Mended Hearts Open Forum

Hi all! Just looking for some support from other heart people like myself. A little about my heart history: I was born with a VSD that was repaired when I was a year old. (I'm 45 now) That has left a life long heart murmur. In my 20's I was feeling off with my heart and after a couple years of hounding the doctors, I passed out at work and then they discovered I had Heart Block (Winke-bach sp?), so a pacemaker was placed. I was 29. In my mid 30's I had a full hysterectomy which lead to hormone replacement. My heart wall started thickening. About 2 weeks ago, I went to the ER to get a migraine cocktail (they only do it at the ER) for relief, mentioned I had a funny heart feeling that was making me a little breathless. They did bloodwork and an X-ray finding fluid around my heart and lungs. I was pretty much immediately hospitalized for IV lasiks for 4 days to get the fluid off. They told me I now have Congestive Heart Failure. Since being discharged, I have met with an Internest and my cardiologist. Some meds have changed, some added. I have an appt. scheduled in a month to start with the Heart Hospital's Heart Failure clinic, a subset of the heart hospital itself. I have started the low sodium diet, under 2000mg, limiting my fluid intake, and doing daily vitals. I'm finding the lifestyle/eating to be the biggest challenge, as I also have binge eating disorder. I'm finding that I'm terrified to eat anything for fear that I'll either pick wrong and go over the limit, or I feel like I have to eat next to nothing in case I have a binge in the evening. I can't tell if I'm hungry or have a stomach ache from anxiety, which I have an extensive history with. (diagnosed with Panic disorder, agoraphobia, OCD) Staying at the hospital for the 4 days was torture, as I have only ever been away from my home for 2 days with my support person. I can't even go into stores to shop and being at the hospital for that long totally freaked me out. I'm literally doing everything the Dr.'s say because I'm too agoraphobic to be away from my house again! On the plus side, at least it keeps me adhering to new stuff as much as possible. My parents are really supportive and together we are changing the way we eat, and making healthy substitutions and looking at new recipes to try. When I get anxious I pretty much throw myself into looking for recipes, information, and like here, support. Any advice is welcome! I guess I'm just looking for some connections to not feel so alone in this. Thanks!! 

Kristin S. 

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Kristin Schmidt
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Hi Kristin,

Welcome home. I do not personally have your issues, but I am a 75 year old heart attack and emergency CABGx5 survivor (8 years ago) and have a loved one that currently suffers from OCD and panic disorder. It sounds like you are doing everything you need to do from a medical heart health perspective, but it does also sound like you need more professional assistance for your mental health issues.

I don't know where you live, or what kind of mental health counseling you've received or currently receive, but there is a lot of online and telephonic psychotherapy, counseling and peer group counseling for OCD and panic disorder (and I assume agoraphobia). Please check it out as it will help not only your mental heath but, through stress reduction, your heart as well.

Please also know that we are here to help as well and as best we can, and that I am here to help as a fellow heart patient, former mental health counselor and person who has learned more about OCD and panic disorder than I ever hoped I would know.

Ira

Thanks Ira! I do have a therapist that I've been seeing for a while now working on my mental health, and I see her weekly. Also a psychiatrist to help with mental health/OCD/Anxiety meds. I know that keeping stress level down is now super important for my heart, more that ever, and am trying very hard to work on my challenges in a positive way. I have always been dealing with something for pretty much my whole life, be it a physical illness or mental, and I've learned to be my own advocate in looking for resources outside the box that will fit for me. My anxiety right now really boils down to to wanting to make all the diet and lifestyle changes perfect. But I know reality is you can't go from 0-60 immediately. It's my perfection and OCD thinking that is really getting to me with this. I have a great support team though between my family, therapist, psychiatrist, and support groups online. Thank you for your message!! I hope that you are doing well yourself! Have a great weekend 

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Kristin Schmidt
🫶🏻😊
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Original Message:
Sent: 09-05-2025 03:00
From: Ira Reid
Subject: New Here

Hi Kristin,

Welcome home. I do not personally have your issues, but I am a 75 year old heart attack and emergency CABGx5 survivor (8 years ago) and have a loved one that currently suffers from OCD and panic disorder. It sounds like you are doing everything you need to do from a medical heart health perspective, but it does also sound like you need more professional assistance for your mental health issues.

I don't know where you live, or what kind of mental health counseling you've received or currently receive, but there is a lot of online and telephonic psychotherapy, counseling and peer group counseling for OCD and panic disorder (and I assume agoraphobia). Please check it out as it will help not only your mental heath but, through stress reduction, your heart as well.

Please also know that we are here to help as well and as best we can, and that I am here to help as a fellow heart patient, former mental health counselor and person who has learned more about OCD and panic disorder than I ever hoped I would know.

Ira

Kristin,

I smiled ruefully when you first mentioned the word "perfect" when discussing lifestyle and diet because it is so typical ocd, but then was delighted when you mentioned the notion of perfection being at the core of ocd. By the way, it is not a typo that I write "ocd" in lower case. As you no doubt are aware, it is critical in defeating ocd to not treat it as deserving of respect. And "perfect" does not exist except in the sense that we all are perfect exactly as we are right now, warts and all. As you also know, "perfect" is just another intrusive thought that deserves to be ignored rather than be the subject of reassurance seeking. It is just a passing cloud in the clear sky that is you.

As to your heart health, you will get better, regardless of blips that will no doubt occur in your diet and lifestyle changes. Our lives do not require perfection. Trying is good enough. While I have very few issues with my own diet and exercise regime (I am an exercise psychotic since I was 12 and am still at 75), my big imperfection is that I live with boatloads of stress every day as a still practicing bankruptcy lawyer and litigator. But I do the best I can, in all my imperfections, to mitigate the stress through meditation and the wisdom I've gained in 75 years, that you and I and all of us are all connected and, as my teacher, Ram Dass, has said, we're all just walking each other home.

With love and peace,

Ira


Original Message:
Sent: 9/5/2025 1:24:00 PM
From: Kristin Schmidt
Subject: RE: New Here

Thanks Ira! I do have a therapist that I've been seeing for a while now working on my mental health, and I see her weekly. Also a psychiatrist to help with mental health/OCD/Anxiety meds. I know that keeping stress level down is now super important for my heart, more that ever, and am trying very hard to work on my challenges in a positive way. I have always been dealing with something for pretty much my whole life, be it a physical illness or mental, and I've learned to be my own advocate in looking for resources outside the box that will fit for me. My anxiety right now really boils down to to wanting to make all the diet and lifestyle changes perfect. But I know reality is you can't go from 0-60 immediately. It's my perfection and OCD thinking that is really getting to me with this. I have a great support team though between my family, therapist, psychiatrist, and support groups online. Thank you for your message!! I hope that you are doing well yourself! Have a great weekend 

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Kristin Schmidt
🫶🏻😊
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Hi Peter!

I've been reading about ways to flavor food w/o salt, and the adding of lime, lemon, and garlic were talked about a lot. But I haven't heard of adding rice vinegar to soups. I'll have to try that one. Thanks!! It does help that before this I never added extra salt to pretty much anything, but my down fall is processed food and fast food. I live alone and have only a make-shift kitchen so it's really hard to cook, especially for just 1. But my parents don't live but 10-15 mins. away so I've been doing cooking and meal prepping over there to bring back to my house to refrigerate or freeze. I have a fridge, a tabletop oven, and microwave. I just bought an electric cook pot (probably enough for like 3ish servings of stuff) to cook at home. It can fry meat, make soups, rice, etc. I'm looking up tons of recipes to try, and it really helps that because I go over to eat dinner with my family at least a couple times a week, that they are cooking meals that I can enjoy too, not something separate from them. It just helps to feel included I guess. :) I've been trying out some salt free seasonings and have had success with a couple. But I read that fresh herbs and spices are best so I'll probably go with that most of the time. Thanks for your advice!! I hope you have a great weekend! 

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Kristin Schmidt
🫶🏻😊
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Original Message:
Sent: 09-05-2025 12:02
From: Peter DeWeese
Subject: New Here

I'm 47 and had surgical aortic valve replacement half a year ago. Prior to that, I had edema in my lower and upper body. The edema was resolved by the surgery, but to help my blood pressure, I'm still keeping to a low sodium diet. First, I use more acids as they give me the same enjoyment, for example I add lime, lemon, or rice vinegar to soup. I add malt vinegar to fries if I were to have fries. This works for most savory foods. Then I do not add any more salt than is absolutely required for cooking. "Required" for example is that bread needs salt to control rising. Then I only add it after tasting the food, and minimally. I don't even use salted butter. This is because you mostly taste what is on the outside of food, so it doesn't require near as much. I use potassium salt to balance my sodium, especially back when I was taking diuretics which flush them. There is more to my diet but these little things help me a lot.

Kristin - Though the extent of my health problems do not compare with yours, 14-years ago, at the age of 69, I had four heart surgeries, including a bypass and valve repair, within eight months. I am not (within reason) fully active and feel terrific. I say this to encourage you to feel hopeful. I had full confidence in my cardiologist and full support from my wife, all of which contributed greatly.

One thing I can specifically address is sodium. I was a total abuser and quit all most-laden food stuffs, cold turkey. I check all labels in supermarkets. I only eat out once a week. (Restaurants are notorious salt-adders.) My wife discovered Alvarado's Bakery's "No Salt Added" bread, which even the dietician at my heart rehab facility didn't know about, and we still rely on it.

Best of luck,

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Bob] Levin
Berkeley CA
adelbob@comcast.netRobertRobert
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Original Message:
Sent: 9/5/2025 4:23:00 PM
From: Robert Levin
Subject: RE: New Here

Kristin - Though the extent of my health problems do not compare with yours, 14-years ago, at the age of 69, I had four heart surgeries, including a bypass and valve repair, within eight months. I am not (within reason) fully active and feel terrific. I say this to encourage you to feel hopeful. I had full confidence in my cardiologist and full support from my wife, all of which contributed greatly.

One thing I can specifically address is sodium. I was a total abuser and quit all most-laden food stuffs, cold turkey. I check all labels in supermarkets. I only eat out once a week. (Restaurants are notorious salt-adders.) My wife discovered Alvarado's Bakery's "No Salt Added" bread, which even the dietician at my heart rehab facility didn't know about, and we still rely on it.

Best of luck,

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Bob] Levin
Berkeley CA
adelbob@comcast.netRobertRobert
------------------------------

Hi! My children's cardiologist referred me to the adult part of the Heart Hospital in our area. I'm in MN just outside of the Twin Cities, so I originally was seen at Children's, now at the Minneapolis Heart Institute. They have different areas in their clinic for different issues. My current cardiologist just told me there is a sub section type clinic with in the MHI for just heart failure, and I'm scheduled to see them. They help with titrating meds, diet, and lifestyle changes. I'm not seeing them until the beginning of October. but I'm looking forward to it, as it will be specific with my personal situation. Thanks for your kind words!

Kristin 

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Kristin Schmidt
🫶🏻😊
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Original Message:
Sent: 09-06-2025 11:05
From: Tina Marshall
Subject: New Here

Hi Kristin!

Welcome to mended hearts.  I was born with a congenital heart defect too, Tetralogy of Fallot and ventricular septal defect (VSD) is  one of the four defects.  I had a shunt at one year old to save my life and total repair done when I was 6 years old.  I am 58 years old now.  I have a leaky pulmonary valve that will need to be changed soon and I have an arrhythmia that I take meds for. But overall, I'm doing good.  

My question/advice is:  Are you followed by an Adult Congenital Heart Clinic

 (ACHC)?  If not, I highly recommend you seek one out.  I was told to never stop going to Children's Hospital or to an ACHC.  They understand heart defects and know how to treat them and us as we age better than regular adult cardiologists.  I go every year for check ups at my local ACHC that is at the Children's Hospital in Pittsburgh. Here is the ACHC website and directory.

Clinic Directory - ACHA

https://www.achaheart.org/your-heart/resources/clinic-directory/

Our little mended hearts are different.

I hope you receive the best care and can feel better!  Praying for you!

Original Message:
Sent: 9/5/2025 4:23:00 PM
From: Robert Levin
Subject: RE: New Here

Kristin - Though the extent of my health problems do not compare with yours, 14-years ago, at the age of 69, I had four heart surgeries, including a bypass and valve repair, within eight months. I am not (within reason) fully active and feel terrific. I say this to encourage you to feel hopeful. I had full confidence in my cardiologist and full support from my wife, all of which contributed greatly.

One thing I can specifically address is sodium. I was a total abuser and quit all most-laden food stuffs, cold turkey. I check all labels in supermarkets. I only eat out once a week. (Restaurants are notorious salt-adders.) My wife discovered Alvarado's Bakery's "No Salt Added" bread, which even the dietician at my heart rehab facility didn't know about, and we still rely on it.

Best of luck,

------------------------------
Bob] Levin
Berkeley CA
adelbob@comcast.netRobertRobert
------------------------------

Thank you for your words of encouragement! I'm going cold turkey as well with the low to no sodium. They gave me the limit of 2000mg a day and so far I've been really good about staying under. The fast food is really hard to give up though. I live alone and only have a makeshift kitchen, but I'm figuring it out :) Thanks again!

Kristin

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Kristin Schmidt
🫶🏻😊
------------------------------

Original Message:
Sent: 09-05-2025 16:23
From: Robert Levin
Subject: New Here

Kristin - Though the extent of my health problems do not compare with yours, 14-years ago, at the age of 69, I had four heart surgeries, including a bypass and valve repair, within eight months. I am not (within reason) fully active and feel terrific. I say this to encourage you to feel hopeful. I had full confidence in my cardiologist and full support from my wife, all of which contributed greatly.

One thing I can specifically address is sodium. I was a total abuser and quit all most-laden food stuffs, cold turkey. I check all labels in supermarkets. I only eat out once a week. (Restaurants are notorious salt-adders.) My wife discovered Alvarado's Bakery's "No Salt Added" bread, which even the dietician at my heart rehab facility didn't know about, and we still rely on it.

Best of luck,

------------------------------
Bob] Levin
Berkeley CA
adelbob@comcast.netRobertRobert
------------------------------