A wife’s Perspective: Betti

On July 4th of 2003, Bob and I had gone to Biloxi beach for the holiday. While driving to Biloxi he started having problems seeing, he kept cleaning the windshield because it looked too dark. On the beach we had to come inside, even early in the morning, because the light was blinding him. After we returned home he started seeing double if he tried to drive. He had always had better than 20/20 vision, so this was a shock to us.

Bob’s dry eyes were treated with punctual plugs, eyedrops, and Muro 128 drops and cream. He was started on drops for glaucoma, as his pressures were in the 30’s. Instead of getting lower, his pressure increased and he was referred to a glaucoma specialist. One ophthalmologist kept saying, “I have never seen anything like this.” “His eyes look like acid has been splashed in them.” A roller coaster ride began for us that lasted from July 2003 until May 2005. Eye drops did not bring the pressure down, so he had laser surgery to allow the fluid to circulate. This helped a few days to a week or so, and then the vision would go again. This same pattern repeated itself, with varying lengths of time being able to see a little before losing all vision, but counting fingers or seeing light. The miraculous intervention by his glaucoma specialist was putting Ahmed valves in each eye to circulate the fluid. It brought that pressure down at last and allowed him to have pretty good vision in the left eye for a couple of months and some vision in the right eye, though it was marginal. Then in February or March of 2004 the vision went completely again, this time his glaucoma doctor removed cataracts from each eye, and placed interocular lens in each eye. Again the vision improved a few weeks, and then went again. By this time Bob had given up hope and was losing the will to keep fighting. He was losing his will to live.

About March or April of 2004, the glaucoma specialist noticed that the reason Bob was losing vision this time was that he had IRITIS. Iritis, what was it? What does it mean? The glaucoma specialist started Bob on some eye drops, steroids. This seemed to help for a couple of weeks, and then the vision went again. More drops were added, and again they helped a few days or week or so and then vision deteriorated again. Eventually his glaucoma specialist sent Bob for an evaluation with a retina specialist to see if he could inject the eye with steroids, and for a consult.

Thank God for this website. I lost sleep many nights, during the time Bob had been struggling to save his sight. At 4am one morning I found this website. I posted my concerns and Liz answered. She told me there were no Uveitis specialists near us. The only way to help Bob was to contact Dr. Foster and see if he could help us. She recommended at least a consult with Dr. Foster to see if he could help Bob. I am not used to dealing with decisions about medical care, and I just assumed that if doctors were not specialists in certain disorders they would automatically send you where you need to go. It was a bolt out of the blue when I starting thinking that we would have to travel to get expert advice. I was overwhelmed, how could we afford this? How could I get away from my work? What was this Uveitis/Iritis thing anyway? Why don’t the doctors here know how to treat it?

Fortunately, I found this website before Bob went to see the retina specialist. I sat in shock in the office, as I heard the specialist say that Bob had a lot of stuff in his vitreous, and that he needed a vitrectomy, and that it would be too dangerous to have the vitrectomy. He said the glaucoma valves and the inflammation and the compromised cornea in the left eye, all made it too dangerous to have the surgery. He said it would possibly even cause him to lose one or both eyes. I was stunned, and devastated. He had basically told us to go home and let Bob stay legally blind, and the only alternative was a procedure that would possibly give him worse results. I told him I wanted a consult with Dr. Foster. He said Dr. Foster would tell me the same thing, and “don’t let them do the surgery up there.”

I came home and posted the news on the website. I cannot remember if I told you all in those posts that Bob wanted to give up and end his life since he could not see to do the things he loved anymore. I did tell Dr. Foster. It was the most terrifying thing in my life so see my husband want to give up and end his life. I did tell you all how serious his vision problems were. Liz and Cathy and Mike and so many others were so supportive, and they told me to contact Dr. Foster right away. I remember Dr. Foster was out of town, but he answered my email about getting Bob to him, right away. I remembered how shocked I was that he was so concerned and helpful about Bob’s problems, and would answer right away. I remember he said to have the person scheduling the appointments to get us worked in as soon as we could arrange to get there.

Everything started changing as soon as we started seeing Dr. Foster. I will never forget that first visit. Parts of it are hazy, because I was feeling so tired and overwhelmed from all we had been through up to that point. Dr. Foster had faith he could do the surgery for Bob, and he wasn’t just going to do a vitrectomy. He was actually going to test the vitreous material to see if lymphoma or infectious agents or other causes might be there.

This journey has been terrifying at many points, and that first visit to see Dr. Foster brought some unexpected worry. I remember Dr. Foster told us it would be important to rule out “lymphoma” or masquerade syndrome. I had a vague notion about lymphoma, but it did not quite settle with me what it meant. Dr. Foster was so reassuring and so self-assured as he talked to us, that it did not quite overwhelm me as we sat there so many miles away from home.

When we left Dr. Foster’s office we went to the cafeteria. Bob had trouble walking because his vision was so impaired, but I had to go somewhere to sit and let things sink in. I realized as I sat there that I was overwhelmed with feelings and was in shock. What was lymphoma? . How would I convince Bob to come back for surgery? He came on this visit because his trusted glaucoma doctor convinced him. What would I do if we had an emergency here far from home? I know all the emergency facilities at home, what about here? How could we afford another trip and to stay two weeks for the surgery? I felt faint, and I was also tired from more than a year of that journey when Bob had gone from better than 20/20 vision, to seeing only light, to counting fingers. Those ups and downs, of some horrible roller coaster were unbearable. During that journey, loss of job, and loss of income, and loss of insurance, made the ride even more treacherous. So here I sat, looking at a beautiful river, with hope again, but so many unknowns. How could I fight back the tears so Bob would not see them?

I got my second breath, and energy returned to hold back the tears. Now what? Bob could not possibly navigate those stairs over the road nearby, and he could not walk fast enough to cross the street at traffic lights. Strange that something so little could open that dam of tears back up. I burst out in tears while standing talking to someone at the security office. They called another angel, a social worker, I don’t think that was when I first met Gayle Golden. I think another social worker helped me out that first day. She gave me all the emergency numbers for the area, and talked to me until I was feeling much better. She gave us a voucher for a cab and someone called it for us.

Liz came by and had dinner with me one night during that first visit, and stopped by the room to see Bob. Bob, the recluse, usually does not let anyone see him, but he was appreciative of all she had done to help us, and so he managed to come out of his shell and meet her.

Bob did agree to go back to have the surgery. It must have been difficult for him to realize there was someone as gifted as Dr. Foster who could help him. I think that when Dr. Johnson, Bob’s glaucoma doctor sang Dr. Foster’s praises, and told Bob he was going have miraculous results Bob finally believed it was really true.

It was amazing when Dr. Foster did that first surgery, at the end of August of 2004. I was terrified. Galye Golden met with me to have coffee while Bob had his first vitrectomy. She was wonderful, such a Godsend. You cannot imagine how terrified you remain once a specialist predicts an operation will blind someone you love. I realized that Dr. Foster was the best in the world. I realized he believed he could do the vitrectomy for Bob. However, when you have no experience with medical interventions, you don’t know what it means. Was there a 40 percent or 80 percent or some other chance of success? Once someone clearly paints a picture of losing your eyes if you have an operation, it is hard to visualize other possibilities. So even though I was grateful we had Dr. Foster to do Bob’s surgery, it was still terrifying during that first procedure. I could not get that picture so clearly painted by the retina specialist out of my mind. Would he lose his eye? Gayle sat with me and helped me through the whole thing.

The results of that first surgery were amazing, of course. Bob regained vision in that right eye. Dr. Foster and his fellows seemed as excited as we were as Bob began to see better again. When we returned home, Bob’s glaucoma doctor sang Dr. Foster’s praises, saying he had never seen such beautiful work. A couple months later the vitrectomy was done on the second eye. The results again have been amazing. Bob was seeing again. He was hopeful again. By the time of the second vitrectomy, I was no longer as afraid of the outcome, as we knew first hand how miraculous Dr. Foster’s interventions could be. But it was reassuring when he came out to tell me all had gone well, and explained what to expect and what Bob would be facing the next few days while we were there and afterward. By the time of this second operation, Bob knew that Dr. Foster was his angel, as Bob always calls him now. So Bob’s confidence and hopefulness and healing even surpassed what I had expected.

After the second operation, Bob started immunosuppressant therapy to keep the inflammation from returning. He is now on chlorambucil. His sight varies, the best it has been is 20/30 and 20/25 with pinholes on a recent visit. No longer legally blind. He can read! He can work in his yard with the trees he loves. He can recognize me and his cat (two loves of his life he says). He is even working again, from home, and we actually pay our bills again. What miracles.

What an angel Dr. Foster has been to us both. I had given up hope and Bob had too. Bob says he feels Dr. Foster has given his life back to him, and I feel the same way. Seeing Bob able to have an interest in life again and seeing him working again has been the greatest miracles on earth, at least to us. I hope that others, who feel there is no hope will reach out to get help and not give up. There is hope and there are real miracles. I do truly think there are angels on earth, and Dr. Foster is certainly one of them. Liz and Frances and Mike and Cathy and everyone on the support group website are also my angels. I cannot imagine how I would have had the courage to keep going and not give up without their help.

I am always sure that whatever is wrong and whatever needs to be done to continue to help Bob retain sight, Dr. Foster will find it and have it done when Bob sees him. I used to wonder how we could afford to make the journey to Boston, now I cannot imagine how we could not afford it. It has given our life back to us. We both think that we are so blessed that Dr. Foster works so hard to be available to us and to everyone who needs him. I cannot imagine how it is possible for him to help so many who would have lost vision without him.

It was also such a delight to meet in person many of the people who had been supportive of us at the Walk for Vision last year. It was so amazing to feel that Frances and Dr. Foster made us all feel like we are part of their family. I will never forget that wonderful walk along the river with friends who felt more like family than our own families. And I could not believe it when we were all invited for that wonderful clambake. The conferences for patients and for physicians were so well done and gave me so much more information to chase away the dark fears and replace them with understanding and hope. It was one of the nicest feelings I have ever known to have time with everyone there during the Walk for Vision and Clambake.

We will never really be able to fully describe this miracle, and I know Bob is going to write his story, and he is a much better writer than I am, but we are eternally grateful for the miracle of having the assistance of Dr. Foster and the support of everyone here at this website.

Betti Giles, Wife of Robert T. Giles (Bob)

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