Bobbi's Posts

Hi Bobbi - I also had OHS in 2015; mitral valve repair at Cleveland Clinic. Although I'm a retired RN and thought I understood most of what was involved, it turns out I was overly optimistic because I expected to feel great after surgery. Turns out that things are often more complex than we might like. Also, maybe even though our doctors explain things, they either may not go into sufficient detail or perhaps we patients aren't able to take in and really grasp everything they're saying. That may be your case too, Bobbi. I find it's necessary to really ask direct questions and keep asking until the explanations are clear and understandable. In my case, I'm feeling reasonably ok (I'm 72 now, so age is a factor). I didn't really understand that there'd be some residual heart effects due to living with mitral valve regurgitation for a long time. Finally, a new cardiologist explained in great detail how hard it is on the body to undergo OHS and also the in my case I have what he called "grade 2 diastolic dysfunction" which is the reason I tire so easily. I can do things, but for instance when I walk up even a mild hill, I had to stop and rest a bit, then can go on. Also, a very nice pulmonologist explained to me why I experience shortness of breath due to my heart being stressed particularly when I go to high altitude (I live in Colorado and love to botanize, seeing alpine plants that live above timberline - about 11,500ft here). I now have to wear oxygen when I'm at high altitude - not when I'm home in the Denver area. My long-winded point is that while it's good to be optimistic, it's important to be realistic too and that requires understanding what's going on with your body. So I'd suggest you write down questions for your doctors and make sure they give you understandable answers. Then, it's important to take that info and go on living with the best attitude possible, doing what you can and trying to accept limitations without giving in to defeat. Easier said than done, sometimes, but in the end, an informed optimism is the best path forward. I just guessing from what you said that your issues may involve both cardiac and pulmonary, but the goal is still to optimize everything and live each day the best way you can. Good luck to you!

Hi Bobbi, I got a new mitral valve in March. I had lots of edema before and after my surgery. I have lost 30 lbs of fluid in these 4 1/2 months. I am now diagnosed with diastolic heart failure. Like a form of chf. Scared me for sure. Now I know that I'll be on diuretics for the rest of my life. I'm 66. Yes, I weigh myself daily, and have found some neat, sexy compression socks!!. I also have Asthma. Yes, I still am short of breath, etc. Some days I can walk longer distances before " catching my breath" than others. Both the Asthma and HF cause that. My pulmonary Dr and cardiologist work together. Lenore has some great advice and info. Yes, we can all still learn lots about ourselves. Take care..

Thank you Lenore and Cathy for your very helpful posts... I still get tired and out of breath easily and never completely understand why. Although I do know that for a heart and body to go through OHS is an ordeal and there are definite repercussions for many. I try to appreciate all that my heart is already doing for me. Wishing you all peace as you move forward and adjust to new realities.

Thank you Lenore and Cathy. Your posts are very informative and helpful to me. I did some research on my own before having OHS but my heart doctor did not do a good job at painting a real picture. Some times I wonder if I should have held of on having the surgery. They did it sooner than later b/c I have a serious lung condition and said it would be better for my situation to have it done before it became and emergency. I'll never know if that was true or not. I was told I would be a new person after OHS, that I would have so much more energy. I do not have more energy at all. I do not get around better. I do breathe a little better now but I don't know if OHS had anything to do with that. I didn't know I would need lasix forever. I am on 3 different diuretics. I was on more but it was hurting my kidneys. Your both right about being active in asking lots of questions. I didn't know what to ask. I just trusted what I was being told, which wasn't much. I'm 43. Sometimes I feel like life isnt worth living if I am this sick but I push those thoughts away and push forward. My lung doctor doesn't know what more to do for me but offer steroids which I'm on now. My heart doctor says my lungs are causing the heart problem. I don't think I'll ever really know. I will continue to press on with Gods' help and the support I receive here. Thanks for your stories.

Kelley, I have an airconditioner finally, it helps a lot. Just hate being stuck in the house but it has to be this way on hot humid days. Cathy Zuber, Hi the edema is really rough. I am being a lot more careful to eat only fresh meat, fruit and veggies, that makes a world of difference. I suffer so much is I have processed food.Thank you both for your comments.

I'm so sorry that you have to experience so many continuing problems. No wonder you feel defeated. Mechanical valves can be replaced with new mechanical valves (just not tissue valves). Bobbi, I feel for you, and can only say that you have to take it one day at a time. And it's good to keep expressing how you feel. Your experience is unfair. At some point we acclimate to our new normal whatever that normal might be. I don't feel better than I felt before surgery, just at a new normal, and know that the future will bring both good and bad things. So I have to be in the moment, and enjoy the good things. Wishing you good moments and some peace.

We are the same age...I understand your feelings and fears. I second what Rita has shared...it's a matter of finding and accepting a new normal. It's hard, no doubt about it. My "monkey mind" takes over daily with thoughts I don't need to give my energy towards, and at 43 and remembering how we felt before surgery...well, I get it. Wishing you peace and prayers to embrace those small joyful moments.

I am so sorry Bobbi. I hope you are feeling more comfortable soon. Try a pan of ice water in front of a fan if you do not have access to air conditioning. You have a lot of health issues that are impacting your life so it is understandable to feel defeated or frustrated and worried - some days more than others. If these feelings persist I would encourage you to call your doctor. Perhaps there is a friend or counselor in your neighborhood that could help you vent - we all need that in tough times. Hoping you feel better soon, and the temperature starts cooperating.