I'm so overwhelmed!

[Naomi]

Hi I'm so glad I found this forum. I've spent the last few days reading and getting information I could never have gotten anywhere else! Thank you!

I found out about 6 years ago that I have a bicuspid aortic valve but didn't think much of it since my grandma had the same thing and didn't need it replaced until she was 69. I had my annual echos for a few years then got busy being a mom and kind of just didn't think it was necessary (boy was I wrong!). Anyway I asked for an echo a few weeks ago because I hadn't had one in a while and was feeling guilty (and exahausted) and found out that my valve has moderate to severe leakage. (I didn't quite believe it for a few days! DENY! DENY! DENY!) I was referred to a cardiologist (my first time!) and he is going to do a TEE on 4-27. So I guess I'm interested to know what my chances are that the TEE will say the leakage is really not as bad as the Echo said it was. I know the TEE is supposed to be more accurate and will tell me exactally how bad the leak is but could the first Echo have made it look worse?

I'm a 25 year old Mom of 2 boys (3 1/2 & 5 months) and I am so nervous. I really want this to all go away! I'm sure you've all been there. It's all I can think about and I'm trying really hard not to be freaked out but I am! Any thoughts you can share would be nice! Thanks!

 

[geebee]

Welcome Naomi. As you have already discovered, you have come to the right place for answers and support.
I am sure you realize no amount of denial will make this go away. However, it is so easily fixed these days. Granted you are talking major surgery but the surgery has been so refined that it is getting easier and easier to get through and on with your life.
The TEE is considered more accurate than an echo but it is difficult to say whether you will get the news you want. You can expect to get news that will allow you to pursue the right course. If you are having symptoms, you must already realize that surgery will be in your future.
Try to stay calm and wait until you find out what the TEE indicates. We will help you get through whatever you need to make things better.
Take care.

 

[Naomi]

Thanks Gina! I'm starting to believe that surgery is in my future, I keep having to push back the wave of denial that keeps hitting me though! I keep telling myself that I'll feel so much better when this problem gets fixed! It's just in the meantime it's hard to think of myself as a heart patient! I just want my TEE to be over with so I know what the next step is!

 

[twinmaker]

Welcome Naomi! We're glad you found us and this site. I know it's hard, but try to stay calm and take each step one at a time. There are many knowledgeable people on this site, and we have all been where you are right now, so we can truly say, "We understand". I know this is all frightening, and denial is certainly normal. After you have your TEE, you should have some more answers, and you can go from there. I had my first OHS at age 22 and again at age 29. I had three small children (a 5 year old daughter and three year old twin boys) when I had my second surgery, so I know it's scary having to deal with something like this with young ones. But believe me when I tell you that if you need surgery, things will work out, and you'll feel so much better afterwards. You need all the energy you can get to raise small children. The people on this site are wonderful, caring, and supportive, and we will be here for you. LINDA

 

[Karlynn]

Welcome! My kids were young when I had my surgery (5 & 7). They are now 20 and 22 and life has been incredibly good. I'm glad you found us, it's such an incredible relief and comfort to know people who have been there, and done that.

 

[Naomi]

Those of you with kids who were young at the time of your OHS...How did your kids react? How did they get through your recovery? How long will I need help at home? I'm really worried that this will scar my kids for life! It's pretty hard to explain to a 3 1/2 year old what's going on!! I can't tell you how relieved I am to not be the only person to have this happen in their life! Thank you thank you thank you!!!!

 

[WesternNYer]

hi Naomi...

hi Naomi...

I had a bicuspid aortic valve( confirmed by a 3D real time Echo) and likely a case of undiagnosed Rheumatic Fever that put the lucky 1% valve over the edge...and though he didnt live with me...I have a parental relationship with my wife's little boy of 6 ( 5 when my surgery took place 5 months ago) The 3D showed a great EF,,,but a significant backflow.This was done after the TEE showed a low normal EF and moderately severe regurg. Even at 5...he understood everything as I explained it...and he was super helpful as my watchdog in making sure I did my " Feet up" after meals. I think as long as you explain stuff( and as long as they're not too young ) kids understand alot...even the need for mom to recuperate....but you will need help for the first few weeks...and mustn't lift them....or over exert yourself too early on. Give your body time to heal...and you will thank yourself when all is said and done. Rely on the insight everyone here can offer....It helped me immensely.I know it did for me.... Tim

 

[WesternNYer]

OH...another thing....

OH...another thing....

The whole " heart patient" thing hit me pretty hard too....I'm a relatively young ( 43 ) and active guy.....and it kinda weighed on me before my surgery. That said....now I've moved so far beyond that stage....and all the doubts about where my future lied have dissipated, and I'm back on track...with the same outlook I had before I became a " Heart Patient". I can say I'm better for having endured what we all here have to at some point, but that would be patting myself on the back for getting through this. And truth be told....it was everyone else from the Nurses....my surgeon...my family and friends ( and even the little guy) ...and everyone HERE who helped guide me through the process that deserve the praise.So stress less if you can knowing they are all here to help.....Tim

 

[Marguerite53]

Your boys are precious!! I do so miss those days. But oh, I cannot imagine being tired for them! Your boys need you to be at full speed!!

I will email Heidi to get in on this. She is a year and some months out and has 2 beautiful little girls and I think she may be able to help you with some of your anxieites......which, by the way, are completley normal.

Just try to go with the flow and don't think ahead too much just yet. Let the doctors get you some definitive answers and a plan in mind. If you get copies of your reports, some of us here can help you decipher them. At the very least, we can help you come up with great questions for your doctors so you can better understand your current condition.

Hang in there. I have 3 grown, 23, 21 and 18. They say (whoever "they" are) that one is like none and 2 is like ten!! You have your hands full. Try to enjoy your time as you normally would and everything will unfold for you.

Best wishes!

Marguerite

 

[Janea]

I can relate to you!

I can relate to you!

Hi Naomi,
I am a mother with young children just like you. I just had OHS 4 weeks ago to replace a severely leaking mitral valve. When I first learned my valve was leaking I had a "moderate" leak. One year later it was a severe leak and they told me I couldn't have any more kids (my heart couldn't pump blood to the baby and my organs). The doctor also said they would wait till I was symptomatic before the did the invasive tests (heart cath and TEE). Well, I pressed for the tests. So glad I did. The tests revealed a much bigger problem and they scheduled my surgery immediatly. After surgery, my surgeon said if I had waited till I was symptomatic too much damage would have been done and my heart would not have been able to handle a new valve. In my current state he said I wouldn't live ten years. So, if you are symptomatic you may want to do some research (there are publications out there that stress early intervention) and have surgery sooner than later. It is soo scary.
My kids are ages 1 1/2, 4 and 5. The whole process of learning about my condition, finding a surgeon, picking a valve was very stressful. They saw me crying alot. I was very open with them and we discussed what was about to happen. My oldest really took it hard and for two weeks was extremely clingy and would cry "I don't want you to have an operation" I told her she could cry as much as she wanted and to come talk to me when she felt scared. This seem to help and she was able to move through that stage and feel more at peace. The night before surgery I printed of some clip art of angels and my girls colored them with delight. Then we hung them up all over my bedroom along with some inspirational thoughts various friends had sent me. I told them the angels would help me remember I was not alone and being looked after always. This was a good experience for our whole family and helped the girls process what was going on.
I have scheduled someone to be with me during the day while my husband is at work for 6 weeks (2 weeks to go). At first I did this because I knew I wouldn't be able to lift my son for 6 weeks and he is always climbing on tables and furniture....a real hazzard. YOu won't be able to vacuume or push a heavy grocery cart (my carts always feel like 100 pounds when I get all the food and the kids in there) etc... Aside from that, I was happy to have the help just because I was/am sooooooooo tired! Getting off the couch to eat, go to the bathroom and do my walks was all I could handle. SO happy to have someone here to tend the kids. Anyway thats my 2 bits. Please email me or send a presonal message if you want to talk more. It is really nice to have someone in the same stage of life as you undergo this major life change. Let us know what the echo shows. I will keep my fingers crossed for you!
--Janea

 

[Heidi511]

I was you (a teensy bit older but in a similar situation)

I was you (a teensy bit older but in a similar situation)

Hi Naomi-

If you read my story (Heidi Kerwin) in the second column of stories under Aortic Valve Replacement/Repair (continued), you'll see that I had a similar situation to yours. I will say you are lucky in the sense that you've had some warning with the diagnosis 6 years ago and that you found this website PRIOR to surgery. My story started on February 6, 2004, and "ended" on March 6, 2004, when I came home from the hospital. One month from diagnosis to done. That left me just enough time to freak out, write Wills and Health Care Proxys, research the surgery, consult with surgeons, write letters and tape record my voice for my girls, plan for their care after my surgery, and make and freeze a bunch of meals. I didn't find out about this site until a few months after my surgery. I now know it would have alleviated some of my anxiety/insanity to know that there were other people like me who had already been through it and could virtually hold my hand.

How did kids handle it? I was 37, by my kids were similar ages to yours. My oldest daughter was not yet 3 years old and my youngest was 8 months old. My oldest had the toughest time, the younger one was oblivious. I tried not to have all out emotional melt downs in front of her - but the few I did have, she consoled me. I told her that I was scared and that it was okay, because everyone gets scared sometimes.

One of my biggest fears was not being able to care for my kids after surgery. I'm a stay-at-home mom and was warned not to lift anything over 10 lbs. for 3 months. My 8-month-old was well over that! How was I going to manage? Babies don't carry themselves upstairs and jump in and out of their cribs!? (One idiot in the medical field actually suggested I put the baby in a blanket and slide her down the stairs. What?) They can't get themselves in & out of carseats! I looked into a nanny service - no way, too expensive. It was decided that my mom would take three weeks vacation to come over every day and help with the kids, my cousin would come the next two weeks, then my mother-in-law would come for three weeks after that. In a pinch, my sister-in-law was on stand-by for the following two weeks after that if needed. And that would take me just about to the three month mark.

Well, let me tell you. All the warnings and post-op instructions are geared for 65+ year old people. I actually felt pretty good after I got out of the hospital. The day I came home, I took a short, slow walk. Within a week, I was walking a mile. I didn't do a lot of lifting, but I discovered a way to get my 8-month-old onto my lap. She would stand at the front of the chair, I put my foot between her legs, held her hands and used my leg to lift her onto my lap. That lasted about two weeks and I could lift her with no pain or strain whatsoever. Needlesstosay, after the three weeks of my moms help, I really didn't need help at all (but I accepted it! and that was hard to do). My cousin helped out for the two weeks she agreed to. By the time my mother-in-law got there, I as pretty much back to normal, but to make her feel needed, I got a lot of errands run while she was around. I went to cardiac rehab, got my hair done, etc. All the things you don't have time for at this point in your life.

The stigma of being a heart patient? Not really any stigma. I have something to talk about at parties . It keeps me aware of how fragile life can be. It makes me cherish my children all the more. It's opened a door to a bunch of wonderful people on this site, some of whom I'll meet at the Reunion in October.

If I had to do it again, I certainly would be concerned, but not as petrified as I was without anyone to talk to about it. Feel free to drop me a line at [email protected] if you need to discuss anything. Upon request, I've sent pictures of myself postoperatively, pix of my scar, discussed "women's" issues and coumadin, etc. Anything - I'm open.

PS: One note. If you have local support, take it. People want to help and the best advice I received was "let them." If someone says, "What can I do to help?" Have them be the meal organizer - have people who offer to make meals go through one person so that you don't have to coordinate that yourself. We had 6 weeks of meals brought to our house through my church, my playgroup, Mothers & More (check out the chapter near you!), and my neighborhood. I had a coordinator for each group and they all conferred with one another to come up with an awesome schedule. The meals were the MOST helpful thing of all! Believe me.

Contact me if you need to. My best to you and your family.

 

[TomS]

Don't jump to conclusions. Wait and see what the TEE says. I lived with a leaking and sticking bi-cuspid Aortic valve until age 48 before it needed to be replaced. Things to watch for include severe stenosis, or narrowing of the valve. This is more significant than leakage. Changes in the dimensions of the heart, its overall functionality and symptoms are key things to watch for. In the mean take it easy.
Good luck,
Tom

 

[Naomi]

Thanks everyone!

Thanks everyone!

It's good to hear that I can get through it if I have to! And that my kids are going to be okay too! I will be PMing or e-mailing some of you but I think I'll wait until after my TEE so I have more specifics to ask about. Right now I'm still hoping the TEE will show that I can live with this for a little while, but I am symptomatic so realisticly it probably won't. And I know if I get it fixed I'll eventually feel better. I was dragged out of bed this morning by a phone call from the cardiologist's office wondering if I could come in this morning instead of tomorrow for my TEE. It would have been nice but too short of notice to get my kids watched and my husband there!

 

[twinmaker]

Hey Naomi. Just wanted to get back on and answer a few of your questions concerning your children and the help you will need after surgery. We lived in a town where we had no family close by but had many friends at our church and neighborhood. My mom flew out to our home a week before my surgery to learn the kids' routines and get everyone settled into "MeMa" being there and taking care of them. We pretty much kept life as "normal" as possible right up to the day I went into the hospital. In fact, we went to celebrate my birthday (two days before surgery) to the kids' favorite restaurant (Chuck E. Cheese). We answered their questions truthfully in terms they could understand and in non-frightening terms. We stayed very positive. If I had crying spells or meltdowns, I didn't let them see that. Back then (1981) heart surgery patients spent at least 10 days in the hospital (it's much less now) and so my husband and mom would bring the kids to the hospital to see me. This was after all the tubes were out. The first time they came to visit, my husband brought me down to the hospital cafeteria to see them and my mom and have a meal together. After that, they would come to my room. It was a private room, so that was good for visits with them. My mom stayed for two weeks after I got home. With the 10-14 days in the hospital after surgery and two weeks after getting home, that made me almost a month post-op. Thankfully, my husband worked out of our house and that helped immensely. Believe me, this will work out for you also. Just don't be afraid to accept any and all help. Our neighbors and friends brought in food and offered to have the kids come play at their homes for short periods of time. That's when I would nap. And when the kids would nap at home, I would also. Sort of like having a newborn in the house! Thank goodness my kids were good nappers (even my 5 year old)! By the way, my kids are 30, 27, and 27 now! Hope this helps a little. We're here for you. LINDA

 

[Naomi]

I get to wait 3 more months!

I get to wait 3 more months!

Thanks to everyone who has had something to share!! I had my TEE today and from what I can remember and what my husband is telling me, I am okay for 3 more months! At that point I'll have another "regular" echo and visit the cardiologist. Sounds great to me! It would be great if I can go years without having to fix it and I'm very glad to wait another 3 months! And if I NEVER have to have another TEE I would be the happiest person alive! My EF was 60%. That's all my husband knew. I think I'll leave it at that and write on another day when I'm feeling a bit more like myself. Thanks again. I am so grateful!

 

[Naomi]

Oops!

Oops!

I called to make my appointment for July (I couldn't because the schedule wasn't out yet )and asked about getting the regular echo before the appointment. A nurse called me back and said I didn't need to have an echo before the next appointment. I also called the hospital to try to get the echo and TEE reports sent to me. So when I get those I'll see if anyone has insight!

How long is this sore throat from the TEE going to last? I'm not usually such a wimp! It is sore to even touch my neck right in front! It is better than yesterday but I really didn't expect this much hassle from it! It doesn't help that my son keeps "hugging" me around the neck!

 

[Praline]

When I had my TEE,

When I had my TEE,

my throat was very sore the next day, then the day after it was pretty much fine. I hope you feel better tomorrow.

 

[Janea]

Yeah, the TEE was my least favorite test. I even thought the heart cath was better than the TEE. I will never forget the doctor lubing up the end of what appeared to be a small hose, sticking it into my mouth and telling me to swallow it. "How is this anatomically possible?!" I thought. YUCK! I have had two TEE and it's strange but I never really had much of a sore throat. Hope yours feels better soon! So happy to hear you have a few months before you have to worry about future surgery. That is great news. Your kids are so cute!
My son kicked me in the sternum today while I was getting him dressed. It was an accident but WOW, such pain. It is hard to recover with little rascals about, but the little rascals are worth it!