12-17-12: My Fourth Visit (RP Diagnosis)
Today is the day to see Dr. Schwartz and get the “official” prognosis. Hope I am able to absorb everything. My husband Jim is with me. Mom and dad wanted to come, but Mom is sick and since I am having surgery in two days, I am being cautious. Jim and I had a divine lunch at Skylight Gardens right around the corner from Jules Stein. I’ve been having heart palpitations all day at the thought of what they are going to tell me.
1pm-appt arrived on time. Now it’s 120 and appointment was for 1 and I pray we aren’t kept waiting forever like last time. Mom wants to be on speaker to hear what the doctor said. I laid down on the couch in the waiting room and dosed. My left shoulder is killing me and I do not know how long I can sit on uncomfortable chairs and wait. I honestly cannot wait to have the shoulder replacement in two days.
The Waiting Game
1:45pm-tech did basic exam and dilated my eyes and sent us back out to the waiting room.
2:20 pm-a resident came in to look in my eyes and said Dr. Schwartz and the team have allot of stuff to review-it will take a bit.
4:40 pm-still waiting in the room. We could not hear a peep outside the room and were exhausted after waiting there for over THREE hours! Dr. Schwartz knows I am having a shoulder replacement in 2 days and am in SIGNIFICANT pain. Surely, no physician would let a patient in so much pain wait on purpose! We heard no sounds of movement outside the room and with the holidays a week away didn’t know if they had closed already. We were sure everyone had gone home for the day since it was so quiet. Not sure what to do, Jim looked out the waiting area door and it was a ghost town out there. So he opened the door where the doctors all entered from. There was no sign on either door so we were clueless what was behind it. Jim barely pulled open the door and Dr. Schwartz came charging through it and ripped the door knob out of Jim’s hand then slammed it in his face!Then came back in and blasted my husband:
“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”–Dr Scwartz
I was in so much pain, so tired from the wait and felt physically threatened by his shear size and rage. He is a tall man-probably over 6 feet and at 5’2′, in pain, tired and nervous, it did not take much to upset me. But just as quickly as he bullied my husband, he very gently touched my shoulder and said they were just trying to find the labs I had done. He asked if I had them done and I told him yes, I had them drawn 2 weeks ago. Then he switched back to caring doctor mode and very gently reassured me he’d be back in shortly. But it really upset me that he yelled at MY HUSBAND like that and I could not stop shaking and crying. I figured I would cry that day, but not because my doctor bullied my husband! Jim told me to calm down and tried to downplay it so I would calm down. I did my best to calm down.
I was in so much pain and so upset
I was VERY upset and it made the rest of the appointment much rougher than it would have been otherwise.
5:10-Dr. Schwartz and his fellow finally came in the room. I told him my mom wanted to listen in on the call and his response: “I don’t do that- [talk to patient families] you’re a nurse; you can tell her what we talked about”.
“You have retinitis pigmentosa plus ‘something else’ but we don’t know what it is. Your ERG wasn’t totally flat as we expect with RP so that makes me think there is also something else going on. But I will to figure it out. I’ll be taking your case to the “obscure cases” board to discuss with other colleagues.”—Dr Schwartz”
- I asked why my retina was degenerating along with my joints. He said he can’t prove it but knows in his gut there is a link. He vowed to figure it out.
- My vitamin A is a little low but he doesn’t want me to supplement yet. He wants me to take Diamox after my shoulder surgery and pending my orthopedic surgeon’s approval after my shoulder replacement. Diamox is thought to halt the progression of the disease but they don’t know how much. He said it might have some “AWFUL” side effects and that is why he wanted me to wait until I was stable after surgery.
“You can’t drive ever again. It’s just not safe”. “You only have 10% of your visual field and you have had an angel sitting on your shoulder. It’s a miracle you didn’t injure or kill someone or yourself”.
(To his fellow) “Make sure you note in her chart that I told her to stop driving”.Dr Schwartz
- I am to return in a month and we will discuss visual rehab programs. Jules Stein has one as well as other resources. The goal right now is to get through my shoulder surgery then return in a month to begin planning visual rehab and figure out how to live with my limitations so that I’m safe. He said there is a “boutique” at Jules Stein with visual aids and it’s only for health care professionals.
- I asked him how long I will keep my vision and he said he fully expects I will always remain “sighted” on some level. What he can’t tell me is how much vision I will lose and how fast I will lose it. He will monitor me over the next 9 months after I start the Diamox and that will give him a trend line so he can plot the rate of progression that I can expect over my lifetime.
- I can use my eyes; he doesn’t want me to think I need to rest my eyes. He urged me to continue living normally; working on the iPad (it was in my lap where I was writing notes), and my phone, computer, reading, TV, whatever. He said it will be critical to my emotional state to keep these as normal as possible.
There are several gene therapies on the horizon and I’m hopeful that you’ll be able to benefit from them.
When you return, I want you to meet with a genetics counselor. I also need you to bring me your family tree and have your daughters come too.Dr. Schwartz
- He ordered labs- anti-retina antibodies. His Fellow saw us out and I got him to let me get the labs drawn at home with the promise that I would bring him the results to the next visit.
- Dr. Schwartz asked me if my vision problems started before my gastric bypass and I said they had. He said that gave him hope and indicated that it might mean my RP would be a slow progression.
- At one point, he mentioned other eye diseases and brought up Macular Degeneration. That reminded me and I told him that Jim has been told he has MD. He told me were not here for him. He said that today was all about me. He wants me focusing on ME right now and ONLY me. He said we will delve into that later.
The disruptive physician
I was crying throughout my whole discussion with him. Frankly, he scares me. I am not sure if he cares about his patients or not. His actions when in “nice” mode feel hollow. He can make me feel like I’m the only thing that matters one minute then is abrupt and downright dismissive to me and/or my family and treats his fellows, residents and staff like they’re dirt on his shoe. When talking to them, he is an arrogant son of a bitch, then turns around and does the tender, caring physician role with me. At times, he seems like he feels he only needs to talk to the patient and feels family members aren’t his problem. If that is the case, he and I are going to have a difficult road ahead. I don’t care how phenomenal a physician he is; if he can’t include my support system, I am not going to respect anything he has to say. Having said that, I do trust his clinical judgement based on his reputation and achievements.
I apologized for crying and that seemed to flip him back into the “empathetic physician” mode:
RP is a very difficult diagnosis to get and it’s okay that you’re crying. You need to cry – you have allot of your plate right now. You are about to go through your 2nd shoulder replacement in 6 months, which isn’t an insignificant surgery. I want you to take one situation at a time. The next 9 months you have allot of new things to learn and right now, I only want you to get through your shoulder surgery. Come back in a month and then we’ll start tackling the other stuff.–Dr. Schwartz
We left the room, checked out and I pretty much sobbed through the whole way home. We were on the road for well over three hours so I called my parents, Karen and my daughters on the way home. When I got home, the girls were waiting with a bottle of wine. We drank, cried, and tried to absorb it all. Jim was so blown out and exhausted, he skipped the wine and went straight to bed.
At the end of the day, I could not decide what was more frightening; Dr. Schwartz telling me I was going blind or the trauma of having Dr. Jekyll for an ophthalmologist.