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

[river-wear]

Joan, she had Hodgkin's so they probably need better access. How long did it take for your chest muscles to heal?

 

[joanpieroni]

Hi River-wear, My surgeon said he would do this small access for the Aortic valve if he could see all the area well, I had a lot of pre testing done and didn't know until I woke up what way he went in. This is the best Surgeon around!!! I am so lucky. Recovery was so much easier, sneezing still hurt and does now even after 18 weeks. I was back to work after 12 weeks, It was hard standing 8 hours, at first and I have a lifting restriction of 15lbs, so I am careful not to push any full cart either ( I work in the #1 grocery store in the US cutting fresh fruit & veggies). I wish more of the patients here this site could experience kind of surgery I did it is truly amazing.

 

[river-wear]

It's great that you had a good experience. However, I don't think a sternotomy was that bad. The worst was having to sleep on my back for six weeks - aside from plenty of annoyances from the movement restrictions (one-handed hair washing, for one). Today is my 8-week "anniversary" and I can sneeze without pain and don't have any lifting restrictions. Of course, I wouldn't try to lift anything really heavy, but I did scrub my shower last weekend and it didn't bother me.

 

[LDM251]

I'm assuming I'll have a sternotomy only because that's what they initially told me. That being said, I was told the heart catherization test would be done through my groin, but then the doctor came in and said, "I think we'll do this through your arm instead." So I'm just going with the flow now. I would absolutely love the smaller incision, but I won't hold my breath. The surgeon has done a CT scan of my chest and arteries as well as an ultrasound of my carotid arteries just to be sure he knows what type of damage from the radiation treatment he's working with. My cardiologist thought I had some damage to the muscle around my heart, but the heart cath didn't show anything at all...no blockages, muscle was fine, all was good except for the aortic valve. So we shall see!

I was wondering how wearing a bra would go...ugh, Michelle...a sports bra? Guess I better go buy at least one before surgery. As for the pain killers, I've never had much trouble with them. I had percocet about a year ago when I had a kidney stone. Major thumbs down to the kidney stone, but major thumbs up for the percocet! That stuff was amazing!!

So here's a question for y'all. The friend I have whose son didn't make it through this apparently woke up the first night after family went home, yanked out all of his tubes, and got up out of bed before a nurse could get to him. I've heard of people sort of freaking out on the drugs and starting to yank out tubes and wires before. My mom did it too following her lung surgery. They're not even aware of what they're doing. Did any of you ever feel the urge to do something like this? I don't want to, but if it's something you do without even being aware of it, I'm not sure how you'd keep it from happening. The last thing I want to do is set myself back by doing something stupid like that. Any insight on this craziness?

And congrats, River-wear, on your 8 week anniversary!!! I can't wait to be able to celebrate that!!!

 

[bocco]

A couple of simple things to make the hospital stay a little more convenient. I'm not sure if these are in the stickys.

Buy some boxer type shorts to wear under the hospital gown after the surgery. It will make it much easier to walk around without holding the back of the gown closed.

They will probably put a needle in the back of your hand so that they can inject pain killers or other medications. I forget the proper word for it. Request they they put it in the hand that you DON'T wipe with.

 

[Paul Schur]

I never felt the urge to do any of that, pull out plugs, wires, etc. and I had them in both hands, both arms, my throat, and of course the chest tubes, an external pacemaker which is standard at Hopkins for all heart surgeries, and a catheter. If anything, I was careful to not get all tangled up. After being on narcotics which were unpleasant, and moving over to Tylenol and Tramadol for pain, never did I think of harming myself or removing anything from my body. I wasn't out if it in that way. I was surprisingly aware and not alarmed about the experience while I was in it. I hope you have the same experience

 

[river-wear]

My experience was like Paul - surprisingly aware. When I woke up, they had loose restraints around my wrists so I could only lift my hands about 4" off the bed. I was trying to gesture about the breathing tube but they couldn't understand me. Oh well - it was removed about 30 minutes later. As for getting out of bed? No way! I couldn't even lift my head off the pillow.

Liz, it sounds very promising they didn't find any additional challenges with all of your tests. Hopefully you'll have a small incision and easy recovery.

As for the sports bra - don't get one that you have to pull over your head. You aren't allowed to lift both hands over your head at the same time for four weeks (if you have a sternotomy). I would clasp it in the front and then turn it around and pull it up. (You aren't supposed to put both hands behind your back at the same time either - sternum strain.) Another good thing for when you get home - pajamas that button up the front. They're easier to put on and I unbuttoned them over my incision during the first couple of weeks.

 

[Paleowoman]

Hi Liz,

I never felt the urge to yank out any of the tubes or wires attached to me, I didn't even feel them. I remember before surgery reading on the forum from a member who had jumped out of bed with his tubes etc attached and who then picked up a fire extinguisher and tried to throw it, something like that. I had also read in the press about ICU psychosis and all that worried me. The evening before surgery (here in the UK you are always admitted the afternoon of the day before surgery) the aneasthetist came to see me and I told him my worries about intubation, the ventilator tube choking me, and my worry about ICU psychosis…..and also intraoperative awareness, I was really scared of that. He spent some time talking to me about those things (he is a top anaesthetist, President of the Royal College of Anaethetists so I knew I was in good hands with him). He said ICU psychosis, for example, would be unlikely to happen, it was very rare and usually only happened to people in ICU for a long time as the medications they are on interfere with REM sleep which causes people to go a bit psychotic.

I got my husband to take some photos of me when I was unconcious on the vent so I could see what it had been like for me. I can see there are actually some restraints coming out from under the covers so I guess they must put those on everyone regardless - I am nicely wrapped up in a blanket or sheet. I look quite peaceful even though that tube is taped securely to my face ! Hubby also took some photos of me the next day when I was still in ICU and fully awake and off the vent - I was in a good mood and feeling well (the only day I was !) and I wanted a photo of me, the Borg à la Star Trek (they have tubes attached to them if you're not a Trekkie) - I actually looked very well as normally I look a bit skinny but with the extra fluids they pump into you I looked great !

Just talk to the medical team looking after you and tell them all your worries…, nothing worse than going into this surgery with extra worries on your mind !

 

[J Mazer]

I had surgery replacing the aortic valve and the aortic arch in November 2013 at St Joseph's in Atlanta. While everything took a little longer than I expected, I came out great and now nine months later am feeling okay. As for my history, I had an ileostomy in 1973 and I think that while the AVR surgery seems more dramatic, in retrospect the recovery from the heart surgery was not as painful. I found that with patience I got through the recovery without any problems and was able to resume my exercise schedule of walking and swimming within two months. I think the most dramatic impact is on the family. The second most dramatic moment is the first time you are "walked" after surgery.

 

[Red]

Hi Liz,

Yes, Red is the colour of my hair

I have for the most part been compliant, this is also something I sometimes struggle with !

The tube from your nose to your stomach was probably an 'NG tube' Nasal Gastric and is often used to administer medications and or 'food' (liquid) for those patients who are unable to swallow. I certainly didn't have one of those.

I have 2 or 3 chest drains, 1 under my right breast and the other 1 or 2 in the center but below my rib cage.
The 1 under my breast did get pressed by the sports bra I wore but actually it acted like a compression bandage and that scar is much flatter that the centre one. By the way I wore mine 24 hours as I felt more secure and it kept my 'girls' in order

I only got the urge to pull everything out on day 3, I was fully aware, it was frustration driven, (patience) ! I spoke to the staff and they kindly removed my central line and the catheter, which made me a happier bunny.

​Gerri

 

[SCCWS]

I ( male) am coming up on my 2 year anniversary of AVR surgery. I was 63 at the time, in good shape in that I walked 30+ brisk minutes daily. I also was 150 lbs which supposedly was a positive. I had never spent a night in a hospital since I was born. I was lucky enough to choose having the surgery when I wanted since I did not have any of the normal signs, i.e.shortness of breath, chest pains etc. My overall experience was great. Like another poster, I had no pain. When I awoke the nurse asked if I had any pain and I said no. But she said I should take a pain killer since the meds from surgery were probably affecting me. That was the only pain killer I took in the hospital. Post-op there was a nurse in the room every time I woke up until after they removed the breathing tube. So I never had the concern of pulling any tubes out. In reading this site, I was anxious about the breathing tube because I always gag very easily when having dental work. But with all the activity after, the tube didn't really bother me. One warning I always post on thie board which actually comes from my wife. When she came in after surgery, she said I looked awful with all the tubes and attachments. So make sure your first visitors are prepared. The next morning they got me up and I sat in a chair for more than half a day. My wife was amazed how good I looked within 24 hours of surgery.

I did have a battle with coughing afterwards at home which was very frustrating but that was the worst of my adventure. I also developed A-FIB afterwards which was also frustrating but only lasted 2-3 months. Maybe I was lucky, but I had many terrific nurses during my stay. Very dedicated staff in the heart surgery ward and really good nurse/patient ratio.

Finally I heard a great story today. A friend of the family who is 84 had valve replacement surgery in January with the same Doctor I did. She will be finishing up her physical therapy in a few weeks and she just booked a trip to England for 3 weeks in September

Good luck and our prayers are with you.

 

[PGARG]

Hi LDM! I have my valve replacement scheduled for 27th, so 2 days after yours. All the best to you. Please post ur experience whenever u can. I'll be trying to post as well while i recover.
Since ours is scheduled so close to each other's date, let me know if you wish to compare notes. We can exchange private email/phone no etc. I am similarly nervous and having someone to compare notes to might be comforting. I'm a hyper connected guy, so i'll be with my phone hopefully from the next day onwards.....(there's a lot of hopefullys these days....)

 

[LDM251]

I haven't been on here in a couple of weeks. Thanks for the information everyone has shared since the last time I posted. I just got back from Vegas and it was a pretty rough trip for me. I knew it was going to be hard, with the shortness of breath that I've had more and more of lately, and sure enough I was right. And my ankles were SO puffy by the time our plane landed! But I'm back to normal today...wish I could say the same for my bank account...and ready to take on this last week before surgery. Saying bye to some of my friends yesterday was hard. I hadn't thought much about that part, but when they were telling me good luck and reminding me to have my daughter let them know how my surgery goes, it really made everything "real". I can only imagine how it's going to be when I leave work on Wednesday afternoon.

PGARG, I would love to keep in touch and compare notes. Let me see if I can figure out how to send you a message on here. And for the rest of you, yes, I'll be posting something as soon as I can after surgery. I'm sure I'll have a whole new round of questions for the next chapter of this journey!