Dianne & Jeff's Anniversary
Today was the visit to the Lupus specialist at University Hospital, Dr. Sterling West. Dianne, Jeff and Rebecca were all there. He did a very thorough analysis of her charts, and records. He asked a lot of questions and did some physical examination. Dr. West gave us a lot of information and a great plan to move forward with. He did conclude that he thought Dianne had Sjogrens Syndrome. This is something Dianne had heard of before but thought it was related to tingling fingers. This diagnosis does help to explain a lot of the symptoms/side effect she was having. Dr. West said there was a couple of options for treatment, and Dr. Tran will follow up with this.
Dr. West did want to do a celiac disease blood test. Dianne has thought she has had celiac but has never had it officially confirmed. They can do this by blood but it's only 95% accurate. He did say that if it comes back negative, they might possibly do a biopsy of the duodenum. This is the only accurate way of telling if she has celiac or not. He also wanted to do a bone density test, we are not sure when this will be performed.
We did look at the MRI together. Dr. West pointed out the "white spots" that the previous doctors have mentioned on the MRI. He says that he will want another MRI in May to see if there is more change. He did attribute these spots to Dianne's Lupus.
Dr. West talked about the MAC (the macobacterium lung infection, they all refer to as MAC) and the lupus medications. He emphasized the tricky situation with suppressing the immune system to help the lupus flare, but also needing the immune system to be active to help the antibiotics fight the MAC. It seemed that the plan that Dianne is currently on with the prednisone and the antibiotics is the most appropriate route, according to Dr. West.
He explained that the plaquenil could affect Dianne's ability to see red and the emthabutol could change her ability to see green.
We were given instructions from Dr. Tran (and Dr. West confirmed this) to admit Dianne to the Longmont hospital, should she have another "incident". Dr. Tran is to be her primary doctor when admitting and then they will transfer her to University Hospital where Dr. West and his team will manage everything. Hopefully she won't have another incident but it's good to know there is a plan in place, should this happen.
Overall, the visit with Dr. West was very informative. He did go into a lot of detail and by the end of it all of our heads were spinning, but we felt like he has a really good hold on the situation and knows what to do. He is passing all of his information in a full report to Dr. Tran. We'll get more information at Dianne's next appointment on March 24th.
Dianne weight in at 92 lbs. This is up a little from Tues appointment. She is weak, fragile, and unsteady but has shown significant progress since her discharge from the hospital. She thinks clearer but we're still uncertain about her ability to do certain tasks.
