Hello I am new and scared

[Ginas]

Hello,

I found this site while researching my condition. I have know for several years that I had a heart murmur. I broke my ankle last Sept. 2010 and when I was in the emergency room they did an EKG, they were concerned and that was all I really knew. The next morning they were telling me they had to be careful about how they put me to sleep because of my heart. I was on meds so not much of what they said made since. No one really said any thing more about it other than I needed to follow up with a heart doctor when I was through recovering from ankle surgery and walking better. I was in a wheel chair for 3 months so recovery was slow. I have been walking better now so I made an appointment with a cardiologist. Well that was on the 1st of June and it has been a world wind 22 days. I have had a heart cath and they have determined that the aortic valve does need to be replaced but there is no blockage. I was told it was serious but not critical (what does that mean any way).

I have quite a few bad teeth so they say I have to get those fixed before I can talk surgery. I am in the Houston Texas area so I know the Hospital's here are very good. I have meet with Dr. David Ott here at ST. Lukes and I like him. When I researched him he seems to have a very high rating for this surgery. He said he has done over 20 thousand with a 98% success rate which I must say sounds very good. Doesn't really make me any less scared since they say you don't really have many symptoms with this. I have so many questions. How do I decide what kind of valve (mechanical/tissue)? And what if it doesn't last while I get my teeth fixed. I mean seriously how can you really know. What about the meds you have to take if you get the mechanical, I am 54 and my cardiologist said mechanical last longer but I have read horrible tales of the meds you have to be on for the rest of your life.

Really I guess I could use any input from people who have been through this. Right now I am afraid to even go to sleep at night for fear I won't wake up. I realize I may sound dramatic but I really don't have anyone to talk to about this. Any help would be appreciated.

 

[Julieaka]

GREAT first step - I appreciate you admitting to the "afraid to go to sleep at night" because it's very real - and you may lie there and listen to your heart wondering what it is doing! Totally normal - well for some of us! You will catch a few people posting they don't have these fears but for those of us who do they are very very real. In fact, don't be surprised and ASK for anti-anxiety drugs in the hospital of you need them. Could not get my heart rate down but then it came RIGHT down when they too my fear away

Totally normal to be overwhelmed keep researching - ask for 2nd and 3rd opinions, but when a doctor tells you it's "time" it probably really is and I totally agree with getting any of your other medical issues fixed first. You want to do this surgery and then "chill" for a year!

on the "scary meds" ... read more on this forum and on other websites - you do have to be on them "forever" with your valve but don't turn down this option without reading more about it - you may find the daily meds easier than another surgery!

lots of love to you - keep facing your fears! it's okay!

 

[normofthenorth]

"What Julie said!" You've come to the right place. And DO get your teeth fixed ASAP. My heart surgeon told me not to see a dentist for 6 months ofter my "valve job", so I'm very glad I got everything dental fixed first. (There's several other good and important reasons, too.)

 

[Natina13]

Hun......dim the lights, put on soft relaxing music ( on low), sit down in a comfortable chair, take a deep breath, close your eyes........and let serenity enter your being.....you are no longer alone, we are all here with you and for you. We were all afraid too, it is NORMAL, to be frightened, when faced with your own mortality......this is not an easy diagnosis to have suddenly dropped on your door-step. Your now part of our "Family"... and trust me, from all I have read here, these people are very knowledgeable, caring, kind and able to understand, like no one else can.....not even your Doctor.
I would suggest you get 3 notebooks, as I did. In #1 ..start writing down all your "Must do now" things, so you can get your ducks in a row. Your dental care should be your first priority, and be sure and let your dentist be aware, your having this done before a heart surgery. He may want to discuss with your Cardiologist, which antibiotics he recommends, prior to any dental work. Your dental work is very important, as you will not be able to have dental work for at least 3 months ( per my Surgeon), post surgery and anything like a abscessed tooth, could cause you to have problems with your heart. If bacteria enter the blood stream through a wound it can cause blood poisoning (septicemia), or heart-valve infection (endocarditis). Section off an area where you can keep track of appointment dates/times, important phone numbers, addresses of your doctors, ......it is very easy to become forgetful at this time, under the pressure your feeling. You may want to ask your Cardiologist........what time-line he has in mind, for your surgery date. My Surgeon told me, he would feel safe waiting 6 months, but felt waiting a year, would be too risky. They have my picture in the dictionary, under the word : Procrastination. I always felt, why do today, what I can put off doing till tomorrow. Well..........I made myself get very organized, making sure everything I could possibly think of, was done, before my surgery... used 5 of the 6 months he gave me. Also spent quality time with my children/grandchildren and other people in my life, I love.
You will need to have another notebook (#2), to keep a record of questions you want to ask your Doctors and the answers given. Keep a current list of all medications you take, even over the counter or vitamins . Any allergies you have and a summary of your health history. I made an area in mine, for "my online research" as well. Always take this with you to appointments. Remember, you are your best advocate.......you have a right to know and understand, everything about your body, procedures, surgeries.....if you do not understand the first time, make him explain it, in a different way.........you will need to be assertive, but pleasant
My 3rd notebook, I wrote things to make me relax/happy/positive...like a diary of my everyday life. Mostly tried to find positive things... some days, it was something simple, like I saw a rainbow and how beautiful, I thought it was.. it is amazing, how simple little things give me such joy.......things I think I had been too busy to notice, I am a much happier person now, noticing the hues of a sunset or noticing how my 1 y/o grandson, Tristan's smile, seems to light up the whole world. I also wrote letters to each of my children and kept them in this notebook .
Sending caring positive thoughts your way............remember...."You are not alone" Huge hugs !!!!
Renee
Go Team 2011 !!!!
DX BAV w/severe stenosis ..3 proximal arteries 75%+ occluded 11/2010 Surgery 4/14/2011 AVR Edwards "Magna" Bovine Tissue Valve and a Triple Bypass...no complications...Life is good !

 

[ken taylor]

Do not be scared! look forward to getting this behind you. I just had my surgery at St. Lukes one month ago. Now I walk up to four miles at a time. Dr. ott is a good surgeon, I chose Dr. Gregoric . They are two of the best in the world. I think you are in GREAT hands. I chose a mec. Valve and Im 62 years old and very active. One year ago I was walking 12 miles every day and as far as the meds I do not understand why folks wory about them. No big deal. And even with a tissue valve there is no guarentee you will not have to take them . But with tissue you will have to have a re-op, and in my research they say they last up to 15 years, I could be wrong but I think it is closer to 8 to 10 years. Look forward to getting this behind you and living a long life. Check out ONX valve I do not know if dr. Ott does that valve But Dr. Gregoric does many. HES GREAT!!!!!!!!!!!!

 

[Ginas]

Thank you all for your input. Keep it coming. Ken how was things at St. Luke's. I am thinking this will be done within 3 to 6 months. It means so much to talk to someone who understands

 

[LeakyUK]

I am on the meds & have been tested twice a week for the last 3 weeks. The last 3 tests were all in range so I am now on weekly testing. I hope to move to six weekly eventually. I do not like hospitals, weakness or pain so mechanical was a bit of a no brainer to hopefully avoid a re-op. The choice is regularly battled on here and you will need to do the research and weigh up the options based on your lifestyle & thoughts of a re-op. I think once is more than enough!.

 

[Cooker]

Glad you found us and welcome!

 

[nngbwh]

You did the right thing in seeing your doc. It's completely normal to feel scared. First thing you need to do is set-up an appointment with your dentist.
I choose a ST.Jude mechanical valve at age 46 because I did not want to go thru the surgery again. But this is not true. There is no guarantee.... Right now, I am taking Coumadin, it is no big deal ! This is a personal choice you and doctor need to decide.

If you read the forum, you'll find out there are tons of info about mechanical/tissue valve. Good luck and make sure you keep us all posted.

PS: Welcome aboard.........................

 

[ken taylor]

St.Lukes Is GREAT! This was my 2nd OHS there This time I knew what to expect, All went well. There is really not much pain. They put you to sleep and it seems like your out for 1 second. When you start to wake up do not freek out are fight the breathing tube, Try to lay still and not move it. If you fight it , like I did the first time you could have a terrible sore throat for weeks. This time I tryed not to do any thing to move it and it worked no sore throat at all. My back hurt a lot, I sit in the recliner for four days, on day threee they took the drain tubes out and then I could breath a lot easier . And by day four the sun comes out and you will start to feel much better! make yourself walk as soon as you can that will help more than anything. For me it has been a real spirital journey, There is a reason we have to go through this, trust your God he will hold your hand, and when you wake up be proud of yourself. Just remember we are here for you. You have become a member of a wonderful family!!!!!!!!!!

 

[AgilityDog]

Welcome aboard Dearie! I've been through this twice, and have two mechanical valves (I was too ill to do both at the same time).

Don't be too scared of the coumadin. In 5 years, I've curtailed activities exactly once because of my medication (INR way out of line, so I chose not to participate in an agility trial one day - because Jet can knock the Crap out of me some days). A couple times I've passed up having wine with dinner. And I've had a few doozie bruises, again from Jet, but more related to aspirin therapy than the coumadin.

You may want to consider getting an Rx for xanax or similar anti-anxiety meds: My DH says I was a bear before and after both surgeries, and half a pill on a bad day to get through the understandable anxiety is well worth considering.

 

[neil]

hi gina.....welcome aboard,its a tough choice choosing tissue or mech,but remember which ever you pick gonna save your life,i choose tissue because i didnt want to be on anti coags the rest of my life, having another re op down the line is the path ive chosen,am sure you will hear arguments for both sides, but remember this is your choice and what you are told on here is only peoples opinions,talk with your cardio and surgeon,i was terrified when i was told and for me the waiting was the worst bit about it all,i found the op itself not to bad at all as i think a lot of people will tell you the same,good luck and you will be fine

 

[Jkm7]

Hi Gina,
Happy you found us. It is very frightening to not have anyone with whom to speak about such serious conditions if you know they don't understand. Those of us here have 'walked the walk' and have felt the fear and the angst of choosing which valve.

I have two OHS in four years and my second was for valve replacement. I opted for tissue valve and am so happy with that choice. I did not want to risk a chance my valve could be one of the loudly ticking ones we read about. Body shape/size is not indicative of how loud a person's valve might be. My Mass General surgeon told me he has imlanted mechanical valves in tiny, petite little ladies and could hardly hear their valve but a big, barrell chested man might have a loud valve.

I also did not want a lifetime of coumadin. While I have read and learned much about it and know what a life saving drug it is, I worried about future medical/dental care which might involve bleeding. There seems to be a lot of misinformation about coumadin and ill trained medical professionals who have difficulty managing patients on ACT. The daily pill is not a big deal nor is the testing especially if home testing but I wanted to avoid it if possible. Totally personal choice and the only wrong choice is to not go forward and have the surgery no matter which valve you choose.

As you have questions, we here are happy to help in every way we can.
Welcome.

 

[Greg a]

Gina, a heart felt WELCOME to our OHS family glad you found us and as the Harry Nilsson/Three Dog Night song goes "one is the loneliest number"and the decision you face is a highly personal and lifestyle dictated decision. I would hazard a guess that we have as many mechanical valvers (Ithink Dick leads that pack with over43 years under his belt) as tissue (some are in the re-op state for multiples) my dad's lasted over 20 years before he passsed of unrelated causes. Mine is a Mitral valve repair with a dacron ring , there is a wealth of knowledge here for the future ..... read and ask questions


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

And yes look after the teeth ASAP as bacteria from the teeth has a clear path in to you to do serious damage ...no epideral layer to protect you

 

[Ginas]

I noticed different ones have meds listed and the kind of valve ext. listed under their names. When they did the blood work they said my cholesterol was high and put me on Lipitor and when I first went in I was taking Atenolol and they added Lisinopril. But that is all I am taking as of now. I know that when they told me the called it Aortic Senosis (sp) and said it had been there since birth and had finally gone bad. They talked about measurements something like .50 or 50 back in September but now it is .59 or 59 and I don't really know what that means, it is one of the questions I have on my list for this Tuesday when I meet with my Cardiologist. When I meet with him the dentist wants him to agree on what meds they can sedate me with then next Friday I have scheduled to have some teeth pulled. I don't want to wait on this I am reading what you guys are saying and I really want to get on with it. Sounds like I will see vast improvements in my life once it is done. Still a lot to do and understand. I took the suggestions from Natina13 and started the notebooks, I made one with the copies of the test that have been done so far, one for doctors appointments and meds list, and I started a journal. I didn't think about waking up with a breathing tube. Gosh I have so much to learn. Thank goodness I found you guys. I have wrote down some questions for the doctor just from what I have read so far. Thank you all

 

[Greg a]

Gina , one of the common side effects of Lipitor is cramping in the legs ....if you are one of us (those plagued by the side effect) try COq10 (Coenzyme Q 10) I am up to 250mg perday





.

 

[Ginas]

I haven't noticed any leg crapping but it is only 9 months since my ankle surgery and I still deal with that. By that I mean still difficult to walk on and still some pain from it but nothing that Advil doesn't fix. I think that is something I need to know some where I read you can't take Advil if you are on the blood thinners after surgery. I have some arthritis and take 800 mg of Advil at least 2 to 3 times a day. I wonder if that is bad for my heart right now. See another question to ask on Tuesday.

 

[Freddie]

To my understanding, advil will cause stomach bleeds. I use Tylenol Arthritis and save the Advil for my family.
Your right, another question for Tuesday maybe there's another med (prescription) that you can take.

 

[AgilityDog]

I think I remember seeing someone say the "trigger point" for doing Aortic valve replacement in patients with stenosis is .8-is. If you are at .6 ish, it is past time to have it done.

I dunno, I had "insufficiency" or "regurgitation" which is the same as prolapse. My valves didn't close well. With Stenosis, yours doesn't open as far as it should.