Results/plan from Cleveland Clinic

[briansmom]

As many of you know, Brian and I went to CC a couple of weeks ago. Yesterday, we finally got a plan. CC still doesn't have a diagnosis for us but they talked to Brian's doctors from home and came up with a plan based on everyone's best guesstimate. Unfortunately, they have decided on steroids - starting at 80 mg per day and tapering down from there. They are also going to put a drug eluding stent in his renal artery. If his renal artery stenoses again in spite of all of this, they will do a renal artery bypass using the artery from his spleen. CC is leaning toward a diagnosis of Takayasu's arteritis which has no cure but lifetime steroids keep it at bay. They also want him to have the genetic test for Loey's Dietz because he has a few Marfan characteristics.

One definitive answer that they did give us was that they would not hesitate to give Brian a heart transplant. Brian will eventually need OHS to fix his bypasses, but I don't know if his heart can handle another OHS. I am going to schedule a meeting with his surgeon to talk about this. Brian's EF is 25% which would probably be ok for longer than his bypass will last.

Brian is feeling ok, he even went to Baja this week for the Baja 1000 off road race. My husband was racing so Brian went down to pit for him.

I really hope that Brian gets a break soon.

Thank you all for your continued prayers and support.

 

[Marguerite53]

Well... it is good to have information. It is good to have a plan. It is good to have a large handful of some of the most capable doctors in our nation collecting their wisdom and directing it toward Brian's safe-keeping.

Maybe the steroids will be wonderful!!! Let's hope!! If he gets a definitive diagnosis of Marfan's then there's more information. And enormous support, too. I have been on their mailing list for a few years now since I thought perhaps on of my boys might have some of the characteristics. (haven't really pursued that; just read a lot of info and for now, it seems not to matter in his case). It is quite an active group.

I hope he has a great weekend with his dad at Baja!! A good rest for you, too, Mom.

Keep the faith!! You have an amazing family.

Hugs.

Marguerite

 

[hall]

I am glad you have some answers from CC. I will keep Brian and you in my prayers. God Bless.

 

[zipper2]

Continued prayers from my end for all of you

 

[Mileena46]

Add me to those praying for you and Brian! I hope things start looking up for you guys soon!

Mileena

 

[Jackie]

My continued prayers for Brian (((HUGS)))

 

[Andrew'sMom]

Prayers continuing here also.

 

[francie12]

I will continue to send prayers your way. It is reassuring that you are in the hands of the Cleveland Clinic--when it comes to the new and the best, they are ahead of the everyone else. Glad that Brian is out enjoying with his dad. All the best. You're an incredible mom and patient advocate.

 

[ShezaGirlie]

You're an incredible mom and patient advocate.

Isn't she brave too. My heart just goes out to all the young moms on here who have the hardest job on earth and do it with such grace..

 

[Lily]

Isn't she brave too. My heart just goes out to all the young moms on here who have the hardest job on earth and do it with such grace..

Well, said, Janie. Continued best wishes, Deanne.

 

[BDMc]

Deanne, I'll just add that I'm keeping you all in my prayers too. Did Shane go as well? Hope you have a wonderful holiday! Brian