A Valve Replacement in my Future...

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Thanks to all of you who are on this site. It has really been a gift for me. I have known about my heart murmur since childhood, born with a hole in my heart that closed on it's own, but was never told that my problem was my aortic valve until Sept. 1999. In 1986, I had my first echo and was told 'mitral valve prolapse' 'nothing to worry about'. Years go by (ignorance is really bliss) doc listens to the murmur, 'your ok'. I started having chest pains in '99, a new cardiologist repeated the echo and said 'you don't have mitral valve prolapse, who told you that?' 'you have a bicuspid aortic valve' and he showed me the echo, clear as day 'fish mouth'. I had a stress echo and PVCs showed up there but not on my EKGs, I also had palpitations but nothing excessive. My regurgitation in '99 was mild and I was told to have my PCP monitor, come back in a year for repeat echo. Well, I never went back as I figured the PCP could monitor just as well, anything shows up, I'll be sent to the cardio, go from there.

I used to run a lot, 4 marathons and lots of 5Ks, never really liked the 10Ks. My times started to slow, just thought I was getting older. Well you know how overlapping issues can cause you problems and frustrate you and your doctor? I had a pinched nerve in my neck and was advised by the neuro to not run with it so I quit, 2 years ago. Last year, due to severe symptoms from my neck, I had a dble cervical fusion, titanium plate, donor bone. One year post-op this year, I finally felt good enough to start running again. :)

I'm trying not to make this too long....I noticed this year that when I did any kind of yard work, pushing a lawn mower, carrying 40 lb bags of garden soil, mulch, etc. it was kicking my butt. I'm not a weakling and don't consider myself out of shape....I was getting older. Another time when walking to my car at work and talking on my cell, I had to apologize to the gal as I was getting short of breath. Blew this off too.....Started taking the stairs at work to strengthen my legs to finally get back into running, 1 year post op neck surgery, feeling good enough to try. I noticed by the time I got to the 3rd floor, I was breathing heavy, by 6 I was out of breath and it seemed to take a while to recover. Thought OK, you really are getting older and you are out of shape.....After 3 months, I should have noticed the training effect, still nada.

I went for my yearly physical in August, EKG was abnormal and my BRAND NEW PCP referred me to a cardio and said get in the next two weeks and if not here, call me and I'll get you in. What's wrong? 'You have a blood flow problem or a blockage'....After many tests, echos, TEE, Cardiac Cath, my valve is leaking severely, my ejection fraction is 55%, and the cardio thinks it's best to preserve my heart health by having surgery now.

Met with the surgeon, discussed options, told him about VR.com, and he explained my options, mechanical, tissue, Ross. Then I threw him for a loop, "I have ITP". Coumadin will increase bruising, won't effect my platelets, but effects other mechanisms of clotting. I think he is leaning towards tissue, but I want an OnX. He has experience with OnX, I followed up with a hematologist, my platelet counts never dropped below 115K. Hematologist assures me that if my platelets drop to 70K for any reason, they would have to intervene.

My surgery is scheduled for Nov 14th. So my dilemma, I have ITP, I want mechanical so I don't ever have to do OHS again, I know I'll have to have coumadin, I don't want the Ross, and I'm afraid of the tissue valve wearing out quickly and having to have OHS again.

Are there any members that have ITP? If so, do you have a tissue or mechanical? How are you managing on coumadin? Does a mechanical valve work better for athletic ppl? I'm not elite by any means, just want to run for 6 miles and feel good! My new cross-trainers are waiting for me post op.:)
 
I can not offer you any input but wanted to welcome you and wish you luck. I too will need aortic valve replaced and mitral repaired.

Keep us posted and I know someone with a lot more knowledge than me will be along shortly to help you through this.
 
Welcome, Louise. I can't offer you any advice as to the ITP, but I will put you on the calendar for November 14th and am sending you best wishes as you make this decision.
 
Hi Louise, welcome to the group.:)
My story is similar, diagnosed with mitral valve prolapse at age 20. Years go by, periodic palpitations, nothing more. I was almost 40 when I was told that it was aortic stenosis, when I thought I was just "out of shape", it was more than that......scary stuff.
Choosing a mechanical does not rule out a second surgery, but the odds are much, much lower.
Best wishes.
 
Louise,
I don't have personal experience with ITP, just read up on it some, but I do know that regarding your post-op athletic performance, the choice of valve will make little difference.
You don't mention your age. Sometimes that can help with the decision to go mechanical or tissue.
What does your cardiologist recommend? The hematologist?
Is there a chance you will need medications for the ITP? I know that corticosteroids are sometimes used to treat it. Will that have an interaction with coumadin?
Do they routinely test your platlet count? If so, then having an INR level monitored could be very easy.
Anyway, I think you have a harder decision to make than most, but whatever your choice, it will be the right one for you.:)
 
just wanted to welcome you to VR. It's a great place to be for information and even though you have no answers re ITP so far, don't give up since we have many members who check in throughout the day - and some once a week. Somebody ought to have some info.
Glad you are here..
 
Louise, welcome to this forum. I don't know of anyone else who has had to deal with ITP when considering valve choice. I know a good number of doctors do consider it to be an autoimmune disease and there are many of us on the board who have autoimmune issues of various kinds. How and when did you find out you have ITP? I think any valve choice would put you back "in the run" again. You mention ON-x....supposed to have great hemodynamics which could be important to you. There are some with mechanical valves who develop an anemia because the valve damages a percentage of the RBCs as they traverse the valve. I think I would really seek the imput of a good hematologist. There are no guarantees that there would not be another surgery if you get mechanical but there are no guarantees you won't end up on coumadin for one reason or another if you get tissue either. Either choice should improve your health and we are so fortunate to have any choices at all let alone such good ones.
 
Thank you for your warm welcome and replies. I'm 47 yrs young, and from what I have read from tobagotwo, Famous Tobagotwo Writings On Valve Selection, I can go either way, just what is best for me and what I'm comfortable with. The cardiologist did not state a preference, the hematologist is on my side with the mechanical because he said if it were him, he would not want to have to go through it again. He feels my platelet issue is mild enough for now and corticosteroids would be the first option for me. I think steroids interact with coumadin. There are other drugs available, the hematologist really helped me feel at ease. They usually allow ITP patients counts to drop to 20K, but when coumadin is being used, he said they would not allow mine to drop below 70K. ITP is autoimmune and I don't know if that could cause problems with tissue valve, this is one of my questions for the surgeon, my preop with him is the 5th. I've been tested for autoimmune illness (lupus and others) all tests came back negative, a good thing. I have platelet counts done every 6 months by my PCP, the hematologist wants me to come back after my surgery and I was thinking of having him monitor everything for a while, just to feel safe, then I want to home test INR levels.

I was diagnosed with ITP in 94 when my routine blood work kept flagging platelets, lab advised my PCP to retest and use blue top tube. I was monitored every 3 months then. When they dropped to 115 I insisted on a referral to a hematologist who then did a bone marrow biopsy, my platelets are coated with an antibody, I can't take aspirin, puts platelets to sleep for 10 days, I can take advil and alleve but not for long periods of time. My then hematologist said runners don't bruise around the knees.

I learned a lot from this forum and additional research. The no guarantees of not having to take coumadin with a tissue valve is also why I'm leaning towards mechanical, and the ONX because of what I read about it, less turbulence, lower INR, etc.

Thanks again for the warm welcome.
 
Has anyone evaluated your aorta? Because you have a BAV, you are at risk for dilation/aneurysm of your aorta - usually the ascending aorta.

For your safety and potentially to minimize the number of procedures you need in your lifetime, the aorta must be considered, not just the valve.

My husband required a second surgery 11 years after his first valve surgery - because of his aorta. Some people end up back in surgery much sooner, when the ascending aorta is not addressed.

You may or may not have valve complications also - I wish you all the best as you make these decisions. No matter what, always be sure that you are followed carefully for the rest of your life.

Best wishes,
Arlyss
 
Boy, you've had a rough couple of years, I'm sorry things are so difficult.My SIL has an autoimmune disease Sjogren's syndrome, that caused ITP and had her spleen (actually ended up being several small spleens) out and my 19 year old neice "just" has ITP, but not the same disease as her Mom but she had to have her spleen out. But neither one has heart issues, so I can't offer any advice about which valve. I know that the major things they have to worry about is head or GI bleeding, but I don't know if coumadin would increase the risks or not, but most things I've read about ITP, say you shouldn't take aspirin, or coumadin. But to make it tougher, I don't know what effects ITP could have on tissue valves or repeat surgeries.
Maybe you should start a second thread w/ITP in the title to see if anyone else has it. I also would ask Al his thoughts.
I hope you are able to get good answers from your doctors that give you a clear cut feeling what would be the best way to go.
Lyn
 
Arlyss said:
Has anyone evaluated your aorta?

Arlyss: Yes, I had echos of ascending and descending, all looked ok. I'm still going to ask to have them looked at real good while he's in there though to make sure. I read on here that someone had normal echos but had issues once the surgeon was in there.

Lyn: I've been tested for Sjogren's syndrome,I have Raynauds phenomenon with my hands, came back negative. My hematologist said they don't like to take the spleen unless absolutely necessary because it is important for fighting infection.

I'm still leaning towards the OnX.
 
Louise said:
My surgery is scheduled for Nov 14th. So my dilemma, I have ITP, I want mechanical so I don't ever have to do OHS again, I know I'll have to have coumadin, I don't want the Ross, and I'm afraid of the tissue valve wearing out quickly and having to have OHS again.

Are there any members that have ITP? If so, do you have a tissue or mechanical? How are you managing on coumadin? Does a mechanical valve work better for athletic ppl? I'm not elite by any means, just want to run for 6 miles and feel good! My new cross-trainers are waiting for me post op.:)

Louise - welcome to the board. You sure have been thru alot. I can relate to the "I thought I was getting old thing" - I thought I was just getting fat when I was out of breath! LOL I wanted to comment on choice of valve - I was worried about getting a tissue valve and having a repeat surgery, but my doctor explained that at 50 years old he wouldn't want me to go on coumidin for the rest of my life (I know those of you on it, don't think it's a pain though). He said there are new procedures on the horizon and if/when I needed another sugery that it most likely wouldn't be the same kind. He seemed to think the tissue valves last longer than people say they do.
Good luck!
 
Even with a tissue valve I take 325 mg enteric-coated asa every day. I have other clotting issues so that's one reason to maintain a doseage of anticoagulant each day.

Tissue valves have come a long way since many primary care physicians have had their schooling in cardiology, so depending on how long your physician has been away from med school and daily contact with specialists, your PCP may not be aware of all of the pros and cons in using them.

Valve viability has been predicted to 20 years or so. The only thing is the newer stentless bioprostheses and those preserved with differently managed techniques, haven't been in use that long.

There are so many things we can linger on with our shoulda coulda woulda comments that we lose sight of the fact that one of the worst things that can happen to a body has occurred; and that we all can persevere and be successful regardless of it.
 
Mechanical valve comment

Mechanical valve comment

This is my first time on this site, in this forum and posting, but I did want to offer my insight. If I could go back and make the choice again on the type of valve to have I would have NOt choosen the mechanic valve. (St. Judes) I'm young and have already had 2 OHS's but being on coumadin for the rest of my life really sucks. I could care less about the monthly Pro times. It's the fear of not taking it and getting a blot clot. I'm 43 and I need a bunion removed. I have to go off the coumadin. I need a little arthoscopic knee surgery. Have to come off the coumadin. I can't get my varicose veins treated, or even a colonoscopy done without being off the coumadin. I'm thankful for Lovenox, but even that has a complex set of rules and procedures that go along with it and of course it only lessens the risk of blood clots. I don't mean to sound so dismal, :( but I'm going through this all right now. ) BUT...I happy to be alive, thanking God that I do have this loud, clicking valve in my chest that keeps me alive.

Malinda
 
maldlr3 said:
This is my first time on this site, in this forum and posting, but I did want to offer my insight. If I could go back and make the choice again on the type of valve to have I would have NOt choosen the mechanic valve. (St. Judes) I'm young and have already had 2 OHS's but being on coumadin for the rest of my life really sucks. I could care less about the monthly Pro times. It's the fear of not taking it and getting a blot clot. I'm 43 and I need a bunion removed. I have to go off the coumadin. I need a little arthoscopic knee surgery. Have to come off the coumadin. I can't get my varicose veins treated, or even a colonoscopy done without being off the coumadin. I'm thankful for Lovenox, but even that has a complex set of rules and procedures that go along with it and of course it only lessens the risk of blood clots. I don't mean to sound so dismal, :( but I'm going through this all right now. ) BUT...I happy to be alive, thanking God that I do have this loud, clicking valve in my chest that keeps me alive.

Malinda
I am looking at an AVR and a MVR in the near future. Did you have a pig valve the first time? Please tell us about your experience with why you had to have a second OHS. I need all of the information I can get. Thanks
 
Malinda - Welcome!

When did you have your St. Jude's installed? One of the things that those of us that have been on Coumadin for a long time understand is that the worst part of being on Coumadin is dealing with doctors and medical people who don't know current warfarin protocol. You may want to go to the Anticoagulation forum and read the New To Coumadin sticky and see if there is anything there that might speak to some of your concerns. (even if you aren't new to Coumadin)

If a colonoscopy is a routine diagnostic, then you really shouldn't need to go off Coumadin. Some doctors feel comfortable in snipping off any polyps they find (if they're not too large) because they get cauterized right away. We read some crazy stuff posted here about people being told to go off Coumadin for PAP smears, dental cleaning, tooth extractions etc.

If your INR is in range you don't need to worry about throwing a clot. And just so you're aware - you would have the same risk of throwing a clot with a tissue valve as you would with a properly anticoagulated mechanical valve. The draw-back of taking Lovenox is the bleeding. Throwing a clot while on properly dosed Lovenox or Heparin is rare.

Since you already have your St. Jude - you're stuck with it. :) So look on the bright side! Another valve replacement would be your 3rd OHS. The risk increases with each additional surgery. For me - it wasn't so much that, but that my heart issues had already taken valuable time away from my kids and husband and kept them from leading a normal life. So for me, raising my children to adulthood (which I've done) without them having to go through yet another of Mom's heart valve deteriorations and surgery was a big bonus. 16 years later - I'm now a grandma of the most gorgeous 1 year-old in North America:D (see avatar!). I've traveled to Europe twice (right about the time I figured I would have been going through more valve deterioration and replacement surgery, had I gone tissue) and I'm going to France again for 2 weeks to see my daughter who is now living and teaching there (and was in kindergarten when I had my valve replaced). My husband and I bought our midlife crisis this summer and have been having fun riding our Harley on weekends.

I read your Profile and music and church are are a huge part of my life. I've sung all my life and couldn't sing for 3 years prior to my VR. After my VR the voice (and breath) came back and now I'm a music director at a church. (I do Contemporary worship music). When my kids were small and I was Sick Mommy, I had a hard time not feeling totally cheated. The last 16 years have been a huge blessing. My hope for you is that you can look back in a few years and see that the grass is still greener on your side of the fence.

Best wishes.
 
Hi Louise!

I take my ONX for a run 2/3 times a week and swallow my warfarin pills with a smile on my face. No problems whatsoever. Call me crazy, but I'm having fun dosing myself with this stuff using a Coagucheck. By the way, home testing is beyond cool :cool:

Follow your heart and mind. Choosing a valve isn't trivial but don't be scared of warfarin, it's a great drug that keeps you very safe with no significant risk when managed properly. The doom scenarios ain't true.

Best wishes,

Dustin
 
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