New Valve Fears

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
C

centuryltd

Just looking for some thoughts on how you have mentally coped with all the ramifications of having a new heart valve. I'm almost three weeks out and am learning about INR levels, etc. I think about infection of the new valve as well as endocarditis down the line. That's what put me here to begin with and they identified the bacteria as coming from the mouth but I had been in excellent dental health prior, and did not have any dental work done. So how the bacteria got into my system is a mystery to me. So how can you prevent something from happening that you don't know how it happened to begin with? I was warned that during my recovery I would feel many different emotions as well a feeling of not being able to trust my body for a while. So I struggle with some of those things and I'm sure many of you have also. I appreciate any thoughts you have for me.

Thanks,
Steve
 
centuryltd said:
So how can you prevent something from happening that you don't know how it happened to begin with? I was warned that during my recovery I would feel many different emotions as well a feeling of not being able to trust my body for a while. So I struggle with some of those things and I'm sure many of you have also. I appreciate any thoughts you have for me.

Thanks,
Steve
So how can I present myself having been born with a bicuspid aortic valve? No answers to date. I'm glad they at least warned you about the emotional roller coaster that follows OHS; it all came as a shock to me. Stick around, share your concerns, we've been there before.
 
After having watched my husband go through many thoracic surgeries, he's had 3 valve surgeries and 2 lung surgeries, I can say that what you are feeling right now is what most have felt.

Mood swings, emotionality and sleeplessness as well as many other things happen right after and continue on for a couple of months.

Some of this is physical and some emotional.

Many here can attest to the fact that it does happen.

I think that others will tell you the very same thing. Give a little time to see if it irons itself out. For many, it does. BUT, if it doesn't then ask your doctor about antidepressents to help you. It is not a weakness on your part, but rather a recognized aftereffect from heart surgery. Doctors are aware of it.

Life it just too short to let this darken even one day in your life.
 
Personally, I went through too much and am just glad to be alive. I've never really thought about the valve except for day one when it was ticking so loudly. After that, it wasn't an issue for me anymore. I don't think anyone likes knowing parts of them are artificial, but we do what we must to stay alive.
 
They explained it to me as a near death experience. There is (and probably always will be) emotional baggage to go with it.
It gets better, or is easier to deal with, as time goes on. Talking helps.
It really hit me hard on my 4 week visit with the surgeon. I was asking about how healthy the rest of my heart was. His reply was "I held your heart in this hand. I can tell you that it is fine".
He was telling me I was healthy. All I heard was 'held your heart in this hand' and I nearly lost it emotionally.
I guess I always will have problems like that. However, they are problems I get to live with.........
Hang in there. Things get better.

greg
 
Hi Steve,
Nobody warned me about feeling like I couldn't trust my body post-surgery but that is something I have really been struggling with. If I were in your shoes and got a heart infection without understanding how the bacteria was introduced into my body, I would feel very unsettled too. In talking about trying to avid endocarditis as it relates to dental procedures here is an excerpt I wrote on another email discussing dental work and medicine dosages:

"My surgeon told me that no one really knows how much anti-biotics to perscribe prior to dental appts. or surgeries etc... He said there is really no proof the antibiotics even work as people who didn't take antibiotics prior to dental procedures get endocarditis and people who did take antibiotics get endocarditis. He said there is no sound research that proves it helps. This is evidenced by the fact that the dosing reccommendations have changed throughout the years (He inferred the reccomendations change because the medical community is always experimenting with what they think is the "right" dosage, but they don't really know.) I can attest to this since I have been taking anti-biotics before dental appts. since I was eight. In the early years I had to take a handful of huge pills before and after my appt. The dosages have varied greatly over the years and now I think I take 2 pills two hours before.
So, I said to my surgeon, " What your saying, is that I should take the antibiotics before my appt. and then I should pray?" He laughed and said, "Yes!"

Eventhough you have no idea how or why your heart became infected the first time, the truth is we are all vulnurable. Even though we may feel more secure taking our antibiotics (and who knows maybe it does help) the truth is anyone who takes the antibiotics could still get endocarditis, from your experience, it sounds like people who haven't had dental procedures can still get endocarditis.

My sister is an ICU nurse. We have been discussing how fragile I feel and how I could keel over dead from a number of complications. My sister said that as a nurse, even though she is in perfect health, she feels vulnurable too because the patients she takes care of remind her how vulnerable we all are. She told me about this woman in her late 20's who came into the E.R. with flue-like symptoms and was dead 10 days later. She had spinal meningitis and her body went crazy clotting all over the place, they amputated her legs and were going to have to amputate her arms....awful. Thankfully she died after her family decided to withdraw life support. Who can explain why she got spinal meningitis and suffered so, and then passed away?

I don't know if your religious, I am and I believe that God has a plan for each of our lives. Trials in our life usually stem from one of two places...the first are trials that come as a result from our own bad decisions (like robbing a bank, or lying etc...) Then there are trials that have nothing to do with choices you have made, they just happen. Bad things happen to good people and those are the kinds of trials I think Heavenly Father allows us to experience for our own growth...to stretch ourselves and become better people. So you can't make sense of why you got sick or how to prevent yourself from getting sick, when there is no logical explaination of how you got sick in the first place. My Dad always said, "work as if everything depended upon you, and pray as if everything depended upon God." That's what I try to do. I don't mean to sound preachy. There are probably many who would totally disagree with what I am saying. But this is what has helped me through this crisis. I hope you find something to help you.

Best wishes to you! --Janea
 
Steve,
What you are going through is so very normal. I remember after my first OHS I was afraid to fall asleep. I kept thinking my new valve would just decide to stop working. However, I never worried about that particular issue before having a mechanical valve.
I am reminded of a great movie called "Threshold". It is a story of a heart surgeon who was working with a team who developed an artificial heart. As a last resort they decided to implant it into a young woman who would have otherwise died on the table. She was very depressed after surgery and expressed her concern that the new heart would stop. The surgeon said she had that concern with her diseased heart. She looked at him and said "but that was different". The sugeon asked "how". Her answer - "because it was MINE".
I truly understand that comment. There is something really odd at times having an artificial valve and I had some tough times dealing with it. Eventually I realized it wasn't going to stop and really was a true friend.
Now, over 25 years later, I am merely happy to be alive. You, too, will get past this and find your valve to be a new found friend.
 
My husband had endocarditis a few months prior to his AVR. Having had endocarditis, his new valve is at a greater risk of infection that a traditional bicuspid valver. While theories do exist that antibiotics do not prevent endo from dental work, I will tell you that we use antibiotics prophylatically in surgery to ward of infection, prior to begining a variety of procedures. Nathan will not be able to have dental work done for a minimum of a year after having had endocarditis. When he does finally have his first teeth cleaning, it will be a far bigger production than 4 amoxicilin 500s. Both the Mayo and his GP feel that he will need to be treated prior to and post dental work. And no, he had no dental issues prior to his endocarditis, from strep v. We were told by the infection control team at the mayo that any deep venous puncture lasting longer than 45 minutes puts a bicuspid valve at risk. Totally understand where you are coming from....I think 'anxious' has become my middle name since Nathan became sick/had his surgery. The good news is, he has handled it all alot better than me :)
 
I don't have a new valve. My original was repaired. I carry emotional baggage with me all of the time. The only people who have a clue to what I feel are on this website. None of my friends or family can possibly relate, except the one who just had the same procedure 11 wks ago.
I don't know my heart function anymore. I still check my pulse occasionally when I am working. Anytime I feel the slightest bit odd, I blame my heart. However, I am very grateful that there are teams of medical specialists who could fix all of us so we can look forward to a much longer and healthier life than we would have had without the surgery.
I hate roller coasters but I got one one 8/15/05 and I will stay on for the full ride. Keep posting.
 
Steve -- I haven't really dwelled on the new valve that much other than to just hope I can successfully get myself through the recoup period without incident. I've been told my tissue valve could last as long as 22 years, so I am not that fearful at this time. And who knows .. 22 years from now, or 15 years, whatever, they will probably be doing some very remarkable, non-invasive replacement surgeries.

I was quite concerned about my damaged Aortic valve that led to the surgery. The more research I did, the more frightened I became because of all the bad things that can cause AI. But thankfully, all they found was a torn leaflet and everything else was ok. Probably caused by the damn high bp I've been fighting most of my adult life.

I almost 3 weeks post-op, and can't wait for it to be six weeks. I hear by then that almost all of the incision pain will be gone. Kind of gets me down right now even though I know I am progressing well.
 
Steve,

I remember three weeks out as being pretty difficult to deal with emotionally. I felt disoriented and depressed quite a bit. I still can't wrap my mind around what I've been through. I often have that, wow, what was that all about feeling. My aortic valve was replaced 8 weeks ago tomorrow. Sometimes I wonder what I may have done to wear out my bicuspid valve when others are lucky enough to get through a lifetime with theirs. I think it is natural to wonder why something like this happened to you. I try not to wonder what else might happen. I think it's helped me to voice my concerns to members of this forum and to my doctors.

I'd like to offer this encouragement. It's really early for you. I've found that as I have felt better physically, I've also felt better mentally. I want to live life more fully now and I hope I will have the courage to do just that. When you feel a little better maybe you could make a list of things you would like to see or do.

This isn't an easy thing to deal with. It's not fair to be dealt such a blow. On the other hand, we're alive. Tomorrow I will go back to work, same old job but not the same old Shirley. ;)
 
Janea said:
Hi Steve,
Nobody warned me about feeling like I couldn't trust my body post-surgery but that is something I have really been struggling with. If I were in your shoes and got a heart infection without understanding how the bacteria was introduced into my body, I would feel very unsettled too. In talking about trying to avid endocarditis as it relates to dental procedures here is an excerpt I wrote on another email discussing dental work and medicine dosages:

"My surgeon told me that no one really knows how much anti-biotics to perscribe prior to dental appts. or surgeries etc... He said there is really no proof the antibiotics even work as people who didn't take antibiotics prior to dental procedures get endocarditis and people who did take antibiotics get endocarditis. He said there is no sound research that proves it helps. This is evidenced by the fact that the dosing reccommendations have changed throughout the years (He inferred the reccomendations change because the medical community is always experimenting with what they think is the "right" dosage, but they don't really know.) I can attest to this since I have been taking anti-biotics before dental appts. since I was eight. In the early years I had to take a handful of huge pills before and after my appt. The dosages have varied greatly over the years and now I think I take 2 pills two hours before.
So, I said to my surgeon, " What your saying, is that I should take the antibiotics before my appt. and then I should pray?" He laughed and said, "Yes!"

Eventhough you have no idea how or why your heart became infected the first time, the truth is we are all vulnurable. Even though we may feel more secure taking our antibiotics (and who knows maybe it does help) the truth is anyone who takes the antibiotics could still get endocarditis, from your experience, it sounds like people who haven't had dental procedures can still get endocarditis.

My sister is an ICU nurse. We have been discussing how fragile I feel and how I could keel over dead from a number of complications. My sister said that as a nurse, even though she is in perfect health, she feels vulnurable too because the patients she takes care of remind her how vulnerable we all are. She told me about this woman in her late 20's who came into the E.R. with flue-like symptoms and was dead 10 days later. She had spinal meningitis and her body went crazy clotting all over the place, they amputated her legs and were going to have to amputate her arms....awful. Thankfully she died after her family decided to withdraw life support. Who can explain why she got spinal meningitis and suffered so, and then passed away?

I don't know if your religious, I am and I believe that God has a plan for each of our lives. Trials in our life usually stem from one of two places...the first are trials that come as a result from our own bad decisions (like robbing a bank, or lying etc...) Then there are trials that have nothing to do with choices you have made, they just happen. Bad things happen to good people and those are the kinds of trials I think Heavenly Father allows us to experience for our own growth...to stretch ourselves and become better people. So you can't make sense of why you got sick or how to prevent yourself from getting sick, when there is no logical explaination of how you got sick in the first place. My Dad always said, "work as if everything depended upon you, and pray as if everything depended upon God." That's what I try to do. I don't mean to sound preachy. There are probably many who would totally disagree with what I am saying. But this is what has helped me through this crisis. I hope you find something to help you.

Best wishes to you! --Janea

Steve, I can't improve on what Janea wrote because it was so well-written.

I went from diagnosis to surgery within 30 days so I didn't have much time to think about it prior to surgery. Post surgery, I had a lot of time to think about it and I also went through the "why me" emotional roller-coaster.

Like you, my natural bicuspid valve could not hold off the endocarditis attack from a prior dental procedure. I lost my father at age 44 due to a heart attack and I never met his biologicial father as he also died young. Through my 20s and 30s I always had an emotional cloud over my head when it came to my heart, knowing something was probably wrong. I did not know I had a bicuspid valve until the diagnosis prior to surgery so I feel very blessed that I discovered this problem during a routine physical.

Now, instead of "why me", my approach is "why NOT me?" My new valve saved my life and I count my surgery as a blessing that will now allow me to spend more time with my children than my father had with me.

Nothing in life is guaranteed and I am happy for each new day as a result. My surgery only helped reinforce that belief. :)
 
Well, Steve, I think that after the first few weeks of adjustment, most of us just become alert to heart issues, rather than obsessed. Of course we're obsessed immediately after surgery; we're checking ourselves all the time - weighing every morning, breathing, walking - our entire day is filled with "recovery."

But as we move on and rejoin the world, we don't think about it most of the time. We take our meds and go to the dentist twice a year (in a good year; I usually get to trek to the dds MUCH more often than that) and floss and work out and go to work - you know - life just kinda takes over again.

I think the post-surgical attitude is probably affected by how sick you are prior to surgery. I was very ill - congestive heart failure - so I felt better immediately (my criterion for feeling better was breathing while lying down). I think it would have been harder to accept everything if I'd been asymptomatic like a lot of folks here.

Please remember that post-ohs depression is very very common. If you feel like it's a problem you need to contact your md and let him/her know - there's nothing wrong with getting medical help for this.
 
Thanks

Thanks

Thanks to all for your words of wisdom and encouragement, you're the only ones that seem to understand. I was hospitalized Monday with TIA symptoms I just got out today, and feel very much like I'm riding that rollercoaster. I'll tell my latest story on the post surgery forum.

Thanks,
Steve
 
Post surgery

Post surgery

Steve I was in the same boat as far as endocarditis, they couldn't work out how I got it. So it is one of those things that sits in the back of your mind, am I going to get it again, other than that though I don't dwell on my heart, I am fortunate I have no other health issues and have been advised my heart has made a full recovery. Like Georgia I had class IV CHF before surgery and I could tell I was going to die if nothing was done, I also felt much better with only a couple of days post surgery. 18 months on from surgery I have to look at my chest from time to time just to remind myself that it all really did take place. :)
 
Back
Top