Tanya's Journal

Gina Fiorentino  Thanks for sharing. I soooo appreciate it, and wish you continued strength, vitality and lots of positivity!

Elaine Phares  Thanks for your great update! I love reading these and at my 6 months (I go in in Tues), I will be flying to see a new grandchild. Lots to look forward to.

Celia Waterkeyn  Well done. It’s important for us to share our recovery stories as they vary so much. I know I found it so helpful reading them before surgery. It helps you prepare. 😊

Heath Knight  That's awesome. I am almost to the 6 month mark myself definetly have had some struggles, but we all make it through. I have been running on the treadmill for about a month now. Building my endurance. I also have been weaning myself off of the metopropol . Good luck to you and a speedy recovery which it seems you are on your way to.

Clayton Mcarthur  Your appetite will return quicker than you think and after another week you will get much stronger , hang in there :)

Jennifer Barnett  My appetite took awhile to return so I just ate what I could even just some fruit or dessert whatever you feel like as it will help you recover, your appetite will come back soon, the anesthetic and medications muck your system a bit but after about 10 days post op you should feel more like eating normally again.

Cathleen Weed  I craved weird things like cottage cheese and pistachios lol. Eat ANYTHING that sounds good right now. You need calories to heal, especially protein! ❤️

Marie Myers  I made a small "milkshake" every day with soy milk, my fav vanilla ice cream and a scoop of whey. It was tasty and filled with calories and protein. I ate very small portions for a week or so till my appetite came back. I also took iron for 3 weeks to help my hemoglobin increase

  I am so glad you are doing well. Thank you for explaining how you felt afterwards. This is so helpful for those of us who have this in the future. I hope you continue to progress and feel better with each new day.

Barbara Wood  I used Ensure, my appetite was nonexistent & food really tasted "off" Congratulations, you will quickly feel better!

Bob Gillespie  Thank you for this post. It has helped relieve some of my anxiety, I'm less than two weeks out. So happy you are doing well.

Vanessa Corwin  Your appetite will come back, don't worry about that. Those first couple of wks post surgery can be hard... but all that stuff resolves, Glad you're doing well

Rita Savelis  It's typical to lose your appetite. Start slow and eat just what you want to eat. Don't force it. It took me a long time to get an appetite back. I ate in a mechanical fashion only because I thought I should and not because I wanted to. Soup was one of the few things I could eat. It was months before I felt hungry. And I could not stomach anything sweet.

I also hear you on how difficult those first days are. It's intense. But you move forward somehow. The first seven days after surgery were exactly alike for me with no improvement.....then on day 8 I finally felt a tiny tiny bit of improvement. And it moved on from there.
Take care Tanya.

Rose Madura  Glad you are doing so well. I had the same issue with my appetite while in the hospital. I ate what sounded good and tried to eat some protein every day. My husband made me healthy smoothies when we got home using ensure as the base liquid. Much easier to tolerate and tasty as well. Blessings to you as you continue to recover.

Steve Farthing  The trend is to remove the breathing tube as early as possible, sometimes even before the patient leaves the OR - so you will probably never know it was in there!

Tom Spicknall  Tanya I don't even recall waking up from surgery let alone the breathing tube still being in. You will be fine, just have faith. What got me through to my surgery was an anxiousness to get started on the road to healing. I'm 5 weeks post OHS with a AVR and a quad bypass. I'm doing well and you will be too. Prayers are with you.

Cindy Williams  Take the pill, it will help you sleep well, you need to rest your mind and body :) I have not had my surgery yet but I have the same concerns you do. Steve is pretty informative :) I wish you two wonderful nights of sleep and a flawless surgery, I'll be thinking of you, take care 😘💖🙏

Lewis Garlisi  I recall a few people having similar concerns about those, "little things". I did too. You probably will remember very little, if anything, about the vent tube. The health care team will take care of those things that you really have no control over. Your job will be pushing yourself towards a gentle recovery. Best wishes.

Kelley Turnbull  I did have those concerns and don't remember much of ICU except that my family was there. That was comforting. The waiting is very hard. Hang in there and any way to relax that works take it . Lots of prayers coming your way

Rita Savelis  Of course! It's completely normal to fear the unknown. You'll be asleep for OHS but most everyone worries about what waking up will be like and the breathing tube. I feared the breathing tube but wasn't aware of it being taken out - maybe I was still groggy and out of it.
Recovery is no piece of cake, but you take it one day at a time.

Civita Fahey  Tanya, I had every single fear that you are having right now. I did wake up with tube still in mouth but , it wasn't as bad as I had imagined. (read my journal, I wrote everything I remembered from the day of surgery).. keep thinking positive thoughts and you will be fine..Its not easy.. I know.. I will pray that all comes out well for you.

Marie Myers  Agree with Civita. My biggest fears turned out to be non-events! Take the anxiety Meds- I did and it helped!

Rose Madura  I too had fear of the breathing tube. It was still in when I woke up in CTCU but it wasn't too bad. So just try to stay calm. I prayed a lot - that helped me more than anything. Remember that God is in control pf everything.

Laura Jacobs  HI Tanya, My biggest fear was waking up with the breathing tube still in and that was exactly what happened. Apparently I was fighting it in my sleep and they had to tie my hands down. When I woke, I saw my family, realized my hands were tied, and immediately told myself to focus on relaxing and accepting that it wouldn't be there if it wasn't necessary. If you wake up with the tube, close your eyes and just focus on something soothing and relaxing...remember that it is all mental. Rose is right, it is not as bad as you think it will be and it doesn't last long. Don't fight it.

Barbara Wood  I woke up with the breathing tube still in, but only vaguely remember it. Like Laura, had to have my hands tied down. The worst part for me of the entire stay was the nausea on the second day, but only lasted a few hours. No pain having the chest tubes & wires pulled - really the whole stay was so much easier than I expected it to be! Best wishes to you & Seph, Tanya- prayers & positive vibes sent your way:)

Dorothea Sautter  Tanya, I am worrying about exactly the same 'little things'. Very reassuring to hearing from all the others and their experiences. Wishing you the very best for your surgery!

Lilly Black  That is a good sign Tanya. I felt like that before my second surgery and so by the time they wheeled me into surgery, I was ready and at peace with it. I wish you a great outcome!! good luck!

Ruben Romero  Hello Tanya. Everything will be fine. I'm 41 and about to go in for a second surgery. Not worried about living though it but going through the difficulty of the surgery again. When they have to open you up, Like they did for me, the recovery is hard physically and emotionally but know that it does get better.

Will they be able to do a TARV? I've hear that recovery from that is way way easier.

Jennifer McInerney  Good luck Tanya. My symptoms have just started and im waiting fr a surgery date. Hope all goes well and you have a speedy recovery

Tanya Ammons  Ruben, I'm having OHS. How long did it take you to fully recover from your first one? That's the part that I am the most nervous about.

Barbara Wood  All Will be well Tanya! I am 8 weeks past mitral valve repair with full sternotomy & feeling very normal- living with no pain or restrictions, back working & going to cardiac rehab. The first few weeks were uncomfortable, not painful, due mainly to lack of sleep& afib, I couldn't get to sleep on my back...the incision itself was not painful. The first 2-3 weeks are the hardest, lots of fatigue, but then you start feeling stronger & better. Really recovery was far quicker than I expected. Best wishes & positive vibes sent your way:)!

Laura Jacobs  Glad that you surgery date is set. Now you can do some planning. I am 4 weeks past AVR and aorta replacement. Still a little sensitive around the sternotomy and shoulder incision and some shoulder/back discomfort. Energy is getting much better. Walking between 2 to 3 miles daily but not all at once. Sleeping much better too.

Ruben Romero  Tanya. the recovery is hard with OHS. plan on at least 8 weeks. You'll get through it, but it's good to know before hand how hard it is. Everyone's different so even similar types of people can have different experiences. I think it's harder when you're young because your nerves are in good condition still so you feel things that others might not. For me, I needed help to put on socks, couldn't reach for anything high for a while. My back really hurt because of the pressure OHS puts on your spine and then I wasn't able to sleep on my side because it was too much pressure on my sternum so I could only lay on my back which exasperated the problem.

My mobility was limited. I wish I told people not to come visit me in the hospital because I was all drugged up and couldn't carry on a conversation with those that came, which was very awkward. Or I wish I had at least known that so I could tell them when they came to visit, to just come and visit and not expect any response from me because I'd be too drugged up. I got really depressed in the hospital being alone and uncomfortable.

It's also hard to be away from work for so long (I own my own business)

Hopefully your experience isn't as hard as mine was and that my experience doesn't scare you. I did get through it and I'm about to get through it again. I have tissue valves and I may do them again so I know what I'm getting into.

My biggest regret from my first surgery was getting both valves replaced. I had no idea that it would decrease my chances of getting TAVR in the future and may have opted for just replacing the aortic because the doctor said my mitral may have gotten better if we just replaced the aortic but recommended doing both "while we were in there"

Stephen Reeve  Tanya, I had OHS on May24th so I am nine weeks postOp. I am doing really good and will start back to work next week. First 6 weeks I really concentrated on recovery and now I am also doing other stuff around the house. Sign up for Cardiac Rehab. It is a good program. There was a lot of treadmill walking/jogging there. I also live in Texas and it is too hot to run outside. Find an indoor place to exercise after the surgery.

Marie Myers  I had an AVR , aortic root and aneurysm resection Mar 28. The first 2 weeks were uncomfortable, but I would not say painful. I took more Tylenol than oxycodone. I felt good enough go return to work part time in 8 weeks, and I am 63 yo. You will recover even quicker, I bet. My biggest complaints were sore shoulders and back, and exhaustion for 2 weeks. The anxiety factor was tough, but I listened to a lot of soothing meditations on U tube. Best wishes for a smooth journey!

Lora Lee Peterson  Welcome Tanya! I agree this site is so supportive and inspirational. It's been a big help to me! Your symptoms are how I would exactly describe mine, and it's been the last couple of years, now that I look back, that I've felt that way. I've been told that it must be depression, because being tired is not a symptom by itself. I also thought maybe because I'm older that I'm just wearing out. Well it appears that you are a lot younger than me, and you are tired, and I would never suggest that it's depression that is making you tired. I know now that it's symptoms of BAVS. Good luck at your cardiologist appointment!

Tammy Pilcher  Hi Tanya, welcome to the group! I had my bicuspid aortic valve replaced almost 9 months ago. I also got an aortic root enlargement with a Dacron patch. I've known I had a heart murmur since I was 13, but didn't know it was caused by a BAV until 3 weeks before my surgery. I was 50 at the time and had been diagnosed with asthma while pregnant with my oldest son 25 years before. (Now we know the symptoms I was having, shortness of breath, feet and ankle swelling, and terrible migraines were probably from the extra strain on my heart due to my pregnancy. ) But it would be 25 years later before my heart problem would be found and by then my valve had stenosis at a critical level of 0.39cm2. I had noticed the 2 years prior to this being found that I was having increased shortness of breath and chest pains, but I just thought my asthma was getting worse. After my surgery, I was amazed in the difference of how I felt! I'm so thankful there was something to save my life, as well as improve my quality of life! You are welcome to read about my surgery experience in my journal and if I can answer any questions, I will. God bless you!

Ashli Carmona  Hi! I recently joined this group myself. I am currently waiting for the right time for surgery as well. Never knew anything was wrong with me until I was pregnant. I have noticed in this past year my symptoms have gotten worse. I am lime you and it comes and goes randomly. Some days I can run around with my tot and others I do good to put her in her carseat. I mainly have palpitations a lot. I get occasional chest pain but nothing that prevents me from doing things. The palpitations scare me more

Tanya Ammons  Thank you for your responses. Lora Lee, everytime I go to a Dr/ER, including my cardiologist whom I've been seeing for almost 20 years, and even some relatives, I get asked if I'm depressed. I'm certainly not depressed, but I do think that the symptoms we have could lead to depression which in turn would cause us to be even more tired. Not sure, but that's what I tell myself to keep from getting frustrated at the "Are you depressed?" question. ;)

I live in central Tx and the heat and humidity seem to bring me down more so than when it's nice out. I often feel the momma guilt for not being able to take my kids to do outside things during the summer, but I just shake it off and tell myself it is what it is. There are also times when I wonder if the reason I'm so tired is just because I'm trying to keep up with a 6 and 7 year old, and I find myself wondering if my symptoms are even heart related or if it's because I really am just THAT tired, or maybe I'm dehydrated, or maybe other mom's feel the exact same way I do and I'm just lazy. LOL! Good to know I'm not alone. I think I will feel more confident once I chat with my cardiologist. And if he does say we need to move forward with surgery I think I'm ready to just get over with so I can be on my way to recovery and feeling better. Thanks again for the advice! :)

W. Carter  Tanya, I began with all the symptoms you speak of plus not being able to sleep (wheezing for oxygen) when laying down due to fluids in lungs. 3 years later with the help of chf meds and new mechanical valve and aortic vein graft I feel much better. :-) God bless your future!

Jean Raber  I have MVP, am 61, and looking at MV repair at some point (next eval is in September), so my situation is different from yours, but any hot, humid day makes me feel much worse. I was diagnosed with asthmatic COPD due to allergies, so sometimes hard to tell which is worse. I do sleep with the head of my bed elevated, which helps. Welcome to the group!

Mary K  Welcome Tanya, I had your same symptoms. I am five weeks out from an AVR and am so glad that it is behind me. BTW people say stupid things. Ignore them. This site is great because it is people who are walking through this experience together. I think that your attitude is great, and hope that the results of your echo are definitive. Drs keep on telling me that the palpitations (PVC's) are nothing to worry about.

Kelly Weisgarber  Hi Tanya. I only found out in February that I had a bicuspid aortic valve and severe regurgitation. I went to the doc because I was having pvc's and lightheadedness. I'm now in the waiting period, my next echo is in October. Some days I'm short of breath, sometimes I'm tired, some days I feel almost normal. My anxiety level is high, I worry about every little flutter. Good luck and welcome.

Kim Schurman  I had a mechanical aortic valve replaced for unicuspid aortic valve that i was supposedly born with (was told it was bicuspid) and a aortic graft to fix aneurysm about 5 weeks ago. My symptoms were increasing shortness of breath, several episodes where i almost passed out, increasing chest discomfort, increased heart rate of 120-140's, and fatigue with lightheadedness a few months prior to surgery. I am so glad the surgery is over and done with for a long time since the anticipation is the worst. If i were you i would start by getting an opinion from a cardiothoracic surgeon at a big medical center like Cleveland clinic. I did it on my own (my regular cardiologist didnt suggest it and wanted to watch it) and with the more intensive workup in ohio i was found to have more severe disease then originally thought and the surgeon recommended getting the surgery done sooner then anticipated. It was a relief after surgery knowing i wouldnt die from a ruptured aneurysm!

Steven A Husted  HI TANYA I KNOW THIS MAY SOUND CRAZY BUT A LOT OF THOSE SYMTOMS YOU ARE HAVING NOT ALL BUT SOME ARE THE SAME FOR DIABETES MAKE SURE YOU DONT HAVE BOTH AORTIC STENOSIS AND DIABETES I WISH YOU THE BEST AND WELCOME TO OUR COMMUNITY WHAT A GREAT COMMUNITY AND ADAM PICKS BOOK YOU SHOULD READ VERY INFORMATIVE YOUR HEART BROTHER STEVE (POPEYE)

John Jones  Likewise for me Tanya. Some days I was fine and some days I could barely move. I had bicuspid aortic stenosis as well. It seems that the symptoms should always be the same since the valve was always restricted. Oh well. it's fixed now and I am feeling better each day. When I found out what was wrong, I realized I had been dealing with it for several years and just ignored it or wrote it off to other circumstances.

Bob M  Yes, God is good! And yes, miracles just happen, you are a witness! I was asymptomatic until I saw the video of my angiogram ... Yes, blood was going the wrong way through my aortic valve.

Lora Lee Peterson  Hi Tanya, The tiredness I felt from raising two little kids 20 some years ago and working full time and commuting, and the tiredness I feel now, and what I think you are feeling, are two very different kinds of tired. When I was sleep deprived when the kids were little, I had energy early in the morning, but by the time they were in bed at 9 in the winter, my eyelids were heavy, and I fell asleep before the ER intro music was finished playing on Thursday nights. I didn't notice I was tired until I sat down. Safety meetings at work were killers. Now, I feel exhausted when I wake up in the morning, and I find myself feeling like I could sleep for hours more, and honestly, I don't think I'm depressed. There were weeks early after my diagnosis in March that the anxiety may have been making me tired, however later on (in June, I had things to look forward to and enjoyed doing. Feeling exhausted was not one of the things I wanted to feel, but I couldn't stop from feeling that way. It was all I could do to force myself to stay up until midnight the night of my son's wedding, and that is not me, and that day was so perfect that there was no way depression was a factor. I'm convinced my compromised blood flow was making me tired. So, anyway, I hope my input helps you sort out what you are feeling a little bit. I am grateful for your posts, because I am realizing it's not just my mind doing a number on me, and I'm not the only one that feels this way. I'll say prayers for you! I can't imagine feeling like this when my kids were little, because they really need all of your time and energy and organization. I hope you have a good helper!

Adela Morsz  Hi Tanya, I am 19 years old and likely need an intervention becouse of AS.
Could you tell me more about your valvuloplasty, please (durabity, using material, surgeron, recovery). Thank you in advance. Maybe it could be option for me also...
My doctor says that surgery is needed then velocity is 5 - maybe this info would be helpfull for you.