In shock - 12 great years later, just discovered I need another OHS

[Guest]

Hello old friends –

I haven’t visited this site in at least 10 years. In early 2006, I was a spry 43-year-old, coasting along as a successful business executive, flying all over the country, running half marathons, married to a great guy that I didn’t see much of! During a routine physical at the end of March that year, I was diagnosed with a badly leaking aortic valve and an aortic aneurysm. A good friend turned me onto this site, and I immersed myself for 6 weeks before having OHS at Northwestern in Chicago on May 12[SUP]th[/SUP], 2006. After carefully examining all of the options (thanks in great part to VR.com), I chose a Medtronic Freestyle valve and never looked back. During these past 12 years I have lived my best life: my husband and I (now both retired) have led a tremendously active lifestyle, hiking lots of beautiful places (including the Grand Canyon, rim-to-rim -- twice!), biking through Europe, golfing, yoga-ing…you name it. I see my cardiologist (who I love and trust completely) once a year, happy to have him say, “Everything looks great, see you next year.” I continue taking my two baby aspirin each day, as I have for all these years. Life is very good.

But (just HATE that “but”), at my annual appointment this year, my cardiologist looked at my echo, checked me out and said he wanted me to have an MRI. Yuck. I had the MRI on Monday and on Thursday he let me know that my valve is failing and that my aorta is at 5.2 – the same size as my aneurysm in 2006! I am in complete shock. He wants me to have surgery (apparently my only option, TAVR is out of the question) within the month. At 55, I’m looking at my second open heart surgery. I can’t tell you what a bolt from the blue this is.

And so – it’s déjà vu all over again – I jumped on this site, as I did so long ago, for information, counsel, support and guidance. I couldn’t believe the names that I recognized from 2006… epstns, tigerlily, Marguerite53 and, of course, founder Hank. (Marguerite, it looks like we should probably talk, given what you just went through.) I’ll be meeting with my cardiologist and a surgeon this week to discuss options. In the meantime, I welcome any input and counsel from this generous community.

I do have a bit of preliminary information: 1) The recommendation at this point is that I get a stented tissue valve with a dacron sleeve. 2) It sounds like scar tissue from the last time will be a significant factor (again, Marguerite…we’ll talk), making it a bigger, trickier surgery. 3) We live in Chicago, so I’ll probably have the procedure done at Northwestern again (I had an excellent experience at NW in 2006, but I’m open. My surgeon has moved to another part of the country, so I’ll be having someone else do the procedure). The good news is that I have relative (!) youth, good physical condition and great optimism on my side. I know how fortunate I am and appreciate that I have some time to weigh my options and prepare for a good outcome.

Thanks in advance for whatever information you can send my way. Here we go again!

Kristine

AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Northwestern Memorial Hospital, Chicago, IL
"In the Waiting Room", April 2018, age 55

 

[Kristine55]

It looks like I'm posting as GUEST, not my user name, Kristine55 (and not KMS, which was my user name in '06). Hopefully this post will identify me correctly.

Kristine​

AVR May 2006, age 43​

Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair​

Northwestern Memorial Hospital, Chicago, IL​

"In the Waiting Room", April 2018, age 55​

 

[knotguilty]

Kristine, Sorry you have to go through this again. But I have to say you have all positive things to think about. It sounds like you are in very good health. You get a new valve to start over with and some new piping. I had my AVR at 55 and because I was in good health, I was in and out of there. In fact I tell people how I did a break job on my sons car after about 3 weeks post surgery. (I would not recommend that to anybody though). My doctors really are treating me as if I should never need another replacement. And the last thing is look how lucky you are that you kept up on your health and the doctors caught that. That would not have ended well otherwise. Stay positive and good luck. Let us know how you make out.

 

[Marguerite53]

I've messaged you, Kristine.
)

 

[Marguerite53]

I have messaged you, Kristine.
Best wishes.

Marguerite

 

[pellicle]

Hi

It looks like I'm posting as GUEST, not my user name, Kristine55 (and not KMS, which was my user name in '06). Hopefully this post will identify me correctly.

seems to be ... welcome back, I guess that I'm one of the "new faces" for you.

You seem very level headed and you've done this before, so you know you can do it again. All you have to do is just bring yourself to the place and the solutions find their way to you.

A bit about me first, I'm 54, I've had 3 OHS with my first (a repair of the cusps) at 10, another at 28 when that repair work gradually calcified and my valve became "stenotic". I had a homograft done which was outstanding in that it worked right through till I was 48 and needed the third operation. I was advised that at my age (young, 48) a mechanical would be my best bet, which I have now still (of course).

I guess that for you the decisions you made in the past were just that, decisions made then. You now face decisions on what to do next.

If I was you (and I have been) I would look carefully and calmly at all the facts and make your decision from a fully informed stand point.

Think past this moment and think "down the track" ... for in this time its all to easy to "get past the moment" and forget about the next 30 years and what you want.

More about me is that I'm a very keen outdoor person, I'm here in Finland (packing up to return to Australia) because I love the deep cold and the freedom of cross country (off track) skiing. I love going out in stuff like this:



I ride a motorbike.

I have just got back from visiting friends in England (where I helped them work on their roof). I do a lot of work on and around my house with power tools, wood and steel.

So if when you're thinking about the choices you feel like "I'm to young to be on warfarin" ... well maybe its actually a better deal for the young (ask Dick or Superman).

As always if you ever want to chat or just chew the fat please email me and I'm happy to give an ear ... from someone who's been there too.

Best Wishes

 

[Kristine55]

Thank you all so much for your kind and thoughtful posts. It's been 48 hours since I learned about this and I'm already feeling great comfort and support from the VR community. Thank you!


Kristine

AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Northwestern Memorial Hospital, Chicago, IL
"In the Waiting Room", April 2018, age 55

 

[LondonAndy]

Forgive me for how this will sound, but I don't know how else to put it. Why are you in shock at needing a replacement for your tissue valve? Is that not what you expected when making that choice 12 years ago? I cannot pretend to be up-to-date with what seem to be excellent developments in the world of tissue valves, promising longer service life from what I have read on this very useful site, and only time will tell if the current claims are correct or whether in 15 - 20 years time those making that choice will need a replacement or not. I hope not, but as an insulin dependent diabetic I have been reading for years that there will be insulin producing implants and I won't have to inject insulin 5 times a day. But here I am still injecting.

So for me, at age 48 about 3.5 years ago, the choice of a mechanical valve seemed the obvious choice to minimise the risk of re-do surgery, probably for the rest of my life with the easy and good management of Warfarin that is now possible with a hand-held home meter. You've outlined some of the issues for this re-do you are having now; what do you think those issues will be next time, in 10 - 20 years time?

I am genuinely interested in the tissue valve developments, and so look forward to some 'opposing views' and whatever you decide I wish you well.

 

[skeptic49]

HI Kristine,

Sorry to read that your prosthetic valve is failing, but it can be fixed. That's the good news. You write that you were initially diagnosed with an aortic aneurysm: "During a routine physical at the end of March that year, I was diagnosed with a badly leaking aortic valve and an aortic aneurysm."

Was the aneurysm not addressed in your first surgery?

Best wishes,

Jim Kelly-Evanbs

 

[Superman]

It appears it reading the OP, the aneurysm was just patched, not replaced with Dacron the first time. I’m not up on what that means in terms of long term results, but about 12 years based on this sample size.

OP, welcome back to the forums. Looks like we just missed each other as I didn’t join until 2009. That’s when my aneurysm was discovered after I had lived happily over 18 years with a mechanical valve that I received in 1990. I did not expect another OHS, but I didn’t know about aneurysms when I was a teenager. My 2009 was successful as well and it’s been 9 more years since that. I stuck with mechanical, being used to Warfarin after being on it that long.

I won’t sell you one way or the other. Whatever passes the sleep at night test. Limiting the prospects for another surgery, or avoiding Warfarin are the same choices you have now that you had last time.

Good of luck as you plan this out and I wish you a speedy recovery.

 

[neil]

Kristine hi, am sure your in good hands and will be fine, if there recommending another tissue I would lean towards that, there not experts for nothing, mine is 10 yrs and still honking away and with no warfarin to worry about, but the choice rests with you, good luck

 

[Rob88]

Best of luck with your decision and upcoming surgery! I'm glad you were able to enjoy your last 12 years and am sure you will be fine moving forward.

 

[pellicle]

Hi

While you are thinking, go grab a cup of coffee (or tea) and watch this presentation by Hartzell V Schaff.
He is an exemplary surgeon among the many exemplary surgeons at the Mayo

https://www.mayoclinic.org/biographies/schaff-hartzell-v-m-d/bio-20053174

His publication list is also highly cited:
https://mayoclinic.pure.elsevier.com/en/persons/hartzell-v-schaff



While listening keep in mind the following:

• you have already had one surgery now, so you are not in the same position you were last time.
• you have already experienced that the assurances you were given last time have not panned out (had they you would not be shocked that the valve you have failed). Myself I was never told that my valve repair operation or my homograft operation would be a cure, meaning I was told that I would require future surgery, it was a matter of when not if.
• you have heard now about scar tissue and how it complicates things in future surgery, it will not be lessened after this surgery, indeed it will be further complicated.

These are among the points (you will have your own set) which you should now consider while making your decision.

I urge you to get second opinions, for all good planning starts with examining the options first. This will always be a compromise decision, you will have to trade off X for Y. It has been stated before that we exchange valvular heart disease for prosthetic valve disease. Each type of prosthetic valve comes with its management issues. On is managed by surgery, the other by medication.

Lastly, this is always going to be your decision, it is really nothing to do with me in any more than I care about what happens to you. You alone can make that decision (which I always feel is a redundant thing to point out, because you are an independent adult)

I wish you peace in that process, peace to make a decision and confidence to treat it as the intellectual process it should be.

Best Wishes

 

[Kristine55]

First of all... thank you, thank you, thank you for all of the comments and recommendations that have been made here. I posted my response yesterday, but unfortunately, it didn't register here on the site. I'm amending that note slightly to hopefully post now. If my original post pops up after this, I apologize in advance for the duplication...

My responses first to LondonAndy and then skeptic49...

I definitely knew that with the tissue valve I'd need a replacement. That was a choice I carefully made in 2006. After weighing the options, I chose the bio valve knowing that I could live the lifestyle that my husband and I have. The idea of taking two baby aspirin a day -- the only medication I've taken in 12 great years -- was very attractive. I literally never think of having a heart issue or replacement valve; after my surgery in '06 I was able to resume my life more fully and actively than before surgery. These 12 years have been fantastic... stress-free and maintenance-free. And with a possible 15-20 lifespan (after surgery at 43), the hope was that that valve could take me to a replacement around age 60... still relatively (!) young and in probable good physical condition.

A replacement didn't freak me out. It still doesn't. The abrupt change in my valve has.

I had no idea that the valve could go like this. My husband and I stay active (see the opening post) and I'm very in tune with my body. I feel great and have absolutely no symptoms. I'm diligent with my annual cardio visits, so I thought we could follow any deterioration or changes. I expected a gradual process; things would slow down after a protracted period (months? years?) and then I'd have the replacement. Honestly, given the studies, real-life examples and my physical condition, I thought the projections of 15-20 years were very realistic. But, as you know, sometimes life throws you a curveball! 72 hours after finding this out, it still seems surreal. So I'm here on VR.org, taking in all of this feedback and good information and getting ready for surgery soon.

Now, my response to skeptic49: in '06, I had the valve replaced and the ascending aortic aneurysm repaired; everything was done at the same time. That's why I'm also surprised -- my aorta is now again at 5.2. Unfortunately, that's all the information I have right now. I'll know more after my appointments this week with my cardiologist and a surgeon. But, you're right, Jim (aka skeptic49) -- the good news is that this can be fixed.

And so... I'm weighing my options now. While the initial recommendation is for the stented tissue valve, I'm looking at both mechanical and tissue options. A second surgery and valve at age 55 is obviously a little different than one at 60. A tissue valve now means I'm definitely looking at another replacement at some point. Soooo... I'm listening to all of the good voices here, as well as talking to varied medical professionals and folks with different valves. Information is power, right?!

If anyone has a surgeon that has good experience going through the chest to amend a

Freestyle bioprosthesis​

(of course, going through all that scar tissue to make it happen), I'm open for suggestions. We're here in Chicago and I'd prefer to do it here, but I could do it elsewhere.

Thanks, as always, to this wonderful, generous community.

Kristine

PS Hello to all my new friends who have posted... thanks again!


Kristine55
AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Northwestern Memorial Hospital, Chicago, IL
"In the Waiting Room", April 2018, age 55

 

[Warrick]

"Information is power, right?!"


Too right!!

 

[honeybunny]

Kristine, thanks for sharing your story. My tissue valve was "installed" in Sept. 2015. Like you, I've been presuming that changes would be gradual and that I would have advance warning of a second surgery. I am in a 5-year research study and so undergo an extensive echo each year paid for by the study. Now I will make sure to keep up that level of examination when the study is over. Wishing you the best in your decision, surgery, and recovery.

Hugs,
Michele

 

[epstns]

Hi, Kristine! Time sure files, doesn’t it? Back in 2006 when you had your surgery I was still in the waiting room. Now my valve is 7 years old and I’m another Northwestern Medical patient. My valve was done there by Dr. Patrick McCarthy. He is the surgeon that Ross Young credited with saving his life when he had his aneurysm repair. I’m pretty sure Dr. McCarthy is still there, so you might want to look him up.

As pellicle said, you have done this before and know the drill. Just have to do it all over again.

 

[Kristine55]

Well, I am back after good visits to my cardiologist and a cardiac surgeon. Two weeks later -- and over that initial shock -- I feel informed and much, much more settled. It's amazing what information and a plan of action can do for you.

Apparently, my major issue is not my valve. While I do have some valve regurgitation, it is mild and not an acute issue. The dilation of my aortic root is the problem that needs to be corrected. Right now it measures 5.3. (The aorta itself is in good shape, given the graft my surgeon did in '06.) The surgeon will remove the device (including the old valve) I had implanted 12 years ago and replace it with a brand new valve.

And so, again, I have the choice that I did twelve years ago... mechanical or tissue. As I mentioned in my earlier post, I am leaning toward a stented tissue valve. I've had a great life experience with the tissue valve I have now and hope to enjoy that same ease and freedom with my next valve. If that's what I choose, I would go in knowing, as I did twelve years ago, that I'll need another replacement at some point.

I've penciled in surgery for June 29th. Yes, I'm getting ready for the next go round!

Thanks again for all of your valuable input and words of wisdom. I am so grateful to have this community.

Kristine

Kristine55​

AVR May 2006, age 43​

Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair​

Northwestern Memorial Hospital, Chicago, IL​

"In the Waiting Room", April 2018, age 55​

 

[Superbob]

Kristine, I, too, am wishing you the best in your decision, surgery, and recovery. Keep do keep us posted. I'm sure you will receive a lot of support and ideas here.

I joined here back in 2005 when faced with an aortic aneurysm of 5.3 and a badly leaking aortic valve (congenital condition). I selected the very same replacement device you did: a Medtronic Freestyle Aortic Root Heart Valve. My surgeon left the decision up to me, and after a good deal of research I decided the Freestyle sounded promising for me. I had the surgery at age 63, and my echo tech and cardio say it's still working fine as I approach 77 and my valve/root 14 years of age. The unknown for me has always been: will I outlive this device (and so hopefully be a candidate for another), or will it outlive me? In recent years, I have naturally wondered: what are the signs to look for that the device might be failing? I suppose shortness of breath would be an obvious one, but I have been actually stepping up my exercise the past few years and so far so good. But as my great surgeon told me back in 2005, there are "no warranties" on valve devices, so I could get the same news on a future cardio visit that you did.

I think the world of my surgeon, Dr. Alan Speir of Inova Fairfax in Northern Virginia (the D.C. area). My cardiologist back then told me if I got to the hospital on surgery day and Dr. Speir had been called away, I should just go back home and reschedule for when he would be there --because he is the best at valve replacement. BTW, more recently he was the lead surgeon for Dick Cheney's heart transplant. So if you are considering other surgeons, you might put Alan Speir on your list.

Again, all best to you in your new journey. We will all be rooting for a successful climb over a new mountain and the resumption of a wonderful life.

Bob

 

[Superman]

But as my great surgeon told me back in 2005, there are "no warranties" on valve devices, .....

Wait.... what!?! I was told lifetime guarantee!!!