ConNie's Journal

Robert Miller  Yay! Getting those chest tube outs make a big difference. It still take time for the bones to mend but it all gets better. 

Rita Savelis  Hi Connie, I had my aortic and mitral valves replaced with mechanical valves 9 years ago. During that same surgery, the surgeon reinforced my tricuspid valve with a ring (because he knew that tricuspids sometimes are affected later when the mitral valve is worked on). I'm sorry that you have to go through a second surgery. I read your story and am so happy that you were able to have your children, despite your heart valve problems. Rheumatic fever and childhood cancer (Hodgkin's), which I had, are the two main causes of multiple valve problems that occur years later. I was 53 when I had my triple valve surgery and my 2 children were already young adults. You are amazing Connie and I wish you all the best.

ConNie Romo  Hi Rita, thank you so much for your reply. I appreciate it a lot. It’s such an encouragement to hear from others who has similar condition as mine. It gives me comfort that I’m not alone in this. 

Andrea Smith  Well done! What an achievement. I haven't got such plans but my motto is that I didn't go through all this (two AVRs) to sit around doing nothing. It just shows that we can be fixed!

ConNie Romo  Thanks Andrea. Being able to do some things now that were impossible before makes my life a little more fun.

ConNie Romo  Thank you my ❤️ sisters Lily, Bonnie, Rose, Shannon and Civita. You all are an inspiration to me! I'm grateful I have an online family who understands my ❤️ journey.

  Happy Birthday ConNie! Hopefully it's something not related to your surgery. Maybe you just have a chest cold or allergies, it's the season for allergies. Feel better soon, take care.

Shannon Gray  Happy birthday, Connie. Prayers what you're going through is quick lived...thinking of you! Keep us posted!

ConNie Romo  Thank you guys. I was able to get an appointment tomorrow morning with my heart Dr.'s PA. I also started getting dry cough spells just this evening, not sure why. My energy level is still low and I drag myself out of bed to take care of my toddler son throughout the day which is not fun when you're not feeling great physically.

Craig Wise  I wish you best Connie. I hope you have quick answer and feel better soon. Thank you for staying in our community one year post-surgery.

Steve Farthing  FYI - I just posted a comment here and it appeared here and then went away a minute later after you posted the photo. Anyway, maybe time to see an ENT doc. (Once I went to an ENT for dizziness and turned out my thyroid medication was too low!)

Shannon Sullivan  how is your INR? Since my surgery I noticed my ears get weird when my INR is not at the right level

Cathleen Weed  Auditory issues can often be medication related. I don't know if you take any daily prescriptions but if so it's worth researching the side effects...especially considering the worsening of a pre-existing condition.

Lilly Black  Connie, I'm sorry that you are experiencing these side effects. I also have suffered with major tinnitus over the years...so annoying and debilitating! Although I don't take any meds, except for 1 daily baby aspirin. But when I was suffering of migraines, my preferred meds was Fiorinal, (classed as a barbiturate), which I was taking for over 30 years but only on onset of a migraine. I hardly take them anymore because the migraines have subsided substantially. What I have been noticing is fluid is flowing out of my ears during the night when I lay on my side. It actually helps a lot, reduces tinnitus and dizziness. I have also suffered of vertigo over the years time and again. I have had different side effects which I have learned to live with, but I can say I am feeling so much better after 2 years post surgery. I hope you find some relief! good luck!

Stephen Phayre  Wow - I have just had an ENT visit 3 months post op for AVR. I have a ringing in my head (about 8kHz) that pulses with my brain on every heard beat! This is totally new to me and the ENT said that I probably just have to put up with it for the next 6 months or so. His thought is that my brain is getting used to the new sound of my clicking heart (mechanical valve). I've wondered if anyone else had the same type of thing!!

Kelly Weisgarber  Hi there. I've not been on this site for months but your post caught my eye. I had my aortic valve repaired 11-16-15 and have had similar symptoms that you describe since 4 months prior to my ohs. Head pressure- light headedness and my tinnitus is with the beat of my heart- called pulsatile tinnitus. My cardiologist thought it was related to my valve issue and that it would go away. It didn't. It's louder now than it ever was. It's non-stop 24-7. I've seen ENT's, two neurologists and had an MRI and MRA and even had a cerebral angiogram- I still don't have answers as to why I feel this way. I only take a baby aspirin too. Wishing you luck- and keep us posted ❤️

Phil Gerber  I had my Aortic valve repaired 11 months ago, and currently experience tinnitus in my right ear that started about two months post surgery. I was on a high dose aspirin only for two weeks post surgery and just a daily low dose since that (no other meds). It seems more then coincidental that so many of us suffer with this post surgery.

Stephen Phayre  Yes - I'm really interested now that I hear that more people have the same situation (and it sounds like we've been told "it will go away" but I wonder what is going on...). Kelly and Phil, do you have mechanical valves now?

Stephen Phayre  On thing - is anyone else taking Lisinopril? I just found this: http://www.livestrong.com/article/234385-lisinopril-side-effects-with-ringing-ears/

Kelly Weisgarber  Stephen- no. My aortic valve was repaired. No mechanical valve (not yet anyway) and my pulsatilla tinnitus started BEFORE my ohs. My cardiologist thought it was related to my aneurysm and would go away once I was healed but it didn't. I know tinnitus can be a side effect of many drugs but usually if it's with the beat of your heart there's an underlying vascular reason. It's been almost two years for me and it's very hard to sleep and think clearly sometimes.

ConNie Romo  I don't feel it's getting worse. Thanks Cathleen, you have calm my worries. 😀 I find myself getting a little bit paranoid now when I get sick. I'm constantly thinking about the new valve😊

Cathleen Weed  You'll feel that way until you go through everything at least once with the new valve. Then you'll realize it's pretty much life as usual :). I was the same way. Hope you are feeling better! Vitamin D3 is always a great immune system builder. I take it daily (2000 iu). xoxo

ConNie Romo  Thanks Denise and Cathleen.
I just recently started taking vit D3. I haven't been able to go walking since it became too cold to go outside. I'm scared to go walking by myself because of that case of a woman's ( Sherri Papini) abduction here near our place while she went jogging . I need to do more indoors exercises.

Rita Savelis  You probably should see a regular doctor (not necessarily a cardio) to have this virus checked out. It's a good idea to take antibiotics with any infection (after OHS), even viral, so that if bacteria does develop, itdoes not get into your new valve.
Hope you feel better soon.

Shannon Gray  I agree with Rita...get it checked out by ur go, but also put in a call to your cardiologist to share. I actually just talked with my cardio.'s nurse yesterday and she said anytime an antibiotic is prescribed, they would like to take blood cultures to keep a close eye on any infection and to watch the heart. Wishing you well and hope you feel better soon.

Cathleen Weed  Sounds like classic bronchitis. Not likely to cause endocarditis. Bronchitis can be viral or bacterial so get checked but don't worry too much. Endocarditis is caused by a different type of bacteria found mostly in the mouth (gums), or through untreated skin sores, catheters that introduce bacteria, or needles (piercing skin...like tattoos) . A bigger concern is that bronchitis can turn into pneumonia. 💛

ConNie Romo  Thank you all my heart sisters for your advices. I will call my PCP today. Coughing all thru out the night is no fun😩!
Wishing you all very Merry Christmas and a blessed New Year!

Lilly Black  Happy Birthday! and happy you are recovering so well! that's a gift in itself. Feeling bored is a sign of how great you're doing! sounds like you're ready to have some fun on your birthday! Enjoy!

Cathleen Weed  Congrats Connie!! Did we talk about having the same birthday????!!!!!! I just celebrated my big 4-5 on 7/26 lol. That's why I've been off of here all week! Super busy! So happy you are healing so well 😘😘😘

ConNie Romo  Awww...Cathleen, are you serious? My mouth just dropped open followed by a grin from ear to ear😀👍🏼 I'm tickled and happy to share birthday with you! Now we have added special bond😁😍! Belated happy birthday to you my forever heart sister!

Wanda Mroz  Exactly, take it slow. One step at a time. You don't want to overdo it. You look wonderful! Glad you are doing so very well... your HR is better than my atrial flutter HR!! Take care...keep us posted.

Ron Broadhead  Wow, fantastic progress. As Wanda says, take it slow. The time will pass quickly and before you know it your walks will become longer and longer.

Lilly Black  In my first surgery, I coughed a lot! not so much my second surgery. I don't recommend walking by yourself, not yet....I walked by myself but that was in the hospital and in my house. I walked a lot!! I used cold packs on my incision but not until about 4 weeks post surgery. I have used Neosporin for Pain on the incision, which is also an antibiotic pretty much in my second week. But do speak to your doctor....but those are my opinions based on my experience! Hope this helps.

Cheryl Ventimiglia  I had a terrible cough once I got home. My husband had one while I was in the hospital, which I caught.
Found my inhaler worked. Went to my pulmonary specialist and he gave me a stronger inhaler and I can breathe again. There's nothing worse than having to cough after OHS.

Wanda Mroz  I did not cough, but I think it's probably good to keep the lungs clear. You may have allergies. So soon after surgery, I wouldn't walk along outside. You could get dizzy or something. Better to have someone with you until your stronger. Good to hear you are otherwise doing good! 💞

Alina FH  Connie, I think the scratchy throat is normal, from the tube. I had it also. I would definitely say to not go walking by yourself for a while, till you feel stronger, like Wanda said. I am so happy you are doing well.

Rita Savelis  Scratchy throat is normal. Pillows are wonderful. I still use mine.
You might just let that incision have a bit more healing time.
One week is so very very very early. You are amazing.

Cathleen Weed  The throat irritation is from being intubated 💛. Just normal healing. You can walk alone as long as you aren't having dizzy spells 😊.

Joshua Trimberger  glad to hear your surgery went so well! My actual surgery went well. I had a lot of internal bleeding that was drained out. I spent 5 days in the ICU and got transferred to the regular hospital last night at 11pm. I am getting discharged Tuesday. I am still having issues with fluid on my right lung and I'm having bouts with tach they are worried about. First three days in ICU was the worst pain i have ever felt. day 3 I had to have a NG tube placed through my nose into my stomach and had that for 15-20 hours. but the next i felt much better and finally wasn't in so much pain! have a good trip home and home your recovery continues well!

ConNie Romo  Wow, Joshua your start was a little rough. I'm glad you are feeling much better now. I wish you a smoother recovery from here on onward!

ConNie Romo  Hi Kate, I am feeling good. I don't really have any pain, it's more of a feeling of heaviness and tightness in the chest when I take deep breaths so I only take Tylenol as needed. I have a little bit of a challenge sleeping at night due to my restless leg syndrome and just trying to find a comfortable position. I found sleeping on my back on the bed is what works for me right now. I've looked into renting a power recliner but none is available. My appetite is back. I take a couple long naps and walk as much as I can. I'm working on my spirometer too to keep my lungs stronger. Overall, I'm progressing beautifully well😀🙏🏼❤️👍🏼

Richard Puckett  You're doing great! I, too, had to wait for a step-down room to become available, but not too long. I hope your nausea doesn't cause you any problems. I was lucky and didn't have any problems with nausea. It would not be fun.

Petey Bello  Connie, glad you are doing well after surgery. Maybe you can ask if they can give you "Zolfran" for the nausea. I was so sick for a week after surgery, nothing worked until they gave me "Zolfran". I was like a new person.

Good luck, take your time, don't push yourself to much...

Cathleen Weed  Yay!!!!! I had terrible nausea from the pain pills...went off them completely the second day and felt so much better. I'm so happy you are feeling better! I can visit once you are in a private room. Let me know!

Lynn Whipp  So glad you are doing so well and pray the nausea subsides very soon, if not already. You must be relieved, things are looking up for you!! All blessing and prayerss!

ConNie Romo  I decided not to take Norco anymore only Tylenol and I felt so much better. What I noticed though is I break Into this cold sweats and felt flushed. I had a migraine headache when I got to the step down unit which I didn't expect. I'm working on my spirometer , the goal is to make 3 balls rise and hold it for 2-3 sec. I can only make 1 ball rise as of now 😀
Cathleen,I'm in a private room now. In 6030 North Tower.

Wanda Mroz  The pain pills can trigger migraines as well... They do for me so hopefully you're nausea will decrease. Glad you are coming along. It does get better... Just takes a little time. Hugs💞

Cathleen Weed  Connie..have they told you when you might be released yet? It would be ideal to come up tomorrow (Sat) if you're going to be there <3. Although I'm sure you would love to go home now!! I'll call your room later! xo

Cathleen Weed  Saw Connie today at Cedars Sinai <3 She looked awesome and is doing great!! (SO good to see you Connie!)

Ron Broadhead  Sounds like you are doing quite well. Glad you are walking increasing distances. Getting out of the ICU is a big milestone.

Richard Puckett  You'll do well! It's not fun but it is bearable. I was worried about not getting a good night's sleep, so I took a couple of benedryl, with my surgeons approval, and slept well.

Lynn Whipp  What a precious story of the Lord's grace and leading for you. I can only be but somewhat envious that the decision for your heart surgery is totally not elective but you have much physician support. Mine is elective but am planning to take the Duke surgeon's advice. I will be excited to hear a good report from you post surgery. I am sure you will be glad your dear toddler is in good hands and your husband can focus on you and you getting into the swing of recovery. I hope your friends (or relatives?) will help in the ensuing weeks as well. Have you heard Danny Gokey's song, Tell Your Heart To Beat Again? Found on You Tube.I KNOW it is God's heart to heal and restore you. He spoke to my heart he would heal me in the presence of these surgeons. And to trust him and not be afraid. Also that this would be, "the perfection of (my) faith")). Truly. Isn't that true for both of us both? I think so. A big trust exercise. Especially with my elective surgery. I bet you are very dear to your family. Take care and be patient with your healing. Good you are here. Keep in touch, okay? You have my heart for you, keeping you in prayer! Lynn Whipp

ConNie Romo  Thanks Lynn. Yes, this is indeed a living faith experience! I know our God is faithful and all I have to do is look back on how He has led me in the past and that I can trust him with the future! Will post update when I'm able or my husband will be the one posting!

David C  Common! We'll have some badass scars afterwards...not to mention quite a few more decades on this planet than we'd have without it. :)
You can do it. You've got this thing. I will share what one of my friends just told me to do "Go crush this surgery." :)

Cathleen Weed  p.s. will you be in a hotel in LA on Monday 11th? Would you like to meet somewhere that day to talk?

ConNie Romo  Hi Cathleen, everything went well. I'm all set and ready for Tuesday. I'm staying at my sister's place in Glendale. Sure I can meet you on Monday.

Cathleen Weed  Okay! You think about it because I know you have a lot going on! Let me know if you think it will work out for you and whatever your sister has planned that day. Can't believe it's right around the corner! You are in EXCELLENT hands with Dr. Trento! My business email is hearthealthylifecoach@gmail.com if you want to write to me there and we can figure something out! xo

Lynn Whipp  So I am thinking you are home now. Pray you are still doing well and continue to get stronger week by week!. Bee good to yourself!:)

Barbara Laurie  Dear Connie, Frankly I don't have kidlets, but I DID just spend many weeks in the hospital after OHS If the care he can receive with your friends is great, and you feel he will be safe and cared for leave him there, to FaceTime or Skype with you later. Sternum precautions last quite awhile, but those days in hospital are to make sure you're stable, recovering and ready to go home, no sense worrying about your precious boy, and you will still need to get home, and I know your partner will be focusing on you. At almost two, this may be tough for him, but being apart now for this important surgery will mean lots of time together for your whole family and you later! Best Regards for a healthy future❤️💕❤️

Denise Campbell  I think you should leave him with friends. It would be very difficult to care for him and concentrate on yourself. Especially for your husband And they won't let him in your room in ICU.

Cathleen Weed  I agree that you should leave him at home. You'll need to focus 100% on recovery and your husband will need to focus on you without the added stress of a toddler in a new (and non-kid friendly) environment. If you take him I believe you will wake up from surgery and wish you had left him at home. Neither of you (your son or you) will be able to do anything positive for each other and it will leave the burden on your husband. It's best for everyone involved, including your son, to keep things as normal and routine as possible so that you can heal (which includes rest/sleep!). If he is with you it will disrupt that pattern. You can always Skype :). Don't feel guilty. You have one chance to do this right, so take advantage of all the help. <3

Cheryl Ventimiglia  You and he will be more comfortable if he stayed in familiar surroundings. You can always FaceTime him when you're up to it. I know my 15 month grandson would rather be running around playing with his toys than in a hospital. Sending prayers your way. I can't imagine how stressful it is for you.

Petey Bello  I agree with everyone. I would leave your son home with people you trust. Your husband will need the space to be able to concentrate on you (& himself). Good luck to you!

Shannon Gray  I am 16 weeks out post surgery, and I have a 2 year old ( plus a 9 year old). My in laws and my mom took turns caring for my girls. I did end up having a complication and back in the hospital for almost 2 more weeks. I had my surgery in Cleveland... Quite a ways from home. Although it was heartbreaking and probably the hardest thing I've had to do, I am so thankful my girls stayed home. I was in no shape to be on "mom alert", and my husband's sole focus was on getting me through this. Like I mentioned, it was heartbreakingly difficult to not have them with me, but with all I went through the hospital was no place for them. My mom heart goes out to you. Recovery was made a little more challenging once I got home because of the dynamics of having young children. I have had my fair share of mom guilt and became quite frustrated as to '" why I couldn't go back to doing the things I'm supposed to do", but I can promise you will get through this, your children will learn so much about nurturing their mommy, and you will get back to doing the things you love with your baby. My mom heart goes out to you! Sending you best wishes for a successful surgery and a positive recovery!

Darlene Smith  I think earlier surgery date is better because you don't have months to dwell. You will be post surgery in no time and hopefully on your way to better!

Kate Watson  I know I remember keeping myself so busy trying to prepare beforehand, which was tough with minimal energy. But it was also good for me to keep myself preoccupied and feeling in control. Glad you got your date scheduled, it will be over before you know it!

Petey Bello  I agree, I think having the surgery sooner rather then later is better. Hang in there & take one day at a time...

ConNie Romo  true, sooner is better. I'm at a point where I want to get this done and over with and start on the road to recovery and feeling better. I can't wait to have more energy so I can take care of my wonderful, super curious and active toddler boy😀

Emily Rowley  That is great your Surgeon is on board, esp as some Doctors are stuck in their own ways/try make decisions for you. How did your Stenosis start and progress? How is your Mitral Valve? Take it easy, it will take awhile to feel upto much but we all recovery at different paces. All the best ☺

Cathleen Weed  That is awesome! I knew you would like Dr Trento 🌅. He is amazing and is all about quality of life and the TAVR future. 💛 I'm really happy for you and will for sure visit. Really wish I could have seen you June 6th instead of my meeting in San Diego 💛. Happy it all worked out!

ConNie Romo  Emily, my initial diagnosis for the aortic and mitral valves were moderate stenosis. After 22 years, the aortic valve now has severe stenosis with mod- severe regurgitation. Both of my atriums has mild enlargement as well, there is also mild stenosis on the tricuspid valve. The balloon Valvuloplasty procedure in 2014 has significantly improved my mitral valve function. It has mild regurgitation now.

ConNie Romo  Cathleen, I'm very impressed with Dr. Trento. I find him like a father figure. Initially, he thought of doing TAVR for the aortic valve, to buy sometime and avoid OHS for awhile but he was told insurance won't pay for it since I'm not a high risk patient. I feel like that would have been a good option for me. I'm still happy with his plan. I'm hoping the mitral valve will last as long as the tissue valve before I will need the TAVR. I'm hopeful though that by then TAVR will be a pretty common procedure I will not need another OHS. The future is bright and technology is on our side in terms of advancements in heart valve surgeries.

Cathleen Weed  Exactly :). I'm so glad you met with him. He really is very much like an Italian father figure <3. His patients always do really well. I feel very blessed to have had him for my first 3 OHS, and now also his colleague Dr. Makkar for the TAVR (best in the world). You are in excellent hands!

Kate Watson  Hey Connie, I did want to ask you something about your mitral valve. They chose to leave my mitral alone also when I had my first aortic valve replacement 11 years ago. But then it got to a point where it was so diseased that it couldn't be fixed. So, as you know, I had to have both valves replaced this time when my aortic tissue valve declined. I'd just encourage you to be sure you know what the plan is regarding the mitral - because I held out hope over the years that mine could be fixed, but then my only choice was replacement when the time came. I'd hate for you to have to have a double valve replacement later on if it could be avoided. I just wanted to mention that.

Cathleen Weed  Connie and Kate...one thing I know for sure about Dr. Trento is that he will look at everything up close when he's in there and decide what to do at that point. He's an expert at what he does :). What Kate says is true...but I also know Dr. Trento well enough to know that he will look closely at that mitral valve when he's in there. xo

Rita Savelis  Well, the problem with double valve surgery (for a younger patient) as opposed to single valve surgery is that you have two valves that may wear out (tissue valves) at different times. So you may need surgery again for one while the other is okay....And then surgery again for the second one. I'm sure there are patients who have double tissue replacements though, and your surgeon will know how to advise you and what he recommends in your specific case. Your case is singular, as is every case, so comparing to others experience does not always work. In my case, as I have scarring due to childhood radiation treament for cancer, the chest area (inside) is a mess of scar tissue and it's not easy to operate, with complications that occur, so the best decision for my particular case was to have less operations. It was highly recommended by surgeons specialised in former cancer patients with valve problems.

Ashley Molyneaux  Would there be a way you could have a mitral valve repair and aortic valve replacement? Not sure if you'd be a candidate but that's what I'm hoping for, for my double valve surgery.

ConNie Romo  Ashley, from what i understand the surgeon said he probably can repair the mitral and replace the aortic. The reason i asked coz i'm not sure i've come across a member here who opted for tissue valves with their double valve replacement .

Diane Capece  I know how you feel. I also just found out I have 2 tears in my rotator cuff and 1 tear in my biceps. Apparently just from wear and tear and arthritis. I went to physical therapy for a few weeks but now just going to do a home exercise program. Not seeing the heart surgeon until June 29th. I am going to hang in there with the shoulder problem so that I can take care of my 3 leaking valves first. Unfortunately, too many things going wrong at once, but we must take care of things one at a time and hope and pray for the best. I wish you well with your appointment.

ConNie Romo  Yay 😀. I used to live and work in LA. I've had patients near Cedar-Sinai (west Hollywood area) before. I have family and lots of friends there too. If everything works out with Dr. Trento, I know I will be ok since I have a large support network down there.

Cathleen Weed  Oh good!! I'll visit with you also (if you'd like) if you decide to come down :). I live in Huntington Beach and was born in Hollywood. I'm in LA all the time <3. Here's my 2 cents...I do think Dr. Trento will also recommend a mechanical valve but will also be open to your desire to remain coumadin free with a tissue valve. It's a very progressive hospital and cardiac team so they are up on all the new technology. If he feels like you can possibly have TAVR down the road then he will be more open to it ( I know there was some question as to whether you'd qualify later ). It's all about how willing you are to face another valve replacement down the road. Personally, I'm "quality or quantity" when it comes to life. I know that I borrow time between each surgery, but I also know they are coming up with new and amazing ways to replace valves (like TAVR) so I'm willing to play the game. I keep myself very healthy and strong (physically and emotionally) so that I can easily face another OHS if needed. I don't have any restrictions since I only take a baby aspirin. I personally love it because I am very active with travel around the world, working out, outdoor sports, my dogs, horseback riding, winter sports, even surfing. Most of that wouldn't be allowed on coumadin. I was so young when all this started (19 and 22 at my first and second OHS) so a tissue valve was pretty much a given those times...the last couple have been more of a decision on my part (age 33 and 44). Most days I feel like I've pretty much never had surgery...let alone 4 valve replacements...so that's the place I'm coming from. I might be a bit unique because I'm just so used to it, but that's just how I feel. I just wanted to share my feelings in a little more detail so you understand where I'm coming from...it's not for everyone to get re-do operations, but it's doable. I just figure I can always get a mechanical valve way down the line if I really have to (but I may not now with TAVR technology...we'll see!) and I will have had all these years coumadin free. That's not to discourage others from getting a mechanical valve...it's just how I feel based on my own life. <3

ConNie Romo  Sure Cathleen, would love to meet you in person. It's always reassuring to meet another heart sister. Thanks for the heads up. I think I settled with my choice of surgeon too soon. I owe it to myself to get a second opinion. I don't want to have any regrets after this is done. It's going to be a major event in my life and I want to go thru the procedure happy,at peace and without any doubts and what ifs.
I will Let you know once I get my appointment. 😀

ConNie Romo  Hi Cathleen, my appointment got rescheduled to June 6, 1:30 pm. Hope you are still available to meet up with me.

Cathleen Weed  Hi Connie! I spent the last 4 days up in Big Bear at the lake so I haven't been online much. We got home last night. I was wondering if you were down here! So it's June 6th now..aren't reschedules fun?? I do think I will still be available. I'm actually up there June 9th for a whole valve work-up...echo, CT scan, labs, etc...too bad it isn't the same day!! Let me check my schedule today and let you know! :) Hope you are doing well and hanging in there!

Cathleen Weed  I have a lunch meeting down in San Diego on Monday that I haven't been able to reschedule :(. It's for my new book, so I can't miss it. What is your schedule while you are here?

Cathleen Weed  My bicuspid aortic valve was congenital but I did have a double valve surgery once (my second surgery). I had my pulmonary valve replaced along with my aortic valve, both tissue valves. The tissue pulmonary valve has been in there since 1994.

Kate Watson  Yes, I have it too and just had both my mitral and aortic valves replaced. I wrote you a whole long thing on your other post, but I know it's a very tough decision. I had my first OHS at age 29, where they just replaced the aortic but left the mitral alone because it wasn't bad enough. I went with a tissue valve then but just got 2 mechanical valves a few weeks ago. I want to also say to consider getting multiple opinions from different surgeons. I talked to 3 surgeons this time and they all had some differing opinions. But I went with the surgeon I felt the most confident in and who I felt listened to me. Do you recall having rheumatic fever as a kid? For me, it is very mysterious because they say it's not very common in people my age. I found out about this at age 18. But I never had rheumatic fever that I know of and my parents don't remember me being that sick either. So strange.

ConNie Romo  My aortic valve needs to be replaced and mitral valve is still repairable. From what I understand because RHD is a disease process it not only damaged the valve but may also have damaged the area around the valve and I have an increase risk of problems with heart conduction after surgery and might need a pacemaker. What I don't get is why I'm being discouraged to choose tissue valve.
My thought is, since mitral valve is not going to be replaced yet I'd go with tissue valve for aortic now. I know another surgery is certain in the future to replace mitral valve once it deteriorates and I'll deal with mechanical option then.
Sorry about my ramblings.😔

ConNie Romo  I got diagnosed when I was 18 y/o too. Like you, I have no memory of having rheumatic fever when I was young. It was a surprise to me and my parents. It was a nagging chest pain that prompted me to see a cardiologist. It's been almost 22 yrs since my diagnosis and over the years they just monitored me. I knew I would need surgery in the future but not until I had my second child that it became urgent and serious to warrant a surgery. Though for the past 2-3 years I can feel more lightheaded and easily fatigued. I know he time has come for me to get it done. Thank you Katie for sharing it made me feel that I'm not alone , that someone understands what I'm going thru.

Denise Campbell  I was also diagnosed with RVD. I had my mitral replaced with mechanical. My surgeon said my valve was too far gone to be repaired and recommend mechanical because I'm 50. Coumadin will be a pain, but doing this again would really stink. Seems like the tissue valve last 9 years or so. Especially in younger patients. I don't remember ever being sick as a kid and my mother is gone so I don't have any other info. I guess it doesn't really matter. Good luck.

Kate Watson  Wow Connie, our stories are so similar! I had my son when I was 18, and they think the pregnancy may have accelerated the process. I went to the doctor for a cough and was told I had a murmur and needed an echo. I was devastated to find out I had this valvular disease. I was followed for nearly 11 years until I needed surgery. Part of the reason I opted for a tissue valve was because I always wanted more kids. The surgeon told me that would be ok with a tissue valve. But after having the surgery and upon seeing my cardiologist, I was warned not to have any more children because it would be very dangerous with my diseased mitral valve. I went to several cardiologists over time and they all said the same thing. I still do not know why they didn't fix my mitral valve when it had the chance to be fixed then. But it was so badly diseased by the time I had my surgery a few weeks ago that it had to be replaced. I would really urge you to get a second opinion if your gut tells you to get a tissue valve. You need a surgeon who will support your decision.

Tafang Kuo  I can related to how you feel. I am at the age of 34 and have to make the same choice. Have been dancing with my own heart valve situation for the past 15 years. Have been see so many doctors both in Houston and in Taiwan, and still don't know to go with which one since none of them really can offer a satisfying solution. The Dr. I finally to choose to go with my heart valve replacement told me that he would suggest to have the bovine pericardial valve first and after 15-20 years, I can have the choice of have TEVR replacement and it can last another 15-20 years. The reason is because the valve is build with bovine pericardial and have the flexibility to stretch out when they insert the TEVR valve. But for mechanical valve, since the material is stiff, it doesn't allow this possibility. Not sure if we are having the same health situation. It is such a huge stress you are carrying. Hopefully these information can help.

Cathleen Weed  I'm very sorry to hear that today was so frustrating. Please know that this is all very normal. It is a huge decision and I was pulled in different directions even up until 2 days before my last surgery. Let yourself process everything and give it a few days. 💛 Any decision you make will be the right one.

  Hey ConNie! Personally, I was on a blood thinner (Coumadin) before my aortic valve replacement surgery, so a mechanical valve was a no-brainier for me. What I can suggest to you is that after reading a lot of information and from personal experience of taking a blood thinner everyday it is now second nature. If you were to choose a mechanical valve I am sure in time, you would get used to taking a blood thinner. The other noticeable difference and obvious difference is the clicking noise that the mechanical valve makes. This hasn't been so much of an issue for me personally. My girlfriend has mentioned it while we lay in bed, when she lays her head on my chest but to be honest I haven't lost sleep over the noise.

Definitely take your time with your decision and consider the pros and cons. I just joined this site not too long ago, there are A LOT of great people on this site with a lot of experience and knowledge, so hopefully you'll be comfortable with your decision in the end.

Have a great evening, and good luck!

Nate

ConNie Romo  Thank you all for responding. I'm feeling down, sad and my heart sunk . All I needed from him is to engage me in a discussion with regards to my choice of valve. I feel pressured to decide with something I'm not at peace doing. It was apparent though during the conversation his preference is mechanical valve. I know he was just being realistic with my situation. He said because I'm still young (39), female and had children it's logical to go with mechanical valve and the need for future re-surgery is slim. And if I go with tissue valve that based on his experience it only lasts 5-10 yrs and will not be a good choice for me in the long term. Even though according to him in the end it will still be my choice. I feel discouraged somehow. I was hoping everything ironed out today and surgery date set.
Sigh!

Rita Savelis  I was very deflated when my surgeon wanted me to choose mechanical valves. Very deflated. Now, a year after surgery I realise why that decision was made and I am getting accustomed to it. I was not someone who took ANY meds before. I felt like the doctors did not understand how anti-meds I was. I felt just like you that doctors did not engage long enough in this conversation. Now, a year later, I realise they knew what they were doing. There is no perfect solution. Just what you need to do for your particular situation.
You will maybe have to cry many times over the unfairness of all this and I encourage it. I cried a lot.
I am truly sorry you have to go through with this.
I was extremely jealous of patients with tissue valves, but that was not the best option for me. I could have insisted on it, but I wanted to believe a surgeon who had operated on many patients, including ones with valves like mine (former cancer radiation therapy survivors). Life is really okay with mechanical valves.

Alan Lonsberry  I feel for you connie, I am dealing with the same issue. I have finally decided to go mechanical, on x valve. With this valve you can keep the inr at 1.5 to 2 safely, it is the only valve that is approved for this. I am 47 and don't want a reoperation, so this is my best choice. I also am a triathlete so I will be asking a lot of my valve, the studies I looked at showed this valve performs very well. Check the on x Web site out. Good luck.

Cathleen Weed  This brings back so many memories. The discussions are never long enough in the surgeons office. I wish they would staff valve specialists (who don't work FOR the valve companies lol) to discuss every pro and con based on the patients own unique lifestyle, age, gender etc..wouldn't that be great? Let me just say when it's all said and done and you are in the process of recovering, recovery will be your focus. You won't have the time or energy to be concerned over which valve is in there. You'll just adjust to your new circumstances. Tissue valves have been great for me but that was a personal choice (trust me they pushed the mechanical valve option for my 3rd one in 2005). It worked out for me because TAVR came along and my newest valve was implanted that way in August. It's a fairly new technique with it's own set of risks though. I went back and forth about that too. I was totally prepared to have another OHS if needed. The decisions never end. As a nurse I will say that if you choose a mechanical valve and take coumadin you don't have to give up your greens etc...you just have to be religious about sticking to a plan. So if you want two leafy green salads every day then you have to eat them every day, no skipping, because they will be stabilizing your numbers around that. It doesn't have to eliminate all your choices. You'll just adjust. I understand that concern because I eat an extremely healthy diet. I have a recipe and fitness book being published this month. Please don't worry too much. I know you're frustrated. Save your energy for your recovery and know that we've all been there. Nobody can see what the future holds and in the big picture this is just one small part of your life even though it feels enormous right now. I think the thing to focus on is that life goes on and there are many, many survivors on here who will show you that ❤. The healthier and more relaxed you are going into this, the healthier and more relaxed you'll be coming out of it. 💛

Steven A Husted  i love cathleens comments and posts something i might add that no one has mentioned is that mechanical valves fail to some sooner than tissue valves so it is really what you can live with the pros and the cons coumadin and a diet or living with the idea of a redo after so many years once you have been thru a ohs you may not mind a second surgery it was really not that bad and with medical advancements it may be better the second time around it is a very hard decision but one we can live with which ever one we choose i had a hard time deciding but i went with a bovine and now it is over with i am happy with my choice

  So sorry that you are feeling deflated. Go get a second opinion from another surgeon if it doesn't feel right. I have learned you have to advocate. The surgeons pushed for a mechanical valve since they last longer, but my dad died from a brain bleed from coumadin. I told them about web chats I did at Cleveland Clinic. When I asked if I could have a predisposition to having brain bleeds similar to my dad, they backed down. My surgeon implanted a larger tissue valve with plans for me to have a TAVR replacement next go around. Who knows what will be available then (they are already growing valves from DNA). I am not trying to put down mechanical valves; the dosages of coumadin have dropped since my father had his replacement and there are a lot of great people who have been happy with the mechanical valve and knowing that they would likely never have to have surgery again. Go talk to another doctor if you aren't happy. Also, Cleveland Clinic has wonderful web chats with surgeons. I asked Dr. Gillinov over a web chat his recommendations for me given my family history and he also suggested a tissue valve. They also have a second opinion service where they will review your records remotely and have a phone visit with you. They will also look up literature for you and send you research articles. It is wonderful. Best wishes and I hope you are at peace with your decision in the long run.

Cathleen Weed  ConNie..I know that might sound like a lot of work...but I totally agree with Laura above. It'll put your mind at ease.

Wanda Mroz  Go with your gut... You know I had a choice of full OHS or minimally invasive but something steered me to just go the proven OHS way... Since my repair was tricky it turned out to be the smart choice. My gut told me so. Get a second opinion too. That will help. You should be choosing what you feel is right. Blessings that you make the right choice for you... 💞

ConNie Romo  Since the appointment I have this nagging feeling to go have a second opinion. I'm somewhat bummed about the whole thing but I think it's the best thing to do. I'm calling my cardiologist tomorrow so he can refer me to Dr. Craig Miller at Stanford. He is actually my first choice but since the need to travel 4 hrs to San Francisco hence I decided to just go with the local hospital where it will be easier for me and my family.
I feel at ease thinking I will hear another surgeons perspective on my situation. I'm so grateful for all of you. As the saying goes, 2 heads are better than one😀

Steven A Husted  hi heart sister it is your choice and that was my decision i did not want to be on coumadin the rest of my life i chose a bovine valve and i am glad i did i am about 20 months out and doing fine in phase 3 of cardio rehab and enjoying it i was very encouraged by reading cathleen dewitt post she has had 4 ohs and chose bovine valve

ConNie Romo  Steven, yes i was inspired and encouraged reading Cathleen's story too. Seems like she is young like me. Every time I think about what valve to choose I always feel at peace with choosing the tissue valve and my husband feels the same way too.

Ashley Molyneaux  Connie, good luck tomorrow! I too will be having my aortic valve replaced and I'm hoping for a mitral valve repair. Sounds like you've got a good plan! I go back and forth all the time about whether or not to get a tissue valve. At the end of the day, you know what's best for you. :) Keep us posted!

Mary Wagner  Coumadin is not as bad as having repeated surgeries. My aortic valve is 26 years and I have done coumadin that long. No impact on my diet (now I do not eat kale) and once it settles it gets tested once a month. I did just have my 2nd surgery as I had an aneurysm- he thought he would need to replace the valve but when he got in there - he said it looked like it was brand new. I am 64 now - was much younger for the first surgery. This surgery has been much, much harder. My advice - get the mechanical and avoid repeated surgeries.
Read through these histories - there are several where the bovine did not last long. not trying to scare you but get all of your facts.

ConNie Romo  Hi Mary, thanks for sharing your experience and input.i appreciate it. One of the reasons I'm leaning more towards tissue valve coz of my diet. I'm a vegan ( going into more raw) and eating greens is a big part of my diet. Also, I have a 19 month old son. I still would like to be able to do outdoor fun stuff with him as he grows and I feel like getting a mechanical valve will limit me more than the tissue valve. It's daunting to make this big decision. I've been praying for God's guidance on what is the best decision for me.

Kate Watson  I think it's the hardest choice you can make in this process. I don't know how old you are but I was 29 when I had my first surgery and I had a young son. I got a bovine valve that lasted nearly 11 years. I really hoped to get closer to 15 years and was pretty devastated when it began to fail right at 10 years. Tissue valves don't last as long in young people you may know. Obviously if you get a tissue valve you are guaranteeing yourself at least another surgery or possibly more depending on how long it lasts and your age. I just had my second OHS and now have 2 mechanical valves at age 40. I really hope to never go through this again again so that was the choice I felt most comfortable with. Just a side note, I am a dietitian and you don't actually have to cut out greens but you do need to be consistent with high Vitamin K foods and communicate with your Coumadin clinic so they can adjust your dose accordingly. I can't say it's been easy to manage yet though as many things affect it. This really is a tough choice so I'd be sure to ask about all the potential risks and benefits of each type of valve with your surgeon. Best of luck!

Rita Savelis  You don't have to change your diet or cut out greens on anticoagulants. You just have to accomodate your dose of meds to your regular diet. You also do not have to stop doing outdoor fun stuff!
Tissue valves tend to last a shorter time in younger (under 60-70) patients.
Many patients in the US choose tissue valves because they are okay with multiple surgeries. OHS has become a common procedure with good results.
If you need several valves replaced, those multiple tissue valves wear out at varying times, some earlier, some later.
It's a really hard decision and there are pros and cons for both sides and there are patients who have positive stories for both, and patients who have negative stories for both.
I think we all had a hard time deciding what valves to go with (if we were in a position to choose). Because I have interior scarring due to radiation treatment for cancer and had several valves to replace, mechanical valves were strongly recommended. I was afraid of anticoagulants but now they are just a part of my life, really no problem.
If a woman plans to have more children, tissue valves are probably a better option, and then they can be replaced with mechanical valves later when she is past childbearing age.
Due to the culture in the USA where the medical system is litigous, difficult choices are often left to the patient.
It's hard, I feel for you.
Any choice you make is right for you and extremely personal and linked to your particular heart valve problem. Take care.

Sameer Khan  if your surgeon says so then you should do that because when you get used to coumadin then it will not be a problem, but with bovine you will have to do it again after 5 to 10 years max. but if you want children then you should go for bovine.