We saw Bonnie's primary doctor and got the results of Bonnie's MRI of her skull and brain. The MRI shows no cracks in her skull, no rocks, and no tumors. The only issue is "small vessel disease" = hardening of the arteries, which is consistent with being 65 years old. Bonnie points out that she has spent her whole life filling her brain with what she wants to know, and so she is closed to a brain transplant.
The good news is there is nothing wrong with Bonnie's head, except that it hurts everyday. Bonnie is currently chalking this up to "eye strain".
Bonnie's scleral lens specialist and eye surgeon in Boston sees more patients who suffer from Graft vs. Host Disease in a week than most eye surgeons see in a career. At our request our Boston surgeon sent a letter sharing her experience on precautions to take for cataract surgeries on people with GvHD, to our local cataract / lens replacement surgeon.
In one line she mentioned that she routine checks for signs of endophthalmitis = a post-operative staph infection that shows up one week - five weeks after lens replacement surgery. Recent statistics show this staph infection occurs in about 2 out of 1000 cataract / lens replacement surgeries. Bonnie continues to test positive for MRSA - a virulent form of Staph infection that is drug resistant, and she is on immune suppression drugs to keep peace between her donor's immune system and her organs - as such Bonnie risks are significantly higher.
The risks of endopthalmitis caused our local eye surgeon to reassess Bonnie's surgery. His nurse called to say that he apologized but operating on Bonnie was simply beyond his skill set and out of his comfort zone.
Today, we saw an infectious diseases specialist who prescribed a "decolonization" program to get Bonnie's MRSA to go into remission, so she can test negatively for MRSA and be cleared for eye surgery.
We are communicating with Bonnie's doctors in Boston to sort out where Bonnie can will get her cataract remove and lens replacement surgery done.
I believe our eye surgeons and GvHD specialist in Boston, who teach at Harvard Med, are our best resources. They are in condition to recover from endopthalmitis as this is a kind of rescue surgery that is done at Mass Eye and Ear by surgeons skilled at such procedures. We will figure out how to get Bonnie her sight back.
We both got massages two days ago and are more relaxed and appreciative of our lives together.
We love our lives.
/Daniel for BanD
Goodness..it's lovely to hear you love your lives. I apologize for not checking in more frequently! Sending lots of love and hugs. I spent last weekend with our DC grandkids and am feeling totally rejuvenated myself.
much love,
Lexy and Major
Posted by: Lexy Martin | April 30, 2009 at 09:53 PM
Well, that is mostly great news.....Thanks for the hot off the press report.
love, betts PS I am glad your local doctor was honest about what he could do...that's not always so with docs!
Posted by: betsy | May 01, 2009 at 02:54 AM
I am constantly amazed how you both handled everything! You are role models for me.
Wonderful news about your massages. Dr. Beanie is prescribing more massages!!
Love you both soooooooo much!!
Posted by: Beanie | May 01, 2009 at 02:18 PM
Hoping weather is beautiful, Bonnie is becoming more and more ambulatory, compensating for loss of sight with other of her beautiful senses. We've been inundated with well needed rain as I prepare for Germany and UCLA mother's day weekend. Love you guys! betsy
Posted by: betsy | May 04, 2009 at 01:13 AM
Thinking of you. That's it! love, betsy
Posted by: betsy | May 06, 2009 at 10:28 AM
Daniel,
As always, thank you for the updates....massages are great. Continue to love your lives and each other!
Love, Rosemary
Posted by: Rosemary Remacle | May 07, 2009 at 01:40 AM
I like coming hear to see if anyone has checked in. Hoping Bonnie has a well deserved special mothers day...as mother and grandmother! I'll be down at UCLA with "my little one"..... love, betsy
Posted by: betsy | May 07, 2009 at 10:58 PM
Congratulations to you Betsy on being the mother you are and the den mother you are to your patients and families. I intend to join your "survivors and caregivers" group next week, if I can do so long distance. We are about to go to one of Bonnie's many eye doctors and see if he will do her cataract removal and lens replacement surgery in the next couple of weeks when she is no longer testing positive for MRSA. Happy mothers day to all of you who are or act as mothers. /Daniel
Posted by: Daniel Shurman | May 08, 2009 at 09:59 AM
Happy Mother's day "on the real day" LOTS and LOTS of love, betsy
Posted by: betsy | May 10, 2009 at 11:16 AM
Happy Mothers Day Love, Beanie
Posted by: Beanie | May 10, 2009 at 12:54 PM
I was just reading an article on support people by Ken Wilbur. He talked about how critical it was to do things like be in a support group (and how hard they were to find) and to be in therapy. For both patient and support person. I don't have ease of access or time before I leave to send it but you Daniel probably can find it faster than lighening. Ken Wilbur is the guru of transpersonal psychology. Well worth the read. I'm off to Germany tomorrow. 45 day.... a lot can happen in 45 days. May it all be GREAT. love, betsy (off to do my last groups for awhile)
Posted by: betsy | May 12, 2009 at 11:54 AM
A note from Germany, sending Bonnie and Daniel loving prayers. I'm hoping to be unjetlagged soon. Enjoy those ocean breezes....such healing!
Posted by: betsy | May 16, 2009 at 04:36 PM