Does anyone have or had a loved one suffer from aortic stenosis?
Hello everyone,
If anyone has had a loved one with this condition and didn't have the value replacement, what did you experience? but also if your loved one has the heart value replaced what did you experience?
It's a serious condition and because my mom has weak lungs does not want to risk operation with general anesthesia or even the one where they go through the vein in the leg, to insert a valve. Sometimes she seem fine but then it starts to feel hot headed, I felt her forehead and it did feel hot to the touch, I took temperature.
One minute you're happy taking a breather and the next time you check something is wrong. I was writing posts here on this forum, happily replying to some folks, and the next thing you know it, something is no good with my mom. She's a tough cookie bringing up a large family with a small budget. My father working fingers to the bone. I feel so sad when I think of all the things she has done for me, rest of the family and now I see her in bad health, with me as the adult now thinking all of this.
My mother has been suffering from lack of sleep for 3/4 nights now, during the day complaining of feeling hot headed. I visibly see she struggles to breathe even with the least amount of activity. I fear it's the heart valve problem causing more problem now than the asthma. The blood supply is obviously a issue with a heart valve problem but I'm not sure if feeling hotter to the head has anything to do with it.
I told her so many times not to do much, ask me to do things when needed, other people advised me let her be independent as long as possible, all very well when you're not struggling to actually breathe through asthma and this heart valve issue.
I'm scared inside to tell you the truth, but I try to show a tough exterior, guessing it called denial of not wanting to see my mother suffer with these health conditions.
Most problems I can look up things to help, diet, etc. this aortic stenonis, there's nothing to cure it, no special superfood to help it, nothing. When I see her suffer, I close my eyes, with hand on my forehead, thinking to higher place to help, and thinking to myself, so sorry mom, I can't help with this one.
I was not long giving other people on the forum support about Christmas and loved ones and so forth. Now I'm asking this.
6 Answers
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I had an atrial ablation a few months ago. I had extrememly rapid heartbeats most of my life and as I got older, they got worse. Just on a chance I was having an episode when I had to see my PCP for something else. He did an EKG and sent me straight to a cardiologist. Bunch of tests later and I had the ablation. Minimal sedation, I was 'awake enough' make comments and react when the dr touched a spot and made my heart 'go bump". So far, it has been a game changer, I still have some moments when my heart WANTS to go into tachycardia, but it 'can't' due to the procedure.
I don't know that a valve replacement would be a lot 'worse'. You should have mom into a cardiologist ASAP.
Maybe a medication would help her--it kind of sounds like you're just letting her live with this (not being judgy--just saying). It may be a fairly small fix.
The past GB surgery was awful--but nowadays it isn't the huge incision that it used to be. I had mine out and was back to 'normal' within a week.
Biggest worry with any kind of surgery is the anesthesia. The anes doc will check mom out thoroughly before they do the procedure. I know this, cause my DIL is an anesthesiologist and she talks about the pre-op checklist she uses. She has turned down people due to health issues she feels are possible probllems.
Mostly, mom needs to see a Dr., like yesterday. After learning what is possible and doable, then she can make a decision that will be best for her.
I wish you luck in this. It's mom's decision, not yours--sooo....fingers crossed you can help her.
Sorry to hear about your condition too. I'm glad you were able to get good help to improve you condition, that's really a great to hear people's live changed through the right help.
I should have explained our situation better, we're on 6 monthly check with the consultant cardiologist at the hospital and anything happening between he's asked us to call his secretary.
The loss of sleep and the hot feeling to the head are the symptoms at the moment. The doctor asked us to look for feeling dizzy while sitting, chest pains, shortness of breathe. The shortness of breathe is more likely the heart value condition than the asthma, because even after taking asthma inhaler, it does not stop the shortness of breathe for a long time.
My mom has been given the options from the cardiologist and I've explained on top of this. Explained the TAVR procedure. My mom has multi valve issues, some issue with the Mitral valve too. They said they need to check if my mom is even viable for this procedure due to other valve issues and other pre-qualification tests.
I explained the options to her, the cardiologist has explained, she doesn't like me talking about it and thinks I'm trying to push her into having it, I explained this condition will not improve, without this procedure. I could not say much more to her, because it upsets her.
I think as you said it has to come from her in the end. Thankfully, She still has the capacity to make these decisions herself, but in my other question, I discussed some very early signs of cognition issues.
My mom is in the category of not being able to have a General Anesthesia because she has weak lungs, this has been proven in previous breathing tests at the hospital. If she was to agree to TAVR it would have to be under a mild sedation, or local anesthetic.
I wish it was more of a joint family decision but if you've read my first post, that's not easy for me to initiate. After seeing how other patients have improved from the TAVR procedure, I'm mostly for it, as it can drastically improve quality of life and most likely longer life too.
Thanks Midkid58
It may be difficult for those who are younger to understand, but some of us in our 80s are "ready to go" if we are taken. We have lived long and content lives, but the future ahead as Riverdale's post will remind us is frought. I have zero fear of death, but do fear what will lead to that death and how slow and torturous the path may be.
Leave the decision in Mom's hands. Here there may be dozens of people who had either a good or a bad experience (and as a cardiac nurse I saw many of each), but it won't be your Mom's experience. She may fly through easily and feel well, or she may not.
I sure wish you both the very best. Encourage Mom to see her cardiologist, discuss her symptoms, ask what medications may be of help to her, if any, and be supportive. Listen. Try not to solve her issues, but ask her open-ended questions such as "I am sorry to hear about this. Did you ask your Doc? What do you think might help. I am always here if you need to talk."
Listening to podcasts on my little tablet is a boon to me on the occ. sleepless night. It's easy to work, and puts me right off to sleep. Those of us with heart issues (I have fib) can become very "conscious" of that old ticker. Another voice helps.
I sure wish you both the very best. And remember, let Mom make her own decision. My very best of luck goes out to you.
I can't push her to have the operation to improve her health (possibly) and on the other side the doctors say it could aortic and mitral valve too, plus the also talk about the risk, as if these decisions were not enough, my mom is also apprehensive about getting an type of operation at her age 84, with all her additional complications, previous hernia problems of operation in the 70's, asthma and so on. Even the TAVR type procedure.
The TAVR looks so easy, so quick, I understand patients are out from the hospital in a day or so, knowing all this it just feels like everyone should tell their loved ones to go and have it, but it's not my body, plus I can't encourage her because she doesn't even like talking about it, gets upset and ask me no to mention it again.
I wish the best for you. I hope your mom is as comfortable as can be.
Thank you.
Just today I asked my mom she should cut down on activities, she got upset, telling me it's nothing to do with how much I am doing, even saying can you monitor yourself when you are doing things to see if it triggers the hot feeling to the head. She keeps getting upset at me even saying to monitor yourself. I wanted to see if if she's sitting in one place for long period, if the symptoms settled down, due to less stress on the heart.
She's still says unable to sleep properly for many days now, maybe a 5/6 days. This pattern has never been seen before, no matter what kind of health issue she said she had. So I'll be making a phone call to the doctor tomorrow and see about this. Sleep we're all told helps heal the body, so it's a worry. I'll see what advice the doctor has tomorrow.
Thank you for sharing.
My ex-MIL had the minimally invasive TAVR procedure. She stayed overnight in the hospital although initially they were going to send her home with one of her adult kids staying with her.
Why is she reluctant to do that procedure?
My mom has not had good experience with operations in the past, when her lungs were not weak, she had an op to remove the gall bladder. but the incision is right across her entire stomach, huge, and I think over the years it has ruptured internally and she now has an incisional hernia that causes her many problems, a big bulge at the side of the abdomen area.
So I think part of the reason is just fear of getting it done, and fear if something goes wrong, plus fear of ending up with other complications. The TAVR looks so simple when watching the youtube videos. Also see my reply to Riverdale above.
I'm of course fearful of something not going right, especially if I encourage her to have it done, then feel guilty if some got worse. However, my mom made the decision to not have the procedure, even though it is fairly straightforward, I can't push her and the same time I'm seeing so many people have a better quality of life by having it done. Our consultant at the hospital also said there were problems with the mitral value, all of this add further uncertainty and fear. I guess ultimately I have to let he decide.
I have a large family but they seem completely oblivious to what's happening, and I and them are not on speaking terms. One sister come to the house every now and again, she my mom is fine from the outside, and tell the other siblings everything is fine, but I'm the one that see's her struggling every day, and it's even hard for me to see her like this, have this condition.
Thank you for your support BarbBrooklyn.