Ditto, and hope they come through too!! Get lots of rest- your body needs it. Are you also tired because of becoming anemic? Hope you are on lots of healthy stuff for your body to recoup!! Bless you and your family and keep us posted!
On the serious side....Has any one had or know of anyone who has/had
- Thread starter rockin r
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I am still pinching myself! We got a call, an actual call from OU Medical Center today, I HAVE AN APPOINTMENT!!! January 30, 2009 or sooner if they can get me in.!!!!!!!!!!!!! We have read this letter a hundred times to make sure we read it right, and we did!!!! I don't know if I am crying because I am happy or if I am afraid of being disappointed once again... The Surgeon said that they will bring in other Vascular Surgeons to help evaluate what can/can't be done. They have never heard of a 50 year old with this. He said it is "ALWAYS" removed at birth or soon after. They have looked for the surg. who did the surgery 47 years ago, he has passed away. He said that from the first time my Dr. contacted them they have been putting together a team, but did not want to tell me in fear that they could not get one together. They have been monitoring me thru my Dr. I asked if it could be done outpatient, he chuckled. So I guess not. I do sooooooooooooooooo hope this is not a dream. He told me the same thing, if I start to bleed and it won't stop come to them and they will send an ambulance to meet us on the Interstate. He said that from what he has seen on the MRI's it is very bad. But they do feel confident that they can at least remove the ovarian artery (what is left of it) and the ovary, but he emphasized that it depends on what else the vein is attached to as to whether they can or not. He said it is like a HUGH umbilical cord running rampant in my body attaching itself to organs producing numerous tumors. One or more of these tumors are rupturing. We still have a long way to go, but maybe they can patch and repair for now. I truly do not think that I will be able to hold out till Jan 30. The pain is crippling. But now I know I have a place to try to help me and when it gets that I can not tolerate it any longer I will go. Thank you to everyone for their prayers and support, this is a wonder family, Art and I know that first hand.
Reijel's Mom
Well-Known Member
Prayers coming that you get in there MUCH sooner, and not based on any emergencies!
shadowsmystictopaz
Well-Known Member
a long time ago i watched shows about what you have. Its a very dangerus thing to have as it can take over your lungs and make it harder to breath. please see if you can contact discovery health and find out if they could put those shows back on for your referance so you can contact the doctor who did the surgerys on the people who have it. or contact direct tv they would know what shows it is and they can probaly tell you what its called. Also go on discovery health.com and do some research there it might be helpful to you. i hope this helps.
shadowsmystictopaz
Well-Known Member
a long time ago i watched shows about what you have. Its a very dangerus thing to have as it can take over your lungs and make it harder to breath. please see if you can contact discovery health and find out if they could put those shows back on for your referance so you can contact the doctor who did the surgerys on the people who have it. or contact direct tv they would know what shows it is and they can probaly tell you what its called. Also go on discovery health.com and do some research there it might be helpful to you. I just found a few discovery health shows if you go look it up you will find Dr. Hochman he might be able to help you. Goodluck with your search.
shadowsmystictopaz
Well-Known Member
http://www.birthmark.org/hemangiomas.php there i just found that it should help.
BCODY also sent me this link...I have called and talked to Dr. Warner. He could not help me. He refered me to Dr. Konez, which I have never heard back from, and not from lack of trying. After numerous calls, we gave up. We are holding on tight to OU, not that we are not still looking into other options and a quicker appointment. Thank you for taking your time to find this for me....As I said before, we follow up on every thing that is sent to us....Thank you...Theresa
ray
Fred
Well-Known Member
Prayers for you Theresa and I hope with all my heart this works for you. I know right now my horses and family keep me going and without them and the beautiful forum family we have we would be lost. Love you, Linda
Oh Theresa, this is so awesome!!! I hope too, that they can get you in sooner and you dont have to wait that long and dont want you to have to have an emergency trip there- that would just be 'too much'!! Prayers are with you and keep us posted! We know you will. Hugs and so glad you got this letter- at least they are working on it!!!!
Equuisize
Well-Known Member
That sounds optimistic Theresa.
Keep the Christmas spirit alive in your heart.
I am keeping you in my prayers and thoughts.
Keep the Christmas spirit alive in your heart.
I am keeping you in my prayers and thoughts.
Connie P
Well-Known Member
Theresa - I pray so hard for you every single day. I just know you are going to get the help you need and you are going to be ok. HUGS HUGS and more HUGS! Hang in there - you can do it. I just know you can. There are a whole lot of us out here rooting for you.
