LETICIA DE LA ROSA-CREASEY posted a note for Jeniver that says:
Hi Jeniver! Hope all is well with you. Just writing to let you know that it is finally time for my surgery. My surgery date is November 2nd. I will be having the Aortic Valve replaced with a bovine valve. Right now surgeon does not see any problems with my ascending aorta, but did say if it looked weak he would replace it as well and that would change the valve to porcine with porcine aorta. Nervous but hopeful that all goes well and that recovery is swift. I was not showing any symptoms just went in for 3 month visit and tests showed valve getting very narrow. Again hope all is good and wishing you and your family the very best! Leticia
Leticia posted a note for Jeniver that says:
Hi Jeniver, so glad you updated your journal. It is good to hear you are stable and keeping active. Keep in touch and e-mail me anytime. I know the emotional roller coaster we ride some days. God is Big. I love your profile pic. Beautiful family. My email is email@example.com.
Leticia de la Rosa Creasey posted a note for Jeniver that says:
Just read your post on my journal. Not sure how to answer from my journal, so searched for your first name and found you. Thank you for writing in my journal. It means a great deal to me to talk with others that share the condition. It is Sept. now and I hope you update your journal or e-mail me to let me know how you are doing. Leticia
Suzanne Horton posted a note for Jeniver that says:
Hey, Jen, I am so sorry to hear this news; you are very strong and fearless and I know will pull through this and look back and laugh once more. Thinking of you and your family...sending you big hugs..
hI Jeniver, I like the name Anna. I named my valve Elsie. With my anuersym people acted like you might explode. I did feel like a walk time bomb. Now I tell everyone that I have been defuzed. Dont worry about everything it will all work out. Really waiting is the worse part.Good luck
Mooing all over
Linda H and Elsie AVR 9/19/12
Amazing blog page. You were always the most organized and efficient person I know :-)
If anyone can make this appear not scary.. it's you. Vallie and I love you and please let me know if you need anything.
<3 love, Allison and Vallentina
Thanks for the update. I've been thinking of you, Adam and the kids. AND I will keep trying to find a time to get together. Please let me know if/when you need any help with anything.
Hi Jeniver, So far that is good news. But what about the valve. I think that is what is going to do it. My anuersym is staying about the same at 4.5 also but my valve has gone down from 1.1 to .9
So now things have changed for me. Maybe that is what will happen with you as well. Good luck when you see the doctor, that will be the answer to look for.
You asked a great question - should you have a plan of action? ABSOLUTELY!!! Be involved in the process, educate yourself and ask question of your doctor/surgeon, and here. You'll be amazed at how much better you feel.
Hi Jeniver, Wishing you good luck on your test. I like the word heart purgatory. I think that is very well put. I feel like a china doll on a shelf and cant do anything cause of stress. I just had a nucular stress test last week. Dont want to do that one again. I was going to do the tread mill but at the last minute they changed their mind and had me lying down. I would have never made it walking. Had the shakes from the start, put it up to nerves but I dont think it was completely that as I was already nuked and didnt know it. Yes I just wanted out of my body but it didnt last to long. 3-4 minutes feels like 3-4 hours though. Good luck to you. Let us know how it turns out.
For the long haul
Hi Jen, I'm glad for you that at least you have a little more time to get prepared for the surgery you know will be coming but yuck to the waiting game, that's never fun but you do have a wonderful waiting partner in Linda H. (love ya Linda). Keep us updated on you and how you are doing, and I'm glad it sounds like you've found your guy for the procedure when the time comes.
Hi Jen, Welcome to the wait club. This is a special little area where we all wait until who know when. I am in the waiting game too. I just keep walking and walking as it does help. I like to listen to the sounds of the birds when I go out it is calming.
Good luck to you.
For the long haul
Hey Jen That sounds like a wonderful idea. You guys have lots of fun and say Hi to Mickey for me. Have a safe trip and get all of the answers and you will be fine and shine. Good luck to you.
For the long haul
Hey babes it's so amazing to read the stories of all those going through this with you & know you have this amazing support system. While we don't know exactly what you are feeling right now, we will be here for you; whatever you need! Remember you are strong & you will find your new normal will soon be better than ever!!Love you tons! Chappy & Scott XOXO
I have almost written the same same entry! I have stopped running for a few weeks now, and yesterday and today doing walking tours of three universities with my oldest son I couldn't even keep up. Just last week my mom said she knew this must be hard for me because the thing I turn to for mental clarity and stress relief has been taken away, and the thing I need most right now is mental clarity and stress relief! Just 4 more days on "this side" for me. I have found that simply going outside helps, even if I can't exercise. Maybe the same will be true for you.
I stopped doing heavy duty workouts too. It's not just that it's really difficult but scary too. What really stinks is the longer you go without pushing your body the harder it gets. At 53, if i don't work hard at staying in shape, it goes downhill very quickly. :)
I just hope I remain motivated after surgery. Intend to be lazy at heart ...maybe with a new and improved heart that will change!
Hang in there.
I know exactly what you are going through. I am also a distance runner. 39 year-old with 2 kids (10,11).
I was instructed to "slow down"
With running over a year before my surgery. I stopped playing soccer. When I did exercise, I actually felt "loss" for the old me.
You will feel amazing when it's done!!!!
I'm three weeks out today:
Walking, doing the glider. Running is right around the corner!!! I have so many races picked out for this summer.
What you are going through is temporary. It's so exciting to get my life back. You will too and it's all worth it!!! Good luck Stephanie Cole
Hi Jen. You have found the best place to find support and answers. My spouse, a distance runner, found himself in those same shoes two years ago, following with echos. We have been on/off the site since. We are now meeting potential surgeons for BAV repair/replacement, root replacement. Two on west coast, one at Mayo. All have been great, all said they wouldnt't reccomend Ross with root involvement. Repair options should really be consulted with "top" surgury centers. We are still on hold for next months. Thankful for ability to fix , but still times of absolute panic. Hope this helps
I am so shocked to hear about your condition. It's unbelievable that this should be happening to you especially since you have always been so active and could run for miles and miles with no problem. I will say an extra prayer for you.
Hopefully knowing that you have a wonderful family who loves you very much and also friends who love you very much, will give you some comfort.
Get well soon so we can have that glass of wine together. It's been way too long.
I am 38 and also have 3 kids. All boys. Hunter(6). Luke(3). Conor(20 mos).
I had my valve replaced on 2/20. I am doing fantastic. I started running this past week. It's slow but still a victory in my mind.
I went with a tissue valve. That was the hardest thing for me during this whole process. In the end I didn't want to change my lifestyle that much and deal with Coumadin. My valve should last 20 years and then it will need replaced again. My dr said by that time avr will be done almost exclusively via a catheter. No more open heart surgeon. I will need to see my cardiologist every year I assume. Have my first follow up with him next week.
I chose a local surgeon/ hospital so my family/friends could be close. I was lucky that I got one of the best surgeons in the area. He was actually from the Cleveland clinic.
I wasn't having any symptoms prior to my surgery and now I feel completely different. I feel 10 years younger. I really do.
I look at life differently. My surgeon before the surgery put it in a way that took my fear about the surgery and the future away. This is what he said to me. " you should see your kids(all of them) graduate high school , college. You should see them get jobs. You should see them get married. You see the have kids. What I am trying to tell you once we get you fixed and even if you need to have another replacement in 20 years.. I see no reason you won't live to be an old man."' when I heard that I was ready.
Feel free to email me and I will answer anything you want to know. I went back to work this week. My surgeon told me on my last follow up to live my life.
Good luck and you are off to a great start joining this family on this site.
Hi Jen Welcome to HVJ. This is such an amazing place to be. I have made so many friends. It really does help and makes you feel better that you are not by yourself. I have the same as you aortic stenosis/regrugatation and anuersym. About 5 years ago I was told I had a heart murmur. When we moved to SC I had a whold different story given to me. On my 65th birthday I was told it was aortic stenosis. Well that ruined the birthday thing. Mine at that time was moderate measuring 3.2. Since Feb it is now 3.7 and the anuersym measures up to 4.5. My doctor told me to walk not take the dog but walk 2 miles everyday and loose some weight. So I have and have lost 28 pounds so far. So now I wont see doctor until July with another echo cardiogram. From there if I dont like what he says I am going to get a second opinion and go from there. Like you it is no fun living this way. I never know what each day has in store. I will follow you and we will have to keep in touch. Feel free to read mine not much yet but hopfully it will get better. Good luck to you.
For the long haul
Welcome to HVJ! This is an amazing community of people who get it. We have all been in your shoes, been scared and overwhelmed, and have been helped by those that went before us. I am 2 months post op for the exact same thing as you. I had AVR with a bovine valve and my aorta repaired with a Dacron graft. I was in really good shape and all well went. I feel great. But do have urges to eat grass from time to time (just kidding).
Read other journals, you may want to read mine I am told it is helpful. Lean on this site by asking questions, you will be amazed at what you get back from this community.
AVR and Aorta repair 2/2/12
You and I have the exact same diagnosis. I'm 15 days post op today. Mine was not a surprise as I've known about it since I was 14.
I was symptomatic as I've had a long slow down hill ride with my stamina. My aorta measured 4.7 and I had severe regurgitation through my aortic valve.
I can tell you that now, at only 15 days out, I have about 90+% of my pre surgery stamina back and I plan to blow through that by the end of this week.
Please feel free to look through my journal, and as JH said, please ask any questions you have. Be involved in the process and educate yourself. This site will take away what truly is the worst part - the fear of the unknown. After that, the second worst part is the waiting.
In the shape it sounds like you're in, you'll do great. It truly is a managable process and when it's over, you'll think - wow, that's it?
Hey Jen~ I am so glad that you have found such a supportive community blog. Even though I will be far away, I will be very near in spirit and want to know everything that is going on. I love you and treasure you so much! Xoxoxo Much Love, your cousin Dj
Hi Jen and welcome to HVJ and you said it so right We are the Lucky Ones, are hearts can be fixed, how great is that. As you proceed in your journey ask questions along the way, everyone here has either been through it or going throughout. I am scheduled for May 7th to have my Aortic Valve Replaced, a bit nervous but more excited for how much better how I am going to be when this is over.
Your little ones are cute!!! I have 3 of my own but just a little older than yours 24, 21 and 18.
So good luck as your journey begins and look forward to your updates and helping any way I can.
Jen...we are a lot alike, although I have about 10 years on you. Had the exact same diagnosis about 4 years ago. Annual CT scans. My aneurysm finally grew too big and I had my surgery last October...replaced my aortic valve (porcine tissue) and repaired the aneurysm (Dacron graft). Had the full sternotomy.
I could not be doing any better now. You can read my journal if you want. Bottom line...you can do this and will do great. Feel free to ask anything you want.
Welcome to the HVJ community, where I found an amazing group of new friends who support and talk with each other. You'll have decisions to make. As you go forward on this journey that will make you better and restored, be sure to ask plenty of questions as you chart out your path. You need to learn as much as you can about the choices you have for type of surgery, the surgeon, and the hospital. Take care
- Jim Smith (valves repaired 3/13/2012)
Welcome Jen! I haven't been on here too long (my surgery is one week from today), but the site has been very helpful. It is so good to read the stories of other "healthy" people who are active and athletic...it has helped with the "why me?" questions. I'm sure you will back to doing everything you love in no time!