Bobbi's Journal

Lenore Mitchell  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!

Cathy Zuber  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..

Rita Savelis  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.

Bobbi Rockey  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 Turnbull  The heat makes breathing so difficult. Is someone able to pickup an air conditioning unit for you or rent one? We've had extreme heat and with the humidity I haven't gone outside except for appointments

Cathy Zuber  Hi, just learning how to get by with the edema myself. Unexpected by me after mitral valve replacement. I'm on diuretics, also, so I have blood tests for kidney function, also. I don't work outside in my flowers in the heat..I used to. Hang in there..you're not alone.

Bobbi Rockey  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.

  The heat is very difficult. Definitely staying away from salt helps. Even if I overdo on salt when it's only 20 out I can't breathe. Air conditioning is beautiful thing

Gerald Poulton  I dont think that is correct at all, they can replace it I am sure. ask someone that knows but it makes no sense at all.

Rita Savelis  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.

Shannon Gray  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.

Laura Jacobs  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.

Ron Broadhead  Bobbi, I'm sorry you are having such difficulties, but it is good news that you have such a good heart specialist that you like so much. Best wishes and prayers for you.

Janette Rehua  I have problems with breathing and was told because my 'issues' are the right side of the heart the side controlling fluid- that water was building up in my lungs-since I had my AF I have been on diuretics and they have helped enormously

Bobbi Rockey  I'm on a lot of diuretics. I have interstitial lung disease. They thought after heart surgery I could go off the diuretics but that has not been the case. Thanks for helping me not feel so alone.

Bobbi Rockey  I am on a water pill, warfarin,aspirin,magnesium oxide,ariprozole, omeprazole, trazadone , cetirizine, fluvoxaMine and metoprolol.

Bobbi Rockey  I don't think it is medication related but who knows? I was hoping somebody felt this so I could figure out what was causing it in me.

Wanda Mroz  Wow... You are on a lot of meds. What does the doctor say? I can't remember really feeling that way other than normal weak shaky after surgery which went away as I got stronger. 💞

Bobbi Rockey  The doctors are baffled. I'm still working at getting stronger. Perhaps pushing myself too hard? I don't know.

Bobbi Rockey  Seeing my family doctor Monday. It might be a UTI infection or electrolyte in balance someone said

Wanda Mroz  Don't push too hard. Give yourself a break slow and easy. You need healing time for your body. Curious what the Dr will tell you.💞

Lilly Black  I agree with Wanda. Don't push too hard. But that is a lot of meds. Personally, I would have all kinds of side affects. But that's me and I am not a doctor, so what do I know about meds. I did not do well especially with the water pill and the metoprolol combined. I had nightmares and I felt woozy all day. I don't need meds anymore, now post 1.7 yrs since surgery...only 1 daily baby aspirin. Also I have seen my husband on too many meds, and he has definitely improved since he and his doctor figured it all out. He is only on the meds that he needs on a daily basis for asthma and to control the high blood pressure. He's back as the husband and friend that I know so well. I wish you well. Take one day at a time! Feel better, and I hope your doctor will help you figure it out. Take care.

Bobbi Rockey  Thank you Lily. Hopefully one day I will be on less meds. The days that I am less active I seem to do better but who wants to sit around all day. I will try not to overdo it and Monday hopefully my doctor will be able to give me some answers even if it is a medication problem. I just want to feel strong and healthy again. Thanks for sharing your story with me

Kate Watson  I have very similar side effects from caffeine too, makes me feel like I'm going to die because my heart races. I have avoided it for years because of that.

Lise Bowles  There are some great herbal teas with no caffeine, and for coffee drinkers Altura organic decaf is wonderful! (Coffee is apparently one of the most heavily sprayed crops in the world, who needs all those chemicals???

Bobbi Rockey  Thanks for all your comments. Nice to know how others are doing. Denise I am on coumadim so thanks for that tip

Sophia Ridley  Me neither, makes me all v odd. There are some good decaf black teas on the market which taste fine, although you may wish to brew a little longer... Twnings do an everyday one.... Had to be a Brit to comment!! 🇬🇧

Meredith Bray  I had caffeine intolerance prior to surgery. First thing I did when I got home from surgery was make a pot of coffee. I'm back to being an addict again, I love my coffee throughout the day.
Coumidin patients need to do their own research and see what teas affect the INR and which don't. I don't tolerate green tea or rooibos tea, they make my heart flippy and my head spacey. But I love my chai!
-Meredith

Bobbi Rockey  Thanks Ron. I've been so worried I'm grateful someone offered me hope today. I appreciate your comment too.

Rita Savelis  To be perfectly honest, I am feeling really tired on stairs and feel I have less physical energy (a year after OHS). Doctors pronounce me fine, but I am certainly not "better" than before. At least the heavy depression I had for months after OHS has lifted (with the end of betablockers) so I feel I can manage the lack of physical energy. I certainly feel like I have to take things at my own pace. Before OHS I used to run around and had boundless energy. Perhaps it's old age, perhaps it's the heat. Perhaps it's just the inevitable slowing down.
I feel for you, Bobbi, healing takes a long long time and we don't always notice improvements. Tell your doctors how you feel and see what they say.

Bobbi Rockey  Thanks Rita. Sorry for your problems too. I'm definitely not improving like I hoped. I may need to accept a new normal for myself. It's so sad. Are you able to work? I have tried but do not have enough energy.

barrett burris  I was of the misguided opinion, that strength and stamina would return to my body as it healed, like after a cold. Nope..not how its worked for me. I've learned it's more like learning to walk again, the strength and stamina has to be built. Built by exercising and increasing duration and difficulty as appropriate per doctor's orders.
Prayers for your continued healing and peace.

Bobbi Rockey  Thanks Joanne and Barrett I have noticed what you say to be true in my own life. Your outlook on it is very good and makes me feel if I look at it that way things are more hopeful

Rita Savelis  It took me a long time to get (some) energy back, and you have lung disease as well, Bobbi.... I went back to work about 3 months after OHS but it was tiring. I have a sedentary job these days and the stress is low so it was okay.
I remember my surgeon telling me that I would be tired for a LONG TIME and I was glad he was brutally honest because it made my expectations lower. Feeling such a lack of energy is hard. I feel for you, Bobbi.

Bobbi Rockey  Thanks for sharing that with me Rita Savelis. I was told if I ever worked it would have to be a sedentary job. I had a desk job but you still have to walk to the building and I can't bend over to file w/out being out of breath. Our copier machine was down a hallway too. So many obstacles to overcome. I wish you the best. Hope you get your energy back.