New to the site facing surgery soon

[Ozmercy]

Hi my name is Randy, I am 51, and I was recently diagnosed as having Bicuspid Aortic Valve defect, and an ascending aortic aneurysm 5.3cm. I also have mitral valve prolapse but I guess that goes with the territory and isn't a real big deal. I am seeing Dr. Siegel at Cedars and Dr. Trento is going to do my surgery. I see him on the 6th of July and then we will discuss surgery date and what he is going to do. I am doing okay with it, but hate the waiting! I am a little nervous about it I guess. I don't have a lot of symptoms, but I do get tired very easy and get short of breath with activity. Is this normal? I want to be in good shape when I go in but right now more than a walk seems out of the question. I am a firefighter and recently was put off work until I have surgery. It has been great to read this forum. It is encouraging to hear so many that have gone through similar things. Well I don't have a lot of questions now but will ask them as they come up. I have heard that UCLA and Cedars are the best hospitals in LA area for dealing witht this. Anybody else been at Cedars? Well thanks to all of you for being on this site even after you have gone through it. It is great to see all of the encouraging that is going on. God bless you all.
Randy

PS How do you add your picture?

 

[Der Biermeister]

Randy - some of these people are pretty good with their pictures and logos, eay?

Yes, SOB is the sine qua non of these valve problems. You will be amazed at how "fixed" you are after surgery - how quickly you get your breath back. As most will tell you, the total healing process can take even a year or more, but you can feel almost 100% in as little as 10 weeks. It's all up to you once the docs have done their magic. Do NOT sit around and wait for improvement. You have to make your own. And keeping a positive attitude, instead of "woe is me" is the biggest part of it all.
You'll hear me promote walking - a lot of it. It's no bs - it IS a key element in a good recovery.

 

[Ross]

Hi Randy and welcome to the club.

5.3! Your a walking time bomb. If I were you, I'd insist they get the ball rolling in a hurry. Not trying to scare you, but for as big as that is, it could dissect at anytime. Mine never made it to 5. I do not want to see another human being go through what I did, which is why I'm stressing how critical this is.

All your symptoms are right on cue. I would not do anything more then walk at this point. I'm afraid any stress or increase in blood pressure could well cause that thing to rupture.

Let us know when after you talk to the surgeon and read around. There are plenty of topics of interest and whatever you can't find, just ask.

 

[Karlynn]

Welcome Randy!

I don't know if you've looked at valve choice, but an FYI to check with your department, if you haven't already, to find out what your status would be with your surgery and the different valve types. Many fire departments don't let mechanical valve recipients to be "in the field" due to Coumadin. You may want to check out their policy on aneurysm repairs too. Not that it's something that is an option not to do (I agree with Ross - get in!), but just so you are informed about what will happen after surgery.

Best wishes.

 

[Ozmercy]

Thanks for the replies

Thanks for the replies

Ross,
I know it is a kinda scary number but it appears that I flew under the radar with this number for 2 years and it hasn't grown any more in that time. It is a long story, but fireman get annual physical check-ups that led me to a cat scan in 2004. The Dr. that reviewed the scan told me that I had a slight enlargement of the aorta and that I should see a cardiologist, but it isn't critical. He never used the term aneurysm (which I would have understood as a former paramedic) and I was concerned that I not get myself in a position of being forced to retire. The whole thing sounds stupid on my part but the doctor who read the scan really lulled me to sleep. It wasn't until I was supposed to have surgery on my shoulder that I was sent to a cardiologist to be checked out before having shoulder surgery. I am scheduled to see Dr Trento on the 6th. He is out of town or I would see him this week.

I am trying to walk the line between not allowing myself to become this scared person sitting at home watching tv all day and yet I don't want to be over-active. I have been walking in the morning (it is supposed to be over 100 today) but yeaterday I had to call my wife to come and get me because I was having trouble breathing. I have never done that before so it kind of scared me. I believe as soon as I see the Dr. I will get a date in July.

Karlynn,
I have talked valves a little with the cardiologist. He wants to go with a pig valve for that reason and some others. He said that within 3-4 years valve replacements will be done with a catheter! Isn't that amazing. By the time I need the valve replaced they should be able to do it by sticking a catheter in me. I have 20 yrs on as a firefighter and am thinking I may be done. This was not the plan but given this problem and some others I am having with lungs and shoulders I may be having a rather change of lifestyle. I am okay with all of this. I have a philosophy of go with the flow and do your best, pray that it is blessed and let God take care of the rest. I am trying to be a good patient and do my part in finding a good surgery team, but then there are things out of my control and I am trying to let those things go without stressing. i will address most of what do I do now after the surgery.

Thank you all for responding, this is such a wierd place to be. I don't feel that sick, but like Ross said I feel like a walking time bomb. By the way Ross I like your quote about dragons very funny.

Randy

 

[Phyllis]

Welcome Randy,
There are a number of others who have had their surgery at Cedars and I'm sure will join in here or you could private email them. I can't think of the members at the time, but if you put in a search for Cedars Hospital, you will come up with a lot of threads mentioning the hospital.
Best wishes to you and we look forward to helping in any way we can.

 

[Phyllis]

Randy,
Found a thread with a member who also had Dr. Trento:
http://valvereplacement.com/forums/showthread.php?t=15151&highlight=Trento+Cedars
You might want to private message this member.

 

[csutherland]

aneurysms

aneurysms

My husband, Jerry, had AVR in 2002 at age 65. He's a very active guy who has always worked fast & hard. After a few bumps he recovered well. In Jan '05 a routine echo found a 5.3 ascending aortic aneurysm that had never been mentioned before so we don't know how fast it came up; however, after numerous CTs since, the aortic specialist is saying he can wait 1 yr between scans. It hasn't grown at all since it was found. He's careful (well, pretty careful) about lifting and gets tired more easily than he used to, but he is 69 1/2 now. Three meds keep his BP at a reasonable level which is critical to keeping undue pressure off the aorta.

Just be careful. That 10 days or so until the appointment will go fast. Sounds as if you're on the right track as far as surgeon & hospital.

 

[bvdr]

Welcome to this site! We have other firefighters and former firefighters on this site so know that others here really understand some of the feelings you are experiencing right now. I'm with the school that thinks early intervention is the way to go. I would consider you to be more in the urgent category so I'm glad you are getting this addressed. Stay around and make yourself at home.

 

[temp69]

Trento is perfecto

Trento is perfecto

Randy:

I'm friends with a dr. at cedars and trento is the man! I'm personally going to Laks at UCLA, mainly because a cardiologist I saw there and many others recommended him. But Trento was also on my list and I don't think you can go wrong with him -- he'll work wonders with you.

Good luck, and hang out here once in awhile to calm your nerves.

temp69

 

[Superbob]

Randy: Best wishes to you and welcome to this distinguished club.

It's normal to be nervous about all this, in fact more than a "little," so feel free to vent and to ask questions.

When I was diagnosed, I was having only vague symptoms -- seemed a little more short of breath walking up the basement stairs than usual. But I was active -- still working out and going to work in a strenuous commute in the DC area. My magic number in the tests was also 5.3 but in the surgery they found it was 5.5. So I'll echo Ross -- better to go ahead and get it fixed and get on wuth your life.

Cheers...

 

[Adam T]

Hi Oz, and welcome. I like what Robhol said. Get it fixed and get on with your life. My surgery was almost three weeks ago, so I'm working on getting on with life right now.

I am surprised, as I think a lot of folks are, at just how good I'm starting to feel after only a couple of weeks. I can tell that the extra tiredness, the shortness of breath, etc are all gone. I think in a month or so I'll feel better than I have in years. That's a feeling I've read about over and over again in the last few weeks on this site. That was what I kept thinking about while I was waiting for my surgery.

I would encourage you to think about how good you're feel when you "get to the other side of the mountain."

Also, if Der Biermeister promotes walking, I promote listening to Der Biermeister. Seriously, I read a lot of his threads prior to my surgery and his questions and the answers he got were a lot of help to me as far as knowing what to expect.

Good luck, let us know how things are going.

Adam

 

[Mary]

Hi Randy.

If you haven't checked out the bicuspid aortic valve site, you might want to.
Here's the link: http://www.bicuspidfoundation.com
I had surgery for my BAV a year ago and I"m feeling pretty good. Sometimes there are extra issues that go hand in hand with a bicuspid aortic valve, so reading the information on the link might be helpful.
Please update us after your July appointment.
Mary

 

[lisa jeanne]

Best of luck!!

Best of luck!!

I wish you the best with your upcoming surgery. You sound very positive about it and that is key. I am going in on June 28 for mitral valve/ repair or replace. I am a bit anxious to get it done and over with!!! Please know you are not alone and summertime is a popular surgery time it seems!! Take care and we will get through this with this great board

 

[musician2k]

welcome

welcome

You made a good decision, already, by choosing to visit this site! Great info & great people on this board. It's not a substitute for medical advice from a pro, but it's great to get the insights from those who have gone before, or like me, who are also pre-surgery.

I also have BAV (diagnosed in childhood) and an ascending aneuryism of 4.5 (or 5.0, depending on which test you believe.) I am a teacher but have been off work since February of 2005, which has been good for me because it relieved my symptoms (SOB, attributed to 'asthma.' I may have 'asthma' but I'm 98% certain most of my SOB comes from the AVD.)

I was suffering from severe fatigue while working - achy all the time, SOB, tired, and worst of all recurring migraines that were debilitating to the point that I just could not work anymore. I'm very MUCH hoping getting "fixed" will relieve these symptoms. Most docs I've consulted with seem to have similiar beliefs.

Again best of luck to you. I'm going with a mech valve, my thought being that the "catheter" version of this surgery is still years away. You mentioned 3-4 years...that would be fantastic! Valve choice is of course very personal, and whatever you choose will probably be just the right thing for you. Best of luck!

Chris

 

[Ozmercy]

Wow this so great!

Wow this so great!

I can't tell you how much I appreciate all that I am reading here. It has helped me understand things that I was writing off as just me. I am one of those people who is phobic of being a hypochondriac, so I tend to ignore many symptoms and have tried to work through them. Now it seems that they are all making sense. Being a firefighter I have many aches and pains, and I have lung problems. Much of what has been going on I have written off as lung problems, but as it has gotten worse I think more and more of it makes sense that it is the BAV. I have been sick a lot the last 3-4 years. Anything that comes around I get it. Then it is hard to get rid of it without a lay down and take it easy kind of rest. I have had walking pneumonia 2 times in the last year and a half. I have struggled with migraine like headaches with the blurry eyed thing and what not. All of these things i was writing off as being 51! I seem to need to walk a thin line on the activity level. If I do too much then it takes less to get me tired. There seems to be a slower pace that if I keep to it, I feel much better and can actually do more but at a slower pace. Took a sleeping pill last night (elavil) slept 9 hrs and feel like I could take on the world today. I had a busy week last week and Fri. and Sat. I felt like going to bed all day, I definitly pushed it too far last week. Does this make sense. reading your comments makes me feel less psycho.

Thanks to all of you for the suggestions and encouragement. My thoughts are with temp 69 this morning. If I got it right he is in surgery as I write this. I will read up on the site that Mary mentioned re. Bicuspid valves.

 

[volsfan]

Randy,

My name is Robert and I'm 25, I just had OHS about 11 weeks ago. I like you had many of the same problems. I was getting so bad that I could bearly go up the stears at work to get to my desk. All the problems your have come with a BAV. How I made it through the long wait and my OHS? Give it all to God!!! Give it all to Him!!! After I did that a peace came over me and no matter what happened I was ready!!! Good luck with every thing you going through right now. My God Bless you as much as He has blessed me!!!

 

[catwoman]

Randy:

I'm surprised your cardio is leaning you toward a porcine valve instead of a bovine. Check intoo longevity stats here at this website on bovine vs. porcine.
If I were facing surgery all over again and did not want a mechanical valve (fat chance!), I'd be getting a bovine valve, based on what I've learned here.

Also, take anything that a cardiologist or surgeon says about future surgical techniques with a grain of salt. (Re: He said that within 3-4 years valve replacements will be done with a catheter!) Some replacements ARE already being done via catheterization but mostly on people who are not candidates for sternotomies. (There was a thread about this under New Developments forum in the last 2 months or so.)
When I had my surgery, my surgeon was trying to reassure me that a replacement for coumadin/warfarin was around the corner (just a couple of years away). That (Exanta) has been shot down by the FDA and the manufacturer (Astra-Zanaca).

Let me say this: Thank you for putting your life on the line in your profession to help many people. My niece is a former firefighter; her husband is a fire captain in the Dallas area; and his dad is a fire chief in Plano TX. Seeing what Kristi went through in fire academy, I am in awe of people like you! Bless you!!