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3 mo window for aortic valve replacement and I'm freaking out
I'm new to this site and am looking for some tips? Maybe? I don't really know.
My husband is 34 and has Aortic Insufficiency. He went to the cardiologist yesterday and was told the window for the valve replacement should be the next 3 mo.
We knew this was coming for a long time. The cardiologist even said, when we first started seeing him, that it was probably going to be around 35 that this would happen - based on the rate of regurgitation and heart ***********.
I'm freaking out. We have two children - 8&7. When they were babies (and I'm talking 1&2) I felt less worried. If we lose him on the table, it's easier when they're little and won't necessarily remember him. Now they're older.
I know I need to think positive thoughts. The hospital does these all the time. 2.3% mortality rate. BUT what if he's in that 2.3%?
I know I need to be the strong one. I know that I can't tell him about my fear. I know it doesn't do any good or serve any purpose.
I'm not a woman of faith (tried a few and they don't stick). I don't have really any close friends besides my husband. My family is **** and I haven't talked to them in years. His family thinks that if he walks for an hour a day it'll all go away.
How do I cope?
What if he dies? What do I tell my kids? His family?
How do I keep it together long enough to get through the CT, Pre-Op, Surgery, and hospital stay?
I'm just lost.
AHAASAKatie, July 16, 2020 9:17am EST
Good morning, I am so very sorry that this is happening to your family. The fears and concerns you are experiencing are totally normal, I think. In a situation like this, knowledge is power and I am sharing the information we have regarding heart valve surgery and treatment options.
In terms of what to tell your children, that is a personal decision of course. I can tell you what I have done when facing a few truly scary situations. Be honest (to an age-appropriate extent) and keep answering their questions until they stopped asking. That is the clue that they have enough information to internalize and while they might come back to you later with more questions that are hard to handle, you will have earned their trust by sharing the truth upfront.
Please know that you are not alone. We strive to be a warm and welcoming community. I expect throughout the next few days you will get several posts from HV survivors or caregivers with other suggestions and information.
TomBroussard, July 16, 2020 10:42am EST
Hello, I am so sorry for this to happen to you and your family! It is never easy (and the natural fear that comes with it) to come to grips with health issues at any age! I had NO health issues (that I was aware of) ...thin, fit, exercise...but at 59 years old, I went from "perfect" to much less than perfect! Open heart surgery with a quadruple bypass and a new aortic valve replacement was the start of my health journey...one stop along the way was a TAVR aortic valve replacement three years ago.
I really didn't know much about my heart...but I learned a lot about heart health including trusting my doctors and surgeons. That did a lot to beat back my worry and fears about heart surgery. Please stay in touch with all of us...we all have our stories and share them as best we can to help support those in need. I am sure you and your husband will do well…waiting is always the worse! Take care! Tom B.
AmbassadorMR, July 16, 2020 12:46pm EST
First off, your fears, anxiety and concern are not irrational or unreasonable. As a heart valve replacement patient myself (aortic valve replacement in 2012) I know where our minds take us whether we are the patient or the caregiver. It isn't useful to just tell you not to be afraid and everything will be fine based on general statistics and outcomes. This is your husband and confidant and you have two young children who rely on both of you. Walking or hoping this will go away will not change the reality that defective heart valves must be repaired or replaced and it's only a matter of when it must be done not if.
Having said all of this which you already know, the strategy that helped both me and my wife to cope was to immerse ourselves in learning all that we could about why heart valves go bad and what the newest and best procedures are to address the problem. This is where your trust level in your cardiologist and surgeon are most important. Do you have a good relationship with them and have they fully explained to your satisfaction what your husband's valve issues are and the procedure that they are recommending to fix it? Let us know what the plan is and what valve type and surgical approach is that they will use. At his young age if he is otherwise strong and healthy overall, then the greatest likelihood is that he will tolerate all of what will be necessary to correct the problem, recover from the procedure and become the healthy husband and father that the family needs him to be.
Don't hesitate to maintain this conversation with us here on the support site. We've been where you are and we can help support you and your husband as you face the stress and challenge of getting this procedure behind you. Give us updates and new information as it becomes available and we will do all that we can to help you through. That's why we are here. I send you all the strength and resolve that I can muster as you move ahead in the weeks and months to come.
AmbassadorR, July 16, 2020 1:45pm EST
The thought of heart surgery is quite scary, but the truth is these days with today's technology it quite common and quite safe. I understand your fears. I had aortic valve surgery a few years back and was very scare about the entire process, but the more I learned, the more I spoke with the doctors and nurses, the more confident I because, while there are risk in any operation, the success rate is quite high. Try and take some comfort in this. Your husband is young so that is a big factor that is in his favor. I was 61 at the time of my operation. If your husband is otherwise healthy that is a big plus for him too. The key is to stay as healthy as he can, as this will made surgery much easier, as well as his recovery.
Some of my fears came from knowing very little about the process. As I learned more about what was ahead of me I was able to relax a bit more. I know you are worried about the 2.3 precent rate, but try and think about the almost 98% success rate. This means something. I remember talking to my sister about my operation and she seemed quite cavalier about it, and I mentioned this to her. She responsed, "No, i'm not being cavalier at all, but if you're going to have something that is going to make you better then I am all for it." This is what is going to happen to your husband. He is having a process that is going to make him better. Take comfort in the fact that you two were on top of this enough to have him checked out and now are going to resolve the problem. You're two of the smart ones.
The responsibility of a caretaker is a tough one. I felt sometimes it was harder than being the patient. I was thankful for having good care. Use the site as often as you need it. All the ambassadors here have been through some type of heart surgery and speak from experience. They are also a compassionate group who will listen. This experience you are going through can be a lonely one despite having a support group. Trying to stay positive will not always be easy, but as you learn more about what you will go through it will become easier. Keep us posted, and know that we are always here. Don't hesitate to use this site. You'll be in our good thoughts!!
JamesPL, July 18, 2020 9:23am EST
Your reaction is perfectly natural and is the same as anyone who is about to undergo heart surgery especially for the first time. I had the same panic and fear prior to my own open heart surgery. I can only echo what others have said especially AmbassadorR. Today's technology is amazing and we are treating people successfully in ways no one could have even imagined years ago. That technology is always improving. My cardiologist has told me many times that the advancements we are seeing not only in surgical procedures but in medications are revolutionary. Prior to my procedure, my surgeon sat me down to show me the problem areas. As I was in an emotional panic, he was discussing in specifics the areas he would address and how he would approach it. This helped me a lot as I took comfort in the fact that he seemed to be on top of his game. Educate yourself as much as you can and talk to his doctors and this will help calm your fears.
I also agree about the smoother recovery for someone who is otherwise healthy. I was told this before I had my surgery. The recovery is a months long process but if he goes through the cardiac rehab program and then continues to exercise afterward, he will gain his strength and his heart will also get stronger as a result. Eventually he will return to his normal way of life but he should continue to exercise to maintain his health.
I wish you both all the best!
amandac88, July 22, 2020 6:49pm EST
Thank you all for your kind words. Reading your responses really did calm me down, and reassure me.
We have a good relationship with his cardiologist - we've been seeing him for about six years now. I take solace in the fact that he's written a few textbooks, so I'm assuming he knows what he's doing.
At this time my husband is having really bad anxiety. He is unable to sleep at night, and his ADHD (diagnosed) is off the charts lately. I know exercise will help with this, but he's reluctant. Also - it's hot as heck where we are right now.
On 8/10 he has his CT scan, and we're still waiting to hear from the surgeon's office for an appointment. If we don't hear by Friday, we'll be calling them.
In addition to all of my previously stated worries, I'm worried too about the 'rona. I'm a teacher, and we don't know what the fall is going to look like yet; my kids' school hasn't decided on a plan yet either. I'm worried of having him at home post-op and having to go to school (both me and the kids) and bringing home the virus. I already disinfect everything like crazy and we are very diligent about hand washing, social distancing, mask wearing, etc. I know we're taking all the precautions, but I'm still worried. I'm hoping we'll at least start school in a distance learning format, where the kids and I can work from home and he gets stronger.
If any of you have time, I have a couple other questions. If these are easily found on a website, please feel free to whack me over the head with it.
1. As far as food is concerned, post-op: will I need to make soft, bland foods at first? Will he be able to take only liquids? Should I start finding a protein shake that he likes now, to aid in nutrition post op?
2. With the coumadin, is it wise to have all of the blood clotting things on hand? Those special bandages and pastes, etc.?
3. Should I sleep in a different bed the first few weeks?
Thank you all for everything!
JamesPL, July 22, 2020 8:25pm EST
I'll do my best in trying to answer your questions from my own experience. I had a quintuple bypass so some of the recommendations might be different for your husband's procedure but...
1. I was told and in fact encouraged to eat whatever I wanted for the first month after I got home. They said it's more important to gain my strength and heal and worry about the healthier diet afterward. The funny thing is I knew of at least two others that went through the same procedure and told me they only wanted to eat cold fresh fruit and that was all they could consume. It was very different for me. I had no problem eating whatever I wanted.
2. I was on a different blood thinner but I have found that whenever I cut myself, I do bleed more than I had in the past but it has never been excessive. That said, it's never a bad idea to have all those items you've mentioned on hand.
3. My wife and I slept in the same bed from day one without issue. It could be difficult for your husband to get comfortable because he has to be careful about excessive movement to his sternum until it heals. With that in mind, I had a lot of difficulty sleeping on my side because of the movement in shifting caused too much pressure on the sternum. I found it best to prop up pillows underneath me and sleep on my back. Laying flat was dfficult to do all night.
Hope this helps. Good luck to you both!