Sunday, October 12, 2014

Boston Review . . . .

view from Dr. Stephen Foster's waiting area

Our trip to Boston has confirmed that we are definitely "small-town girls" at heart!  We love visiting big cities, but prefer the slower pace and more open spaces of our area.  (And we love living in a valley, with mountain ranges on both sides of us.)

I hardly know where to begin with an update.  Maybe I feel a little bit of pressure, feeling that some (with limited understanding of Anna's issues) may hope for us to have received a quick fix or a brilliant answer from God above revealed through this appointment.  I've learned over the years to "manage my expectations."  In fact, I try to go into many appointments with no expectations, having learned that what I thought I might hear and what I thought might happen are usually NOT what I hear and not what happens.

Because of my continuing conversations with Jesus, I know deep in my soul that He guided us in this direction.  That is not to say that I didn't have concerns--mainly about where we would stay without paying more than our monthly mortgage to stay just two nights and then once I found a decent hotel for a reasonable price---I kept asking Him how in the world we were going to get where we needed and wanted to go, since we were outside the city and not all that close to a "T" stop! (I did NOT want to drive a rental car through Boston and pay all the parking fees which would come with that.) Now those issues were where I saw brilliant answers from God!  We met such helpful people along the way, and it turns out that the hotel we stayed at provided 24/7 shuttle service to the "T" stop and to the airport.  Our shuttle drivers were such a blessing and were so kind and nice.  They also gave us a chance to rub shoulders with the local people---I LOVE to do that whenever we go anywhere---I prefer doing that than to visit tourist attractions.  (AND, God "sang" to me via Casting Crowns songs playing in my head continually, each and every day in Boston---some of the songs I've quoted in previous blog posts--we KNEW He was walking with us with every step.)

So . . . . why did we make the trip to see Dr. Foster?  When we first thought about it (and talked to Anna's pediatric ophthalmologist), it was because she had significant inflammation since January, and I felt like we were spinning our wheels, and her vision continued to get worse (just in the left eye, thankfully), even when the inflammation was finally quieting down.  As indicated in my last post, we figured out that the vision issues were being caused by Macular Edema, which is usually treated by Diamox, unless a person is allergic to sulfa drugs, like Anna.  Anna's doctors in Hershey decided to try an oral Prednisone taper (thinking that maybe this would take care of the Macular Edema.)  They were thinking that Dr. Foster might want to do an injection to the back of the eye, which is not without risks, and they wanted to see if this would help before we had to resort to that. 

Good news---because Anna has been on Prednisone, the left "anterior chamber" (correct medical term) was totally clear of inflammation---has been for the past week or so---for the first time since January 2014.  AND, the extensive testing completed at Dr. Foster's office revealed that there has been significant improvement in the swelling of the macula.  I find that doctors don't get overly excited about Prednisone, though---because staying on it long-term is not good (too many side effects), and once a person stops taking it, the problems can come back. 

The tests done at Dr. Foster's office included a "Fundoscopic examination," which was very interesting.  The technician injected a vegetable-based dye into Anna's vein, and then took photos.  The dye enhanced Anna's blood vessels in the pictures.  The "fellow" we had with us on Friday was very nice, and she showed the photos to Anna and me, and explained them to us.  They do show that Anna's blood vessels in that left macular are still "leaking" a little bit---that's what causes inflammation, she explained (and it's fascinating to see the difference between the right eye and the left eye).

Dr. Foster listed four options to treat the macular edema.  He gave us a sample and a prescription for Prolensa--an eye drop--but he told Anna she would need to take it twice a day "without fail," for probably at least 2 1/2 years.  The other options include "sandostatin," which is an injection, I believe, into the buttocks (long-term, and I think he said maybe daily? for several years); "Retisert," which would be an implant to the back of the eye (that would be more long-term than short-term, as well), or "intravitreal avastin" (the injection to the back of the eye).  Both Dr. Foster and the fellow, Dr. Li, cautioned that the Prolensa is very expensive.  I haven't taken that to the pharmacy yet (since we have a sample), but I'm really hoping that the supplemental insurance through the state will cover what our primary health insurance does not. 

Since it's unrealistic for us to take regular trips to Boston for follow-up care, we will continue to see the pediatric ophthalmologist we always see, as well as a retina specialist at the Penn State Hershey Medical Center (so that she can monitor the macular edema with OCTs, etc.).  And of course, we continue with the Remicade treatments every four weeks.


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