Maryka

MaryKay,
Its Colleen from the boards. I'm having surg on wed. have to bridge with lovenox. Scared. New cardio (my old one moved away) I inherited wants me to stop coumadin as of yesterday (I did) (9/3) and start Lovenox today. (I did 9/4) What range do I have to be in for them to go ahead with surgery??? Cochlear implant. Thanks in advance!

Hi Mary! Thanks for your posting! I would definitely like to hear about your experience with Dr. Cameron. I've heard so many nice things about him, especially from different people here on this forum. It definitely makes me feel more comfortable with the surgery. Right now I'm waiting to hear about a surgery date. I'm trying to get it done in January, unless he wants me to do it sooner.

Oops! I get confused! Hello to Colleen!

Welcome back! I will disappearing for a while myself when next week I drive down to North Carolina where I will have my right hip replaced at Duke Medical Center. I am going to NC because my friend down there (who has MS herself) has a handicap-adapted home and is happy to have me recover there. (My local kid does not offer me any recovery help. My Philly kid has a 100-year-old house that has nothing but stairs and other problems.) I think, if I cannot go to Hopkins, I have found a great alternative with Dr. Attarian at Duke.

The cutie is my grandson on his first birthday. Now he is 2, but looks like he will keep his blonde hair and blue eyes.

Hi there Mary. How are you. It is Colleen here. Hope you remember me! I have been off the boards for a bit, trying to work part time. FAIL!!!! I am at home now, so you may see me around more often. Just wanted to stop and say hi. Who is the cutie in the pic with you?
Colleen

Hi Maryka, Just wanted to tell you how much we loved Dr. Cameron. I feel so good about him doing my son's surgery. He just seemed so kind and gentle. Thanks for your help.

Thanks for getting back to me, SuperBob!

Hi Maryka,

Sorry, we've only lived in South Carolina for a year, so I don't have any info to pass along about orthopedic surgeons in NC/SC. Sorry to be so tardy in responding. I just checked out my profile (don't come here that often) and found your message.

HI Mary, Wanted to be sure you saw this video by the NMF giving Dr. Cameron the award. I know he did your surgery and we are strongly leaning toward having him do Colin's. http://www.youtube.com/watch?v=DG0iiDTbZ1Q

HI Mary, Was your friend Carol ever involved in the Marfan group I had going for awhile? Can't remember if you said she has Marfan or if it was her husband. My last name is Shields if you talk to her and want to ask her. Hope all is well, Barb

Hi Mary, I am actually leaning towards Dr. Cameron. He was given the Antoine Marfan award by the NMF last year so that makes him dear to my heart. We took Colin to JH for many years for both his eyes and his heart. I really do love the quaintness of the offices. I remember Dr. Pyeritz had one that was all wood and seemed so cozy. I also got to know Baltimore quite well and the drive is not too bad from here. I recall it's only about 5-6 hours. I am calling his office this week. Thanks, Barb

Hi Mary, I am still trying to figure out the ins and outs of this message board. Hope I am posting messages to you to the right place. I went to a couple of conferences at Hopkins. Who knows? Maybe we even sat next to each other. The early ones were a blur to me. So much to take in. Dr. Cameron is high on my list of surgeons to do my son's aortic root? Were you happy with having the surgery done there? Thanks, Barb

Hi Maryka, I noticed on one of your posts you mentioned that you once started a support group for Marfan. I did too, when my son was diagnosed 20 years ago. I kept it going for awhile, but nobody else really wanted to help with alot of the work, so I stopped getting meetings together. With two kids and a teaching career, I just couldn't do it. Now, I am a telephone support person in my area and the NMF will give people my number if they need to talk. Are you still involved with Marfan activities? Take care, Barb

Mary, Sorry to hear of your money situation. Cobra is so expensive. My husband was laid off 2 months over the holidays (Thanksgiving and Christmas) so I know what you mean. The shot it the hip sounds horribly painful, not to mention the cysts in your hip socket, OMG. Hope this finds you feeling somewhat better. As for the question about a professional singer, nope you must have me confused with someone else. I was a proofreader for our local paper, 4 nights a week. They just eliminated my job and alas, I too am out searching for employment. Best of luck in your search. Feel better soon. Oh, and Hopkins said I am a candidate for Cochlear implant, but the copay, even with health insurance, is $11,000....so that is why I am getting hearing aids!
Colleen

Hello,
See that you are from grandview, i myself grew up and graduated in 1980 from grandview. Ive been lurking on here for some time now but recently joined. had my BAV with stenosis replaced at Cleve clinic in 1999 with a homograft. Worked well for years but now am having some difficulty with shortness of breath. local hosp and cardiologist state after testing i need to have it replaced within the next 6 months or??, not sure. Anyway I am currently seeking to have a 2nd opionion at Cleve again. 1st appointment coming in april with Dr Griffin. not sure how or what type of vale to have replaced with, but I do know i don't want to have open heart again in ten years. so i have a lot of homework ahead of me. anyway just wanted to say hello.

Hi Mary,
Im ok...been busy...INR has been up and down. I am trying right now to get appt to get hearing aids. Had hearing loss since I was younger and I want new aids. The audiologist said I have profound high pitch and speech understanding loss, so he wants me to get ruled out for cochlear implant. Have appt (where else?) at Hopkins HEaring Center on the 23rd. My husbands chest pain is gone with the addition of a baby aspirin a day. How have you been?