I'm trying to chill!! It is just the way my body has changed the last couple of weeks has me scared. I had the shortness of breath and felt lazy for the past year or so and had a hystrectomy in march 07, I had a hard time recovering, which now I think this was part of the reason why... They said I have had this forever and have had 2 children and the hystrectomy like I mentioned, but the last 2 weeks, I mean I am so tired and get wore out so easily and the weird feelings in the chest. Then when I found out Thursday what was wrong just shocked me so much. I know you are right in I need to slow down and quit tripping myself out... I am researching like you suggested Al and I sure appreciate all the information on the surgeons and all the other information you have provided.. Hopefully you will read a calmer me tomorrow.. THanks again!!!! You all are Great!!!!
Confused, impatient
- Thread starter CA Pigg
- Start date
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Douglas Riley
Carole, take solace from these posts and try to relax (not easy I know). If a repair isn't possible you will need a mechanical valve as they last so much longer. An organic valve would mean more surgery in 12/15 years time. The only down side is a lifelong dependancy on Warfarin but you get used to that! You WILL feel better for the surgery and once you get fit life will be even better. If you have any questions just post them on here and everyone will try to help you through it. Kind regards, Doug.
susiesknight
Active member
Ohs
Ohs
I live in Gulf Breeze, Florida and am having my surgery in March at UAB with Dr. McGiffin (does 600 heart surgeries a year). I am having minimally invasive aortic valve replacement with a pig valve plus a possible aorta repair,depending on what he sees when he does the surgery. Dr. McGiffiin gave me a choice of valves whereas the local doctor would not. I really like him and all the people I have dealt with at the Kirklin Clinic at UAB.
Ohs
I live in Gulf Breeze, Florida and am having my surgery in March at UAB with Dr. McGiffin (does 600 heart surgeries a year). I am having minimally invasive aortic valve replacement with a pig valve plus a possible aorta repair,depending on what he sees when he does the surgery. Dr. McGiffiin gave me a choice of valves whereas the local doctor would not. I really like him and all the people I have dealt with at the Kirklin Clinic at UAB.
noel
Well-known member
Also from Alabama
Also from Alabama
I am Noel's wife. And I think I might be losing my mind. lol I came in and posted earlier and now it seems to be no where to be found. Guess I did something wrong. Anyway, just wanted to add my two bits here...Noel had VR in November 2006 at UAB with Dr. Dr. McGiffin as the surgeon. He was fantastic. Noel had just undergone OHS 9 mos earlier that almost did him in. He had less complications with the VR that the first surgery and was walking 1 mile 10 days post-op. You are in a good place here...we got our first info from some members and then Al Capshaw recommended Dr. McGiffin. Noel's age and the fact he was on coumadin already (for life) made it pretty much a given that he would have the kind of valves he got. We wish you nothing but the kind of success that we have had.
By the way....I had friends in high-school with the same name as yours. Robbie
Also from Alabama
I am Noel's wife. And I think I might be losing my mind. lol I came in and posted earlier and now it seems to be no where to be found. Guess I did something wrong. Anyway, just wanted to add my two bits here...Noel had VR in November 2006 at UAB with Dr. Dr. McGiffin as the surgeon. He was fantastic. Noel had just undergone OHS 9 mos earlier that almost did him in. He had less complications with the VR that the first surgery and was walking 1 mile 10 days post-op. You are in a good place here...we got our first info from some members and then Al Capshaw recommended Dr. McGiffin. Noel's age and the fact he was on coumadin already (for life) made it pretty much a given that he would have the kind of valves he got. We wish you nothing but the kind of success that we have had.
By the way....I had friends in high-school with the same name as yours. Robbie
Nupur
Well-known member
Hi
Hi
Hi Carole.
Just wanted to chime in and say welcome. I was very confused and very impatient myself after my PCP called and said that I have "significant reurgitation" and then the cardio said "oh, just go home and don't freak out, i'll tell you when you need surgey, which, for sure you will some day". Not having clear answers and being in limbo until I saw another doctor and had a TEE was horrible. In those two weeks I had to go to the ER, I thought I was dying, and they sent me home with Ativan. Now, I am just saying this so you know you are not alone. But, your symptoms may be real if your valve is ready to be replaced/repaired soon. So, absolutely listen to your body.
Since I have been diagnosed and checked into this waiting room (that's what they call it here when you are waiting for surgey down the line), I feel absolutely awful. I am so aware of the symptoms, and have trouble figuring out if I am having a panic attack (of which I have many), and my fear of "sudden death" is debilitating in my everyday life : ) But, as Al said, you have time to get all the facts, choose a surgeon and get it fixed. So, don't panic! Easier said than done, of course. And don't hesitate to demand answers from doctors. It's your health after all.
This site is wonderful. My husband says I am addicted : ) We are all here for you as you go through this. All the best,
Nupur
Hi
Hi Carole.
Just wanted to chime in and say welcome. I was very confused and very impatient myself after my PCP called and said that I have "significant reurgitation" and then the cardio said "oh, just go home and don't freak out, i'll tell you when you need surgey, which, for sure you will some day". Not having clear answers and being in limbo until I saw another doctor and had a TEE was horrible. In those two weeks I had to go to the ER, I thought I was dying, and they sent me home with Ativan. Now, I am just saying this so you know you are not alone. But, your symptoms may be real if your valve is ready to be replaced/repaired soon. So, absolutely listen to your body.
Since I have been diagnosed and checked into this waiting room (that's what they call it here when you are waiting for surgey down the line), I feel absolutely awful. I am so aware of the symptoms, and have trouble figuring out if I am having a panic attack (of which I have many), and my fear of "sudden death" is debilitating in my everyday life : ) But, as Al said, you have time to get all the facts, choose a surgeon and get it fixed. So, don't panic! Easier said than done, of course. And don't hesitate to demand answers from doctors. It's your health after all.
This site is wonderful. My husband says I am addicted : ) We are all here for you as you go through this. All the best,
Nupur
THank you so much. You are so right in how it makes you feel. My mind feels better today because I think I've made the decision on what type valve and I know i want Dr. McGiffin so now just getting the referral and I will hopefully be on the way. I know I will feel better after I get to talk to the surgeon!!! Hopefully soon, I know be patient, but yep, easier said than done!! I'm not very patient, LOL!!! Thanks again for sharing. Very Awesome People here!!!!
ALCapshaw2
Well-known member
Carole -
You can probably get an appointment with Dr. McGiffin simply by calling his office at 205-934-2526, telling them you have Mitral Valve issues, and would like to consult with him about future surgery. He will want copies of all your Test Reports and Videos to review, preferably before your office visit.
It doesn't hurt to have your Cardio's blessing, but it isn't necessary once you have established that you have a Valve Condition that may need surgical attention.
'AL Capshaw'
You can probably get an appointment with Dr. McGiffin simply by calling his office at 205-934-2526, telling them you have Mitral Valve issues, and would like to consult with him about future surgery. He will want copies of all your Test Reports and Videos to review, preferably before your office visit.
It doesn't hurt to have your Cardio's blessing, but it isn't necessary once you have established that you have a Valve Condition that may need surgical attention.
'AL Capshaw'
The nurse at office didn't have the results in front of her so couldn't give me numbers just said she knew it was severe mitral regurgatation (sp.) But she is sending everytihing to McGiffin and is going to mail me copies of my results.....Thanks again, my mind feels so much better having the appointment. I know I will still have many questions for you all and it feels great knowing you are there!!!!
Hey Carole,
I've been keeping up with your threads. Glad to hear you have an appt. with the surgeon you wanted. That makes all the difference in the world. It took two cardio opinions before I would believe that my aortic valve needed replacement, but once I met with my surgeon, then I was "let's get this done" I had some much faith and trust in him. Good Luck to you. And remember, ask questions. I feel that the only stupid question is one that we are too hesitant to ask..
I've been keeping up with your threads. Glad to hear you have an appt. with the surgeon you wanted. That makes all the difference in the world. It took two cardio opinions before I would believe that my aortic valve needed replacement, but once I met with my surgeon, then I was "let's get this done" I had some much faith and trust in him. Good Luck to you. And remember, ask questions. I feel that the only stupid question is one that we are too hesitant to ask..
I wouldn't let the doctors tell you there is no chance of repair. I would consult with a surgeon since cardio's don't really know much about what the surgery entails. I, of course, will tell you to look into the davinci robotic surgery if your looking for something less invasive. It worked out great for me so far.
In Dec. 1999 my cardiologist noticed that I had a severely leaky valve and needed my valve replaced. I had my surgery scheduled for Jan 2000 and while already on drugs and getting ready to be rolled back for surgery, the surgeon walked back and asked me if he could try to repair my valve instead of replace it since I was so young. So of course I said yes because I still wanted to have my own child and not be on coumadin, etc... well, after one week of laying in bed and monitoring they informed me that I needed to go back in immediately and have it replaced...
several weeks later when I saw my cardiologist she was very upset because she said that he should've never attempted to repair it and that it was way too bad to be repaired and that I shouldn't have had to go through 2 surgeries in one week.. So, basically what I'm saying is.. just be SURE ahead of time if you've had several people look at your valve and they are saying it's severely leaking and you need to replace it, then if I were you I would replace it and not risk repairing and then have to go back in for another surgery.. although I have much respect for my surgeon, he is known to be one of the best and I know he was wanting the best for me.. unfortunately it just didn't work out.
I wish you the best of luck and sending many prayers your way..
several weeks later when I saw my cardiologist she was very upset because she said that he should've never attempted to repair it and that it was way too bad to be repaired and that I shouldn't have had to go through 2 surgeries in one week.. So, basically what I'm saying is.. just be SURE ahead of time if you've had several people look at your valve and they are saying it's severely leaking and you need to replace it, then if I were you I would replace it and not risk repairing and then have to go back in for another surgery.. although I have much respect for my surgeon, he is known to be one of the best and I know he was wanting the best for me.. unfortunately it just didn't work out.
I wish you the best of luck and sending many prayers your way..
E
Espoe
I had the same thing happen at the same age as you. From finding out to the operating table was about 10 days. The final determination was about 3 days prior so I just went with my cardiologists advice. The valve was repaired and I can honestly say I immediately felt better even though I was so sore I couldn't believe it.
You will not believe what you were missing when you fully recover. I can also say they did an excellent job managing the pain. I really only took pain pills at night to try to get some sleep.
I guess what I am saying is look forward to it. You will get your life back like you were in your 20's. This forum is a huge resource. Scout out the surgical options and valve types. I am currently doing the same thing as my valve repair has failed after 10 years so i will be getting a replacement as well.
Best of luck!
You will not believe what you were missing when you fully recover. I can also say they did an excellent job managing the pain. I really only took pain pills at night to try to get some sleep.
I guess what I am saying is look forward to it. You will get your life back like you were in your 20's. This forum is a huge resource. Scout out the surgical options and valve types. I am currently doing the same thing as my valve repair has failed after 10 years so i will be getting a replacement as well.
Best of luck!
cp172
Well-known member
I highly recommend you get the opinion of a surgeon who has done lots of mitral valves.My surgeon told me there was a 90% chance I would need a replacement so we picked out the On-X. He ended up using the DaVinci to repair the valve. Best of luck to you!
deano89
Well-known member
when i had my TEE they put salt water in through the canular to check if i had any holes in my heart the doctor doing it said i had to cough and if there were bubbles it would indicate a hole in the heart did you have this done as part of your TEE?
the doc said Had no bubbles
the doc said Had no bubbles
C
Curtsmum
My son as had two mitral valve repairs but because his valve is deforned he will be having it replaced, they are hoping to wait untill he gets to 18. Just wanted to say welcome to the forum and to wish you all the best with your surgery. Stick around you will get lots of help and i will be counting on you all, when my son gets a mechanical valve and will need lots of help with the warfarin. Tc
No they didn't do that. They put me to sleep with a light sedative. I am confused though because the doctor who did the echo stated they saw a small hole in heart and the severe leak in the mitral valve and then the doctor who gave results on the TEE said the mitral valve had a severe leak and another valve had a slight leak that was ok, I'm thinking no leak is ok but that is just me. The surgeon (Dr McGiffin) is going to do his own echo before I consult with him. I am ready to see what he sees and what he says. Feb. 27 is when I should find it all out...
Nupur
Well-known member
Carole, my tricuspid valve has a small leak too, they said nothing to worry about. I hope you get all the answers from the surgeon on the 27th. Here are some questions you should ask:
a) repair vs replacement of course
b) Also, ask about the exact anatomy of your valve (you should look at http://www.mitralvalverepair.org/ for pictures). Which part is prolapsed. Normally, a posterior leaflet prolapse is easier to repair. For me, the prolapse is in a segment that is hard to repair.
c) If he is thinking of repair, what exact method is he going to use? Ask about the annuloplasty ring, if he is going to put in one.
d) If he puts in a mech valve, will he keep your chordae?
e) How long will you be on the bypass machine?
f) Is you left ventricle enlarged at this point? If so, how much? Does he expect it to reshape? On the same note, did they tell you what size your chambers are?
In my case, both cardios said even with the severe leak all chambers are great in size so let's wait, and I'd like to hear what the surgeon's point of view is, and then how fast is the size changing or likely to change.
Good luck and keep us posted! I'll be waiting for your post on the 27th after your consult!
a) repair vs replacement of course
b) Also, ask about the exact anatomy of your valve (you should look at http://www.mitralvalverepair.org/ for pictures). Which part is prolapsed. Normally, a posterior leaflet prolapse is easier to repair. For me, the prolapse is in a segment that is hard to repair.
c) If he is thinking of repair, what exact method is he going to use? Ask about the annuloplasty ring, if he is going to put in one.
d) If he puts in a mech valve, will he keep your chordae?
e) How long will you be on the bypass machine?
f) Is you left ventricle enlarged at this point? If so, how much? Does he expect it to reshape? On the same note, did they tell you what size your chambers are?
In my case, both cardios said even with the severe leak all chambers are great in size so let's wait, and I'd like to hear what the surgeon's point of view is, and then how fast is the size changing or likely to change.
Good luck and keep us posted! I'll be waiting for your post on the 27th after your consult!
Nupur,
The results I have say
marked left atrial enlargement
severe mitral annular calcification with heavily calcific mitral valve leaflets with decresased mitral valve excursion opening
borderline left ventricular enlargement
calculated ejection fraction is 39%
and there is so much more...........
The results I have say
marked left atrial enlargement
severe mitral annular calcification with heavily calcific mitral valve leaflets with decresased mitral valve excursion opening
borderline left ventricular enlargement
calculated ejection fraction is 39%
and there is so much more...........
