new member with ?? about dh's aortic stenosis (long)

[Dawn]

Hello. I am Dawn, married to my sweetheart, Lewis. He is a 34yo gunny in the US Marines. Back in 1998 we noticed a lot of changes in him when he was in a school that requires even more physical training than the Marine Corps already does. He seemed more fatigued and irritable than usual. After months of my gentle nudging, he finally made an appt. They heard a heart murmur that nobody had ever paid any mind to before. After testing, turned out to be bicuspid aortic valve.

With that first echo his valve was 2.0cm. They were not concerned He was found to have high bp and they put him on verapamil. He hated that stuff and thankfully we discovered that when he ate two cloves of garlic a day it would regulate his bp! He preferred that much better. Doc said it was okay as long as it continued to work. We keep an eye on it.

Last year he finally quit the rigorous pt schedule, as he found it too much. He was having chest pains, too. That seemed to stop when he started taking it much easier. Early this year, though, we noticed that he was having trouble doing any physical training at all. On those days he did he would be exhausted the rest of the day.

He had his 2nd echo in Jan, about 3 yrs after the 1st. Our internist had gotten out of the Navy so we saw a different one who let us know that a new cardio was coming to the base this summer. Meanwhile he went over the results from the recent echo with us. This one showed his valve was measuring 1.25.

I asked doc if that wasn't a bit fast for it to change that much in 3 yrs. He said it appeared to be kind of fast, but tried to brush it off. He was somewhat concerned about the symptoms Lewis was having.

Lewis will finally get to see the cardio Sept 3. In the past months since he saw the internist it appears to us that he has gotten even worse. He seems so fatigued compared to ever before. Especially after dinner. No matter when we eat, early or late, afterwards he can hardly stay awake.

Also, his bp wasn't staying down with the two cloves of garlic anymore. He upped it to 4 and once again it is fine, so far. So that is another change.

Today he noticed that his feet swelled up with just normal standing and walking around the house, like he always does. This has never happened to him before.

So often he doesn't feel like "himself" anymore nor does he act like it. The only physical training he gets and can handle at this time are family bike rides and walks. Those don't seem to bother him.

Now, one of our daughters (we have 5, and 3 sons , who is 10, was born with pulmonic stenosis. They removed her valve at 12 days old. She was discovered to have ASD 2 yrs ago and they put in a device to fix that. That summer the ASD was discovered, what got us wondering if something else was going on is mainly that she was unusually irritable and would fall asleep at the dinner table, literally could not keep up physically. So we took her in and her new, wonderful ped caught the problem.

So...this has us wondering about Lewis. Here he is having similar problems it appears.

Of course, we are definitely getting him in to have it checked out. They couldn't get him in sooner than Sept 3. But meanwhile...I found your board and saw that some here have the same condition. I was just hoping that I could get some feedback on what we are experiencing. Has anyone noted similar things? Are these things normal for someone with this condition? Are these signs that things may be getting worse?

It is helpful to be able to read about other's similar experiences. We also have a 6yo daughter who has a very rare tumor. With that (only about 50 diagnosed cases) it has been a blessing to connect with the other families who are experiencing it to share info and network.

Forgive me if my sentences are disjointed here. It is late and I am not thinking clearly.

Sincerely,

Dawn

 

[Ross]

Hello Dawn and welcome to the forums.

Everything you describe is normal for someone with valve problems. The fatigue, swelling, etc,. I am concerned about the swelling. If it's at all possible to get him in before the 3rd, I think that would be to his benefit. Is he showing any signs of major breathlessness? If so, he may beginning to have some CHF or congestive heart failure. Not saying this to scare you, but look closely for it as it sometimes disguises itself as bronchitis or similiar. Does he seem to be coughing more then usual?

I'm sure others will add on here soon. Weekends are kind of slow here, but someone will be along soon.

Again welcome,
Ross

 

[EVELYN]

Good Morning, Dawn, (No pun intended) and WELCOME!!

This is a great site and you will receive many opinions and answers here. Everyone here knows of what they speak. They either are heart patients or have spouses/significant others who are. I'm a spouse of one who had AVR last year.....I know I couldn't have existed without this site....it has been a Godsend to me.

I would have to echo what Ross said about the swelling....edema in any form scares me with the heart because to me it means the heart is not pumping sufficiently. I would agree that I would try to get in a bit sooner, if at all possible.

Sometimes you have to be the proactive---or should I say "pushy" one.

Again, welcome and please keep us posted.

Evelyn

 

[Yokena]

Bicuspid Aortic Valve

Bicuspid Aortic Valve

Hi Dawn! Sorrry to hear your Lewis is having problems, but you've logged on to a good spot to get some info and support. When you go to see the cardiologist, be sure to take notes on what you're told so you can remember it all correctly later. Then go online and look up everything so you are sure you understand it all.

I'd also suggest you check out the Adult Congenital Heart Association web page at:

http://www.achaheart.org//index.php

They have lots of good info about congenital heart defects like the bicuspid aortic valve. I have a bav, in addition to a couple of other congenital heart defects. What's going on with Lewis sounds very typical. Good luck to you both!

Joyce in Mississippi
Bicuspid Aortic Valve
Ebstein's Anomaly
Right Bundle Branch Block

 

[ALCapshaw2]

Hello Dawn,

I concur with the suggestions to have him seen by someone ASAP. If his symptoms (shortness of breath, falling asleep readily, passing out) become worse, I would get the ER immediately.

Excess fluid retention can exacerbate valve problems and symptoms. A doctor or nurse can perform a simple test to check for fluid retention by pressing on the lower shin bone. If an indentation forms and remains visible for more than a few seconds, it is likely that he has excess fluid. If that is the case, he needs to be seen by a Doctor for treatment.

'AL'

 

[Nancy]

Hi Dawn-

Welcome to this terrific site.

I am sorry to hear that your husband is having all these difficulties, but this is a board where everyone understands. My husband has had 3 valve surgeries, as the result of having had rheumatic fever as a teenager. He also has a pacemaker, and has had 2 lung surgeries, plus he suffers from several other major problems, including CHF (congestive heart failure), and has for many years.

I agree with what everyone else has said. Please keep track of his edema. Have him weigh himself each day in the morning w/o clothing, at the same time before breakfast. If there is any gain of 3 pounds in a day or 5 pounds over several days, call his doctor immediately for instructions. My husband is on a regular dose of diuretic (Lasix) twice a day. But when he has this kind of weight gain, we have to call the cardiologist for instructions, and he is usually put on additional Lasix or if it is too bad, Zaroxolyn. When the fluid goes away, then he returns to his normal dosage.

He also has to keep to a very low sodium diet. This helps the body to shed the fluids more easily. That is something you should be doing for your husband.

CHF is something which can be successfully controlled most of the time, but it requires vigilance. If it gets too far afield, it can cause very serious problems. My husband has been there, done that, and it isn't something you would want to happen to your husband. He came close to dying in December of last year. He started to slip into a coma and was into kidney failure. That's why we are very careful of his condition.

Right now, on Monday, please call his doctor and explain what has been going on. And as everyone has said, if he is short of breath, is sleepy, cannot sleep without several pillows, or is waking in the middle of the night with breathing problems, take him right to the ER asap.

Not to scare you, but if it is CHF, it has to be addressed as soon as possible. Trying to wait until Sept. might not be a good idea, if he has these symptoms.

In addition, today, buy a little notebook, and start writing down all his symptoms, even if you are not sure if they are related or not. Write down the time, what he was doing, or what he can no longer do. This will give the doctor a good history of your husband's problems.

My very best wishes to your both. Things can and will get better, just be careful with him.

 

[Georgia]

Welcome, Dawn

Welcome, Dawn

Just want to welcome you to this website and ditto what everyone else has said: waiting until the 3rd may not be the best thing. There are more meds that your husband can take that will alleviate these symptoms that garlic and rest. And for an incredibly well-conditioned man to be so tired (I know he has to be since he's a Marine) simply isn't within any normal range.

My concern is that the military docs simply aren't tuned in to this kind of disease because they deal with primarily healthy people. So you may have to push a little.

I'm sorry you have all this on your plate; it's a great burden. Best of luck you all of you. Tell your hubby to hang in there. He really might be better off going back on the blood pressure meds until his 9/3 appointment. He really needs the protection.

Please stay with us; let us know what's going on. This is a good place to vent; we have a nearly endless capacity for hearing people's problems and a vast supply of advice.

 

[medtronic of borg]

Knowing a little about the millitary medical system, you should become his advocate. A little push hell...push because the information given above is right on. I t sounds like CHF. Have him STAY AWAY from the salt shaker completely!!!!!
Throw it all out . By the way garlic is a wounderful substitute for salt in it self. But I like to coat things with the spice hunters all chef's shake. I tried many of the salt subs...none thrilled me but this one.

Since they are good with medical emergency's...Try that way in the door next time he really feels like crap.

Medtronic of Borg