Betsy's Guestbook

Suzette Schear  Betsy I had to put child locks when we had Mr. Felix. I had two cats and a dog. When we would go out Tiger would open the door and Mr. Felix was a glutton we would find cat food on the floor and all three of them eating.  Tiger also knew how to open the back glass door.  

Kimberly Eisenhut  Yalitzaly, 
Please let us know what you found out today. I will be rooting for you and very interestsed in your story, as I also have tricuspid regurgitation and will need surgery some time in the next couple of years. You will have a hard time finding others here with primary tricuspid trouble. It is not a surgery that is done often and is quite rare on its own. Many people here have it fixed along with other valves during surgeries, but I have yet to find anyone who has had primary tricuspid surgery. There is a new valve that was just ok'd for use in the US a couple of months ago for tricuspid, so that is good news! Keep us posted, and remember you have a whole community of wonderful people here to support and encourage you along this journey 💖

Betsy Davenport  Yalitzaly, I just wrote an update. The procedure went perfectly without complications. Thank you for asking about it. I've been away from this web site for a while because I've been downhearted and have little energy or motivation for much of anything. I'll write more about it in the coming days.


I'll put up a picture of my cat, who entertains me, aggravates me, makes a mess of the place because she is into everything and doesn't care if she makes me mad enough to shove her off the bed. It's sleep time, not playtime!! She's a force in my world and though I had wondered if it was smart to get her not long before my surgery, it's been a bright spot in my life while I recover and take stock of myself now that my heart works right and I am still old, I notice. She has proprietary feelings about the mouse, appropriately enough.

Betsy Davenport  Cardiologists as a group are arrogant. That's all it was about. They are, or feel they are, competing for the next residency, next staff position, trying to demonstrate their prowess at every turn. It's a system that pits them against colleagues, and in your case, makes them feel small if something unanticipated happens. You weren't competing, but your cardiologist felt he'd lost. Worst of all in such a system is the failure to learn from those surprises. Has anyone asked how you account for the reversal of calcification? And if yes, what did they do with the information? 

  Unsurprisingly no one has had any interest in the whole picture of my disease.  This may be partially due to having had so many Cardiologists and when meeting with a new one they hadn't looked at everything.  In addition I've noted that on my echocardiogram reports they only ever reference the previous test, not the previous X tests.

My last Cardiologist at OHSU was Dr. McGrath, I only met with her because my previous Cardiologist at the time, Dr. Aldweib, scheduled my next appointment then stopped seeing patients I guess, so I ended up with my 4th doctor.  It was apparent Dr. McGrath hadn't even looked at my history before the appointment and since this appointment was the follow up for an Echocardiogram it was focused on those results (which once again ended up being wildly mismeasured in regards to left ventricle dimensions).  I did bring my own data that I've been tracking in Excel to that appointment and asked her about both it and some of the research I had done on K2, Hawthorne, etc..

She didn't have much to say other than it was impossible to turn my BAV into a normal tricuspid valve which of course I knew, and wasn't at all what I was asking about.  Ultimately she claimed she would look into some of the research being done on reversing aortic valve calcification but I never heard from her again and decided to switch to Providence after 3 years of being kicked around OHSU and dealing with the overwhelming incompetence of their ACHD department.

Currently I'm seeing a Cardiologist in Newberg and she has every imaging certification under the sun.  Further, she has actually followed through and looked over all of my previous imaging, remeasuring the outliers and both confirmed the trend in my gradients and AVA, as well as confirming that the left ventricle dimensions OHSU had measured were ''definitely over measured''.  She won't entertain any discussions about the disease reversal, at least not yet, but at least she bothers to look at my imaging and I feel I can trust the interpretations she gives me.

Overall it has been quite the journey so far.  I was very concerned during the initial diagnosis and being told I needed surgery imminently wasn't much fun.  Now though, I honestly believe that I won't ever need that surgery.  Depending on my next echocardiogram I'm planning to reduce the imaging and Cardiologist appointments to once a year which my current Cardiologist is in support of.  I do wonder though how the 'professionals' can rationalize my story with the data right in front of them.  As far as I know it's unheard of for someone with my numbers in the 'severe/critical' range to regress to 'mild/moderate'.  In addition I have all of my exercise tracked with a Fitbit, and I'm in remarkably better shape now then I was at the time of diagnosis, which should have been impossible.  

Who knows, maybe I'll be able to have a real conversation about it next month during my appointment.

Betsy Davenport  Oh jeez, I'm going to have to read this again, maybe more than once. The mistake made in misunderstanding you to be asking about changing a bicuspid to a tricuspid valve is typical of something completely underestimating your intellect, because duh, of course, as you say, and it's in the realm of fantasy, not thinking, and not what you would indulge in, let alone not know the difference. (As an aside, it's the kind of mistake I particularly detest, because it's indicative of poor/insensitive observation and low discernment. Not qualities I want in someone looking after my medical needs. 

So. I am only recently getting interested in this aspect of things, but I've known for some time that among people there are "slow calcifiers" and if like to be one of them. I've known that higher magnesium levels in the body can help with this, but magnesium is damnably hard to absorb. It's best measured in tissues, since blood levels do not mimic the tissue levels, which is where the magnesium is needed. 

If you can point me in the direction of what you read about calcification and/or its reversal, I'd be grateful. I would like to not need another valve, if possible.

Betsy Davenport  I go to the Newberg office, too, but have only seen my cardiologist once or twice, and he was so much better than the one who failed to diagnose my PVC and instead diagnosed me with a psychiatric disorder he was not qualified to evaluate anyone for (and, I am, ironically enough), that I kept him. I was soon sent on to the valve team, which has been a very mixed experience but I have a new and functioning valve out of it. If like to outlast it, however.

  I'll leave a list of some of the reading I've done over the years in regards to AV calcification.

More recently I learned about Lp(a), perhaps you've heard of it or already had it tested but it's fairly new (just a blood test).  From my understanding this biomarker is something that's only modifiable with medication, but there does appear to be strong links between it and valve calcification.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9820656/

Outside of that much of my research centered around vitamin K2, Magnesium, and vitamin E.  I wouldn't say much of the research is conclusive though, my issue with much of it is how the studies are conducted.  I don't know how reliable the average person is when self-reporting that they are in fact adhering to the study protocol.  I'll link a study I read more recently that did find a correlation between vitamin K and slower AV calcification.

https://www.ahajournals.org/doi/full/10.1161/circulationaha.116.027011

Hawthorn is another interesting subject when it comes to cardiovascular health as it has a long history of being utilized.  There's even some interesting research that has been done it by recognizable institutions such as Mt. Sinai.  The more I read about Hawthorne in old traditional/herbal medicine books the more convinced I become that it's playing a key role in the course of my disease, it's remarkable the knowledge that has been forgotten in the wake of mass pharmaceuticals.

https://www.mountsinai.org/health-library/herb/hawthorn

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249900/

Betsy Davenport  Suzette, thank you. I'm tired but took a little walk today. My pulse is faster than it was before the surgery, so I guess that's a sign of something. I'll go read for 8th time what it might mean. 🙄 This stuff doesn't stay in my brain the way I wish it did. I don't have much appetite, but my daughter brings me food if she thinks I should have it. I'm thirsty, so drinking plenty of water. 

Rita Savelis  Pulse is usually faster after surgery, for a few months at least. Sometimes doctors will put you on a betablocker pill (which will slow your heart down so it does not have to work so hard as it heals) for a few months or longer. Loss of appetite is common. Eat whatever you want whenever you want. Appetite will eventually return. Take care Betsy.

Suzette Schear  Betsy -Rita is correct i didn’t eat much after but then that changed.  Foggy brain is common it’s all the meds and anesthesia.  I remember being tired, you had heart surgery so now comes the tough part learning patience in healing.

Betsy Davenport  Rita, the opposite happened. I've been on Metoprolol for a few years to lower my BP, which it did, effectively. In the hospital they discontinued it, and my BP and HR went high. They were unwilling to let me take it until I went in 2 days ago, my BP was 191/something, and I questioned the wisdom of withholding Metoprolol. Okay, so then I was told to resume, which I did, and within 12 hours, both measures returned to normalcy. 

Betsy Davenport  Suzette, like so much else, this is not information I was given ahead of time. The doctor was exhaustive about the list of risks and data on incidence for cardiovascular events, but not one word about brain related changes. Not one thing. Informed consent? I think not. Yet scores of patient accounts discuss it. The research isn't very good and I don't know why. Cardio docs don't register anything but cardiovascular events? Patients don't mention them? No one cares if your brain works because, by golly, we fixed the heart!? I don't have a theory on this, but I think it's unconscionable that there's no research to be found either in calling or in the psychiatric literature. I'm not letting it alone, either. Watch this space, LOL.

Suzette Schear  Betsy I have discovered & did research and found out a lot.  Give it 3 months . My foggy brain is gone.  Everything  you are stating is true.  There hasn’t been much research about it.  I used the wrong words I felt like I was slurring, I couldn’t think clearly.  For me it took about 3-4 months I was told it was normal.  I was never ever told before.  My boyfriend’s friend told him his wife had depression and got a bit wacky after surgery and to let me know.  So most of this is common.  I looked on this website and I think last article was  way before 2024.  Because I have other stuff going im focused on that.  Hope this isn’t too wordy just give it a little more time.  

Rita Savelis  I hear you Betsy. Sometimes I wonder if patients don't want to know. I tend to grill my doctors and ask for the worst case scenario, the late effects that only 2% of patients get. Knowledge is power. But I do think some don't want to know so doctors will not automatically discuss all the possibilities. They certainly don't talk outside their field of specialty or unless there is solid data or a protocol has been changed in their hospital. Heavy sigh. I personally would never say to anyone that they will feel great in a few weeks. I'm always astounded when I hear that.  Each person will have a few side effects/late effects, some more than others. But the more aware you are of them as a possibility the less nervous you are (or I am) when/if they happen because you feel like you are still "normal".  Brain fog is "normal" and is probably related to anasthesia. The anasthesiologist could probably tell you more. Depression is very common and mentioned everywhere but when I talked to my cardiologist about it he wasn't very reactive. I'm glad you're back on betablockers Betsy. Your heart needs a rest!

Betsy Davenport  Rita, I'm similar in that I do better in life if I know and understand. Apparently, I'm more curious than most people, which is weird to me because it feels normal to try and put things together that I don't yet understand. 

Today I went in for my 2-week follow up appt and saw a PA whom I've seen before. He checked me over, looked at test results, asked how I'm doing. I asked him about the brain related issues and he said as long as it was getting better and not worse, he had no concerned. I like this guy. But he also wasn't concerned with why these issues occur in the first place, not was he concerned or interested that I wanted to understand more. They always allude vaguely to the heart "getting used to" the new valve, but that's not in any way explicit about what that means, for the heart. Like, in what ways is it different for the heart, and what does it have to change with the new valve and better blood flow? Heck, I don't know enough to know what questions to ask, but no one seems to have any idea how to explain it to me. And the lack of curiosity is a phenomenon I've encountered for decades. My daughter was chronically ill as a child, and it was outrageous to see the lack of real interest in sorting through an unusual set of symptoms. Even in the face of clear suffering in the child. I will never not be mad about that. And I go into every appointment assuming help is there and that I'll learn what I need to know. My daughter tells me to stop expecting what they are always inadequate to offer, and that she assumes she won't get the kind of doctoring she'd like. Sigh. 

Betsy Davenport  Jacquelyn, thank you. I'm so relieved. When it was over and I realized I wasn't still being prepped (!), but taken to my room, my biggest feeling was relief. I realized then that I hadn't been afraid about the procedure nearly so much as afraid of complications. But! No bleeding, no heart attack, no stroke. So far, the only things different are a faster heart rate, and walking upstairs without getting breathless. I'm still under stroke watch, but I'm just so glad the scans look good for the new valve and I've nowhere to go but up now. 

Jacquelyn Erndl  That is wonderful news Betsy! I’m very happy to hear that and I hope you continue to heal and get better every day! 

Barbara deLoache  I read your story and how one of your docs insulted you with a psychiatric diagnosis. The exact same thing happened to me. I was Seeing my cardiologist  once a year and my stenosis was moderate ….my next echo would be six months away. I started feeling so fatigued… I went to my internest who said “ have you tried Cognitive Behavioral Therapy?” WHAT??  I have been an RN for over 40 years, so I called my cardiologist & had an echo 2 days later. My stenosis had become serious at that point  & now I am 4 months out from open heart surgery. I am a young 78 and I truly believe the older woman thing was a factor. 

Betsy Davenport  Barbara, I see that guy's name every time I go to the cardiology office and it makes me mad. The morning of my TAVR, someone in the hospital asked me (and it was so out of left field I knew they'd read it in my chart) if I was feeling any particular anxiety at that moment. "Yeah," I said, emphatically. "I'm being prepped so someone can go tinker around with the inner workings of my heart. Yes, I'm anxious. What else would I be?" 

Betsy Davenport  Thanks Linda. I'm on the mend at home looking out at the late afternoon sun on the golden grass and the barn and the trees behind. I'm glad to be here and I only wish they hadn't made it so unpleasant for the last months. I'm looking forward to see what I do when my energy and fitness return. 

Betsy Davenport  I grew up near you, but south, near New Hope in lower Bucks County. I noticed the 2nd day I can go upstairs without getting breathless. I need reconditioning though, since I'd reduced my physical activity a lit in order to not strain and damage my heart while waiting for my new valve. I hope you're still doing well! 

Betsy Davenport  This was such a useful post. I think I saw it before my procedure but time was short and I didn't reply. Thank you very much for it. My daughter, an adult, and my sister, veteran of several family member surgeries,  were both here and took good care of me, the logistics, and the medical staff.

Betsy Davenport  I never thought I wasn't strong. I don't know where you got that idea. I've always been physically and mentally strong, and part of what makes me so is I don't avoid my feelings. I was scared. That's not weak; that's someone who wants to live and has a lifetime of experience with the medical system that does not inspire confidence. (This latest experience did nothing to alter the balance, either, I'm sorry to say.) Thank you for your good wishes from down under.

Betsy Davenport  Hugh, I was unnerved by the idea of OHS. As it turned out, I'm lucky to have no complications that might have made TAVR a poor option. I wish the same for you. 

Betsy Davenport  I'm ready to feel better. We have a lot of smoke in the air just now and that makes breathing even harder. I'm anticipating rapid recovery. Thanks for your note.