Tuesday, November 24, 2009

Brent Update

Oh my goodness, I guess it is high time I updated!

Brent had his appointment in NYC last Friday. The appointment went really well. Dr. Yazici was amazing, kind and very, very smart. He does think it is Behcet's. However, because Behcet's is a clinical diagnosis and doesn't have an actual test, he ordered a ton of blood work to rule out other things. Brent had the blood drawn at NYU Friday and they literally took about 15 different vials. As the doctor said, he does not think the blood work will show anything but he wants to make sure he rules out everything else. He said he is 98% certain Brent has Behcet's. He did start him on one medication, an anti-inflammatory, and gave him a prescription for another. However, he wants to work with Dr. Shelly, the infectious disease doctor, right away and get Brent on some sort of antibiotic. His main concern is that many of the drugs used to treat Behcet's are immuno-suppressors. One of the main ones is Methotrexate. Given the active MRSA infections, he doesn't want him to start the other meds until the infection is more under control, for obvious reasons. We explained to him that that made total sense given our experience with Tyler.

Brent will have to see some doctors here very soon. He needs to have a colonoscopy as well as see an ophthalmologist. Dr. Yazici is very concerned about some of the eye issues Brent is having and wants to have those checked out soon.

We also have to find a new PCP, soon! We do not want to work with our current doctor any longer. We explained to Dr. Yazici how he has treated Brent and he was disgusted. He is also very concerned with how much narcotic pain meds he has prescribed. He does need to have a PCP to work with so he advised us to fire our current doctor and find a new doctor as soon as we can.

There is still so much to digest. All in all, it went great and we feel like we are finally on the right track. Dr. Yazici is very hands on and very open to communication. He told us to email him directly and not to hesitate to call him if we need anything at all. He will need to see Brent every four to six months so we'll be going back again in not too long.

It is a huge blessing to feel like we are finally on the right track. Knowing that we have a specialist on our side, who is willing to help Brent get back to good health, means the world. It has been a long journey thus far and although we are far from the end, we are finally starting to see some light.

Thank you all for your continued thoughts and prayers. We are certain that it is because of the prayers and love from family and friends that we are strong enough to get through this. Happy Thanksgiving to all of you!!


Amy P. said...

Hi, Jodie.

I happened across your blog post, because I have a google tag out for any web postings on Behcet's.

I am originally from W NY (Rochester) and I now live in Massachusetts. I was diagnosed with Behcet's in 2001.

I am so glad you were able to get connected to Dr. Yazici and his practice.

I can help you get attached to many great resources. There is a top-notch eye clinic in Boston, MERSI (www.mersi.us). If there are Behcet's related eye issues, they are the folks to see.

Please drop me a line if you need anything, and stay diligent in your search for treatment and answers, it is your best tool!

--Amy P.

McCall said...

I also have Behcet's. It's no fun, but all the meds (ESP the steroids and narcotics) are almost worse. And then there is the fact that some of the most helpful treatments (like weekly Embrel injections) aren't covered by most/any insurance companies.
I am currently enduring the most severe flare I've ever had (I'm a 36 yr old female with two kids - 1 yr old boy & 3 yrs old girl) I've lost my job, insurance, and sanity.
Drink up all the info you can get ahold of and stay an actively informed, suggestion making, "final say" member of his medical team... Oh, and keep a daily log/journal of what meds taken/when, body feelings, sleep, food, etc. I have a file cabinet full of notes/history and it really helps the drs.
Most of all, I wish you strength and determination to stay strong and by his side. this is one heck of an invisible and lonely disease. Quite the rollercoaster ride.