I've crossed the line into severe and need to make a decision

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
Chuck C said:
But after that he uses glue to keep the wound closed. She told me that in many patients of his that she has seen, a year out from surgery they don't even have a scar.
Click to expand...
I wear mine with pride ... its a lifetime
1617095626098.png


three through the same place and "debridement scrapes".

everyone is born with no marks ...
 
pellicle said:
that's what I felt was the vibe ... baby
View attachment 887668
Click to expand...
You were right about sleep being irregular, even after coming home. I just slept for 2 hours and had to get up for pain meds, staying ahead of the pain. And here I am on the computer posting a message. I could not get to sleep until around midnight. I thought that once I got home, being so sleep deprived, that I would sleep for a long time. But, it is really hard to sleep when emotionally you feel like Rocky. I am so amped to be home and to be feeling so good, that I had trouble falling asleep.

Also, I am forming the opinion that it may be better for recovery to not stay in one position for 6-8 hours. That is a long time for the lungs to not be expanding fully. Perhaps it is better to take 1-2 hour cat naps and get up and walk around and do a few breathing exercises and then back to bed. In ICU I would sometimes have my nurse take me for walks in the middle of the night.

ICU NP, looking shocked to see me, with my nurse on day 2 of recovery going for a walk at 3am: "insomnia or just wanted to go for a walk?" as we passed by her station.

Me: "Both"
 
Chuck C said:
You were right about sleep being irregular
Click to expand...
I often say "I don't like being right" ... so here's something I hope I am right about.

Push through this:
  • don't "fully wake" when you wake, go back to sleep
  • if you need to go pee (from medications) do that, then go back to bed
  • put your phone in a different room (not by the bed) to reduce the temptation to look
  • avoid napping during the day but if you do, when you wake up, get up
  • hit the sack early
  • try really hard to re-establish rythums / habits / cycles

all of this is critical to your mental health

Next, consider doing something like sudoku or just practicing arithmetic. Do it mentally then do it on paper.

Best Wishes
 
I found sleeping in a recliner arm chair for the first couple of weeks much more comfortable, the first night I had at home trying to sleep in a normal bed was dreadful misery. Sitting/sleeping semi upright was far less painful.
 
Warrick said:
I found sleeping in a recliner arm chair for the first couple of weeks much more comfortable, the first night I had at home trying to sleep in a normal bed was dreadful misery. Sitting/sleeping semi upright was far less painful.
Click to expand...
I am very fortunate, in that my Sleep Number bed has the adjustable frame for the head and feet. It's just like a hospital bed, and I am able to adjust with my remote control while in bed to find that perfect setting. When I bought it years ago they had a special deal where you could upgrade to the adjustable for a reasonable price. My dad swears by his adjustable bed and pushed me to get the upgrade. I found I did not like it and have not used this feature since I bought the bed.

I am sure going to use this feature now, however and I'm so glad that I made the upgrade.

It is also really nice having the Sleep Number in which I can adjust the firmness. In ICU we found the perfect setting was at the 22% incline and the softest mattress setting. For me this was a game changer. I can attempt recreate that same sweet spot at home now.
 
Last edited:
Great report, Chuck. Glad you're home. Just remember if you push too hard, which are a likely to do given your personality – which I suspect is Type AAA like a few of us here – you may have a setback. Very common. You're doing a great job!
 
bizinsider said:
Great report, Chuck. Glad you're home. Just remember if you push too hard, which are a likely to do given your personality – which I suspect is Type AAA like a few of us here – you may have a setback. Very common. You're doing a great job!
Click to expand...
Hi Bizinsider,
Your point is very well taken. I am aware that this is probably my biggest risk, even if accidental. I almost got right out of bed this morning the normal pre-surgery way because I felt so normal. I caught myself before I did, but had I not caught myself I might have done some damage.

I have taken steps to really put the reins on. Even though I feel like I can do it all, I don't. An example: I have a two story home. The doctor said it is fine to go up stairs. Just listen to my body. I feel like I could bound right up the stairs as before, but I don't dare try yet. Instead, I made myself go very slowly stepping onto each step then pausing, then the next step.

I am following all of the guidelines they gave me and only doing activities which it says that I can do and following their timeline to the letter. Getting a setback in my healing is something which I want to avoid.
 
Chuck C said:
Hi all.

I have really enjoyed being here on the forum for the past few months and appreciate all the shared experiences and knowledge. I’m 53. My BAV and moderate aortic stenosis was discovered 20 months ago. I’ve stayed in the moderate range on my echos, with AVA 1.1cm2 on my last two, but then last week it dropped suddenly to .87cm2, crossing the threshold into severe AS. Both peak jet velocity and mean pressure gradient appear to agree, at 4.2 m/s and 46mmHg. I’m being seen by a very competent team at a top valve clinic. My cardiologist has told me that we can operate now or wait for symptoms- my decision. I am asymptomatic and have not experienced any slowing down. I hike briskly up a 1,200-foot mountain daily and keep a very good pace. Occasionally my friends and I all push for time and I beat them all pretty handily, so I don’t believe that I am compensating by slowing down my pace. I feel great and have a lot of energy. On the one hand, I want to put off surgery as long as possible. On the other hand, I find the conclusion of the meta-analysis published last year in JAMA Cardiology very compelling, showing significantly improved long term outcomes when surgery was done for severe AS patients before symptoms vs severe AS patients who were symptomatic. “Early intervention was associated with a significant reduction in long-term mortality (hazard ratio, 0.38; 95% CI, 0.25-0.58).” I other words, the long-term mortality was reduced by 62%, if the surgery is done before symptoms present, in this meta-analysis of many studies- I find this result very compelling: Natural History of Asymptomatic Severe Aortic Stenosis and the Association of Early Intervention With Outcomes

My cardiologist believes that I will likely start experiencing symptoms within a year- of course, no one can say for sure when. So, if I wait for symptoms, I can possibly put it off surgery for months up to a year and possibly longer with some luck, but that day is coming soon enough in my near future. Put it off as long as possible or bite the bullet and go with the data from the meta-analysis finding better long term outcomes doing it before symptoms and get surgery now?

I welcome all thoughts, suggestions, and recommendations.

Much thanks to all.

We have a very educated board here that appreciate details, so I am editing to add the following information about my condition:
No aortic aneurism: Max aortic diameter is 3.4cm
Preserved ejection fraction: Consistently 73% to 74% per echo and MRI
LV wall thickness 1.15cm, with LV mass in the normal range
Click to expand...


Good afternoon Chuck
I am glad your surgery had been successful and you are doing well.
I just registered at this forum today but have been reading the posts for the past couple of weeks. I have noticed that your cardiologist and your surgeon are at UCLA and had your surgery there too. I was wondering if you could recommend your cardiologist to us and share his name.
I am here because my husband may need to have an aortic valve replacement. He was diagnosed with aortic valve regurgitation two years ago and was doing well. Unfortunately he came down with endocarditis which was diagnosed early December. He went through six weeks of daily antibiotic infusions. The infection is now gone and his heart function and size within normal range but he ended up with a vegetation on his valve that consequently became an echogenic mass, and a mild stenosis and his regurgitation is now considered severe. We have only seen two cardiologists. One wanted to keep monitoring him. The second cardiologist who is at UCLA, suggest a TEE to confirm the size of the scar (approx. 1 cm) and possibly a valve replacement. We are so overwhelmed and need help! This is all happening too fast! We would like to have another opinion, and would welcome any recommendations for a third cardiologist in Orange County, Ca or Los Angeles.
Sorry this is my first post and I am not sure if I am posting my message correctly!
 
Denjun said:
Good afternoon Chuck
I am glad your surgery had been successful and you are doing well.
I just registered at this forum today but have been reading the posts for the past couple of weeks. I have noticed that your cardiologist and your surgeon are at UCLA and had your surgery there too. I was wondering if you could recommend your cardiologist to us and share his name.
I am here because my husband may need to have an aortic valve replacement. He was diagnosed with aortic valve regurgitation two years ago and was doing well. Unfortunately he came down with endocarditis which was diagnosed early December. He went through six weeks of daily antibiotic infusions. The infection is now gone and his heart function and size within normal range but he ended up with a vegetation on his valve that consequently became an echogenic mass, and a mild stenosis and his regurgitation is now considered severe. We have only seen two cardiologists. One wanted to keep monitoring him. The second cardiologist who is at UCLA, suggest a TEE to confirm the size of the scar (approx. 1 cm) and possibly a valve replacement. We are so overwhelmed and need help! This is all happening too fast! We would like to have another opinion, and would welcome any recommendations for a third cardiologist in Orange County, Ca or Los Angeles.
Sorry this is my first post and I am not sure if I am posting my message correctly!
Click to expand...
Hi Denjun,
My cardiologist was Dr. Aksoy at UCLA. 310-825-9011. I highly recommend him.
I am very sorry to hear about your husband's diagnosis and possible need for SAVR. You have come to the right place. There are members here with a lot of experience on the topic of valve surgery and you will find a group that is both knowledgeable and happy to help in any way that they can. This can be a very scary process, but here you will come to understand that it need not be such a feared operation. Generally, the risk of a first procedure is very low. The real risk is not getting valve surgery done when it is medically needed or delaying too long to get it done.
I had my procedure done 9 days ago and if you read some of my posts in this thread you will see that I am feeling great already.

Chuck
 
You must log in or register to reply here.

Latest posts

Back
Top