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. 

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. 

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 

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. 

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. 

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. 

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. 

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,

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. 

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,

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. 

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,

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.