Jen's Guestbook

Hi Jen. Welcome. You are correct, a second opinion is best AND this site is the best for education and support. I'm not ready for surgery just yet, I'm creeping along and being monitored but it's coming. I came here due to my fear of having to go through surgery feeling alone and scared. The support here is phenomenal. I also have been told my symptoms "shouldn't be" and "most likely aren't" from my Aortic Stenosis. However, it doesn't end there. A lot of times a doctor will give that one line statement and send you on your way. I've learned from past illnesses that you really need to listen to your own gut feelings and be your own advocate. And you need to find the reason for the symptoms, even if it means changing doctors a few times. So you are definitely on the right track. I am always happy when I hear that I don't need surgery yet and that my symptoms "probably aren't" from my narrowing valve but if that's the case then my answer is, "then how about we figure out what it is from". I pushed and I pushed for answers and just today found out that I am getting PVCs and Afib and that is what's causing the symptoms. I know the doctors were annoyed because I kept pushing for answers when they kept saying I shouldn't be having symptoms from my valve. But I'm a whole body, not just a valve so I just couldn't leave it at that. You see, I had a situation in 2008 when I was just 48, where a GI doctor kept treating me for Acid Reflux. Treatment consisted of one pill a day then 2 a day, then 3 and when he suggested a 4th pill for my burning stomach (not burning esophagus...but nobody wanted to listen when I said that), I decided enough was enough. I fired 3 GI's in 8 months. The doctors thought I was crazy, a nut case. All I knew was that I was getting worse by the day, couldn't eat and had a constant burning in my stomach. So I continued to fire doctors and move on to the next until one doctor DID listen. I explained that I don't need to know what the symptoms aren't, I need to know what they ARE. Finally, a diagnosis after 10 months of searching. I had Stage 2C Ovarian Cancer. Why am I telling you all of this? Simply to say that you are doing exactly what you should be doing. Going to a different Cardiologist. Get the Echo. If they can't explain your symptoms, try to find out what they are somehow. Don't let them just send you on your way without an explanation of the symptoms. Symptoms are there for a reason. They aren't from nothing. And they aren't always obvious. In my case, my burning stomach did not say to me, "hey maybe you should see a gynecologist". But after 2 surgeries and treating the Cancer, my burning stomach miraculously disappeared instantly. November 23rd will be 5 years and although I still have to keep ahead of the Cancer with lots of follow up appointments, I'm still here 5 years later. The Oncologist told me that if I went undiagnosed another 6 months, the outcome may not have been the same. So please, I say this to you, and to everyone reading this, second opinions are vital and sometimes even 3rd, 4th and 5th opinions. However many it takes to find the answer. I hope you learn all you need to when you go for your echo so your search can be over. OK...sorry for being so long winded. Being properly diagnosed is something I am just very passionate about. I'll shut up now. :-) Good luck Jen. Keep us posted. We are a caring bunch and are happy to support you. Karen Pineda

Hey Jen, Welcome to our community! My name is Adam Pick. I'm a former patient and founder of the website. I hope the people and the information here will help you! If you need anything, please let me know. Keep on tickin! Adam Pick