Wheezing upon exertion

[mom2angel]

Hi all,
I am looking to hear some of your symptoms when waiting for heart surgery. I already have an artificial mitral valve that I've had for 35 years. My new cardiologist thinks I will need it replaced someday. I am in mitral stenosis and have diastolic dysfunction. My cardio has never discussed the severity with me. For several months, I've had fatigue, shortness of breath, daily chest pains and flutters, dizziness, waking at night and sitting up, etc. life is stressful raising 2 young kids, so my symptoms might all be stress related. I have no idea and don't want to cry wolf. I had 2 episodes in a four month period where I couldn't say my words. I would try to talk and different word sounds would come out, instead of the words I was trying to say. I have no idea what that was all about. Google told me it may have been a mini stroke. In May, at the urging of my husband, I went in the get checked out. They did a CT scan on my head, which showed two spots, but ey thought the spots were old. (I had brain surgery in 2002, so the spots were likely from that.) they also did an EKG and sent me home with a clean bill of health.
This morning, I carried a storage tote from the house to e shed. It wasn't extremely heavy, but somewhat heavy. I was wheezing by the time I got across the yard to the shed. This makes me think it could all be heart related. My question is: Do any of you wheezing on exertion if you don't have asthma, heart or other problems? Thanks. I hope you all have a great weekend! Jill

 

[mom2angel]

Edit: I have only had this valve for a little under 24 years. I had a smaller one implanted in 1982, but it has since been replaced with the one I currently have. This one is a St. judes.

 

[dornole]

That sounds like a lot of symptoms for just stress. When I had mitral stenosis (mod-severe), I had shortness of breath (had to take a break halfway up the stairs), strong urge to cough when lying down and dry hacking coughing spells (had to sleep in a chair), and eventually coughing up blood. Wrote it all off to pregnancy and bronchitis and also tried an inhaler (which did nothing of course). Duh - but, didn't know I had any heart issues.

When I had "stress," post-repair (5 kids under age 5 including two 27-week preemies, another with autism, and one with selective mutism), I didn't have any of the symptoms you describe. Clinical depression yes. Those kind of symptoms, no.

When did you last see your cardiologist? Are you happy living with all those symptoms?

 

[Nocturne]

If you're asking if you should go to the doc about it -- if you do and nothing is wrong, you might look like you are overly nervous. If you DON'T go and something IS wrong, you might end up dead. Easy choice IMO.

 

[mom2angel]

Thanks to both of you for your insight and advice. Hope you both have a great day!

 

[mom2angel]

Had a great visit with my Cardiologist. He explained things to me and answered all my questions. My artificial mitral valve has been too small for several years. They have been letting it slide since I was asymptomatic. Now that I have symptoms, they are following me closer. I'll go in every 6 months instead of every year. I'll check my INR every 2 weeks instead of every month. I feel a lot better now that I have more info and know the gameplan.

 

[dornole]

That makes sense, mom2angel. Glad you got this info from your cardiologist. Hopefully, now that you're an adult you won't have to be "re-sized" after this next surgery.

 

[mom2angel]

Sent them a message yesterday to let them know how out of breath I am and that I'm sleeping on 3 pillows (unusual for me). They called back and said exercise more and build up your tolerance. I'm an active person and take lots of walks. I work a few days a week lifting heavy boxes and stocking shelves. I drive my 5 and 10 year olds around to school and activities and am active taking care of them. I'm not a sedentary person. I feel like Im not being heard by the Dr.s, but I'll follow their rules and wait to February to contact them again, when we do my next visit. In the meantime, I'm going to try to not overthink the symptoms. Hope everyone has a great week. Thanks again.

 

[dornole]

Are you sleeping on three pillows because you rise up hacking out a lung with a dry cough if you try to lie flat to sleep, by chance??? (medically termed orthopnea)

That is a CLASSIC sign of severe mitral stenosis (which you clearly have due to the too small valve) resulting in congestive heart failure and impacts on your lungs.

I had these exact same symptoms before surgery - the propped up sleeping and trouble with daily activities (I also was pretty active, used to walk 3-4 miles a day) and was also told - you're pregnant, it's asthma -- NO NO NO!!

I even said "I am coughing up blood" and got no attention until I said "I spit up bright red clots of blood the size of a quarter" at an urgent care. My OB didn't know what he was doing and we didn't know I had heart issues. I am stunned that your cardiologist is not listening to you..

I am guessing from the tone of some of your posts that you have similar issues to what I had of fearing raising a false alarm, being a bother, and a self-image of being tough and not a complainer, being a rule-follower, trusting the medical team. Screw that. You can wait if you want but I'd schedule another APPOINTMENT (not a call, those get blown off) to very specifically discuss your symptoms with their frequency and severity. Or just skip that and go for a second opinion now. Your symptoms sound pretty darn severe to me. Don't pussyfoot around. Tell them "I know my body and something is wrong."

 

[ottagal]

Hi mom2angel,
I agree with dornole. I am sorry that I can't provide you with an answer to your question. I am not sure what the protocol is for mitral valve stenosis diagnosis.
Is there another test that you could ask for that would help confirm the symptoms are mitral valve related? I know that I had a pulmonary function test to rule out Asthma when I was experiencing shortness of breath.
All the best...
Thinking of you..

 

[Eva]

I'm glad you had seen your cardio and you will follow up more frequently.
I wheeze sometimes, the doctor said I was ok! I was upset as it was annoying and I thought I was having insufficiency since I have a small leak. Then I journaled for a week what I did and ate everyday, and in my case, it was drinking milk!! Yes. But that's me! No milk now, no wheezing! When I'm tempted to retest myself, my wheel is back!

Did you tell your cardio you carry heavy boxes?! Or how heavy they are?! I'm not a doctor, but I wonder if this might affect or cause stress on your valve/heart! Just my 2-cents of thought!

Good luck and keep us posted!

 

[mom2angel]

Thanks everyone. Dornole, I am sleeping on 3 pillows, because I'm out of breath when lying on my back. Breathing seems strained. I recently lost 5 lbs because I stopped eating late at night and started watching my snacking. Also, I'm exercising a little more. I dont have a cough yet, and that's one reason I am holding off with making things sound urgent to my cardio. At 13 years old, I had the bad cough too. I was hospitalized for pneumonia, but it turned out that it wasn't pneumonia. It was just that I was ready for my new valve.
I'm hoping to lose a little more weight. ( I'm up 17 lbs from 2 1/2 years ago when I tore my meniscus in my knee. I am not overweight though.) Once I lose about 10 more pounds, I will mentally feel more ready for stressing things to my cardio. If the cough develops, I will definitely be calling him.
My husband left at 3:30 this morning for Louisiana to alligator hunt. I was up with him early. Then I decided to take a 30 min nap in the recliner before the kids woke up. I slt better in the recliner than I have in months. Tonight, I'm going to sleep there. If it works better, I'll stay in the recliner until something gets done. A good night's sleep will be great.
Eva, glad you figured out that milk was your problem. It always feels nice to figure these things out and have some peace about them.
Dornole, just read your last paragraph. I agree completely! I saw an awesome family Dr. yesterday. He listened to everything I said and let me talk for 2 hours. I was so impressed by him. He is making appts with a plastic surgeon to redo my c-section scar, and told me to get the knee done now. He was going to make a phone call about my heart, but I think we will take care of the other two issues first. So, I said let's hold up awhile. And yes, mainly because I don't want to make my cardio mad or have them make me feel like a fool. It's all been a catch 22, because I've been wanting to make sure the heart would hold up for the other two surgeries, but then I need the ab problem (scar tissue, hernia, etc) fixed so I can use my ab muscles when recovering from heart surgery, etc. but, we have a plan now. The visit with him was so helpful. This will be the year we get this all fixed and out of the way so I can have my life back. Best of luck to all of you too.

 

[dornole]

Yeah, well, if you find it hard to breathe when LYING DOWN RESTING, I really don't think more exercise is the answer! LOL. Again, BE A BOTHER. Seriously, you DO know your cardiologist gets paid every time you make an appointment, right? You know the surgeon needs to make that boat payment? ; ) I hope you get everything tuned up ASAP.

 

[mom2angel]

Thanks for all the info. I gave my update on another post, but here it is again. I called the cardiologist's office last week and was more aggressive. I basically told them something had to get done or I was going elsewhere, because my heart is saying it is time. I spoke to my old nurse, and she said she would be my advocate, even though she's not my nurse anymore. She called me the next day and said they would get me in for surgery. I have an appt. to meet with the surgeon on November 9th. We should set a date then. They are also doing an echo, CT scan and pulmonary function test next week. My surgeon will look at those results befor he meets with me. So, that is good news! So happy to be moving in the right direction. Thanks again.

 

[Eva]

Good update. Keep us posted.

 

[carolinemc]

mom2Angel, good for you, being proactive for your health. Good luck and let us know how things went. Glad you stepped up to the plate. We all have to be proactive for our heart health issues, no one will by ourselves. Keep it up, you found your voice. Hugs for today.