Bonnie Recovery

Happy 2008

Happy 2008 We are having a quiet New Year here at the beach.  Daniel has gotten into the spirit of Anglican Christmas with its twelve days of celebration. He has presented me so far with fifteen cookbooks, two from Il Fornaio, two from Food Network science guru Alton Brown, and eleven “Beautiful Cookbooks”  from regions of the world like France, Tuscany, California, The Pacific Northwest, The American South, Mediterranean, Asia, Australia, China etc. 

These are part tour books, part history of cuisine in the focal area, and recipes with lovely pictures of what the completed dish looks like.  I’m particularly enjoying the history, for example how ancient Romans ate.  I had no idea the Italians invented the fork nor did I know what a recent invention it is.  I have a pad of small post it notes for marking recipes I want to make.  Daniel is promising to take me to any region where I master three recipes. We are having fun with all this.  It is a delight each morning to get an eggnog latte and another beautiful book for a present.  Today is the eighth day of Christmas and I’m not nearly ready for it to end.

The large format cookbooks have fourteen point type.  My vision is quite limited right now and that makes it barely possible for me to read the books.  I had hoped to put off seeing an ophthalmologist until I return to Cambridge at the beginning of February.  Now I plan to call in Wilmington tomorrow until I find one where I can get an emergency appointment this week.  I think I may have infected my eyes.  Oh pain.  Working in Microsoft Word with zoom text set at 200%, I’m able to write this and also to get the final papers for my courses finished.  Normally I can get only a couple of hours of writing before my eyes give out, though today I was able to do twice that.  It is great to be so nearly finished when I’m facing a Jan 7th deadline.

The Eyes have had it. Arrrrrggggghhhhh.

We have solved Bonnie's hearing loss with the addition of two state-of-the-art, behind-the-ear hearing aids with microphone arrays and 32 channel ultra-fast response Digital Sound Processing chips.  They are comfortable and Bonnie can hear her grandkids whisper and squeal.  Fun. 

Bonnie has finished her course work and written her papers for her Masters degree at EDS.  She also made her first Ciabbata bread.  It required four rises.  It turned out better than the loaves we get from Trader Joe's.  A bit more salt and Bonnie's Ciabbata bread will compete with Il Fornaio's.  She has turned her near starvation experience of a year ago into her new hobby.  But she had to race to get her work completed before she could no longer see.  She was using a magnifying glass to read her books and huge fonts on her screen so she could read what she was typing.  Now her eyes are shot.  She can hardly see.   

Good news and Bad news and Bread.

There is good news and bad news and bread here today.

The bad news is that Bonnie eyes hurt, hurt, hurt.  Her sight has gone from bad to worse.  We called the ophthalmologist on Sunday morning.  It simply got too bad to wait for Monday.  The doctor prescribed a fifth kind of eye drops.  I drove across the bridge to Southport, the nearest town with a CVS drug store.  Since I was going to the pharmacy, Bonnie sent me off to get more flour and yeast so she could make more Ciabatta bread.

Never mumble when you pray.

Bonnie's left eye is "ulcerated" and causing her pain and headaches.  She is unable to read or write.  She is really happy that she finished her fall semester courses in the nick of time. 

She can not make out images on the TV.  Sunlight is impossible for her, even muted light is difficult.  Bonnie has trouble walking, even with her Stevie Wonder sunglasses on.  But she does do a wicked Steve Wonder impression, toothy grin, head weaving and all.

We saw her ophthalmologist yesterday and today and will do so again for the next two days.   He measured the ulceration in her left eye and it is smaller today and there is no sign of an infection in either eye.  The antibiotic and steroid eye drops seem to be doing their jobs. 

On the other hand, we realize that we may have to race for Boston, or UNC Chapel Hill Hospital if her eye gets infected.  We are packing suitcases just in case. 

She made chicken cacciatore tonight.  Bonnie is in good spirits, though sober about the challenges.  Before I met Bonnie I prayed for a smart, tough blonde Texan who knew her way around the kitchen.  I must have mumbled as I have a smart, tough blind Texan who knows her way around the kitchen.  Thank God for her. 

Now I take care to not mumble when I pray.

Please get us through this challenge too.

/Daniel for BanD

 

Bonnie's left eye cornea is perforated - Flying back to Boston.

Bonnie's left eye cornea is perforated - We are about to fly home to Boston for treatment.

The good Doctor Cutler spoke with the Director of Cornea and Refractive Surgery at the Massachusetts Eye and Ear Infirmary (MEEI).   Unfortunately, he is away from the office tomorrow. 

Since he cannot see Bonnie, Dr. Cutler suggests that the best way to get care tomorrow is to present to the MEEI Emergency Room, where Bonnie will be seen by the senior Cornea person of the day and triaged appropriately - This method is easier than trying to get squeezed into someone's clinic.

The good news is that we got a flight out tonight and we get to sample the menu of yet another hospital cafeteria in Boston.   We are writing a Zagat guide to hospital cafeterias to keep our selves occupied.

We are now running our well practiced fast-break for the airport.

/Daniel for BanD.

Emergency Eye Surgery - Owwwww.... 9 on the pain scale.

We made it back to our apartment in Cambridge at 2AM last night.  We were in the Massachusetts Eye and Ear Infirmary Emergency Room at 11 AM this morning. 

MEEI triaged Bonnie and had her scheduled for an emergency surgery by 1PM.

The problem is that her eye was leaking fluid and her cornea had gone flat.  Her sight had gone from bad to way worse.  Her eye had to be repaired immediately. 

First emergency eye surgery failed. Cornea transplant tomorrow.

We went to Massachusetts Eye and Ear Infirmary at 9 AM to check the status of Bonnie's painful emergency eye surgery last night.  The doctors tried to plug the leak in her eyeball with super-glue.  It had a fifty/fifty chance of success.  This time we drew the short straw.  The surgery failed.

We will have an emergency cornea transplant tomorrow morning, to see if we can save Bonnie's sight in her left eye.  The cornea surgeon told us that the first cornea transplant is likely to fail in Bonnie's case, as it is very difficult to transplant into a patient with acute Graft versus Host Disease in an on-demand / emergency setting. 

If the "graft to repair / cornea transplant" fails tomorrow, we may get to try again -- or not. 

In any case, tomorrow we can NOT do a full lens and cornea replacement to correct Bonnie's cataracts because it is riskier than tomorrow's simpler graft of the cornea only.  If the "graft to repair" succeeds tomorrow, Bonnie will need further transplants to correct the cataracts in both eyes to see in the future.

The doctors have not yet told us what total failure of successive attempts to repair the cornea in Bonnie's left eye will mean.  On the other hand, it is obviously NOT a good case scenario to have an open, leaking eyeball in a person with a compromised immune system.

We shall see....

Bonnie under went her second emergency eye surgery in 72 hours.  This time the surgeon grafted a "new" cornea into Bonnie's left eye.  "New" in this context means tissue gathered from a donor (corpse).   

This morning, 24 hours after surgery, the doctor says Bonnie's graft appears to be in solidly in place.  However for the surgery to be a success Bonnie has to grow her own corneal epithelium (surface cells) over the implanted cornea.  The surface of the cornea is only 5 to 7 cells thick, but this thin, fragile layer is vital to the health and vision of the eye. 

Bonnie will see the surgeon on Tuesday morning to see how the graft is holding up and if it is stable, Bonnie will go out to the Boston Foundation for Sight to be fitted for a Scleral Lens for her left eye to protect and bath the cornea in a saline solution.  The "liquid bandage" provided by the Scleral lens will prevent her eyes from drying out and scratching the new cornea.

We trust that Bonnie will be able to grow her own new corneal cells over the transplant, despite the current bout of Graft vs. Host Disease.   

We shall see... 

/Daniel for BanD

Learning to live with GHVD

Jennifer sent me this joyous picture of the kiddos. 

My phone is at Sprint getting its screen replaced.  I dropped it on Saturday and shattered the screen in a fluke accident.  Funny that my phone problems continue to correlate with my health problems. ugh.

This is a comment about Daniel's last post.  I give thanks often for my college major in communication for teaching me that we live in the worldw of our own mental models, not an objective reality. My personal history is what I remember (public history is what got recorded by someone with certain intentions and in a particular context). All of this is to say that Daniel’s description of my resistance to his and the doctor’s wisdom is completely different in my recollection. I’ve learned that protesting another’s recollection isn’t very useful, but I did want to document that I disagree with what he has said about me, just because I strive to document what is true for me here on the blog. Thank you for your patience as we reveal the stresses in our relationship that are coming with our continued challenges. It is comforting for me, and I think for Daniel, to have friends who care about what is happening with us, both good and bad. 

While I don’t think I was ignoring wisdom of others, I have learned from my (recalled) experience with graft vs. host disease in my eyes is that I must be more diligent in attending to symptoms and must listen very carefully to what doctors and Daniel are telling me. I expected eye problems to go away when I got off Prednisone. If I’d been reading the literature better, I would have seen that my problems result from GVHD, not Prednisone. I’ve been on the web this morning (with my magnifying glass) checking out what is known about mouth sores and sinus. Betsy Hall has written here about how pernicious GVHD is. I’ve been so fortunate to have milder symptoms. The downside of feeling “healthier” is when I fall onto one of the mines that GVHD is, both Daniel and I are startled. 

With all my regrets about what I might have done that I didn’t, I’m also very grateful that my situation is as good as it is. Daniel has written about what I call the “big contact lens”; we are so fortunate to be in Boston, the one place in the world where a person can drive 10 miles and get help for the GVHD problem of dry eyes. If we were anywhere else, we would not have heard of this miraculous new technology. 

I used to have the mental image of being on a tightrope, liable to fall off unexpectedly at any moment. I had such a great Advent season, able to walk to chapel every morning, energetic to cook, I fell into the belief that everything was turning up roses. Although I was on Prednisone, I felt good and felt like I was continuously improving. I think I need to go back now to more of that “tightrope” way of understanding and living daily life. This means being more alert and sensitive to what could be going wrong.

I am feeling pretty good, though quite tired today. Daniel says my body may just now be ridding itself of the anesthetic I got on Saturday. It does feel like that. We had three inches of snow by the time I got up, and I decided (wisely I think) not to walk to chapel to see if anyone was there (as I would have done in December). It is really snowy here and the kind of day that would make anyone just stay inside. I’m surfing the web about GVHD and now writing this blog. I’m lubricating my eyes at least every hour and keeping them closed most of the time. Daniel gave me a radio a couple of years ago. At the time, I had no idea why I would want that radio and was unimpressed with the gift. In the past two years, it has become one of my great friends. I don’t know what I’d do without it in the hospital. Since Daniel doesn’t appreciate NPR like I do, I’ve been listening to the radio all day with a headset. We were able to listen to the Patriots game on Saturday (we left our TV in NC when we flew home).

Speaking of NC, Daniel plans to fly back to get the car (and TV) and meet with some contractors about a new air conditioner and paint for one of our houses there. Sunday is my 64^th birthday; the best birthday I can imagine to see Zac’s basketball game on Saturday. I’ll ask the doctors about my going with Daniel on the flight down and driving home with him. The weather outlook is ok for the weekend, and I don’t think I’ll need to see a doctor in the four or five days of that trip. Seems like what I’m doing is mostly keeping my eyes closed with lots of saline solution so that the outermost layer of my cornea will rebuild on both eyes. 

Well, this has been another chatty post from me. I can see text with my right eye by zooming the view to 200%. It feels good to be in communication with you, doing something that is almost normal. Thank you for your prayers and attention.

Bonnie for BanD

Three Doctor Day

On Friday, we had appointments with both eye doctors and my BMT specialist Cutler.  Cutler’s assessment was pretty good news.  He still contends that I’m dealing with “late onset acute graft vs host” and not the more pernicious chronic gvhd.  I have sores in my mouth that I expected to be the sure sign of chronic gvhd.  He says not.  He prescribed some steroid mouthwash to use over the next few days to see if it will help.  I hope to feel more comfortable soon.  The eye docs have told me that the only case of perforation they’ve ever seen develop as rapidly as mine had been diagnosed as late onset acute gvhd. 

The news from the eye docs is not very good. 

When I’m 64 . . .

Today is the day! Yep, I’ve made it to 64. I’m celebrating first with a trip at 10 out to the Boston Foundation for Sight to get my left eye checked out. At the doctor’s instruction, I made a 10” letter E to post on my wall; I’ve been checking the vision of my left eye over the past day by making sure I can read that letter when I’m eight feet away. Not much vision yet, but I’m keeping what I have.

Daniel and I got presents for this birthday and last year (recall I was in the hospital in Chapel Hill last year). For LAST year’s birthday, we got a new TV. We will enjoy that for the game and I can watch the finale of Amazing Race. I guess that we are skeptical about whether we’ll be able to go to NC to get our TV this week. It will be good not to be moving the TV down and back. We’ll be ready to jump and fly when we need to. We also got some beautiful new pots. I think I may be as excited about those as the TV. Wow a 14” skillet. 

 Now I’m back from seeing the eye doc. The news is as good as it could be. The epithelial layer is now covering about 30% of my cornea, up from 15% on Friday. Dr, Jacobs confirmed that my eye is not leaking though the pressure is low (this is VERY good). She does not want me to go to NC because I could turn south quickly and need emergency surgery. Still, I’m headed in the right direction. Prayers and good wishes are helping.

 I’m off to watch the pre=game shows.  We're chilling a bottle of my favorite champaign.

Have a good holiday weekend.
Bonnie for BanD

Miracle Eyes

Thank you for your birthday greetings and wishes.  I had a great birthday.  I slept through the first half of the Pats game. 

Prayers are working. On Tuesday, the eye surgeon found the epithelial layer had grown to 40% from 15 on Friday. She no longer talked of emergency operations or stem cell transplants to my eyes. Today the coverage is nearly 75%. Wow. I’m still not improving in vision, and the pain related headaches continue, but I’m told this is quite normal; I must heal that outer layer before anything else can happen. We continue to see the contact lens docs every day. I think that Daniel is weary of the endless journeys. With the stress of immediate critical situations behind us for now, he is—as usual—feeling the stress he suppresses in times of crisis. We just gave up on our plan reservations to NC today. He or both of us will get a reservation to go when we really know that we can go. That may be Feb 5, but … well … we just don’t know.

The docs are amazed at my progress after such a bad start. But then, I am a new patient to them and they are only now beginning to appreciate the web of prayer and concern in which I am held. Thank you for your prayers. They are working!

Third Eye Surgery.

Bonnie's mystical third eye does not need surgery. But her left eye did develop a "small leak" requiring Bonnie's third emergency eye surgery in 15 days.

Dr. Colby says Bonnie's left eye is only leaking around the 1 o'clock position; It will only take 2 stitches to secure.  We can do surgery at 3PM.

Bonnie is being anesthetized for her third emergency surgery as I write. This surgery should seal a leak in the seam between Bonnie's original cornea and the new graft.

Bonnie's Post Surgery Report

Greetings from Snowy Boston,

I’m doing ok after surgery.  We saw the surgeon on Sat morning.  Dr. Colby’s assessment is that the rest of my epithelial layer will likely heal now that it is well secured.  It is less painful than before the surgery; I think it must have had a bit of flap when I didn’t have the lens on.  I am wearing a soft “bandage” lens now instead of the big contact.  I wear the soft lens 24 hrs a day.  I’ll see Dr. Colby again on Tuesday.  She says I’m “not out of the woods” yet.  If my eye doesn’t heal, she will do more surgery, this time putting a human tissue to cover my eye.  She was pleased that I have as much coverage as I do.  Her recommendation, with Dr. Cutler’s consent, was that I re-up my systemic steroid dosage to 60 mg from the 40 I had been taking this week.  Her assessment, like that of Dr. Jacobs, is that systemic graft vs host is the underlying problem.  I thank Daniel for getting this increase in dosage to happen.  Both Colby and Jacobs had been talking to us about systemic GVHD, but neither initiated communication with Cutler about increasing the dose.  It was Daniel who raised and pursued the issue with Colby.  Colby has really been an initiator on other matters, and so it was funny that she was not acting here.  Thank God for Daniel who moves rather than just thinking.

The surgery itself went well.  They gave me what they call a “block” and compared it to how one gets numbed for tooth work.  My eye was covered when they did the actual blocking, so I don’t know how it was done, nor do I want to know!  The great thing was that it cut off all my vision.  When I had the first surgery done with numbing drops I had to tolerate a bright surgery light.  With this block, all I could see was black.  With the relaxing medicine I got by IV, I was in a cheerful mood, talking with the doc and feeling no pain.  It was funny that even the top of my head felt numb for as much as eight hours after surgery.  I’m already anxious about how they are going to take out all the stitches, but I’m telling that I’ve had good experiences with all the surgeries so it can’t be that bad.