AVR 12/13, could use some encouraging words

[natedrums]

Very thankful again for this community. Can't find much info posted from many people having surgery while still relatively young (I'm 26). I know I'm in the very-young category for needing to get AVR done, and I'm sure I should count myself fortunate for being in excellent health otherwise--in fact just in the last several months I got back into biking/not eating terribly and lost about 40 pounds.

Went in for pre-admission today, and for the first time I'm pretty scared. Before today, I was more anxious about the long recovery, not being able to play (I'm a freelance musician, and I'm keeping a tally of the substantial money I'm losing out on during recovery, as if it were more important than my health!), being unable to prepare for auditions and the performances I do have scheduled starting around March (rehearsals Feb.). Now I'm vividly remembering how terrified I was before my valvuloplasty this year, getting anesthetized and painfully poked for IVs, and that's a much less-big deal than full on OHS. I'm happy to see so many people just don't remember anything past the holding room, but it's not helping so much with my anxiety. Speaking of which, I'm getting back on my anti-anxiety meds today. Don't know why in the hell I ever got off them--I couldn't have picked a worse time.

Less than 2 weeks away and I'm still not sure of what kind of valve to get. Leaning towards tissue (homograft)--with the recent approval of percutaneous valves (albeit not for all of us yet), it does seem like a second OHS is much less likely...Also less risk of bleeding if I break something...I'm not and never have been into extreme sports, but there's so much that I want to try now since I never have had the chance. At 26 I don't want to have to put a cap on what I can and can't do by myself for the rest of my life. I would like to skydive, learn to ski, all stuff I imagine I'd be at risk for with coumadin...Not to mention, if anyone read my only other post, tissue is likely the only way I'd ever be able to do basic training (for a position in a high-level military band, one of which I already won an audition for last summer, only to find out I was medically disqualified), if I could ever be approved for it. A resident working with my soon-to-be-surgeon used to work in MEPS (military medicine) and seems to think I'd never be approved, even though I'm going to be so much healthier after the surgery than I am now. I can't overstate how crushed I would be if that were the case, but that's for a different forum.

Anyway, if you skip just this last paragraph, the gist: Yesterday I wasn't scared, now I am. If anyone could reassure me a nurse is not going to give me the wrong medication and kill me (this happened to the father of a friend), or has any other encouraging words, it would be much appreciated!

Best-
Nate

 

[bradvo]

Hey Nate, I'm almost 4 weeks post op now and I can relate to all your fears. The wait is the worst, my surgeon made me feel better
with his confidence that I would feel even better with my new valve. I think he will be right, the stronger I get I notice much energy.
I agree with the anxiety meds as well, wish I had had them.
Look at things positive and keep it that way, try not to over think this or all the negative what if's. It aint gonna happen !!
take care
Brad

 

[Bill B]

Recovery isn't a walk in the park (although that will help), but I can tell you that even though I was 61 at the time of surgery, within 2 months I was back working on cars, and I mean working hard. All kinds of arduous repairs working 8-10 hours straight. I'm not trying to sound heroic. People recover at different rates, but I think you have every reason to expect you'll be making those rehearsals and auditions in February and March. Like you said - you're very young and healthy. That helps a lot. I had a bad week or two post-op, but I regained strength quickly after that. I entered cardiac rehab at 6 weeks and that really helped. But even prior to that I was feeling well, driving and doing everything but lifting heavy weights. And don't worry much about the surgery, if you are. It's essentially routine now and remarkably successful. Also, you will get highly specialized care. You will spend the first night in the ICU with 1-on-1 coverage by the most skilled nurses you will ever meet. Then you will go to cardiac step down, where, again, you have specially trained staff and careful monitoring. You should be discharged from there in 5-7 days or less.

Expect to do well. You almost certainly will.

 

[Fundy]

Nate, if things go well; you may be able to play a lot sooner than you think. I'm two weeks post op myself and feeling well. I'm sure drum playing is something I could do that wouldn't hurt sternum healing.

I think most cardiologists and surgeons would be recommending mechanical valve at your age. I work in a job where I might get cut every day and surgeon said warfarin bleeding issues wouldn't be a big deal. At most a cut that bled for two minutes would bleed for five. At 45 I choose tissue though a month before op, when for past three years I was 100% sure of going mechanical. On the bright side, all the choices are good ones; they all save your life. You might get seventy more years of guitar playing instead of just one or two.

I don't think either tissue or mechanical would prevent you from skydiving. Maybe a fearful dropzone operator might, but where would you find one of those. I did 50 skydives about 15 years ago and plan to do a few more someday myself, even if I had of gone with mechanical valve.

It might seem strange to most, but I'm actually enjoying the experience. My terror levels were way more higher for teeth cleanings and needles than for the heart surgery. I guess I just accepted that I was doing it, and most of the hard part i would be unconsciuos for anyway. So there really wasn't much i was worrried about. It wasn't all fun and games though. But for me it wasn't that bad.

 

[Julian]

Don't be afraid, well at least I wasn't afraid because I knew I had a purpose on the planet still. Had my surgery 4 months ago, went mechanical because I want to minimize the risk of ANY further tinkering with the heart. BTW I'm 28 years old. Talking to some younger people that had this surgery I've found that mentally it has the potential of being tougher to recover and accept because of obvious reasons. Everyone in my rehab class is at least twice my age, they all are retired have grand kids and have been there done that. Theirs minds and bodies are much more seasoned in general. Most of my medical team agreed with my cardiologist that the under 30's crowed that have had valve surgery felt more pain mentally and physically in recovery. By no means am I'm trying scare you or take away from the suffering rights for our older OHS community but according to my medical team in and out of the hospital its was a matter of fact and not opinion. I didn't consider it until they started to break it down for me as to why recovery and adjusting to the new normal after surgery can be harder for young people. Either way we are all truly given a seconds chance at life and even though I'm on coumadin and ended up with a pacemaker I don't feel like I'm limited from doing some extreme activities. After going through the surgery I'm glad the odds of a repeat surgery are in my favor, I personally would not want to go through it ever again. Some people have glorious text book recoveries and some don't in all ages, from my experience I personally that it was going to be easier, but it has turned out to be one of the most difficult challenges in my life. In the end it still beats the alternative. Please keep us updated.

 

[Bill B]

And as to restrictions on activity... My surgeon said I would have none at all (after a recovery period) despite my mech valve, serious aorta repair and warfarin. I race cars in road races at speeds approaching 200 MPH and have never been denied entry on medical grounds even though my doctor reveals my condition and meds on the entry forms. I think what you do and how you approach life after this surgery is largely up to you. I can understand the military deeming you medically ineligible if you had a diseased valve. The military denied me when I was a kid because I had migraine headaches, which actually were rather mild. I'm not sure how they will react after your surgery, but for nearly anything I can think of the valve and warfarin should not make any difference.

 

[Julian]

Oh and I just wanted to say that I can't stand auto correct on my phone, as you can tell by my previous post. Grrr.... I need a new phone.

 

[LJM]

HI Nate,

I had my 1st surgery at 7 years old. I am now 40 & 5 weeks ago underwent my 4th OHS (all for different reasons) But i am now feeling better, You will be fine & back to playing music before you know it.
Good Luck with your up coming surgery

 

[Mentu]

Nate, many if not most of us build up a host of anxieties about how our life after surgery will be. I live alone and worried that I would be unable to live by myself for a while. As it turned out, I was fixing breakfast on my second day home and found that I was not an invalid and could even begin doing light chores. Think about your recovery as something that you must manage. Taking active control of your recovery will help you regain confidence more quickly while helping you heal more successfully. Commit yourself to your recovery and that also means not injuring yourself by doing things too early. Some things you must ease yourself back into. One of those things may be music since repetitive motions can cause the chest muscles to heal less quickly. I am also an advocate for Cardiac Rehab because it provides some structure that helps shape your recovery in a very positive way. You are likely to find that by February you will not be back to 100% of your former activity level but that will continue to improve with every week. Most of us are very active by the end of the third month. Going into surgery as a younger person in otherwise good health will help make your recovery a better time in your life than you may now imagine.

Larry
Tulsa, OK

 

[Lynlw]

Hi Nate, I remember when you were here in the summer, probably because you are close in age to my son. I'm sorry to hear you needed surgery much sooner than you had hoped, but hopefully having it now might help in getting cleared for your dream career playng drums in the military.
As for valve choice, as you know at your age for the valve you need most would reccomend a mechanical valve, but as you've said having a tissue valve MIGHT make it easier to be cleared for basic training, I'm fairly sure coumadin would denfinately rule that out. Chances are pretty good at your age, if you got a tissue valve you could be med free after the initial recovery period. Altho at your age even with percutaneous valve replacements, IF you chose tissue valve now, I would definately planning on needing at least 1 more OHS before you died at a very old age of 90+

As for your fears, both for surgery and recovery. I think it is a good idea to start your anxiety meds again, many people who never needed them before find it helps before surgery. I do think and so does Justin, that having a good attitude going into surgery AND having confidence you picked the best surgeons to "let" them operate on you as well as believing the rest of the staff is very good, helps alot -that and knowing if you work as hard as you can and do everything possible to make your recovery as good as possible helps. I'm not saying over do and cause setbacks, but when you are in the hospital, do the breathing excercises every hour or so and once you can walk, walk as often as you can, even if it is just short distances the first day, soon you'll be able to do laps around the floor and rest when you need it. HE beieve for him doing those things play apart in being able to get home relatively quickly.. Pretty much from the time he finds out he needs surgery, his plan is to do everything HE can to get back to 'living his life' ASAP, so when he is home beside doing a couple walks a day (increasing distance as he can) and working on his breathing, even tho he hates having restrictions and weight limits, he sticks to them and asks for help, so he doesn't mess things up.

As for younger people having more pain, that is true BUt even then, i hope it helps that justin has said his sternum, incisions never were very painful,more sore and uncomfortable type thing. He said at the time he broke his arm ad needed surgery on that that that was more painful than his heart surgeries, we thought maybe it just seemed that way at the time but when he had OHS after his broken arm he said, yes the arm WAS more painful. For his heart surgeries, for the most part it is mainly sore muscles, in his back and neck and the incisions itself usually does really hurt. Of course everyone is different.

But I would think barring any complications, your schedual for being able to perform in march is very doable. One of Justin's heart surgeries was in Dec and he was able to play baseball (catcher) that march when practices started.

 

[DanielB]

Nate, The time before was much worse for me than the time after has been. The mind can mind can imagine all sorts of things when given the time to do so. I also worried about having activities restricted beyond my comfort level, but that has not been the case (I am now coming up on seven weeks since AVR surgery). I was up and walked around the entire ICU floor the day after surgery and have been actively walking twice a day since my first week after surgery. At five weeks I was allowed to drive and a few days later I was moving my lawn with no issues. I now am walking over an hour a day and doing light workouts, incuding my upper body, and feel better every day. Not to say recovery has been a party, I would not want to go through the surgery again if I could avoid it, mostly because of the axiety it caused for those around me. That's why I chose and am very comfortable having a mechanical valve.

Hang in there and try to focus on the things that need to get sone before surgery and the preparation for the recovery and it will be here before you know it.

Best wishes,

Dan

 

[JeffF]

Nate, we have the same surgery date. We should talk sometime. I am going back and forth with valve selection (daily).

Jeff

 

[BillyG]

I am 49 years old and at 4 months post surgery as of today (Surgery August 2nd) I had some complications afterwards but they worked out ok. At 3 months past I was riding my bicycle. Still have a few little dizzy spells but they gotta play with your meds sometimes to see what works for you. Don't worry, you'll be OK!

 

[ocunurse]

Hi Nate,

I posted this afternoon, but my kindle fire wigged out! Just take a deep breathe, and try to relax, focus on other things like music, and keep in touch with your family and friends. Most families and friends who have not been in the situation are unsure of how to help, so it's important to try to keep the lines of communication up if you are comfortable with that.

Now I'm 24 years old, scheduled for my second OHS 12/19 in cleveland. I'm opting for the ON-X mechanical valve because my pig pericardial tissue lasted me only 7.5 years to fix my BAV. The anxiety may be killing you right now, but you ARE going to feel so much much better. Honestly, the first time, I did not really understand why I needed surgery. I was still active in sports and other things, then boom the doc says I need surgery. I can tell you I was lying to myself, because I felt 100% better, had more energy, could run further and longer. I could lift more, but it still wasn't very much LOL. The exciting part of this whole thing is that you will feel better. I know its hard to see, but there is a shimmer of the light at the end of this tunnel. The anxiety can mount though. Just yesterday, I thought I was going to pass out driving, so I pulled over and told my wife she was going to have to be my chauffeur for the next two weeks. Yeah it sucks, that i'm very symptomatic this time around, but I'm looking forward to waking up with my family by my side and working to get out of Cleveland. One step at a time. Focus on the positives. It will get better!

I wish you luck, peace of mind, and I'm available if you want to chat more!

 

[ElectLive]

Nate - Forgive me for details, but thought it might actually help...

Here's the worst part of my day of surgery: waking up early enough to arrive at 5:00 am, loss of some chest hair, a few needle pokes, no countdown before they put me to sleep, waking up briefly (less than a minute) after surgery in recovery with a tube in my mouth and in a "fog", waking up a few hours later in ICU with an overall body dull mild pain. Here's the best part of my day of surgery: no traffic prior to 5:00 am, no wait upon arrival, large quantities of medical professionals all attending to just me, a very reassuring explanation from the anesthesia guy why it was impossible I would wake up during the surgery, a very cool looking OR to check out just briefly (no countdown to sleep...argh), falling back to sleep in recovery just after realizing I had a tube in my mouth, waking up in ICU a few hours later, clear as a bell - no hangover and thinking to myself - "If I got run over by a truck, it sure was nicely padded!", less than an hour later seeing my family, including my 2 1/2 year old daughter, walk in, talking and joking with my daughter and telling her goodnight - only 4 hours after leaving the OR.

So, my point is, not much to fear. I had all the confidence in the world walking into the hospital that early morning, and it turned out I was right, it was no big deal all things considered. Now, things like eating, walking, and many of the other recovery items may be a bit of a challenge at first, a somewhat slow process compared to your life now. But the scary part is over then, you will have nothing but a return to normal to focus on then, and as you accomplish more each and every day, it will get easier.

Everyone's story and experience is different, some smooth and some bumpy. But more often than not, the general consensus is that it is not nearly as bad as you might imagine. Focus on what's in front of you, the valve decision and getting ready, then show up and let the experts do what they do best. The odds are overwhelmingly in your favor that everything will be just fine. Best wishes.

 

[dcc617]

Ya know....the BEST part of this board is seeing that this isn't a disease that only affects a certain age group. It's great to have everyone's support through the entire process.

Best of luck Nate!

 

[sarahsunshine]

Nate,

As Dave said, it's not an issues that affects only a particular age group. My step son had both his Mitral and Aortic valve replaced on Nov 28 (a week ago almost). He also had his ascending Aorta replaced with a Dacron Graft as it had ballooned out to 5cm. Pretty scary for a 70lb 12-year old.

In any case, I just thought I'd let you know that Skyler has been walking at pre-op pace since yesterday (that's 5 days post-surgery)! He gets tired easily, but when he is awake, you just can't slow him down. It's AMAZING how improved he is already. I never would have guessed it. I'm just wondering which sport he's going to want to play now, since he's never wanted to play sports before and couldn't run the length of half a soccer field without stopping.

The surgeon doing Skyler's surgery will not give young people the option of tissue vs. mechanical. He believes that the risks of reoperation are greater than the risks of warfarin. Further he uses the On-X valves and his hoping that the risks of warfarin will decrease with potential lower doses in the future as a result of some of the studies they are doing currently.

 

[Bina]

Hey Nate, I've put you on the VR calendar here, so there is no turning back now...Git 'er done !!

 

[Lynlw]

Nate, Since you mentiond how it is hard to find other people around your age having/had heart surgery Have you found the forums at the Adults with CHD org? http://www.achaheart.org/ It is a really great org that is very active, raising money and awareness for CHD etc and there are local groups that meet in person
Quite a few of the members had surgey in their 20s, usually it was their 2nd or 3rd.

 

[Wife of a ticker]

Hi Nate,
I hope that your surgery went well. My hubby was diagnosed at 27 accidentally and had surgery within 5 months from diagnosis. He had a mechanical valave because of his age and clearly, it's weird to get used to the new life on blood thinners but he managed it and is over 5 years post op now.

I hope that you are feeling good,

Holly x