Hi everyone, I've been quiet for awhile. I had my valve surgery at the end of June and now I'm back at work. It's been 10 weeks and I am still tired. I thought ...Read more
Hi everyone, I've been quiet for awhile. I had my valve surgery at the end of June and now I'm back at work. It's been 10 weeks and I am still tired. I thought I would be "better than before"...but the fatigue is crazy. I'm happy that I can now walk up a flight of stairs without stopping and taking a breath, I am happy that I can walk almost a full mile without stopping...but between the fatigue and walking in the humid weather we're having in NY is just very hard for me to deal with. Any advice! Thanks,
Corey Sines Make sure you still consulting with your docs about the fatigue. But everyone is different, it migh ... Read more
Corey Sines Make sure you still consulting with your docs about the fatigue. But everyone is different, it might just take some more time for your energy levels to return than others.
Darlene Smith Kathleen, I'm in New Jersey and walking last night felt like walking in a sauna. I definitely walked ... Read more
Darlene Smith Kathleen, I'm in New Jersey and walking last night felt like walking in a sauna. I definitely walked slower than other nights just because of the weather. I'm tired too, and about 7 weeks post op. I think our bodies are still recovering, but you might mention it to your doctor if it feels debilitating.
Kathleen Mannino Thank you guys! I sent an email to my surgeon about this. I won't see him until early November, howev ... Read more
Kathleen Mannino Thank you guys! I sent an email to my surgeon about this. I won't see him until early November, however, I am seeing my cardiologist next week. I also have a left ventricular hypertrophy , which I wonder if that is adding to the fatigue. What could be done for that? I'm nervous about all this...which I guess is normal considering everything.
Kathleen Mannino Thank you guys! I sent an email to my surgeon about this. I won't see him until early November, howev ... Read more
Kathleen Mannino Thank you guys! I sent an email to my surgeon about this. I won't see him until early November, however, I am seeing my cardiologist next week. I also have a left ventricular hypertrophy , which I wonder if that is adding to the fatigue. What could be done for that? I'm nervous about all this...which I guess is normal considering everything.
Rita Savelis The fatigue stays for a long time. I was grateful to my surgeon for being brutally honest before surg ... Read more
Rita Savelis The fatigue stays for a long time. I was grateful to my surgeon for being brutally honest before surgery. He said "you will be tired for a LONG time".
16 months after surgery, I still get tired on stairs or going uphill. I'm back at dance class but get very tired when there are moments of fast constant movement.
Doctors say I'm fine, so I'm counting on more time.
But I have a hard time saying "better than before".
Hot weather is also not friendly to cardiac patients, so keep that in mind...
Take care, and know that healing can take a long time and your body is working hard to recover!
Kathleen Mannino May I ask everyone, how much time passed from when you presented to your doctor, was diagnosed and ha ... Read more
Kathleen Mannino May I ask everyone, how much time passed from when you presented to your doctor, was diagnosed and had surgery?
Rita Savelis After my heart murmor was discovered I saw a cardiologist for about 6 yrs for regular ultrasounds to ... Read more
Rita Savelis After my heart murmor was discovered I saw a cardiologist for about 6 yrs for regular ultrasounds to see how my valve(s) were evolving. I had no symptoms at that time. When I got my first "symptoms" (tiredness, out of breath on stairs) I was sent to a surgeon to have all tests done to be prepared for when I might need surgery. After that I was seen every 3 months, but the surgeon left it up to me at that point to decide when to have surgery. About a year after symptoms started I opted to have surgery. I ended up having 3 valves worked on (2 replaced, one repaired).
In retrospect I might have waited longer for surgery, but it can be a very hard call for anyone to make because one doesn't want the heart to get irreperable damage and yet rushing into a life with replacement valves can sometimes be put off as well. Patient and doctor usually work together on that decision.
Kathleen Mannino Thank you Rita. I appreciate your answer. It helps. I wonder if others had similar experiences.
Catie B Sorry to hear you're still having so much fatigue, Kathleen. I hope you start to get relief from tha ... Read more
Catie B Sorry to hear you're still having so much fatigue, Kathleen. I hope you start to get relief from that soon and that your cardiologist will be reassuring.
Everyone's journey is so different. You asked about timing. I was diagnosed with a bicuspid aortic valve in my teens, and I'm in my late 50s now. So, there were many years of cardiology appointments. Even now, I'm asymptomatic, but will have surgery soon because of aortic aneurysm. Valve just became severe this year.
Best to you in your journey!
Denise Campbell I didn't feel a normal energy level till about four and half months post op. Don't push yoursel ... Read more
Denise Campbell I didn't feel a normal energy level till about four and half months post op. Don't push yourself so hard.
Darlene Smith Kathleen, I was told I had a heart murmur in 2012 which I initially didn't believe (silly me). I had ... Read more
Darlene Smith Kathleen, I was told I had a heart murmur in 2012 which I initially didn't believe (silly me). I had surgery in July of 2016, so about 4 years from initial diagnosis to surgery.
Cathleen Weed You're in my prayers <3. I'm so glad you listened to the signals your body was giving you. You are a ... Read more
Cathleen Weed You're in my prayers <3. I'm so glad you listened to the signals your body was giving you. You are a very strong person. Did you say you've decided on the bovine valve? I have a bovine (cow) valve. I feel awesome. You'll lead a totally normal life with it. God Bless! xo
Kathleen Mannino Yes..it's bovine. My surgeon believes it is the best choice for me. We agreed. Thanks Cathleen for ... Read more
Kathleen Mannino Yes..it's bovine. My surgeon believes it is the best choice for me. We agreed. Thanks Cathleen for your support. The surgeon gave me the pros and cons of having the surgery..but in my case it's best to get it done or I can face an visit to the Pearly Gates a bit early. LOL
Cathleen Weed I love how proactive you have been! 💛 I'm glad you are facing it head on ❤.
Emily Rowley That is great you've made the decision that's best for you Kathy ☺ It's completly understandle you ... Read more
Emily Rowley That is great you've made the decision that's best for you Kathy ☺ It's completly understandle you are tired and exhausted, it's alot to take it. Keep on smiling 😘
Kathleen Mannino Thank you everyone. I'm scared...but this has to be done. I'm running out of energy. So darn tired. I ... Read more
Kathleen Mannino Thank you everyone. I'm scared...but this has to be done. I'm running out of energy. So darn tired. I'm worried about the risks to my kidneys, blood, and strokes. Probably pre-op nerves I guess. I can't do anything but sit and think. Well it's in God's hands..it is what it is. I really hope I get my energy back.
Ron Broadhead Hope all continues to go as well as can be Kathleen. You have a really nice attitude about this, whic ... Read more
Ron Broadhead Hope all continues to go as well as can be Kathleen. You have a really nice attitude about this, which is half the battle. The Pearly Gates can wait for a few decades. Oh - and I really like my "moo valve". Works great and life is excellent with it. I've come to regard it as a true gift.
Tomorrow morning I meet the man who will open my chest to work on my bicuspid calcified aortic valve. I pray that the surgery will happen soon. The stress ...Read more
Tomorrow morning I meet the man who will open my chest to work on my bicuspid calcified aortic valve. I pray that the surgery will happen soon. The stress and waiting aniexty is getting to me. My lungs are great but breathing is difficult.
Franklin Wyrick You will do well, Kathleen. I had a bicuspid aortic valve replaced and had a part of my aorta replac ... Read more
Franklin Wyrick You will do well, Kathleen. I had a bicuspid aortic valve replaced and had a part of my aorta replaced to fix an aneurysm two weeks ago and I am now walking two miles a day and getting stronger all the time. Its a slow process, but I know I will be back at 100 per cent soon and so will you.
Shannon Sullivan I agree with you about the stress and anxiety while waiting. Just try to keep yourself busy. Do som ... Read more
Shannon Sullivan I agree with you about the stress and anxiety while waiting. Just try to keep yourself busy. Do some calming self talk. Everything will go ok.
Alan Lonsberry The waiting is very tough, I know what you are feeling. I am 7 days post op now and it seems like ... Read more
Alan Lonsberry The waiting is very tough, I know what you are feeling. I am 7 days post op now and it seems like a dream. Hang in there, it will be done soon, and you will be posting updates. God bless.
Alan Lonsberry The waiting is very tough, I know what you are feeling. I am 7 days post op now and it seems like ... Read more
Alan Lonsberry The waiting is very tough, I know what you are feeling. I am 7 days post op now and it seems like a dream. Hang in there, it will be done soon, and you will be posting updates. God bless.
Wanda Mroz Been there.... Try to take your mind in other directions. Best of luck tomorrow!💞
Petey Bello Hang in there! The stress of waiting is tough...
Good luck!
Kathleen Mannino Thank you all. You all are so brave and amazing people. I hope I can be as brave as you next Thursday ... Read more
Kathleen Mannino Thank you all. You all are so brave and amazing people. I hope I can be as brave as you next Thursday. God bless you all.
Wanda Mroz You are stronger than you think! Believe that!💞
My GP wanted to see me soon after my emergency room visit...which basically determined nothing. Just walking from the parking lot to the office was awful. I ...Read more
My GP wanted to see me soon after my emergency room visit...which basically determined nothing. Just walking from the parking lot to the office was awful. I had to stop many times to catch my breath. By the time I got to the office I thought I was going to pass out. Thank God the nurse was there and he saw how sick I was. The doc saw me and after a rather normal EKG, tried to convince me nothing was wrong. She asked me to take a short walk with the nurse..which I did. My chest ached and I was dizzy and short of breath. My doc called the cardiologist and he said to get me admitted. My doc didn't think there was anything wrong...but I went. Turns out..I needed a cartherization. The dept couldn't take me to the next afternoon, however. Once in the Cath lab the doc said that he doesn't expect to find anything since my echo and keg show mild to moderate aortic stenosis. Well..in I go for the Cath and their jaws basically dropped when they saw I have severe stenosis and must have a replacement asap. See..echo are not all that accurate. I am a walking time bomb. I'm no we home waiting for an appointment for a TEE, which makes me nervous because I gag. After that is done...then surgery. What an adventure. Has anyone had this surgery at Montifiore in the Bronx? If so..how was it and the care while recouping?
Anne Walpole I had a TEE. Try not to feel too stressed about it. When I had it, they gave my drugs to relax me and ... Read more
Anne Walpole I had a TEE. Try not to feel too stressed about it. When I had it, they gave my drugs to relax me and also something to numb my throat. It wasn't really uncomfortable because I was pretty out of it from the meds. I don't recall feeling any gag reflex.
Kate Watson This is a good reminder to listen to our bodies above all and push for answers if you're being blown ... Read more
Kate Watson This is a good reminder to listen to our bodies above all and push for answers if you're being blown off by your doctor. Glad this was found now. I don't think you need to worry about gagging with your TEE because you won't remember a thing with the sedation. Best wishes!
Petey Bello Jeez, good luck to you Kathleen...glad you got thoroughly checked out!
Denise Campbell Yes. They will numb your throat and relaxing drugs. You won't remember a thing or be aware of it g ... Read more
Denise Campbell Yes. They will numb your throat and relaxing drugs. You won't remember a thing or be aware of it going down your throat.
Nap Garcia I had a TEE first, then my cardiologist pushed me to get a heart cath but my TEE results showed no ev ... Read more
Nap Garcia I had a TEE first, then my cardiologist pushed me to get a heart cath but my TEE results showed no evidence of stenosis. Though a heart cath may tell more, then why would they order a TEE next? I don't understand the inconsistency with what kind of test is ordered, and what order to have them done in. Seems each cardio has their own preference.
Wanda Mroz I had a tee and was totally sedated at request... They gave me the choice and I chose sedation. Neve ... Read more
Wanda Mroz I had a tee and was totally sedated at request... They gave me the choice and I chose sedation. Never felt a thing. I too gag and I just didn't need the stress if there was another option.
Kathleen Mannino Thanks everyone. I am relieved to know that I won't have to worry about gagging. I will say that I'm ... Read more
Kathleen Mannino Thanks everyone. I am relieved to know that I won't have to worry about gagging. I will say that I'm concerned about the stress this whole thing puts on family members. I don't want to see my husband in the cardio wing with me. I can't wait for this to be over.
Emily Rowley Oh no that is terrible your Doctor would not listen esp when you can feel in yourself there is someth ... Read more
Emily Rowley Oh no that is terrible your Doctor would not listen esp when you can feel in yourself there is something wrong, another reason why second opionins are worthwhile. My original Cardiologist didn't believe there was anything wrong with my heart and wanted to wait-I got second opionin & turned out servere reguritation+needed OHS surgery asap. I'm glad you had the Cath, your health is so important! They heavily sedate you for a TEE, you wake up and get to eat 😁 Look forward to hear updates from you. What valve might you go with? I know it is a stressful time, try to take time for yourself to relax hun.
Kathleen Mannino Nor sure which valve yet. I have to say..the longer I wait the more anxiety builds. I cry sometimes. ... Read more
Kathleen Mannino Nor sure which valve yet. I have to say..the longer I wait the more anxiety builds. I cry sometimes. I wonder how long I will need to wait for the actual surgery. I also hope Montifiore Moss Campus is ok. Anyone been there?
Barbara Laurie Kathleen, if you can't get in asap try another place that your insurance covers, your Cardiologst cou ... Read more
Barbara Laurie Kathleen, if you can't get in asap try another place that your insurance covers, your Cardiologst could help. And hang in there, crying is normal! ❤️🐶❤️
Kathleen Mannino Thanks Barbara. I just received a call that the TEE will be tomorrow. Wish me luck.
Wanda Mroz If your valve needs replacing soon they will get you in asap. Wishing you well tomorrow. Hugs and p ... Read more
Wanda Mroz If your valve needs replacing soon they will get you in asap. Wishing you well tomorrow. Hugs and prayers.
Kathleen Mannino Thanks everyone. I now have a bovine aortic valve.
Emily Rowley It's great to hear an update from you 🤗 How are you feeling and how did the surgery+decision of va ... Read more
Emily Rowley It's great to hear an update from you 🤗 How are you feeling and how did the surgery+decision of valve go? 💗 Sending my well wishes to you.
Saw my GP who wanted to check on my 1st ER visit and she told me to hight ail it to the ER. An angioplasty is being planned for tomorrow. I keep losing my ...Read more
Saw my GP who wanted to check on my 1st ER visit and she told me to hight ail it to the ER. An angioplasty is being planned for tomorrow. I keep losing my breathe when I walk and have a dull ache on my left chest. So it begins.
Steven A Husted yes it is a ohs journey but we can do it and the journey goes on there are so many stories on this si ... Read more
Steven A Husted yes it is a ohs journey but we can do it and the journey goes on there are so many stories on this site to lift us up and encourage us what a blessing adam is to us all
Wanda Mroz Yes you can do it! All doable. You are stronger than you think!
Dr. Usman Hasan https://www.facebook.com/profile.php?id=100012141525553
Saw my GP who wanted to check on my 1st ER visit and she told me to hight ail it to the ER. An angioplasty is being planned for tomorrow. I keep losing my ...Read more
Saw my GP who wanted to check on my 1st ER visit and she told me to hight ail it to the ER. An angioplasty is being planned for tomorrow. I keep losing my breathe when I walk and have a dull ache on my left chest. So it begins.
Wound up in the ER yesterday due to chest pains. Had blood test, monitors, etc. I was told I was panicked. This is what I'm worried about. .niw every chest ...Read more
Wound up in the ER yesterday due to chest pains. Had blood test, monitors, etc. I was told I was panicked. This is what I'm worried about. .niw every chest pain I will think it's the beginning of an attack. I was dizzy and lightheaded. Now I am afraid I won't take chest pain seriously.
Wanda Mroz Oh honey take deep breaths and try to calm yourself. I've been where you are. I had to have OHS for ... Read more
Wanda Mroz Oh honey take deep breaths and try to calm yourself. I've been where you are. I had to have OHS for valve repair and I was terrified to say the least. It's hard to tell someone to be calm because although many people told me I'd be fine, I was still scared. On the other hand this site has many many people with the same issues, feelings, and eventual positive outcomes. Welcome to the site. Read the stories, and ask questions. Someone will have the answer. Stay positive. There is always a window of opportunity when surgery is recommended before things get worse and your doctors will discuss thus with you. Wishing you the best. 💞
Elaine Cutri Well said Wanda. Thinking calming thoughts for you Kathleen!
Kathleen Mannino Thank you Wanda and Elaine. I guess I'm in good company...but the idea of having someone physically i ... Read more
Kathleen Mannino Thank you Wanda and Elaine. I guess I'm in good company...but the idea of having someone physically in my heart scares me so much. I hope I can survive the wait.
Wanda Mroz Just remember to breathe and be positive. I also took Xanax at night to help me sleep and had a mass ... Read more
Wanda Mroz Just remember to breathe and be positive. I also took Xanax at night to help me sleep and had a massage a couple of times to calm me. It helped. It's going to be okay and you'll be fine. Hugs.💞
Kathleen Mannino Thank you Wanda. I'm waiting g to hear from my GP. I have a feeling she's planning some calming meds. ... Read more
Kathleen Mannino Thank you Wanda. I'm waiting g to hear from my GP. I have a feeling she's planning some calming meds. Lol
John White I have the same thing and I take Ativan. It really helps me. Ask your GP and good luck!
Still not sure how to use this site effectively, but please read My Story. Thanks.
Cathleen Weed Hi Kathleen :) Sorry to hear you are receiving this news. You will definitely have more answers after ... Read more
Cathleen Weed Hi Kathleen :) Sorry to hear you are receiving this news. You will definitely have more answers after you meet with the cardiologist. This is a progressive disease so it's possible that your valve has worsened in the last year. I'm certain that your numbers will show a change. There are pretty significant guidelines as to when surgery is indicated. You won't be encouraged to do it "too soon" or "too late". It will be based both on your symptoms and your clinical numbers. It's a pretty precise process. When do you meet with the cardiologist? Get a copy of your records and all tests from last year and this year to take for another opinion if that's what you decide to do. I saw that you are a breast cancer survivor...there are others on this site that received radiation for different types of cancer as well. Hopefully they will see your post. :)
Elaine Cutri Welcome to the group. You may not be jumping the gun. Don't worry about not having all the answers (o ... Read more
Elaine Cutri Welcome to the group. You may not be jumping the gun. Don't worry about not having all the answers (or questions) yet. Hope we can be of help.
Petey Bello Good luck to you Kathleen & welcome to the group! There are a lot of wonderful people in this group & ... Read more
Petey Bello Good luck to you Kathleen & welcome to the group! There are a lot of wonderful people in this group & we are all here to support each other!
16 months after surgery, I still get tired on stairs or going uphill. I'm back at dance class but get very tired when there are moments of fast constant movement.
Doctors say I'm fine, so I'm counting on more time.
But I have a hard time saying "better than before".
Hot weather is also not friendly to cardiac patients, so keep that in mind...
Take care, and know that healing can take a long time and your body is working hard to recover!
In retrospect I might have waited longer for surgery, but it can be a very hard call for anyone to make because one doesn't want the heart to get irreperable damage and yet rushing into a life with replacement valves can sometimes be put off as well. Patient and doctor usually work together on that decision.
Everyone's journey is so different. You asked about timing. I was diagnosed with a bicuspid aortic valve in my teens, and I'm in my late 50s now. So, there were many years of cardiology appointments. Even now, I'm asymptomatic, but will have surgery soon because of aortic aneurysm. Valve just became severe this year.
Best to you in your journey!