Sara 's Journal

Hi all! It's been SO long since I've posted and I hope everyone is happy, healthy, and kicking butt in their heart healthy journey. I have a Covid-19 question that maybe someone can answer? I had a tissue valve replacement in January of 2019. Am I still considered to have "heart disease" due to my issue being fixed for the time being? Thanks for any input!

January 8 vs February 8 🎉🎉ONE MONTH🎉🎉 I’ve been so excited for this day! I think back to one month ago and how far I have come. 🎉Updates: ❤️ I’ve gained so much more energy over the past week or two. I’ve been going more places and doing more things. Although it feels good to be out, I do still enjoy coming home and taking a cat nap. My energy level definitely is not what it used to be but is improving. ❤️ The only pain I have is in my sternum/chest area. It is manageable and tolerable but is worse first thing in the morning and in the evening. My incision opened just a bit in one small spot but is healing nicely. ❤️ Sleep is slowly getting better. Some nights I feel very jittery and need to listen to a meditation to help me fall asleep. My span of sleep is increasing and I even rolled onto my side for a short time last night! ❤️ I believe I have set a world record for not sneezing. I can proudly say that I have not sneezed since before January 8. 🤧 ❤️ I am becoming more antsy to get moving! The nice weather has gotten me outside and walking. I’m told cardiac rehab will not begin until after my second postop appointment later this month although wishing I could start sooner. ❤️Mentally, my spirits are high and positive. Friends and family keep me smiling and motivated.

Hi all! I put a big 3 week post surgery update on my Instagram page yesterday and forgot to add it here. I’ll have to add it later. But this morning, i noticed a piece of my scab had pulled away from my awesome looking incision to reveal a piece has pulled apart. Ah! Anyone else have a tiny part start to pull apart? Waiting to hear if the dr wants me to come in. The home nurse measured it to be about 1/2 cm long, .2 cm wide and maybe .2 cm deep if she were guessing the depth. It was healing so well! Just hoping it didn’t stretch in a way to make it separate. Thanks for any feedback! Sara

Hi everybody. I’m 15 days past surgery. Every night at the same exact time, about 8pm, I develop a low grade fever (between 99.9 and 100.7). Luckily, when I wake in the morning it’s gone. I feel fine too. Just my face feels warm and flushed. Has anyone else had any weird reoccurring fevers? I’ve been taking 2 Tylenol when they arise. Thank you ☺️

Today marks 2 weeks since my valve replacement and fixing of my aortic aneurysm. TWO WHOLE WEEKS! I remember reading people's recovery stories wishing so badly that I was on their side of recovery, and there I am. Does it feel like it's been 2 weeks? No. I also think I've come a long way in those 2 weeks. It hasn't been easy, but it hasn't been unbearably hard either. The worst part of the surgery (for me) was the day before, the morning of, and the 2 days afterwards. I was SO incredibly sore. Not from my incision, but my back, neck, and shoulders hurt like I was hit by a large truck. No position, movements, rub, or medications took away the aching in my muscles. Still today, my shoulders are still sore, but nowhere near those earlier days. Today: I'm breathing deeper, moving a bit faster, a little more limber, and have learned some little tricks here and there of how to open/close things and live more independently without having to rely on everyone like the first few days. I still feel like my heart beats HARD. My blood pressure is good, but my pulse is still high. Before surgery, resting was 58-60 bpm. Now, it's still in the 80's/90's. Almost all day, I can feel every beat my heart makes. It isn't as bad as it was, and I'm hoping i'll still feel improvements. If I exert myself a bit too much, or take too big a breath trying to beat my spirometer goal, I feel like my heart beats something fierce up into my neck and head...weird feeling! I've gained a little following on my instagram page I started (bravefaithfulheart) and have made new friends all around the world who have gone through or will be going through heart surgery. I want to round us all up to meet sometime! Can you imagine all the heart warriors in one place showing off our proud war wounds? Awesome! I haven't had too many hiccups along the way. A slight fever worried me the other night. Other than that, and 2 breakdowns earlier on, I've been in good spirits. If I feel this good after 2 weeks, I'm anxious to see how I feel in 2 more. One thing i'm super proud of... I have NOT SNEEZED since before January 8 (surgery day)...knock on wood. haha. I hope that continues until my sternum is healed. I'll try everything to avoid that sneeze. Alot of reading, tv watching, visiting with friends, and naps with my 4 year old have consumed my days. My appetite isn't back to normal yet, but I'm ok with that. I'm trying to get as much water consumption as I can, too. I'm sleeping OK. I can't say I have any pain. At least no pain that isn't manageable. I do still take an ultram at night to help me sleep. I'm thinking weaning off should be a good idea. I'm usually awake/asleep/awake/asleep between 4:30 and 7:30 trying to get comfortable from laying in the same position all night. Tomorrow, I got for my post op visit with my surgeon. Do they just check me out and ask how things have been going thus far? So far so good! Sara

All post surgery patients, I’m 8 days post surgery. Where my adhesive was around my incision is super itchy and irritated! Anyone else have this issue? It’s spreading a little out onto my chest. It’s only on my chest and belly area (thank goodness) and not all over my body.

Tomorrow marks 7 days. One whole week since surgery. Wow! I can’t belive how far I’ve come in 7 days. Amazing what the body can do but i need some suggestions for a few things: 1. How on earth do you keep comforbale in a recliner without using your arms to adjust your body? 2. Other than heating pad, roller ball, oil rub, massaging.... any other suggestions to get the aches out of my neck, traps, and shoulders? They’re way worse than my incision itself. Thanks Warriors! Sara

Love love love to be home. I did enjoy the security of the hospital by being hooked up to monitors. I feel like my heart beats normal, then hard, then pounds, then palpitates.... i guess it’s trying to calm down from being poked and prodded too. There were no flags from the second the surgery started so they had no reason to keep me there. My surgeon said surgery couldn’t have gone better but my regurgitation was more severe than any test showed and actually my echo showed more than the mri. My muscle aches are slowly subsiding although my neck and shoulders still are so tight. I stopped the oxycodone quickly. It made me feel beyond awful.... scary thoughts, sweating, rapid breathing, cloudy memory.... yuck. I feel so much better off them. Every so often I take Ultram but so far being home, Tylenol has been just fine. My plan is to shower or have someone help me shower today. I can’t wait for a good shower! I’m sleeping in a recliner which is what it is. I miss my bed but know it’ll be a while before I comfortably roll on my side. So far so good. It hasn’t even been a week. Our body’s are amazing, doctors are amazing! Thinking back to the past few days is a big blur. So so so happy to be on this side. To those who did it, I get it! Waiting is so hard. The unknown is even harder. Those of you waiting, in a snap you’ll be home in your recliner too thinking “did i seriously just have open heart surgery!?” Life is good! Sara

Surreal! Lots of prep and finalizing these last few days. All my tests and bloodwork came back and all looks good. Amen! I finished up my work week with my first graders. Today was my last day until April. They had so many questions and some were brought to tears. I didn’t even tell them much, but it still got me emotional a bit. My coworkers are incredible and worked together to round up lots of gift cards for my family to use while recovering. So nice!!! I went to Khols and loaded up on a new robe, button up jammies, comfy pants, etc for my days at home recovering. I haven’t packed yet but made a list of all the things you all suggested (thank you!!!). I even started an instagram page to document my reset and process as I heal. It’s amazing the connects that can be made through social media. I’m sleeping at night just fine. Although nervous, I’m proud of how calm I actually am thus far. I think I’ll be fine until Monday night and surgery day on Tuesday. I can’t believe that after this weekend it’s time to rock and roll. I consider my lifestyle a healthy one but I want to eat as healthy as I possibly can after surgery. From what I hear and read, I won’t have an appetite for a while. Do (Did) you follow a certain eating plan after surgery? Low sugar for sure. I give my calm self being to all of you keeping me positive and optimistic! Thank you!!!!!!!!

All that keeps resonating in my mind today is that it’s the 8th. The next 8th is surgery day. I’ve been so ready, so optimistic, so eager to get it done. Today, my stomach has butterflies and I’m feeling more nervous than I’ve felt. How often do things go wrong? Is my heart palpitating more today because its a symptom or because I’m growing more anxious? How bad will this hurt? Will my little girl be ok home with Dad and her grandmas who will be babysitting her? $h*t is getting real! What were some ways to keep calm before your big day? I did get a massage yesterday that was so relaxing. One month... one more month....

Hi all! I know some of you had answered so many of my questions prior to this post, and I'm sure more now will be coming. The picture below was from my MRI that showed it's go time for surgery. I'm a young 35 year old active mom and healthy! My plan was to go to Cleveland Clinic but then I fell into the hands of Dr. Bailey at Allegheny General Hospital in Pittsburgh, about 35 minutes from my home. I can't say enough good things about him, and feel confident that he's going to take good care of me. He HAS to take good care of me. I've seen this surgery coming for about 2 years now, but am in high spirits and am ready to tackle this feat! I only get emotional when I think about my four year old daughter. I HAVE to get through this for her. Reading your posts have given me such confidence that I'm going to go into this and come out stronger than ever. From what I'm reading, the anticipation is the worst part. I'm in high spirits right now and am glad that the hustle and bustle of the busy holiday season will keep my mind off of it. I have a fantastic support team of my husband, parents, in laws, grandparents, aunts, uncles, friends, coworkers, and even students! (I'll be taking some time off of teaching my first graders.) I'll be having an aorta tissue valve replacement along with the fixing of my aortic aneurysm. The size of my heart and my wonky looking aorta tells Dr. Bailey it's time. Since the heart is a muscle, can the size go back to normal? Another sigh of relief is that once fully recovered, I will get the green light to try to carry a pregnancy! How awesome would that be!? I'm so fortate for this site to post, ask questions, and read real stories. Thank you ALL! You're all an inspiration. Cheers to starting 2019: beginning a new year, and a new chapter in my book of life! Sara

Hi all, I feel like my journal is going to get longer in the next few months. I met with my cardiologist today. My echo results aren't in yet, but we had a long, extensive talk about surgery. Because I'm young (er) and want more children, I have really been weighing the pros and cons of valve replacement (bicuspid aortic value being replaced with a tissue valve) and also fixing my dilated aortic aneurysm. I LOVE my cardiologist, Dr. Follansbee, as I said in my last post. He didn't tell me what to do, but really spoke my language when making a decision. "There's no greater gift than extending your family and don't let the thought of surgery keep you from that." After meeting with him, I want the BEST care from the BEST doctors. Because I live in Pittsburgh, the UPMC doctors I want to see aren't covered by my Highmark insurance, which leads me to Cleveland Clinic. I would like recommendations on the best surgeons at Cleveland Clinic and need your help! Feel free to share success stories, too! The sooner I plan this and go the better! Thank you all! Sara

Hi all! I have found so much comfort in reading everyone’s corgagous stories! I’m seeking advice as I round the corner to my next cardiology check up next week. I have a bicuspid aortic valve and an aortic aneurysm. Forever, the dilation of my aorta was 3.5. I was able to carry a baby who is now 4 years old. Jump ahead to a year ago, and the dilation now sits at 4.4. After speaking to many doctors and surgeons, I have accepted that trying to conceive would be a poor and risky decision. For a while, I felt at peace with having one child, but my husband and I are now wanting more kids to add to our family. My question is: is it worth the surgery? I realize that’s a question I have to dig deeper into with myself being the ultimate deciding factor, but after reading so many success stories, I’m hopeful that my recovery would also be one to add to the list. I’m 35 years old, and if more children are in my future, I really don’t want to hold off much longer, but the thought of the surgery holds me back. Obviously I would have to get a tissue valve. The new longer lasting valve Adam posted about a little while back really sparked my curiosity. Being that I’m only 35, another procedure is almost guaranteed down the road as I age. I live in the Pittsburgh area, and love my cardiologist Dr Follansbee. Unfortunately due to insurance battles, I am not able to see him much longer. I have also met with and like my surgeon, Dr Culig out of Forbes, but am willing to get other opinions and open to good doctors any of you may suggest in the area. I’m also not opposed to travel a little if it’s for the best care. Are there any women who went through the valve replacement around my age who then had a baby when the time was right? Thank you for any help or guidance!