Linda Dixon Hi Anne, thought maybe it was you. Yes, Dr. Gillinov's nurse told me the same thing about the transc ... Read more

Linda Dixon Hi Anne, thought maybe it was you. Yes, Dr. Gillinov's nurse told me the same thing about the transcather approach being perfected by that time. I am by nature something of "well it would be my luck" thinker. I think "well it would be my luck" to end up with Afib and have to take the coumadin anyway. But I understand the stroke risk is a little higher with the mechanical even with the coumadin therapy. And, after all I am 63 years young and I hear the tissue valves last longer in us older folks too.

I think I will be alright once I actually get to talk with Dr. Gillinov and I do keep telling myself that I am going to a great deal of inconvenience and expense going to CCF to Dr. G and am I going to get up there and argue with THE expert??? More than anything I'm a little concerned that he might not want to repair the dilated aorta, which is only 4.0cm. There seems to be a little confusion regarding exactly where the dilation is located. I think it is just a matter of the terms one physician uses vs another, sometimes they say the root, sometimes they say the ascending aorta. I really want it fixed, wherever it is, there is a very strong genetic predisposition to aneurysms in my family and I just want it fixed! I don't want to have to go through life having CT's done every year to finally hear "it's time to fix the aneurysm". Fix it now!

Glad you are doing well. I do have one question. I apparently will be in Cleveland for at least 10 nights. I have to be there on Friday March 9th for testing, Monday March 12th to meeting Dr. G and whatever else you do on day 2 and then surgery on Tuesday March 13th. If everything goes perfectly and I am suddenly superwoman, I'm thinking average of 5 nights in hospital following surgery. My daughter will be the only one with me and she will most likely be with me most of the time once I am out of ICU. I am going back and forth trying to decide where to get her a room. I love the idea that if she is in the Intercontinental she doesn't even have to go outside to go back and forth. But the cost is way more than the guesthouse which is just across the street. It will be almost $200 per night whereas the guesthouse is half that. So a little math puts it at at least $2000 for a room that she won't be in very much. However, I have read very good reviews on the guesthouse and terrible reviews on the guesthouse and I know everyone's idea of what terrible is. Where did your family stay when you were there and did you consider the guesthouse. I'm not rich and I still don't know how much the surgery will end up costing, although from what I gather from you and others, it seems CCF pretty much accepts what insurance pays. I'm not the sort that needs luxury and neither is my daughter, but I don't want something sub-standard either. Any help will be greatly appreciated. I feel like I need to go ahead and make reservations pretty soon.

Now, you think I can find something else to worry about????? ( oh, I know....the plane crashing!!!)

Still waiting...Linda

Linda Dixon Hi Janies, thanks for the "visit". I read that you got to drive today! That's awesome, I have been t ... Read more

Linda Dixon Hi Janies, thanks for the "visit". I read that you got to drive today! That's awesome, I have been thinking it would be 6 weeks, hope it's only 4 for me as well. I hate being "couped" up all the time, very depressing. Hate that you are having such a time with the coumadin and your INR level. I am assuming you were told foods to avoid etc? My experience with coumadin and diet, was just nothing in excess out of the ordinary. In other words, I did not stop eating salads, I love salads, I just made sure I didn't have anything with added vitamin K. For instance, I could not eat the yummy chocolately calcium chews because they also contained vitamin K. (don't ask me why), vitamin D I can understand...but anyway you will eventually get it straightened out. I actually experimented with the dosage myself (I'm not advising you do that) and I found what worked for me and then told the doc that was how I was taking it. It is a pain, however, if you have to come off for any reason. I had a colonoscopy and had to be off for 5 days and then it was a little trial and error getting back on track but once I did, the dosage was the same as before I came off.
I was taking it for a small PFO that I have, nobody is addressing that anymore since the stenosis and dilation came about, soooo I don't know what Dr. Gillinov will say about that. I guess my biggest stressor right now is thinking about "what kind of valve" and whether or not he will repair the aorta. I know he leans toward tissue valves, but I am sort of leaning toward the mechanical, I don't won't surgery again if I can help it. And I want the aorta repaired/replaced and not have to worry about that in the future. But like I said before, I guess it would be stupid for me to go to all the inconvenience and expense of going to CCF and then get up there and argue with the doctor. So I am trying to develope an attitude of acceptance for whatever he thinks best.

Thanks for the post, be careful driving around and Vrrrroooooommmmmm!

Still waiting....Linda

Linda Dixon Hi Nancy, thanks for your visit to my guestbook. Yes, I am trying to stay busy, worked all day yeste ... Read more

Linda Dixon Hi Nancy, thanks for your visit to my guestbook. Yes, I am trying to stay busy, worked all day yesterday at church for a fundraiser, actually Tuesday as well, so I think even my hair hurts today!

Yes, I am going to Cleveland Clinic. I also struggled with either going there, which I believe is the absolute best or going somewhere closer to home, that would be more convenient for my family and maybe easier for me afterwards considering flying, etc. But after much prayer, thought and discussions with my daughter (she will be the one to go with me) WE decided to go with CCF. They accept my insurance whereas some of the centers a little closer to home (SC) don't.

Sorry...but no....for me the days are not flying by, they are crawling at a snail's pace. I have known since November 22nd that my stenosis is at the critical stage and it was time to get fixed. When I went for my cath, they could not cross the valve, it was so narrow. Unfortunately, or fortunately, depending on how you look at it, since I do not have any major symptoms it wasn't considered urgent and Dr. Gillinov's first opening is March 13th. So....wait I must! I keep telling Mitch it isn't fair, I've been here longer than either one of you and you get to go first!!!!

I'm counting on both of you to be totally honest, don't sugar coat, and let me know how it really is. I know we're all different, but I am a survivor and usually take things pretty well, so I don't think I will be a cry baby. I saw what a positive attitude can accomplish with my husband. He lived 11 years with prostate cancer which had mets to the bones for the last 9 years. He was only supposed to make it about 5 years, but he had such a great attitude and was such an inspiration. So I figure...I have to do this like he would have.

I keep hoping the CCF will call and tell me they have a cancellation and I can come sooner, but so far no such luck. But I can be ready really fast! So for now....still waiting.

Great to "chat", I just might give you a call. What time zone is St. Louis in?

Take care and count those days down girl! - Linda