Thank You

[Lynn]

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!!

 

[user 16827]

Welcome, i often say this and it may seem odd, but enjoy and take in the whole experience.

if its any comfort, I travel a lot too and exercise a ridiculous amount, if you self test after the surgery
then its really simple.

good luck

 

[dick0236]

Hi Lynn and welcome to the forum. I hope your upcoming surgery goes off without a hitch. Stay tuned into this forum as it can answer a lot of your post-op questions.

I have been on this forum for about 15 years and have been taking warfarin for forty years before joining this forum. I was "blown away" by all the warfarin "horror stories" that some folks were posting, and still do, about that drug. My own experience is that warfarin is a predictable drug. Take it as prescribed, test routinely, follow a few "common sense" suggestions and the drug works as intended. Treat it casually, like we do with a lot of OTC meds and it probably will "bite" you.

I also agree with your choice of mechanical at your age........anything to keep a person off an operating table makes sense to me........especially in the senior years.......like me

 

[Lynn]

Thank you both, without hearing your stories about life on warfarin, I would have been much more concerned. I do have a RN and an Advanced LIfe Support Paramedic in the family, and they both feel warfarin is easy to manage, and haven’t seen any issues with it that cannot be easily avoided. I will set up home testing right away, and I feel with that I can effectively manage my INR. Cheers

 

[tom in MO]

Hi Lynn, Welcome. All will be well including you Vaya con Dios.

 

[Superman]

Welcome to the forum! No doubt it’s a pretty big speed bump on your journey, life goes on after. I’m 30 plus year Warfarin addict. I first got hooked on the stuff as a teenager. It’s never loosened it’s grip. At 48 now, it’s hard to fathom I’ve lived the vast majority of my life to this point ticking away and hovering between 2.5 and 3.5 INR.

I’m no star athlete like some of our members, but I’ve got a slow 25k run under my belt. I still can cover 3-4 miles at just under 10 minutes per, and I finish my workouts in the top 5 - 10% of Peloton participants. The people I pass don’t know I’ve had two open heart surgeries.

We’ve also covered much of the lower 48 states road tripping as a family. I just pack my drugs and testing supplies with the rest of my toiletries. No problem!

Keep us posted on your updates, and ask lots of questions!

 

[pellicle]

Welcome.

Its worth adding that you should pretty much be able to live as you wish (might want to drop the kickboxing tho), travel where and as you wish (especially if you are self testing) and pretty much eat what you want to.

Enjoy Life²

 

[Chuck C]

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.

 

[Seaton]

Welcome Lynn.
As you know, this is a great place for all things heart valve replacement (and beyond! ). Reach out whenever you feel the need. There is much wise counsel here.
Will be following your journey as things progress. Wishing you all the best for the days ahead and onwards.

 

[EMJEF]

Thank you both, without hearing your stories about life on warfarin, I would have been much more concerned. I do have a RN and an Advanced LIfe Support Paramedic in the family, and they both feel warfarin is easy to manage, and haven’t seen any issues with it that cannot be easily avoided. I will set up home testing right away, and I feel with that I can effectively manage my INR. Cheers

Hi Lynn,

I hope all goes well for you and you will soon be recovering from your op.
I am currently awaiting having my mechanical valve replaced for a new one (I have had my current one since I was almost 4 and am now 38 and have been through a pregnancy). I am extremely hopeful that having another mechanical valve will prevent the need for another replacement which is exactly what all of us want. I have put my surgery off for a few years (pretty much since my son was born 6 years ago) but am now waiting for a call for Pre op as soon as they’re allowed to have me in (Covid regulations). Management of warfarin has been relatively easy and I have self tested for about (well to be honest, I’m not even sure-but know it’s at least 15 years). There has been the odd hiccup along the way but nothing that has made me think that I wished I didn’t have to take it. Taking warfarin for the rest of my life is a small price to pay if it increases the chance of no further surgery

 

[Lynn]

Thank you all for your kind words, and most importantly for you advice and for sharing your lived experience. Chuck, I have been following your recovery and it seems to me you have done amazingly well. Thanks for the ICU suggestions, I have been dreading that part of the journey a little. A question though, do they have you on a beta blocker, and do you know how long you will need it? I was prescribed one once, and it was not a great experience.

EMJEF, it’s wonderful to her that your mechanical valve carried you through your teenage years and into motherhood. It’s very inspiring. If you can manage all of that , surely I can manage the pretty cushy life of a 58 year old.

Thanks again everyone, I will keep you posted once they let me connect back with the world. I”m sure I will have lots of questions.

 

[Luckyguy17]

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.

Welcome Lynn and thanks for posting. Best wishes for your upcoming surgery this coming Thursday and congrats on your choice of a Mechanical valve. At 56 in 2010, I chose a Bio valve and am now overdue for a 2nd OHS. There truly is no given on tissue valves and their longevity and my surgeon is now recommending a mechanical for my 2nd valve at age 67.

Am assuming you are getting this done at a Vancouver hospital?

Looking forward to some progress reports when you feel up to it, hoping all goes well for you.

 

[Lynn]

Luckguy, Surgery is actually at Royal Jubilee in Victoria, It is thankfully rated one of the best hospitals in Canada with a robust cardiac surgery program. Heart surgeries from all over the province are generally done in Vancouver or Victoria. There can definitely be challenges with the Canadian health care system (as with any system) but I feel very fortunate to have received such great care so close to home.

 

[kevanndo]

Hi, Lynn,
I'm mom to a 16 year old daughter born with a congenital heart defect, resulting in three open-heart surgeries (3 weeks of age, 6 years, and 9 years). She has been on warfarin since she received a mechanical mitral valve at the age of 9. I had heard so many horror stories about warfarin before her third surgery that I actually feared the warfarin more than the surgery itself. But as with many things in life, the reality is nowhere near as frightening as our imagination. I can honestly say that her childhood has, in no way, been negatively impacted by being on warfarin. We have self-tested weekly since leaving the hospital seven years ago, and aside from the minute it takes to test each week and administer her daily dose at 5 p.m., I never even really think about warfarin.

 

[Lynn]

Thanks for sharing kevanndo. Without all of you relating your real life experience wth warfarin, I think the valve decision would have been much harder. Your daughter is an inspiration, I have a daughter, (technically a step daughter so no genetic link) who underwent open heart mitral valve repair and some other minor repairs at age 5. She hasn’t needed any meds, but when I get cold feet I use her as my inspiration. She was so little. She is now a 25 year old school teacher.

 

[dick0236]

[QUOTE="EMJEF, post: 904616, member: 17510
I am currently awaiting having my mechanical valve replaced for a new one (I have had my current one since I was almost 4 and am now 38 and have been through a pregnancy). I am extremely hopeful that having another mechanical valve will prevent the need for another replacement which is exactly what all of us want..................... Taking warfarin for the rest of my life is a small price to pay if it increases the chance of no further surgery
[/QUOTE]

Hi EMJEF......glad to meet ya! Your story is amazing.....and should be very heartening to new people to warfarin. If a 4 year old can handle warfaring, anybody can. BTW, do you know the brand of the valve that you have had for the last 34 years. Please stay involved with this forum........there are a lot of "newbies" to valve replacement and warfarin and your story is truly uplifting

 

[EMJEF]

It was/is a 19mm St Jude valve. Gave me the largest they could at the time. My original surgeries were at Southampton General with Mr Monroe who, I believe, to have been one of the very best in his field. I’ll be having my current valve replaced at Freeman Hospital in Newcastle.