13 years with my porcine valve and having troubling symptoms

[Penny2003]

Hello to all! I was a member 12 years or so ago when I was facing my AVR surgery. I really appreciated all the information that I was able to get from you all, am very glad the site is still up and running for all of us that look to find some answers to their questions. ​
I had the AVR surgery in March 2003 and except for a few glitches along the way (tamponade and pericardial window) have been actively living my life. During the past 5 years, my valve is getting a bit narrow, and is now at 1.2 squared (?). I am not very athletic, but I do attend Cardiac Rehab 3 times a week, The past 5 weeks I have become short of breath while exercising and increasingly sob at night. Called my cardio, got the PA response to double my Lasix for 5 days. I lost 5 pounds of water weight and felt pretty good for a week and now I am back to the shortness of breath again, but no swelling in the ankles or feet. Guess my next step is to call them back and see what happen next. My cardio doc kept saying I would be a candidate for the TAVI, but from what I"ve read I couldn't be. I have no other big issues than this.
question..... would the Lasix doubled keep fluid out of my abdomen for just a week, hence the return to the shortness of breath? Doubling the Lasix gave me muscle cramps and charley horses in my calf that wouldn't go away for days. My doctor says he has patients with no sypmtoms at .5 aortic area and no sypmtoms, so they do not do surgery until symptoms present. It would scare me to get to that number. Being short of breath is very anxiety producing, especially at night . I'll be using 2 pillows tonight LOL.

Well it's Friday night and all of you that aren't retired are probably tired from your work week. All have a nice weekend. Looking forward to being in the community of heart valvers again!

Penny2003

 

[honeybunny]

First, I want to suggest that the anxiety from SOB is contributing to the SOB. That's what happens to me at times. I focus on it and it seems to get worse. Just something to think about. As for fluid build up, I take Lasix only as needed when I have swelling in my feet. That might be once a week. Not exactly the same scenario as yours but somewhat a model; my ratio of "no pills/fluid build up/one pill" vs your "one pill/fluid build up/two pills", if that makes sense.

I'm surprised your cardio has not brought you in for any testing.

 

[JulienDu]

I am not sure to understand, did you ask your Doctor about TAVI or you only think through your reading that you could not get it ?

 

[MethodAir]

Sorry to hear about the troubling symptoms. It would appear you need to act fast before serious damage sets in. It's not anxiety, your body is basically telling you something very serious is going on (ie advanced congestive heart failure). Be careful with the lasix, it is a dangerous drug and has caused many deaths in the fitness industry.

 

[Penny2003]

Thanks for your replies, and I will certainly follow up with my cardiologist. JulienDu, to answer your question, it has been my doc that keeps talking about me having the TAVI. From what I have read, it is only for high risk patients that wouldn't be a candidate for open heart. I am 68 years young, with no other serious conditions so I guess I am confused as to why he would be talking to me about it. Guess that is a conversation I should be having with the Doctor so I am clear about this. I do have faith in him, my daughter is a nurse that takes care of his patients pre and post op, and feels he is a great cardiac physician.
Thanks again!

 

[epstns]

Penny - It does sound like your problem is being exacerbated by fluid retention. While we don't know the precise cause of the fluid build-up, it seems that when it is treated, your quality of life improves. I second the motion that you have an in-depth conversation with your cardio asap. While medical treatment is a potential strategy in the short term, it may not be best in the longer term. You need to get to the root cause of the fluid build-up. If it can be treated medically, then perhaps you can buy some time. If it cannot or should not be treated medically over the mid-to longer term, I would then say that you are, in fact, presenting symptoms and should be counseled about potential surgery.

I'm not trying to scare you, but you do need to know the docs' best estimation of what comes next in order to plan and conduct your life.

 

[MethodAir]

I would be asking for an echocardiogram asap. With your congestive heart failure symptoms, serious damage to your left ventricle can happen very, very quickly.

 

[Penny2003]

Another Friday is here! Weeks go fast when retired. I am on another round of doubling up on the Lasix, to 40 m a day which I guess isn't a huge dose. Then after 3 days on had labs this am to check kidney function. Will hear from doc office Monday with results. Had a weight gain of 7 pounds over a 3 day period and even with the lasix this time not dropping the water weight as well. To make the above long story short, will talk to doctor staff on Monday and I will be pushing them towards an echocardiogram. My doc is on vacation, wish he were around. Thanks all

Penny

 

[dornole]

By all means ask for an echo, with moderate aortic stenosis and symptoms. My cardio always makes me SWEAR I will return early if I have symptoms.

I have mitral stenosis/regurgitation not aortic but this list of symptoms sure sounds like it could be you: (for congestive heart failure due to mitral stenosis, which I experienced - I had the SOB, fatigue, swelling, and heavy coughing and bloody sputum esp at night)
You may feel fine with mitral valve stenosis, or you may have minimal symptoms for decades. However, mild problems can suddenly worsen. See your doctor if you develop:

• Shortness of breath, especially with exertion or when you lie down
• Fatigue, especially during increased physical activity
• Swollen feet or legs
• Heart palpitations — sensations of a rapid, fluttering heartbeat
• Dizziness or fainting
• Heavy coughing, sometimes with blood-tinged sputum
• Chest discomfort or chest pain
• Severe headache, trouble speaking or other symptoms of stroke

Glad you are planning to call on Monday. See another doc if yours is gone. Cardiologist, not your primary provider.

 

[Penny2003]

Had labs and kidney function is within normal range, but B-type natriuretic peptide elevated slightly to 200. Getting water weight off and then going in for echo. Then we will see! I worked in a hospital setting for 25 years and am disappointed in myself that I hadn't pushed for more information sooner. To me "Information and knowledge is my weapon against illness and anxiety." I like to know so I can make informed decisions. After all, I am the one to benefit no one can do it for me. Thanks to all!

 

[Penny2003]

Hello all! After many doctor visits and what seemed like forever, and to make a long story short: I had SOB, water retention extreme fatigue and chest tightness when exercising. My echo was fine, no big changes but my cardiologist recommended a sleep study(I have used CPAP since 2012). My sleep apnea had gotten much worse and I was not getting the oxygen that my body needed. I am 3 weeks into the new settings on my CPAP and starting to feel better. Not as tired, but still have problem with retaining fluid. My doc says that along with weight loss and the upgrade on my CPAP that I should be ok with that also. He wants me down to my pre-surgery weight which means 30-40 pounds. It is discouraging to look at the total I need to lose, but I am setting smaller goals and taking one day at a time.

 

[Catie]

I'm so glad that the puzzle is now solved and that the issues aren't heart-related.

I lost around 35 in the last year and I haven't been this size in decades. You're right that small steps and progress will encourage you, You can do it!