New Member - Valve repair/upcoming replacement

[Vinrics]

Thank god for this forum. New member here, I had open heart to repair a bicuspid aorta 33 years ago when I was an infant. Time has finally come to replace my aorta with a mechanical valve in the next 3-6 months. Recently found out this news (doctors always told me it would need to happen but there were no warning signs, condition has been stable for so long).

It’s been tough go since I found out the news. I’m an avid soccer fan/soccer player and the thought of not playing again has been tough. But I also realize that quality of life is important and I have my whole life ahead of me for my family and I. I’m curious to know how others coped with a mechanical valve replacement and limitations you faced? Did you have to give up things you enjoyed doing/if so what did you replace it with?

Cheers

 

[70sdiver]

I can only wish you good luck on your upcoming surgery. I had a valve replacement non mechanical . There are some great members here that have mechanical valves that are a wealth of information.

 

[dick0236]

I’m curious to know how others coped with a mechanical valve replacement and limitations you faced? Did you have to give up things you enjoyed doing/if so what did you replace it with?

It's been a long time since my surgery and I have a difficult time separating my pre-surgery life from my post surgery life........but I really don't think the OHS has had a dramatic impact on my life or lifestyle. I did not participate in "team" sports like soccer so playing contact sports was never an issue.........and it's hard to bruise or bleed fishing or playing golf......or having a few beers while playing poker.

 

[Superman]

I’ve have a mechanical valve since I was 17. I didn’t give up anything. I added a bunch of stuff. Some of which changes over time as I’m 50 now. But I bike, bike, run, coached my kids sports teams. I can’t think of anything I wanted to do but haven’t done because of my valve.

 

[ValveAdmin]

Welcome to the forum. Hope all is well with your upcoming surgery!

 

[Vinrics]

Thank you all for responding. I’m a bit nervous to go under the knife. Hoping recovery goes smooth. Glad to see people have had mechanical valves for quite some time. It fills me with hope as I’m a new father and want to be there for my family for a long time

 

[Midlo_dave]

Thank you all for responding. I’m a bit nervous to go under the knife. Hoping recovery goes smooth. Glad to see people have had mechanical valves for quite some time. It fills me with hope as I’m a new father and want to be there for my family for a long time

Good luck! I am in the same boat. Had aortic repair 37 years ago and now have been told it is time for a replacement. I will get a mechanical too. I am scheduled for surgery on Jan 23rd. Am terrified but thankful to read the positive outcomes on this forum.

 

[Dash]

You've got this! Nervous is to be expected so use this forum as your new-found family of support. It's not a quick process so look at every day as a little better than yesterday. It helped me immensely though my surgery. I had my BAV replaced 11 years ago with the "tried and true" St. Jude mechanical valve at age 41. I was very active, worked out 5 days per week, healthy, and like you, knew the day would come when that valve needed to be replaced. It's just a bit shocking when it comes sooner than you expected

One of the best things I did early on, per recommendations of this group, after recovery, was to get setup on Self-Monitoring and eventually Self-Dosing. Going in to get your blood checked on a monthly basis is fine if you eat and drink the same things consistently. Knowing how your INR reacts with YOUR lifestyle is your best friend. Everybody's INR reacts differently to food, drink, temperature, etc... By having the ability to test your INR under different conditions will give you the ability to manage your INR effectively. Your lifestyle should resume like it is today so life it to its fullest...

Good luck on your surgery. Wish you nothing but the best outcome and a smooth recovery!

 

[Vinrics]

Recently just had a bentall procedure on Thursday with a mechanical valve and graft to replace the aortic root. Was discharged yesterday from the hospital (which in my mind was crazy how quick the turn around in hospital is). Anyone have tips for recovering after post-op.

 

[pellicle]

I’m curious to know how others coped with a mechanical valve replacement and limitations you faced? Did you have to give up things you enjoyed doing/if so what did you replace it with?

Aside from managing my INR, no change, didn't give up anything.

Frankly I don't know where the doctors get their doom and gloom advice from.

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749?amp=1
We've got at least one member here doing jiu-jitsu.

Eat anything you want (don't drink grapefruit juice in large quantities)

https://www.valvereplacement.org/threads/foods-on-warfarin.888552/#post-916261
My most sincere advice is to get a mechanical valve unless you are contraindicated for warfarin.

Do (did) you have bicuspid aortic valve? If yes has anyone discussed future aneurysm possibility with you?

Best Wishes

 

[pellicle]

Recently just had a bentall procedure on Thursday with a mechanical valve and graft to replace the aortic root. Was discharged yesterday from the hospital (which in my mind was crazy how quick the turn around in hospital is). Anyone have tips for recovering after post-op.

ahh, well now that I see this I see my above is superfluous ...

recovery: just follow the directions, don't lift things (as per directions to not do so). Steps and walking ... do it.

after about 5 weeks of course you can act more normally but still no lifting things more than a couple of Kg

longer term your most important step for long term health will be proper INR management. Proper compliance can not be understated and its actually simple. I'm presently writing an eBook on this subject but for now here's a bit from that related to the above

_____________________​

Then there is this study: The influence of patient adherence on anticoagulation control with warfarin: results from the International Normalized Ratio Adherence and Genetics (IN-RANGE) Study (link)

We performed a prospective cohort study at 3 anticoagulation clinics to determine the effect of adherence on anticoagulation control. Patients treated with warfarin with a target international normalized ratio of 2.0 to 3.0 were monitored with electronic Medication Event Monitoring System (MEMS) medication bottle caps. Detailed information was collected on other factors that might alter warfarin response…​

​

Among 136 participants observed for a mean of 32 weeks,​

• 92% had at least 1 missed or extra bottle opening;
• 36% missed more than 20% of their bottle openings;
• and 4% had more than 10% extra bottle openings.

In multivariable analyses, there was a significant association between underadherence and under-anticoagulation.​

​

For each 10% increase in missed pill bottle openings, there was a 14% increase in the odds of under-anticoagulation (P<.001);​

​

participants with more than 20% missed bottle openings (1-2 missed days each week) had more than a 2-fold increase in the odds of under-anticoagulation (adjusted odds ratio, 2.10; 95% confidence interval, 1.48-2.96).​

​

Participants who had extra pill bottle openings on more than 10% of days had a statistically significant increase in overanticoagulation (adjusted odds ratio, 1.73; 95% confidence interval, 1.09-2.74).​

​

Conclusion: Patients have substantial difficulties maintaining adequate adherence with warfarin regimens, and this poor adherence has a significant effect on anticoagulation control.​

(re-formated for emphasis)​

So even when a clinic was involved we see this is no magic solution for proper patient adherence (commonly called compliance) with taking your warfarin and taking the right amount.

Taking your dose
To make sure that you take your dose you need a number of (let's call them rules) which work in synergy in order to remind you. I like to have three, but you can have more or less. I’ve found that three ensures a very low likelihood of failing to take my dose. Oh, and yes, despite doing this for over 12 years (perhaps because it's part of my life) I find that I still need all three now and then. Some suggestions:

1. Put your pills in a day marked pill box
2. Put the pill box in a place where you will notice it (kitchen bench where you often do something)
3. When you’ve taken a dose, leave the lid up (as a flag)
4. Pick a time of day to take them which fits your routine (for some that’s morning, for others that’s evening).
5. Have an alarm set on your phone to remind you (actively try to take the dose at that time, don’t just cancel the alarm. If the alarm is at an inconvenient time then think about that and change the time to a convenient one.

Best Wishes

 

[LondonAndy]

Welcome to the other side! My thoughts on recovery:

1. The body is amazing, and will be diverting energy from other parts to the wound to repair the damage done. However, the biggest user of energy is the brain, so you will likely find difficulty concentrating for perhaps even 20 minutes. Don't worry about it - all normal. Don't make any big life-changing decisions like changing job or moving home for at least a few months!
2. Sleep will be patchy for the first few weeks - listen to your body, snooze when you want. Use a recliner if possible, to minimise stress chest where they cut you open.
3. Minimise the risk of infection: don't share towels, have yours washed frequently, and in high temperatures. Make sure well meaning visitors wash their hands on arrival, and try and avoid them touching you.
4. Once the initial scar has sealed (about six weeks), apply Bio Oil daily to help reduce the scar. Mine became almost invisible, but it took six months or more.
5. Don't sunbathe for a year! Apparently it makes the wound permanently dark.
6. Get a CoaguChek meter to do your own INR testing wherever you are, with a finger prick of blood in a few minutes. See this "UK Regulator" report from 2014 on why it is better than only using a clinic. May need to wait until your INR is stable before the doc will let you!

 

[Chuck C]

Recently just had a bentall procedure on Thursday with a mechanical valve and graft to replace the aortic root. Was discharged yesterday from the hospital (which in my mind was crazy how quick the turn around in hospital is). Anyone have tips for recovering after post-op.

Welcome to the other side!

You're young, so you will likely be in a position to have a speedy full recovery.

Anyone have tips for recovering after post-op

1. I would walk walk walk walk. If they did not put any limitations on your walking, I would walk as often as you feel comfortable. I was told I could walk as much as I wanted and I walked my rear end off. Don't push yourself hard the first couple weeks, but gradually pick up the pace and start walking more briskly and further as the weeks progress.
2. Are they still having you do the breathing exercises with the incentive spirometer? Make sure that you do those as often as they tell you to and then some. It is really important to get those lungs to fully open up and back to full capacity.
3. Obviously, take your warfarin and any other meds. I would follow Pellicle's instructions above on how to do this and how to make sure that you don't miss a dose.
4. Get a home meter, such as the Coagucheck xs and home test weekly. It is really simple to do and will reduce your chances of having a serious event by about 50%.
5. Enjoy and celebrate every little victory in recovery. The recovery process can be kind of fun and rewarding. Follow your cardiologist's guidelines about when you can return to which activities, and enjoy the process of moving towards full recovery, as you return to 100%.
6. Hopefully they sent you home with some simpe exercises to do daily. They gave me a pamphlet with 8 or 10 exercises. Make sure you do those regularly.
7. Sleeping is spotty the first few weeks after surgery. Many find that a recliner it optimal for sleeping for awhile.
8. If they change your medications, by giving you a new one, eliminating one or changing a dosage, monitor your INR closely for a few days to see if the change had any impact on INR. Some medications can cause your INR to move significantly. This can cause problems if you go out of range and are not aware of it. So, test often at these times and adjust warfarin as they tell you to. Hopefully, you will eventually become self sufficient enough to adjust your own dose yourself when needed.

Please keep us posted on how your recovery comes along.

 

[LondonAndy]

A quick "PS" about walking: remember that when you stop walking your blood pressure will drop. So if you're walking and get into conversation with a neighbour and stand for a while there could be a risk of dizziness, which worst case scenario could cause you to faint in the early days. Otherwise walking is great!

(Solution: sit for the chat!)

 

[MIB]

Thank god for this forum. New member here, I had open heart to repair a bicuspid aorta 33 years ago when I was an infant. Time has finally come to replace my aorta with a mechanical valve in the next 3-6 months. Recently found out this news (doctors always told me it would need to happen but there were no warning signs, condition has been stable for so long).

It’s been tough go since I found out the news. I’m an avid soccer fan/soccer player and the thought of not playing again has been tough. But I also realize that quality of life is important and I have my whole life ahead of me for my family and I. I’m curious to know how others coped with a mechanical valve replacement and limitations you faced? Did you have to give up things you enjoyed doing/if so what did you replace it with?

Cheers

I'm afraid I can't help answer your questions. Today is only 12 days post-op for me.I just thought I'd say hi. Everyone here has been exceedingly helpful with info about this journey.
Cheers.