# On the serious side....Has any one had or know of anyone who has/had



## rockin r (Nov 28, 2008)

had since birth, or developed them soon after??? I have been having serious health problems for the last 3 months. I was born with a tumor (that was engulfed in vericose veins). 47 years ago, The vericose vein ruptured the tumor and it was removed, ( the tumor had grown to the size of a softball) opened me up hip to hip. But the surgeon had never seen anything like it, so they left behind the host vein in fear of it....This vein has caused 2 surgeries since then. Fast forward to 3 months ago....Started to have problems with my kidney, had an MRI done, results...3 cysts in the left kidney and a dime size stone. I only have a left Kidney. The right one functions at less than 15%, I had E-coli in 2000 and it destroyed the right kidney and some of the left one. Also found was this D*#!n varicose vein has reared it ugly head and turned my ovarian artery into a huge varicose vein and it is strangling the ovary. The ovary has formed a cyst around it to try and protect itself, but the fluid in the cyst has become toxic. If it ruptures I will become systemic. I only have one ovary, when I was 24 I had cervical cancer and had a hysterectomy....The Dr. sent me to a Vascular Surgeon. More MRI's... The Host vein is attached to my heart and other organs, including possible the colon. Dr. said it was like a spider web of sorts. IF it is attached to the colon I could lose the vast majority of the colon. I am awaitng to get a colonoscopy done to see how much damage there is. I am not looking for sympathy. I'm looking for ANSWERS...I am VERY optimistic about this. I have dealt with this all my life. What I am looking for is someone who might know someone who this has happened to, and what the out come was. I have surfed the web countless hours every night, seen pictures, and most outcomes are not the best odds. I am told this is very rare and they are not sure what to do for it or me as this host vein has been in my body for 50 years. They said if this ruptures I could bleed out, if I did not get to the hospital ASAP. Apparently no one (Drs.) knows how to remove this vein from my heart, or the other organs.....So they are conferring with out of state surgeons... Anyone?????? I am sorry this is soooooo long, but I just need to get some answers to this!!! I have not told Art the "whole" truth, till I can find out more about this, he will just worry himself to death.......

This is the web site the Vascular Surgeon(s) gave me..

This is what it is called..........Cavernous Hemangioma: Rare Disease

Office of Rare Diseases (ORD) of the National Institutes of Health (NIH)

Cavernous hemangioma is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Cavernous hemangioma, or a subtype of Cavernous hemangioma, affects less than 200,000 people in the US population.

Source - National Institutes of Health (NIH)

Cavernous hemangioma: A vascular tumor preponderantly composed of large dilated blood vessels, often containing large amounts of blood, occurring in the skin, subcutaneously, or both, and also in many viscera, particularly the liver, spleen, pancreas, and sometimes the brain. The typical superficial lesions are bright to dark red in color; deep lesions have a blue color. A cavernous hemangioma in the skin extends more deeply than a capillary hemangioma and is less likely to regress spontaneously. (Dorland, 27th ed; from Stedman, 25th ed)

Source: Diseases Database (The blue one in color is what I have.)

These tumors are benign by cell type but can have serious consequences. Cavernous hemangiomas are wild, jumbled growths of blood vessels fed by numerous tributary arteries (making surgical removal extraordinarily difficult and risky in most cases). They are probably all present at birth, but start to enlarge rapidly after delivery. They may attain great size and cause significant disfigurement or even impinge on vital organs or the airway.

Aside from disfigurement and possible problems caused by the sheer size, the tortuous blood vessel channels within the hemangioma cause the formation of platelet clots. These clots can consume platelets so rapidly that the bone marrow cannot keep up with production, and bleeding may develop elsewhere in the body because of severe reduction in the level of platelets in circulation.


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## rockin r (Nov 29, 2008)

Thanks everyone for reading my post...I was hope full that some one might have some insight to this monster....I will continue along with the Vascular Surgeons and see what happens. I am hoping to put anything off till next year, if it will allow it. I know that if it ruptures, it will not be good. I guess I better tell Art what is going on, but I am going to wait till after Christmas if possible, (his father passed away at Christmas time, so this is a difficult time of year for him). Again, Thanks to all who read this post...I know if anyone had anything to offer they would have....Theresa


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## SilverDollar (Nov 30, 2008)

Theresa, I'm so sorry you haven't been able to get more information. I wish I had some for you. It's great that you are optimistic for treatment and understand why you don't want your hubby to know just yet. Keep searching...I just know the answer's out there. The internet is great for finding the information you need. I'll be thinking good thoughts for you.

Rebecca


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## Brandi* (Nov 30, 2008)

It's a shame that with all of the knowledge today they still don't have everything figured out. I sure hope someone reads this that might possibly have some info for you. Please do keep us posted. Your optimism is inspiring and contagious


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## REO (Nov 30, 2008)

Theresa, you know all I have to offer is my friendship, support, prayers and love. And you know you always have those from me.

I'm always here if you need me.


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## Barbie (Nov 30, 2008)

Theresa-

Wish I had some knowledge to send you. Have never heard of this. Please take care of yourself and if you need something done before Christmas, you better do it.

Sending prayers for answers and good treatment.

Barbie


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## bcody (Nov 30, 2008)

Theresa,

i ams orry to hear what you are going through. I have heard of hemangiomas before, and when I worked in Boston in the OR saw some cases of them, but never the Cavernous Hemangioma. I hope you can find some answers.

this site Website is some specialists in New York. They seem to deal with mostly hemangiomas, but are vascular specialists, perhaps they can help you find someone who has treated this before?

I will keep you in my thoughts and prayers and hope you can get some help.


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## bcody (Dec 2, 2008)

Hi Theresa, Just wanted you to know I was thinking of you.


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## bfogg (Dec 3, 2008)

Hello Theresa.

I hope you can find the Drs and information you need to help you get better.

Hugs and prayers,

Bonnie


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## REO (Dec 3, 2008)

Bonnie (and everyone) if you can say prayers for Theresa, please do! Things have gotten really bad for her. She's been going to the hospital.

Please send her all the prayers you can!


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## Marty (Dec 4, 2008)

Message from Teresa:

Teresa is unable to access the forum. She says thank you to all for your love and support. She is in a life threating stage right now and needs emergency surgery immediately. Her condition is extremely rare for an adult and they cannot locate a vascular surgeon anywhere in the US who will be able to operate. Her doctor and she are scouring the countryside for a vascular surgeon that will attempt this surgery but so far, no luck. Please keep Teresa and her family in your thoughts and prayers.


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## bcody (Dec 4, 2008)

Teresa

You know you are in my prayers.


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## Bunnylady (Dec 4, 2008)




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## HGFarm (Dec 4, 2008)

OMG, have never heard of this condition!!!

I ended up having a partial hysterectomy years ago because of enlarged veins in the abdomen that were 'strangling' my uterus- and it was extremely painful..... but it is not like what is described here!!

Theresa, we are all thinking of you and wishing you the best and a quick recovery!! Prayers and love coming your way!! Marty, I am sure you or someone, will keep us posted! Please recover quickly!


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## REO (Dec 5, 2008)

Theresa is a real life very good friend of mine and I'm worried sick about her! I feel so helpless to do anything to help. I got an email from her last night and she didn't sound very well.

(Scared the crap out of us)

Please pray for her!


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## rockin r (Dec 5, 2008)

Well, I finaly got on, hopefuly it is fixd. Thank you to evryone...There truly is no place like th forumm. I havebeem at Drs and hosp for the last few days. MOnday I woke up in a pool of blood, bleding out my nose, I am stillbleding but it has slowed down. I am alittle weker every day and not as much energy. dr said I am enemic. The days are hard the nites are long. So far no luck with findinng a surg. but i am being monitred and pn heavy pain managemnt. OU is considering me as a case study, but from what they siad today, it dont look like they will. maybe I will know sooon. dr said to get things in order just in case soo I have bene making some final arrangments so Art will njot have to. We have Ziggi, Dayja and Shooter for sale to start. Break my heart, but theyw ill have to be sold. Mom, Art and my son ( he is here with me) is takin this very bad. Art told him mom tonight. I am holding on to the last hope that some ome wil help. Dr said she hopes very sooon. they are dicusing going in and take the ovary and the vein atached to it if it is posible. Reo I come to se you today, you did not answer, left you a note on your front door..Cmhr is comin g to get Tina tomorrow,






and Jasmine leaves the 12th. It will be 2 sad days for me. I know it is the best thing to do, but I feel like I have failed Tina. She has come along way, and she is redy for the next step. If I do come thru this, we will hav more cmhr here. Sorry for the typ o's, ( paion med) I am not going to deny it, I am scard, for Art, my son, mom and myself. Art is a basket case, he checs me all nite to make sur i am alive, son is under me all the time, mom crys and sinc my dad passed I ave been the one taking care of her.

You would think that a barn is a lonly place at 2,3,4 in the am. But Some how i find peace with my babiys and i am not cold when i am wih them.THey make me smile and cry at the same time. Dreamer lets me hug her and cri on her and is never scard. Sh eis a gentle soul.

Thank you to everyon for their support, love and prayers, if I dont get a chance to come back afgainn...I will not give up..I told my dad that i am not ready to com to him yet and i belive he heard me...I will be in touch wi9th reo marty and a few otheres, they will keeep you updated if i cant. I wil be glad when this yr is ovr.... Theresa


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## Marty (Dec 5, 2008)

Teresa, do I have to come over there? There is NO way you have failed Tina. Tina was a basket case who knew nothing when you got her. Scared, hurt, abused........ You have trained her beautifully and taught her to trust. You can touch her now and groom her, clip her and lead her. My gosh that was a feat!!!!!!!Do not ever think you have failed this horse. You are the one who has saved her life and gave her a wonderful home. As you said, she is now ready to go to the next level and she could have never been able to take that step without you. She is going to be a magnificent pony for someone, BECAUSE OF YOUR LOVE AND DEVOTION.

WE LOVE YOU TERESA!!!!!!!!!!!


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## Brandi* (Dec 6, 2008)

ray



ray


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## Minimor (Dec 6, 2008)

I haven't been to this thread in a few days, and I never imagined things would get so much worse so quickly. My prayers go out for you Teresa. I have never heard of anything like this condition that you have. I pray that they will find a surgeon that can help you.


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## rockin r (Dec 6, 2008)

OMG!!! I have got to stay off of here when I am medicated!!!!



I am sorry for probably scaring everyone half to death



Please forgive me..This disease has progessed to this point. But, it has been at this point for quite some time,(we just did not know it) it is just now starting to rupture. Today is a good day! I feel good, so far no bleeding...Kelly is not going to pick up Tina today, they are doing it next Sunday, so that is better for me, to say good bye to her...Kelly will do wonders with her...IT IS the best thing for Tina, and I know it is Marty, (PLEASE do come here!) I guess I was feeling sorry for myself, again I am sorry, just that we are selling 3 of our own and then for Tina to go too. We are not giving up, I got Art to go to work today, Donnie is here with me. Thank you for your continued prayers and support. As long as I am able to, I will keep you updated, if not someone will,,,,Theresa


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## MiniforFaith (Dec 6, 2008)

Teresa, prayers are coming your way from Pa. I know the power of prayer is stong on here, so everyone, let's see what we can do..Teresa needs us all praying for her. Sorry, I haven't been "on" much, just reading sometimes.. We are all here for you.. Have your Drs. checked over in this part of the country.. I know that there are a lot of speciality Drs. in Pittsburgh, PA.. ANd also at the Cleveland Clinic?? I have been to both places and they are wonderful..Just trying to think for you.. You are in my thoughts and prayers..






Jodie


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## REO (Dec 6, 2008)

Theresa left here a little while ago. We've been real life friends for years and years and she's always had a nice figure, but now she's a rack of bones that's so weak she can't hardly stand up straight.

She's not walking very well either. I've been having a very hard time (as you can imagine) knowing how she is and there's nothing I can do. But to see her like that...........

All weak and her bleeding from her nose. OH GOD PLEASE DON'T TAKE HER FROM US!

I offered to help them in any way I can and hugged her a few times, but I feel so helpless. All I could do was cry. I've been crying for days.

Please pray for her. And for Art, her mom and her son to get through this.

Very few people in this world are friends who love you as you are and don't judge or ask for anything in return. Theresa is one of those special people. I LOVE HER.


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## bcody (Dec 6, 2008)

Theresa, you know you are in my prayers, and if there is anything I can do, I will. Hugs and prayers for you and your family.


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## cretahillsgal (Dec 7, 2008)

Theresa,

REO pointed me to this thread and I feel awful for just now seeing this! I am praying for you. I am sorry that I don't have any info about this condition but I will be praying for it to improve.


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## dreaminmini (Dec 7, 2008)

This is my first time reading this thread. I am so sorry this is happening to you Theresa! I wish I had some answers for you. My prayers are with you right now and I hope you get some good news real soon. From everything I have read you are an awesome mom to your fur kids (and real) and a wonderful person. I have every hope and confidence they will get this fixed up for you.


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## Barbie (Dec 7, 2008)

Theresa-

I have tears reading your updates - please, please, don't give up. Stay strong. You, Art and all of your family and friends have my prayers. I hope you come up with a surgeon soon - hard to believe there is no one who can do this.

Dawn and I are praying for you - if you feel up to it at some time, give me a call. Take comfort in your sweet Dreamer - I'm sure she is glad to be there for you as you were there for her.

Take care.

Barbie (((((hugs)))))


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## Connie P (Dec 7, 2008)

Theresa,

you know how much I love you kiddo and I am praying really really hard for you - almost every minute of the day. You are such a special person and I would have never had the opportunity to get to know you at all without Dreamers accident. Once again, the love of horses brings people together.

Have you tried Loma Linda in CA? Please have someone call there - that is a wonderful hospital and there might be someone that can help you.

HUGS HUGS AND MORE HUGS TO YOU!

You cannot go anywhere my friend. You have so many people and critters that love and care about you. You MUST fight to get well. We are all rooting for you my dear friend!


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## kaykay (Dec 8, 2008)

Sending prayers to you!! Im so sorry you are going through this. Please stay strong. You are in my thoughts every day


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## Brandi* (Dec 9, 2008)

Just checking in to see how your doing today Theresa. I sure hope you can get some answers. Hang in there


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## cretahillsgal (Dec 9, 2008)

Hope you are doing okay! We are thinking about you.

<<Hugs>>


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## Charley (Dec 9, 2008)

Keeping you in my thoughts and prayers. Hope you are feeling stronger today.


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## HGFarm (Dec 11, 2008)

Hoping and praying that someone can help and SOON!!! Had not been on in a few days either.... dont you worry about writing whether you are on meds or not! It's all OK!! My thoughts are with you and your family!!


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## bcody (Dec 13, 2008)

Hi Theressa, was just thinking about you and wondering how things were going. I hope you are doing well. I am still keeping you in my prayers.


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## Sassy'sMom (Dec 13, 2008)

Theresa - I have been thinking of you a lot lately. I have been praying for you as well. I hope that all is well with you and that you are feeling better. I will keep you in my thoughts and prayers.


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## Fred (Dec 14, 2008)

Just read this Theresa and we are here praying for you! Linda


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## Barbie (Dec 14, 2008)

Teresa-

Thinking about you - hope things are looking up by now. Prayers coming your way.

Barbie


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## rockin r (Dec 15, 2008)

Been a while since I have been on line. Seems like I sleep alot. Kelly picked up Tina yesterday, we were very sad to see her go, of course I cried. I was very proud of Tina. She was hesitant at first to get into the trailer, but then she jumped right in. I gave her hugs and told her to show Kelly how much she has learned, kissed her and said good bye...






It was very cold out, so Art made me go back in the house as they drove away...Kelly will take very good care of her and get her where she needs to be to go to her forever home. She is a very nice lady, she and her mother were freezing, but they let me have all the time I needed with Tina before they left. I was embarrassed for anyone to see me, as Art had to help me across the pasture to get her. As for me, there is possibly hope at the end of the tunnel. OU Medical Center has put me on their Critical Care list. They are trying to get me an appointment the 1st week of January. I am afraid to get my hopes up, have toooo many times only to be told they can't do the surgery or help me. "When" this ruptures they will take me. They said when the bleeding won't stop get in the car and start to drive to them (1 1/2 hours away), and to call them and an ambulance will meet us on the Interstate and take me from there. I bleed everyday several times but it does eventually stop. Surgeon said to be within an hours drive from the hospital, but it is 1 1/2 hours away??? I have lost alot of weight, Dr.s said that is normal with this disease. I am down to 112 lbs. Dr.s have me on supplements, weight gainers and high carb diet to put weight back on or at least stabilize it. I went to see REO and I felt so bad for her. All she did was cry and hug me, I guess I frightened her. Now I stay at home, not because of REO, but because this is where I feel safe and it made me think that I don't want to put anyone in a frightfull position when it does rupture. If something happens at least I will be "home". I work when I can, not very often. And they do let me work from home if it is possible. Art has "decided" he is not going to sell any of our horses. He feels they keep me going. IF need be, he will sell them later. Art took me to dinner and Christmas shopping this past Saturday evening, shopping was cut short, I started to bleed and he paniced so home we went. Thank you to all who have emailed or called. For those who have called (Art does tell me that you have called) please try to understand that I am not being rude, I am just not ready to "talk" about it yet. I am still trying to deal with this myself and keep Art and my son sane. Everyone who has sent me Dr.'s names and hospitals, please know that we have followed up on each and everyone of them!!!!! And we have been told "we are so sorry", or we have not heard back from them. Again, Thank You for all your support and prayers. Theresa & Art






..........Barbie, Trust me, I do take comfort "with" Dreamer, I swear that mare is 3/4 human.

I wanted to add... Thank You to everyone who has sent Christmas Cards. They mean alot to us!


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## REO (Dec 16, 2008)

Yeah and I'm crying now too.

Seeing you like that did scare me so much. But not hearing from you since, has scared me more! I'm not one to intrude so I've been waiting to hear from you. You know I'm here if you need me for ANYthing. Just holler (or give a hint) and we'll be there!

So hon, if you're up to it, drop me a "word" email once in a while. It scared me when you didn't answer mine. But I know I told you to stay still. Please get rest.

I've been sending you healing prayers every day and I will keep sending them.

Hugs to you and Art!

Love ya T!


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## Barbie (Dec 16, 2008)

Teresa-

Think about you many times every day and pray that you will find the right place to take care of you. I'm glad that there is a light at the end of the tunnel.

If you feel up to it one of these days, give me a call - in the mean time you're in my thoughts and prayers (Art is too as I know this is hard for him).

Barbie


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## bcody (Dec 16, 2008)

Theressa, It is nice to hear from you. I hope that OU medical comes through. I m so sorry you are going through this. Know you are in my prayers dailly, and I think of you often.


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## HGFarm (Dec 16, 2008)

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!


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## rockin r (Dec 16, 2008)

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.


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## Reijel's Mom (Dec 16, 2008)

Prayers coming that you get in there MUCH sooner, and not based on any emergencies!


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## shadowsmystictopaz (Dec 16, 2008)

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.


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## shadowsmystictopaz (Dec 16, 2008)

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.


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## shadowsmystictopaz (Dec 16, 2008)

http://www.birthmark.org/hemangiomas.php there i just found that it should help.


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## bcody (Dec 17, 2008)

Oh Theressa, what good news!! I am optomistic that this is going to work! You and your family will be in my prayers. This is the season for miracles.


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## rockin r (Dec 17, 2008)

shadowsmystictopaz said:


> 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


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## Mercysmom (Dec 17, 2008)

Prayers sent your way, Theresa - I hope that you find answers to this condition and I am glad Art is keeping the horses as they will be good healers for you.





ray



ray





Denise


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## Fred (Dec 17, 2008)

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


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## HGFarm (Dec 17, 2008)

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!!!!


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## bcody (Dec 20, 2008)

Hi Theresa, Just wanted to let you know I am thinking of you. I hope you are oing OK!


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## nootka (Dec 20, 2008)

Best wishes for a swift recovery, Theresa!

Liz


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## Equuisize (Dec 20, 2008)

That sounds optimistic Theresa.

Keep the Christmas spirit alive in your heart.

I am keeping you in my prayers and thoughts.


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## Barbie (Dec 20, 2008)

Prayers continuing for you Teresa. The power of prayers and good thoughts from this forum truly is amazing. Hang tough and think positive. OU is there for you.

Barbie ((((Hugs))))


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## bcody (Dec 22, 2008)

Hey Theresa, I was just wondering how you were doing! I hope you are OK and hanging in there. I also hope you get in for an appointment sooner with OU. Prayers are still coming or you and your family.


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## Connie P (Dec 22, 2008)

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.


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