Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 > > Subject: Marfan's-update on cousin ; You might ask on the Marfan list: http://www.marfan-list.org/ They have a really good information package that they send out by snail mail. I think they have a toll free number at their site too. AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 I wrote a while back on my cousin's wife's hospitalization from severe chest pain. She is in her 40's and has Marfan's. My parents saw her and found out a little more of what is going on. Apparently the walls of the aorta are quote: " separated from the top (breast bone area) to the groin " . She is going to need surgery. There are only two hospitals in the country that do it. One in the East and one in Texas. I know Sue Ginley wrote to me on dissecting aneurysms, but now I can't locate it. My parents are wanting some more information on this. My cousin's wife has only one sister left living, so our family is her main support system. Until her surgery she can't do anything around the house.-absolutely no lifting, etc. Mainly personal care and that's about it. Does anyone have any info or web sites, that I could go to for info? My parents and aunt are very concerned and would like to know what's in store for her, success rate of these surgeries, etc. thanks in advance for any information. H. HEDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 , I am so sorry to hear that this situation has escalated. I am sure you are all terrified. An aortic aneurysm is the dilatation (widening or bulge) of a portion of the aorta, usually at a weak spot in the aortic wall. The aorta is the largest artery in the body. It carries all the blood that is pumped out of the heart and distributes it, via its many branches, to all the organs of the body. The aorta projects upwards from the heart in the chest and then arches downwards, travelling through the chest (the thoracic aorta) and into the abdomen (the abdominal aorta). The normal diameter of the abdominal aorta is about one inch. Dissecting aortic aneurysms are classified according to anatomical location: Type A involves the ascending aorta; Type B originates in the descending aorta. Acute aortic dissection is often fatal within one month of onset. Surgical treatment may be delayed in aneurysms involving the descending aorta until the blood pressure has been controlled and edema and friability of the aorta are diminished. The usual course of treatment for an aneurysm of the ascending aorta is immediate surgery. The surgical procedure for either type is aimed at either repairing the intimal tear or removing the affected portion of the aorta. This may be done by suturing the separated aortic layers back together or by removing the damaged section of the aorta and replacing it with a synthetic graft. If the operation is successful and the patient survives the first few weeks after the operation then the outlook is quite good so long as the blood pressure is carefully monitored and controlled. Marfan's is a factor in this mix which weakens the structure of the blood vessels however, it is a grave situation indeed. Please let me know how she is doing and how you are. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 , Is the Tx Hospital St Luke's??? We have one of the best cardiac centers int he world there. My neighbor across the street is a cardiologist at St Luke's too boot. ===== Love, C " Cass' Momma " HEDS Houston, TX USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi , Well, Jill said it pretty well. I will continue praying for her and for a full recovery as it sounds if she is in the right hands, and a graft takes well, she will be all right. Please let her know we are praying for her on our list as well. Love, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Jill, Thank you for the information. I'm glad I waited to call her. Dad mentioned that she was on blood pressure medication also,(she's been on one-a beta blocker) and has to be extremely careful. Now I understand the implications of what is going on. My parents went down to see her, and how she was doing, and they both are understandably really anxious about what is going on. With this info, I now know more how to be of support. It's not going to be easy, knowing they have an 8 year old daughter with Marfan's too. All of this has been so hush-hush over the years. One, the family didn't want to accept the fact I have EDS, much less the fact that my cousin's wife has Marfan's. That's why there has been the secrets on any info. I did have a really nice visit with her last summer-lots of EDS/Marfan's talk, and mom said she's looking forward to talking to me. To be honest, I've held off, not knowing what would be said and having so little to prepare myself emotionally to handle it. It's a poor reason to not call some one that needs to talk more now that at anytime, especially to some one that understand what it's like to have a collagen disorder and is a family member. Thanks again for the support, and the information. Subject: Re: Marfan's-update on cousin > I am so sorry to hear that this situation has escalated. I am sure you areall terrified. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 , Dad didn't say which hospital, but that it was one of the two best cardiac hospitals. I'll let you know what I find out, after I call her. ~~ From: " C. " Subject: Re: Marfan's-update on cousin > Is the Tx Hospital St Luke's??? We have one of the > best cardiac centers int he world there. My neighbor > across the street is a cardiologist at St Luke's too > boot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 , Now more than ever your cousin needs your support and understanding, even if it is just a listening ear. You will not know all the right things to say, but don't let that stop you from calling and just talking. I can't tell you how many of my old friends don't talk to me anylonger, and I know it is because of all the lifethreatening things I have gone through. It hurts to think they can't put their own feelings and fears aside to be a friend. To be very honest I consider all my new EDS friends to be my closest friends now. They are truly the only ones who can understand what I am going through, who I can joke about morbid things, and not have them think I am weird. So go ahead and call her, she needs you now more than ever. Love, Sue Ginley Quote Link to comment Share on other sites More sharing options...
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