Kelley's Journal

Kathryn Winters  Kelly, I had my surgery in January 2102. I have a mechanical aortic valve. I home test my INR. I too have trouble sometimes with my level. Yes, I use shakes. It is hard to get used to because it is bland, but I use frozen blueberries, greens (Organic Girl Super Greens and Protein Greens), Native Organic Hemp Protein powder and the other thing I add is a 1/3 to 1/2 scoop of Amy Myers MD Leaky Gut Revive which I order form her website. I had many problems after my surgery and ended up at the Mayo Clinic where they diagnosed me with Celiac. I have religiously avoided gluten for 5 years now and I also have to be very careful about dairy. It causes me problems digestively if I eat too much of it. Because of the Celiac I started to see a nutritionist and a functional medicine doctor and started to understand my digestive system more clearly. Specifically damage to the lining of my small intestine affects absorption of nutrients that had caused me a whole array of problems. As a result of understanding that for myself, I am much better off now, but I still have occasional issues which is why I add the leaky gut revive every day. Basically I feel like the absorption in my digestive system affects my INR (and many other things). So, I have to pay close attention to what I am eating (all land animal products affect me adversely), any over the counter medication (I just try to take nothing at all except my warfarin), environmental allergies affect my digestion also. So if there is anything that I know is affecting my digestion, I can count on my INR being a little off. The shakes and the Leaky Gut Revive really help me keep it in check. That and drinking lots and lots of electrolyte water for some reason (like Smart Water). I can give you my email if you want to communicate that way about this subject. I know it can be frustrating!

Kelley Turnbull  Celiac is tough. My girlfriend has it so we have to prep lab where we go to eat to ensure the restaurant can accommodate. I live the idea of a shake just not sure how to gage measurements. I guess it’s trial and error. I do no have a tester for INR

Cathy Zuber  Hi. Coumadin , I think, has a goofy personality. Weather can affect it, antibiotics, flu, cold, and..just life!! Hang in there. Levels can do that...

Rita Savelis  I second Cathy. The nature of INR is that it goes up and down and it varies because of so many variables. You can't control all of them. Your INR will spike, you change your meds (a tiny bit) and it will spike in the other direction. Travel, illness, other meds, alcohol... life.., green tea, cranberry juice are just some things that may affect it. Hang in there.
I am not careful with food intake. How can one really control the amount of vitamin K in one particular salad leaf? We can't. It varies.
I eat everything , and don't look at amounts, and my INR finally got more stable (after about 6 months). But it does spike and I carry on and have learned that even if I don't change my meds, it will go down on its own. This does not mean I don't keep testing, but I eventually found a dose that generally works for me. So I vary it with tiny tiny increments when my INR changes (my present dose is 3 days of 8 mg and the 4th day of 10 mg).

I truly wish someone had told me that INR takes a LONG time to stabilise and will continue to vary and that it is okay, as long as you are a responsible patient and continue to test and be aware.

Take care.

Kelley Turnbull  No alcohol or cranberry juice. I don’t have a cold etc. I use the same bowl for my salads at lunch and fill it with pretty close to the sane amount every day. Maybe s bit of stress and that may spike it. Very weird. Thanks all for the input.

Soggy Rodent  Ugh! That sounds so painful! My scar still hurts after 9.5mos. Found out recently it had keloided. Is ur scar dark, raised, and tender? U may want to get a referral to a dermatologist or cosmetic surgeon.

Catie B  So sorry that happened, Kelley! And that this has affected your ability to work.

I didn't have that complication. But I contracted a small blood clot in my arm and cellulitis from a badly placed IV. I was on warfarin several weeks for afib, and it took weeks for the clot to dissolve/heal.

  Hi Kelley. It sounds like you may of had an episode of Afib. I had two severe episodes in the year before my surgery and required cardvioversion (sedation & shock) in the ER. On Aug 18 - eleven weeks ago - I had a mitral valve replacement and have been mostly in AFib since one day post-op. You are right. It's scary and exhausting! I'm very symptomatic while being in AFib.
My story is quite long and I'm still not in normal rhythm. It's a "work in progress" but I understand that many post heart surgical patients have occ. and short episodes of Afib.
Sending you best wishes Kelley, that this will be your only episode.
I'm writing from Vancouver Island where we are having unusual weather: it's -4C and there is snow on the ground. So strange because it should be around 10C with rain, lol!

Laura Shepherd  How do you know when you're in afib? I remember them saying that when I transferred from ICU to a regular room. That will be a question I'll ask Dr. Kauten (heart surgeon) when I make my f/u appointment, today.

Kelley Turnbull  Wow that’s crazy Janet. I couldn’t figure out how quickly it came on. My son lives in Vancouver and says the weather has been up and down. Laura my heart rate went up fast and stayed there. Some have this happens and it self corrects but mine wouldn’t come down. A very panicked feeling

Bonnie Stone-Hope  Sounds very scary for you. Hope there are no more episodes like that!

Just flew back to Ontario from Kamloops yesterday. Very cold there, no snow in Ontario .....yet.

Gerald Poulton  Those are definitely comparable effects to Atrial Fibrillation but one would think they would have told you in the hospital if that is what it was. Their monitors detect it easily and that is also why I was so glad that pre surgery I purchased a blood oressure monitir that also detected AFib. I found out that it worked when I got sick and vomited because of duodenitis, a complication caused by OHS and the heart lung bipass machine. Any stress or pressure after surgery can bring on AFib. Fot the lucky ones it can disappear as fast as it occurs. Total recovery can take a long time.

Rose Madura  Hi Kelley. Of course I'm not a doctor but it doesn't sound like afib to me. It sounds like a bout of SVT (supraventricular tachycardia). I had it twice (2005 and 2010) and each time I was given Adenosine. In 2010 in had an ablation to fix it. During my "atracks" my heart rate was up to 220. Keep us posted !

  I agree with Rose. AFib is a rhythm that is "irregularly irregular" ... it sounds like your heart beat was very fast but regular, right? I just reread your post and you don't mention your HR being irregular. Hope this is the last of your rhythm issues!

Kelley Turnbull  Rose and Janet that is correct. Prior to this episode my heart rate was regular and during the episode my heart rate for the 4.5 hours was steady at 136-141. 220 that is crazy high. I see my regular physician next week and talked to her last night. She has requested a holter monitor (spelling ??) and requested for me to see a cardiologist again. It could be a one time thing but did advise not to be shocked if it happens again. Previous angiogram showed arteries are good.

  Hi Kelley. I had my pacemaker assessed this morning and I am in pretty constant atrial flutter. While I was there, my HR would jump up to 135, down to 80, and back up. So some adjustments were made and I'm waiting to hear from my cardiologist regarding the 24 hour Holter that I wore on Monday and talk about what the next step will be. The tech said it wasn't any wonder that I was light headed, tired and short of breath.
So atrial flutter instead of atrial fibrillation is new for me... regular heart rate, just fast.
Hope your heart is behaving. :-)
Janet

Kelley Turnbull  So far so good Janet. 1st day back to Cardiac Rehab. Didn’t push too hard but will push more tomorrow. I can imagine if the heart is going up and down it would make you light headed. On my weekend episode it stayed up. Maybe a one time thing just have to be on alert. Hope you are feeling better.

Jennifer Barnett  The tiredness is normal especially in the early stages it will get better in time and it's important to take it easy and rest when you need to. Once you feel stronger and able some regular light walking helps.

Jill Krajnovich  Glad you are doing well, Kelley! I am also 2 weeks post op. I am overall doing well but have had some lingering issues with a-fib. I have a follow up appointment today and I am going to discuss this. I am taking medication for it but it has not prevented it from coming back. Did you experience any episodes of a-fib? Hopefully, I will not have anymore.

Patricia Allen  Kelley, you sound just like I did after my surgery. I had a hard time realizing this is a slow process. It is all normal and you will regain your strength and feel so much better. Hang in there and rest

Jennifer McInerney  That is miserable although you have to be understanding of someone else's emergency. I hope they manage to get yours done soon. Psyching yourslf up for undergoing OHS is no picnic. Keep the faith. Thinking of you and continuing to keep you in my prayers!

Kelley Turnbull  Oh I totally understand it's all in my own mind that I have adjust and to press the reset button. My prayers are with the person who had an emergency and that it all works out for him/her.

Laura Jacobs  I am so sorry Kelley. The exact same thing happened to me, but at least it was a few days before not the day of surgery!! It was emotional for me to because I had settled into a date in my mind and I was afraid it would be pushed back significantly and all the scenarios that that might entail was swirling around in my mind. Then I received a call to tell me that my new date would only be a few days later than the original. It took a little time for me to realize that it gave me a few more days of summer to enjoy and I had read too much into it. I hope you get your call soon and you get in this week...if not try and think of all the things you can enjoy in the meantime. You are so right - hit that reset button!

Eric Linnenburger  So sorry this happened. We all know about the anxiety right now and just wanting to get er done. Glad you're not going to have to wait too long. Take care!

Rose Madura  Kelley, I pray for a positive outcome tomorrow. I'm glad you have complete confidence in your team. I did too and it makes all the difference in the world. God bless you.

Jill Krajnovich  Prayers that everything goes well for you tomorrow, Kelley! I will be following right behind you as my surgery is scheduled for the next day.

Kelley Turnbull  Thank you for all the support ❤️. Good luck luck Jill on your surgery. My prayers and positive energy are with you.

Jennifer McInerney  Yikes, I would hear "blood clot" and be all in a tizzy. Glad it's being resolved without too much intervention. Hope all goes well.

Jennifer McInerney  I know having family support is so important. My husband has been great. My daughter isnt handling it well but im hoping that with time she will. Good luck with everything. Im still waiting to hear my surgery date.

Laura Jacobs  Oh Kelley - I can just imagine the pain and fear of that. I am so sorry that you had to go through that. I had terrible throbbing pain in my arm that started about 6 hours after the angiogram. Four weeks later and my arm was still tender and bruised and keeping me up at night. I did not have the additional fear of a blood clot though - that would have panicked me I think. Even still it made me worry about how well I was going to manage the pain of the heart surgery when I couldn't handle the angiogram. In the end, the heart surgery was far less painful for me than the arm pain if you can believe that. I hope your arm is feeling better now.

Jennifer McInerney  Good luck. I will keep you in my prayers.. Hope you have a successful. Surgery and speedy un-complicated recovery.

Steve Farthing  If you need surgery to implant the valve, you could also ask which methods they offer. Everyone offers sternotomy but some docs also offer a somewhat less invasive endoscopic (not robotic) technique. If you decide on a tissue valve and it needs replacement sometime in the 10-25 years or so, you might have the option to have it implanted via a leg vein which is much less invasive. Mechanical valves may last longer but do not have the option for replacment through a leg vein. If your timeline allows, doing research and getting multiple surgeon/cardiologist opinions can answer a lot.

Marie Myers  I struggled with that decision also. I am 63 and decided to go with the tissue valve. Am hoping that TAVR will rescue me when I need a fix. It is a tough decision.

Kelley Turnbull  Thanks for the information. I have heard so many different timelines for a tissue valve that the last from 8-18 years and have read that there is a chance of still being on Coumadin. Quality of life would be better with a tissue valve (not so restricted). Interesting point about through the leg as that was not presented to me. More questions and reading.

Steve Farthing  Nobody can say how long a tissue valve will last in a specific person. Edwards Life Sciences claims one of theirs lasts an average of 17 years. And the older you are, the longer they last. So some people over 50 may get over 20 years or more with a tissue valve. Surprising they did not discuss this since it is such a nice feature of tissue valves.

Lynda Ruiz  I went in to initial visit with surgeon thinki g mechanical valve because of durability with secondary Maze procedure, so OHS, but did not want warfarin. Surgeon offered TAVR, but wanted to do a 3rd procedure at same time, definitely needing OHS . He pregerred Bovine valve saying it lzsted 12 to 18 yrs & that TAVR would likely be done then. He does have me on warfarin but only for 3 mos. I can do that!

Jennifer McInerney  I'm 62 and after much discussion and research decided on a tissue valve. If I need a redo, I'm hopeful TAVR will be available.

Bob Fessler  Steve Farthing has the right idea. Tissue valve for 15-20 years. Then a TAVR to fill in the rest of your life. TAVRs have not been proven to last very long (besides they leak more and have a greater chance of needing a pacemaker than a tissue valve). I read a study which showed that there is deterioration showing up in 50% of the valves after 7 years. Hopefully in 15-20 years, when I need a replacement, they will have improved them. Just my opinion which should DEFINITELY be taken with a grain of salt.

Laura Jacobs  Hi Kelly, I am 60 and just had a tissue valve surgery. I do not want to go through another OHS either, but the thought of worrying about managing Warfarin, having an accident and getting injured, or having a head bump was not how I wanted to live my life. My surgeon told me that he felt the TAVR was going to be more accessible in the next five years, so I decided to choose the tissue valve (I think I would have done that anyway). I had to have OHS this time in any case in order to repair an aneurysm. Hoping that I will avoid the sternotomy next time around. Good luck with weighing everything...not easy.

James Waller  I had an On-X mechanical aortic valve with my surgery June 2016. My surgeon recommended it though I was 65 at the time of the operation and I went with that recommendation.
I felt that I would rather take Warfarin than ever go through open heart surgery again. I've had some issues during the last year with my INR levels but I am happy with my decision to go with a mechanical valve.

Juergen Li  I can support what Bob wrote about TAVR - this technologies still has some severe limitations (durability, leakage, increased chance for pacemaker) by design that have not been solved yet. I went with a mechanical valve On-X at age 58. I have not problem with warfarin but can feel my valve at times.

Rose Madura  I'm 59 and went with the tissue valve. The surgeon told me that in 20 years it will START to go bad. So at age 90, it might be working at 85%. (All estimates of course). If need be, i can have TAVR procedure. Hope this helps.

susan sperry  I had a tissue valve when I was 48 and another tissue valve at 60. I wouldn't be able to stand the noise or the blood thinners of the mechanical valve.