breathing is a good thing

 

Hi Donna,

       I can relate somewhat to your heart issues.  I have been dealing with Atrial Fibrillation these past two years and it has forced me to make some lifestyle changes in order to manage the problem.  Those, coupled with a beta-blocker have helped, but it has made me somewhat unhappy because I already made so many other changes due to the "regular" Lupus issues, that another one swept me up into depression!!  I am better now and adjusting, especially to the medication.  The Bet-blacker makes me a little dizzy and tired for about 2 hours after I take it.  That's hard on a fairly active person like myself!!  Having a sense of humor about this journey and finding common ground, like in this forum, have really helped.  It's good that you found out what is going on, but I am sure it's been a different kind of adjustment.  I am sending you warm thoughts and a ((((((((((((((((((HUG))))))))))))))))))).

Laura

Hi Laura and Joy. Laura I seem to recall that you have A fib, but regardless now you not only have my attention, but my empathy as well. It's so hard to hear that one has heart problems. Prior to lupus I was a runner for 20 years, then took up swimming. I always felt my prior exercise was what kept my lungs and heart working well even with lupus. I was very surprised the first time I had pneumonia. Well, I was surprised two months later when I came out of the resulting coma. From what I understand I didn't have much to say during those two months. I've never been on a beta-blocker, but it sounds like a real pain. Thank you so much for the warm fuzzy and hugs. Back at ya girl friend.

Joy you really must have lots of potty breaks! I take one lasik when I wake and my cardiologist told me to only take another if I become out of breath during the day. He wants to keep me from developing a tolerance if he can. Do you have difficulty breathing too, or do you have edema?

Thanks for the replies Ladies. Love, Donna

 

Hi Donna,

I'm sorry that you had to hear that your lupus has now attacked your heart. This stupid disease is just so unfair to us. (((((( hugs)))))) I wish I could say everything will be fixed and all better, but you know I can't.

I've had issues with my heart from the get go. I'm constantly battling pericarditis, and ALWAYS have a small amount of fluid collected between my heart and pericardium. I have several pericardial effusions a year and am just waiting for the day that I need a window. I've had mitral valve prolapse since I had rheumatmatic fever as a kid. I also have an extended QT interval due to one of my pain medications and finally I have a severely enlarged heart from my pulmonary hypertension.

I totally understand how you are feeling, hearing that you now have a heart condition. I'm truly sorry sweetie. I also, take lasix everyday to help with the fluid retention I have. I take Viagra three times daily for the pulmonary hypertension, and my cardiologist was mentioning that we may want to consider removing my pericardium from around my heart. I do go to pulmonary rehab twice a week, it does help some.

The best advice I can give you is to take your medication as directed, get exercise ONLY IF, your Doctor approves it. Try to eat healthy and DON'T LET THIS BEAST BEAT YOU DOWN, NEVER STOP FIGHTING!

You have my number and email if you ever need some support just reach out and I'll be there. I wish you would get better with treatment. Hang in there Donna, you went through a really hard time and pulled yourself through, you will do so again. I'm here for you and I'll send many prayers your way.

Hope you have a good weekend and please be careful and take care.

Hugs,
Barbara

Hi Robin and Barbara. Wow! What a mess all this cardiac disease can be. As usual, when I develop something new, there are always folks who have it also.

Barbara I hope you know how very proud I am of you, but at the same time I feel so badly for you. You're an inspiration for me and I'm sure everyone else who knows your story. If removing your pericardium isn't too invasive, I would give it some serious thought. I'm trying to think...is there any organ in your body that functions normally?

Robin you might just win the prize on this one. Interestingly, my cardiologist said I have left ventricular diastolic failure, not dysfunction and he gave me lots of patient literature on heart failure. Regardless of the wording, my diagnosis sounds so minor compared to all the heart problems you have.

I'm tired and going to bed. I'm sending you both my love, prayers, positive energy, and ((((HUGS))))