Hello my heart warriors! I’m grabbing a few moments and wanted to reach out after a very big year full of change. I honestly don’t know where to start. ...Read more
Hello my heart warriors! I’m grabbing a few moments and wanted to reach out after a very big year full of change. I honestly don’t know where to start. I celebrated 6 years since my aorta repair and aortic valve repair Feb. 22. I often think back to the long length of time I was in the hospital due to severe pericardial effusion/cardiac tamponade, and so thankful to the ways this past year has shown me I am stronger than I ever imagined. My two daughters and I sold our house and moved just into the next town. Good lord, what an undertaking! I am also back to work as a Kindergarten Teacher Assistant and loving it! I was a school counselor for 10 years before children, and have decided to work on getting my teaching license. Not going to lie, becoming a single parent, working full time, grad school work has been incredibly demanding. All the while, trying to remember to take care of myself. I’m back at going to Cleveland Clinic twice a year to observe the newer aortic enlargement next to my valve. They are trying to time it to do replacement and fix the aorta at the same time… still feel uneasy knowing there’s more to be done and gone through with my heart. I’ve have made strides in not allowing it to consume me. I pop on and read your posts and it fills me with such strength and perseverance to hear your stories. Please keep sharing!
Susan Lynn Shannon - It's great to hear from you. Happy belated anniversary!!! Sounds like you have a full, e... Read more
Susan Lynn Shannon - It's great to hear from you. Happy belated anniversary!!! Sounds like you have a full, exciting life with your daughters - good for you! Best of luck with your education and continued success in your new career. All the best!
Rose Madura Shannon, glad to see a post from you. You are am amazing woman and a string heart warrior.
Alina Wilson So good to hear from you, Shannon! Hang in there, friend! You can move mountains! 😘💜
So glad to hear from you Shannon, you are a strong woman and have come a long ways. Congratulations! ... Read more
So glad to hear from you Shannon, you are a strong woman and have come a long ways. Congratulations! I keep you in my prayers every day and often wondered how you were doing. Great post, don’t stop writing when you can. God bless you
Let’s talk tattoos… at almost 48 years old, after experiencing so many challenges these past several years, I’d like to get a discreet tattoo. It would ...Read more
Let’s talk tattoos… at almost 48 years old, after experiencing so many challenges these past several years, I’d like to get a discreet tattoo. It would be my first. I am terrified of endocarditis. Granted, I had valance repair and not replaced, I am always anxious of the possibility of getting sick and causing damage to the heart. What has been anyone’s experience? Thank you!
Richard Munson I got mine before the surgery because taking any blood thinner and tattoo
Is a no no. I got a beauty ... Read more
Richard Munson I got mine before the surgery because taking any blood thinner and tattoo
Is a no no. I got a beauty on my forearm. It says oldsmobile in the correct logo
Shannon Gray Love it! And smart to have done it before surgery. I’m 6 years out from aneurysm replacement and ao ... Read more
Shannon Gray Love it! And smart to have done it before surgery. I’m 6 years out from aneurysm replacement and aortic valve repair.
Richard Munson My only regret was i also wanted an oldsmobile rocket with red flames on my other arm which i should ... Read more
Richard Munson My only regret was i also wanted an oldsmobile rocket with red flames on my other arm which i should have done then but alas and alack, my valve surgery and eliquis got in the way. But, there is a glimmer of hope if my a fib was beaten by my maze procedure i might get off the eliquis. Lots of ifs. Never forget walking in the door with my brand new tattoo and my wife asking me if at 78 i had all my marbles. Of course she said the same thing when i bought the car. Ha.
Richard Munson And by the way, no discreet. I want pictures so display it prominently. Lol.
Richard Munson Shannon, i posted my tattoo in my pictures for you to be jealous over, It will be my identifying feat ... Read more
Richard Munson Shannon, i posted my tattoo in my pictures for you to be jealous over, It will be my identifying feature when they find me in the trash someday.
Deena Z Richard, you kept us all young!! Shannon, enjoy whatever tattoo you might get!
Rita Savelis I so want a tattoo too but anticoagulants make it all more difficult. I hear one needs to use much mo ... Read more
Rita Savelis I so want a tattoo too but anticoagulants make it all more difficult. I hear one needs to use much more ink because one bleeds more. And the tattoo artist needs to be familiar with this type of client (a bleeder). And cardiologists will shake their heads. So I have no experience but I say GO for it Shannon. You'll be fine. And you deserve a tattoo! Take care, and hope you are feeling okay.
Richard Munson I returned to my tattoo parlor to discuss another tattoo after reading shannons post. Why? Because i ... Read more
Richard Munson I returned to my tattoo parlor to discuss another tattoo after reading shannons post. Why? Because i want that oldsmobile rocket . He said a couple of things: blood thinners cause the ink to run causing a blurry outline and he would be nervous about doing it. Keep in mind, that is my person. Another may feel differently. I also have older skin than shannon, so that might make a difference. Tattoo parlors like heart surgeons, another opinion never hurts. Maybe hurts is a poor choice of words. I have answered the question a bunch of times. Did it hurt? Some areas of the body are more sensitive than others. My person put a numbing liquid on my skin knowing i am a baby. If you put a bunch of beetles in a bottle and turned it upside down against your skin, that was what i think it felt like. It is definitely easier than heart surgery.
Shannon Gray Any information on endocarditis, Richard? I just take a baby aspirin, so I’m not too worried about ... Read more
Shannon Gray Any information on endocarditis, Richard? I just take a baby aspirin, so I’m not too worried about the bleeding… just bacteria causing damage to the heart.
Richard Munson Shannon, i am no expert of course but my tattoo guy was very cleanliness conscious. He even had an au ... Read more
Richard Munson Shannon, i am no expert of course but my tattoo guy was very cleanliness conscious. He even had an autoclave machine for his instruments of torture. Lol. I would be more concerned about bacteria in your mouth than your discreet location. Hopefully not too discreet. I enjoy showing off my oldsmobile at car shows. Most folks look at me like my deck is short a few cards but so what. If its too discreet, no one but you will ever see it. I also came very close to piercing my ear at the same setting but thought my wife might have me committed.
Richard Munson An afterthought. Before you get your teeth cleaned i assume you take an antibiotic? Can you do that b ... Read more
Richard Munson An afterthought. Before you get your teeth cleaned i assume you take an antibiotic? Can you do that before a tattoo visit? I am told that most bacteria that enter your body from a cut or scratch were already on your skin to begin with. If you worry about every little cut or abrasion on your body affecting your heart you will end up like the bubble boy on seinfeld.
Rita Savelis Richard you are a breath of fresh air. Thanks for being here. And Shannon, you are amazing.
Hello heart family! Although I check this blog every day, I just haven’t been at a place to post. Today is a new day and I wanted to share some updates. I ...Read more
Hello heart family! Although I check this blog every day, I just haven’t been at a place to post. Today is a new day and I wanted to share some updates. I am 5 1/2 years out from bicuspid valve repair and ascending aorta replacement. I have Turner Syndrome, in the family of Marfans, etc., where we’re more susceptible to aortic aneurysms. Last winter my local cardiologist wanted an updated MRI/MRA, especially since the possibility of another aneurysm could happen. Indeed, there was growth and measurements were not favorable. I went to Cleveland Clinic beginning of June and spent all day on testing and seeing my cardiologist, my surgeon, and also a new dr who works with genetic/heart anomalies. Conclusion: yes, the section of the aorta left ( right off of the valve) is enlarged, however the tubing from the graft is right above, so therefore if there was a tear/dissection… there isn’t much tissue to tear. Also, I was extremely sick after surgery, due to pericardial effusion. The scar tissue that built up around that area is extensive and like a glue, holding everything together. No surgery at this time, but have increased monitoring to every 6 months. I’ll take it!
My girls and I have moved twice since June, finally settling into our new place and a new rhythm. My husband and I are still separated, and although reconciliation is what I long for, I am accepting it doesn’t look like it will happen. I was a fear monger leading up to surgery and also all these years after, so scared to do anything, always waiting for the next shoe to drop. Looking back on what I’ve been through these past 5.5 years, but mostly these past 8 months… I am overwhelmed by the amount of growth I’ve gained in “life.” Sometimes it truly takes some really hard lessons in order to see the light and beauty. God bless!
Rose Madura Good to hear from you Shannon. You are a tough heart warrior. Life is tough but you have proven tha ... Read more
Rose Madura Good to hear from you Shannon. You are a tough heart warrior. Life is tough but you have proven that you can overcome anything. Godspeed!
Great to hear from you Shannon. Glad you are in a new place (home) and in life. God bless you and be ... Read more
Great to hear from you Shannon. Glad you are in a new place (home) and in life. God bless you and be well dear heart warrior. ❤️🙏
Susan Lynn Shannon - It's great to hear from you! Thanks for the update. You have certainly been through a lot ... Read more
Susan Lynn Shannon - It's great to hear from you! Thanks for the update. You have certainly been through a lot and have made the best out of your situation. I literally got chills reading your words about the growth you've gained from the hard lessons. Isn't that the truth??? I always say the untended benefit that comes at no extra charge with heart surgery is a greater appreciation for everything we do have! Life isn't always perfect, but it is good! Thanks for your inspirational post!
MaryAnne Jardis Shannon...I will keep you in my prayers and know the you are strong and will get through this. God wi ... Read more
MaryAnne Jardis Shannon...I will keep you in my prayers and know the you are strong and will get through this. God will give you the strength..never lose your faith!
Civita Fahey ITs good hear from you Shannon. you have been through a lot and hopefully things will get better soo ... Read more
Civita Fahey ITs good hear from you Shannon. you have been through a lot and hopefully things will get better soon. Life is never easy..
Civita Fahey MaryAnne how are you? hope your summer is going well.. and all is ok.. we should get together for lu ... Read more
Civita Fahey MaryAnne how are you? hope your summer is going well.. and all is ok.. we should get together for lunch before they shut us down again..
Lilly Black Hi, Shannon. Thank you for sharing! I'm sorry to hear about the break up of your marriage. I am sur ... Read more
Lilly Black Hi, Shannon. Thank you for sharing! I'm sorry to hear about the break up of your marriage. I am sure it has been hard on you and your family. Been there, done that! my son has been through a lot and now he is 40 years old, married, but has no children. Take care of you! you are #1 and your kids are relying on you. I wish you an easier road ahead, good health and good luck! it's been really tough these days with Covid and everything that is going on around us. Take care and thanks for reaching out :)
Shannon Gray Oh, it has been such a beautiful thing to hear from so many of you! You all hold a very special place ... Read more
Shannon Gray Oh, it has been such a beautiful thing to hear from so many of you! You all hold a very special place in my heart. Sending everyone wishes for continued good health and peace with whatever lies ahead. God bless!
Patsy Stewart Shannon, I’m so glad you updated about your life. I truly had been thinking about you for days befo ... Read more
Patsy Stewart Shannon, I’m so glad you updated about your life. I truly had been thinking about you for days beforehand. I’m sorry life has been so hard for you. I pray that you have brighter days ahead and that your heart is happy. Enjoy those beautiful girls and try with all of your might to press forward. You are special!~❤️
Hello heart family! Although I check this blog every day, I just haven’t been at a place to post. Today is a new day and I wanted to share some updates. I ...Read more
Hello heart family! Although I check this blog every day, I just haven’t been at a place to post. Today is a new day and I wanted to share some updates. I am 5 1/2 years out from bicuspid valve repair and ascending aorta replacement. I have Turner Syndrome, in the family of Marfans, etc., where we’re more susceptible to aortic aneurysms. Last winter my local cardiologist wanted an updated MRI/MRA, especially since the possibility of another aneurysm could happen. Indeed, there was growth and measurements were not favorable. I went to Cleveland Clinic beginning of June and spent all day on testing and seeing my cardiologist, my surgeon, and also a new dr who works with genetic/heart anomalies. Conclusion: yes, the section of the aorta left ( right off of the valve) is enlarged, however the tubing from the graft is right above, so therefore if there was a tear/dissection… there isn’t much tissue to tear. Also, I was extremely sick after surgery, due to pericardial effusion. The scar tissue that built up around that area is extensive and like a glue, holding everything together. No surgery at this time, but have increased monitoring to every 6 months. I’ll take it!
My girls and I have moved twice since June, finally settling into our new place and a new rhythm. My husband and I are still separated, and although reconciliation is what I long for, I am accepting it doesn’t look like it will happen. I was a fear monger leading up to surgery and also all these years after, so scared to do anything, always waiting for the next shoe to drop. Looking back on what I’ve been through these past 5.5 years, but mostly these past 8 months… I am overwhelmed by the amount of growth I’ve gained in “life.” Sometimes it truly takes some really hard lessons in order to see the light and beauty. God bless!
http://2207941.mediaspace.kaltura.com/media/t/1_8vtufon4/70471861?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+05-11-21&utm_content=feature+cta&mkt_tok=NDM0LVBTQS02MTIAAAF8-mEmt_S-YbFdoMOiHOdhFfnn1PlkndZtVKe1FIAEw_m3OMriVRU7EcWLiR0u4urAzPQil_peTxVccZfKARL8KGCEdIx3HEZS_goK0HHkutG24_mu ...Read more
http://2207941.mediaspace.kaltura.com/media/t/1_8vtufon4/70471861?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+05-11-21&utm_content=feature+cta&mkt_tok=NDM0LVBTQS02MTIAAAF8-mEmt_S-YbFdoMOiHOdhFfnn1PlkndZtVKe1FIAEw_m3OMriVRU7EcWLiR0u4urAzPQil_peTxVccZfKARL8KGCEdIx3HEZS_goK0HHkutG24_mu
Very interesting information.
The ACC/AHA released new valve guidelines. Dr. Lars Svensson and Dr. Marc Gillinov talk about highlights addressing management of patients with valvular heart disease including TAVR (TAVI); valve surgery; timing of treatment, valve choice, valve repair, surgical approach, and how the guidelines address the aorta and the tricuspid valve. • Read the Valve Guidelines at https://jamanetwork.com/journals/jama/fullarticle/2773120 • Perspectives on the 2020 Acc/AHA Guideline for Valvular Heart Disease; Focus on the Mitral Valve: https://consultqd.clevelandclinic.org/perspectives-on-the-2020-acc-aha-guideline-for-valvular-heart-disease-focus-on-the-mitral-valve/ • Perspectives on the 2020 Acc/AHA Guideline for Valvular Heart Disease; Focus on the Aortic Valve: https://consultqd.clevelandclinic.org/perspectives-on-the-2020-acc-aha-guideline-for-valvular-heart-disease-focus-on-the-aortic-valve/ Learn about the Cleveland Clinic Valve Center https://my.clevelandclinic.org/departments/heart/depts/valve-center
Susan Lynn Thanks for sharing! How have you been, Shannon?
Shannon Gray You are so thoughtful to ask... thank you. Hard days, to be honest. So much happening at once. Trying ... Read more
Shannon Gray You are so thoughtful to ask... thank you. Hard days, to be honest. So much happening at once. Trying to hold in there and find the beauty in all of it.
Susan Lynn Shannon - I think of you often. You'll get through whatever is ahead. There are so many good things ... Read more
Susan Lynn Shannon - I think of you often. You'll get through whatever is ahead. There are so many good things awaiting you. You've got exactly the perfect attitude - there is beauty all around us. Even our toughest days have something to offer. Stay positive and please stay in touch!
Shannon, so glad you are holding up. I keep you in my prayers all the time. You are in God’s hands, ... Read more
Shannon, so glad you are holding up. I keep you in my prayers all the time. You are in God’s hands, stay faithful and hopeful. God bless you
Sue Maize Hi Shannon, Just reading this in Jan 2024, and was struck by one of the last things the doctor on ... Read more
Sue Maize Hi Shannon, Just reading this in Jan 2024, and was struck by one of the last things the doctor on the left said—that bicuspid valves are generally not suitable for TAVR and that there is an increased risk of stroke. I don’t know how well your cardiac surgeons/cardiologists in the US are informing you all, but up here, I have not been given even a small fraction of all the info I would like to have before making this life altering decision as to which valve to get. I’m so incredibly grateful to you and others for posting things like this! Knowledge is power, especially when it comes to your health! Thank you! ❤️
Disappointing news. On a whim, my local cardiologist wanted me to get an updated MRA, just to check out my aorta. I had my bicuspid valve repaired and my ascending ...Read more
Disappointing news. On a whim, my local cardiologist wanted me to get an updated MRA, just to check out my aorta. I had my bicuspid valve repaired and my ascending aorta replaced due to an aneurysm in 2016. I received a call the day after my MRA and he shared that there has been growth, dilation, of the aortic root and it is concerning. I already had an appointment with a pediatric cardiologist who specializes with heart abnormalities from genetic conditions like Marfans ( I have Turner Syndrome). He is concerned and the calculation of size is elevated risk of dissection. He’s forwarding my info to Cleveland Clinic, where I had my surgery, and I am feeling like the ground has opened up and swallowed me whole. I just can’t go through this again. My husband and I have recently separated, and to think of even more “heartache”, I just can’t bring myself to think about going through this again. Truly shocked and at a loss. That ticking time bomb feeling has come back with a vengeance.
Marie Myers I am so sorry that you got this news, Shannon. I can only imagine your shock and disbelief! Do you ha ... Read more
Marie Myers I am so sorry that you got this news, Shannon. I can only imagine your shock and disbelief! Do you have any family or friends to lean on during this time?
Rose Madura Oh Shannon! This is terrible news. I'm so sorry. The thought of having another surgery when your ... Read more
Rose Madura Oh Shannon! This is terrible news. I'm so sorry. The thought of having another surgery when your emotions are like this makes me really feel for you. You'll need lots of support, as you know, for surgery and hope you find a trusted friend or family member to be by your side. I will pray for you to find peace in this situation.
Alina FH Oh, my dear friend! My heart breaks for you reading this this morning. I am so sorry. All I can say i ... Read more
Alina FH Oh, my dear friend! My heart breaks for you reading this this morning. I am so sorry. All I can say is that I have seldom met people as strong as you. Take comfort in knowing that and I know you will pull through this. Let me know if I can send/ do anything. Gentle hugs to you and you’re in my thoughts now more than usual. 💕🤗💕
Civita Fahey Shannon, I'm so sorry you have to go through this again so soon. But think positively and that this b ... Read more
Civita Fahey Shannon, I'm so sorry you have to go through this again so soon. But think positively and that this by chance MRA may have saved your life. I will pray for you.. We will all go through this again at some point but it is devastating when we get the news. Stay Strong!
LINDA ROBERTS My heart goes out to you. I keep hoping it would not require open heart surgery. I read that they ha ... Read more
LINDA ROBERTS My heart goes out to you. I keep hoping it would not require open heart surgery. I read that they have made advances in thoracic aorta surgery that sometimes they can do the repair without using open heart surgery at the Cleveland Clinic. Sure wish that would be true but guess it is still in its infancy in that arena. So sorry to hear that news. Stay strong.
Rita Savelis Oh Shannon. This is terrible. You don't deserve this. It shouldn't be happening. Thinking of you and ... Read more
Rita Savelis Oh Shannon. This is terrible. You don't deserve this. It shouldn't be happening. Thinking of you and of how much you helped me. Wish I could hug you.
Susan Lynn Shannon - I am so sorry to read your news. Take it one day at a time. Whatever is ahead of you, you ... Read more
Susan Lynn Shannon - I am so sorry to read your news. Take it one day at a time. Whatever is ahead of you, you will get through it and we'll help you. You have a entire cheering squad here for you - we heart warriors stick together!
Shannon Gray Your thoughtful words mean a great deal... thank you! Truly.
Shannon, this is a very hard news to take. We don’t know why sometimes things happen, but know that ... Read more
Shannon, this is a very hard news to take. We don’t know why sometimes things happen, but know that we will be praying for you to get through whatever comes your way. May God give you strength and courage. Blessings
Patsy Stewart Shannon, I keep coming back to give you some words of encouragement, and I truly don’t know how to ... Read more
Patsy Stewart Shannon, I keep coming back to give you some words of encouragement, and I truly don’t know how to say what I feel other than I’m sorry. You have a big burden on your shoulders, but you can do this. Many times when I’ve been at the end of my rope, all I could do was whisper the name of Jesus over and over and over again. Just saying His name brings a calmness and a hope that I can’t explain. When things become too hard for you to bear, say His name. I’ve thought of you for days and I’ll continue to pray for you and carry you in my heart.
5 years ago, today. What a wild ride it’s been. So much has happened these past five years, most of which involved loss, and now separating from my husband. ...Read more
5 years ago, today. What a wild ride it’s been. So much has happened these past five years, most of which involved loss, and now separating from my husband. It has actually taken me this long to stop living in fear and waiting for the next hard thing. I See now that each struggle has led me to become stronger and braver than I ever thought I could be. So here it is, 5 years later.
Civita Fahey Happy Anniversary Shannon.. its been a rocky road at times and its good to hear that you are on the r ... Read more
Civita Fahey Happy Anniversary Shannon.. its been a rocky road at times and its good to hear that you are on the right track
Susan Lynn Shannon - Happy 5th Anniversary! I am sorry to hear that you and your husband are separating, but yo ... Read more
Susan Lynn Shannon - Happy 5th Anniversary! I am sorry to hear that you and your husband are separating, but you will get through it - you're a heart warrior after all! That's what we do - we get through tough times! Believe that this is the path you were meant to take and that there are great things ahead of you! There's lots of life left to be enjoyed! You go, Girl!
I would love to have a discussion and experiences from those on Hormone Replacement Therapy. Sorry men... keep on scrolling, but would love any insight if ...Read more
I would love to have a discussion and experiences from those on Hormone Replacement Therapy. Sorry men... keep on scrolling, but would love any insight if you have any.I have a genetic disorder that basically kept my body in menapause. I started some hormone treatment at 13, and have experienced the range of offerings. I’m 47 and in need of help in many ways with increasing HRT. I am
concerned because of the risk of stroke for women in HRT, due to that estrogen coagulates your blood, plus after having aortic replacement/aortic valve repair. I would love info from any woman who is on HRT and how they’re managing. Did you stop after surgery? Is it just to help with menopausal symptoms? And Adam, is this something that has been discussed/talked about before? Thanks!
Marie Myers I had been on bioidentical estrogen cream since age 55 ish, and am 67 now. I was off it about 2 weeks ... Read more
Marie Myers I had been on bioidentical estrogen cream since age 55 ish, and am 67 now. I was off it about 2 weeks around my surgery, which was almost 4 years ago. I take the progesterone by mouth at night to try to help with sleeping. Both my internal medicine doc and cardiologist know I am on it, and neither one seemed concerned. I review it every year when I see them, and if/when either says get off it, I will. Would be interesting to see what others say.
Shannon Gray Thank you, Marie. I really appreciate. That’s great news with regard how well you’ve been doing! ... Read more
Shannon Gray Thank you, Marie. I really appreciate. That’s great news with regard how well you’ve been doing! I need some major overhaul.
Marie Myers I forgot to mention, the HRT did help me with the hot flashes. Sleeping has unfortunately gotten wors ... Read more
Marie Myers I forgot to mention, the HRT did help me with the hot flashes. Sleeping has unfortunately gotten worse through the years regardless of the HRT. I found sublingual melatonin and tryptophan help a bit.
I still take a baby aspirin daily since my AVR and aneurysm resection, and I try to really stay hydrated during the day to lessen the chance of clots. I am still pretty active, though I can tell I am slowing down a bit..I know what you mean about a major overhaul! With Covid, nothing is really “normal”, and everything is an adjustment these days...
Lynn Loudermilk The whole time of Perimenopause I didn't use anything extra for help. I had terrible hot flashes but ... Read more
Lynn Loudermilk The whole time of Perimenopause I didn't use anything extra for help. I had terrible hot flashes but since true menopause I have been fine. Although I do have dryness issues.
Cameron Peek I have bioidentical hormone pellet implants for many years. I go 4 times per year. I took a break for ... Read more
Cameron Peek I have bioidentical hormone pellet implants for many years. I go 4 times per year. I took a break for my surgery but just got a new implant at 11 weeks post surgery.
I wanted to share, not to work from the pr perspective, but because I feel the need is so great, especially in the heart population...I have recently completed ...Read more
I wanted to share, not to work from the pr perspective, but because I feel the need is so great, especially in the heart population...I have recently completed schooling towards integrative health coaching. I finished and am certified by Duke Integrative Medicine. I was a former counselor and have taught yoga for 15 years, and combined with my own health concerns, has led me to be forever grateful for this next step. Drs have such limited time with patients and a health coach is able to take physicians’ recommendations and work with others to help them through their health concerns. I am working privately now virtually or by telephone, under my own business of Red Thread Health LLC. My passion is heart health and awareness, and gracious knows I get it. If I can ever be of help for you and your friends and loved ones, please reach out. I am also in the process of running a virtual health coaching group for those with heart disease. Being part of this community has been a driving force in my own healing from surgery. I would be honored to help you with yours.
www.redthreadhealth.com
Shannon Gray Thank you! At 46, I finally feel like I know what I want to do... helping others through their own he ... Read more
Shannon Gray Thank you! At 46, I finally feel like I know what I want to do... helping others through their own health concerns.
Rita Savelis How wonderful Sharon! Would have loved to have had you as a coach. What a wonderful choice of a caree ... Read more
Rita Savelis How wonderful Sharon! Would have loved to have had you as a coach. What a wonderful choice of a career path. How gratifying to help others and provide what is missing in the health field.
So happy for you. xox
Shannon Gray Oh Rita! Hearing from you always puts a smile on my face. Thank you for your words of support. Always ... Read more
Shannon Gray Oh Rita! Hearing from you always puts a smile on my face. Thank you for your words of support. Always sending my best!
I have a question regarding sickness and proper care... so strep throat is already running rampant at my girls’ school. If they do contract strep, and since ...Read more
I have a question regarding sickness and proper care... so strep throat is already running rampant at my girls’ school. If they do contract strep, and since I’m the main care giver, I’m not sure if there are steps to protect myself. Do I go ahead and get an antibiotic prescribed for myself? Thank you!
Marie Myers Preemptive antibiotics are not recommended. Good hand washing combined with not touching your eyes or ... Read more
Marie Myers Preemptive antibiotics are not recommended. Good hand washing combined with not touching your eyes or nose are your best defense, along with healthy diet, exercise, and sleep . All these combine to keep your immune system running at it’s best. Wishing you all the best in avoiding the “bugs”....
Brent Moore Shannon, I am glad you posted this. I was having some questions/concerns about the same thing after h ... Read more
Brent Moore Shannon, I am glad you posted this. I was having some questions/concerns about the same thing after hearing the news about strep as well. Good question. I know I am fighting what feels like allergy related stuff right now myself and trying to figure out the best way to attack that . Thanks, and hope you are well.
Shannon Gray Thank you Marie. I know I can’t live in a bubble, but with two children, it’s like living in a ce ... Read more
Shannon Gray Thank you Marie. I know I can’t live in a bubble, but with two children, it’s like living in a cesspool of germs.
Brent... this is the hard part. Always being aware and worrying about this. Gracious, it’s exhausting!
Seeing how allergy season is upon us, does anyone recommend allergy medicine that won’t interfere with heart rythem/blood pressure? Thank you!
Barbara Wood I use a neti pot...not the best, but I'm so afraid of afib - my first experience with it was thought ... Read more
Barbara Wood I use a neti pot...not the best, but I'm so afraid of afib - my first experience with it was thought to have been caused by sudafed!
Shannon Gray Yes... I have one, but end up using more of a saline rinse. It can be uneasy trying to figure out wha ... Read more
Shannon Gray Yes... I have one, but end up using more of a saline rinse. It can be uneasy trying to figure out what is safe or not. Thanks for sharing!
Catie B Shannon, I'm so sorry you're suffering! I'm dealing with "something" affecting nose/throat the last 8 ... Read more
Catie B Shannon, I'm so sorry you're suffering! I'm dealing with "something" affecting nose/throat the last 8 mos. and saw ENT yesterday. Trying 2X daily sinus rinse bottle and hoping to avoid sprays. Hope you can find something gentle that helps you!
Shannon Gray Thank you, Catie! It’s been a hard allergy season. Hope you’re finding some relief, too.
Susan Lynn I take the Rx equivalent of Claritan. I was not prescribed the one with decongestant because it can ... Read more
Susan Lynn I take the Rx equivalent of Claritan. I was not prescribed the one with decongestant because it can raise blood pressure. A chat with your pharmacist could be helpful. Good luck !
Catie B Thank you, Shannon. The ENT recommended using Flonase--I don't know whether that could help any of yo ... Read more
Catie B Thank you, Shannon. The ENT recommended using Flonase--I don't know whether that could help any of your symptoms. I can't take it because of osteoporosis, but when I looked it up, I didn't see cardiac side effects. Could check with pharmacist....
mara katz Hi Shannon on a different note wondering if once you healed from the pericarditis hopefully that was ... Read more
mara katz Hi Shannon on a different note wondering if once you healed from the pericarditis hopefully that was it and there wasn’t a recurrence.
https://consultqd.clevelandclinic.org/valve-surgery-for-asymptomatic-aortic-regurgitation-its-time-to-update-guidelines/?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+04-02-19&utm_content=story3+cta&mkt_tok=eyJpIjoiTW1GbE16Z3dNREl3T0RNeCIsInQiOiJNdnVZN2lmd3FcL1hWeVprQmNVM3BmR1pHVkxaTzBITjhqQ0pOOHhjbmlPbXYrWllWR1p5ZkpEZldjK0gzMnczamo1Z3RPcHRHaDRVdVhNWDI5YXk2QXpGRFwvOXN3TU1CbHMyOXpiaFhXOGp5b1V2aXlNblJpRmR6MXlCZ0xiU1FQIn0%3D ...Read more
Pathophysiologic understanding and deep experience with BAV are invaluable
LINDA ROBERTS Thanks for sharing this article. I recently had my yearly check-up at Cleveland Clinic and my aorta ... Read more
LINDA ROBERTS Thanks for sharing this article. I recently had my yearly check-up at Cleveland Clinic and my aorta valve is doing fine but I have a 4.5 mid-ascending aneurysm. Apparently at time of surgery it was 4.4 and I am 5'2" weighing 124 lbs. Surgery was Aug. 17th. By reading this article, I was trying to grab some insight why the aneurysm was not dealt with at that time.
Mike Ridenour Dr Svennson was my surgeon as well. The first surgeon I spoke with mentioned I may need a root becaus ... Read more
Mike Ridenour Dr Svennson was my surgeon as well. The first surgeon I spoke with mentioned I may need a root because of the aorta aneurysm, it seems like I was told mine could be "tailored" because the size was under a particular threshold and in addition, I ended up having 5 bypass's which I am trying to remember someone told me the bypasses do best on native tissue (or something like that). It may have been Dr Svennson that told me that.
Time feels as if it stays on fast forward. So much so, I was unable to writ anything on my 3 year anniversary of my aortic graft/bicuspid aortic valve repair ...Read more
Time feels as if it stays on fast forward. So much so, I was unable to writ anything on my 3 year anniversary of my aortic graft/bicuspid aortic valve repair on Feb. 22nd. I still get a good giggle in seeing how this day was deemed National Valve Disease Awareness Day, I believe on my one year anniversary. I still read this space every morning and check in on how everyone is faring. This is such a special, caring, and supportive space, and I feel so thankful for each of you and your stories. We're truly all in this together.
What is life like three years out? Still up and down days, but I believe that has more to do with the emotional toll my experience brought about. I've had to grieve the life I had before surgery and continue to give myself grace with this new one. I am more aware, knowledgeable, and patient than I ever was before. That also comes with a price...my struggle continues to be the anxiety and worry of my continual "what if's?" I still experience breathing issues...like I can't get a full breath, which perpetuates the anxiety. At my annual check in at The CC, my cardiologist offered that my lungs probably took such a beating from surgery, combined with possible asthma, leading to these issues. I meditate, exc. comfortably, and notice it all goes away at night when things are calm and quiet. If I could only control that monkey mind the other hours of the day. Although professionally I was a school counselor, my love for the theatre and performing runs deep. I recently auditioned for Mama Mia at our community theatre...no, sadly I did not receive a part, but the autions were tough and certainly put my abilities to the test. I danced like I haven't for years, belted out my audition songs, and became quite the animated performer during the auditions. I kept watch over my fitbit watch looking at my heart rate...y'all, it scared me, but it also built a level of trust I had lost over my body. Sometimes I feel as if those type of experiences are exactly what I need, although it puts the fear of God in me.
As always, sending out my support to all just beginning this journey. I am so thankful for each of you!
LINDA ROBERTS Thanks for sharing how you have been doing. I am now 6 months after surgery and have not had a post ... Read more
LINDA ROBERTS Thanks for sharing how you have been doing. I am now 6 months after surgery and have not had a post echo yet for my local cardiologist in Florida has not felt like it is necessary yet. I am thinking of returning to the Cleveland Clinic for a 1 year follow up after surgery. How far from the Cleveland Clinic are you? Glad to hear you had fun trying out for Mama Mia and good for you pursuing one of your dreams.
Shannon Gray Hi! I am in North Carolina, so it’s about an 8/9 hour drive. I wish you well as you continue your r ... Read more
Shannon Gray Hi! I am in North Carolina, so it’s about an 8/9 hour drive. I wish you well as you continue your recovery.
Rita Savelis Hi Shannon. I love the sentence about (re)building a level of trust in your body that you had lost. Y ... Read more
Rita Savelis Hi Shannon. I love the sentence about (re)building a level of trust in your body that you had lost. YES! I hear you. Happy 3 years. And keep dancing and singing! (And posting.) xox
I have a question for those of you blood thinners. My dad, who has a pacemaker and is in Coumadin, is need of two procedures within a month of each other. He ...Read more
I have a question for those of you blood thinners. My dad, who has a pacemaker and is in Coumadin, is need of two procedures within a month of each other. He is supposed to go off Coumadin for both. He is worried about going off blood thinner so close to each other and the possibility of stroke. His cardiologist nurse suggested taking a baby aspirin on the days he’s off, but he’s worried nonetheless. What has been anyone’s experience with this? Thank you!
Marie Myers Have they mentioned Lovenox bridging? Many times in surgery, the patient is transitioned to Lovenox f ... Read more
Marie Myers Have they mentioned Lovenox bridging? Many times in surgery, the patient is transitioned to Lovenox for a couple days, then returned to Coumadin.
Shannon Gray No, they only mentioned perhaps baby aspirin. What is lovenox? Thank you, Marie. Hes wanting to put o ... Read more
Shannon Gray No, they only mentioned perhaps baby aspirin. What is lovenox? Thank you, Marie. Hes wanting to put off one of the procedures ( one is a colonoscopy and the other eye lid surgery), which I’m hoping there is an alternative way to go about this.
Tom Bartolomei I’m scheduled for a non-urgent colonoscopy in February. Have a St. Jude Regent mechanical valve an ... Read more
Tom Bartolomei I’m scheduled for a non-urgent colonoscopy in February. Have a St. Jude Regent mechanical valve and surgery was 11/15/18. Lovenox was suggested as a bridge. It’s a blood thinner and I’ve used it before for a totally different reason. The catch on lovenox is that its an injection but it can be self administered and is usually done in the abdomen. Not that big of a deal and no pain but a bit of proper mindset needed to self administer is all.
Shannon Gray Thank you! I will pass this information onto him. Anyone else who has been through similar experience ... Read more
Shannon Gray Thank you! I will pass this information onto him. Anyone else who has been through similar experiences, I would love to hear from you.
https://consultqd.clevelandclinic.org/how-durable-are-bioprosthetic-surgical-aortic-valves/?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+12-17-18&utm_content=story3+title&mkt_tok=eyJpIjoiTkRBeU5ERTFZVEZrTkROayIsInQiOiJwY3VNSmN3RlwvQlJNeVNFQ05TdXQ4OFNkcFh6OEphMnpwbDEzaEdYUEpqN3J2T3RNaXcwcTAxVll1c3RzcEFNbkNqWVkydFhUYlg0UjJXNXdCeGRFeFFcL1Y2USt1bEYyNEZ1NUoxdWQ4UWcrMHY0dndabVYwaEltWTJhemJRcFhyIn0%3D ...Read more
https://consultqd.clevelandclinic.org/how-durable-are-bioprosthetic-surgical-aortic-valves/?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+12-17-18&utm_content=story3+title&mkt_tok=eyJpIjoiTkRBeU5ERTFZVEZrTkROayIsInQiOiJwY3VNSmN3RlwvQlJNeVNFQ05TdXQ4OFNkcFh6OEphMnpwbDEzaEdYUEpqN3J2T3RNaXcwcTAxVll1c3RzcEFNbkNqWVkydFhUYlg0UjJXNXdCeGRFeFFcL1Y2USt1bEYyNEZ1NUoxdWQ4UWcrMHY0dndabVYwaEltWTJhemJRcFhyIn0%3D
Thought to share.
Review says there’s too much data variance to know
Rita Savelis Yeah, that article doesn't surprise me.
(Hope you're doing well Shannon. Happy holidays!)
Willie Radl So the whole article is basically saying it's inconclusive?
Shannon Gray Due to lack of research, sadly yes. Hopefully it’s a plug for more detailed studies.
Happy holidays ... Read more
Shannon Gray Due to lack of research, sadly yes. Hopefully it’s a plug for more detailed studies.
Happy holidays Rita! Sending my best!
LINDA ROBERTS Sadly it seems a lack of controlled detailed studies where definitive comparisons can be made between ... Read more
LINDA ROBERTS Sadly it seems a lack of controlled detailed studies where definitive comparisons can be made between one valve and another. The article hopefully will lead to changes in this area and lead to more concrete information.
Passing along a article explaining the differences in cardiac health, timing of surgery for aortic dilation differences, as well as other crucial elements effecting ...Read more
Passing along a article explaining the differences in cardiac health, timing of surgery for aortic dilation differences, as well as other crucial elements effecting the Turner Syndrome population. TS effects 1/200,000 female births, so it is very rare. However, not a lot of information has been formulated around this rare genetic disease. TS does not define me, but it is a part of me. In case there is some other woman facing this, this is an article for you. Blessings.
https://docs.wixstatic.com/ugd/8fb9de_260c58fcee844c77ba3d921b41ee99a6.pdf?fbclid=IwAR2A-gC5go7aItapWvCkSQquBd8Di9onR_HFjCs4-E06mn7Vbg2uT_sblKc
Thought I’d check... what’s the running rate for how many ct scans anyone has had done? Everyone is different and understand they can effect each of us ...Read more
Thought I’d check... what’s the running rate for how many ct scans anyone has had done? Everyone is different and understand they can effect each of us differently, but I am worried about the excessive amount of radiation after having 5 in less than a year. I am now needed to get another one and quite worried about it. It seems to me that Drs are now quick to request a ct scan just to protect themselves ( used as a road map before they even consult with a patient), however the well being of the patient is not considered. Would love to understand more about this.Thank you.
Marie Myers Good question. I asked my cardiologist the same question when I was getting my 3rd CT scan within a y ... Read more
Marie Myers Good question. I asked my cardiologist the same question when I was getting my 3rd CT scan within a year. He told me the radiation was minimal, and not to worry about it. But 5? I don't know. I would ask the radiologist at the diagnostic center to get his/her perspective.
Chris Purvis That’s a great question never thought about that when I get an x ray of any type. The little things ... Read more
Chris Purvis That’s a great question never thought about that when I get an x ray of any type. The little things we never think about could prove to me very imprtant. If you find out Shannon please let us know.
Barbara Wood CT scans are very high in radiation - could an MRI be used instead? I had just 1 done for my pre-op.
Rita Savelis Diagnostic radiation is light compared to treament radiation, but I hear you, who wants any of it?
I ... Read more
Rita Savelis Diagnostic radiation is light compared to treament radiation, but I hear you, who wants any of it?
It's all such a pain.
We've had too many procedures.
You still may have to breathe deeply and be CT'd again unless you've got a former CT to show the new doctor...?
Anna Jones I haven't had any in the last year. I had 2 chest x-rays so far and that concerns me too. My surgeo ... Read more
Anna Jones I haven't had any in the last year. I had 2 chest x-rays so far and that concerns me too. My surgeon said he will be doing a TEE as part of my surgery, but I don't know if I will have a CT scan at the hospital at some point. It's been very much a show up and submit type of thing and that makes me uncomfortable.
Rose Madura I can't remember how many CT scans I had! I think at least 4 and maybe even 5. It seemed like they ... Read more
Rose Madura I can't remember how many CT scans I had! I think at least 4 and maybe even 5. It seemed like they did a new one with each readmission. I Googled it and found a study that said...
"We found that while most patients accrue small cumulative cancer risks, 7% of the patients in our study had enough recurrent CT imaging to raise their estimated cancer risk by 1% or more above baseline levels,” says lead researcher Aaron Sodickson, MD, PhD...
I felt like I didn't have a choice because they had to see what was going on.... hmmm....so I guess that now I have no choice but to wait and see.
Lise Bowles Shannon, I’ve always been told my the docs, radiologists etc, don’t worry about it, it’s almost ... Read more
Lise Bowles Shannon, I’ve always been told my the docs, radiologists etc, don’t worry about it, it’s almost like just being in the sun for a day.....well who Knows what to believe, It’s cumulative and that’s a fact. I glow in the dark I’m sure. I was in a car accident in 1980 with a head injury. I had numerous brain scans, etc. FF to 14 years ago and I had breast cancer over my left breast and had radiation treatment as a cure. Then this last year I have had robably 5 CT’s in total. Ugh! I’m with you as far as being concerned, but I’m not sure there is any alternative, they do have to see what they are doing. Ugh
And the good news is, we are still here.....❤️
Shannon Gray Thank you all for sharing. I feel pretty helpless when there’s nothing left to be able to do.
LINDA ROBERTS Sorry to hear you have to get another scan. Is this related to your heart or another issue?
Life has been really hard lately... My mom passed away suddenly on April 18th. I still find I’m in shock and disbelief. She was my best friend, my anchor, ...Read more
Life has been really hard lately... My mom passed away suddenly on April 18th. I still find I’m in shock and disbelief. She was my best friend, my anchor, my greatest cheerleader. My sweet Dad is just so
Lost without her. Just two years ago she was helping me through my recovery, my guardian, and the greatest help with my two girls. A world without her has been so very hard.
In the midst of this, I had been trying to see plastic surgeons regarding my atrophic scar from my pericardial window. The steroid injection created an indention and thinned the tissue away so much I can see through the thin layer of skin remaining and see what it believes to be staples or stitches... I’m not sure which. Plastic surgeons have given various scenarios... all involving surgery to redo the scar. I was sent to a thoracic surgeon locally, but I became uncomfortable since he didn’t seem familiar with my whole case issues (Turner Syndrome, connective tissue disorder) I’ve been in contact with cleveland Clinic ( where I had my surgeries) and they recc. I see a thoracic surgeon there... but it would be a two trip process... so much to face while raising two girls. They also want me to get a ct scan before the consult... I had 5 ct scans within 6 months time frame... I just don’t want to have anymore done due the effects of radiation. They are saying it’s a must, but I truly don’t want to go through another. I don’t know what other options are left. I’m feeling quite lost and discouraged. All because of steroid injections on my scar. Not exactly the most positive update, I do apologize, but I haven’t had a lot of light shining my way.
Judy Shaw Awe bless your heart Shannon. I'm so sorry you are going through this and my deepest sympathy of the ... Read more
Judy Shaw Awe bless your heart Shannon. I'm so sorry you are going through this and my deepest sympathy of the recent loss of your mom. I lost mine in 2009 and have been lost without her ever since. Sometimes our light dims but never goes out. God will get you through this and let your light shine once again. Your daughters are your beacon.
Susan Killian So sorry for your loss. Hope you get answers.
Anna Jones Hi Shannon, please accept my sympathy on the loss of your mom. Just to let you know, your dad is go ... Read more
Anna Jones Hi Shannon, please accept my sympathy on the loss of your mom. Just to let you know, your dad is going to be in shock -- which is the mind's way of protecting itself from the intensity of grief -- for about 4 months. After 4 months, the shock will wear off and he will feel the full effects of his grief. Meanwhile, he is very vulnerable... you both are, so please be careful about any decisions you both make. Hospice usually has grief therapy groups for spouses... even if your mom did not use Hospice. You might want to keep that in mind for him if he might want to take advantage of it. Also, churches usually have grief groups for both spouses and family members. So, if you are having a difficult time, you might want to look into that too. Also there are grief therapists who specialize in helping family members to work through their grief. You can find them through Google. Finally, there is this website: http://www.city-data.com/forum/grief-mourning/ where you or your dad can post anonymously and for your dad there is a private Facebook group that he would have to ask to join: https://www.facebook.com/groups/44462297979/?ref=bookmarks (I hope this link works).
Bonnie Stone-Hope Sad to hear this news.
So sorry about your Mother's passing.
Thinking of you at this time.
Susan Lynn So sorry for the loss of your mother. You're going through so much right now. I'll keep you in my p ... Read more
Susan Lynn So sorry for the loss of your mother. You're going through so much right now. I'll keep you in my prayers.
Just a thought on your scar treatment, you may to try NYC or southern California plastic surgeons. They tend to be very progressive and may have more options. Best of luck to you.
Rita Savelis Oh, Shannon, so sorry for your loss.
Thinking of you as you go through this difficult time.
Peggy Whitecotton So sorry to hear of the loss of your mother. I know its hard. I lost my mom 17 years ago and still mi ... Read more
Peggy Whitecotton So sorry to hear of the loss of your mother. I know its hard. I lost my mom 17 years ago and still miss her terribly she was my best friend...
Marie Myers Wishing you comfort at this time. So sorry for the loss of your mother.
Shannon Gray Many, many thanks for the comforting words and prayers. They are truly appreciated.
Rose Madura I'm so sorry for the loss of your mother. I'm sure last WEEKEND was extra hard on you. Four years a ... Read more
Rose Madura I'm so sorry for the loss of your mother. I'm sure last WEEKEND was extra hard on you. Four years ago my husband and I both lost our mothers exactly four weeks apart. Stay strong.
Lise Bowles Omgoodness, Shannon, I am so sorry. Losing our Mother is a terrible thing to go through, no matter wh ... Read more
Lise Bowles Omgoodness, Shannon, I am so sorry. Losing our Mother is a terrible thing to go through, no matter what age. My mother passed 3 weeks after my first and only child was born and I just struggled tremendously with the grief and underlying fear of something happening to my son. That was 28 years ago. It was just awful. If you ever want to talk let me know and I will happily get in touch.
Regarding your scar, is there anything risky about the skin being thin or is it cosmetic? If it’s cosmetic you can deal with it in the future, and in the meantime be good to yourself and take care of you. Bubble baths, a massage, cry, go to a funny movie, binge watch Netflix, eat cake, get a pedicure, be kind to Shannon. You have been through a lot.
I am thinking of you, my pericarditis sister!
Lise Bowles❤️
Catie B Shannon, I'm so sorry about your loss and what an awful shock it has been. My heart goes out to you v ... Read more
Catie B Shannon, I'm so sorry about your loss and what an awful shock it has been. My heart goes out to you very much! I also hate what you're going through with the scar needing surgery. I hope you will be able to receive the very best and most effective treatment to take care of that. Take gentle care of you while your grief is so raw.
Shannon Gray Such kind and comfrting words... thank you! I am truly grateful for this wonderful group. Many, many ... Read more
Shannon Gray Such kind and comfrting words... thank you! I am truly grateful for this wonderful group. Many, many thanks.
One week after my aortic graft/valve repair, I went downhill fast due to a pericardial effusion. They ended up doing a pericardial window ( straight line cut ...Read more
One week after my aortic graft/valve repair, I went downhill fast due to a pericardial effusion. They ended up doing a pericardial window ( straight line cut at bottom of sternum) to drain the fluid. The scar healed hypertrophic... raised and very uncomfortable. One year after my surgery, I decided to go through with steroid injections to help flatten the scar. I entrusted my dermatologist pa. She ended convincing me three rounds of the injections would be needed. By last summer, the tissue started diminishing and an indention of at least 1.5 cm width was created... and by winter I could see through the thin layer of skin and my staples on my ribs are visible and can be touched. The skin is tight/pressed up against the staples. I am beside myself... my pcp and a kind laser dermatologist both suggested plastic surgery. I honestly don’t know where to begin... I don’t have a lot of faith left after going through those injections. Has this ever happened to anyone? What did you do and how did you get through this? I’m paranoid of an infection or other issues that may come. Looking for guidance as I feel pretty defeated. Thank you!
Catie B Oh no! That sounds like a nightmare, Shannon. I'm so sorry you've been through all of this. I don't h ... Read more
Catie B Oh no! That sounds like a nightmare, Shannon. I'm so sorry you've been through all of this. I don't have any experience, but I hope you can find the most experienced professional possible to help you with the new issues.
Shannon Gray Thank you Catie! I always felt strongly with my Drs for my heart... but this... I don’t even know w ... Read more
Shannon Gray Thank you Catie! I always felt strongly with my Drs for my heart... but this... I don’t even know where to begin. Most plastic surgeons are the “make you pretty” type... and I don’t know how to find one more aware of my situations and medically based. I wholeheartedly trusted my dermatologist pa... and now I could kick myself to going along with what she believed.
Meredith Bray You need a Fairy Godmother! How about asking your surgeon or cardiologist if they can recommend someo ... Read more
Meredith Bray You need a Fairy Godmother! How about asking your surgeon or cardiologist if they can recommend someone? When I was in desperate need of a new specialist, I found the best advice came from the front office staff at my surgeon's office. Perhaps they can point you in the right direction.
Civita Fahey I'm so sorry to hear this Catie.. I also had a hypertrophic scar and have had 2 sets of injections. t ... Read more
Civita Fahey I'm so sorry to hear this Catie.. I also had a hypertrophic scar and have had 2 sets of injections. they seemed to have worked pretty well, but my dermatologist was very apprehensive of too many.. I hope you can find someone who can repair that.. I know they are out there.. wishing you the best.
Shannon Gray Thank you Meredith and Civita! Meredith... I believe my fairy godmother took a vacation after my surg ... Read more
Shannon Gray Thank you Meredith and Civita! Meredith... I believe my fairy godmother took a vacation after my surgeries, and she hasn’t returned! 😂. Good starting points... I’m making my list and will start Monday. Thank you!
Lise Bowles Shannon, I have no experience with this, but I have empathy for what you are going through! Just what ... Read more
Lise Bowles Shannon, I have no experience with this, but I have empathy for what you are going through! Just what you need, shoot! You know I would think that you cannot be the first that has experienced this, I would also vote to go back to the surgeons office and get their recommendation! Were you able to find anything online regarding this problem? Maybe a skin graft to add tissue to the area? What does your derm say about this?
I live in an area where there are a lot of elderly folks and I know the plastic surgeons in this area are very busy doing all sorts of things that have nothing to do with beauty. As a matter of fact I’ve had a number of times I’ve had to go to a plastic surgeon from my dermatologist because of skin cancers. An example is I had a small squamous cell cancer on the top of my left ear . I didn’t want my ear to look like it had been chewed on by a dog and I was really concerned because he had to remove the entire bent over flappy thing (new medical term) and he removed it and took some skin from behind my ear in my hairline and completely rebuilt the bent over flap! You cannot even tell it’s been done unless maybe you used a magnifying glass! It is amazing what they can do and I understand your concern about infection etc. because of the horror of pericarditis, yet I bet if you talk to a really good plastic surgeon they can set your mind at ease, or at least help to make you feel less afraid. I do have to tell you I would be really pissed at the PA! Ugh! I am so sorry, keep us posted please. XO Lise
Catie B Shannon, Lise is right. There are definitely plastic surgeons who do more medically necessary proced ... Read more
Catie B Shannon, Lise is right. There are definitely plastic surgeons who do more medically necessary procedures and do them with excellence. I hope just the right one will be available to take care of you.
This was more of a massive thing and I'm not trying to segue into something scary. But a few years ago, in order for them to get clean margins during a cancer surgery, my dad had to have one of his eyes removed. A phenomenal plastic surgery took muscle and skin from his thigh and filled the entire area in.
Shannon Gray Wow! Thank you both! I’m going to start with my pcp here at home. My surgeon was Dr. Svennson at Cl ... Read more
Shannon Gray Wow! Thank you both! I’m going to start with my pcp here at home. My surgeon was Dr. Svennson at Cleveland Clinic, so I’m not sure how reachable he is in this situation. I did put in a call to my cardiologist at CC to get an opinion. The search begins!
And yes... I’m very upset with the dermatologist pa. She even lives in my neighborhood, which makes it even more uncomfortable;)
Rita Savelis Oh, Sharon, my heart goes out to you. You did not deserve this... I so hope that you get a good recom ... Read more
Rita Savelis Oh, Sharon, my heart goes out to you. You did not deserve this... I so hope that you get a good recommendation.... Geez.... Thinking of you with love.
Shannon Gray Thank you, Rita! It's always something, isn't it? I hope to hear if this happened to anyone else...I ... Read more
Shannon Gray Thank you, Rita! It's always something, isn't it? I hope to hear if this happened to anyone else...I don't know the things to ask or what to proactive about when it comes to this.
Bonnie Stone-Hope So sorry to hear this news. Thinking of you and prayers coming your way.
Catie B Just a thought, Shannon. At CC, my best and most accessible resource was always the nurse practice ma ... Read more
Catie B Just a thought, Shannon. At CC, my best and most accessible resource was always the nurse practice manager in my surgeon's office. Do you have any local doctor you could trust (GP or otherwise) who might be able to recommend a stellar plastic surgeon nearby? Toss out anything unhelpful from me.... My heart sure goes out to you, Shannon. I hope someone will be available and truly stand out that you'll be able to trust and go forward with.
Lise Bowles Shannon, I am not up to date on your condition, please fill me in, I am hoping and praying you are do ... Read more
Lise Bowles Shannon, I am not up to date on your condition, please fill me in, I am hoping and praying you are doing well!
Yesterday, also National Heart Valve Disease Awarness Day, was two years since my aortic graft and aortic valve repair. Two years... there are moments when ...Read more
Yesterday, also National Heart Valve Disease Awarness Day, was two years since my aortic graft and aortic valve repair. Two years... there are moments when I forget the experiences, but there are still more moments when it feels fresh, tender, and sore . I had a difficult recovery... a month in the hospital. I had just been discharged from the hospital, staying in a hotel nearby the hospital, and awaiting clearance appointment to go home. Within 48 hours I had a severe pericardial effusion and taken back to the hospital. The fluid built up around my heart so fast and furious, almost as if my heart was drowning. I don’t recall that first week back in the hospital. I didn’t even know I’d had a second surgery. I do know I was truly “delirious” and gave the head ICU nurse heck, according to my husband. I’m sure they have my picture behind their desk under” Most Wanted” patients. When I finally came to, it was just a couple of days away from my oldest daughter’s birthday. I could see in my husband’s eyes I wasn’t going anywhere for a long time, but it crushed me knowing we wouldn’t be there for my beautiful daughter. She was only turning 9 at the time. We had promised her we’d be back home in plenty of time to celebrate,
So here I am, 2 years out. What is life like? My breathing continues to be a mystery, but is especially troublesome in the hot humid summers of the south. Nothing can be found as to why, but I just can’t seem to take a full breath... almost as if it caps off at a certain point. I am in constant motion with my two girls,4 and almost 11. I see my time with them completely differently and don’t take one second for granted. My depression and anxiety ebbs and flows, but it feels like a prison sentence when it hits. Trapped, fearful, hopeless. Sometimes what I went through is all I want to talk about, other times I want to box it up and forget about it.
I have also found ways to share and talk with other woman with Turner Syndrome and become more active in the National Turner Syndrome Society. You see, my Turner Syndrome is the cause of my congenitalheart issues ( bicuspid and enlarged aorta) Infertility, early menopause, short stature, thyroid issues, kidney issues, the list is long. It wasn’t until 2007 when it was realized women with TS were dying of aortic disssections because the aorta ruptured at a very early size. I can’t tell you how many heartbreaking stories of these women who were treated by cardiologist who were unaware of the great risk these women were running with an enlarged aorta at only 3.9 or a 4.0.
I have also learned to laugh with my husband about this whole experience. Like the story of my surgeon, Dr.Svennson, who checked on me every morning for a month total, but it wasn’t until the the end of “Hotel Cleveland Clinic” that he pulled a nurse aside after his early morning visit with me and asked about the ocean sounds playing in room ( they were sleep sounds from my phone my husband played in the room every night)... he was curious as to if all patients had that playing into their rooms... it must’ve really been something he liked, because the nurse came laughing back into my room sharing it wouldn’t surprise her if Dr.Svennson found a way to get spa sounds playing in all the rooms at night. The other was of a very happy, outgoing, very enthusiastic nurses assistant who would repeatedly say “There’s ice cream and icees in the fridge!!! Mmmm-mmmm!” EVERY TIME we saw him when I walked the halls. I was in a pitiful shape and not enthusiastic about anything at that point, but that nurse assistant would crack me up every day. Whenever my husband or I are in a glum mood, the other will repeat the phrase with wide smiles and arms and hands waving about! It still works to lighten us up!
So for all of you about to begin this journey, expect the unexpected, find humor whenever you can, and be gentle and kind to yourself. Know that I hold each of you in my prayers. Many blessings!
Barbara Wood Happy Anniversary Shannon! What a wonderful post....one thing I've learned from hanging around this f ... Read more
Barbara Wood Happy Anniversary Shannon! What a wonderful post....one thing I've learned from hanging around this forum is that we all have different surgery & recovery experiences- there is no one size fits all! Best wishes for many more to come!
Alina FH Many blessings back to you, dear friend! You know I can relate to the weird breathing. Same for me: ... Read more
Alina FH Many blessings back to you, dear friend! You know I can relate to the weird breathing. Same for me: I want more air and something seems to stop me when my lungs are not full yet. Be well and I wish you many light and bright moments. And none of the dark ones! Hugs! Much health! 💕💜💕
Rita Savelis Thank you for this lovely honest post. I need these kinds of posts! I agree that one has to laugh whe ... Read more
Rita Savelis Thank you for this lovely honest post. I need these kinds of posts! I agree that one has to laugh whenever one can. That, or cry. Both. All the time. It's too intense, and you were there Shannon, and it stays, even 2 years later. I felt like you at 2 yrs but as I approach 3, it seems a bit farther away. It's a good feeling. (But still the breathlessness is there....)
Shannon Gray Thank you all! The support on this blog site has been a saving grace!
Phyllis Petersen It's good to hear you are doing well now, although you still have a breathing issue. I have asthma, s ... Read more
Phyllis Petersen It's good to hear you are doing well now, although you still have a breathing issue. I have asthma, so I know that feeling, but thankfully don't feel it all the time. It has to be really uncomfortable. Does it affect your energy levels, not being able to get a full breath in? I was at CC only for a short time, but the staff there were wonderful to me. All the best for continued improvement.
Pray that good health and happiness are in your future.
Lise Bowles Shannon, how difficult it’s been for you, I am so sorry!
I try my best to remain positive but somet ... Read more
Lise Bowles Shannon, how difficult it’s been for you, I am so sorry!
I try my best to remain positive but sometimes it’s just discouraging isn’t it? You have two special little people to cherish and so I am sure that helps! I understand about the change in perspective of treasuring each moment with those we love, XO Lise
It's been a while since I've last posted, and this is more or less a question when it comes to getting sick. I am paranoid of getting sick/ some type of infection ...Read more
It's been a while since I've last posted, and this is more or less a question when it comes to getting sick. I am paranoid of getting sick/ some type of infection ( upper respiratory, strep), but I have an almost 4 year ago old, who like most children catch anything and everything. Anyone with young children, how do you handle this? I literally make myself crazy when she comes down with any creepy crud. I would love any insight as to how anyone else faces this. Much love!
Catie B Good to hear from you, Shannon! I don't have kids, but I've understood we don't have to worry about ... Read more
Catie B Good to hear from you, Shannon! I don't have kids, but I've understood we don't have to worry about every little cold that comes along, that a regular cold is not a concern. I got the sense that if I spike a fever and it seems like more than a virus that would run its course, to call my doctor. I would definitely go in, if I suspected strep.
Rita Savelis Hi Shannon, Nice to hear from you.
I'm sorry about your worries....
I hear you on being sensitive ab ... Read more
Rita Savelis Hi Shannon, Nice to hear from you.
I'm sorry about your worries....
I hear you on being sensitive about catching anything. It's hard. All I can say is, breathe.
Doctors will give you antibiotics, but it may be better to save those for the times when you get something infectious....and not just the basic viral cold....
Take care.
Craig Irving Hi Shannon. I wash my hands a lot more when out out in public, but I try not to over worry. we Reciev ... Read more
Craig Irving Hi Shannon. I wash my hands a lot more when out out in public, but I try not to over worry. we Recieved valve replacements to keep enjoying life, not to be afraid of it.
Civita Fahey I just got over a pretty bad cold.. it was fine.. I was nervous too but get your rest, vitamin C . do ... Read more
Civita Fahey I just got over a pretty bad cold.. it was fine.. I was nervous too but get your rest, vitamin C . doc said anything that lasts over a week to 10 days you should have checked out like Craig said we can live in fear.
Gerald Poulton You cant live in a bubble so just live well and enjoy life. Keep yourself healthy by eating well and ... Read more
Gerald Poulton You cant live in a bubble so just live well and enjoy life. Keep yourself healthy by eating well and getting sleep besides, being paranoid and nervous probably makes you more prone to getting sick 😀
Lilly Black Shannon, my husband and I need to be careful of germs as well. So here's what we do....when we come h ... Read more
Lilly Black Shannon, my husband and I need to be careful of germs as well. So here's what we do....when we come home from the grocery store, we wipe down all of our food with Clorox wipes and then store them in the fridge or pantry. We always carry a small spray bottle of alcohol to spray our hands when we touch a shopping cart, or whatever else. I keep a hand sanitizer solution in my car as well. There are all kinds of hand sanitizers out there! you can even teach your kids to be using them...without being OCD about it. I see too many children in public places and it is evident they are not taught about sneezing or coughing without covering their mouths etc. As far as I'm concerned, we do need to be cognizant about others so we "try" not to spread germs on each other. But I am also with Gerald....stay healthy, don't be paranoid and keep good habits. I hope this is helpful. Take care.
Shannon Gray Thank you all. It's just hard when it's your own little one that gets sick all the time. I take such ... Read more
Shannon Gray Thank you all. It's just hard when it's your own little one that gets sick all the time. I take such precautions when out and when coming home, but I'm left backed in a corner when it's my own daughter. Your support and words are so appreciated. Thank you!
Catie B Sorry it's so scary with your little one, Shannon and that she's frequently ill. That's hard when yo ... Read more
Catie B Sorry it's so scary with your little one, Shannon and that she's frequently ill. That's hard when you're trying really hard to be careful and take care of you. Hope it starts to lessen and that most of the bugs she picks up will be garden-variety colds.
I wanted to share an email I received from American Heart Association yesterday. It's quite lengthy. Many blessings!
Having trouble viewing this email? View ...Read more
I wanted to share an email I received from American Heart Association yesterday. It's quite lengthy. Many blessings!
Having trouble viewing this email? View it in your browser.
To ensure proper delivery of future American Heart Association emails, Add us to your safe senders list
lifeiswhyLOGO
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The American Heart Association and Edwards Lifesciences Foundation has embarked on a mission to elevate awareness and understanding of heart valve disease among all Americans.
Each year more than 5 million people are diagnosed with valvular heart disease and this number continues to grow as the population ages. Patients with severe untreated valve disease are at increased risk for developing heart failure, stroke and even death.
AHA is helping Edwards Lifesciences identify patients with Heart Valve Disease, who can serve as consultants on a research study. The purpose of the study is to learn more about Heart Valve Disease from the patient's perspective and experience. Edwards Lifesciences supports AHA's Heart Valve Education center and Heart Valve Ambassador program.
Evidera, a consulting research company working for Edwards Lifesciences, is developing this study to find out what is most important to patients suffering from Heart Valve Disease (HVD). They need to talk to patients with the disease to help better design the study. If you have Heart Valve Disease and meet other criteria, you may be eligible to become a paid consultant to Evidera in exchange for your spending approximately 1.5 hours in a phone interview.
STUDY OVERVIEW
The purpose of the patient-centered pilot study is to better understand how features and outcomes of heart valve treatments are valued by patients with valvular heart conditions. Two to three patients will be asked to serve as patient consultants to the study. They could use your help, if you have been diagnosed or treated for heart valve disease.
YOUR ROLE AS A PATIENT CONSULTANT
The purpose of the patient consultant interviews will be to draw on your experiences to identify positive and negative features of treatment. You will be asked to provide the aspects of treatment that are important to you and will be presented with a variety of treatment attributes for discussion. You will also be expected to add further insight around suitable attributes. Evidera anticipates that your involvement will include participating in a 60-90 minute telephone interview.
Please note that all interviews will be audio recorded, with your consent. Evidera will provide you with a short summary of the results at the end of the study, should you wish.
If you are interested in participating, please contact the Evidera study team directly at tricuspid@evidera.com with your name, email address, and contact number.
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Lilly Black Thank you Sharon. Planning on it yourself? Interesting. I may look into it!
Shannon Gray I'm thinking about it... it sounds really interesting. Anything to get the word out there for others. ... Read more
Shannon Gray I'm thinking about it... it sounds really interesting. Anything to get the word out there for others.
Jennifer McInerney I thought it sounded really interesting. Definitely helping others facing this issue would be worthwh ... Read more
Jennifer McInerney I thought it sounded really interesting. Definitely helping others facing this issue would be worthwhile.
Lilly Black I agree. I will definitely look into it and hopefully can participate after my Nov 4th CEP test (cert ... Read more
Lilly Black I agree. I will definitely look into it and hopefully can participate after my Nov 4th CEP test (certification test). I'll keep you posted. Not sure if this will be available then. But I am very interested..... paying it forward!
Lisa Courkamp Thank you, for the information Shannon! Wow, you are a tiny little thing! I hope you're doing great ... Read more
Lisa Courkamp Thank you, for the information Shannon! Wow, you are a tiny little thing! I hope you're doing great since surgery. =)
Here are a few web chats from Cleveland Clinic...two which look interesting. I've enjoyed reading over the questions sent in from previous sessions. ...Read more
Here are a few web chats from Cleveland Clinic...two which look interesting. I've enjoyed reading over the questions sent in from previous sessions.
We have many exciting live online web chats scheduled for August. Take advantage of this rare opportunity to chat live with Cleveland Clinic physicians in a secure online setting.
View All Chats
August Online Health Chats (arranged by date):
Non-Surgical Treatment of Heart Valve Disease
Cleveland Clinic's Miller Family Heart & Vascular Institute is one of the largest centers in the country for the diagnosis and treatment of heart valve disease. Cardiovascular imaging specialists use state-of-the-art procedures to determine the type and severity of heart valve disease and plan treatment. The decision to prescribe medical treatment or proceed with surgical repair or replacement is based on the type of heart valve disease you have, the severity of damage, your age and your medical history. In this health chat, Drs. Jaber and White will discuss non-surgical treatments for heart valve disease.
Date: Thursday, August 10, 2017
Time: 12:00 PM (EST)
Asthma: What You Need to Know
At Cleveland Clinic Asthma Center, we offer the most advanced diagnostic testing and innovative treatments for adults and children with asthma. Within Cleveland Clinic Respiratory Institute, the Asthma Center brings together physicians from allergy and immunology, pulmonary and critical care, and sports medicine (for asthma in elite athletes). For those with asthma and co-existing conditions, such as sinusitis, gastroesophageal reflux, vocal cord dysfunction, cataracts, glaucoma or osteoporosis, we also coordinate your care with specialists in gastroenterology, ophthalmology, otolaryngology, osteoporosis and metabolic bone disease, and speech therapy. Please join us to have your questions on asthma answered by Lamia Ibrahim, MD, and Rachel Taliercio, DO.
Date: Wednesday, August 16, 2017
Time: 12:00 PM (EST)
Aorta Disease and Marfan Syndrome
At Cleveland Clinic's Aorta Center, our mission is to bring together a knowledgeable and experienced multidisciplinary team of cardiology and vascular doctors and surgeons and other experts to provide a thorough evaluation of patients using state-of-the art diagnostic testing, ongoing comprehensive care of patients with disease of the aorta, connective tissue disorder and Marfan Syndrome, genetic screening for families of patients with genetic disorders, and ongoing research and education to provide patients with high quality and innovative therapies. Please join us to have your questions on Aorta Disease and Marfan Syndrome answered by Director of Cleveland Clinic's Marfan Syndrome & Connective Tissue Disorder Clinic, Vidyasagar Kalahasti, MD, and Director of Cleveland Clinic's Aorta Center, Eric Roselli, MD.
Date: Monday, August 21, 2017
Time: 12:00 PM (EST)
What have ya'll done? I'm beside myself with things going on...today I went to a new dentist to get a periodontal exam. Really
Iiked the new dentist and I ...Read more
What have ya'll done? I'm beside myself with things going on...today I went to a new dentist to get a periodontal exam. Really
Iiked the new dentist and I checked out fine with the exam, except it was found to have a tooth infection where I'd had a root canal 13 years ago. I will be going to an endodontist next week to have a redo root canal, and I'm beside myself with worry. Paranoid of endocarditis. I was told to use the 4 capsule of antibiotics before the appt next week and all should be fine. What regime has anyone else taken? Longer days of antibiotics? I'm 15 months out from surgery for anuerysm and they repaired my bicuspid valve. Any words of experience are so appreciated. Thank you!
Catie B Shannon, I'm so sorry your tooth is infected. I don't have experience, but I hope you'll call your ca ... Read more
Catie B Shannon, I'm so sorry your tooth is infected. I don't have experience, but I hope you'll call your cardiologist to be sure of the right course of action.
Shannon Gray Thank you Catie! I did... Both my local and CC cardiologist. They conformed the same dosage as I ment ... Read more
Shannon Gray Thank you Catie! I did... Both my local and CC cardiologist. They conformed the same dosage as I mentioned above. I'm just so scared. I feel like the focus was all on my surgery 15 months ago, but no one shares with you the fear, questions, and constant concerns from the aftermath. I am paranoid of something happening. And of course since my bicuspid valve was semi repaired, there's the ongoing question of when will it need to be replaced? I'm just having a really tough time with how I'm left to pick up the pieces.
Phyllis Petersen Ouch! I need to get an implant where I previously had a root canal and cap. I'm counting on those ant ... Read more
Phyllis Petersen Ouch! I need to get an implant where I previously had a root canal and cap. I'm counting on those antibiotics too.
Barbara Wood I had a root canal about 6 months ago, before my valve was repaired & that's the regimen I followed. ... Read more
Barbara Wood I had a root canal about 6 months ago, before my valve was repaired & that's the regimen I followed. My cardiologist said I wouldn't need anything, my endodonist insisted I take the antibiotics- I was happy to take them, I'm with you on the endocarditis paranoia! Best wishes Shannon:)
Shannon Gray Thank you! I'ts just been constant issues lately....Im ready for that "hardly think about" phase to b ... Read more
Shannon Gray Thank you! I'ts just been constant issues lately....Im ready for that "hardly think about" phase to begin.
Henry Brouwer Hi Shannon, I have been taking antibiotics for years for dentist appt's before my AVR surgery and wil ... Read more
Henry Brouwer Hi Shannon, I have been taking antibiotics for years for dentist appt's before my AVR surgery and will continue to follow this process now that I have had AVR replacement with a tissue valve.
Catie B Shannon, I'm glad you were able to get confirmation on how much antibiotic to take. And I sure unders ... Read more
Catie B Shannon, I'm glad you were able to get confirmation on how much antibiotic to take. And I sure understand having to battle back various issues after surgery! I'm sorry you've had so many stresses. I hope your dental procedure goes well and that things calm down for you.
Rita Savelis Your dentist and doctor are most likely very used to this type of situation. Taking antibiotics befor ... Read more
Rita Savelis Your dentist and doctor are most likely very used to this type of situation. Taking antibiotics before is the standard procedure.
It is scary. Life is scary after OHS for so long. And then you calm down, and you accept. It will happen, Shannon. Take care.
Shannon Gray Thank you all! Your words are so helpful. I've been taking antibiotics before dental ttratments for y ... Read more
Shannon Gray Thank you all! Your words are so helpful. I've been taking antibiotics before dental ttratments for years....its just really making nervous now. Many thanks to all!
Meredith Bray I always take 2000mg amoxicillin before any dentist appointment, even cleanings. The only time I didn ... Read more
Meredith Bray I always take 2000mg amoxicillin before any dentist appointment, even cleanings. The only time I didn't was when I had an extraction. DDS put me on amox for a full 10 day regiment, 3 days before and 6 days after. (Extraction was the first step in the implant process.)
Question my friends.... I had a sinus infection two weeks ago and was given Augmentin for 10 days, my last dose this past Monday. Starting yesterday evening, ...Read more
Question my friends.... I had a sinus infection two weeks ago and was given Augmentin for 10 days, my last dose this past Monday. Starting yesterday evening, the same side felt like it had a lot pressure, and it's continued today. I just called my dr.... Of course it's the holiday weekend;) my question is, is sinus infection something to stress about immediately as to damage leading to infection of the heart. I still have my native bicuspid aortic valve, but 15 months out of surgery for my aortic aneurysm. I'm a worried beyond words. Thank you!
I have had some gastro concerns, so went to a gastro dr two weeks ago. She had a horrible cold, sneezed, blew her nose, and hacked the entire appt. sure enough, ...Read more
I have had some gastro concerns, so went to a gastro dr two weeks ago. She had a horrible cold, sneezed, blew her nose, and hacked the entire appt. sure enough, 3 days later both my youngest and I had a cold. Mine was short lived, but this week I've had sinus pressure aches and blowing my nose was quite unattractive...lovely...so sorry about that. I finally went into to see my np, and she feels it's a sinus infection and prescribed me an antibiotic. Well, I have a scheduled colonoscopy for next Fri., and I've actually heard of some yucky things happening on antibiotics after a coloconscopy. I' m so scared...petrified of something happening. I feel like to I try to get one thing resolved, but then another thing happens and creates issues of its own. I am terrified of something happening now. Literally, I feel like I'm in the middle of a whack a mole game. I try to hard to rely on my Dr.s and that they know best, but I don't have much to go on in this situation. So scared.
Phyllis Petersen How irresponsible of her! She should have worn a mask and done all she could to avoid infecting her p ... Read more
Phyllis Petersen How irresponsible of her! She should have worn a mask and done all she could to avoid infecting her patients, or she should have stayed home. I've never heard of problems with antibiotics and colonoscopy.
Marie Myers Ditto on Phyllis's comments. We often give antibiotics to patients having colonoscopy if they have in ... Read more
Marie Myers Ditto on Phyllis's comments. We often give antibiotics to patients having colonoscopy if they have indications for it, such as a recent joint implant or fresh artificial valve.
Carmen P I was given an antibiotic before my colonoscopy because of my valve. To be safe, call the doctor's o ... Read more
Carmen P I was given an antibiotic before my colonoscopy because of my valve. To be safe, call the doctor's office who is performing the colonoscopy. Relax, take a deep breath, it will all fall in to place
Shannon Gray This is reassuring...thank you! I'm in panic over the sinus infection leading to endocarditis and if ... Read more
Shannon Gray This is reassuring...thank you! I'm in panic over the sinus infection leading to endocarditis and if I addressed in time, the issues causing me to go to a gastro dr., and now the colonoscopy. Could anymore happen to create more anxiety? It is helpful to hear experiences...with colonoscopy or even if so eone' had a sinus infection and how it was handled. Thank you!
Phyllis Petersen I've had chronic sinus infections for more years than I can remember, so I wouldn't even connect them ... Read more
Phyllis Petersen I've had chronic sinus infections for more years than I can remember, so I wouldn't even connect them with anything else, except allergies. I've had several colonoscopies. Except for the prep, which is always a nasty process, there really wasn't much to them. You'll have gas afterwards, so don't plan to be any place you may feel embarrassed!
Shannon Gray Thank you Phyllis! Have you had sinus infections after your valve replacement?
Phyllis Petersen I had a mild one for a couple of weeks through Easter, but the worst of it was it brought on severe a ... Read more
Phyllis Petersen I had a mild one for a couple of weeks through Easter, but the worst of it was it brought on severe asthma. They doubled my Advair for 5 days to get higher steroids in me, which made a big difference. I've been nervous about taking pseudoephedrine after the surgery and, of course, forgot to speak to the doctor about it. It's hard not having that in my arsenal.
I was just looking back at the fold-out card they gave me and gastrointestinal procedures do not require antibiotics, only dental, but it's always good to double check.
Whack A Mole haha Shannon that title is SO spot on! I am with you it does feel exactly like that. So ... Read more
Whack A Mole haha Shannon that title is SO spot on! I am with you it does feel exactly like that. So Sorry to read about this and I am quite sure I would be pretty angry at that Doc too! Hope it smooths out for you, God Bless You My Friend !
I have had some gastro concerns, so went to a gastro dr two weeks ago. She had a horrible cold, sneezed, blew her nose, and hacked the entire appt. sure enough, ...Read more
I have had some gastro concerns, so went to a gastro dr two weeks ago. She had a horrible cold, sneezed, blew her nose, and hacked the entire appt. sure enough, 3 days later both my youngest and I had a cold. Mine was short lived, but this week I've had sinus pressure aches and blowing my nose was quite unattractive...lovely...so sorry about that. I finally went into to see my np, and she feels it's a sinus infection and prescribed me an antibiotic. Well, I have a scheduled colonoscopy for next Fri., and I've actually heard of some yucky things happening on antibiotics after a coloconscopy. I' m so scared...petrified of something happening. I feel like to I try to get one thing resolved, but then another thing happens and creates issues of its own. I am terrified of something happening now. Literally, I feel like I'm in the middle of a whack a mole game. I try to hard to rely on my Dr.s and that they know best, but I don't have much to go on in this situation. So scared.
Jeanette Davidson I hear you loud and clear!!! Feel the same way. Try to hang in there💓
Jeanette Davidson I hear you loud and clear!!! Feel the same way. Try to hang in there💓
Shannon Gray Thank you! I actually broke down pretty badly last night...the reality of living with this constant f ... Read more
Shannon Gray Thank you! I actually broke down pretty badly last night...the reality of living with this constant fear is just too much. Always waiting for the next shoe to drop.
Question regarding colonoscopies after valve/ aneurysm surgery, with
a bicuspid valve. Were there any precautions you needed to take...having to have the ...Read more
Question regarding colonoscopies after valve/ aneurysm surgery, with
a bicuspid valve. Were there any precautions you needed to take...having to have the procedure in hospital versus office or take antibiotics ahead of time? Any thoughts are greatly appreciated.
Vanessa Corwin I would advise you to check with your cardiologist about this
Civita Fahey You will surely need antibiotics. I'd ask your cardiologist or PCP
Shannon Gray I've checked with both my local cardiologist and cardio. where I had my surgery and both indicated no ... Read more
Shannon Gray I've checked with both my local cardiologist and cardio. where I had my surgery and both indicated no need for antibiotics. I just wanted to see what people's experiences have been. It's a bit nerve racking... And I always have a tendency to overthink things. Don't want that to diminish what I need to ask for in order to make sure I've taken care of any possibilities.
Catie B I've got to have one this year, too and understand there's no need for antibiotics for the procedure. ... Read more
Catie B I've got to have one this year, too and understand there's no need for antibiotics for the procedure.
Shannon Gray Catie... Are you doing it a center or a hospital?
Catie B Shannon, I'll probably do it at a stand-alone facility. That's what both of the local gastroenterolog ... Read more
Catie B Shannon, I'll probably do it at a stand-alone facility. That's what both of the local gastroenterologists I've seen use. I had an upper endoscopy at one in 2015. I was just reading about people who choose to go without sedation for their procedure; I didn't realize till tonight that that is an option.
MaryAnne Jardis Hi Shannon
I just had my colonoscopy after 18 months avr surgery. I can tell you my experience if you ... Read more
MaryAnne Jardis Hi Shannon
I just had my colonoscopy after 18 months avr surgery. I can tell you my experience if you want to chat. My email is jardismaryanne@yahoo.com. I can let you know what I experienced.
Hello all! I was worried my last post may have gotten lost, so I wanted to post my nutrition question. Having a bicuspid valve trpaired, I was told to avoid ...Read more
Hello all! I was worried my last post may have gotten lost, so I wanted to post my nutrition question. Having a bicuspid valve trpaired, I was told to avoid calcium supplements, as it may speed up the calcification process of the valve, but was wondering if anyone knew more. How about dairy or other foods that may cause this? Thank you!
Steven Dean Hey Shannon, I don't think the post was lost, I just think that no one really knows. My understanding ... Read more
Steven Dean Hey Shannon, I don't think the post was lost, I just think that no one really knows. My understanding is that the medical community has very little understanding about it.
Marie Myers Both my cardiologist and surgeon were not concerned with calcium supplements. However, I only take 60 ... Read more
Marie Myers Both my cardiologist and surgeon were not concerned with calcium supplements. However, I only take 600 mg calcium citrate per day and get the rest thru food.. I think maintaining a good diet and optimal cholesterol readings go a long way in preventing calcification of valves. Just my thoughts..
Barbara Wood Hi Shannon, I just read something on that the other day- the consensus was that calcium supplements c ... Read more
Barbara Wood Hi Shannon, I just read something on that the other day- the consensus was that calcium supplements can speed up the process, but that calcium from natural sources has no bearing. Like Marie I take 600 mg/ day, the rest from what I eat.
Lilly Black You bring up a great topic, Shannon. The first time I have ever heard of it was when I was diagnosed ... Read more
Lilly Black You bring up a great topic, Shannon. The first time I have ever heard of it was when I was diagnosed with BAV. My surgeon wasn't very concerned about it for me, although he did remove a small portion from my natural valve during my first heart surgery. But I am concerned for myself because even though I no longer have a natural valve, calcification plays a major role in the failure of bio-prosthetic and other tissue heart valves.
Interesting, Barbara. I will ask my doctor about this as well when I visit in May. Thank you.
Catie B Oh wow. This is certainly something I'd like to learn more about. No insights to contribute today, bu ... Read more
Catie B Oh wow. This is certainly something I'd like to learn more about. No insights to contribute today, but seems like something worth researching.
Shannon Gray Thank you all for your responses. It is an interesting topic, but I guess not too much is known about ... Read more
Shannon Gray Thank you all for your responses. It is an interesting topic, but I guess not too much is known about it.