something that looks funny to him, but really it's just something he has never seen clearly before - like the skin on my face! Okay, that's close enough, Clay. I tease him that he now has a bionic eye like the six million dollar man and he had better use that power for good. :)

The doctor reduced his dose of the antirejection drug eyedrops from 2 drops per day to 1 drop per day. He doesn't have to go back now for six weeks.

Eyesight Optimism

Clay's recovery from the corneal transplant and lens replacement is going well. For quite some time he was having problems with dryness and roughness on his eye and that caused really poor vision. Last month his doctor put in a contact bandage which although it only stayed in two days seemed to help. Then the doctor switched him from regular liquid artificial tears to a gel drop type of tears. Those stay in the eye longer.He takes those 6 times a day along with all his other eye drop medications. The new gel drops have helped to keep his eye smooth and moist and the doctor was very pleased when he saw Clay this week. He doesn't have to go back for a month.

Clay's sight has definitely improved. It's amazing the difference really. When we are out in public he no longer hesitates walking around. Instead of lagging behind at the mall because he doesn't want to go too fast and run into something he charges ahead dragging me along if we are in a hurry. No fears that he will accidentally run into someone or something I guess. He still has about 15 stitches in his eye so there's quite a ways to go on the healing. Hopefully it will continue to go well. At this pace it's going to be pretty exciting when he gets new glasses to see what he can see.

The only problem is that he now complains about aging because he can see the lines and wrinkles in his face in the mirror. I'm afraid I haven't been as sympathetic or supportive as he would like because I have the perspective that "wow, isn't that a miracle that you can see those lines!"

Eyes

On Wednesday when Clay went back to the doctor he was told that the extra applications of artificial tears helped the moisture levels in his eye but not enough. So the doctor put in what is called a contact bandage - a simple non-corrective soft contact lens. This is one that could stay in for up to a month so no worries about taking it out and putting it back in and losing the thing in the process.

The doctor had some concern that the lens might come out because the curvature of Clay's eye is different from most. But once he got it in there he thought it fit pretty well. The first couple days after getting the lens Clay experienced some discomfort from his lower eyelid rubbing against the edge of the lens. There was also a decrease in eyesight on top of poor sight to begin with. The last couple of days though the discomfort has gone away and a little of the sight has returned. But we're not sure if the thing fell out!

I looked into his eye trying to find edges of the contact, but I couldn't see it. He goes back on Wednesday so we'll have to see what the doctor says...

Eye Appointment

Clay had another follow up appointment with his eye surgeon on Wednesday. His vision has not been great lately. Clay was due in another month or two to get stitches out, but the doctor noticed Wednesday that a stitch was loose and "not doing us any good" so he decided to remove it. Silly me, I made the mistake of asking at that point "how many stitches are in there?" When the doctor replied "oh, 18-20" I heard Clay gasp. I'm sorry, I should not have asked that one! Wow, I thought he would say 5 or 6 stitches.

It took the doctor 10-15 minutes and he ended up removing 3 stitches altogether. The process of taking out stitches was a stressful one for both of us. Stressful for Clay because the doctor was shining a bright light in his eye plus the process is a bit uncomfortable. Stressful for me because I had sufficient eyesight to see the tools the doctor was using - an X-Acto knife and a pair of tweezers. Yikes, Clay, don't move! The procedure went well though and Clay just has to take antibiotic drops for a few days - a normal practice when removing stitches.

The doctor also said the surface of his eye is drier than expected and more rough in texture. He is thinking about giving Clay a "contact bandage" which is like a contact lens that goes over the eye to keep the moisture in. We really hope that will not be necessary because it would be a big hassle to take care of, and if it's something Clay has to take in and out he will not be able to see it. Anyway, the doc has him doing his artificial tears 6 times a day and if that works he won't need the contact bandage. He goes back on Wednesday the 19th to see how everything looks.

As for surgery we still have to wait to find out what the final result will be. Healing can take a year or more and we are only 5 months in.

Good Eyesight Checkup

Clay had a checkback with his eye surgeon on Wednesday. The doctor says healing is progressing really well. Everything looks good and the eye pressure is fine.

Clay reports that his closeup vision is pretty good but distance is not so great. His vision overall is much more consistent than it was for a while, which is a good thing. The doctor is not really concerned with vision issues right now because so much healing must still take place. He said it is to be expected that Clay's vision will get better and worse with the process and we shouldn't worry much about it until the healing is complete.

Clay gets to cut back a little on one of his medications. He goes back in another month.

Eye Report

Clay had an eye appointment on the 11^th. The doctor really doesn’t know why his vision took a turn for the worse at Christmastime. The good news is that the eye looks good and there are no signs of rejection of the new cornea. On the down side, his eye pressure had climbed quite high on the day of the appointment. The doctor thinks the increase in eye pressure was caused by the eyedrop he takes to prevent rejection of the cornea.

The eye pressure does not explain the decreased vision, but it is important to get the pressure back down. Therefore, Clay was prescribed one more eyedrop to take twice daily for controlling the pressure. This makes a total of 4 different drops he takes between 2 and 4 times a day each. He has to wait several minutes between drops, so taking them sometimes seems like a full-time job.

For now we are just waiting to see if Clay’s vision will improve and hopefully return to what he saw in late November and early December. I think we expected that after surgery his improvement in vision over time would look something like this:

But instead, it has gone a bit more like this:

Clay’s next eye appointment is in a month – February 15^th. For now we wait.

Eyesight Update

Clay's eyesight had a bit of a setback around the 24th of December. We don't know if it's because of flying or something else. Prior to our trip he had good days and bad days with his sight, but starting the 24th there were only bad days for about a week. It was rather discouraging. He says it seems to be gradually improving now. We can only hope it will return to what he calls "the good eyesight" he experienced on the best days in November and December. He returns to the doctor on the 11th for a checkup. For now we wait.

Another Good Report

Clay had another checkback today. Some days his vision is better than others. Today was not so good, and he took that opportunity to talk to the doctor about distortions in his vision. The doctor explained that the cornea is sort of wrinkly and that's from the stitches in his eye holding everything together really nice and tight. He expects that over time that will relax and the distortions should lessen. Clay's eye still has a long way to go in the healing process. All looks really good, though, and we just have to be patient. I was glad to hear there was an explanation for the distortions and there is hope that they may eventually go away.

When do the stitches come out? In 6 months or so. Clay's next checkback appointment is in 3 weeks - January 11th.