Disappointing Results

[tex4ever54]

Greetings All:

I just got back from visiting my Cardio and am pretty disappointed. Prior to surgery my heart function was at 55% which is borderline. I was in pretty good physical shape being able to run 55 minutes on an elliptical trainer 4 times a week and swim 30 minutes 3 days a weeks. The cardio told to quit working out so much and that I needed to have my aortic valve replaced within two months before my heart got damaged beyond repair. I was told by my Dr's that I would feel much better after surgery and would even be able to resume lifting weights after recovery. Well here I am 2 months post op and my heart function is now 28%, having CHF, and my heart is negative remodeling. I can ride a stationary bike for only 10 minutes at a time before my HR and BP gets too high. I get short of breath just walking from my car to my office. Now my cardio's story is that a third of AVR patients patients get better, a third stay the same, and a third get worse. I am now taking Altace, Digoxin, and Lasix and may possibly start a beta blocker soon in the hope that they will reverse the downward trend taking place now. Were any of you guys told that there was a chance you would actually come out on the other side in worse shape than before surgery? Have any of you experienced the same thing post-op? I will stop venting and await your replies. Thanks in advance!!!

 

[Yaps]

I am so sorry you arent well.
This happened to me as well, 2,5 months after surgery, still swollen .,horrible chf, still was having angina.
My surgery happened very fast, came home from work one night, then to 1 er, angina ,sob, o2 level was 80... fingertips were blunting..they me sent by ambulance to another hospital, cath and ohs valve same day.
To listen to the drs I should of been able to leap tall buildings in a single bound!Ha! Didnt happen....all 4 arteries had reblocked.. my entire left side had no b/p, I mean none .But getting some (not all) of the cardio's to listen was sad.Finally after 4 mnths they did another cath.. they said whew good thing! I was hanging by a thread (their words). Ive got to go in and out of hospital apprx every 3 mnths now. A total of 17 stents, lol..I clank....Its hard sometimes to make them see, which I can understand..they want to have done a good job... sometimes fate wont allow it , your ef is very scary, mine has dropped as well but only to 49 from 70..get on them..you may have an occlusion somewhere.. I did..many love the pup

 

[karlaosh]

I'm so sorry you're having such a hard time. I've NEVER encountered stats like the latest ones your cardio is quoting (1/3 get worse) and I've done a LOT of medical research on this issue.

Get a second opinion. Something else must be going on.

 

[catwoman]

Now my cardio's story is that a third of AVR patients patients get better, a third stay the same, and a third get worse.

Wonder where he gets those statistics?????

Sorry to hear that you're having problems.
Did you go through cardiac rehab?
BTW, what is "negative remodeling"?

 

[Phyllis]

I've never heard of stats like that either. Who did the surgery and any chance of going back to the surgeon for another opinion? I would definitely seek out another opinion.

 

[tex4ever54]

Negative remodeling

Negative remodeling

Wonder where he gets those statistics?????

Sorry to hear that you're having problems.
Did you go through cardiac rehab?
BTW, what is "negative remodeling"?

Cool buzz word , huh! Remodeling is the process that your heart goes thru after surgery to reshape itself back to normal. My heart had enalarged so theoretically, it should start to shrink post surgery. My heart has enlarged rather than shrink thus the term negative remodeling.

 

[M&M]

tex4ever54, I think your doctor has the wrong attitude. I've seen that attitude and generally its when they don't want to take the time to find out what's going on or your asking for physical ability beyond what they think you need to have...

I had terrible shortness of breath a couple mos after my surgery (mitral) and my husband kept telling me it was because my lungs had not fully healed from mys surgery and it would get better. Well, I just 'happen' to be in my cardio office and they had me hooked up for my ICD interrogation (ekg) and I was in 'full heart block'. It was just 'luck' that it had happened that day and that particular moment - as I was in intermittent full heart block.

Shortness of breath is usually caused from something - I would get a second opinion. Your cardio must be missing something. Are you feeling any arrhythmia? Dizziness, - anything

I would ask for an stress echo test - since its hard to breath when your exerting yourself that might be a good place to start looking.. There is a reason for your shortness of breath.

I get so angry sometimes - I mean we go in their office, we sit, and we talk -how the hell can they tell if something is wrong.. They always tell me - You look so good Marilyn.. and of course I bring in medals from my running races - so they never take me seriously when I complain.. I generally tell them what I want - as I know my body better than anyone else. They give me what I want or I find a new doctor.. Its simple.. They don't generally deny anything you ask for.. They might say its a waste of time - but hey its your time.. I don't always hit the nail on the head with the first test or holter monitor - but I generally do on the second test.. They need facts and you need to tell them which tests that you think will get them the facts..

Your the customer and they work for YOU......................... or you get a new doc..........

Good Luck
Marilyn (runner)

 

[KimC]

Tex,

I've been a participant in VR.com for a couple of years, and have read a few posts similar to yours. What I've learned through my own research, experience and listening to others, is that heart function can improve over time with medications, diet and exercise. Four months or two years from now you may not feel the way you do today. Ejection fractions can improve. You need time to heal.

Yaps also gave some good advice -- could you have a secondary condition impacting your recovery, such as coronary artery disease? I hope you're exploring these kinds of questions, even by seeking another opinion if necessary.

If I may say so, battling hopelessness is key to your recovery and survival. You may not be living the life you did last year, but be proactive. Look for new satisfaction. I've lost the high of sports but discovered nuances of joy in music, books and deeper relationships. Your life isn't over. Don't let the illness rob you of hope.

Best,

 

[Karlynn]

Tex, so sorry to hear of your extremely frustrating situation. Don't take "no" for an answer. Get a second, third, fourth.... opinion. Speak to your surgeon again. Find a heavy hitter in the field of cardiology to consult.

I also have never heard of the 1/3 scenario. With those stats, who's going to risk it until they have 1 foot in the grave. I just don't believe those stats. My guess would be that most people feel better, some feel the same, and a very unlucky few (our dear Yaps) feel worse.

Get a new doctor soon. Have them redo blood work. Possibly seek the consult of another surgeon, on the off chance that something wasn't done correctly in surgery.

You have my prayers and best wishes.

 

[M&M]

I forgot to tell you on my last visit with my cardio - once again I had been complaining about my 'program' on my ICD - as I was having shortness of breath and since he's my electrician and he did the programming he thought it was fine. The nurse came in and told me my standards were to high.. but I walked out with a holter monitor - sadly I had not 'events' that month.. I wasn't sure I was having them. But I did some more investigation in regards to my programming as I was sure the machine was holding my heart beats back.. I couldn't get my heart rate over 75 bpm. No wonder I was tired and not breathing when I exerted myself.. I thought for sure its the programming.. But he didn't think soooo..

Well anyways, I talked to some other people and come to find out I had been programmed for the DDD program and not the DDDR program - and there's a big difference !!! "R" stands for rate response. So I ask my EP doc for the DDDR program - he said come on in and I get in his office and I'm hooked up to the ICD computer and he looks at the monitor and then looks at me and says: See Marilyn I'm going to turn your 'sensor' ON.. No wonder I wasn't breathing !!! He smiled at me and said: See your sensor is now turned ON - now that made quite a bit of difference in my breathing.. I'm telling you - you really have to do the work sometimes.. He was quite happy that we had remedied the situation. He was very happy for me.. I think he just 'missed' the "R" when he first programmed me and didn't think to check it again.. When I was leaving he said - he would be more than happy to tweak it some more if I needed it and don't hesitate to call him. He's a great doc - dont' get me wrong - he is GOOD.. He always gives me what I want - and that is a great doc...

You know the only thing I'm lacking with all my devices is a remote control.

I hope you find the problem. Don't give up and don't give IN.. Took me mos to get my situation remedied - but this program is alot BETTER..

Marilyn

 

[KenKeith]

Hi Tex,

Why was it necessary for OHS? I had severe MR due to a silent MI (totally bliocked LAD, and 2 other coronary arteies partially blocked)that damaged the LV and compensation resulted in an enlarged left ventricle chamber; the enlarged LV caused MR. My EF was 13%. Subsequent to going to ER with pulmonary edema a stent was placed in one artery and a regime of medication..

After 10 months, medication has reversed remodeling, MR is now moderate/severe and chamber sizes are within the normal range. EF is 50%. Except for the edema event I was asymptomatic and continue to be the same. I was and continue resistance training and aerobic exercises.

There are guidelines to follow when to perform ohs for valve issues. Generally the basis is whether or not there are symptoms, EF<50% and/or LV >4.5. This is by no means the entire criteria to be evluated before a decision, but your statement "I was told by the doc I would feel better after surgery". Apparently you had symptoms!!

Reverse remodeling should begin as the medication will keep your system from compensating by reducing your heart's workload.

 

[Nan]

Hi Tex, I am just adding my voice to those who have suggested that you get another opinion or press your doc a bit more. I have never seen those stats anywhere either! And it also may take time for your heart to recover from the "insult" of surgery, and all of the trauma. It doesn't always happen in a few months, sometimes more like a year. So don't get feeling too down, and do try and get some more answers from perhaps another doc!

Good luck,

 

[tex4ever54]

Greetings All:
You guy's should love this story. After talking to my younger brother about the same things in my earlier post, he becamed concerned and called the folks at MCRI. MCRI are the makers of the On-X valve that we used to replace my aortic valve. They had representatives on hand at my surgery as I had requested that my surgeon use the On-X valve and he had never used it before (long story - posted earlier somewhere on board). Apparently my brother had made contact with one of the reps there and still had their business card. After talking to them they called me up to check up on me and I filled them in on the lower heart function, edema, and my cardio's opinion that a third of us just get worse. They urged me to get back to my surgeon ASAP to which I replied that I had an appointment next month and would probably wait and see how I responded to the meds until then. I then slipped out of work to see Star Wars (great movie). When I got home, I had three messages from my surgeon telling me that the reps from MCRI had gotten in contact with him and informed him of the things had I told them and that he wanted me to fly in ASAP and get these problems resolved. He said that at age 50 and being in the physical shape I was in prior to surgery I should be in much better shape than I am at present. I am bit embarrased that people I have only spoken to on the phone had to call on my behalf to make me into action but at the same time am impressed that they to took the time to call the surgeon for me. Anyway, I am off to Dallas Monday and will let you all know the results!!!!!

 

[Yaps]

My prayers go with you, I know just how you feel. Love the pup

 

[tobagotwo]

I didn't want to jump on the already large (and totally correct) bandwagon telling you that that the "1/3 get worse" statistic came out of your cardio's behind. However, I do want to say that I've been reading this, and concerned, and that I want to be among those telling you that your plight will be on my mind this week.

When this is over, get rid of that quack, and get a decent cardiologist.

Good luck,

 

[KenKeith]

Although I have moderate/severe MR, I feel great before and since my dx a year ago. Also I have exercise tolerance, and it would take unbearable symptoms or circumstances to undergo a procedure where a surgeon saws open the chest and performs surgery on the heart. The inherent risk outweighs a potential benefit when there is no benefit to realize other than a projection there may be a future problem that may or may not materialize.

The poster must have had symptoms otherwise a cardio would wait and watch. The symptoms now expressed by the poster is unfortunate and we shall wish him the best.

 

[Harpoon]

I'm so sorry you're having such a hard time. I've NEVER encountered stats like the latest ones your cardio is quoting (1/3 get worse) and I've done a LOT of medical research on this issue.

Get a second opinion. Something else must be going on.

I'm backing that one up...

A third get better, a third stay the same, and a third get worse???

Well if that's true, how come something like 90+% of all patients treated at Cleveland Clinic's Heart Center are treated successfully? How come their death rates are so low?


Come on, that cardiologist might be quoting his OWN results, not national averages or statistics.....


Definitely time for a second opinion. Talk to your primary physician about it or fire off a request to a major heart hospital like Cleveland Clinic of Mayo or whatever... There are a number of good hospitals that people here have been to and have done well with. I'm partial to Cleveland Clinic for all kinds of reasons, but that doesn't mean they're the only option.


By the way, if those were the odds, surgery would be off the table as an option except in the gravest of situations where no other course will offer a chance for sustaining life. Surgery in and of itself comes along with risk and if there was only a 33% chance of making any improvement above and beyond your current health compared to the SAME odds of making it WORSE, I doubt any competent doctor would reccomend it.

 

[perkicar]

I didn't want to jump on the already large (and totally correct) bandwagon telling you that that the "1/3 get worse" statistic came out of your cardio's behind. However, I do want to say that I've been reading this, and concerned, and that I want to be among those telling you that your plight will be on my mind this week.

When this is over, get rid of that quack, and get a decent cardiologist.

Good luck,

Being 11 days post surgery and still feeling a lot punky, I wasn't too thrilled to be reading this stuff myself. But it never fails that when you tell someone you've had AVR, they always can tell you about some acquaintance/relative/friend who had it done and then had some crisis befall them. It's all I can do to tell them "I just don't want to know about that!" I worry myself enough without having these little statistics to put in my bag and pull out and stress over LOL.
I"m glad your brother pulled some strings and got the ball rolling in the right direction. Please let us know what you surgeon has to say after your appt this week.

 

[T-Money]

Hi,
Sorry to hear of your plight and extremely sorry to read what is happening to you so soon after surgery. I think it is time to see someone else. That ejection fraction is really low. If they wanted to do surgery on you when it was 55%, they should be busting the door down and dragging you to the hospital if it hits 28%. It sounds like the cardio knew what he/she was talking about up until the 1/3, 1/3, 1/3 bit. I would go see a new cardio and I would try to get one affiliated with a big hospital housing a quality cardiac program. Get the best one your insurance will cover/you can afford and don't look back. This is a time to be very demanding and insist on getting it right. Know that you will be in my thoughts and prayers.

 

[Karlynn]

How you got the quick response doesn't matter (but just a little lesson on being proactive, one we all have to learn. ) I'm glad you're on your way to see your surgeon. Best wishes. We will wait anxiously to hear what he has to say. You'll be in my prayers.