I have been reading this message board for a while now as I prepare for my aortic valve replacement, and thought it was time I joined the forum. I am not much for online groups or social media, but it felt very Important to join the forum to be able to thank everyone here for sharing their personal stories and experiences. Reading about your journeys and the full lives you are living has really helped me to come to terms with my situation.
I‘ve known about my BAV for 10 years or so, progression was very slow until the last two years when my stenosis moved quickly to moderate and then severe. Surgery is scheduled for Thursday the 1st, and the decision between tissue and mechanical is one of the hardest choices I have had to make-its not a choice easily undone. As a 58 year old female, in otherwise good health there is no clear cut right choice. Finally, after listening to my surgeon, my cardiologist and reading study after study, I have come to terms with my choice of a mechanical valve. Reading your experiences with warfarin has really helped me to be comfortable with this. There initially seemed to be no good solution-another surgery in my future or lifetime warfarin. My surgeon is leaving the choice to me, but felt strongly that given my life expectancy mechanical was by far the best option. He was upfront that in the future this may not be the case, but right now, based on the science and the data it is. His valve of choice is the Onyx, he has used it extensively over many years with excellent success so we will go with that.
I am still nervous about the surgery, and crossing my fingers that warfarin allows for a good quality of life (we travel and I love to exercise) but hearing from people who have been through this and come out the other side, and lived long and wonderful lives has helped so very much.
So thank you!!
Hi Lynn and welcome.
I just had aortic valve surgery 8 days ago and am similar in age. I'm 53. I think your surgeon was right about the mechanical valve and I think that you made the correct decision. Like you, no matter how many times I went over the numbers, I could not justify the tissue valve and I really wanted to justify the tissue valve, because my favorite activity is boxing and warfarin will mean giving up boxing.
We had some bumps in the road. I had to get part of my aorta replaced in addition, which was a surprise. I had some bumps in recovery also- atrial fibrillation. But my surgeon said that something like 40% of patients experience this and they know how to reverse it. It appears to be gone now, and I doubt that it will return.
Time in the hospital was not like going to Disneyland, but it really was not that bad. ICU is not fun, because you have a lot of tubes and wires connected to you, but it passes soon. Also, they should give you heavy narcotics for that part of it, and so it makes it not so bad. My advice is take them. Take the heavy stuff. They have something called a PCA- which stands for patient controlled anesthesia.
It gave me control over how much pain relief I got as I needed it. My PCA had Dilaudid. Trust me, this is the Michael Jackson level stuff. They gave me up to 6 pushes per hour in the day after surgery. I used it about 2x per hour- only when needed. But, it gave me control over a process that you generally do not have much control over. There was one time when the pain got bad, so I pressed it 3 times in that hour. No pain, no more. The next day they limited me to 2 pushes per hour and I only used it about 1x per hour. During all this time there were also giving me oxycodon, which is pretty strong as well, but not nearly as strong as Dlaudid.
They will probably not give you this unless you ask for this. I would tell the surgeon or someone on his team that you want one of these while in ICU. And make sure that they give you the good stuff, even if only for 2 days.
From my view, once you make it past those first couple of days in ICU, the rest is relatively easy. I was still given Oxy while I had the PCA, but then just Oxy + Tylenol. I had a lighter pain killer called Tramadol as back up for those rare moments when I needed a little more, but I rarely needed to use it.
I am talking a lot about pain meds, because, unless you think you are the type who struggles with addiction, you will want to stay ahead of the pain and this will make the experience much better for you.
The survival rate is very high for this surgery, so you will come out the other side. You get to sleep right through the hardest part. Wake up in recovery and legally be a junkie for a couple days and the next thing you know you will be on the road to recovery. Recovery has come so fast that I still can't believe it.
Please keep us posted once you feel well enough to leave a message on the board. You will do fine. You have lived with this BAV for for many years and this will now be a thing of the past. I feel no different on warfarin and, as many on this forum will tell you, we can live very active lives on warfarin.
Here is another tip- be your own advocate. Find out ahead of time the power structure of the ICU ward. At UCLA there is the nurse who cares for you. Above her is the charge nurse or senior nurse and then there is the nurse practitioner, who as at the same level as the charge nurse. Hopefully your own nurse will agree with staying ahead of the pain, and act as your advocate. But, there are some that think that part of their job in fighting the narcotic epidemic is to limit patients coming out of OHS. I also had one that did not want me to use very much because she said I would get constipated. Nope. Keep taking stool softeners and use a laxative or suppository if needed, but that is not a valid reason to limit the pain meds. If your nurse ends up being one of those anti narcotic activists, ask to speak to the head nurse or charge nurse. You can also ask to speak to the nurse practitioner. In fact, it is a good idea at every shift change to ask to speak to the nurse practitioner to make sure that she is going to help you stay ahead of the pain. At UCLA, she is the one in charge of what meds you will get. They are generally women who are old school "stay ahead of the pain" and you should get what you want from her if your RN is one of those anti narcotic types.
If the nurse practitioner also joined that "Let's work together to make ICU a narcotics free zone" club, ask to speak to your surgeon or a rep from his office.
I say these things because the night after surgery, before I knew the power structure, I got one of those nurses who thought I should have only a small amount of narcotics for fear of constipation. that was a very difficult night, and we did not stay ahead of the pain. The next morning I got a male nurse who was the opposite. He acted as my advocate. He got me a PCA and from then out it was so much better.
We will all be waiting to hear your good report when you come through and some fun stories. wishing you the best of a successful operation and a smooth recovery.
). Reach out whenever you feel the need. There is much wise counsel here.
