Wendy's Journal

Well it has been almost 10 weeks since I had my valve replacement. Overall I am feeling really good. They still have me on a beta blocker and diuretics. I am walking 3-4 miles everyday. I have noticed too that my endurance has really improved over the last couple weeks. I can actually walk up stairs without any shortness of breath. I have started to run some but mostly for very short bursts while I am out on my walks. I am pretty excited because I signed up for my first race. I am doing a Rock N\' Run 5 miler this Saturday. Of course I will be mostly walking but I am just happy to be out there again. My only complaint at this point is I feel like I am still having alot of sternum discomfort. Not enough for me to be taking more than an occasional Tylenol but enough that it is really annoying at times. (Esp. when I\'m trying to run) I have heard that it could take up to a year but I am really hoping it wont be that long. It does feel so good to have surgery behind me and to really start to get back to normal. I keep checking things off my list. Thoughts and prayers to everyone waiting and recovering.

Well this is my first entry since surgery and boy has alot happened. My surgery date was originally planned for March 19th but there was a little bump. Turns out I\'m allergic to some of the meds used in the OR so I ended up having an anaphylaxic reaction and instead of waking up later that day with a new valve I woke up with a chest tube in my right lung for a pneumothorax. They aborted surgery kept me in the ICU overnight then rescheduled surgery for the 22nd. I stayed in the hospital until surgery and the second time around went much smoother. I think they were pretty prepared. I ended up with a bovine trifecta valve which they did have to do a root enlargement and also a single bypass of my RCA where they used my right saphenous. I think my recovery was very smooth in the hospital. Pain was controlled the only complaint that I had was that I was having alot of shortness of breath. I was discharged on post op day # 5 and feeling pretty good. I was told I had small pleural effusions to both lungs but they weren\'t too concerned. I stayed in Cleveland until Saturday and flew home. The shortness of breath continued but I still figured it was normal. But then the Tuesday after I got back I had an episode where I was extremely uncomfortable my abdomen was huge and I felt like I couldn\'t breath but it was when I stood up and then proceeded to pass out that I thought it was time to head to the ED. They said my valve looked great and wasn\'t real sure why I passed out but they did discover that my pleural effusions had increased and now they were pretty significant. They decided to tap each lung and after draining almost 2 liters of fluid my shortness of breath had definitely improved. I felt so much better but still just really tired. My blood work came back and it showed that I was anemic. Luckily they were fine with sending me home and doing an anemia panel as an outpatient. I went this morning for my labs so at this point I\'m just waiting for the results. They started me on iron but she did say that if my H&H keep going down I may need a transfusion. So at this point I\'m in recovery mode trying to walk when I\'m not too tired and still using my incentive spirometer throughout the day. My husband has been on top of that. I have slept in my own bed the last two nights with only a couple extra pillows but I\'m sleeping well. I\'m mostly just taking Tylenol for pain but occasionally I add an Oxy. I am just so happy that the surgery is behind me and even though there have been a few bumps I know that I am strong and I can get through anything. I am looking forward to the day that I am back to my normal self. I have had the best family and friends with me and who have and are continuing to give me so much support. I definetly couldn\'t have gotten through all of this without them. Thanks to all of you for your words of prayers and encouragement it has meant alot. I want to send out prayers and well wishes to all waiting and recovering. Each day it gets a little easier. Wendy

I am now six days away from surgery and was curious about follow up care. When I first met the surgeon back in January he told me that I would have a two week followup with him but when I read about other people that travel it seems like people are heading home soon after they are discharged. My plan was to stay in Cleveland for two days after discharge before heading home. What have been others experience with followup care when you are traveling from out of state? Thanks, Wendy

I will be having my surgery in just over 3 weeks and this waiting is tough. I think that my mind is a little preoccupied because I am still trying to decide on which valve to choose. I keep going back and forth between the two options. I think I am now leaning toward a tissue valve. The more I thought about mechanical and Coumadin I just really dont want to have to think about everything that goes along with taking it but I also am not to keen on having another surgery 10 years down the road. I guess I am hopeful that by the time I need a redo that they will be doing the percutaneous as a standard of practice for valve replacement. My biggest concern is the affect that radiation has had on my heart and knowing that I could have increased complications because of that. Anyone out there have any experiences with radiation heart disease that would be willing to share? I meet again with the surgeon the day before my surgery on March 18th so I am still preparing my list of questions and I guess I will be just making my decision then. Thanks for listening. Wendy

Well I just got back from Cleveland where I had a second opinion. They did an echo and it does show that I am in severe stenosis. My function looks good but I was told that my BNP was mildly elevated so it did show that the heart muscle shows some strain. With my symptoms they are recommending surgery. I was very impressed with everyone at Cleveland Clinic and will definitely be going there for my surgery. The cardiologist is setting up the meet and greet with a surgeon and he also wants to do a cath and a chest ct. Thinking that will happen in January. I was hoping to schedule surgery for mid March ( both kids in college and their spring breaks are the same week) but of course after I meet the surgeon if he felt I needed it sooner then I would go with what he recommended. I am a little overwhelmed with the idea of surgery but I know this is what I need. I am so glad that I went in for the second opinion. We are our best advocates and being proactive is so important. I knew how I was feeling and after my local cardiologist says you sound severe but see you in six months it just didn\'t sit well with me. When he tells me you don\'t want surgery, who wants surgery but do I NEED surgery and yes it looks like I do! Thanks for listening, Wendy

I am new to this site and am hoping to get some feedback from people who have experienced issues with their valve. I am so confused probably because I am reading so much and hearing so many different things. First a little bit about myself. I am a very active person and one of my favorite things is running. I have run several marathons with my last one back in October of 2011. I noticed my endurance changing throughout that year but I kept going just a little slower and having to take more walking breaks. My problem is that since about January of this past year I have not been able to run longer than probably 2-3 minutes at a time without feeling a dull pain in the center of my chest and then shortness of breath with a slight dizziness feeling. I can not walk even a flight of stairs without having those same feelings and I am also noticing that I get very short of breath when I carry anything on the heavier side, like carrying a laundry basket up a flight of stairs. I can definitely tell that these symptoms have worsened over this past year. My cardiologist says per my echo it shows that I have moderate stenosis with moderate regurg but he says that listening to my murmor he thinks the echo has underestimated and he feels like it may be severe stenosis and that could explain the symptoms I have been having. So my question though is so when is it time for surgery?? Everything I read it says that severe stenosis with symptoms surgery is needed but my doctor says we are in monitor mode and we will continue to watch for change in symptoms. What kind of symptoms would we be watching for? Would it just be worsening ones from what I am experiencing already? I think that my stenosis has progressed so quickly that it worries me a little. I think that I am just frustrated because I cant do the things that I love to do and I hate not knowing how long it will be before I can do it all again. Any feedback would be so greatly appreciated. Thank you in advance, Wendy