While were on the subject of SOB

[kfredva1]

Hi All,

While the subject of shortness of breath was brought up in another post, does anyone know if SOB is a good indication of worsening AS/AR? I know I post very little but a little run down, currently in waiting room at 1 cm (aortic stenosis) with mild regurge. I have been diagnosed with asthma 2 years ago.. funny i never had it before now (age 41). Seeing spec. for it but breathing is getting worse, not better no matter the medications I'm on. Not wishing for surgery just yet either, but would love some relief. I go back to Cardio next month for 6 month check up... will he take me seriously or brush me off to the pulmonary doc? Would love to hear you guys imput on this.

Thanks,
Kathy

 

[Julian]

Hi All,

While the subject of shortness of breath was brought up in another post, does anyone know if SOB is a good indication of worsening AS/AR? I know I post very little but a little run down, currently in waiting room at 1 cm (aortic stenosis) with mild regurge. I have been diagnosed with asthma 2 years ago.. funny i never had it before now (age 41). Seeing spec. for it but breathing is getting worse, not better no matter the medications I'm on. Not wishing for surgery just yet either, but would love some relief. I go back to Cardio next month for 6 month check up... will he take me seriously or brush me off to the pulmonary doc? Would love to hear you guys imput on this.

Thanks,
Kathy

In my experience, YES! Its not uncommon that some doctors dismiss symptoms of SOB as everything else and not heart related. For example, cardios will look at a measurement of 1.0cm and than ask you, "how do you feel". If you say that you feel great then most likely the cardio will say, "okay, see you in 6 months." If you say that you feel SOB, increasing fatigue ect., He/She will/should begin to take you more seriously, "okay, lets do an angiogram, lets do a TEE, lets do a stress test. Echos can be off in my experience, for two years I was between 1.0 and .7 depending on who did the echo and what doctor read it. Either way I was feeling symptoms and I was making excuses of what the symptoms could be, GERD, asthma, cancer, getting older (I'm 28), depression, anxiety, witch doctor curse, the economy... LOL!

Timing of surgery is a personal thing, but it also is rolling the dice, a measurement of 1.0cm is a big deal, we have some people on here that stayed at this measurement for 10 years... Good for them, but this may not be you or me, if you feel symptoms its better to get the surgery done ASAP versus waiting 1-3 years trying to buy time.

 

[DanielB]

Though I am dealing with aortic reguritation, not stenosis, my story may be helpful. In May of 2010 I was diagnosed with moderate-severe AR with an enlarged aorta with no symtoms, so they told me '4-6' years before I would need a replacement valve, but they would check me out every six months. Six months later, all good, stable echo, feeling fine. A couple months later, starting getting SOB when doing minor physical tasks, some chest congestion and feeling tired a lot. So, at my one year check, I went in ready to make my case for surgery as I was 'tired of being tired'. Turns out, my echo was still stable, with some 'minor' heart enlargement, but, after hearing me out on my symptoms my Cardio told me that, though my echo showed little changes from before, with the symtoms I had we could treat with meds to see if it made me feel better or move towards surgery (I may have actually used the term 'tired of being tired' with my best 'pity me look'). I am opting for surgery in October. Had I gone in and said 'I feel normal or 'okay' as I told them six moths before with the similar echo results, I would have been passed off another six months for sure. So, you see how much different a visit to your cardio can go depending on a number of things and the cardio you are seeing. I really believe determining just where people are on valve deterioration is as much an art as a science for cardiologists. FYI - they are still treating some chest congestion I have had since last December, but they don't feel that it's heart related. I would beg to differ, never felt like this before, but, since I'm cleared for surgery, I'm good with that. If you're uncomfortable with your diagnosis and the wait, you might want to consider a second opinion for peace of mind.

Lastly, to answer your question dircetly, I am told every time I see my GP or Cardio to report any shortness of breath, especially lying down, and/or swollen ankles to them immediately.

Dan

 

[kfredva1]

Thank you Dan and Julian, the Shortness of breath indeed got worse over the weekend, was in the NP's office for a breathing treatment this morning. It's not that its hard to catcha breath, just give out of it trying to speak. My company I work for provides a free NP 2x a week for employees and thier family members, so I usually go to her for smaller issues. I asked for copies of my medical recaords while I was there, i have been seen 6 times this yr for sinus, allergy, asthma, breathing problems. i hope with a compilation of some hard core data, they will take me seriously. Thanks to all of you, this site has educated me far more than anywhere else.
Kathy

 

[Bina]

My primary problem with stenosis was the SOB, but I didn't recognize it as such since it crept up on me over a few
years and I didn't even know what it was like to breathe normally anymore. Finally I had a heart cath/angiogram that
showed I was in trouble with an AVA of .8 cm Surgery was a few weeks later.
After surgery it was shocking how easy it was to take in a full breath of air.

 

[rubywhistle]

When I said I had problems breathing - they asked me if I was SOB when moving or still - I said i woke up often gasping - this seemed like a bad thing as I was sent for more tests. I have never had trouble breathing though - I think it depends if you are also feeling 'dull' and tired too. But best advice I got was to listen to my body and translate it to the drs cause if they dont know then they dont know. Dont be afraid to complain! Better to tell them and be on the safe side.