Mended Hearts Open Forum

Hi, my name is Cas. I am 49. Last month I had a STV episode and after all the testing found out I have a 4cm ascending aorta aneurysm. After my echo found out about the diastolic dysfunction. Have been put on meds and told what and not to do. Even though they say the chances of it rupturing at this size are slim. It most doesn't help my anxiety. I try to stay busy, but it always finds it way back in especially at night. I'm afraid to sneeze, cough, bend over, etc. And the intimacy with my husband has definitely changed.
I went from a very active person to someone that I don't recognize. 
I'm sorry I'm babbling, it's just that everyone I try to talk to about this always says. "Everything is going to be alright"  They are all supportive and I totally appreciate them. They just don't understand the fear I live with ever day. Thank for listening ✌️❤️

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Cassie Finley
Wife, Mom, Nani
Family
Midland TX
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Cas,

My cardiac problems are different from yours, but I totally understand your anxiety, especially so soon after your diagnosis. It has taken me about a year to come to terms with the reality of heart failure, only to be confounded by the diagnosis of COPD. Things that have helped me adjust include connecting with other heart patients on Mended Hearts, a counseling program, journaling, and getting out of the house (though limited by pandemic precautions) to be with friends.

Hang in there!

Jean

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Jean McMillan
TN
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Cassie,
I DO understand your fear and anxiety. 
I had an aortic stenosis and after 3 OH surgeries in my teens during the 70's I lived in anxiety. 
What would happen to my heart? After the last OH, the prosthetic aortic valve I have now is still going strong after 42 years. I am 63 now and fairly fit, but many times I feel anxious about it.
Counseling is something I highly recommend. 
It helped me tremendously. 
I have learned process these thoughts. But I have a few questions,  if you dont mind.

Is surgery for repair an option?
Have you gotten another opinion?

Cassie. Whatever it takes to either get the reassurance you need and DESERVE 
I say go for it.
This site Is also so helpful. 
Sharing your thoughts, like you did here is helpful to us all.
And you know,  I wonder if YOU  have the option for surgery. Take my word,  surgery like this is so so advanced in cardiac care
Remember I had my surgeries pretty cell phones, pre computer s and pre just about everything....imagine an EKG machine the size of a desktop!
Please keep in touch, and acquire the assistance you deserve 

Peace. 
Ken

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ken levine
volunteer, retired
802-236-8186
kenpaullevine@gmail.com
Middlebury, Vermont
05753
United States of America
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Original Message:
Sent: 06-13-2020 07:45
From: Jean McMillan
Subject: Ascending aorta and aortic root aneurysm/ diastolic dysfunction

Cas,

My cardiac problems are different from yours, but I totally understand your anxiety, especially so soon after your diagnosis. It has taken me about a year to come to terms with the reality of heart failure, only to be confounded by the diagnosis of COPD. Things that have helped me adjust include connecting with other heart patients on Mended Hearts, a counseling program, journaling, and getting out of the house (though limited by pandemic precautions) to be with friends.

Hang in there!

Jean

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Jean McMillan
TN
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Hi Cassie. After my OHS 2 yrs ago I was scared to do normal activities for about a year. I always felt like I could go anytime if I wasn't careful. I'm so glad you joined this group to talk about your feelings. Talking to all these people helped me change the way I was feeling. You take the information that feels good to and leave the rest. It's not easy living with the news you received. It's a shock until you really accept it. Read about your diagnose and your meds and get as much info as you can. The more you're in the know the easier it will be for you to keep on living. Prayers

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[Carrie] [Kashani]
Parapro
ISD
[White Bear Lake [MN]
Carrie
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Carrie,
I was diagnosed with Paroxysmal supraventricular tachycardia (PSVT) about twenty years before I required open heart surgery. This is a occasional (paroxysmal) rapid heart beat that was treated with two types of medication. One was a daily medication to control my heart rate and the second was a fast reacting medication in case I exercised too much or over stressed by body.
You have several advantages over other patients with an ascending aortic aneurysm. First, you are a relatively young woman to be diagnosed with ascending aortic aneurysm. Second, the SVT, a type of abnormal heart rhythm, or arrhythmia, was the early warning which brought you to a cardiologist for treatment.  Third, you're taking heart rhythm medications to control the SVT. 
One final suggestion; since your cardiologist is your advocate, you must have compete confidence in him or her, should you need future treatment. Verify that your cardiologist has the skills and an excellent reputation at your local medical center. If not, you should chose a different cardiologist.
All the best,
Vic

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Victor Fabry, CEO
Greylock Advisors, LLC
Short Hills, New Jersey
fvfabry@gmail.com
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Hi Cas,
I had a 5cm AAA at the time of my surgery almost a year ago. I was 38 and very active so I had to make some significant lifestyle changes. I was told to just take it easy with no heavy lifting or overly strenuous activity until I had my surgery so I understand what you're going through. A lot of us have been there! Talking with my Dr's helped reassure me that I would be ok both pre and post surgery. I didn't find this group until well after my surgery but I'm sure it would have helped me tremendously had I known about MH earlier.
This may sound like a strange way to deal with the fear of "impending doom" but I sort of had to give in to it. I realized that I was wasting my days worrying about all of the "what ifs." I finally came to the realization that I was missing out on life. If the worst was to happen tomorrow, how would I want to live today? Would I want to spend my time worrying or enjoying who and what is important to me? I still can get caught up in the what ifs and have to remind myself of this. For me it is a daily, sometimes hourly exercise. One day at a time. This is simply what I have found to help me.
My advice would be to look to your Drs for medical advice and follow it and lean on your friends, family, and this community for support.
Hang in there!


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Cole Morrison
772-215-1621
Saint Simons Island, GA
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Hi Cassie, I was diagnosed with a 4.1 ascending aortic aneurysm at age 49 as well (about 18 months ago). This waiting game is hard and I understand your anxieties. Nighttime is difficult for me, too. Please know that you are not alone in this.

Leah

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Leah Rehberg
Creative Consultant/Owner
Deer Mountain Media
Three Lakes WI
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Hello my name is Bill I have a 4.0 aneurysm with diastolic dysfunction stage 3 (c) I’m scared because I don’t know what is going to happen next I have had Chronic diastolic dysfunction for going on three years now


Bill Platten
575 W. Cambridge St.
Alliance, Ohio 44601
330-581-3323
Bill5656@icloud.com
Wplatten1@gmail.com

Sent from my iPhone


Original Message:
Sent: 6/15/2020 5:36:00 PM
From: Leah Rehberg
Subject: RE: Ascending aorta and aortic root aneurysm/ diastolic dysfunction

Hi Cassie, I was diagnosed with a 4.1 ascending aortic aneurysm at age 49 as well (about 18 months ago). This waiting game is hard and I understand your anxieties. Nighttime is difficult for me, too. Please know that you are not alone in this.

Leah

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Leah Rehberg
Creative Consultant/Owner
Deer Mountain Media
Three Lakes WI
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Original Message:
Sent: 6/15/2020 6:19:00 PM
From: William Platten
Subject: RE: Ascending aorta and aortic root aneurysm/ diastolic dysfunction

Hello my name is Bill I have a 4.0 aneurysm with diastolic dysfunction stage 3 (c) I’m scared because I don’t know what is going to happen next I have had Chronic diastolic dysfunction for going on three years now


Bill Platten
575 W. Cambridge St.
Alliance, Ohio 44601
330-581-3323
Bill5656@icloud.com
Wplatten1@gmail.com

Sent from my iPhone