Gina's Journal

Hello all.. I'm still having shortness of breath which has gotten worse and still no answers in sight. I had an angiogram which showed my heart vessels did not have any blockage. I have had a PFT test, an Immunoglobin E test which was mildly high and a bronchial challenge test to determine if I had airway disease which turned out negative. My pulmonologist can't figure out why I'm having these issues. I can't walk and have a conversation at the same time because I sound and feel like I ran up a flight of stairs. My last echo showed mild AS and no need to replace valve until my 60's. My pulmonologist has me on an asthma regimen medication for three weeks to see if it helps. I'm scheduled to have a walking test and a cardiopulmonary bike test to see if possibly anything was missed in relation to my valve. Has anyone experienced this? Breathless and tired

Hello, First off... I’m so grateful for this community, it helps me realize I’m not alone in my confusion and journey. It has been 4 years since my last update... I have moderate AS. When I was first officially diagnosed in 2014 my cardiologist told me I could climb Mt. Everest.. prior to that there was confusion on what my actual diagnosis was... two years ago my cardiologist said I have the valve of a 70 year old and would probably need my valve replaced in my early 50’s.. then last year said maybe late 50’s... I have been on and off on asthma medicine due to shortness of breath and chest tightness on and off for the last 4 years... now I’m back on regular asthma inhalers meds twice a day and using my rescue inhaler as needed. I can’t do a simple hike or do high impact exercise without my heart rate spiking from 115 to 150 within minutes and have to stop because I feel like my heart is going to jump out of my chest... my primary care first thought it was cardiac related.. but thought about it and thinks it’s the exercise, heat is exacerbating my asthma but wants me to be cleared by cardiology first. Oh and also prior to this was having chest tightness and feeling like someone was in my chest squeezing my heart, only lasts for a few seconds but was happening every day for four days straight (this by the way was new sensation/symptom). I was at the ER last week, due to weird front neck pain, sweating and nausea... no chest tightness though. Stress echo done and all was good.. still waiting to see my cardiologist for follow up as per my primary care doc.. I’m now being referred to a pulmonologist and have to get a pulmonary function test done.. my next echo is in October.. I work in a hospital and one of my friend (doctor) informed me my symptoms don’t sound right with the high impact exercise and hiking. I’m not a smoker, never have been.. mildly overweight could lose 15 pounds.. I was reading my first visit with my pulmonologist and he indicated shortness of breath not related to lungs but rather diastolic dysfunction.. I however don’t see this in any of my cardiac medical records.. my concern is being prescribed inhalers and possibly covering up another issue that may exist.. I’m also very fatigued after coming home from work.. fall asleep for at least 2 hours before I go to bed, is it just because I’m stressed??? And my boyfriend has COPD2 and can do a hike without batting an eye.. I also go to the gym, treadmill 3x a week for 30 min and do fine...am I overthinking this?? Should I just accept my new reality?? Any advice would be appreciated Really confused — asthma or heart or both Gina

I wanted to thank all of you for your comments and support! It helps and is very encouraging to know that I'm not alone in this, I will keep you posted!! Take Care, Gina

Hi...I'm a newbie here...Here's my story, I'm 43years old, I was diagnosed in 10/2014 with Mild AS (due to bicuspid valve) and moderate AR. I have always had a heart murmur, but never told to see cardio. I told my PCP I had fainting spells in my 20's and in my 30's had symptoms of a stroke went to the ER, but thankfully it was ruled out as stress, that's when my PCP referred me to a cardiologist. I started to have chest tightness and shortness of breath at exertion, but my cardiologist told me not related to AS and won't need a valve replacement until I'm in my 60's. My shortness of breath was getting worse, went to urgent care requesting an inhaler thinking it was allergies (had asthma due to allergies about 7 years ago), denied an inhaler due to the AS referred back to cardiologist. I had a second echo done 4/2015 and saw my cardiologist again and once again told me not related to my AS. My PCP, prescribed cingulair and Flonase and a rescue inhaler just in case, but stated that although I had allergies my lungs were clear. I saw the pulmonogist and had a Pulmonary function test done, he also said my lungs were clear and one area of my test was slightly below normal, he prescribed Flovent to use twice a day along with Cingulair. I have been on cingulair for two months and the Flovent almost a month now and there have been significant improvement with my breathing. There were moments I still had Shortness of breath when exerting myself or exercising, but definitely not as bad as it has been. I went to get a second opinion by another cardiologist and also was told not related to my heart and could have adult on set asthma. I had stress echo test done this past Friday, will find out results on Wednesday of this week. The cardiologist that was there when I did my stress echo asked me what the AS number was, I didn't know what that mean, because I was never told, when he asked the tech, she told him 1 and it was mild. Both cardiolgists told me I have no restrictions and can push myself, meanwhile my PCP told me to only do minutes on the treadmill and not to push myself. And my pulmonologist doesn't think I have asthma but for the moment is going along with a diagnosis "mild asthma" but wants me to follow up after I get the results of the stress echo. I have been very confused and given mixed signals, the last thing I want to think about or want is surgery. Any thoughts? Misguided and confused, GP