Debra's Journal

I had aortic valve replacement on February 23, went home feeling pretty good on the 28th. I felt better each day and was amazed at the speed of progress. Until this week. By Monday the 7th, I started feeling more tired than usual since surgery. Each day got worse, and Wednesday evening I had, very temporarily, some numbness in my right hand and right side of my face! By the time I called my surgeon and was on hold for the answering service, it went away. My in home nurse came the next day, and she told me I should call the surgeon. The nurse there said maybe they didn't put me on enough blood thinner, aspirin, and put me on Plavix. (I got a bovine valve for fear of always worrying about coumadin. I'm a worrier!) The in-home nurse also told me I should get my bloodwork checked for anemia as well as my hypothyroid, just to be sure. When I did that at my Primary care Physician's office, the doctor ordered chest xrays stat to check for fluid (I was having a little more difficulty breathing since yesterday, something that hadn't been a problem at all since I came home). I didn't hear anything, so I assume it was ok. But now I'm constantly worrying about a stroke since the numbness was a symptom, and also about why I'm having a little difficulty with deep breathing. I have an appointment with my cardiologist Monday and the surgeon Wednesday for check-ups. I just hope I don't worry myself sick before then. I'm really really tired all the time now instead of feeling better. I'm starting to feel a little depressed since the reason I was not afraid and even wanted surgery was to finally feel normal, and now I'm seemingly going backwards. Has anyone else had any of these difficulties? It is so inspiring and uplifting to read others' comments and stories and triumphs, thank you all so much for taking the time! It's part of what gets me through, even though I don't post as much as I'd like. I just don't think to that often, I'm too tired!

Well today's the first day I've felt like even looking at my phone for long enough to post anything! I had surgery on Tuesday afternoon, aortic valve replacement and aneurysm repair! I went with the bovine. I could tell my surgeon wanted me to get mechanical, but I'm a worrier so at the last minute my husband and I decided that it would just be a huge source of worry and stress for me every day to be on coumadin. I feel at peace with our decision. Now if i can just quit feeling nauseous and not have pain at the same time I could go home! I'll post more later, eating my second meal since Tuesday!

My surgery is postponed! Today my surgeon was thinking about how I take ibuprofen and/or excedrin every day for headaches, and did a platelet blood test for clotting, and it's not clotting well. He wants me to wait til Monday or Tuesday to get it out of my system so I don't have to have more transfusions and blood products than necessary. Also he wants to do an MRI to see if there's a specific reason for so many headaches.

Well I just found out my surgery for aortic valve replacement, as well as aneurysm repair, will be tomorrow morning!! I'm excited to have it fixed and be on my way to feeling like a normal person, as much as that is possible, and become active again! At the same time I'm feeling nervous and a little scared. Not just scared of surgery, but more so that something won't go quite right and I won't feel as wonderful as I hope. But deep down I know that God is on my side and will be helping with the whole process, so I know it will be fine!I Even my surgeon, Dr. Mark Sand, told me to think about and pray about what kind of valve I want!! To hear him tell me to pray about it confirmed to me that I chose the right surgeon!! I wouldn't want him to do it without God's help!! That brings me to my other concern, what kind of valve?! I thought I had decided and made the right choice for me, bovine. I didn't want the worry of Coumadin. But he told me that since I'm small, 5'3", my valve may be too small and that would make it more difficult, or not as practical, to then place another valve inside of that one through an artery rather than open heart again, (I assumed by then that's how it would be done) when the time came for another new one. That threw me for a loop, but now, after thought and prayer and discussion with my husband and parents, I'm pretty sure I'll go with mechanical. So that's where I am right now, and getting ready for a ct scan at 12 today.

Well it's been a while for me again, but I finally have a surgery date!! Well kind of. I found a surgeon I like, so I called my cardiologist's office to schedule my cath. He said they won't let me go home after, it's too bad and I need to stay after the cath and have surgery. So, I go in tomorrow morning and have my cath at 7, then depending on how many tests I need, I'll have surgery either Thursday or Friday. I'm kind of excited because I have not felt well for the lay 4 days, just no energy at all!! But I'm also kind of nervous, it is still scary. But I can't wait to start healing and feeling well again!!

It's been a while since I was on here, I've had so much going on that I didn't ever want to make it too long. But I am so confused and could really use some advice! I changed cardiologists around December 2015 I think, mostly for the reason that I could never get phone calls to my previous cardiologist's office answered OR returned, for anything at all. I got very tired of that and decided that wasn't how I wanted this very huge aspect of my life to go, trying to get in contact with a doctor and not being able to. Well, I like my new doctor, but he and his staff kind of confuse me. I told them that I wanted Dr. Kevin Accola in Orlando to be my surgeon, but he doesn't accept my insurance, so I would like some recommendations from him. His nurse told me that he wants me to go in for a cath one day, stay there, and the next day have the surgeon on call perform the surgery! This doesn't sound like what I've been seeing that people on this site do, so I thought I'd ask what is "normal". That doesn't sound really appealing to me, to just go in not knowing who will perform my valve replacement and not knowing his record or his history with this surgery at all! Am I right? Also, I'm pretty sure I want to have a pig or cow valve, but I need to be able to tell a surgeon that before, and make sure he thinks it will be ok before I have to find out that maybe that wouldn't be the best choice for me. I wouldn't want to have to have a sudden change of plans for that on the morning of surgery!! Therefore I would need to meet with him!! Is there anyone on here that's had surgery at ORMC in Orlando? That's where my doctor wants me to go, as do I.

I was born with Aortic Stenosis, discovered when I was 4. I have always been active and loved sports, but avoided contact sports as the doctors said. Over the last year or so I have slowed down some, having more days of feeling too tired than in the past. Since about May of this year, I've noticed very obvious changes in myself. I would have to stop and rest after doing things like going up or down stairs, but most shocking was that I would have to rest and breathe just from bending down for something. Then I started having more and more days where I just had no energy, and wasn't exercising much at all. I started having to take deep breaths much more frequently than ever, even though that has been common throughout my life, but only here and there throughout the day. It has become an every minute or few seconds thing. So I finally went in for an echo, and as I had already determined on my own, my doctor said my #'s are worse and I most likely need surgery. (I have been moderate to severe and then severe for as long as I can remember, just asymptomatic, until now.) So, at first I was kind of relieved because I just thought, "I'll feel like a new person, and I'll be able to do all the things I couldn't do all my life!" I'm only 44, 45 next month, and have tons of energy for the most part, despite AS as well as hypothyroid! So it was very disappointing when the doctor said I need a mechanical valve since I'm young and would need surgery again in 10-12 years with a tissue valve. I do not want to be on coumadin, and I certainly don't want to be limited in what I can do since I know I'll feel like doing so many things I couldn't before! I'm still in the process of researching the pros and cons of both, and how bad more surgery would be at around age 60 or so. Does anyone else have AS as well as hypothyroid? I've always wondered, as have the doctors, if my sometimes lack of energy was more from my valve or my thyroid. I'm kind of excited, just because it can only get worse if I don't fix it, and I cannot wait to feel even better than I did two years ago, but I also feel very scared and nervous and alone in trying to make this huge decision. I know this is long, thank you for any information and input!