I'm 25 years old and I was born with aortic stenosis. My symptoms went from bad to worse in a month's time and now I'm having an emergency/urgent valve replacement surgery Monday morning. They're replacing my human aortic valve with a cow valve. Ask me anything!

Proof: http://imgur.com/a/tBlVD (They wrote 6/23 on the paper because my pre-op was yesterday, but you can see further down where it says to stop doing things Sunday night.)

*Edit: Wow, I really didn't expect this to take off! Thanks so much to everyone for all of the good questions and well wishes. I'm headed offline now since I have to pack and finish a few last minute around-the-house chores before surgery, and I'm headed into Boston tomorrow for the surgery... will try to provide an update after the surgery when I'm recovering!

Comments: 450 • Responses: 28  • Date: 

can_NOT_drive_SOUTH382 karma

Is eating beef after the surgery a form of cannibalism?

hrhashley215 karma

I hope not. I told my mom to sneak a burger into my room towards the end of the week!

QuickAGiantRabbit62 karma

Please don't eat any foods if your doctors advise you not to. There is likely a reason behind it.

hrhashley118 karma

I won't, I promise. My mom didn't think I was being very funny when I asked her to sneak me in a burger so soon after surgery. :) Just a little humor for my sanity!

Obi_Sean_Kenobi137 karma

Congrats first of all! I'm glad you're getting the surgery you need. My question is how do you feel having an animal part put in instead of something man made? Good luck! Hope all goes well.

hrhashley213 karma

Thank you so much for the congrats! Honestly, I think it's awesome. Some people ask me if it feels weird to me but 50 or 100 years ago at this time there wasn't really a high success rate for people with my condition in need of valve replacements, much less with an animal part! And best of all, my surgeon said that they'll be able to replace the cow valve in the future without invasive surgery. Technology's just getting better and better and giving people like me the opportunity to live long, healthy lives, so I think it's awesome.

And I'm very thankful for the cow.

longtimegoneMTGO78 karma

my surgeon said that they'll be able to replace the cow valve in the future without invasive surgery.

Wait, what?

Are they putting in a zipper?

hrhashley91 karma

Haha! That would be freaky. Actually, the surgeon said that in the future when it has to be replaced, they can go in through a vein (or maybe an artery, I'm not a medical professional) in your leg that leads up to your heart and just replace it that way. He didn't go heavy on the details because that's 10 or 15 years into the future for me and we're focused on this surgery for now, but the fact that they can do that is so nifty. Maybe in 10 years they can do it through laser surgery, who knows!

PCBcombr7 karma

What'd be something man made?

hrhashley22 karma

For the valve? There is a mechanical option that is man made. However, there are greater risks associated with the mechanical valve, so my surgeons and I decided the animal valve would be the best option for me! With the mechanical valve, because it's not tissue-based, it lasts a lot longer in your body (30+ years) but you'd have to be on blood thinners for the rest of your life, which I wasn't a big fan of!

PCBcombr10 karma

Ah, right. Also, how long does the cow valve will last in your body? After that time, will you need to do another surgery?

hrhashley20 karma

Surgeon says 10 years or so, but my uncle had the procedure done and he's going on 15 with the same ol' valve they put him in. But after the valve starts to deteriorate/fail, they just go in and replace it again!

DukeAlegon26 karma

How do they know when it's about to fail? Would a regular ultrasound suffice? Or do you wake up one day and realize "oh shit, my bit of cow has been put to pasture"?

hrhashley19 karma

Haha, can I use that exact statement 10 years from now in the future when I need to have another surgery? But also: I think they'll basically just monitor it the same way they've been monitoring my own valve for 25 years, by looking at imaging and asking me how I'm feeling physically! They do regular echocardiograms and EKGs (and the occasional stress test) and they combine that kind of imaging with how you're feeling. 10 years from now, if it looks like the valve is failing on imaging and I'm suddenly out of breath and have chest pain again, it's a good sign it'll have to be replaced. But technology is so good they'll hopefully be able to tell when it has to be replaced again before I start having the same symptoms I have now.

specter49110 karma

More recent studies have shown that that biological valves (like pig valves) can definitely last longer than 10 years. Some last 15-20 years.
Source: in medical school

hrhashley8 karma

Ooh, also good to know! Thank you for that. I wasn't looking forward to having another surgery every 10 years like clockwork, but that makes me feel a little more hopeful about the longevity.

Hope all is well going good in med school.

Capt_Gingerbeard80 karma

Can I use Cow Valve as the title of my next album?

hrhashley94 karma

Can I get a signed copy?

beartorus67 karma

Do you feel moo-ved by what the future holds for you?

hrhashley63 karma

Very moo-tivated if I do say so myself :)

otabagel52 karma

Are you going to adopt the catch phrase, "Here's the beef!" when you enter rooms now?

hrhashley36 karma

Man, I wish I could get away with pulling that off.

tinderthrowaway198436 karma

How long is the cow valve supposed to last, if it's not a permanent replacement? Do you reckon you'll get it renewed with another cow valve?

hrhashley59 karma

Surgeon says about 10 years, everything I've read online says between 10 and 15. Shooting for 15! But since I'm only 25, he did mention that I'll have to have it replaced a few more times in my life. I'm a big fan of cows now, so I think I'd opt for the cow option again in the future if I was given the choice. :)

gavinagoodtim335 karma

Is there worry of rejection from the body?

hrhashley47 karma

As far as I know, no! I spoke with my surgeon yesterday and the biggest risk is infection/blood clotting. I will probably have to be on blood thinner in the hospital to avoid clots, but I don't think rejection is a risk with this procedure as it would be with say, a lung or full-on heart transplant. Thankfully.

BuffyTheMoronSlayer21 karma

Have you talked to your Dr about cardiac rehab yet? Makes a huge difference in recovery. My husband had his replaced about 10 years ago.

hrhashley20 karma

I did briefly mention it to my cardiologist but I'm not sure if my insurance will cover rehab. It was a fight for them to approve the surgery I needed because it was on short notice - but I'm definitely going to try to get into cardiac rehab. Hope your husband is doing well!

gloomboom20 karma

Hi! I'm in the same position as you, well almost. I'm also a female born with aortic stenosis, but my condition hasn't worsened since the last surgery, about 12 years ago.

My question is, how did you afford to pay for the surgery? I'm from America so medical bills are no joke

I was lucky that I didn't have to pay for my previous 2 surgwries, since I was a low-income child and there are a bunch of charities for that sort of thing. But now that I'm almost 18, I'm seriously worried about being able to afford future doctor visits and surgeries.

hrhashley16 karma

Wow, hi there! I've never met anyone else with my condition at my age - I've seen kids in my hospital (since it's a children's hospital with an adult congenital heart disease program) with my condition but never anyone my own age.

I honestly don't know yet. I have pretty decent insurance and I'm lucky for that, but I'm sure I'll still get a pretty thick medical bill after all is said and done. I'm focusing on getting the surgery I need now, and then I'll worry about the finances later. I'm in the U.S. too, so I know the health insurance struggle! I'm always worried about being to afford surgeries and cardiologist appointments, but I've been lucky that my cardiologist and surgeons have always advocated strongly on my behalf when it comes to insurance woes.

Anyway, best of luck to you! My condition was stable for about 8 years before it suddenly started deteriorating on me again, so I hope you get to hold out with your own valve as long as possible.

normieeesgetout15 karma

Why didnt you use a porcine valve I heard those are easier to transplant ?

hrhashley19 karma

I've heard that too, and I'm actually not entirely sure about the reason "why" - I didn't get to choose the specific tissue valve. I just told my surgeon that I wanted a tissue valve and not a mechanical one and the surgeon told me that he thought the one made from cow tissue would be a better fit for my situation (possibly because of all of my scar tissue and other problems from past attempts at repairing the valve? I'm not sure).

FusionGel17 karma

Bovine heart valves have slightly better hemodynamics compared to their porcine counterpart. Their are a few science journals on the subject. I'm sure they both function adequately from a biomaterial standpoint...both materials being biocompatible and everything. I guess the edge toward bovine is a matter of biomechanics. I don't don't...maybe your physician is Muslim and can't touch pork or something. Best of luck with your surgery.

hrhashley8 karma

Wow, I didn't know that! Thanks for that information. Personally, they could put a dog valve in me for all I care, as long as it functions better than the one I have now does I'm all for it! But it's really cool to know some of the science behind it -- thank you for that insight. And for the luck. :)

suiitopii8 karma

By the sounds of it your condition appeared pretty suddenly. In retrospect, did you have any other symptoms in the past that were related to this condition, or was it all totally out of the blue?

hrhashley10 karma

I was actually born with aortic stenosis, which is the cause of this surgery, so it was a congenital problem. However, it was pretty stable for the past 8 years or so since the last repair they did, so I didn't think much of it, but it just got dramatically worse over the past month. Maybe I had the occasional chest pain or shortness of breath and didn't pay any attention to it, but this past month has just been hell. The symptoms came on pretty sudden in my case, unfortunately.

IronMyrs7 karma

I know you aren't a medical professional, but why a cow? If it's gonna be an animal valve, shouldn't pigs be more biocompatible?

geofbrown11 karma

Tissue heart valves are made out of both porcine and bovine tissue. My knowledge on this is about 10 years old, but I used to work for St. Jude Medical. SJM made/makes a valve using porcine valve leaflets, partly out of a desire to use a tissue that's designed to flap open and shut thousands of times a day for decades, and partly because using actual leaflets made for a better seal between heartbeats. Most other valves are made from bovine pericardium (tissue that holds a sac of fluid around the heart, not the heart itself). Those valves seal slightly differently between beats. Both tissues go through a chemical process that removes most of the things that might trigger rejection. At any rate, surgically placed valves where they actually open the chest to make the implant are a fairly mature technology with very similar outcomes across the board--my guess is the surgeon chose a valve that is available in the appropriate size for OP, and then let intangibles like ease of implantation drive choices from there.

Still in the process of development are valves delivered via catheter--most of the big players have ones for the aortic valve, a few also have them for the pulmonary valve. But size is a constraint, anatomy (like vessel size/tortuousity leading to the heart from (usually) the groin) has an impact, and there is an increased risk for patients to need a permanent pacemaker post-implant. I'll be interested to see what happens in the next 10 years--stem-cells sprayed onto a 3D-printed matrix may essentially allow implantation of a valve that is essentially a clone of your original before it started to malfunction.

OH, and OP--you may wind up on blood thinners anyway. The dirty little secret of tissue valves is that something like 40% (don't quote me, it's been a long time) of all tissue valve patients wind up on blood thinners for life. If that happens, don't worry too much--it's a pain in the ass but totally doable. Best of luck!

hrhashley8 karma

Also thank you for the summary! I didn't know much of the science behind it myself, and the surgeon explained it as best as he could, but it's really nice to have all of that information.

And aw, darn. I thought I'd avoid the trap of long-time blood thinners with the tissue valve, but I won't be freaked out now if they tell me that I end up needing them anyway. Clotting is a huge fear of mine, basically, but I'll do whatever I have to do at this point. Thank you so much for the luck & all of that great info. :)

hrhashley8 karma

I think I answered this sorta' already, so sorry for rehashing a different answer, but I honestly don't know. I didn't even know cow tissue was an option until my pre-op yesterday. I just told my surgeon that I strongly preferred the tissue/animal valve instead of the mechanical one, and he basically said: "Good, so do I. This is what I have planned." and he sounded confident so that was enough for me!

PM_free_rp6 karma

What are the chances of you not surviving the surgery?

hrhashley11 karma

Hopefully not that high! The surgeon didn't really dwell on the risks since he seems very hopeful in the success of the surgery; I'm going to a hospital that specializes in adults with congenital heart diseases/problems, so that helps, too. He did mention that there is a risk like there is with anything else, but he didn't stress it or anything. And I didn't push it. So I'm just hopeful for a speedy recovery.

Exedrn5 karma

CHB is a great hospital. I'm a nurse and see their patients at home. You're in good hands. Hoping you have a speedy recovery (and get one of the rooms with a good view).

Do you have good veins?

hrhashley3 karma

Thank you! I love CHB and I've been going there since I was a baby. I'm very thankful that they have a program for their children-to-adult patients with congenital heart problems.

Sadly, no. :( I always warn my nurses because my veins are tricky. They usually need to use my hands for IVs because they can never get one in my arm.

GrizzlyBeardAttack5 karma

I have the exact same condition! I've never met anyone else with Aortic valve stenosis before.

First question, when did you discover that you had this condition?

Is this your first valve replacement?

I've had 2 so far (one at age 4 and one at age 14) and on track to having another one in the next two or three years (I'm 23 now and I've been told they're good for 10-15 years before they succumb to wear and tear and require a replacement). My second replacement was with a bovine grafted valve as well. I like to tell people "mess with the bull, you get the horns" while pointing to my heart.

Are you nervous about the procedure at all?

The worst part of it for me was the god awful soreness that you'll experience for a few months. Pro tip: don't watch comedy movies during your first few weeks of recovery, laughing HURTS (14 year old me found this out the hard way after watching step brother for the first time 1 week after returning from the hospital). Beyond the soreness it isn't all that bad and it'll be beyond worth it once you've healed. You'll have so much more energy and begin to feel stronger almost immediately. Best of luck to you!

hrhashley2 karma

Hi there! Meeting a bunch of fellow aortic stenosis-ers through this, which is awesome.

They discovered I had the condition as soon as I was born. I was born 3 months premature and had to be life-flighted to Boston where they did an emergency repair surgery when I was like, a day old, just to stabilize everything. Since then, I've only had a few attempts at repairs that have prolonged the life of my original valve, but they can't do anything else for it so they're finally replacing it now since my symptoms have gotten so worse so fast.

It's good to hear from someone my age who has had the procedure! I'm more nervous about the recovery afterwards than I am about the procedure itself. My surgeon is very confident and made me feel very comfortable and at ease about the procedure itself, but my biggest fears are what will happen when I'm out of the hospital and at home. But I am excited to feel like a somewhat normal human again, and I'll keep in mind not to laugh too much! My aunt got me a huge stuffed animal which I've been told is good to press against my chest whenever I have to cough or sneeze, but I'll add laughing to that list.

Hope you've been doing well!

HandRailSuicide14 karma

How many second graders do you think you could wade through before you'd be overtaken?

hrhashley3 karma

One? One and a half? Fun fact: I was an elementary education major in college for like, a day, before I had to actually sit in and observe a classroom... kids are no joke. I have incredible respect for all teachers because I could never do it!

Basdad2 karma

My best wishes for a speedy recovery to you. This surgery is for the surgeon, a piece of cake, you will do just fine I am guessing that your symptoms accelerated rapidly during the past month, moving you from moderate A.S. to severe?

hrhashley2 karma

Thank you so much. And yes, that's what happened. My A.S. has been at the upper-end of moderate for a few years now but, because it wasn't impacting my day to day life and I wasn't experiencing symptoms, my cardiologist wasn't worried and just kept monitoring me. It just seemed to switch to moderate to severe so quickly (my aortic valve gradient is almost 100 from the echocardiogram they took yesterday at the pre-op), but I could have been ignoring symptoms that I shouldn't have been ignoring for a little while.

ilovepowernapping2 karma

Do you know how long you're going to stay at the hospital after the surgery? Wish you all the best!

hrhashley3 karma

They said between 5-7 days, assuming there's no complications or other problems that come up! I'm hoping for 5.

spongue2 karma

Hi there, I was born with aortic stenosis as well, had an open heart surgery at age 15 which swapped my aortic and pulmonary valves. Then I had pulmonary stenosis, and 6 years ago I had a bovine valve put in via a catheter operation (melody valve). I've had a couple other catheter procedures, and endocarditis twice (bacterial infection in the heart).

Why can't they start with a non-invasive procedure right off the bat? I think they have ways to do the catheter procedure in the aortic position now. Not an ideal candidate? I know your scheduled surgery is really soon, but it seems worthwhile to make sure this is absolutely not an option. A 2nd opinion can be a good idea, if I've learned one thing you really have to research for yourself and not rely on what the doctors say is necessary, unfortunately.

Are they putting the new valve directly in the aortic position, or doing a Ross procedure to put the pulmonary valve there, like I had?

Interesting that your symptoms escalated so quickly; can I ask what the symptoms were like?

Good luck! And feel free to message me if you want to chat with someone who's been there.

hrhashley1 karma

Hi there, so cool to hear from other people that have the same condition! So glad you're doing well (I assume) after your procedures.

I have a ton of built up scar tissue and a few other funky things in my heart (I don't know what it is, technically, but my surgeon mentioned that when he goes in he has to scrape off excess something from my heart --- excess tissue? muscle? something) but because of all of that I was not a candidate for the minimally invasive procedure at this time. He did say that when the valve has to eventually be replaced, however, it'll be done without invasive surgery.

They're putting the new valve directly in the aortic position, I believe, as the Ross procedure was not at all mentioned. And thank you! I may take you up on that opportunity to message you in the coming weeks.

Also, as for my symptoms: I was ignoring the "little" symptoms for a while. The gradient of my aortic valve is almost 100 now, and about a month ago I just stopped being able to lay flat (I couldn't breathe at all), I started getting light-headed walking up and down stairs, and I've had pretty much constant angina/pressure in my chest for weeks now. Just a total over-all feeling of "not well," but looking back, I felt little things here and there that I probably should have mentioned before it escalated. Ah well, looking to the future now!

ne7minder1 karma

What does it feel like? What are the symptoms?

Wish you the best, I have been through a ton of medical crap and I know it can be a chore so I hope you have a great recovery.

hrhashley12 karma

Thank you so much - hoping you're doing okay medically too.

Symptoms wise, I hadn't felt much of anything until last month. I was born with this problem, so I guess growing up, I've always felt like I was normal because I've never known what "normal" felt like. However, this past month, I started developing a lot of angina (chest pain). I didn't think much of it at first, and then a few days later, there was a heavy and constant pressure in my chest and I could no longer lay flat in bed. I had to start sleeping with 5 pillows just to breathe properly. The chest pain and pressure just kept getting worse, and I was getting short of breath and light-headed just walking down the stairs. After a few ER visits and appointments with my cardiologist, we found out that my condition went from "moderate" to "severe" and if I didn't have the valve replaced ASAP, I would be at extremely high risk for heart failure or a heart attack. Thankfully, my cardiologist is an awesome dude, and he got me in for heart surgery within 2 weeks.