Having second OHS AVR and new to group

[AOS518]

Hi everyone I'm new to the group and am having my 2nd AVR on jan 17. I have a few questions for those with mechanical valves. I'm leaning towards that as I'm 27 and don't want to have to go through more surgeries. I'm really nervous about having to take coumidin and life after surgery. I have a 19 month old daughter and am worried about how she's going to handle not being picked up or snuggling. After my 1st surgery I became a very different person as my perspective changed from having a life changing surgery at 22. I'm curious has anyone else experienced a change in themselves and how do you cope. Also I'm very worried about the clicking of the valve and was wondering if anyone has some good coping strategies. Also how long have your mechanical valves lasted. I have no other health issues expect that failing aortic valve. Surgeon says no more surgeries but cardio says ill have to have valve replaced again at some point.

Sara

 

[Heart Of The Sunrise]

Sara: If you go with a tissue valve you will need replacements in your lifetime. Although the second could most likely be (TAVR) transcather..no OHS. I recently found out that I have a biscuspid AV and it's related issues. My initial consult with surgeon is on 2/19. My cardio hopes to push this up. My research leans me toward a mechanical valve. I favor the ON-X with the aortic graft attached. ON-X is the midst of a study for reduced
coumadin usage. I can not imagine another OHS at age 70 or above. Where are you having the surgery done? I know that my designated surgeon implants the ON-X valve. He is at U of P... one of the best. I started a string in the Valve Selection forum on the ON-X Valve. The reports on it's noise level are that it is quiet...one recepient described it as a subtle chime. There are many design aspects of the On-X valve I believe say it is my valve of choice. There are many forum members who have discussed their dealing with coumadin...it is quite managable. A mechanical valve should last a lifetime.
Best of luck on 1/17. Heart of the Sunrise.

 

[AOS518]

Heart of the Sunrise,
thanks for the information. I am having surgery at Morristown Medical Center (fomerly Morristown Memorial Hospital) in Morristown, NJ. The same surgeon that did my first valve replacement is doing this one as well. I have also consulted with a surgeon at Weill Cornell/Columbia Presbytarian. They both agree that a mechanical valve gives me a lifetime without another procedure. My tissue valve only lasted 5 1/2 years so they feel that another tissue valve wouldn't last longer then that. I inquired about the ON-X and my surgeon doing the valve does not use them and feels that because my valve size is so small 21mm he can give me a bigger valve size and better function with a st. judes mechanical. i am also not able to have the transcather as its for patients that are considered inoperable and has not been FDA approved for replacing valves that have already been replaced. My surgeon also explained that the studies being done on the ON-X valve will take many years before they are approved and he feels that to choose a valve because i might someday get off coumidin is not the right decision as the ON-X valve would not give me the greatest opening available as with other mechanical valves.
I hope you get your consult moved up and that everything works out well for you. thanks for your insight, i really appreciate it.

Sara

 

[Duffey]

Sara, do you know why your cardio believes you will have future surgeries? Did you have a tissue valve implanted the first time so you could undergo pregnancy without the fear of anticoagulation complications? At your young age, a mechanical valve does seem like the best option. It should last many, many years, which is why I would ask your cardiologist why he feels you'll need a future replacement.
Best wishes,
Mary

 

[dick0236]

Hi Sara and welcome. My mechanical valve is over 45 years old and continues to function normally. Usually, mechanical valves are explanted due to reasons other than "wearing out". I find Warfarin(Coumadin) a doable nuisance that has had very little impact on my life. OHS, in my opinion, has a dramatic impact on how we handle life. Fortunately, "post surgery counseling" and support groups, like VR.org, help us cope.....it helps to know we are not alone, and that most of us go on to live out "normal" lives.

Congrats on your 19 month old daughter. I had two sons, 6 and 8 years, when I had the surgery.....and I now have four grandchildren AND three GREAT GRANDCHILDREN.....so you have a lot to look forward to.

 

[Greg a]

Hi everyone I'm new to the group and am having my 2nd AVR on jan 17. I have a few questions for those with mechanical valves. I'm leaning towards that as I'm 27 and don't want to have to go through more surgeries. I'm really nervous about having to take coumidin and life after surgery. I have a 19 month old daughter and am worried about how she's going to handle not being picked up or snuggling. After my 1st surgery I became a very different person as my perspective changed from having a life changing surgery at 22. I'm curious has anyone else experienced a change in themselves and how do you cope. Also I'm very worried about the clicking of the valve and was wondering if anyone has some good coping strategies. Also how long have your mechanical valves lasted. I have no other health issues expect that failing aortic valve. Surgeon says no more surgeries but cardio says ill have to have valve replaced again at some point.

Sara

Sara WELCOME WELCOME WELCOME I have added your date to the family calendar and will drop a PM to Malibu82 a member that has a GREAT attirude and two cute young ladies that were very young when she had her surgery

 

[AOS518]

Greg,
thanks for the welcome. its nice to have found a group where people "get" what im going through.

 

[AOS518]

Dick0236,
thanks for the response and its great to see that you have had your valve for many years and that makes it aliitle easier for me to get a mechanical valve. and you are correct i do have alot to look forward too, sometimes i just need someone to put it into perspective for me. I already have my post surgery counseling set up and my therapist is great and helping me cope already. thanks for letting me know im not alone.

Sara

 

[AOS518]

Mary,
she says its because in her practice which is affiliated with the hospital she has not seen a patient whose valve is older then 25 years. most of her patients are "older" with other health issues. She's also very blunt and i think she doesnt want to give false hope that i have surgery and will never need it again. I did chose a tissue valve 1st time so i could get pregnant safely. the pregnancy was a very rough one and put alot of stress on the valve, which is what the surgeon believes pushed it over to needing to be replaced. This surgery is a surprise as when i had an echo and stress test in april 2012 everything looked great, then i started having some shortness of breath in october and a repeat echo in november showed that the pressure gradient was very high and there was some pulmonary pressure, so to the cardiac surgeon i went. he repeated the echo in office that day and agreed that the valve is failing and most likely from the pregnancy. As i was told i would get 10 years out of the tissue needing to go be in at 5 1/2 is a surprise. the surgeon also explained that the valve will last a lifetime but that sometimes the tissue grows into the valve which causes it to stop functioning properly and requires another replacement. He feels confident that this won't be the case with me and that in his years of pracitce has only seen this a handful of times. I'm hoping that my valve lasts a lifetime and there is no need for another procedure.

Sara

 

[JimL]

I've had my St. Jude mechanical for 11 years, and all is smooth. I recently got to freak out a new nurse with the "ticking" which I hardly ever hear; I found it great fun. You say, "I have a 19 month old daughter and am worried about how she's going to handle not being picked up or snuggling." Am I missing something? I hope you don't stop picking up and snuggling because of coumadin. I just had a visit from my 14 month old granddaughter, and we did lots of picking up, carrying, snuggling, whatever, to say nothing of the wrestling with my six-year-old grandson. Coumadin is no problem. I regularly do woodworking with the sharpest tools I can find with no trouble at all.

 

[AOS518]

Jim,
i'm worried about the 6-8 weeks recovery where i was told i can't pick her up and snuggle because of the healing breastbone. I'm glad to hear that you are doing well with your mechanical valve, and that the coumidin doesn't stop you from living your life.
Sara

 

[ElectLive]

i'm worried about the 6-8 weeks recovery where i was told i can't pick her up and snuggle because of the healing breastbone.

You know, from a Dad's perspective, I think young kids are able to adjust and handle the whole situation much better than we adults do. What is a heart valve and tubes and medicines and pain to us is really just an "Owie" and a bunch of other stuff that doesn't have any real meaning to kids. Yes, I know it's not easy being told not to pick up a 19 month old, but for the most part it is pretty easily handled. We switched my daughter over as much as possible ahead of time...things like diaper changes on the floor instead of a changing table, climbing up into a high chair/booster seat on her own, etc. She of course preferred the changes! The crib was the biggest challenge for us, selling the big kid bed was surprisingly hard, the one area she didn't want to grow up about. But of course a lot of kids are out of the crib much earlier too, so maybe that's not even a issue for you. Anyway, as for snuggle time, no big problem to me there either, just leave some space next to you (couch, bed, or whatever) and just give a little instruction on where is still ok to give big hugs, and where the gentle hugs need to be. I tell you what, though, the day the picking up and big chest hugs return (5 1/2 weeks for me) will still be a day to remember! :thumbup:

Now, my daughter was approaching 2 1/2 so it does make some difference, but in all honesty, she was the best part of the whole experience for me. No fear, no frustration, not really any problems at all...just a constant cheerleader and morale booster throughout. She got a real kick out of being put in charge of my recovery...helping me do things, leading my walks, etc. Sure, 19 months, is a big difference in understanding and capabilities, but I'd bet your daughter will do equally well in helping you through this. There's no perfect age or time, really, but everything still works out in the end. My wife was also in her third trimester (with her own lifting restrictions) with daughter #2 so speaking from experience here!

Best wishes to you!

 

[ski girl]

Sara I'm on my second valve, first was tissue that had to be replaced due to acute endocarditis. The second valve is mechanical which was everything I didn't want, with the coumadin and the ticking.

The coumadin has been much less of a problem than I expected. You're not fragile - I'm a competitive ocean paddler and an awful mountain biker and I still do those things without any worry. I fall off my bike at least once every ride and get cut or bruised. Sure I take longer to stop bleeding (and have some amazing bruises!) but I've yet to get into danger. So don't worry about coumadin restricting your life! Unless you juggle with sharp knives for fun . . .

The ticking, however, was another beast entirely. I didn't hear my valve until day 8 and the thing hasn't shut up since. I'm almost 16 months post-op (St Judes valve) and it's still annoying me. For the first six months it kept me awake, and then woke me up. My coping strategy was two glasses of wine, a massive fluffy pillow that muffled the noise, and a little fan making white noise beside my bed. My surgeon says my valve is loud because I'm slim and because my heart is really strong (I think he's just being nice!). It bothers me a lot less now even though I can hear it all the time still!

Good luck with your surgery and fingers crossed it's your last!!

 

[DMS]

Hi Sara,

Happy New Year. I have had the St. Jude valve implanted and although it is slightly audible, it has no impact at all on my psyche or ability to sleep. Almost comforting to hear it ticking along. Very little noise really and only when there is nothing else to hear. The warfarin therapy is not a problem for me either. I eat what I want but try to be consistent. The anti-coagulation section of the forum is very valuable for good information. I see no issue for you as long as you educate yourself with accurate facts and I was able to pretty much forget about it as long as I make sure to take the meds as prescribed. In home testing is also endorsed by most doctors as it will help you to maintain stability. Make sure you get answers to all your questions.

I offer my best wishes for a speedy recovery so you can get back to snuggling with your daughter. I am older than you, but was cleared for exercise and weights at 7 weeks so hopefully, you can make it that quick too.

 

[Gail in Ca]

I had my first AVR at age 34. My daughter was 2. She really missed me that week in the hospital, but now, we tend to be sent home in around 5 days. I had no problem with her after surgery. She wanted to see my scar, and then she understood Mommy couldn't pick her up for a few weeks. I would get down on her level and hug her, or she would snuggle while sitting on the sofa. I got a mechanical valve 11 yrs after that, and the coumadin has never been an issue. I got my own machine to test my blood very early on. The ticking did bother me for a long time, but I did eventually get used to it. I was quite thin when I got my 1st mechanical valve. It used to bother me only at night or when performing in orchestra, during quiet passages. But, nobody else heard it, only me. My husband hears it at night, but it doesn't ever keep him awake!! My cardiologist can hear my latest mechanical valve across the room, but he's the only one. My 1st mechanical lasted only 8.5 yrs because I contracted bacterial endocarditis and it caused problems for my aortic and leaky mitral valve as well. It's rare to get it. My mechanical was supposed to last my lifetime.
Hopefully, my new one will, as the surgeon implanted it into a graft that had to replace a part of my aorta that was grafted the first surgery. So, no exposed threads! All the best to you. It will go well, I'm sure.

 

[Superman]

Welcome to the board! I had my first AVR at 17 and went mechanical at that time. I did end up needing another at 36, however the first mechanical valve was fine. I had an aortic aneurysm that required replacement with a graft. They put in a fresh valve while they were at it. Like a previous poster mentioned, subsequent OHS's on a mechanical valve typically aren't due to failure of the valve. All told, over 22 years clicking and ticking on coumadin with no complications to speak of.

Aneurysm's, panus growth (scar tissue blocking the valve), issues with stitching leading to leaks around the valve, infection - those are some of the most frequent complications leading to future OHS with mechanical valve's. I have no idea how often this stuff comes up though, certainly don't mean to frighten you. I agree with your cardio that you might be setting yourself up for disappointment if you're banking on one and done with mechanical. I know I was much more down about my second unexpected OHS that I was my first that I lived my whole life in anticipation of.

I concur with your view not to base a decision today on what might happen in the future. Personally, I'm not a fan of surgeons recommending tissue because future replacements might be able to be done trans-cath. They also might never get cleared for this.

As far as kids, I had four when I had my last surgery ages 8, 5, 3, and five months. They all did great with the older ones helping out. We brought a special chair into the living room and they knew it was dad's recovery chair. With the help of pillows and arm rest, I could hold the baby with no strain on my chest. My wife was incredible during this time as well keeping the house going and taking care of the kids. It really is a surprisingly short time frame (barring setbacks), that you can be moving around and helping. I was making dinner for everyone and passing out halloween candy for the neighbor kids two weeks out while my wife took ours out trick-or-treating.

 

[njean]

Wishing you the very best with your upcoming surgery, Sara. And don't spend your time worrying about the clicking, coumadin, or how long your valve will last! Take it one day at a time, before you know it, it and with the grace of God, it will be years behind you!

 

[Guyswell]

Sara,

I received my tissue valve at age 41 and it calcified by age 49. On July 3rd of this year, I received a mechanical valve and I now take warfarin. Yes, the valve clicks and sometimes my heart thumps against my chest when I take a deep breath. It doesn't wake me up and it doesn't keep me awake. At night, my wife can hear it when we're spooning in bed. My teenage son with bionic hearing can hear it in church if he's sitting next to me. So far, the clicking sounds and the warfarin have been no big deal. If I had to do it over again, I'd make the same decisions. The second surgery was easier than the first.

As for holding your daughter, you shouldn't pick her up for six weeks but I don't know why she can't cuddle in your lap if someone puts her there for you.

Good luck and try not to worry too much. Having a mechanical valve and taking warfarin probably won't be a big deal for you either.