Jessica's Posts

Hi Friends! It's been a little while since I last logged on, the site is looking great! Today I am currently 2 years and 4 months post Aortic Valve Replacement via Ross and 1 year and 4 months post Transcath Pulmonary Valve Replacement. I had an echo this morning and my DR posted my results already and I am feeling quite stuck. Let me explain..back in July of 2018 I started to feel tired all the time again, and my palpation's were out of control. I was exercising at home one day (yoga) and when I came up from down dog to forward fold to reverse swan dive, I started seeing spots and caught myself before I fell over. I figured something was up at that point. So, I scheduled an appointment with my cardiologist and he did an echo. Then an MRI... then after the the MRI he was like "we need to re-valve the pulmonary valve asap"... SO, I was like alright, here we go again. I let my employer know that this was going to happen and that I would need the time off and they were completely understanding and okay with it. Fast forward a week or 2 later, Dr calls back and says.. "Lets do a trans-esophageal echo before we do this". I do the TEE and I don't hear back for a solid 2 weeks. Results from that were that they have identified that the stented valve in my pulmonary position has a leaflet that does not work properly... but that since all my numbers look "good" and that I was stable they did not need to take any action. Meanwhile, I still feel so much pressure in my chest, I can barley breathe, I can barely work out without blacking out and yet I am supposed to be loosing weight...because he wants to prove that my weight has nothing to do with my problem... So he tells me that I need to shed some pounds before they will do anything, which is very upsetting to hear. I mean he's been telling me this for awhile idk it struck a nerve this time. So what choice did I have? I started dieting and working out more, (even though I am limited to what I can do...walk and stationary bike pretty much). I lost about 15 pounds all together in the last 4 months which I am pretty proud of considering my situation. Got married in Oct, and now I am prepping for my honeymoon in Hawaii (yay) next month. Which brings me to last week. I called early Jan to check in to tell them "Hey I lost weight" do something about this situation now... Dr was super proud of my success but wants me to lose more of course because it is never enough. I asked him what I can and cannot do while I'm in Hawaii, just to be safe and he gave me my list of things not to do aka "don't get pregnant anytime soon", "don't go scuba diving", "don't go hiking", "don't do any intense snorkeling"...sweet. awesome. great. Then he ordered an echo, which I had done this morning. He posted the results and pretty much stated that nothing has changed, I am still stable and they still don't want to do anything about it because I am stable. This is the part that upsets me the most. I am literally telling him I DO NOT FEEL OKAY. HELP ME FEEL BETTER. I WANT TO BREATHE NORMALLY. I DO NOT WANT TO FEEL LIKE MY HEART WILL BURST OUT OF MY CHEST EVERY-TIME I MOVE MY BODY. I just don't know what to do, and it bothers me that they do not treat patients that are very symptomatic but they have numbers that are "stable"...Why do I have to be suffering severely before they will treat me...This is why I am feeling stuck lately. Stuck in the middle of the spectrum. Thank you for listening.