How to not live in fear?

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

ladylunte

Member
Joined
Jan 25, 2011
Messages
9
Location
Chicago area
In 1983 I was born with a CHD of pulmonary stenosis, meaning my pulmonary valve was defected and do not open like it should. This was found a few weeks after birth by my peditrician. At a few weeks old I under went angioplasty to try to open the value, it worked for a short time, but the the valve closed again. The angioplasty was done via OHS. At 4 months - Nov 1983 - I had another OHS to remove the valve - a valvetomy they called it. For 26 years I lived without a pukmonary valve and was not symptomatic at all. In Oct 2009, I went for a routine MRI and it was found that I had 60% regurgitation. The right ventricle was slightly enlarged but within boundaries. Because of the regurgitation, my cardiologist felt it was best to finally get a valve. On Nov 2009 I went in for my 3rd OHS and got a bovine valve. The surgery worked amazinging. Within 48 hours my heart was no longer enlarged and the valve was working perfectly. First time in my life I didn't have to worry about my heart condition. It was amazing.

Ten months later I found out I was pregnant. My husband and I were so excited. I had a very normal pregnancy, but the delivery of the baby in June 2011 was not so normal. Due to error made during my csection, I had severe postpartum hemorraghe and needed 14 blood transfustionsl. Due to all the blood products, IVs, antibiotics, etc, I left the hosptial with edema - severe fluid retention - which made me have high blood pressure for 2 weeks. After I was mostly recovered, I saw my cardiologist in Sept 2011 and he found that the pulmonary valve (the one replaced) had a mild/moderate leak and found the aortic now had a mild leak. This literally crushed me. I could not believe that I now had 2 valves leaking - one which I never had an issue with. He would not confirm, but most likely the edema caused the stress on the heart. I was to see him again in 6 months - March 2012. For those 6 months I was a mental mess. Fearful of everything I did. Working out scared me, lifting my child scared me, just living scared me. I was terrified I would injure my valves further.

Slowly March 2012 came and so did my appointment. This time the echo showed that the pulmonary valve was still leaking but very mildly - almost normal to someone without a condition. Even better the aortic was now showing from a mild leak to a trace. On 4-6 different views, the leak was only shown on one and not even enough to capture volume. I was elated. For the first time in 2.5 years I was told "see you in a year." For about 2 days it felt like the weight of the world was lifted off my shoulders. I started exercising again - something I had not done since before getting pregnant in 2010 - and that immidiately made me worry again. Even though i received good news, I felt like I could easily screw things up. I was under no restrictions, but I questioned every move. Here we are Sept 2012 and I am still so nervous and fearful of hurting my heart. Every fast heartbeat, mimic of a palpitation, every increased breathing rate, I become terrified.

So my questions....how do you not live in fear of causing damage? Also, when you go to your regular physician and they give you that weird look because they can hear the murmur of your artifical valve, how do you not question that something is wrong? I feel like all my other practicioners are so awkward around my heart and my valve, that their reactions make me fearful. I am in therapy and go 2 times a month and am on anxiety medications. But I do not think I will truly feel better until I can just cut the cord and remove the fear. Looking for any suggestions or tips.

Thanks for letting me ramble!
 
Welcome to a family of friends! Although we may not all have had the troubles you have had, most of us have stared death in the face at least once, and are still kicking. I have found this group of valve replacement people very helpful over the years. I feel that my valve surgery totally changed my life, and I still return to this site daily. Please stick around, post your concerns, know that your concerns will be understood, even if we don't have any magic answers. Welcome!
BTW, in my avatar I'm dancing with my daughter, born 1985, at her wedding a few years ago.
 
Hi, Sorry you are having such a tough time with the fear. My son is a few years younger than you (born in 88) was born with Complex CHDs and one of his CHDs was pulmonary stenosis/atresia he had his irst heart surgery at 10 days and 2nd at 18 months. and didnt have a pulm valve until he was 17 because they wanted to wait until he was as close to fullgrown as possible before giving him one, so since he needed his pulm conduit replaced then they gave him a bovine valve too.
I can't offer much advice, do you go to doctors that specialise in Adults with CHD? I also wanted to let you know there is a really great forum at the Adults with CHD Org's site http://www.achaheart.org/ I,m sure many of them have gone thru the same things you are going thru some time during their life.

FWIW I know it is hard to relax, but unless you have certain restrictions, you probably cant do anything too hurt your heart or valves, well beside things that noone should do like smoking drugs etc, wish doesn seem like things you do anyway.
Good luck with evrything and hopefully soon you can really enjoy being a Mommy and not worry about your heart so much, I know easier said than done
 
Last edited:
Thank you for your notes! I do see a very specialized doctor - he is actually chief of the congenital heart defect and reconstruction unit at a leading Chicago hospital. He is amazing and I trust him with my life. He tells me basically to keep calm and carry on. I love being a mom and hope to add to the clan again, once I feel
confident in myself.
 
My guess is that if you could hurt your heart during normal activity, you would have been given restrictions. I try very hard to always remember that worrying won't change the outcome, and the stress of worrying is not good for my heart. I know...easier said than done...right? Hang in there! Time will help...the longer you go without incident...the less you will focus on your heart. Did you ever do a cardiac rehab program? If you could get into something like that where they monitor your heart during exercise, you may feel better. It helped me.
 
Ladylunte,

Hello. I was born with tetralogy of fallot in 1965. One of the four components is pulmonary stenosis. 1)I had a shunt at six weeks to keep me alive until I got big enough to have the major surgery and be put on the heart lung machine. 2)At six I had a "repair" the included having my pulmonary valve removed. I lived 19 years without a pulmonary valve. 3)I had a cadavar valve put in at age 25. That valve lasted 19 years. 4)I had a bovine valve put in at age 44. The next time they hope they can replace the pulmonary valve in the cath lab.

I feel great for me. I have never had normal energy levels but I think I do pretty well. I work full-time as a nurse. (I am going part-time in a couple of months by choice.) I can't run, but I don't need to. I ride my stationary bike, cut my grass and do most of the yard work.

Regular physicians do not have clue about congenital heart disease. I do not pay them any attention when it comes to my heart.

Before my surgery a couple of years ago I had 40% pulmonary valve and 40% tricuspid valve regurgitation. My right ventricle was almost twice the size of my left ventricle. Before surgery I worried a good bit of the time. I knew surgery was coming
sooner then later and I worried that the docs would wait to long because it would be my 4th heart surgery. I felt tired all the time. It took everything I had to keep working full-time. The docs did not know how i did it. I certainly did not want to get even worse. Now I feel great.

I don't worry now because I trust my cardiologist and because I feel great. I encourage you to write down a list of concerns and ask your cardiologist about it. You are still readjusting to the newer test results and what the means for your life. Come up with things that bring you joy and take time to do those. Spend time living and enjoying life. What has helped me with exercise is to start slow and keep doing more. i pay attention to how I feel.

There are a lot of us out there that have pulmonary valve replacements. I know plenty that are in their 50s, 60s and 70s.

Debbie
 
Ladylunte,
Hi I had a kidney transplant 15 years ago, a aortic valve replacement 7 years ago, and now a total aortic root this last May. The only way to get through this life with all of this going on is to live life 1 day at a time and be thankful for every morning that you wake up and can step out of bed and get on with another day. If I had not learned to do this I would probably be crazier that I am now. LOL. Just take it one day at a time and enjoy life. That is all we can do.
Take care and God bless,
Keith
 
Last edited:
Time. It takes time to get past the fear.
My heart was so messed up before my first surgery that it took 2 surgeries to get it fixed.
If you want to exercise and feel safe, consider asking your cardio to refer you for cardio rehab. You'll be so much more comfortable starting your exercise program with skilled cardiac nurses watching over you the first 8 to 12 weeks.
I tell you, for the 4 years between surgery 1 and surgery 2, I felt like I was waiting for the other shoe to drop.
Now, I don't even think about my heart most of the time, except to remember to take my pills, and rev up the pacemaker before running an agility course!
 
I'm glad to see you got alot more great advice since my earlier post, I came back because I wanted to suggest since most of your fear seems to be about hurting your valve /heart by exercising or doing to much that you shoulddiscuss with your doctor Cardiac rehab, and swaw quite a few other members already suggested it. Even tho its been a whie since your surgery and pregnancy, I think it could reallyhelp you o exercise while being monitorred.
One thing I might also suggest, when talking to your docotr is trying to find rehab that is foccussed on Congenital heart defects, or Young adults, and not the typical Cardiac rehab that mainly focuses on ederly patients who had heart attacks or bpasses and a small percentage of middle age valve patients.

Is your Congenital Heart Defect Cardiologist also specialised in Adults with CHD? if not I would probably at least get a 2nd opinion form one, since they would hav much more experieence on CHD paople whove had pregnancies want to have more babies etc. Also an ACHD cardiologist should be able to set you up in a rhab program foccused on CHD and Adults with CHD, it might be affiliated with a hospital wih a CHD center,

Also if it helps at all with your fear, Like Debbie Justin's right ventricle, well whole right side was HUGE before his last 3 OHS, the last one his pressures on the right side of his heart were higher than the left side, since his pumonry conduit was almost completly blocked. BUT ater the diferent interventions, his heart was close to "normal" for him anyway. He was VERY active. during that time, they even let him finish a soccer season and schedualled surgey for the next week. then after the 2-3 month recovery he was cleaed to doing everything he did before surgery (baseball, baskettball snowboarding etc)

I know everyone is different even people with the same CHDs or surgeries, but hopefully it helps alittle to hear other who had a few pulmonary valve surgeries and are very active.
 
You all are amazing. Thank you for the kind words and suggestions. I asked for cardiac rehab after my surgery but my cardiologist thought I would feel out of place. Perhaps I will ask again. As for my doctor - he specializes with adults with CHD. He is amazing - one of a kind - and my hero. I forced myself to get outside jogging. I did 1 mile and felt fine. Hr was great and breathing was steady. Only thing that killed were my legs. I just need to boost my self confidence.
 
I feel you and can relate 100%
My first OHS was an emergency, and honestly totally "freak." They found I had Aortic Insufficiency (leaky valve) when I was 3yo, from rheumatic fever. Well we monitored it my whole life, and I caught endocarditis and it literally destroyed the Aortic valve, and did a number on my Mitral. They had to replace both at 19yo.

WHENEVER I catch a cold, feel just a bit off in ANYWAY, I automatically panic in fear of a repeat of the nightmare.

Well January this year, my 9 years and 1 month post op I heard the bad news. "There has been a change"
I bawled my eyes out and felt TERRIFIED..that is it...it's happening again.

Well I go in next Tuesday to replace the valves again :) How do I try to cope with the fear and anxiety?...I remind myself that one of the worst case scenerios already happened and I triumphed, and with positive thinking and prayer I can/will do it again.
I think you can and will too. It is 100% normal to feel scared/fear/ etc... Look at what you have already lived through, but just remember YOU TRIUMPHED and will be able to do it again, if needed.

I can't wait to start my next 10 years with new valves and have a baby like you!!!
 
i don't know *how* works for you but it is the only way to life. Fear will not alter the outcome.

I have never been afraid or anxious about things, perhaps it is because I accept every day as a gift. I try not to be greedy and demand my host gives me more. So I really don't care if I live another day or not.

To me the trick also involves putting into practice what I want to do and not putting it off. I tell those I love how I feel and am comfortable with my self and my (increasing) limitations.

Religious people (rather than those of us who simply believe in God) seem to put their time into prayers to change what God wills. I just accept it as I can and move along as I can doing what I feel takes me to a better place in my heart.

I wish you peace
 
Pellicle,
I think you are a wise person. Thanks for your comment. I have fear sometimes but for the last few days I have been at peace about my AVR on May 23rd. You certainly give "fears" a run for their money! lol. It is posts like yours that make it all easier to accept and get through. Just sayin'. :) Kim
 
I understand your fear. I get myself into huge knots from time to time, even though things are going well. Try and focus on what's going well, and have confidence that your doctors would warn you if you were at risk from everyday activities. (Having said that, I also think it's really important to undertand everything that is happening to your body so you can question doctors and understand their answers.)
Some readers might disagree with this, but I find being on a mild anti-anxiety is FANTASTIC! I've been on one for just over two years. I went on it as I was nearing surgery. It just 'takes the edge off' things ... I still get worried, I still get teary BUT I don't focus, focus, focus on something like I used to. Exercise is great, as is keeping busy. But most importantly, feel grateful for everything you have and the people in your life, especially your little baby. Look at your baby every day and think WOW, look what I made! Be grateful he/she is well and happy (well, maybe not all the time). Be grateful you live in a country where they have doctors to fix our problems.
And have a drink :)
 
Back
Top