Worries, Concerns, Fears

[BionicBob]

I am new to this wonderful online discussion, and have posted some replies. Bonnie suggested I start a new thread and tell more about myself, so this is my attempt to do that. (Thanks also to the nice folks -- I don't have their names before me right now -- who suggested I move my recliner upstairs to be ready for use.)

My open-heart surgery is scheduled for February 16 at Inova Fairfax, a highly rated hospital in the DC/Northern Virginia area. I have to have a leaky valve and an enlarged aortic root replaced, via something the med people call "Bentall's Procedure." I am 63, and docs have told me since I was in my 20s that I had a heart murmur and probably would have to a valve replacement eventually. The enlarged root has become an issue in later years. I gather the leaking contributes to the enlargement, or dilation, in medspeak. My cardiologist actually wanted me to have this done a year ago, but the surgeon said no, let's monitor it some more. The echo in December showed further enlargement and the cath showed leaking had worsened.

Before I go further, I'd like to mention the fear that keeps me awake at night as I think about the surgery. It may sound silly to have such a fear, when there are obviously larger things to worry about. But this is it: My throat gets dry when I get nervous, and I have this fear of waking up in IC with a breathing tube down my throat and very dry and still not being given any liquids. Before my catherization, they gave me a damp washcloth and it helped just to hold that to my lips. Do I have an exaggerated fear for what it will be like in intensive care? Are you so groggy at that point that things just happen without you as the patient being that concerned about it? (Sorry for being such a wimp

Of course the big pre-op decision is mechanical or biological. I gather this is very much an individual decision, and there are devices of both kinds that work well. I am leaning to selecting the best bio I can find -- the surgeon has mentioned a stentless bioprosthesis that would be a combination root and valve replacement -- and I want to find out more about that. If there are those who have had a Bentall's, I'd love to hear from them. But I also love to hear from any of you, no matter what variety of surgery you have had or may be facing.

A little about me: I am a writer/researcher. I have tried to stay physically active throughout my life -- used to be a runner, but have slowed down to walking as a result of knee and back problems. (Spinal stenosis -- that's another story, but it has responded well to physical therapy.) One of my greatest pleasures is walking my yellow lab/golden retriever "Sadie" for a couple of miles every morning. She's sure going to miss those walks for a while. That's another question: How long might it be before I would be up to walking Sadie again?

I am blessed with a loving and supportive family. My wife had a stroke in 1996, from which she has recovered well -- but the surgery she had to repair a brain aneuryism affected one quadrant of her eyesight, and so she's rightly worried about trying to drive. So our daughter plans to take time off from her work and live with us for a month or two (along with a precious grand-daughter) during my recovery. My son has been wonderful setting up the house to facilitate recovery. We have been baseball buddies from when he was in Little League all the way through to him pitching on his college team, and more recently attending major league and minor league games together. He is very worried about me, calls almost every night, and I am doing my best to ease his fears.

I am rambling on and this is getting long. Anyway, I have tried to tell a little about myself, as Bonnie suggested, and to express a few of my concerns. Thank all of you for being you.

Bob

 

[Ross]

Well first of all, you are not rambling!

Second of all, it's perfectly normal to feel this fear. I don't care how many times you've been through this, it's the same. We as humans have a hard time dealing with things that we have no control over. Once you realize that you have no control, it will ease up some.

The breathing tube--You'll be out of it for most all of it and possibly won't even have it when you do come around. Everyone is different. They will remove it as soon as you can breath for yourself. I don't want to compound your fear of dry throat, but you most definately will be very dry. They'll give you ice chips as soon as possible. Your not going to be able to swallow as long as the tube is in anyhow, so hopefully you'll be out for that portion of the project. Be sure to discuss this fear with the surgical team and with your Doctor.

Try to make peace with yourself and just enjoy life as much as possible until surgery. It's hard, I'm not going to say it's not, but you'll get through it and in time, feel better then you have in the past most likely.


Welcome to the funny farm. Yell if you need specifics. Most of us have been through it all and some a couple times.

 

[geebee]

Bob,
Your fears and concerns are quite valid. Since they are so familar to us here, never be concerned about expressing them. You will always get support and answers.
It sounds like you have set your house up properly when you get home after surgery. Make sure your recliner is close to a bathroom as well.

As far as the breathing tube goes - it is one of those "everyone is different" things. The experiences here have run from "it's no big deal" to "it's the worst thing I have ever had happen". Personally, I fall somewhere towards the second comment. I am claustrophobic so I had a bit of a problem with the "feeling trapped" part. However, I do not remember my throat being dry, only my lips. The nurses in recovery are well versed in keeping your lips moist. After my last surgery, all I had to do was point to my lips and my nurse was wiping them with a lemony liquid towel thingy. It was fabulous.
The breathing tube is not pleasant but you are very groggy and may find that you don't even remember it after (many, many members say that).

The choice of valve type, as you stated, is very personal. If I were 63 and facing surgery, I do not know what I would choose. You are at an age where a biological valve might not last a lifetime since people are living well into their 80's these days. A biological usually lasts from 10-15 years so it would be a tough decision if you are trying to live the remainder of your life with just one replacement valve.
I am sure you can see on this website that coumadin is not the "horror story" that you might hear about. I have been on coumadin for 24 years and have had no problems with it. I am not necessarily advocating a mechanical valve, I just want you to have all the information needed to make a valid choice.

When it comes to walking your dog. Is he the type that walks with you or pulls on his lease? If he merely walks with you (or you can get him to do so), you will be able to still walk him. Walking is the best and needed exercise during recovery so you should walk a lot once you are feeling well enought to go outside (follow your doctors' recommendations). Our recovery mantra here is rest, breathe, walk, breathe, rest, repeat.

I feel you have so much going for you in the preparation, that you will do very well. A couple of other suggestions: make sure you have lots of pillows available at home, buy a "Heart Hugger" now so you have it with you when you go to the hospital (if you are not familar with the HH, visit their website), stock up on lots of easily prepared foods and remember to smile, hug your family, pray and smile some more.

Take care and please have someone post after your surgery. We worry and want to hear how it went.

 

[Nancy]

Hi Bob-

After watching my husband go through several thoracic surgeries--he's had three heart valve surgeries and two lung surgeries, all of which required the vent, most patients will be so groggy and doped up, they won't be terribly aware of what is going on while the vent is in there. The reason you are not given any liquids for a while after surgery, even after the vent tube is removed, is because your system will not be responding like it normally does due to the aftereffects of anesthesia, and it is very possible to throw up anything that is in your stomach and possibly aspirate it into your lungs. You will have, in addition to many other tubes and attached machinery, a stomach tube that will keep stomach contents and fluids vacuumed out.

As you become more alert, can breathe on your own and have the vent tube removed, they will introduce liquids very, very slowly with ice chips at first. If that goes well, then you'll have small sips of water. At one point, my husband had mouth sponges soaked with water.

Make sure you discuss all of your fears with your surgeon and also when you go to your pre-op appointments. If they know this fear, they will be more aware of keeping your mouth at least moist, after the tube is removed. I am pretty sure they have remedies for dry lips even with the tube in there.

They want to get the tube out as soon as possible for you. It comes out when your body can safely breathe on its own, and the machine has settings that can monitor this so they can tell when you are responding appropriately.

Also bring a notepad and pencil with you. It's a good idea to draw some stickmen drawings of your fears with little notations, so you can point to the picture that expresses what you want them to take care of.

This period of time is very short. Your hospital stay will only be about 4-7 days, and you will, on average be in ICU for one to two days, then to the step-down unit and then to a cardiac surgery room.

While in the ICU, you will have private nursing care. In the step-down unit, you will share a nurse with two or three others.

And you'll be up and sitting within about two days, and possibly even taking a short walk.

Time will go very fast. You'll be surprised.

 

[tobagotwo]

I fall to the other end of the spectrum. In fact, knowing I was safe because of the tube, I actually relaxed with it, realizing how neat it was to be so lazy that I didn't even have to breathe for myself.

Here's what I first wrote about the intubation (breathing tube) experience:

I had the same fear of it before the surgery, and was afraid I'd feel like I couldn't breathe, or panic and try to fight it or rip it out, and wind up restrained and terrified. And my gag reflex...I could only imagine.

But here's what happened...

I woke up, and found I was in a sitting position, with a circle of people around me, including technicians and my wife and son. The very first coherent thought in my mind was, "It must be over. It's done. I'm alive!" I immediately caught on that I couldn't talk.

Because I knew there might be a tube, I realized what it was immediately. However, I didn't feel any panic. I felt like I had plenty of oxygen. I wasn't gagging at all (it goes way past your gag reflex). I didn't want to keep it in, because I wanted to talk and breathe on my own, but I didn't feel any real agitation about it, either. There is some difficulty if you try to breathe against its pattern, as it overwhelms your sleepy lungs, but you don't feel like you're choking, or out of air. Unlike Ross's machine, mine was very quiet, and I couldn't match my breathing rhythm with the noise.

My problem was that I had kept waking up, trying to breathe, and indicating that I wanted them to turn it off. As soon as they would oblige me, I'd relax, fall back asleep, and quit breathing. Thus, they had kept me on it.

Make sure someone you trust will bring a pen and pad, so you can write notes. That greatly lessened any anxiety I had, as I was able to communicate, which I saw as my biggest problem.

It is somewhat unpleasant when they squirt water down the tube and suction it up again to keep it clear, but really not bad, and the air comes back on before you can panic.

When they take the tube out, they start pulling and you start trying to help push it out with your throat. However, it is like the magic kerchief trick, where the magician just keeps pulling an endless string of colorful handkerchiefs out of your mouth. That tube just seems to go on and on. Again, though, it finishes coming out long before you get panicky.

The only thing lasting from it for me was a fat lip from a clip that help it in place. I have been informed since (from this site, of course) that a piece of tape holds the tube just as well, and I should request one next time.

It really, really is no big deal. If you do wake up with it, just relax and don't fight it. After all, it will have already kept you alive for hours.

As far as your bioprosthesis, you didn't mention a manufacturer, but there is a good possibility the doctor was referring to the Medtronics Freestyle http://www.medtronic.com/cardsurgery/products/free_index.html or the Prestyled Freestyle: http://www.medtronic.com/cardsurgery/products/pref_index.html

The whole thing is not as bad as you imagine it (as we all imagined it), unless you have some very unfortunate issue. But that is a very small percentage of us. For the vast majority, the consensus is that the waiting and imagining was the worst part.

I requested and have a Mosaic porcine valve, which means that (if I'm fortunate) I will have to undergo the operation again in +-20 years or so. Knowing what I do now about the operation, I am glad I made that decision for myself.

Best wishes,

 

[EVELYN]

Hi Bob

Welcom to a great site!!! You are now a member of the family, so feel free to "ramble" all you want. I'm Evelyn, whose husband, Tyce, had AVR 2 1/2 years ago. Quite frankly, I'd be worried if you WEREN'T fearful!!!

Tyce had his vent out quite quickly...surgery at 12:30, vent out at 4:30. We were both well aware of the "panic" people can have with the vent, but luckily we had vr.com to help us understand it. I just kept telling Tyce to let it breathe for him, he relaxed and it was out before he knew it.....of course he did "chew" on it for a bit!!! From that point on it was ok for him to have ice chips, which were greatly received.

Tyce had a mechanical (St. Jude's) valve "installed" because he said he didn't want to ever go through that type of surgery again and also because our surgeon recommended it and said that the coumadin regime was not that big a deal.....he was right. Learn as much as you can about the valve choices you have and pick the right one for you. I truly believe most surgeon's try to accommodate your choice unless there's a problem once they get inside.

Good luck with your surgery, join us and share your feelings anytime you'd like---there's always someone here who is willing to listen. If your family has questions, please share them, too. They're going through it, too, and it's just as hard on them. I know that I would have rather had them do the surgery on me instead of making Tyce go through it.....it is definitely an emotional time for all involved, but you WILL get through it.

Evelyn

 

[momshell7]

Wecome to the family!

Wecome to the family!

You have found a great place!! This site is a wonderful place to find all kinds of resources. My husband had his aortic valve and part of the root replaced last October. This was his second surgery. His first one was when he was 16, he is now 38. He was also fearing the surgery. He and I both got a lot of comfort from this site. Please feel free to ask anything you need to. Rambling is also welcomed. Everyone on here understands the fears and questions that someone facing surgery has. There is also a section on here for significant others. Your wife or other family member may also find comfort reading the posts or posting questions and concerns there.

As far as the valves go, my husband had a stentless porcine valve. It was highly recommended by his cardiologist and his surgeon. They felt it was the best valve currently available for Jeff. The valve you choose has to be the one that is best for you. Your surgeon will recommend the one that he/she feels is the best for you, but please don't feel that you have to go with the one your surgeon recommends. There is a lot of information available on different valves. You should read what you can and choose the valve that best suits you.

I hope you find as much comfort in this site as my husband and I have. My husband is also a member on here. His name is twoboysdad. If you search his name you can find the things he has posted. Before his surgey he found some links to sites that told about the surgery. There is a site that actually shows the surgery if you would like to watch it.

Again welcome to the family!

Michelle

 

[Phyllis]

Hi Bob,
Nice to get more details on your situation. Dick was 70 ( a very athletic and active 70) when he had his AVR with an Edwards Magna bovine valve in December 2003. He was in ICU for less than 24 hours and has no memory of them even taking out the breathing tube. He came down from the OR about 1 PM and they didn't remove it until the middle of the night as he was so sound asleep from the anesthesia. He went home from the hospital on the fifth day, walked around the house mainly for the first week and then started walking outside. Even though it was very cold, he was walking three miles a day by the time we went to his 6 week check-up with the surgeon. We flew to our winter home in FL at 8 weeks and he was hitting golf balls and playing tennis at 3 months post-op. We wish you and all in the waiting-room the same good results. There's plenty of help here for all and any questions that may arise. No question too silly to ask!

 

[BionicBob]

Thanks a Bunch

Thanks a Bunch

I posted this morning and I already have all these helpful responses to my pre-op concerns. Amazing! A heart-felt thanks to all of you. Your answers have been honest (I know this is not going to be a picnic in the park) but reassuring. I can make peace with the idea of the temporary vent. I will mention my concerns to the staff beforehand and I am sure they will do what they can to provide moist sponges or whatever. I'll bring a notepad or have a family member do it -- good idea. And I'll check out those Heart Huggers.

As for the recliner, after I got your posts, my son helped me haul it upstairs so that I now will have ready TV access, a picture window, a computer hookup, a bed, and a bathroom, all within several steps. So I feel better prepared now for recovery. (My wife was not happy about me helping to lift it, but we took our time and it was not that heavy. No more lifting now -- I promised her.

My surgeon comes very highly recommended, but during our first discussion, he didn't really lean one way or the other concerning mechanical or bio. He did mention the stentless model, and that may well be the Medtronics freestyle. Maybe it's good that he didn't advocate for one selection or the other, but I think I'd like to meet with him again to see if he will make a recommendation or at least help me narrow down the best choices for me.

As for my dog Sadie, she is very spirited and does strain on the leash for at least a few blocks until we get in our walking area. We'll have to work out an accommodation.

So, again, though I haven't responded to you individually at this point, wanted to say I appreciate all of the responses. You were all very helpful. I do feel more at peace now, and I will continue to read all the posts on here, both new and old.

Bob

 

[geebee]

Bob,
Please apologize for me to Sadie for calling her a he. Oops . You are right, if Sadie is a "lease puller", you should probably walk with someone else walking her. A Lab pulling on a lease pulling on your arm will pull on your sternum (not a good thing for the first few months).
You certainly sound prepared and I wish you well.

 

[Eowyn Rose]

Bob,
Welcome
i walked my dog by tying the lead to my belt around my waiste. i started to walk the dog about 5 weeks after surgery. He could pull without pulling me apart. That is just an idea how you might take your dog for a walk you might come up with a better idea.
Eowyn Rose

 

[Granbonny]

Hi Bob

Hi Bob

I'm glad you started your own thread.. We have a member who is a doctor..He goes by Marty..and he had his surgery at Inova Falls..Falls Church, Va. Go to members at the top of the forum. click M and scroll down to Marty. Send him an e-mail. he is so nice..I'm sure he will reply back to you. He is age 73? and had a mech valve, too. Yall could be neighbors Bonnie

 

[momshell7]

Heart hugger info

Heart hugger info

Hi, I see you mentioned that you were going to look into the Heart Hugger device. Here is a link to their website www.hearthugger.com/flash.html. My husband, Jeff AKA twoboysdad, got one when he was in the hospital having his surgery. He said it was a God-send. This was his second surgery and he said it was amazing the difference it made. He also said that he would never have another heart surgery without having a heart hugger. I know there are a few other people on this site who have also used them and feel the same way. You can search heart hugger or sternum support or twoboysdad on this site to find additional posts about the heart hugger. Hopefull this information will help you.

Michelle

 

[Bryan B]

Hi Bob,

Everyone has already given you great advice, I thought I would just throw in my experience with the vent and the dog. I think we all worry a bit about what the vent is going to be like, but for me it turned out to be no big deal. My vent was so quiet that I couldn't hear it to try and time my breathing with it. But I was still pretty doped up so I was able to just drift back off which solved the problem. Finally they woke me up and asked me if I wanted it out and I gave them a nod and a big thumbs up. Having it removed was painless and came out in one swift motion. My experience was that any time they removed a tube or line or wire etc., any unpleasantness only lasted for a moment and it felt SO GOOD once it was removed that it was worth that unpleasant moment every time. As for the dog...I would avoid walking her on a leash for at least the first few weeks after you get home. One good tug from her and you won't want to do it again for awhile anyway. My dog is bad about pulling on the leash but she is good about not running off, so I took her out in the back yard without a leash and played with her. I found that her companionship during my recovery was so comforting...I'm sure you'll feel the same way. She seemed to know that I was hurting and was at my side 24/7.

Take care!

 

[Guest]

I'm afraid I can't add much more than what others have already written to/for you. But,

*raises eyebrow*

this caught my attention...

A little about me: I am a writer/researcher.

...and I thought I'd ask if you'd like to expand on this somewhat. I can tell you are a writer from your posts....

Welcome to VR.com!


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html

 

[gadgetman]

I am post op 8 days sitting in my computer room.

I had several ?why me? bouts that kept me awake at night. All the ?what ifs?. Then I found this site. It was literally a Godsend. As you read over the posts here in the next several weeks you will come to understand that this is NOT THE END. You could step in front of a Mack Truck tomorrow (and being assigned to the DC area for almost 20 years of military career I can say LOOK OUT WHERE YOU WALK). I felt myself crying, laughing, saying WOW!!! (and other military jargon), and realizing ?It ain?t as bad as it could be?.

As I was suffering from shortness of breath and dry mouth (my tongue felt like cotton sometimes) I was a little concerned. But most procedures limit your fluid intakes to midnight before (NOP?another one of those Doctor postings that effectively says ?give this man or woman nothing by mouth after midnight--let the games begin). My nurses were always helpful in every way, giving a couple of ice chips, giving the old standby Tylenol when they could, and following up with the strong stuff if needed. I also feared THE TUBE but again reading post here I felt there were several ways to handle it. Fight and kick as long as it was in or just stay mellow and go with the flow (so 60s). I had a fantastic post op nurse, Jennifer, when I got back. She had a soft calming voice and let me know when things were going on that I needed to know and letting me sleep through the rest. I remember her leaning over me sometime during the night a quietly whispering that we were going to get that nasty tube (which I had become unaware of) told me to cough real hard (easy to do HA HA) and it was over.

Because of the condition my condition was in, I spent 5 days in ICU but 3 were pre op. My ICU was open with two beds in each bay. At least one nurse was in there (or just a few steps away) at all times. The alarms going on and off on the monitors were annoying but I worked thru it.

My Doc took the same approach about valve selection. What did I want? I told him I would go with what he was comfortable with. Because of my age (57) the mechanical valve offered more long term promise. I had feared ?BLOOD THINNERS FOR LIFE" until I started reading some of the posting. The husband of one of my wife?s friends had went for the biological valve in order to avoid the blood thinners but even with the biological valve wound up on them.

STEP AWAY FROM THE DOG (GUN DRAWN). As the proud "friend" of two lab/husky mix dogs each weighting in at over 130 lbs each and a ?tiny? setter of about 60, they have almost killed me with their sudden jerks back when I was healthy. As my Doc said stay away from anything over 10 pounds in my arms (10 pounds ain?t much) I could (NO DON?T WANT TO GO THERE) just imagine the sudden thrill when one of my dogs lunged. OUCH!!!!!!!

I stayed away from the pen and pencil and used my ?stay knocked out? approach. I vaguely recall the wife telling me everything was OK and she loved me but Jennifer (my nurse) became my best bud that night.

So go with it. Each person (as you will find from reading here) handles it in their own way. I felt no apprehension or dread during my entire stay even when the Doctor representing the "Heart Transplant Team" paid me a visit!!!!
Post your thoughts, fears, joys, and experiences for everyone to see. That is what this site is for. Got to take a break and move these legs (did they transplant an 80 year old guys legs on me?????)

 

[labguides]

Bionic Bob
Please have someone post a message here right after your surgery. We will be waiting to hear how the surgery went.

 

[BionicBob]

More Great Posts

More Great Posts

Thanks, everybody. I love it the way that no concern is too small for the friendly and helpful folks on here to address. As for walking my dog Sadie, I think she'll have to be content for a few months with me just playing with her in the backyard. (I think I've gotten some good advice here about not being tugged suddenly while holding a leash. I just as soon not learn the hard way.)The retriever in her loves nothing better than chasing a ball anyway, and for Christmas my son gave me some kind of gadget that lets you pick up a ball off the ground without bending over, and then you can propel the ball with it. Maybe other members of the family can be recruited to walk Sadie lady once in a while.

And I summarized some of the other good advice as, just go with the flow. You've helped me prepare mentally a lot. I really appreciate it.

 

[BionicBob]

Hearthugger

Hearthugger

Hi, I see you mentioned that you were going to look into the Heart Hugger device. Here is a link to their website www.hearthugger.com/flash.html. My husband, Jeff AKA twoboysdad, got one when he was in the hospital having his surgery. He said it was a God-send. This was his second surgery and he said it was amazing the difference it made. He also said that he would never have another heart surgery without having a heart hugger. I know there are a few other people on this site who have also used them and feel the same way. You can search heart hugger or sternum support or twoboysdad on this site to find additional posts about the heart hugger. Hopefull this information will help you.

Michelle

Michelle, Thanks! Is the Hearthugger something you can buy before you leave the hospital, or is it something you need to get independently? Thanks!

Bob

 

[geebee]

Bob,
Since Michelle is off-line, I will answer regarding the Heart Hugger. You should definitely buy it now and take it to the hospital with you. To my knowledge it is not available at any hospitals and you should have it to use right after surgery. I did not have it for my surgeries and I sure wish it had been available. After surgery, they make you cough to keep your lungs clear. Coughing (or sneezing or laughing) will all make your sternum feel as if it is going to tear open. The Heart Hugger takes the place of holding a pillow to your chest (and from what I have heard is 100 times better) to help with the discomfort (read pain).
I think it takes a week or two to get it so you should act right away.
Hope this helps.