The problem with Heart diseases is that nobody can see what's happening to you on a daily basis.
It's not like if we feel pain we're suddenly covered in a ...Read more
The problem with Heart diseases is that nobody can see what's happening to you on a daily basis.
It's not like if we feel pain we're suddenly covered in a rash for example so everyone can tell something is wrong straight away.
Because of this I find it hard to tell others how I feel as it seems awkward to mention it? And I don't want to come across moany or dramatic. ..or even random. I am often at work or with friends and feel an aching pain around my chest area or suddenly feel drained and lethargic but they don't know. I just carry on trying to act like everything is fine.
But everything is not fine. I'm exhausted and pretending everything is ok just feels like too much effort these days.
Sorry for the moan. But this is how I honestly feel and writing it down is easier then saying it aloud I guess.
Seri, Welcome to the site. I can honestly say your post brought tears to my eyes. I know exactly ho ... Read more
Seri, Welcome to the site. I can honestly say your post brought tears to my eyes. I know exactly how you are feeling. I deal with the same feelings. I sometimes feel that people don't believe me when I say I feel drained and tired and full of fatigue, physically and mentally. They just say, "hmmm, but you look good". Well that's a good thing because I try to look well. I don't want to look sick. It's very frustrating though. I can't always keep up with what other people expect from me and it gets very lonely because they want me to accommodate them but nobody is willing to accommodate me. It's either you do things as they expect or they leave you sitting alone. Like if you can't keep up then nobody wants to be bothered. It's sad. Thanks for your post. - Karen Pineda
Olga Landry Hello Seri, I know exactly what you mean. I was also felt scared and alone when I I first found o ... Read more
Olga Landry Hello Seri, I know exactly what you mean. I was also felt scared and alone when I I first found out I was going to have surgery.
I am also feeling tired a lot as well.
I remember the cardioligist asking me if I was feeling tired alot. I said yes but I just thought it where I live, My work and weight till he told me yes they all might be right but did you think it might be your heart.
I am really grateful where I work they all are understanding of my heart promblems. The only thing I don't like is being reminded of my heart promblems. I am going for surgery on Sept 30th.
What kind of heart promblems do you have? I have Tetrology of falot,
I have to get my Pulomary vavle replace,
Hope yo hear from you again. Olga
Colette McDiarmid Hi Seri,
I know exactly how you feel. It is a very tough go this waiting game. I have had my surger ... Read more
Colette McDiarmid Hi Seri,
I know exactly how you feel. It is a very tough go this waiting game. I have had my surgery now 3 months ago and even though it is a slow recovery I do notice how much better I am feeling now. Prior to surgery the keeping up appearances at work was tough and left me with no energy for home life. Hopefully you will get some answers soon and maybe surgery. Chin up... your not moaning your just telling it like it is. This is a great website for venting and support from people who are walking in your shoes. All the best.Colette
Seri Abegunde Karen, Olga and Colette I cannot even explain in words how wonderful it is to here from people who fe ... Read more
Seri Abegunde Karen, Olga and Colette I cannot even explain in words how wonderful it is to here from people who feel exactly like I do and completely understand what I mean. To be honest I've never written online before and didn't know what to expect but you have all made my day. Karen I'm exactly like you I hate looking "how I feel" so I always make sure I put in effortwevery day to look gpod and often I've had people on shock when I tell them I have heart disease because I'm such a bubbly person and look "too young" to have it. Olga I also have Tetralogy of fallot! I was born with it. At 5yrs old
I had total repair with a monoscup homograft. In 2012 I had an
Ablation for Artrial Tachycardia.
My right ventricle and pulmonary
artery is moderately tight and
moderate to severely leaking but
my heart is "coping well".
It feels like it's been a waiting game for years To see when the "right time" for the homograft to be
replaced will be. I recently had a few tests as I have felt that I am not coping as well as I use to and they have said I need further ablation and after this I am to do an exercise test and the results from that will decide if it is now time to replace the homofmgraft.
Seri Abegunde Colett although it's slow I'm so glad you are recovering well and starting to feel better. What surg ... Read more
Seri Abegunde Colett although it's slow I'm so glad you are recovering well and starting to feel better. What surgery did you have?
Michael Meyer Seri:
I found it helpful to share some details with both my boss and a few "trusted" employees. I st ... Read more
Michael Meyer Seri:
I found it helpful to share some details with both my boss and a few "trusted" employees. I still tried to function regularly on a daily basis and did not let all other employees know as I was scheduling appointments and dealing with physician offices, short term disability insurance, etc.. Eventually people will know you need a medical leave because you have to leave :).
I found it somewhat comforting that some people in the building knew. Several of my supervisors also asked how they could help which was encouraging. I never asked for additional assistance, but it helped me understand that at least based on appearances they were in my corner.
Seri Abegunde Hi Michael. Thank you for your message. I have yet to tell my boss that I need to have another ablati ... Read more
Seri Abegunde Hi Michael. Thank you for your message. I have yet to tell my boss that I need to have another ablation let alone the possibility of then having the valve replacement. I spoke to a colleague who I am quite close to and she said it might be better to actually get the op date and then tell him so that at least he has a clear idea of when I will be out of work. Ny work are generally very understanding and supportive when I'm ill. I think I put a lot of pressure on myself to try and act "normal" because I don't want to feel lkea burden to others . Plus my job is go, go, go so (working in a school) so when I'm not feeling great there never seems like a right time to tell someone so I just keep going until I burn out and end up missing a couple of days of work!
Colette McDiarmid Hi Seri, I had mitral valve surgery and they were able to save my valve and install a ring around the ... Read more
Colette McDiarmid Hi Seri, I had mitral valve surgery and they were able to save my valve and install a ring around the opening. A hole between the atriums was also found and repaired during surgery. This is after a year of having the ejection fraction at 30% due to a flu bug. The medicine brought the muscle up to 50% but by that time the valve needed repair. I have had to only deal with this for about two years so I really feel for you as this seems to have been going on for you for a really long time.
I am also feeling tired a lot as well.
I remember the cardioligist asking me if I was feeling tired alot. I said yes but I just thought it where I live, My work and weight till he told me yes they all might be right but did you think it might be your heart.
I am really grateful where I work they all are understanding of my heart promblems. The only thing I don't like is being reminded of my heart promblems. I am going for surgery on Sept 30th.
What kind of heart promblems do you have? I have Tetrology of falot,
I have to get my Pulomary vavle replace,
Hope yo hear from you again. Olga
I know exactly how you feel. It is a very tough go this waiting game. I have had my surger ... Read more
I know exactly how you feel. It is a very tough go this waiting game. I have had my surgery now 3 months ago and even though it is a slow recovery I do notice how much better I am feeling now. Prior to surgery the keeping up appearances at work was tough and left me with no energy for home life. Hopefully you will get some answers soon and maybe surgery. Chin up... your not moaning your just telling it like it is. This is a great website for venting and support from people who are walking in your shoes. All the best.Colette
I had total repair with a monoscup homograft. In 2012 I had an
Ablation for Artrial Tachycardia.
My right ventricle and pulmonary
artery is moderately tight and
moderate to severely leaking but
my heart is "coping well".
It feels like it's been a waiting game for years To see when the "right time" for the homograft to be
replaced will be. I recently had a few tests as I have felt that I am not coping as well as I use to and they have said I need further ablation and after this I am to do an exercise test and the results from that will decide if it is now time to replace the homofmgraft.
I found it helpful to share some details with both my boss and a few "trusted" employees. I st ... Read more
I found it helpful to share some details with both my boss and a few "trusted" employees. I still tried to function regularly on a daily basis and did not let all other employees know as I was scheduling appointments and dealing with physician offices, short term disability insurance, etc.. Eventually people will know you need a medical leave because you have to leave :).
I found it somewhat comforting that some people in the building knew. Several of my supervisors also asked how they could help which was encouraging. I never asked for additional assistance, but it helped me understand that at least based on appearances they were in my corner.