TAVR to the rescue

I have been having discussions with family members/friends about how the system lets patients like Clyde get into such bad shape before they give them these procedures. And I’m not necessarily supportive of all the medical systems and routines. From my point of view, watching Clyde get sicker and sicker, I’ve been quite angry that they let him get so sick before doing something. I can’t think about it much right now. I get upset.  Now, having said that. The system is still relatively new. The TAVR systems started going into humans in 2002. In fact, the very first patient was a man about Clyde’s age. 59 vs. 57.
 

BTW, TAVR stands for: “transcatheter aortic valve replacement.” The idea first came into being in 1965. From the beginnings of the research came the idea of using the balloon to open an artery/valve. And today, as in Clyde’s case, a balloon was used to open the leaflets of the valve because they were kind of, in a way, glued nearly 100% shut by what comes down to cholesterol (calcification). The first balloon procedure on an aortic valve was done in 1985 on a 77-year-old inoperable female. Soon, two others had the procedures, and the outcomes were so good, that manufacturers started talking about coming up with specialty balloons. We still have not even gotten to the valve replacement part yet.

The first valve replacement in a human was done in the aortic vein in a valve that sits in the abdomen. At that time, it could not yet be used in the chest because there was nothing small enough in existence to do any of that procedure with. That was only seven years later, in 1992. By the way, that first one had a stainless steel chassis.
 

The next one was made of titanium, and it could go into a human aortic valve in the chest. It was sewn into a stent. It was first tested in sheep. What they had could be used in some places in the human body, but not in the aortic valve of the heart because, “…the arterial pressure is high…” This is what was going on in 2000.

In 2002 when the first aortic patient was implanted with a valvular device, he lived for four months after the implantation. He died of non-cardiac related reasons though. The valve had done an excellent job.

 

A couple of companies jumped in to come up with more choices and doctors began to experiment with finding out just what was the best way to go about implanting these things. In from one side of the valve, or the other??

The bottom line to this all is that this has
been a work in progress and in fact it still is!

The FDA finally approved the device in 2012, but only for critically ill patients who were at high risk of surgery. In 2016, the valve inside a valve procedure was approved for those needing an aortic valve replacement–or as they call it in Clyde’s case, a patient needs to have severe aortic stenosis. Even then the rules still say, that they have to be in pretty bad shape before they get a replacement. Pretty much inoperable. So, the FDA has not yet caught up with the technology.

Having said that, Drs. are just starting to kind of work around the FDA’s requirements. Naturally, not all of them. To show you just how cutting edge this stuff is, a paper published just last year, said the standard procedure was still to surgically replace the valve. That is why the doctor in Portland sent him home. He knew what was coming down the road and that if Clyde could wait it out, he would not have to have open heart surgery.

This, would explain, that despite how sick he got, he probably is better off for having waited, he got a TAVR, not another route with this chest cut open, which is dangerous no matter which way you look at it. 

A couple days before his procedure. It hit the news, and I read speciality medical journals and stuff like that so I can’t tell you now where I read it but I’m not sure it was the main stream news. But, it did hit the news in a credible publication that a valve similar to what Clyde has, has lasted 20 years!! In 20 years Clyde will be 79 years old. If he lives another 20 years it will be really remarkable. Considering his father died at age 34 and his brother at 43, both of heart disease–along with other family history all on his fathers side, he has never thought he’d live as long as he has. The doctors discovered Clyde had cholesterol levels off the charts when he was six years old, and he and his older brother became one of Stanford University’s guinea pigs for trying out the new statins. He has lived with this his entire lifetime, since before he can really remember. He was only 2 when his father died.

So, yes, he got really, really sick. And the sicker he got, the angrier I got. He is such a good and delightful person to be around. Like I told him, if he’d been a person like our neighbor from hell, maybe I’d not been so angry, but in this case, this was happening to someone I absolutely adore and have wrapped my life around. He is my protector in a lot of ways, and he knows that I need him for that, so there is that too. A good person at your side, helping you as you negotiate the world with PTSD, helps a LOT. Of course, it helps even more when you know you have PTSD. It explains so much in my life.

So, the truth is, he got the TAVR pretty much as soon as it went mainstream. And I think he was lucky that he did, and it is a blessing that they did not have to cut him open. The statistics for a second open heart surgery are not good. The statistics for a third is even worse, and the bottom line here is that probably, eventually, he’s still looking at another one if he wants to live. But, we’ll cross that bridge when we get to it.

So, being angry, has pretty much been a waste of time and energy.  And in real life, we all knew it anyhow.  We all figure it out usually pretty young in life, that anger is not only the route to go, but all it really is, is a cover for something else we do not want to face: the truth maybe, fear can be it.   Rarely is anger, just anger. 

The good news is that Medtronic, the company that makes Clyde’s model, and my pacemaker, is supporting a study on people who are getting the TAVR before they become severely sick to see if by any chance, the device can keep people from getting some of the bad stuff that comes down the road with severe aortic stenosis. One of those bad consequences is heart failure, which Clyde either has or is about to have. His blood test was positive for it, and his levels were as high as the test measured. So, he was probably in the beginning stages of heart failure.

Of course, we know what the outcome of that study will be. Preventative medicine is being pushed for the very reason that it helps prevent serious conditions later down the road. So, over the long haul, this will probably become preventative medicine. In terms of stockholders alone, it behooves Medtronic to push this. Never mind the lives that will be saved, lived, and enjoyed all the longer.

 

Thank you, Medtronic, you’ve kept two people alive longer than mother nature had intended. Those two people are extremely happy to be sharing their time on earth together, and we both consider every single day a blessing. We’ve both been blessed in this way for a very long time. Both of our fathers just died way too young of heart disease, and we both inherited some part of it.

So, if you were angry with me. Just know, that surgical replacement is still the route most doctors take. But, TAVRs are set to get into the fast lane and outpace those surgical routes at any moment now, if it hasn’t already. Clyde, for one, is really happy to hear that others will probably get their valve replacements much faster, and he’s happy he got his, And he is who we need to look to for this moment, because he is the one living with it. He is happy to still be alive, feeling better, and even in pain (in his leg). We can quit being angry now. ?

Should I say, “Stand back, and stand by”  I may need your support at another time again.  But, I appreciate every single one of you. 

sources:

https://academic.oup.com/…/article…/13/5/704/514435

https://www.ncbi.nlm.nih.gov/books/NBK431075/….

& various pages at Medtronic that are designed for doctors not nosey people like me who can figure them out. LOL

 

An extra note, and tie in to my life: 

This post, is dedicated to dad, who like Clyde was always on the move, enjoyed life, and took as much advantage of it as he possibly could.  Both men shared determination and grit.  

Dad was by no means a perfect man, but then who among us is?   As I told a nurse practioner a few weeks ago, I’ve spent a lot (a lot, a lot, a LOT) of time being angry with him.  I have my moments still.  But, all in all after several years of working on forgiveness, I think I am mostly there.  There are reasons I’m mostly there, spending time with family and seeing just how dysfunctional that side is.  He was raised with it.  In a lot of ways, he didn’t know better.  It is really hard to buck what your parents taught you and not everyone is capable of it.  And that is really the truth.   Dad was the victim of a lot of generational violence, which I can date back to and document back to the 1600’s.  Generation after generation of violence.  Of course, my sister and I inherited the legacy.  Dad used violence in raising at least me.  My sister denies it, but then she’s got a strong case of denial anyhow.  She took after mom, if you look away and pretend it’s not happening, maybe it’s not.  It doesn’t work that way.  And this website, if it’s about anything, it’s about stopping the cycle of violence and need I say it?  child abuse! 

Dad did something to me that hurt me the rest of my life.  I was so young that I don’t remember it actually happening.  I remember other details around it.  My mothers brother, finally verfied for me that dad had hurt me, that from that point on that side of the family considered the Rowe’s uncivilized.  When I flat out asked him what my dad had done, he could not name it.  The look on my uncles face was one I’d never seen before, that I can remember anyway.   At it’s base there was profound sadness.  There was a ton of pain in that expression.  Considering I’d heard about my uncles bar brawls and other bloody times that young men have a tendency to engage in–it has not slipped my notice that the fact that he could not name what had happened to me, probably means it was extremely violent or sexual or both.   I’ve thought, and came up with the idea on my own years ago, based on my own fears, and reactions to certain experiences that dad had sexually abused me already.  

So, for me to forgive him.  That’s a big thing.  It comes down to, he’s my dad and that will never change.  He was probably sexually abused too.  He reacted the way a lot of boys do when the grow up.  In fact, in a twisted way, it could be considered a normal male reaction to being sexually abused.  I can look back and see now that dad had big, big issues.  And the truth is that he dealt with them the best he knew how, and he did try to better himself.  He got a high school diploma in his 30’s.  In the 1970’s that was a big deal.   There is no doubt that dad himself, was angry, sadistic, and all sorts of other things.  He was absolutely loyal to the person who probably abused him, his father.  He told me he’d never know his father to lie.  Guess what?! I have never known my father to lie either.  He was a lot of things, but a liar wasn’t one of them, at least not when dealing with this kids.  And he did apologize.  It was a blanket apology, and that is the kind that can cover a lot of ground.  It was something that I could not even let soak in until I was in my 50’s.  

Dad died at 43 of his third heart attack.  10 years before, he’d had one of the country’s first by pass surgeries, and Shumway was his surgeon.  Shumway is still in the medical journals. Dad was on a heart transplant list when he died in 1983, that would have been considered cutting edge too, although DeBakey had done the first procedures with apes or monkeys in Africa years and years before. 

It makes me really sad to realize that when dad was living, the doctors and inventors were working on the TAVR system.  If he’d lived just a little longer, he probably could had had some stents, or a TAVR, or some other thing that we consider routine these days done, and he too could have seen old age.  I know, he was settling down, and I know my kids would have been better off having their grandpa in their lives.  Especially my boy.  

In someways, my kids did have their grandpa.  In the form of their mother, another imperfect soul.  And if there is a heaven, I’m sure he’s looking down on us.  In fact, I thought I heard him laughing just the other day.  I love you, Daddy.  Even when I was mad at you, I loved you. 

Alvin C Rowe and co-worker in the Army

Alvin trained at Fort Ord in California to be a cook. But he was also a munitions manager. Alvin C Rowe (right) and co-worker.

About PeggyAnn

Professional PC Consultant, Researcher, & avid people watcher, Peggy Ann Rowe started into her genealogical quest at age 15 after watching the mini-series, "Roots" with her parents. This new obsession has fueled her love of history, & study of cultures & societies in every epoch. Today she is 57 years old with four kids who are all grown up (& all have flown the coop). In between her 'gigs' with clients she volunteered at many different non-profits. Former President, Secretary, and Director at Large on the board of the Douglas County Historical Society for 10+ years, and former Secretary at the Cloverdale Historical Society (Sonoma County) for nearly 10 years. This website is an attempt to share the knowledge she has gained about her family ties with others who may be interested in the same things. She does not guarantee 100% accuracy and does hope that you will send corrections. To learn more about her, click the "about" button in the page menu. Thanks! Another goal of this website is to disseminate a message (i.e. education) about domestic violence, child abuse, and all forms of sexual abuse to society at large. The message comes from real experience from the whole spectrum of the violence from sexual abuse by a perpetrator to sexual abuse perpetrated by a husband, to the abuse of children within the family. Peggy has seen it, lived it, and been hurt by it. There will on occasion be details that might be hard for some people to read, and a warning is usually posted at the beginning of the essay so that those who want to turn and not read may do so. The only way to teach and to let others learn what to avoid is to SHARE what happened with every detail necessary to make the point. Thank you.
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