Surgery on April 1st

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Jamieann

Well-known member
Joined
Feb 6, 2016
Messages
50
Location
Arizona
Hi all! I've been lurking around here for a few months but this is my first post. It's been immensely helpful to read about everyone else's experiences.


I'm 27 years old and was born with a bicuspid aortic valve with mild aortic stenosis. I went in for my checkups with the cardiologist every few years but lived my life normally without surgery on the table (was told it would probably happen around 50 or 60). In October it had been about 3 years since my cardiologist visit so I decided to make an appt with a new cardiologist (having moved to a new state since my last appt). He is very thorough and experienced and ordered an echo and several MRIs to check for an aortic aneurysm.


At my follow up appt after all my testing I was told that unfortunately the time has now come for surgery, as my stenosis is now severe. Quite a shocker, definitely NOT something I was expecting to hear at all. My cardiologist also told me that I needed to seriously cut back on my high intensity workouts/running prior to surgery, so that's been hard to deal with.


Anyway, fast forward to now, have had multiple appointments with my surgeon, who is awesome, and have surgery scheduled for April 1st. I've come to terms with the fact that all of this is happening, but it just doesn't seem real. My husband and I are also still really on the fence about whether I should get a bovine valve or mechanical valve, due to the fact that we both really want kids.


I've been calm for the most part with these flashes of terror and panic. Did anyone else experience that before surgery? I have a low pain tolerance so am really nervous about that aspect as well as about recovery, and getting back to running/working out.
 
As someone told me when I made my "I'm about to have surgery and I'm freaked out" post, everyone here has had the poo scared out of them. That is totally normal. I was very chicken about physical pain, but everything turned out to be completely manageable and nothing was awful. If you have time, read some of the surgery experiences that people have posted in the Post-Surgery forum. The medical professionals have good drugs these days and a lot of knowledge of how to use them. You will be fine.

I think the hardest part of the whole experience, especially if you're young and healthy, is accepting how weak you'll be for how long, but that's just a matter of patience. Eventually you feel like yourself again and it's wonderful.
 
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Jamieann, do not worry about the pain right now, just do the things the surgeon and the cardio told you to do to get ready. And be sure to premed and go to the dentist before hand also, the sooner the better, to make sure you do not have infection or infalmation of the gums. Infection cam travel to the heart, causing encarditis. Just make sure you get all the bases covered for infection protection. Otherwise, relax, read a box, take a leisurely stroll around the block. Good luck and keep us posted. Hugs for today. :)
 
Hi Jamieann,

I dont run, but I ride a mountain bike 3-4 times per week. I had my AVR on June 20th, 2014. Like you, I was concerned about returning to normal but I got back on the bike for the first time at about 8 weeks. I was back to my pre-surgery riding at about 6 months....now, 20 months later, I am riding better than ever. 28 miles yesterday with lots of hills and climbing. As young as you are, you will get back to running before you know it. Just eat well (starting now) and follow the daily walking regiment your doctor gives you. Dont miss a day, even when you dont feel like it.

The pain will definitely be there, but it is not consuming...unless you cough or sneeze within the first couple weeks.

I found that, after anticipating this surgery my entire life, turning to the excitement of getting it behind me and being "fixed" put the anxiety completely out of mind.
 
Hi, Jamieann!

You're young. That will make a huge difference in your recovery. Ryan's post should give you some idea of how most of us heal and rehabilitate. I am (I think) quite a bit older than Ryan, having had my surgery at age 63. I also had a complicated stay in the hospital and a bumpy recovery. Even after all that, by the time I finished my cardiac rehab at about 6 months post-op, nobody would believe that I had recently had open heart surgery. I'd estimate that by 3 months out, I was back to only about 50% of "normal" activity. By 6 months, I was at 80-90%. And that was for an older patient and after a nasty recovery. You should do much better, being so much younger than I.

The others are right about pain management. The medical technology is so advanced these days that there is little reason for a patient to be worried about pain. Just be very open, speaking with your care team about how you feel, how much pain you experience, under what conditions, etc. My biggest pain concern once I got home was from the fluid buildup in my lungs. Not every patient has this, and mine was easily dealt with via oral meds. In the hospital, pain really was not an issue, as they watched my meds closely. Once I got home, I had oral pain meds, but only needed half the prescribed dosage. We're all different, but almost all of us have much less pain than we thought we would.

As for valve choice, I'm not a doctor, but if you are thinking about having a family in the future, they will probably offer a tissue valve (bovine or porcine are the common ones). These valves are well-developed, but no matter how good they are, at your age, you will need another replacement in the not too distant future. Some surgeons recommend that women planning to have families should have tissue valves first, have their children, then have a mechanical valve for long valve life after that. It makes sense to me, but that's just me. You are you. You and your spouse need to make that choice for yourself.

If you're worried about warfarin/Coumadin for the future, I suggest that you read some of the postings of pellicle and Dick0236, among others, as we have many members who have used warfarin for much of their lives and they can tell you first-hand what impact it had (or did not have) on them.

As I've suggested to so many others here, in order to reduce your anxiety level, I recommend that you sit down and develop your plan for valve replacement(s), identifying and making each of the major decisions in advance. Determine who will be your cardio, try to identify your surgeon, the hospital, and preliminarily, what sort of valve you want. Once you have this all on paper, all you have to do is "work the plan." Of course, this isn't as easy as packing for a vacation, but you may be surprised at how much it can reduce your anxiety level once you've made all of the major decisions. Some of us even kept these plans in such detail as to eventually include all of the necessary doctor appointments, tests, pre-op procedures, etc.. That way, all we had to do was whatever was the next stop on the plan. Kind of like drawing a roadmap for that trip, which this most certainly will be.

Hang in there! Remember, you are one of the lucky ones who has a heart condition, but whose condition is being carefully watched and treated. It would be much worse to have this condition and not know until it was too late. . .
 
You might also consider a quick consult visit with a perinatalogist (OB-GYN specialist) to learn about how they'd manage your pregnancy with each valve choice and their advice. Your cardiologist would be a good person to get a recommendation from or to ask whether they think that'd be helpful. Had my kids before or "during" finding out I had heart issues so I didn't have this option. I have heard that some people on this board have had a successful pregnancy with a mech valve but that's all I know about it. Tissue seems to be easier for them to work with but then as Steve said, guaranteed re-op. I wish you the best!!
 

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