Shannon's Heart Valve Journal

Seeing how allergy season is upon us, does anyone recommend allergy medicine that won’t interfere with heart rythem/blood pressure? Thank you!

An excellent article for those with bicuspid aortic valves from two leading surgeons at CC... one being my surgeon. https://consultqd.clevelandclinic.org/bicuspid-aortic-valve-with-aneurysm-guidance-for-tailoring-surgical-strategy/?utm_source=marketo&utm_medium=email&utm_campaign=cardiac+consult+04-02-19&utm_content=story1+title&mkt_tok=eyJpIjoiTW1GbE16Z3dNREl3T0RNeCIsInQiOiJNdnVZN2lmd3FcL1hWeVprQmNVM3BmR1pHVkxaTzBITjhqQ0pOOHhjbmlPbXYrWllWR1p5ZkpEZldjK0gzMnczamo1Z3RPcHRHaDRVdVhNWDI5YXk2QXpGRFwvOXN3TU1CbHMyOXpiaFhXOGp5b1V2aXlNblJpRmR6MXlCZ0xiU1FQIn0%3D

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!

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!

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.

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 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.

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.

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!

We made it happen! So thankful for an afternoon with heart sister Alina. The time together is treasured!

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!

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!

I wanted to share an email I received from American Heart Association yesterday. It's quite lengthy. Many blessings!

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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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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 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!

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, 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.

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.

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.

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!

Hello all! I haven't checked in much lately, but felt the need to do so this morning. Life has been life....I lost a childhood friend a few weeks ago to stage 4 colon cancer. She was my age, early 40's, with two beautiful young children. My heart was broken, and the anxiety and depression I've been battling set in with vengeance. Life is so precious, and so much we never thought twice about before our heart surgeries becomes significant.
I am such a "student", constantly finding ways to learn more and seek out research with various topics. I have always had an interest in wellness and nutrition, taught yoga for about 8 years, and continue to value my practice. I have a nutrition question for anyone who may have some more insight....are there foods/ nutrition that impact the degeneration process of our valves? I was told by dr. To avoid calcium supplements, but was wondering if dairy intake could have the same impact on calcification of valves, too? I would love some more information.
Sending you all love and light

I am still getting a charge out of Feb. 22 being chosen as National Heart Valve Disease Awareness Day... A date that marks my surgery to fix my aortic aneurysm and repair my aortic valve one year ago. I usually like to wake up early before anyone else and read, meditate, and mentally prep for the day ahead. I wasn't sure how I would feel going through this anniversary of sorts, as I still ride a wave of feelings and emotions from this journey, but I sat this morning looking out our sunroom windows marking my minutes by exactly what I was doing one year ago. At 6:15 am my tears began to roll uncontrollably, because that was the time my husband kissed me before they wheeled me to surgery. It all came flooding back; the fear, the love the surgical nurses and doctors showered me with right before, the physical pain I woke up to, and the grief of feeling so blessed to have made it through but still fighting with depression. I let myself feel it all... Then wiped my tears and got my precious babies up and ready for school. But that's life , right? Staying as present and in the moment as you can, allowing yourself to feel whatever it is, and then taking those next steps toward the future.
I still remain so thankful for this beautiful space to share and embrace each other in our various times of need. I value your kind and giving spirits. I have learned so much, and also hope to always be able to help in return.
I went back to Cleveland Clinic in the fall, so was due to check in with my cardiologist at home for my one year check. Since January was a wacky month for me with how I was feeling, I went in the beginning of the month. I thought I'd share an idea my cardiologist gave me since we could never determine if I was experiencing afib... They now have a program for your cell phone that take an immediate ekg. You have to register and there is cost ( a bit expensive). They'll send you a plate to place on the back of your phone. Where you rest your fingers, and the ekg will taken an recorded. Now, anyone experiencing anything close to afib should get medical help, but this was a way for me to immediately record to see if it was indeed afib. It's called AliveCor.
This is long write up tonight...please forgive me. I would like to ask about alert bracelets I've seen mentioned before. We are planning a trip in April, and I would like to have something like this with me.
Wishing you all much heart health and many blessings!

Just needing some thoughts...last late spring/summer I began to have heart flutters and my pulse would stutter, skip and then jump back into rhythm. When asking my cardiologist, he said it was an extra heart beat and to not be alarmed. Well, it subsided but late summer I had tachycardia something bad and they gave me a heart monitor to wear. Nothing detected, ( and of course nothing ever detected in cardiac rehab or my extended stay in the hospital following my surgery in Feb.) Fast forward to the past few nights where I've felt the fluttering, my heart kind of stutters and it comes and goes. I've spoken with the nurse and she does not seem concerned. I go in for my one year post surgery in a month, so she said just said to monitor and see. I keep thinking if this is afib? And of course I'm a worrier, so I think about all that could happen if it is Afib. She mentioned going to my pcp while it's happening and see if they could do an EKG, but the likelihood of that working out isn't so great. I still get scared, even one year after surgery.

Yesterday I celebrated 9months post surgery for my aortic aneurysm. I went with my oldest daughter's 3rd grade class on a walking field trip of our little town, and boy, walking all day was quite the "hooray" to celebrate. All in all, I am doing ok. I continue to have aches along the left chest or some days the right chest. I've noticed my position with sleep greatly impacts those aches and twinges. Every once in a while I will have a day where I feel like nothing has happened. The fact that I have a day like that gives me hope. The mental and emotional aspects of going through such a difficult surgery and having a challenging recovery continues to be my focus. I've just had to learn to forgive myself, to let myself feel the lows and allow myself to be, and then to rejoice when I'm feeling like a rock star. My nature is to do all and be all for my family and friends. It's a work in progress, but I've gotten a bit better at letting myself relax.
We flew back to Cleveland last week for an appt with my cardiologist there. Through my long list of questions, my Dr. said he''d see me in a year. My anxiety increases whenever I think about when I have to replace my bicuspid aortic valve, but he said there's no way I can allow myself to recover from this surgery if I continue to think about another surgery sometime in my future. Easier said then done, right? I walked through J6 and so many feelings came up, especially when I had to have an emergency 2nd surgery and stay in the hospital another 2 weeks. I did get to see my one of my most favorite nurses. She gave me the biggest hug and kept saying, "see, I knew you'd be on this side. I kept telling you, but you did it!" Amazing nurse and human.
On this Thanksgiving eve,I do have so much to be thankful for. Things may not have gone smoothly or the way I hoped, but goodness I am so blessed. Wishing you many Thanksgiving blessings and hoping this holiday is filled with your favorites.

Well, it has been a whirl wind summer and I was unable to post 6 months, but here I am after 6 1/2😀! Life has been full speed with two little ones. I recently had a follow up appt with my cardiologist regarding my heart monitor and ER visit. They couldn't find anything abnormal and he said he'd see me back in Feb! I plan on heading to Cleveland in Nov for a check in where I had my surgery. I also had my annual physical last week. I really love my GP, and I broke down when he said how proud he was of me getting through all of this. Words can be so healing. Lab work showed "benign leukopenia"... White blood cell count was low. I still don't fully understand this, and it was just to be rechecked in March. Anyone ever heard of such?
Emotionally I can say I'm still trudging along. I have my ups and I enjoy every moment. Then the lows hit and I let my mind go places I know I shouldn't. I panic about the day I have to go in for a valve replacement, I worry endlessly about the what ifs, I worry about my husband and children's health. Sometimes I just can't find the words, but I just feel like I don't know who I am anymore. I can't go back to being who I was with these scars, and I really don't feel like I can begin to take the steps who I am now.
I have also taken a big involvement in finding out more about Turners Syndrome, my condition. It's a spectrum of issues, with the main ones being infertility and short stature. I have spent 42 years not knowing any other female with this. One of the common issues is cardiac (bicuspid valve). In the past 10 years, there has been an increase in younger women with Turner's who have died from aortic dissection. It seems the enlargement was not found or not fixed in time. Thankfully, the medical field has slowly realized women with TS and an aortic enlargement need to have it fixed at a much smaller diameter and body size index than an average adult. This has led to another recognition in women with TS... Following surgery for the aortic valve or aneurysm repair, there have been deaths in the hours/days after surgery. A compromised lymphatic system is another issue TS females face. Everyone is pumped full of fluids following surgery, and it is being seen there has been a harder time in drainage and organ function due to the high level of fluid. Whew! I'm convinced I'm getting an honorary medical degree one day! Going through this past year has helped me understand how important it is to get the word out there to medical professionals and TS females. So many just don't know, and information is so limited and relatively new. In whatever way I can, I'm dedicated to helping others get through this. I continue to be so thankful for the valve blog and having such a caring community as support in going through our individual journeys. All my heart to you!

Well... The weirdest thing happened yesterday. I live in North Carolina and it has been hot as you know what here. I've spent the past 4 days attending a Turner Syndrome Conference and then running around getting my daughter's to several appointments and places. By 4 pm, I knew something wasn't right... My heart rate was raising up for no reason, felt dizzy and lightheaded. Every once I. Awhile I had trouble getting a full deep breath. I tried to chill out, but my heart rate was like a ping pong ball, going up and down. Drank plenty of fluids in case of dehydration... And nothing changed. After dinner, I went to walk my dog for a minute and. My heart rate shot up to 140... Yo yoing between that and 120. I finally threw up my hands and said we need to get this checked. The hard part was finding a friend/ neighbor to watch my girls. It was a looooooong night in the ER... Clearly they didn't feel a rush to do anything. After lab work, x Ray, and echo... They did find my blood test was indicating a possible blood clot. Panic set in, but after ct scan ( I'm so tired of those things...5 since Nov), everything was clear and sent us home with no found reason at 4:30 am. Trying to be gentle today, but of course the worry stays with me. 5 months out and this happens. I desperately want to put this behind me, but know it's something that will stay with me and I have to relearn myself all over again. Tired, but thankful.

Well, the tapering off of colchicine began 3 weeks ago and today is my first day off of the medicine for my initial bout of pericardial effusion which led to pericarditis. I was asked to call my cardiologist at the Cleveland Clinic, and I also called my cardiologist here at home. On pins and needles, but your many prayers three weeks ago have been a huge support. Well... Here goes nothing!

Very excited to have Cathleen's new book arrive in the mail. Everything looks scrumptious! You're talking my language, Cathleen

A little over 3 months of cardiac rehab and I've graduated! I am so thankful for such an incredible support team. I'm really going to miss them!

Happy 4th of July! I just felt I should ask for a few extra good wishes and prayers today. As I've mentioned before, I went back in the hospital for almost two weeks right after my surgery and had an additional surgery due to pericardial effusion. I came home mid March, and within two weeks of being home dealt with pericarditis ( could have been a reoccurrence of inflammation from initial issues). I have been on colchicine to treat this for 3 months, and today I begin my tapering off the medicine. I'm scared....plain and simple. There is always the chance it could come back and I feel like it hangs in the midst of trying to get back to being " me". Would you send out some prayers/ thoughts that I'm done with this mess once and for all? I'm so thankful for this wonderful group of support.

My beautiful big girl's last day of school! 14 weeks out post op and so thankful to celebrate with my two treasures.

I am looking for any insight on how to handle this... Ever since after surgery I have had a hard time taking a deep breath. Not short of breath, just tight and constricting along the pectoral muscles that make it hard to breathe deeply. I was told following surgery it was to be expected. I had pericarditis... Again, was told that may make taking a deep breath difficult. I am 11 weeks out from surgery, everything has checked out fine, they check my breathing and day my lungs are clear and my breath is starting deep down. It still continues... I am beside myself with understanding this. Of course I get nervous and scared not knowing I can't take a deep breath. I'm fine in the mornings. Could it be asthma? Should I see a pulmonigist? Has anyone experienced this far out from surgery? Any thoughts would be appreciated. Again... I had my aortic valve repaired and anneurysm repaired. Thank you so much! Just quite lost as to what I should and tired of feeling this way.

Dr Griffin and my big smile after 10 week post op appointment.

Flew in this morning to the Cleveland Clinic for my 10 week post op with my cardiologist Dr Griffin. All looks fine and the various " weird sensations" are apparently normal. Saw the nurses on the 6th floor and gave them a big hug.

Quick question... And I am checking in with my cardiologist this Tuesday, but does there have to be a rapid heart beat with Afib? I don't have that, but do feel my heart jump around beating every once in a while. Like bubbles in my chest, or fluttering.

Nine weeks after surgery, and I continue to stay in fear. There was so much anxiety leading up to surgery, but I made it through. I did experience complications after surgery, but I find that I wake up each day waiting to see what else could wrong. I still have shortness of breath... It subsided for a couple of weeks, but returned this past Monday. Does anyone continue to "look over their shoulder?" I go back to the Cleveland Clinic next Tuesday... And I am already anxious about this follow up appt. This truly has been such a roller coaster ride of emotions.

My Christmas present, who has turned into the best therapy kitty.

A few questions as we begin another week towards recovering... Approaching week7.
1. I had an aorta repair of an aneurysm and aortic valve repair... Does anyone with similar surgery still experience some tightness in the center and across the left pectoral side when taking a deep breath in?

2. I would love to be in touch with anyone who experienced pericarditis.

3. Any moms of young children? My youngest is 2... I'm approaching week 7, and my husband still remains worried about me being home with my 2 year old by myself. It's been a source of stress between us... I've had caregivers in the home wither helping and assisting. I'd like to find a sense of normal, but unsure of timing. 2 year olds are u npredictable and can sometimes have their own agenda:)

Thank you so much!

This past Monday brought me 6 weeks out from surgery. I have decided to look at my recovery based on week to week versus day to day. I was told no driving until 8 weeks out, and it will be here before I know it. I attended my orientation for cardiac rehab yesterday, and now waiting to find out what insurance will cover and the cost. I hope to get started soon. I was an avid runner/ loved to exc., but need to build my confidence up before attempting anything. I feel the biggest challenge now is continuing to be "Mom", but still not able to do all entailed with that responsibility. I am so blessed to have such wonderful help, but sometimes that can add to the confusion with my youngest one. I'm feeling ok, but continue to claim my rest time... Even if it's reading quietly or coloring.One thing I've noticed is my "what's next" and fear of what lies ahead. I'm 42, but the anticipation of another OHS down the line Is already taking over my thinking. I have a few questions for others who may have experienced some similar situations. I know that we all recover differently and I am in touch with my Dr when needed, but sometimes it helps just to hear from someone who has gone through the same feelings or complications.

1. I experience occasionally tightness when taking a deep breath... Mainly along the upper chest or pectoral muscles. I've brought this up continuously with my Dr.'s, but they don't seem to make too big of a deal about it. It's really weird... But I've felt this way for most of following surgery.
2. Anyone else experience pericarditis? After surgery I experienced pericardial effusion, a second surgery and hospitliazation to drain the fluid. Last week I was found to have another flare up of pericarditis. It scares me this continues, and just don't understand it.

Sending my best to all!

I have been coming to this website for a few months, now. I have already had my surgery, but continue to visit regularly due to the wonderful support and community that is shared. It's been a lonely road for me... Thankful to have found this site. My journey begins a while back... I have Turner's Syndrome, in which a common congenital heart defect is the bicuspid valve. My valve has never been giving me any issues and always remained mild. However, aortic aneurysms can be a result. The size of my aneurysm was repaired at 4.0 cm. once it reached that size this fall, I was highly encouraged to have the aortic repaired. The size of aneurysms with the Turners population is much smaller than an average sized adult. We decided after a second opinion at the Cleveland Clinic, to have the surgery done there. So much anxiety! I have two young daughters, so my main focus was to have very thing in line for them. My surgery was successful and I was discharged 5 days after surgery. I was experiencing tachycardia and fluid in the lungs at the time of discharge, but was told so much of that works itself out. Well...less than days after discharge I began feeling so weak, sweating, feverish, couldn't breathe, and almost unable to even get up. We were still in Cleveland in our hotel, hours before my clearance to go home appointment, and my husband called 911 and I was taken to the CC ER. Hello pericardial effusion! Never knew about it or why it happened. I was in ICU for two days, and then finally had surgery. They completed a pericardial window and emptied almost 2 liters of fluid. Have I mentioned I'm 4'10"? I was heavily sedated for most of that week, but finally started coming to 2 days after surgery. I had 3 tubes continuing to drain and spent close to two weeks back in the hospital as they monitored the drainage. Due to air pockets in my lungs, although resolving them self, we chose to rent a car and drive home. We were away close to a month!
I have been home 2 weeks recovering and began to have issues with pain in my chest and the pain effecting taking a deep breath. I went back to my cardiologist today to find I now have pericarditis. It seems like my body is still pretty upset about the initial surgery. I'm fearful and so scared of the inflammation continuing. I just want to be able to recover and get closer to finding my new normal. I am 42, active, and on the go with my family's schedule. This has been a huge struggle for all of us, and these set backs make me question what else is ahead. I made it through the initial surgery, but can't seem to find the light at the end of the tunnel. I'm so thankful for this space where we can share, support, and encourage each other. No one can truly understand what it is like unless you or your loved one has experienced OHS. Thank you for this space!