Bovine tissue valve reop coming....

[mainframe]

Julie,

The funny thing is I didn't really have any signs at first. During a drive from SFO to SEA in one day, I stopped in mid Oregon and had a 5 hour energy drink (not recommended). That really helped with the drive but the next day I felt like I had an irregular heart beat. I went into my GP's office (Jun 09) and he did an EKG which was normal but wanted me to see a cardio as it had been a year and a half or so. On the visit to the cardio (an out of network doc) he said I had "some leaking". He wanted to do a TEE. At that point I decided to get a "in network" cardio and went to my current cardio a couple of weeks later (July 09). He told me he didn't a TEE because he really didn't care WHY the valve was leaking, just the fact that it was probably warranted surgery within the year or the beginning of the next year. I really didn't feel that bad, maybe fatigued at times, but no pain or real shortness of breath. Within 1 month, the shortness of breath became extremely noticeable. I made an appointment with the new cardio again and he said my valve had worsened and now was the time. I was told the regurgitation was severe. I spend a few weeks thinking the local guy the cardio recommended (not Verrier) would do the surgery but he said things to me that made me and my wife cringe, include "we all have to go sometime". My valve continued to deteriorate over the month it took to arrange surgery at Stanford and I was in pretty bad shape prior to my 2nd surgery. Dr. Miller told me my measurement of leakage was as high as it got and the amount of blood being output was at a level where generally they are trying revive the patient.

Your tissue valve can go south pretty quickly. Best to keep an eye on things.

 

[JulieS]

My first cardiologist retired when I was 18, the second retired right after he referred me to the Mayo surgeon in 2000. I had one instance of a echo checkup in 2003 after the first surgery, other than that June 2010 was the other when I started feeling like unhealthy. He has all the records as it is within the same health care system. I was supose to go back to him around Christmas again but....I am not going to. All of the other tests for the arm pain was head and neck MRI and seeing a Neurologist, even as far as a sleep apnea study which.. no I did not have. I did these against my better judgement but I guess IF it helped to figure out the problem I would do it again. I am so happy to extend the reop, I do not want to have it any quicker than I have to. It just does not explain how I feel. It started a year ago... the good ole age of 40. Boy they weren't kidding, it has been one thing after another. All I know for test results was a year ago and that was holding strong at 1.2 valve area 26mean 50 peak at rest and 37 & 63 during exercise. moderate Aortic Stenosis AS with moderate Mitral Regurgitation MR. I am in the process of finding another cardio, my MD is trying to get me to try a newbie just out of school. Which I guess as long as when it is time to fix he refers me to Mayo again. How important do you folks think the Cardio is compared to the surgeon? I know communicaton is key and if you don't connect, run fast. I am still running... Well a fast walk...

 

[JulieS]

Thank you Chris - Holy cow, I think I would have run from that surgeon also. I am glad everything worked out for you. Sounds like a battle for you but you made it! Thank you for the insight. So what happened to cause the tissue valve to fail?

 

[JulieS]

I had a treadmill echo stress test. No dye. That was the last echo I had done in June of 2010. He said he felt it was a false- positive result. Not sure what he meant by that but, he said everything was fine, call back if I feel worse before he sees me again. I will be sure to start asking for copies. Thank you.

 

[kfay]

My first cardiologist retired when I was 18, the second retired right after he referred me to the Mayo surgeon in 2000. I had one instance of a echo checkup in 2003 after the first surgery, other than that June 2010 was the other when I started feeling like unhealthy. He has all the records as it is within the same health care system. I was supose to go back to him around Christmas again but....I am not going to. All of the other tests for the arm pain was head and neck MRI and seeing a Neurologist, even as far as a sleep apnea study which.. no I did not have. I did these against my better judgement but I guess IF it helped to figure out the problem I would do it again. I am so happy to extend the reop, I do not want to have it any quicker than I have to. It just does not explain how I feel. It started a year ago... the good ole age of 40. Boy they weren't kidding, it has been one thing after another. All I know for test results was a year ago and that was holding strong at 1.2 valve area 26mean 50 peak at rest and 37 & 63 during exercise. moderate Aortic Stenosis AS with moderate Mitral Regurgitation MR. I am in the process of finding another cardio, my MD is trying to get me to try a newbie just out of school. Which I guess as long as when it is time to fix he refers me to Mayo again. How important do you folks think the Cardio is compared to the surgeon? I know communicaton is key and if you don't connect, run fast. I am still running... Well a fast walk...

Julie, Why are you waiting for them to refer you back to the Mayo if you've already been there as a patient? Unless your insurance requires that, I would pick up that phone yourself and call them and schedule an appointment. It sounds like that's where you are planning on ending up anyway, so why would you wait? My cardio and surgeon there are both fantastic and are very responsive to me anytime I e-mail or call with a question. They even have me send any test results I have done locally there to them for their review in between my visits. I just think it would put an end to the question in your mind about what might really be going on for good and you don't need to wait for your Dr. to give you the green light to make that call. Good luck.


Kim

 

[Mentu]

Julie, if you trust your regular doctor's recommendations, you would seem to have little to lose in the short term by trying the young doctor. What ever surgeon and hospital you choose, your cardiologist is going to help manage your care otherwise and will probably be needed to make the referral to the surgeon. Find one that will talk to you and, especially, listen to you. You pay your doctors; they work for you. If they don't provide the service you need, there are more out there to choose from.

Larry

 

[Lynlw]

Julie, Why are you waiting for them to refer you back to the Mayo if you've already been there as a patient? Unless your insurance requires that, I would pick up that phone yourself and call them and schedule an appointment. It sounds like that's where you are planning on ending up anyway, so why would you wait? My cardio and surgeon there are both fantastic and are very responsive to me anytime I e-mail or call with a question. They even have me send any test results I have done locally there to them for their review in between my visits. I just think it would put an end to the question in your mind about what might really be going on for good and you don't need to wait for your Dr. to give you the green light to make that call. Good luck.


Kim

I agree with Kim. Especially since you aren't really getting any answers.
I'm a little confused, IF your cardiologist retired in 2000, and your current card is new, does that mean you weren't having check ups in between?
I would definately be calling your doctors at Mayo, especially since you can't seem to get answers from your current docs.

 

[JulieS]

Julie, Why are you waiting for them to refer you back to the Mayo if you've already been there as a patient? Unless your insurance requires that, I would pick up that phone yourself and call them and schedule an appointment. It sounds like that's where you are planning on ending up anyway, so why would you wait? My cardio and surgeon there are both fantastic and are very responsive to me anytime I e-mail or call with a question. They even have me send any test results I have done locally there to them for their review in between my visits. I just think it would put an end to the question in your mind about what might really be going on for good and you don't need to wait for your Dr. to give you the green light to make that call. Good luck.

Hi Kim -
Yes insurance and distance and the only person I saw there was the surgeon, after the surgery I was told to just follow up with my local cardiologist. Which I did a couple of times and then... he retired. The only thing I ever heard from Mayo after was two surveys. I guess I was waiting for the time to get close like before, then the cardio sends the info to the Mayo Surgeon for review and he calls and we discuss findings. My first Cardio surgeon (local) actually was the one to tell me that she preferred to refer me to the Mayo surgeon as he could do more for my root than she could. So I didn't have to ask. I guess I am just assuming the same procedure follows this time too and I will need a cardio here when I return. That one I have to find yet. I fired the last guy although he just doesn't know it yet. Maybe I need to rethink this.... what would you folks do?

 

[JulieS]

I agree with Kim. Especially since you aren't really getting any answers.
I'm a little confused, IF your cardiologist retired in 2000, and your current card is new, does that mean you weren't having check ups in between?
I would definately be calling your doctors at Mayo, especially since you can't seem to get answers from your current docs.

Hi Lyn -
Your right. After the initial checkup after surgery he told me to call if I had any problems and that was it. I had one episode in 2003 that landed me in the ER, had an Echo that was reported to me by my Nurse practitioner but he was gone by then. It was Feb 2010 I really felt crappy. I waited until June to see if it got better and didn't and that was when I asked if I could see a cardiologist for a checkup and not a NP... and met the one I don't like. I am sure he is good but alot of things happened that just turned me off besides his comment and no info. They never called me back with any of my results, I called 2 months later. I never saw the Cardio to go over any test results because... They forgot....The girl answering the phone put me on hold came back and told me everything was normal and to call back if I feel worse. What? If it were normal I wouldn't need a cardio and I am glad you can charge me 600.00 for a 60 minute cardio one on one consultation on my bill when it turned out to be 1 minute with a receptionist. I am usually a very quiet passive person, nothing much gets me worked up but that one did... You FORGOT! I work in customer service/sales for windows.....that excuse surely wouldn't fly if I tried that with one of my customers for a window crank much less for a person with heart disease waiting for results... Sorry for the side tracking there. So that is where I left off last June. Very unhappy, oh yeah in that time also about December I was consumed with having to seeing an oral surgeon for oral dysplasia removal. So the 3 month check ups for that have me a little stressed also. Holy Cow turning 40 was something. Thanks for the ears.

 

[kfay]

Julie, Why are you waiting for them to refer you back to the Mayo if you've already been there as a patient? Unless your insurance requires that, I would pick up that phone yourself and call them and schedule an appointment. It sounds like that's where you are planning on ending up anyway, so why would you wait? My cardio and surgeon there are both fantastic and are very responsive to me anytime I e-mail or call with a question. They even have me send any test results I have done locally there to them for their review in between my visits. I just think it would put an end to the question in your mind about what might really be going on for good and you don't need to wait for your Dr. to give you the green light to make that call. Good luck.


Hi Kim -
Yes insurance and distance and the only person I saw there was the surgeon, after the surgery I was told to just follow up with my local cardiologist. Which I did a couple of times and then... he retired. The only thing I ever heard from Mayo after was two surveys. I guess I was waiting for the time to get close like before, then the cardio sends the info to the Mayo Surgeon for review and he calls and we discuss findings. My first Cardio surgeon (local) actually was the one to tell me that she preferred to refer me to the Mayo surgeon as he could do more for my root than she could. So I didn't have to ask. I guess I am just assuming the same procedure follows this time too and I will need a cardio here when I return. That one I have to find yet. I fired the last guy although he just doesn't know it yet. Maybe I need to rethink this.... what would you folks do?

I'd be picking up the phone and call the cardiology dept. at the Mayo and make an appt. I can't believe your local cardio had you going all those years without a checkup! I'd be happy to pm you the phone number for cardiology there. It is not a big deal to call them yourself and make an appt. I realize it might involve some travel on your part, but unless you can find some better local care, I'd think it would be worth it for the peace of mind.

Kim

 

[Lynlw]

I'd be picking up the phone and call the cardiology dept. at the Mayo and make an appt. I can't believe your local cardio had you going all those years without a checkup! I'd be happy to pm you the phone number for cardiology there. It is not a big deal to call them yourself and make an appt. I realize it might involve some travel on your part, but unless you can find some better local care, I'd think it would be worth it for the peace of mind.

Kim

Once again I agree with Kim.
My guess why they didn't have you continue to travel there for the rest of your life and told you to follow up with your local cardioloigist, was they assumed your local guy would have you do yearly or every 2 year check up likes most everyone who had heart surgeries would/should have.
Since the local docs seemed to really drop the ball with you, i would call the Mayo (when you said insurance is an issue do you mean you have a HMO type that you need referals from your GP to go to a specialist? If so i guess you would have to ask them to give you a referal)
Anyway I really think, you should set up an appt at the Mayo and they will most likely run whatever tests they need to figure out why you are having the pain and how your heart and valve are doing. When you are at the mayo, I would ask them if they can recomend any good cardiologists that are closer to you, since people travel from all over to the mayo, they probably have good working relationships with local cardiologists from all over.

 

[Michellemar]

Hi, Julie, I don't know anything but I agree with Kim. And why were you being seen at such a young age to begin with???
Hope you get back to us, here....I'm new, too...AR on April19, less than 2wks from now, and what a show I feel I'm dealing with here sometimes, but these posts by so many people are so very helpful in...count the ways, as in...
A year can be a long time. I was holding at 1.5 and then went to 1.1 and south before I really even knew actually what the fuss was all about. Why an echo in 2003, and seven years go by....well, you're here, now (hooray!!), so keep going! Michelle

 

[JulieS]

Hi, Julie, I don't know anything but I agree with Kim. And why were you being seen at such a young age to begin with???
Hope you get back to us, here....I'm new, too...AR on April19, less than 2wks from now, and what a show I feel I'm dealing with here sometimes, but these posts by so many people are so very helpful in...count the ways, as in...
A year can be a long time. I was holding at 1.5 and then went to 1.1 and south before I really even knew actually what the fuss was all about. Why an echo in 2003, and seven years go by....well, you're here, now (hooray!!), so keep going! Michelle

Hello Michelle-
I was born with Congenital heart disease. So every 3 years for as long as I can remember I would go to the cardio for check ups. Always good checkups until the 30 year mark. Which we knew eventually that day was coming. Everything was great, uneventful, textbook - In 2003 I got this strange pain in my left collar bone area, it would just creep in and creep out along with a low grade fever. That went on for about 8 months. It was the oddest thing, if I were to describe it it was like someone broke my collar bone. The one night it got so painful I could not handle it, just trembled with pain it drove my heart rate up and stayed up that they did the heart tests etc...As it turned out, they never did actually diagnose that problem. I know I had heavy antibiotics for awhile and eventually it did go away. I know they were leaning toward pleuracy (spelling) but really never confirmed that. Other than that everything has been textbook, I am not one to go to the doctor unless I need to. Which I used to think was a good thing, means your strong, can handle most anything. Saves money etc... I have now come to realize that being proactive is way better than being reactive which is how I always have been in the past. Catching a health issue early is so important, even if you don't feel sick doesn't mean there isn't a problem. So after 2010 I vowed to be proactive and stick to an annual visit. Dental and regular physical.

Did you pick your valve yet? Sometimes things can be trying to say the least ha! I wish I had this forum back then. Such great people and advise or just an ear because we are all in the same boat.