I have 4 days to decide - help!

[OinkHeart]

I just spoke with Dr. Starnes' assistant and he imparted some more information to help my decision making.

He said that he believes Starnes would support the decision to go for a tissue valve. Their thinking is that the prevailing trend of doing TEVAR procedures to replace aortic valves will become more common-place and even the first choice to address aortic valve issues and that putting in a tissue valve now would get me to a point (10 - 15+ years) where the next surgery would likely be TEVAR.

He also said that if I had come to Dr. Starnes today as a 32 year old needing AVR he would recommend going for a tissue valve rather than Ross (my first OHS) or mechanical (my second OSH) for the reason stated above.

He also mentioned a statistic that shows every year you are on Coumadin your risk of having a major event increases 2%. So being in Coumadin for 20 years equals 20% risk and so on.

I have the weekend to mull it over but I am leaning towards tissue.

Any more thoughts guys?

Thanks!

What do you mean by your risk of having a "major event" goes up 2 percent every year your on coumiden? What is a major event? Are. You saying it's the likelihood you will be in a accidet whwre you bleed out? Or is a major event some bad side effect from the coumiden?

 

[cpj123]

I am rookie...so please excuse me if I have hi-jacked this post. It just seemed silly to start another similar one.I found out a month ago ( endocarditis ) about my BAV. Made it to 52 with no symptoms and no clue.
I met my surgeon the other day. My wife and I were ready to battle it out over the mechanical valve. All the medical professionals I had dealt with assured me I would only be a candidate for a MV. Well he right away said he would not want one either and said he did 90% tissue. He was very careful with his words about TAVR but I it was pretty easy to gather he felt it was going to be my next option down the line.

Great arguments for both..I have until December and I plan on keeping an open mind. Great site BTW. [h=3][/h]

 

[pellicle]

Hi

I guess "welcome aboard" and glad make your acquaintaince.

... My wife and I were ready to battle it out over the mechanical valve.

does this mean that you differ in view as to which is preferable?

you may have already read my blog post http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

I encourage you to read it carefully and follow up some of the articles referenced in it, in particular the presentation from the fellow at the mayo is a good start. The important thing to remember is this: read to learn, read with questions in your mind. Don't just read to gather opinions.

My opinion is mine and was formed on my experience. Your experience will be different, which is why you need to form your opinion with reference to yourself.

Some 'perspectives' to keep in mind.

I believe that in life we have changes. Some our own choice, others are forced upon us. For instance, how long have humans been having kids? Yet still despite all that historical experience still people find "I never expected it would be like this"

In truth life goes on and we adapt to changes. We are never dealing with things as we started (life is not the same at 12 as at 21 or at 51) and while we may occasionally wonder about going back noone has and noone can. So I say embrace change not hate it. Learn to adapt and change. I know that for me when I faced my last choice I did not want to be taking medication (warfarin) every day - because that was a landmark change in my life, a concrete sign of aging that I did not wish to embrace. However the logical benefits of me having a mechanical were too clear to ignore so I chose the obvious. As it turns out for me being on warfarin has been helpful in that it has had the side effect of me paying attention to my self more. I have learned much.

Well he right away said he would not want one either

I'm willing to bet he wouldn't want any valve either ... easy to say when you're not making the choice *for yourself*

I am sure by now (from your writing it seems) you have read an amount here. The choices are basic:

tissue prosthetic = a certain redo in the future (unless you die earlier) ; gradual decline of the valve with the last year or two of the the valve life being similar to your experiences with valve dysfunction now

mechanical prosthetic = significantly high likelyhood you will need no further surgery (but aneurysms may change that as I found) : requirement that you are on warfarin for the remainder of your life.

To me (as to many others here) being on warfarin has been "no big deal" and (for me) has been a beneficial education in taking control over my situation.

Read around, inform yourself and form your own opinion on the information you find. In your search for information I urge you to ask questions about what you read and to always check the veracity of the information (veracity: verifiability, trustworthiness, correctness)

Best Wishes

 

[dick0236]

Great arguments for both..I have until December and I plan on keeping an open mind. Great site BTW. [h=3][/h]

Welcome to a great site for info about OHS.......you have several months to explore the pros and cons of valve choice and have time to make YOUR educated choice as to what is best for you. There have been many "passionate" arguments on this forum over the years regarding "the best choice". Most are happy with their choice and have accepted the "pluses and minuses" of that choice.

The real "plus" for the newcomer is that our stories prove this is a doable surgery and life goes on afterwards.

 

[cpj123]

Thanks to you both... life altering moment for sure.....I had no clue. I did not even know how to navigate my insurance because I had never used it outside the GP. Time to dig in and figure it out. I have a feeling I will be around asking a lot of questions.

 

[Paleowoman]

Welcome rookie, I take it that's your name Yes this is all certainly life altering ! That's good that you have time to look into things and to decide which type of valve is best for you. I had a bit more notice than you, knowing I had BAV many years ago (no symptoms though, not even just before surgery), and my cardiologist told me two and a half years before I had surgery that it would be coming up "in about two years time" and to then thoroughly research the mechanical or tissue valve choice (I was 58 then and I had surgery when I was 60) and to research surgeons too. None of the medical professionals I saw ever tried to dissuade me from the type of valve I wanted, after all it is my body and I have to live with the valve, not them ! I left it to the surgeon to choose the actual manufacturer and model of valve since they often can't tell until you are in the operating theatre. As long as we go into this with "eyes open" as to our preferences, knowing the pros and cons of our choice, I think most of us are always happy with our choice.

 

[David W]

Hi Dean and hi everyone.

Dean I hope you are recovering well. This is my first post so a big high from London (although I'm actually in Wales writing this). I have followed this thread with much interest. I have recently found out that I have a 6.1cm aneurysm on my aorta and need to get it fixed in about 3 weeks. So I have to make the decision re tissue or mechanical. I'm an active young man, 44 (just turned yesterday) and all of the information out there about what valve to have has been a bit of a head mash! But I cannot ignore that the sentiments Dean has posted in this thread that allude to the possible development of better tissue valves in the future and better key hole surgery with TAVI. I guess like Dean I'm voicing my own opinions and optimism for technological advances but I'm all ears to her the opinions of others. Any information and point of view will be greatly appreciated.

David

 

[Paleowoman]

Hi David - a big hi from London too ! Hey there are more people from the UK joining which is great as there isn't a valve replacement specific forum in the UK.

You say you have an aortic aneurysm Do you also have a bicuspid aortic valve ? I mean, are you going to have your aortic valve replaced as well as work on your aorta ? Forgive me if I misunderstood, but not everyone with an aneurysm needs a new aortic valve.....do they ? If you do need a new valve, have you discussed mechanical and tissue valves with your doctor or cardiologist or cardiac surgeon ? Three weeks isn't a long way off. It's a very individual thing, which one to go with. I know they normally recommend that younger people go with mechanical but if you have strong feelings about it that is another thing. Whereabouts are you having your surgery ?

I had aortic valve replacement at St Anthony's in London just over 18 months ago. I am very active, I even do weight lifting. I was 60 at the time of surgery and went with a tissue valve, speicifically because I didn't want to hear the ticking noise nor be on warfarin, for me it was a no brainer as I was very sure I didn't want those. Some people don't mind the noise or warfarin. I was lucky in that I had a lot of time to think and research about my choices as I knew years ago that I had a BAV.

 

[David W]

Hi and thank you for the reply. Yes I do need a new valve and they will also have a tinker around with the aneurysm. One surgeon said tissue and change it via keyhole surgery a little further down the road, then another surgeon came into the room and said mechanical!!! But I think having read quite a bit of material on her and other forums and general searches online I do think I'll plum for the tissue valve and put my money on the wonders of technology to help out in the future. My doctor also recommended the tissue. I know there are a lot of folk in here that have gone for the MV and it's great to hear it working out for them. I am having mine done at Kings College hospital in Denmark Hill. How long did your recovery take Paleogirl and was it your first op?

David

 

[pellicle]

David

I can only speculate on the future, but right now most of the keyhole and TAVI is restricted to those who are so frail that they would not live sny other way. To me speculation on the future is akin to gambling. If you walked into a casino how much would you lay on Black at the roulette wheel? Yet that's actually a safer bet in odds.

As a kid watching the join landings I thought we would have a permanent base there now. We will but not in my lifetime. Mechanical valve odds are much more known. So while its not a certainty that a mechanical with an aneurysm graft will last forever its a sound possibility. No other bets in the casino offers that.

Place your bet and roll the wheel , but it is only your bet (not mine) to place.

 

[Paleowoman]

One surgeon said tissue and change it via keyhole surgery a little further down the road, then another surgeon came into the room and said mechanical!!! But I think having read quite a bit of material on her and other forums and general searches online I do think I'll plum for the tissue valve and put my money on the wonders of technology to help out in the future. My doctor also recommended the tissue. I know there are a lot of folk in here that have gone for the MV and it's great to hear it working out for them. I am having mine done at Kings College hospital in Denmark Hill. How long did your recovery take Paleogirl and was it your first op?

Hi David - I think that's reassuring that you have both a surgeon and a doctor recommending tissue valve, I mean reasuring that you're not bonkers going with tissue in this day and age. I'm not so sure we can rely on keyhole in the future but definitely surgical techniques and care of patients does improve year on year. Anaethetics also improve year on year. All that helps.

It was my first heart op yes. How long did my recovery take ? That's a loaded question as it depneds what 'recovery' means ! And it's all certainly relative. I was completely asymptomatic prior to surgery, even doing weight lifting and a six mile walk the day before admission for surgery, so it took several months to get back to that level of fitness. You're not allowed to do heavy weight lifting post surgery so I had to wait t.o get back to that. I'm pretty sure that if I had had symptoms though prior to surgery I would have felt tons better very quickly. I mean it's the contrast pre and post surgery. If I hadn't done weight lifting before surgery I reckon I would have said I was completely recovered by around four months post op - by that I mean no more incision pain, but all the tests and echos came back fine at just two months, and I wasn't on any medication after two months either. I started cardiac rehab at two months and the cardiac nurse was really surprised at how good my level of fitness was, he said it was better than most people my age who've not had heart surgery ! It was only me who know I could be fitter and I still had incision pain that bothered me….that seemed to take ages to go away. Right now I feel perfect and it's only seeing the incision scar that tells me I've have a heart op. The fact that I will have a 're-do' does not bother me - I know what it's like now and know what I need for the next surgery when it comes to my care.

Do watch for things like pain levels, the better pain control you're given the eaiser it is to do the exercises you must do post surgery, breathing exercises and walking, which aid in recovery. Your appetite and gut may be affected by the surgery and medications - that may or may not be a problem to you depending on whether or not you want to lose weight ! Otherwise, I'm sure you'll get great care at Kings College. Make sure you get an appointment with your GP for soon after you expect to be discharged from Kings - you know how long it can take to get a GP appointment these days ! You may need to sleep in a recliner or sofa as it can be difficult lying down flat in a bed for a few weeks post surgery…..that's not the case for everyone but if you look around on the forum you'll see what people found useful post op !

 

[David W]

Pellicle and Paleogirl

Again thank you so much for your input. I think that like everything there will be a gamble for sure and in spite of a good surgeon and op there is always going to be a magic for something to go wrong. I've been given the stats and read the team sheet and I think I'm going for the tissue given what I have read thus far.

Paleogirl girl thanks for sharing your story with me. If you have a re op will you have to go through the chest again?

 

[MethodAir]

Hi David,

I turned 44 this May, had emergency AVR and ascending aorta repair on Feb 20/2015. My cardiac surgeon (very well regarded) basically told me mechanical was the only way to go, considering my age. And I agreed. The surgery can be extraordinarily debilitating, and not the kind of thing you ever want to go through again, if at all possible, in my opinion.

 

[Paleowoman]

Paleogirl girl thanks for sharing your story with me. If you have a re op will you have to go through the chest again?

Hi David - I've no idea if a re-op for me will be through the chest again, but I've no idea either if it will be with keyhole. I've been told that the tissue valve I have should last me from 12 to 15 years, so whatever is best for me when the time comes I'll go with. We've been dealt with having to have aortic valve replacement (and with you work on your aorta too) through no fault of our own, it's just what life has dealt with us since we were embryonic. So I'm prepared and okay with having a replacement again to keep me going. Yes I know it will be painful and debilitating for some time, especially as I'll be older then. (I wouldn't though have been happy having a ticking noise going on for the rest of my life or having warfarin - that's just me, both would really bother me - I have other health issues so warfarin would not be so easy for me - but honestly the noise would really get me). In a way I feel I am already preparing for any future replacement because some things didn't go according to plan with my AVR 18 months ago so I know what I need to let any future cardiologist, cardiac surgeon and hospital know. By the same token I should say that things that I had anticipated as being scary or difficult with surgery weren't so bad. And I stick around here on the forum, both to help others on this journey and to help myself

 

[Bonbet]

Hi, valve choice is a very personal decision. I always assumed I would only be offered a tissue valve as I am 62+ but at my most recent check in, both the cardiologist and the surgeon recommended mechanical. I do not like the idea of being dependent on a pharnaceutical for the rest of my life, I also hate living with the risk of stroke from either a thrombis/emboli or hemmorghage. BUT, it looks like what I hate even more is the slow deteriioration of a tissue valve which mimics what I am going through currently. Worrying if a bout of dizzyness is a symptom of valve failure or just dehydration. It is a slow demise and the next OHS does not happen as soon as you start to deteriorate, you have to wait and wait until it is severe enough to warrant OHS at 70 or 80. It is likely to be a gradual decline in vitality. I had not even considered a mechanical valve before they suggested it and subsequently, I spent the last 3 months thinking and reading about it. The watching and waiting is hard for me, and the slow diminishment is harder. It isn't like a tissue valve projected to last 15 years works great until year 15. It is more like it starts failing at year 10 and then at year 15 it is bad enough for a re-op. I work out regularly and have always been physical so my gradual loss of stamina (is it valve or age?) Is very difficult to live with. I would have to say that for me that was the determining factor. All those years of slow deterioration before the next OHS.
Also, the docs said (and I take this seriously with a grain of salt) that in their opinion a tissue valve wears out faster when the recipient is more active - which is something I hope to be when I finally get this failing valve replaced with a shiny, durable new mechanical valve. At least that is my current thought process. Bonbet

 

[Paleowoman]

Hi Bonbet - whereabouts are you based ? I know that in Europe and UK they ideally like to do valve replacement surgery before a person has any symptoms which is when the person is stronger and the heart not 'damaged' or enlarged, whereas my understanding is that in North America they wait until there are symptoms which is what you appear to be experiencing. I'm confident that my tissue valve will be replaced when the pressure gardient and other indicators from echocardiogram show that the valve has deteriorated but before I am feeling symptoms of that deterioration - they will chose the right moment, I'm sure.