Kathryn's Journal

Terrie Syvertsen  Kathryn-Glad to see your post but sorry you are having other medical issues and hope things are progressing after your surgery(Feb)to get better.
Bless you too.

  Wow Kathryn, so even though your valve is not too narrow and your ejection fraction is good, will the ventricular dysfunction and hypertrophy, although mild,be a consideration for surgery? My cardiologist tells me that when that starts, I will then be ready for surgery. But my valve is pretty narrow, so I am wondering what the doctor has suggested for you.

Kathryn Waymire  Thank you this is why I posted. To see if I should be seeking Cleveland clinic soon. I don't see my cardiologist for 6 months. I am noticing more sluggishness? I have a new problem with my left broccoli tightening and needing more inhaler treatment. This is new for me as well. I can't help but think it's all connected. I am changing my eating habits, and watching my blood pressure close but I don't want the docs to wait to long me be in worse trouble.

Kathryn Waymire  Doctor hasn't said anything because I saw his PA and he brought my attention to the ventricular issue. But said nothing else. I didn't have the report in front of me yet to post here until now.

  Kathryn, I don't think it would hurt to get another opinion. I understand the frustration of getting unclear answers from doctors. And the confusion surrounding such. As my aortic valve continues to get more narrow and I continue to be told it's not time for surgery, it was quite confusing as to WHEN will it be. No matter what I tried to find out, I was told it's time when my heart starts to show signs of trouble or if I show symptoms determined to be from the aortic stenosis. Well, I have asthma, I get short of breath. I have thyroid and liver disease and I'm a survivor of Ovarian Cancer so I suffer from fatigue, brain fog, palpitations, afib and at times, lightheadedness. So how does one know if these symptoms are or are not from the aortic stenosis? So I ask what then are we waiting to see before I will need surgery. I passed my nuclear stress test with flying colors so therefore my heart is fine? But my A.S. is moderate severe at 0.08 cm. I left my job because it was too much to keep up with. I'm 53 and out of work and I continue to spin in circles for a remedy. Some of what they told me was if my left ventricle starts to enlarge, then that would be a sign that surgery would be necessary. If the left ventricle pressure increases, then THAT would be a reason. Fainting could be another indication. So your test results with left ventricular issues baffle me. Have you seen the video of Adam's most recent webinar? It covers the timing of surgery and how to know when it's time. If not, why don't you give it a look and then see if either your current doctor or another doctor can advise you with a little more information as to why waiting another 6 months to follow up is suggested. It may be fine but perhaps doctors need to understand that patients need to know the reason why it would be fine to wait to do nothing now and just follow up in 6 months. I've been dancing this dance since 2011 until finally I'm told my hear function is fine so that's why we wait. But it would have been nice to know that 3 years ago. They give so little information. If they would just explain it a little, we might feel better. Otherwise, we exhaust ourselves running from place to place trying to find answers and quite honestly, I think 50% of my fatigue and brain fog comes from the constant battle of just trying to get answers in the little more than 3.25 minutes of their time that they give and the stress and anxiety it all creates.

Good luck Kathryn. Let us know how you make out. I'll keep you in my thoughts.

Kathryn Waymire  Thank You. I emailed the Cleveland Clinic with the results to see if I can or should see Dr William Steward cardiologist . Couple of people on here suggested him as a start to getting into their system.

Tammy Pilcher  Yay, your valve is not narrowing. Great news! Maybe it is just the meds and they can fix that. Best wishes, Kathryn.

Michael Meyer  Kathryn:
Dr. Curtis Rimmerman was my entry cardiologist and was very helpful. I found his book was also excellent. You may be able to find it in your library system. I have attached a link. I think it is must read for dealing with your cardiologist. http://books.google.com/books/about/The_Cleveland_Clinic_Guide_to_Speaking_w.html?id=nsdpPgAACAAJ

Suzanne Kosakowski  Kathryn I can not say enough good things about Dr. William Stewart. At CC. I went to him for a second opinion because I saw on his video the his speciality was determining when it's time to have surgery. He was amazing. He spent the better part of the day talking with me and my husband, scheduling tests, reviewing test result. The whole thing ran smooth as silk. At the end of the day he talked to both of us about the need to get my surgery done sooner rather than later because he found an aortic anurism that. My hometown doctor never mentioned. My husband commented that he never saw a doctor pay so much attention to detail as dr Stewart. And his office was so efficient whe I agreed to have the surgery (aortic root, aortic valve, ascending aorta and arch all replaced.) he even scheduled my surgery with one of the two doctors I asked about. Surgeon Dr Eric Roselli was also amazing. Everything went perfectly. The staff at CC commented that I had picked the best cardiologist of them all.

Jeff V.  I totally agree with Suzanne's comments on Dr. Wm. Stewart. He's been a staff cardiologist in Cleveland for over 30 years and has to be one of the best around. I have been seeing him for five years and always leave thinking how lucky I am to have him on my team.

Kathryn Waymire  Thank you all so much. Yes, I am worried that I may need surgery sooner. My family doctor is the one who makes comments like you have to watch this valve it can change fast . So when I don't have anything done for test in 18 month I knew something is wrong. .

Suzanne Kosakowski  And I just wan to add that the entire experience at CC was amazing. I hope you will be going there as well. Jeff V. I was told I would have to stay in Cleveland a few days after surgery, however things went so well they said I could go directly home. I drove 10 hours to NJ on the day of my discharge with no problems (of course we stopped every hour and a half to get out and walk around to prevent clots.)

Tammy Pilcher  Joseph is right, Kathryn. Trust your heart. You need to feel confident in your doctors and if you don't, find a new one. You will feel much better then.

  Good luck Kathryn. I know what those palpitations are like. Sometimes they become unnerving. I also have my share of brain fog but I attribute that to the mental overload that comes with trying to keep up with and ahead of things. But it can also be lack of oxygen. I have not had surgery yet either. I'm told it's not time yet. I get rechecked in February unless symptoms get worse before then. I went through the nuclear stress test, echo, holter monitor already so now I wait. Good luck to you this week. Keep us all posted.

Meredith Bray  In the 6 months prior to my surgery, my memory suffered also. I made sure I always had a paper & pen with me, so if someone told me something important, I wrote it down, sometimes even right in front of them. I took a few weeks after surgery to get the fog out of my head, but my steel-trap mind is back, among other happy results :)