AVR Scheduled for 8/25. Any advice, words of encouragement are welcomed!!

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L

LDM251

Member
Joined
Apr 22, 2014
Messages
16
Location
Austin, Texas
I had radiation treatment for Hodgkin's Disease when I was 16. Now, 30 years later, the damage from that radiation treatment is causing the need for my aortic valve to be replaced. Am I scared to death? Of course. Am I trying to stay positive? Yes. Is that harder some days than others? You bet it is. A friend's son died right after this surgery, so that does heighten some of my fears. I've done a lot of reading. I like to hear others' stories. I know recovery will be tough, so any advice or words of encouragement are very much welcomed. Would love to hear from any of you who've experienced this surgery or are close to someone who has. :)
 
It looks like we're the same age. Honestly, I think the waiting and worrying was worse than 95% of the recovery. The first week is tough - at least it was for me because I'd never been in a hospital before and it was kind of... unpleasant, I guess is how I would best describe it. The second week was kind of scary because you don't have nurses monitoring you 24 hours a day. By the third week, I could feel an improvement every week. I'm coming up on 8 weeks this Wednesday and I feel pretty normal! I went back to work last week (desk job).

My advice? Read other people's stories here so you know what to expect. That helped me not be afraid of things in the hospital.

Best of luck to you - you can do this! And best wishes for a "boring" recovery!
 
Hi LDM, Yes waiting for your day is the hardest part. A few days before you will do your pre op testing, a lot of information will come your way. Write down questions in case you have any, I am 49 and had my surgery 18 weeks ago. I went back to work full time at 12 weeks ( with a 15lb weight restriction). I had mine done at a very new Hospital with all state of the art equipment and the best doctor around, I hope you have great care, you have to feel confident about that first. I did have a visiting nurse come twice a week, for the first month- that was helpful. Rest and a balance diet is very important when you recover. Good Luck!!!!!
 
I had my surgery 7 years ago when I was 50. I was out of the hospital in 5 days. I started walking the floor of the hospital the very next day. I was back in my office working part-time in 4 weeks. By 8 weeks I was back to full time. At the 12 week point I got the ok to return to all activities. I couldn't wait to get back to horse riding--I compete in western riding. I was also back in the gym working with the weights.

My best advice; do not worry about what "might" happen. instead see yourself as want to and need to be. Visualize the positive.
 
You will read and see a ton of positive experiences here. It is extreemly scary. As far as myself, I was out of the hospital on my 6th day. Within two weeks I did a break job on my sons car. (I would not recommend that although I was fine). But I felt pretty good and restless. As long as you get up and move and work at getting better, you will be amazed at how fast you can recover. There are no guarantees and everyone has a different experience, but do what the doctors say. The waiting was the hard part. What made it better for me is my faith. I also made sure evertything was written down and what might have to be done. Told my wife and kids how much I loved them and I had more joy from them than most people get in a life time. I made peace with my maker and put it all in his hands. I found peace in that. You will be fine.
 
Stool softeners for postop recovery (and getting #2 going again) are recommended, I however really prefer KimChi. Do not discount this as being flippant.

Make sure you have a tablet / phone / pc with you which can connect to the internet and allow you to chat to friends

If its even slightly cool, take in a thin fleece throw-over blanket as for strange reasons I was just cold ever night while at the same time getting sweats (which made me colder when the AC evaporated it).

Do not eat toast or cookies or anything which risks causing your to cough. So stick to icecream, soups, meats and vegetables.

Best Wishes and go attem
 
I didn't get a chance to say a big thank you to all of you last night. I read each of your posts a couple of times, just letting it all sink in, and I appreciate you all so much! The countdown to surgery day is enough to drive a person bonkers. So many things to think about and plan for between work and home, with most of it hopefully being preparation for a non-eventful surgery and recovery. At times I have a very "so be it" attitude about it all, and have even participated in some joking about how eating bacon after this is over could create an inner conflict with my new pig valve body part. My thought is that if I can't laugh about this, I'll probably go nuts.

I think I've read just about everything on this site, but will probably re-read it 10 more times before the 25th gets here. If y'all think of anything else (yes, I said "y'all"...I'm from Texas), please feel free to share. Thanks again for the input!! - Liz
 
Liz, as others have said, waiting for the surgery date really was the worst part for me. I had no trouble coming off the vent and the surgery was relatively pain free. It does hurt to cough or sneeze afterwards but the pain level diminishes rapidly as each day passes. Make sure you get all the walking in that you directed to do post-surgery and make sure you weigh every day to check for fluid retention. I'd venture a guess that 95% of the forum members have been through valve replacement or valve repair and know what you're experiencing. All of us are here to support and encourage both new and old members. Let us know if you've got more questions. Mary
 
Ah yes, the sneeze. For six weeks I would pinch my nose closed whenever I felt one coming on. I managed not to sneeze the whole time, thanks to the warnings I had seen here. You can't avoid coughing, so brace your sternum with your hand or pillow for that and it's not too bad.
 
Ugh...sneezing. That'll be a fun one. Once I start sneezing, I usually sneeze about 10 times in a row. It's not fun even without having my chest cut open.

I'm a little prepared for the pain. When I had surgery for my Hodgkin's years ago, one of them was to remove my spleen and check my lymph nodes. It was part of staging the cancer. I have a scar that goes all the way down my abdomen, just past my belly button. With this new scar added, I will literally have a zipper that goes all the way down the front. Lovely, right? But I remember the pain with the earlier surgery. Sitting up, coughing, sneezing, it was horrible. And I'm sure I'm really not even remembering just how bad it really was after 30 years.

What about eating afterwards? I saw the note about not eating anything that might make me cough. But did you have much of an appetite afterwards? Did you feel like getting up and around, or did you just do it because you knew you had to? What about sleeping? Did you sleep a lot, or did you get rested after a couple of weeks and start feeling some cabin fever? I have a feeling I'm going to go nuts.

Oh, and what about driving? My surgeon said he usually releases people to drive after about 2-3 weeks at their follow up appt. He said he wants me on pain meds at first, but doesn't want me driving while I'm on them. But after that, he's ok with it. What was your experience there?
 
Hi Liz, I never had surgery before, but I think your prior one was probably more painful. I've seen people on here say knee surgery was more painful. My most sore spot lately is where the drainage tubes were, and I think that's because they pierced abdominal muscles to put them in. They don't have to cut muscles in your chest if you're having a sternotomy (like most of us). Clutch your pillow to your chest when sitting up, and swing your legs over the side of the bed. It's not too bad. I was especially happy when the nurse said I could use one elbow to push up a little too - just don't use both at the same time. One other thing I learned: if you wake up from surgery with a sore shoulder/back, have them put heat packs under you. I resisted for the first day and discovered later that it solved the problem. BTW, I inhaled some water the day after surgery and I don't remember the coughing being that bad. Maybe I was still on too many drugs... but even a week later when I choked again, it wasn't terribly painful and I was only taking Tylenol.

You probably won't feel like eating for a few days, and then when you try the hospital food you still won't feel like eating much! Try to eat though, so you can get some strength back. I didn't feel like doing anything, even reading or texting with friends for four days. Even after, my interest in the outside world came back slowly. Getting out of bed to walk around is nice though. After so much laying around it just feels good for your muscles. Be sure to stand up straight; that will help your back.

When you start having cabin fever, it'll be a good sign. It means you're feeling better! Just take it easy. My sweet hubby took me to the mall (too hot outside) about 3.5 weeks after surgery because I was going stir crazy. I walked around for an hour and was done, but I was happy to get out into the world again.

My surgeon released me to drive at 4 weeks, but after one short journey I was sore and gave it up for another week. It helped a bit to drive one-handed to reduce the strain on my sternum. I also put a folded jacket over my chest to cushion it from the seatbelt. I still do that most days.

The key is to not push yourself too much. Try to enjoy a slower pace for awhile. Find some friends to walk with you every day when you get home - at least for the first couple of weeks. After that I loaded my phone with podcasts to keep me entertained.

P.S. Regarding the second choking episode I had: if they give you gigantic potassium pills to take after you go home - they go hand-in-hand with Lasix - they can be dissolved (not crushed) in liquid. It's gritty but has no flavor.
 
I'm. 5.5 weeks post surgery. First day out is amazing, you lived! Be prepared for the breathing tube after surgery. It's not in for long, and don't let it freak you out. Nurses will be monitoring your every breath, so know that you are being watched and monitored very, very carefully and closely. Have a loved one there to hold and caress your hand when you are awake. It was by far the most important thing to me as I went in and out of consciousness. Days 2-4 for me were tough. Once they got the pain meds right and after I made them give me something to sleep on day 3-4 (1.5mg Xanax ) life totally changed. Sleep is absolutely essential. My appetite took a while to return, 6 days. Once home, naps happen, embrace them. Naps happen after walking, after eating. Limit the time visitors stay, naps happen after visits also. I have yet to sneeze, but have a pillow handy for coughs. And use that breathing device they give you as often as possible. Be kind to yourself. It all slowly comes back.
 
Michelle, thanks so much for more info! As I know you know, it helps so much ot hear all of these little details. I could see how the incisions from the drainage tubes would hurt. The incision I have already went through all of my abdominal muscles. Talk about a joy! I'm having a sternotomy for this surgery, so I'm glad to hear that it might not be as painful. I'm still prepared for it not being a walk in the park though.

Paul - I read about the breathing tube on here and that was one of the first things I asked the surgeon about....how long will it stay in! He said they try to get it out pretty quickly. I can guarantee you I would've freaked out for sure if I hadn't known about it ahead of time. I also didn't know about the incisions for the drainage tubes until I read about it on here and saw pictures last weekend. Ugh...more scars! But I'm glad to know about that ahead of time too. At least I know what to expect.
 
Hi Liz - everyone is different and everyone has a different experience of surgery. For example, the ventilator was absolutely fine for me, no trouble and I don't even remember it, yet it was one bit of this surgery that I was most scared of. The drainage tubes also, many say they hurt badly when they are removed but they didn't hurt a bit for me. However, the sternum and rib pain after the first day was pretty bad - they took me off morphine which was very effective and put me on Tramadol and Dihydrocodeine which didn't do much for the pain and caused loads of side effects, including bowel and digestive problems which caused a lot of trouble for me - I lost a lot of weight which I could ill afford to lose which weakened me - had to come off those pain killers in the end and had nothing for the pain which can be pretty bad without any pain relief - I blame the hospital for that and will learn from that experience when I have a re-do one day, hopefully a long time away ! Sneezing - have a firm cushion always at the ready and grab it tightly to your chest if you need to sneeze or cough ! Have a comfortable recliner or cushions for in bed at home as lying down is not easy for the first few weeks. Have a servant - very good advice I got here - and my husband was that, he was wonderful. Another piece of advice was to have my mobile phone by me at night so I could call my husband if I needed something badly - he was sleeping in the bed which I couldn't sleep in so was in a different room.
All the best for your surgery and for a speedy and easy recovery !
 
Hi Liz,

I am now a smige over 8 weeks post op and I have to say that the information I got from here was invaluable.

As for the op itself, I really can say that for me it was pain free, uncomfortable at times but pain free. I do remember the breathing tube and being told not to try and speak and having it removed - it really didn't hurt. The removal of the drainage tubes stung a little but again that was short lived. I lost my sense of taste (this has not returned yet) which does make it a little more difficult to eat, especially as you probably won't feel hungry but like many before me have said, you do need to try and eat. Maybe little and often rather than full meals ?

The biggest thing for me, which with hindsight I should have thought about was not being able to use my hand/arms, so things like slipping down the bed meant that I had to have assistance with, however on the upside I now have abs of steel and can get up from a prone position just using my abs, yeay ! As a side sleeper I did find sleeping on my back a little troublesome in the beginning, so don't be afraid to ask for meds if needed, and be aware that you will probably be sleeping in an uprightish position for a while and as I have just discovered that when I reverted to flat the room spins initially.

I am not a patient patient as those who know me will testify, but listen to the medical staff, and your body and you will be fine. In no time at all this will be a distantish memory and you will be moving on with your life, better, faster, stronger than before.

I will, along with everyone here, be keeping you in my thoughts. Have a safe journey through the op and we'll see you on the post-op side.
 
You all are just a wealth of information, which is exactly what I was hoping for and appreciate!

Anne, that sounds terrible with your pain killers. Granted, I could afford to lose a few pounds, but I don't want to do it that way. I didn't have drainage tubes with the surgery I had 30 years ago, but I did have a tube that went up my nose and down into my stomach. That was the most miserable thing in the world, and having it removed was awful. Hopefully these drainage tubes in my abdomen won't be like that. At least they won't make me gag like that one down my throat did. How long do you have the drainage tubes in? And what exactly are they for anyway?

Red, I'm not patient either. If "red" refers to the fact that you're a redhead, well I am too, and so you would probably have a good sense of how impatient I might be! I'm usually a pretty good patient though, so hopefully that will get me through some of the rough spots. I can't believe you lost your sense of taste though. Any idea what caused that?
 
LDM251;n844918 said:
YI didn't have drainage tubes with the surgery I had 30 years ago, but I did have a tube that went up my nose and down into my stomach. That was the most miserable thing in the world, and having it removed was awful. Hopefully these drainage tubes in my abdomen won't be like that. At least they won't make me gag like that one down my throat did. How long do you have the drainage tubes in? And what exactly are they for anyway?
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Hi Liz - a tube up you nose and down into your stomach sounds awful. The drainage tubes after cardiac surgery are nothing like that - they are just to drain away any blood and fluid that might collect from the cardiac area or else it could press on the heart and cause problems. They keep the drainage tubes in until they think nothing more will come out, one or two days usually. They're just under my right breast so not in the abdomen but in the lower chest - see the pictures of my scar in the Order of theTawdy Shirt section of the forum, you can clearly see one of the drainage tube scars, the other is about an inch away but still right under the breast: http://www.valvereplacement.org/for...the-tawdry-shirt-toots/44053-my-incision-scar
 
Ok. That sounds similar to the tubes my mom had following lung surgery. Doesn't look too bad, but I'm just going to be one giant scar. Good thing I can keep a sense of humor about some of this!
 
Just think of the stories you can make about being in a knife fight. ;-)

I had three drainage tubes - two in middle and one under the right breast. That last one is keeping me from wearing "normal" bras and in soft sport bras. Mine didn't hurt when they came out, but the stitch holding each one in was tight and it hurt a little when they had to get in to cut them (the stitches). It feels a little gross though. Luckily they pulled all three at once and it was over quickly.

As Anne said, we're all different. I didn't have any problems with pain killers (as I switched from Percocet to Tylenol after two days) and only lost a couple pounds. At the beginning you'll lose a ton because first they'll load you up with fluids. I was up 15 lbs and then in a few days it all came off. I guess my kidneys are efficient anyway.

With the breathing tube, just remember that you're getting plenty of oxygen. It might not feel like it, but they'll make sure you have enough!
 
Do you know for sure you will have a full incision down the middle, my surgeon did a 3inch horizontal incision above my right breast, it is amazing only that small area. Although there is still a titanium plate and 5 screws to re attach my rib to my chest bone.
 
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