Elaine's Guestbook

Elaine, I too have been told I need to wait and am feeling the affects almost exactly as you have described. I also work from home, I run an Etsy shop. I have moderate to severe tricuspid regurg. and mild mitral regurg, and aneurytic aortic artery which is at 4.1 as of May 11th, 2021. I also am getting frustrated with my cardiologist because I cannot get a specific answer as to when it is time for surgery. I have trouble sleeping, can only sleep on my right side at night, as it is not comfortable in any other position for an extended length of time, and am ALWAYS tired and fatigued. I have some chest pain on occassion, many more headaches than ever before in my life, as well as mild ankle swelling at end of day this past year. I used to be able to ride my bike around the neighborhood where I live in Woodstock, IL last few years, but this year when I tried, I was so exhausted just going around the block, it took me 15 minutes to just feel normal after geting home. I had a younger sister that passed away suddenly at the age of 13 (I was 18) from a ruptured anuerysm at the base of her brain. This also makes me extra anxious about all of this. I can ride my bowflex bike for 10-15 minutes and get my heart rate up to around 115-125, but anything higher than 125, and my heart is pounding hard and I am very out of breath. My daughter took me on a walk with her about a month ago, only 2.5 miles, and I felt like I wasnt going to make it. Just so hard to explain to her that I cannot walk that far without a rest now. Its not that I want OHS, its just that if surgery sooner rather than later would yield a better outcome, why wait? Especially with tricuspid, is what Ive read from medical journal articles. Even Dr. Mcarthy, who Adam Pick has interviewed many times, has said himself that it is better earlier than later with tricuspid, yet I go to this same hospital and am told to wait, it is not bad enough yet. I have also asked for a cardiac stress test, which I will be scheduling after I see the surgoen. Id like to see what other tests he reccomends before making that one, as Northwestern Bluhm Cardiovascular Institute is about 2 hours from my home. I am turning 56 tomorrow, am a single mother and my youngest son just turned 16. My oldest daughter is 35 and my other son is 31. I have a 10 year old granddaughter also. I would like to be here for them for a long time, as we have a very small family and I am my granddaughters only grandparent. Shes already lost her daddys parents and her daddy became disabled when she was 4 years old because of a tumor growing on his spine that he had to have removed, which left him with severe nerve damage. He can walk with a cane, but is in constant pain and can never run, swim, or play with her as hed love to. I need to be O.K. for them! I have now made an apt with Dr. S. Chris Malaisrie who is a cardiac surgeon at Northwestern in Chicago. I will be seeing him on Agust 9th to discuss why we are waiting as well as at exactly what point I will be considered for surgery. I too am having extreme difficulty with my quality of life at this point and need some answers sooner rather than later. You are Not alone. Please know I am here if you ever would like to talk. I will update when I see surgeon and please keep me posted when you find some answers for yourself. My family really doesnt understand what I am going through, and I do not think they can handle it when I try to update them or talk about anything having to do with my heart health. It can be extremely lonely and terrifying at times, but like Adam says... Keep on tickin". Much love and good thoughts to you! Very sincerely, Kim Eisenhut

Hello Elaine! I am a new to this group and facing mitral valve repair next week, so I don't have the depth and breadth of experience that many here do. However, I would encourage you to get a second opinion as soon as possible. I would also try and get that opinion from an experienced surgeon at a top heart surgery hospital (at first glance, in California, Kaiser patients can request a surgical referral to Stanford). There are great search tools available on this website to get you started. Please keep us posted. There is an abundance of support for you here.