I have had a bicuspid valve my whole life...

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Thanks for all the input so far guys.

I'm trying to change the way I eat right now - going from a diet that was rather high in sodium (I bet that contributed a great deal to what I have now), to a diet that has almost no sodium in it at all. I'll tell you that it isn't easy, or hasn't been so far. I've lost almost seven pounds in the past few days and I don't weigh much to begin with - 5 10 1/2 and 162 lbs normally, now around 155 - 158.

What do you all suggest to snack on ? I am trying to eat small meals over the course of the day rather than one big meal in the evenings like I was doing.
 
wait till you come out of surgery, the next day you will weigh a whole bunch more lol
I went in at 168 the next day weighed 192. I thought the pilbury doughboy had taken over my body! You want to make sure you don't leave any rings on your fingers that is for sure.
 
Wow - you gained 24 lbs? Incredible. Did your kidneys hurt? Mine get sore just by having the flu for four or five days, drinking all the fluids constantly. I hope most of that weight is water and fluids.
 
Your chest pain symptoms with ascending aortic aneurysm at 5.6 cm are most concerning. Reference this link below regarding timing of surgery, especially see the last page with emphasis on symptoms and rupture. I suggest you get an excellent surgeon who will take care of this ASAP, as risks of rupture or dissection are very high and greater than risks associated with surgery. Your diet will not save you from this.

http://72.14.203.104/search?q=cache...+valve+aneurysm+yale&hl=en&gl=us&ct=clnk&cd=9


All my best,
MrP
 
MrP, thanks for the wonderful article you posted! It is full of statistics and information that is easy to understand. I am thankful that I am reading this from "the other side of surgery". Excellent reading for anyone going through this ordeal.
 
Thanks for the article Mr. P. I have been very worried since I spoke with the surgeon last week after the results. I am meeting with the surgeon on tuesday and I want to push for surgery next week. Right now the squeezing in my neck has gone down a lot but I have some burning/sharper pain in the middle of my back, more on the right side. The doctor on call today said to not try and obsess about it and talk with Dr. Chen next week.
 
My wife gave me a back rub tonight and found that there was one small spot where all the pain was coming from. She rubbed at it for a while and put an icepack on it - I'll say this, it was incredible and my back felt very relaxed and the pain went away immediately.

I so love her. I have found that my view of the world has changed since I've been going through this - and god willing, it will make me a better person for the world.
 
I met with the surgeon, Doctor Chen today. He originally wanted me to have surgery in the next two to three months but after talking to him about the pain he said he'd like to do it in the next three or four weeks. He asked me when is the soonest I could have it and I told him now.

He wants to keep my bicuspid valve and try and repair it if needed, and replace the root and ascending aorta with a two part dacron graft. The only thing that I did not expect to hear was that he plans on keeping blood flowing to my head and heart through the whole procedure, but there will be a point where it will not be flowing in my lower body. This part is different from what I have heard from others.

He said it should take about six hours, I could be in the hospital between four and five days, and be out of work for two to three months. I asked him about aneurysms and he said the largest one he replaced on the ascending aorta was thirteen cm.

I'm anxious thinking about all of this but realize I need to have it done asap rather than putting it off. He said that he would be in the room for the whole procedure up until the part where the heart is reconnected, cleaned up and I am ready to be closed up. At that point he said residents or pa's would close me up. He said on average, he does about 130 of these procedures a year. Of all the procedures he does, 40% of the procedures are aorta related, 40% are valve related and the remaining are bypass and other types of surgeries.

How does all of this sound so far? I have a second opinion scheduled for next week on Tuesday.
 
brunoandbear said:
The only thing that I did not expect to hear was that he plans on keeping blood flowing to my head and heart through the whole procedure, but there will be a point where it will not be flowing in my lower body. This part is different from what I have heard from others.
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Click to expand...

This part is actually pretty normal when the aorta itself is being worked on. It is how they did things on me as well. I will also say that Dr.Chen is real good at answering any questions you ask, just email him and he will respond, in fact one time he just called me to answer what we had sent. So what did you think of him?
 
I thought he was very patient with us, especially considering the amount of questions we had. He was older than I thought he would be - I think he is in his mid forties or so. The first thing I noticed with him was when I shook his hand - it reminded me of my wife's grandfather's handshake, whom was a surgeon in Valparaiso, Indiana for many years. That made me feel better very quickly.

He knows what he is talking about, that is for sure. He must of spent 30 - 45 minutes with us, and even after all that time I still did not manage to ask all the questions I meant to ask him. I'm going to borrow your idea if you don't mind and try emailing him - as he seems like he is very busy and it will give him time to respond rather than calling his assistant. I am very comfortable after meeting with him, well, as much as I can be.

This is all still sinking in, it seems like I'm having a dream. Was it like this for you and every one else prior to their surgery?
 
I don't know of anyone who hasn't felt that way. It is a pretty big thing for anyone in their life. But I can tell you life goes on just fine after. It takes time to heal, don't try to make it go faster. For me, I was back driving in 6 weeks, back working at 8. But sleeping was the hardest thing, I ended up sleeping in a recliner for that first 8 weeks. It was just easier and less painful for me. It was 6 months before I started to feel really good, and a year before I felt like all was back to "normal". I went back to doing pretty much everything I did before except lifitng heavier stuff, they told me 50# max.
I know when I aksed my cardiologist why she told us Dr. Chen she was quick to say that there would be no one ever more prepared for a surgery than Dr. Chen and that people came from all over the world to see him because of his expertise in aortic surgery. The way she explained it made me quite comfortable with the choice, and after having been through it all I would not change a thing. Although I would be upset if Dr. Chen told you you were the best patient he ever had LMAO.
 
Hahaha. I am sure I am starting to drive him crazy with some of the questions but given the situation I think I am better asking than not.

He mentioned in an email last night that I need to decide whether I want a mechanical or tissue valve as a backup if they can not save my existing valve. I am leaning towards a tissue valve given my age but I am not sure yet.

The waiting is so frustrating, and while in pain, and more pain when active, it does not help. They want me to have a Trans-Esophageal Echo so I am going to try and do that as soon as they can get it scheduled.
 
Aneurysm factoids

Aneurysm factoids

First, I think all of us who had bicuspid aortic valves have had them our whole lives, though we may not have known it.:D

The rules of thumb around Maryland are that, with safer open-heart surgery, aortic aneurysms are now repaired at 5.5 CM, instead of waiting (and incurring more risks) until 6.0 CM.

A disecting aorta often feels like a really bad backache (between the shoulder blades), from descriptions of disections given by people I have known.

If an aneurysm disects and is repaired, the patient often needs to return for further aortic repair in future years. This is because, like a run in a lady's nylons, there is often a tube-shaped tear in the layers of the aortic walls that extends down the aorta and, due to time considerations during emergency aortic surgery, must be left behind for future repairs. I have known several people who have had their "full aorta" replaced in the years after the original emergency disection repair.

You are lucky to know what your situation is, so, if an emergency happens, time will be saved knowing the diagnosis already.

Best of luck!
Maryka
--------
BAV/Aortic Root replacement, Dec. 23, 2008, Johns Hopkins, Dr. Duke Cameron
 
At age 33 I would strongly look at a mechanical replacement if I was you. At my age 52 at the time I was in that gray area and chose the tissue, but if I had been younger I definitely would have opted for mechanical. But I hope your valve is repairable! My first surgery happened before replacement was even available and the repair they did on it worked for 47 years.
 
Just FYI for comparison, I had chest pain for 15 years before my surgery, but my chest pain was confined solely to my chest area. I had a lot of pain, but never had pain anywhere but in the chest area. I was diagnosed with mild aortic stenosis and BAV. Finally got the AVR but did not have aortic aneurysm so did not need any work on aorta. Also, I exercised a lot, and I exercised right through the pain, and I believe that a lot of the pain I had was caused by the exercise (or at least the exercise contributed to the pain).

I agree with what the others have said on here - get the aneurysm fixed ASAP. And make sure you get your BAV taken care of one way or the other while they're in there.

Good luck!
 
I am wondering why our Brunoandbear is not posting here anymore. I hope he is getting "fixed up" now!

I forgot to tell the List that the reason I know a lot of people with disections is that I used to be the local Marfan Syndrome support group leader and, in that capacity, met lots and lots of disection survivors.

This evening I was talking to my friend Carol, a disection survivor, about where she felt the pain from her disection and she concurred that a lot of the pain was in her back--betweeen her shoulder blades. But, I agree with others on this list that when you feel disection pain anywhere in your body, you should take it very seriously indeed!

Regards, Maryka (whose anneurysm was "controlled" for almost 20 years at 4.5 CM due to beta blockers and lack of lifting and aerobics--only to have it fixed 2 months ago when my BAV was replaced).
 
From what I read, the long prognosis for BAV repair is about the same as for a tissue valve, 10-15 years.

Good luck with your decision and best wishes for the surgery, hopefully soon.

BAVR with ON-X 27mm and asscending aorta Dacron Conduit Dec 19, 08 Cornell NYP
 
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