Mid-Twenties Aortic Valve Replacement

[BostonJohn]

Hi everyone,

I am new to the forum, but I have found everything I have seen while browsing to be helpful. I am in my mid-twenties and just found out that I am going to need to have my aortic valve replaced. I have known about my bicuspid aortic valve for years, but thought I had much more time before surgery would be required, so this has come as quite a shock to me. I do not have a specific timeline for surgery, but I have met with a surgeon at Brigham and Women's in Boston, and recently had a CT Coronary Angiogram, besides my normal echocardiogram.

I feel like I am definitely on the young end of the spectrum of people going through this process, and I would love to hear the experiences of other people my age, specifically when it comes to valve choice. I am concerned with coumadin with a mechanical valve, because I am very active, and love camping, hiking, fishing, running, etc, and am constantly hurting myself, often in the middle of nowhere, and I am not willing to give up my hobbies yet. I am also very busy with full-time work and an evening MBA program, so constant testing and appointments worry me. Of course, the prospect of multiple surgeries after a tissue valve is not very comforting, either.

Additionally, I would love to hear about experiences at Brigham and Women's, especially anyone who had surgery performed by Dr. Aranki. Any other advice would also be appreciated.

Thank you,

-John

 

[Scotty]

Hey John,

I am in about the same boat you are. I am in my early-mid 20s and had my surgery 2 weeks ago. It came as a surprise as I only had 3 weeks of even knowing about the problem before I went through with surgery. I researched it as much as possible and chose the Edwards Perimount Magna Bovine Valve (its supposed to be top notch as far as tissue valves), because I don't like the idea of being restricted by Coumadin, but there are folks who swear its not bad at all and that they do not have any real restrictions. You may have to have a planned diet and see the doc more frequently, and they might tell you to avoid snowboarding or mountain biking or whatever. I also figure that in guys our age, we might have to have a mechanical replaced anyway, be it in 50 years or w/e. So we may be looking at at least one re-op either way. Granted with time surgical technology will get better, which is why I put my faith in a tissue valve, because I hope that if it lasts long enough, I can get it replaced by cath, or at the very least by then Ill be a little more settled down and a mechanical wont be so bad if I opt for that the second time around. Plus, if I get a mechanical at that point, it will be more likely to last me the rest of my life. A tissue valve at our age is an optimistic gamble, but for me it seemed like the right choice. But if you opt for tissue, just know that you will need another operation of some type in your life. And you cant be totally sure when. Both are a gamble and both have their advantages. I just saw the tissue as an acceptable risk.

 

[BostonJohn]

Thank you for the response. When did you have it done? I also meant to mention that I am a skier, and worry about injuries, and possible issues with altitude out west on coumadin- does anyone know more about this?

 

[Scotty]

Sorry I had to edit my comment. For some reason, it did not post all of it, so it will make more sense now. I actually live out west, and I dont think Coumadin has a different effect at high altitude, but that might be a question to swing by the cardio or surgeon.

 

[BostonJohn]

Thanks a lot for the response. I really appreciate hearing your story. How is your recovery coming? Was it a full sternotomy?

Best,

-John

 

[dick0236]

I feel like I am definitely on the young end of the spectrum of people going through this process, and I would love to hear the experiences of other people my age, specifically when it comes to valve choice. I am concerned with coumadin with a mechanical valve, because I am very active, and love camping, hiking, fishing, running, etc, and am constantly hurting myself, often in the middle of nowhere, and I am not willing to give up my hobbies yet. I am also very busy with full-time work and an evening MBA program, so constant testing and appointments worry me. Of course, the prospect of multiple surgeries after a tissue valve is not very comforting, either.
-John

Hi John, and welcome. You can get a lot of good infor from this forum.

I was a tad older than you(31) and had no choice of valve type (tissue valves where still on the "drawing board") when I had the surgery. I also like the same hobbies you have and have found warfarin no hindress in living my normal, active life. Just remember to take your warfarin on your fishing trips. I had my surgery about two months out of college and worked full time plus until I retired about 15 years ago. I also earned an MS and several professional certifications and ACT(anti-coagulation therapy) never interfered with my careers or professional education. My mechanical valve is now 45 years old and is expected to last the duration......so in hindsite, I am very glad I did not have to make the choice between mechanical vs tissue. Educate yourself on the pros and cons of each valve.....then make the decision that best suites you and your situation.

 

[spartangator]

Hi John,
Welcome to the forum.

As you're reading, a number of us are familiar with your situation in terms of being younger (30 for me), active, and pursuing educational/professional goals while sorting through challenges of heart surgery. Also, you've likely noticed that we're lucky to have multiple effective options.

That's part of the challenge, of course, that valve selection isn't exactly straightforward, but whatever you choose in consultation with your care team will work for you. You'll find a ton of useful information on here and supportive, kind people (Scotty and Dick as prime examples) to help sort through it.

The best advice I can offer is to keep learning about the options, read about people's experiences with different choices, and have frank conversations with your cardio and surgeon.

 

[Kristen]

Hi John,

I'm a 45 year old female who just had AVR and an aortic anuerysm repaired at Brigham and Women's Hospital May 30th with Dr. Prem Shakir. I found the hospital and Dr. Shakir to be fabulous. The rooms were big, bed comfortable (for a hospital) and the food was good. I had all great nurses, CNA's and a great experience all around.

I went with a mechanical valve because I didn't want to have to definately go through this surgery again. It's been almost four months and my coumadin has not been regulated yet, I do everything they tell me and I can't seem to get in range, so I'm not sure what's going on with that, but they don't seem to be too concerned, so I'm not either. It is kind of a pain to go once a week and have my blood drawn, but I found a lab really close to my house that hasn't been busy whenever I've gone. I have tried early morning (that is the busiest time) and late afternoon, the longest I've had to wait is one person in front of me. Eventually I will only have to go once a month for a blood test or even test at home. I did have one bout of Afib and that was two weeks after surgery and I spent five more days in the hospital only because I went to a hospital closer to my house and the admitting cardiologist wouldn't let me leave until my coumadin was within range. I sat there for five days with a haparin drip (IV_ and that was it, I felt perfectly fine and was bored out of my mind!! But I guess better to be safe than sorry. I have been in range one other time and that was two weeks ago! Now I'm low again, 1.8, and I'm suppose to be between 2.0 and 3.0.

Whatever valve you choose will be the right one for you. Don't second guess yourself, we all have our reasons for our choices. Do your research and decide what will work for you.

Two days after surgery I was not taking any pain pills and haven't felt like I needed even an aspirin, other than sneezing and coughing, that is a killer!! But I have to say even that is better than it was, just a little painful now. I am in cardiac rehab and doing fine with that. Once I am done with rehab I think life will be "normal" again. All in all I totally think the waiting for surgery was the hardest. I feel very lucky that the actual surgery for me was not bad at all, neither has the recovery been. I went back to work at eight weeks, I'm a physical therapist assistant, so it's not a desk job, and fortunately I haven't had any problems.

Good luck and keep us posted.

 

[Scotty]

Hey John,

Yeah it was a full sternotomy, the whole 9 yard, and recovery has gone really well and very fast. At our age the recovery is not as bad as with older people. The worst part of the whole thing is just the nerves on the days before. Once you just get it done, it just gets better. You'll bounce back quick!

 

[carolinemc]

BostonJohn, recovery depends on what has to be done. Aortic valve replacement can be just as hard on the young as it is on older patients, just depends on the other conditions, or the unexpected. I had my bypass and 38 and did well, healing time went as predicated. The sternum takes a complete year to heal. So, because I work on computer all day, on the keyboard, it took the year for the muscules to heal. But you will bounce back as quick or quicker, but let the sternum heal. Hugs for today.:smile2:

 

[BostonJohn]

Thanks for all of the information and encouragement everyone. I had a CT scan last week and I am still waiting to hear back from the surgeon to discuss a timeline.

 

[travis86]

Hi Guys

Sorry to hijack this thread. My name is Travis and I am a 33 year old male (newbie to the site) who has a bicuspid aortic valve and ascending aorta aneurysm > 5.0 in size. I have been told it is time to operate and I have done all the prep work (blood tests, chest x-rays, anesthetist appointments etc) it is just waiting for the call. I am struggling a little bit with the whole work/life balance at the moment. I am an operations manager at a recycling company and we are going through a massive growth stage. I am trying to balance that with the thought of going off work for a couple of months and making sure there is coverage for me as well as studying a management degree. How has everyone else managed? I also have my wife who will need to take time off from work and she can't plan anything at the moment either. My parents will come over and help but they live in a different state so they need to arrange different options. It is like our lives are on hold at the moment and we are just going through the motions so to speak.

Has anyone experience similar issues or feelings?

 

[Warfarinking]

I'm 24 right now but had my valve replaced at 22 and I can honestly say it's not all that bad...yes, I wish I didn't have to have had my aortic valve replaced but it's better than being dead right. You get used to taking coumadin and hearing the sound of your valve tick. Only downside is you're going to be controlled by a pill for the rest of your life.

 

[nngbwh]

Like a 5 star hotel at Brigham and Women's Hospital. Sexy and great nurses,:biggrin2: big private clean room, great food :thumbup:and most of all the best surgeon in the world Dr.Shekar.

 

[ski girl]

Hi Travis-

If you have a desk job you shouldn't need months off work, your brain will be quite functional! I had the week after the op (which was on a Friday) off and then went back part-time the following week as I was BORED. Three weeks post-op I was back full-time. The surgery knocks you around a fair bit which makes you more tired than usual, but that was about it (I was 39).

I also live by myself and I didn't need much help with anything. You can't drive for six weeks, make the bed for eight weeks, or vacuum for I think six weeks as well. Everything else you can either do just fine, or adapt a solution. My only 'Hmmmm' moment was after I did a load of washing, I couldn't figure out how to get the clothes out of the washing machine - until I remembered I had a set of bbq tongs so I used those.

Hopefully you (and BostonJohn!) find the first few weeks post-op as easy as I did!

 

[pgammo]

BostonJohn,

I had my surgery three months ago (age 25). My recovery has been miraculous. I slept on my bed the same day I was discharged, slept on my side a week post-op, and slept on my stomach 2 weeks post-op. 1 month post-op, I was playing flag football with my buddies (as a quarterback!). Since then, my life has been back to normal (literally). My kids jump on my chest, I'm out working everyday (carrying well over 50lbs), and overall, I am very happy. The only thing that sucks is having to take pills for the rest of your life, but you get used to it. God bless you and I hope you can find contentment through these testimonies!

 

[BostonJohn]

Thanks everyone for the encouraging responses. Apparently, I have an ascending aortic aneurysm of 4.5 cm. Based on some of the other posts I have read, it seems like it is not at all uncommon to have this fixed at the same time. Does it impact recovery time?

 

[UWMike]

Having the Bentall procedure (replacing the ascending aorta along with the valve itself) shouldn't affect your recovery at all. I just had mine done a week ago and my aneurysm was 4.3 cm. Just got home from hospital today so I was in for a total of 6 days. I asked this same question before and was told not to think of the graft as extra potential for trouble. They really are strong and should last you a lifetime even if the valve itself won't.

Back to your initial post though, I'm 22 and my roommate in the hospital who was having the same procedure done was 31. Both of us chose the mechanical valve for the express purpose of hoping to minimize the possibility for more surgery down the road. It really just comes down to weighing your lifestyle against the potential for more surgery. You may be one of the lucky ones and get a tissue valve that lasts 30 years and by that time its a safe bet that surgical procedures will have improved. Experiments with cath and otherwise "minimally-invasive" procedures are already being done, in some some cases at a fairly advanced stage. My surgeon offered to send me to a colleague at another hospital who was working with this since I asked the same question. But I opted to stick with the tried-and-true rib-spreader.

 

[ski girl]

John recovery time is for the sternum - get everything fixed at the same time!

 

[neil]

just wanted to say good luck john, and you will do just fine