Robert's Journal

@Adam is it not possible to send members on here personal messages that are not automatically sent out to the public? There is some information I would like to provide but without sharing it with everyone. 

I would appreciate any comments in regards to medicine for heart arrhythmia. I am currently on Amiodarone but would like hear what other people are using and how effective it is and what else it might affect like heart rate, etc.

Hospitals seem to have a hard time reading my blood pressure. I had a colonoscopy today and it took them a few times to read my blood pressure at admission. Blood pressure was normal. After the procedure, they wanted to read it again. They tried about 10x with no success. Changed arms and cuffs. They finally gave up.

I had a similar issue when my cardiologist sent me to ER. The person who was taking the vitals finally called another person. Then they brought in another device. Nothing helped.

I do have constant AFib and my pulse varies every few beats. Maybe that is throwing things off. But has anybody else experienced this.?Hospital stuff seem surprised that they can't get a blood pressure reading so it doesn't seem normal even if you have AFib.

I have some bump in the middle of my chest. It's about 1mm wide, about 5mm long and sticks out about 1mm. It gets nicked once in a while and then bleeds. No big deal but I wonder what it is. It seems to be exactly where two ribs come together. As I move my finger across it from one side to the other, there is a bump (up, then down). So it's not that the ribs are misaligned (in which case it would just go up or down, depending from which side you move your finger). Could it be the wire that holds the ribs together? But why would the 5mm part be vertical (going up-down)? I would expect it to be left-right. One hole in the rib on the left, one hole in the rib on the right and then tie them together with a wire.

I had a couple of OHSs about 2 years ago and I was just told that I need an ablation surgery which will probably happen mid to end of this month. Obviously, this is going to be a much easier surgery than OHS. However, I am looking for some input on what to expect. I was told the surgery itself will take about 2 hours. I will be in the hospital for a couple of days. Then I need to take it easy in regards to walking and such for about a couple of weeks due to the incision in the grown (I would guess more like a few days). So some concrete questions are:

* What kind of tubes and wires will I wake up to?
- Emergency electrical wires to the heart?
- A tap into my neck to draw blood (I like that instead of being poked all the time)?
- A tube up my private part to pee?
- A drainage pipe to the heart/lungs (no big deal but that one isn't fun to pull out)
* What medicine did you have to take? I was told I will be on some (toxic) medicine for a couple of months to control flutter.
* What is the actual recovery time? I have a big/long trip coming up. The surgeon says it should be fine but I would like to get some input from people who had ablation and traveled (~30 hours trip and hot climate).

That's probably a bit off-topic but one of our big customers is Medtronic. When I got my first mitral valve repair they put a Medtronic ring in. So I designed this shirt to show my appreciation (I know their dedication as I have worked on the technical side of the healthcare business pretty much all my life). I am not much of an artist but if someone has some ideas for improvement I certainly would appreciate it. The idea is using the Intel logo "Intel inside" but with a heart and of course Medtronic but I am not stuck on any particular design.

I just saw this picture from @Cathleen Wee with this tasty food. I made some cheese quiche yesterday and with the leftover dough I made some very simple pizza. When I took it out of the oven I realized it was in the shape of a heart...

Today was my first day back to work, i.e. 12 weeks after my second mitral valve surgery in 2022. It's good to back plus my PTO was about to run out anyways. Interestingly, the company asked me to provide a "Fitness for Duty" certification (a form from the insurance company) from my surgeon. I thought this was only necessary if you want to return earlier than the suggested recovery time. It's a minor thing but did others also have to submit such a form?

And I baked some bread the day before returning to work.

Two months after my second OHS I started using power tools again. I had to create a platform with standoffs for the cows "tummy" to accommodate the short flowers. Now you can actually see the flowers I had to use a jigsaw and jigsaws aren't good right after surgery due to the vibration. Same goes for the power drill in hammer mode I used the same day to install security cameras, mostly to see where pupper is in our backyard. My chest felt the same the next day so I guess it was ok. But don't do this until at least 8 weeks out or when your surgeon says it is ok (same goes for massage or anything else that vibrates your chest).

I had my second mitral valve surgery just short of 8 weeks ago. I was planning to visit my parents and brothers overseas which is about a 10 hour flight. However, supposedly for 3 months after mitral valve surgery one should not stay over 2000m or fly more than 4h. I will check with my doctor, too but what were you told by your doctor?
Update: My surgeon says it's ok to fly 10 hours but I am still interested what others heard. 

Just as a reminder, there is A LOT of information in the learning center. I am guilty of not consulting it enough myself. I wish as people compose message it would show links to the articles in the learning center. And maybe people can contribute/add information to those sites, kind of like a Wikipedia.

https://www.heart-valve-surgery.com/learning-center.php

Website Improvement: "got a new guestbook post" & "posted an update".

So many messages on this forum have no context because they are a result of updating ones history or responding to some other message on another platform (Facebook?). I am a member of a bunch of forums and all of them start with an initial question with answers listed below. It would be great to have this forum structured in the same way those other forums work, i.e. there is one initial thread and then "below" are all the responses to that original post. Just my 2 cents...

For my first mitral valve repair the surgeon used an annuloplasty ring from Medtronic. Yesterday I got a letter and apparently for my second mitral valve repair the (other) surgeon used an annuloplasty ring from Abbott. I know sizing of the ring is the most critical part but I have never heard or read anything about the difference/performance from the different manufacturers (unlike for the valves where the bileaflet valve from St Jude seems to be a favorite). Are there any differences between the manufacturers that at least in certain situations can make a difference? Not that it matters to me anymore at this point but I am just curious and maybe it might help others.

I got a big early Christmas present I had my mitral valve surgery 10 days before Christmas performed by Dr. Luis Castro at Sequoia hospital. I scheduled it so it would be after Thanksgiving and before Christmas and within this year as I had the same surgery earlier this year (not by Dr. Castro), hence for insurance purposes it was buy one heart surgery, get one free Back in February they kept me for 7 days because my heart wouldn't beat by itself for the first few days. This time it was all good and they let me home after 5 days. Dr. Castro also did a great job in actually repairing the valve so that was a relieve. Pain was minimal so I just got some Tylenol the second day after surgery and nothing after going back home. Everything went really great and so I was able to join our yearly family Christmas celebration with close to 50 people. What a Christmas present I am so thankful for the great surgeons out there and for this forum for all the support. Merry Christmas and a Happy New Year!!!

Do most people these days do the INR test at home? If so what is your experience? How often do you test at home? How often do you get the INR tested in a lab? What is your cost? It seems like around $700 for the device and about $6/test.

PS: I read the basic info here: https://www.heart-valve-surgery.com/learning/mechanical-replacement-inr-home-testing/

There are multiple companies creating mechanical valves. Are there any mechanical valves preferred over others and if so why? As for the type of mechanical valves, I think the caged ball valves are not used anymore. So that leaves the monoleaflet valves and bileaflet valves. It seems everyone is using the bileaflet version probably due to blood flow. As for companies, I am most familiar with Medtronic as we work with them. Any input is appreciated.

https://www.heart-valve-surgery.com/heart-surgery-blog/2007/11/05/heart-valve-manufacturers-who-are-they/

Pacemaker after surgery.
When I had my mitral valve repair and maze procedure I apparently was on a pacemaker for 5 days. I only learned about this when the surgeon came and turned off the pacemaker after the 3rd day and had to turn it right back on. The next day the same thing happened. Only the day after that I could go off the pacemaker (they left it on as a backup and it kept zapping me every 10 minutes or so until they made several adjustments).
I will have another surgery next month and supposedly my heart is "tired" (low ejection rate). So I am a bit worried about having the same issue again. The PA of the last surgeon I talked to said I might require a permanent pacemaker. Has anyone had to go on a permanent pacemaker after surgery and how did that go, affect your life afterwards, etc. I am not doing crazy things but I am a fairly active person (almost daily strenuous exercise, walking the dog for an hour, occasionally hiking, skiing in the winter, etc).

Blood Measurement Device Cost.
With a mechanical valve you are supposed to check your blood to adjust the medicine/Coumadin (blood thinner/anticoagulant). You can do this at home with some instrument. I assume it is cheaper and a lot easier than going to a doctor's office. But how much does such a device cost? Are you purchasing it and then pay for the "test strips"? Or are you paying for each measurement? From your experience how much do you pay per year? Obviously, it depends a lot on insurance so if you can include some information about this that would be appreciated.

Mechanical Valve Or Pork/Cow Valve?

I will have my second open heart surgery next month. My surgeon tells me I have approx. a 70% chance that the valve can be reparied. If not, I have to decide between a mechanical valve or a pork/cow valve. I understand the differences. With a mechanical valve I need to be on warfarin for the rest of my life, poke my finger to get measurements and adjust medicine, Warfarin supposedly kills rats by damaging their liver (not sure if that is a concern if your liver and/or kidney is already bad), etc. My cardiologist calls it rat poison for a reason... On the positive side a mechanical valve probably will last you for the rest of your life.

With a cow/pork valve you probably have to "fix" it after 10-15 years. For younger patients this time range is on the shorter end due to the immune response. For older patients it might go beyond 15 years. A new valve can possible be inserted through a vain rather than doing open heart surgery again. But FDA might deny that based on long-term results. A second valve (which would be put over the first one) will also reduce blood flow. On the positive side it doesn't require Warfarin.

I am pretty much at the age (50) where there is no clear decision. I mostly have a desk job (engineering) so no risks there in regards to blood thinner. I do ski and go down double black diamond runs without helmet. But I only do this under good snow condition and because I ski without a helmet I am actually extra careful. I don't do crazy jumps or anything like that. I am also on a latter quite a bit for decorations (x-mas, Halloween, repairs, etc). I also use circular saws, drills, etc to create things. While I do hurt/hit myself once in a while (bruises and such) I never had any major incident. That includes the time since my last surgery and when I am still on blood thinner. So I feel like I can handle a mechanical valve but I would like to get some input from people who had to make the same decision.

Can you rate surgeons? I can only find "recommend me" and only for some surgeons. Is there no option to rate the surgeon, rate the preop service, rate the postop service, rate the success, type of surgery done, etc? Then people can search for something like a search for average x stars, location within x miles, number of reviews, type of procedures, how many surgeries done per procedure (maybe I am pushing it here), etc.

How do I post surgeon reviews? I did search for surgeons on this website. Some have a "recommend me" button but others don't. However, even the surgeons without a "recommend me" button have reviews. So somehow it is possible to review them. I just didn't figure out yet how. Any pointers are appreciated.

How do you subscribe to this community either a) for all new posts b) for answers to my posts, c) any posts where I was mentioned and/or d) any posts that I responded to? I searched but couldn't find anything about subscriptions. I do think during sign up there were some options and I believe I clicked on getting immediate updates.

How does this forum work? Going through a bunch of posts it seems the posts with white background are original posts and the posts with a blue background are responses. However, I see a lot of white/initial posts that seem to refer to some other posts.

Antibiotics after heart surgery:
I went to Stanford yesterday for a consultation for my second mitral valve surgery. They told me that when you have any artificial part in your heart they recommend taking antibiotics. They told me in my case I should be on antibiotics because I have an artificial ring (and artificial/Cortex cords). If for my second surgery I will get a mechanical valve I definitely (my words) need to take antibiotics. Is this really true? I get this argument if you do some dental procedure, etc. but being on antibiotics all the time sound strange. There are issue with people getting resistant to antibiotics indirectly (meat consumption from animals treated with antibiotics, etc) so should I really take antibiotics, especially if I chose to do a mechanical valve?

I had a mitral valve repair earlier this year which was done with open heart surgery. I need another repair or replacement soon. The recovery is not something I look forward to (using a commode and people walking in on you, sleeping on your back, getting in/out of bed, not driving a car, not lifting more than 5lbs/arm, etc). So I was looking into minimal invasive surgery or robotic surgery (I excluded this the first time because it would have required long travel to get to the surgeon I wanted). I just saw a surgeon yesterday and he said for a second surgery only open surgery is an option because of the scars from the first surgery. Is this the common understanding? If so, I would assume that if you had a minimal invasive surgery before you still would need open heart surgery because you still have the scars on your heart. Or would the scars have been smaller allowing another minimal invasive surgery?