37-Year Mechanical Heart Valve Replacement Success Story: Allen Stendahl
Written By: Adam Pick, Patient Advocate, Author & Website Founder
Published: July 2, 2020
The patient success stories keep coming in! This time, I had a very special opportunity to interview Allen Stendahl from Fernandina Beach, Florida.
In 1956, Allen struggled with rheumatic fever. Then, 10 years later, Allen contracted bacterial endocarditis. As a result of these infections, Allen was diagnosed with a severely leaking aortic valve, also known as aortic regurgitation. He needed a new heart valve. This is his story…
Patient Learnings from Allen’s Story
I really enjoyed getting to know Allen and to learn about his life before-and-after surgery.
There were several great points from Allen’s story that I wanted to jot down for all of us to learn from:
- While Allen was diagnosed with rheumatic fever (at 9 years old) and endocarditis (at 19 years old), his aortic valve did not need to be replaced until Allen was in his mid-30s. This is important for patients to appreciate as heart valve disease can progress over short or long periods of time. For this reason, patients diagnosed with heart valve disease should get annual check-ups to monitor a defective valve and prevent cardiac damage.
- Allen was formally diagnosed with a severely leaking aortic valve, also known as aortic regurgitation or aortic insufficiency. As a result, blood was flowing backwards across his aortic valve which put extra strain on the heart as it needed to “repump” blood across through the heart.
- Given Allen’s age at the time of surgery (35 years), Allen was excited by the possibility of getting a mechanical heart valve replacement. He felt there was a possibility this operation could be a “one-and-done” situation unlike tissue valves which typically wear out over a 10 to 15 year period.
- Since his operation, Allen has not experienced any issues specific to the functioning of his St. Jude Medical mechanical valve. (So you know, St. Jude Medical was purchased by Abbott in 2017.)
- Specific to the lifetime use of blood-thinners (e.g. warfarin, Coumadin) needed to eliminate the potential risk of clots forming on the mechanical valve, Allen has not experienced any issues testing his blood for acceptable INR levels.
- Allen has lived a “full life” without any restrictions after receiving his mechanical valve. Allen has not had a heart valve re-operation.
Allen & His Children
- Allen’s advice for patients is to get regular monitoring of your heart and to be honest with your medical team about how you are feeling – good or bad.
Thanks Allen! Thanks St. Jude Medical / Abbott!
I can’t thank Allen enough for sharing his mechanical valve replacement success story with our community. Allen is the longest living, heart valve replacement patient that I have spoke with. Needless to say, his 37-year journey has been very inspirational for me considering it’s only been 14 years since my operation. 🙂
Allen & His Wife On The Golf Course
I also want to thank the team at St. Jude Medical / Abbott for making such a wonderful medical device that has helped Allen live such a great life!!!
Related Links:
- Learn About The Regent Mechanical Heart Valve By Abbott
- Linda’s Challenge: Can You Heart My Mechanical Valve Tick?
Keep on tickin!
Adam
P.S. For the hearing impaired members of our community, I have provided a written transcript of my interview with Allen below.
Written by Adam Pick
- Patient & Website Founder
Video Transcript:
Adam Pick: Hi, everybody. It’s Adam with heartvalvesurgery.com Today, we have something very, very special for you to see and learn from. I have, as a patient, experienced highs and lows. Before surgery, you have concerns and doubts about what is going to happen with your valve disease, how your surgery is going to go, and what’s the recovery going to look like.
To showcase how great life can be after heart valve surgery, I want to bring in Alan Stendahl. Allen, are you there?
Allen Stendahl: I’m here, Adam. Good to see you.
Adam Pick: Great to see you too, Allen. Thanks so much for being with us today. Allen, I can’t thank you enough for spending some time with us here, having this discussion.
Let’s tell the folks a little bit about your background. Allen, you’re 73 years young, look fantastic. You’re living in Fernandina Beach, which is on Amelia Island in Florida. I understand you’re retired from a wonderful career in commercial insurance, and now you are an avid golfer. You’ve been married for 30 years, if I understand that correctly, and you have three wonderful adult children.
How did I go in terms of your timeline of life, Allen?
Allen Stendahl: You got it perfect, Adam. I have lived in various parts of the country: one in New York City, one in San Francisco, and one down here in Sarasota, Florida.
Adam Pick: Allen, I’ve got a ton of questions that we’re going to get to, but I want to start with just this overwhelming fact, and I’m going to let you share the good news with all of the members in our community. Allen, how long has it been since you had your heart valve surgery?
Allen Stendahl: It was October 19th, 1982. I remember it like it was yesterday.
Adam Pick: I’m not great at math, but I’m going to take a guess and say that’s about 37 years. Is that correct?
Allen Stendahl: Correct.
Adam Pick: Wow! Allen, the other question is have you had any additional operations for your valve since that time?
Allen Stendahl: No. I’ve not had any issues with my valve. It hasn’t required any additional surgeries, which was one of the things that I was most pleased about when I first learned that I was going to have a mechanical valve implanted instead of a tissue valve.
Adam Pick: Allen, let’s start now with some of these questions. I’ll lead up to the valve you selected and what your life has been like since. I understand that you were first diagnosed with heart valve disease when you were about nine years old, and that’s going back to 1956. Is that correct, and can you share with the members of our community what happened.
Allen Stendahl: Yeah. When I was nine years old, in fourth grade, I was diagnosed and began treatment for rheumatic fever, which wasn’t uncommon back in the ‘50s. It wasn’t a common ailment, but it wasn’t as uncommon as it is today. I was confined to bed for three months, which was hard for a nine year old to be. The result was, as it often is with rheumatic fever, a damaged valve. They learned that almost immediately post-surgery. I’ve been under doctors’ care for this murmur, or damaged valve, ever since.
Adam Pick: That happened when you were nine. I understand when you were 19, you got a full work-up done. What did the doctors learn? This was back when you were in, if I understand it right, Madison, Wisconsin. What did the doctors find out when they did this extensive work-up on you?
Allen Stendahl: Well, I went to the University of Wisconsin’s Hospital in Madison, Wisconsin because we were living in Wisconsin at the time, and they did a complete four, five-day work-up. The phrase that I most clearly remember from the results of their testing was that I had aortic insufficiency, with left ventricular heave. The report went on and on from there, but those were the words that have always stuck with me.
Adam Pick: Allen, for the members of our community out there, or anybody watching this, patients, caregivers, medical doctors, who knows, aortic insufficiency, that means that you had a leaky aortic valve. Is that correct?
Allen Stendahl: Correct. That’s right.
Adam Pick: Then the doctors went ahead and you went into, what we hear here all the time, watchful waiting into your 30s, so for the next 11-plus years. Then what happened?
Allen Stendahl: Well, as you say, I was under – it’s when I began being under the care of a cardiologist, in addition to my primary care physician. I would visit with my cardiologist at least once a year, throughout my 20s and early 30s. As part of that examination, he always performed an EKG. Things were rocking along just fine until spring of 1982, when they noticed a significant change in my EKG. I don’t remember specifically what they said the issue was, but I do know they felt it was serious enough where they thought I should have an echocardiogram, which I hadn’t had up to that point.
They scheduled an echo for me and the echo confirmed that I did have – it confirmed what the EKG had indicated. They then decided I should have an angiogram. They scheduled that for the summer of ’82, and I had the angiogram done. After getting that done, they took the results of that and discussed it with the surgeons. They decided that the time was right; they recommended that I have the valve replaced.
Adam Pick: This is, as you know, Allen, as I know, as a patient who’s been through it, this is a really big important time for you. You’re faced with a life-changing decision. You have these options that maybe you have and maybe you haven’t considered before. That valve replacement choice could be something like a cow valve. It could be a pig valve. The other alternative could actually be a human donor valve, a homograft. Patients can select a Ross procedure, and there’s the option of the mechanical valve.
Obviously, you went down the path of the mechanical valve. Can you tell me what it was that excited you about the possibility of having a mechanical valve?
Allen Stendahl: Well, the obvious answer is when I heard that with the mechanical valve – even though they were still relatively new – mechanical valves have been in use for 25 years, I suspect – this particular valve that I had implanted, the St. Jude valve, had only been used since 1977, so it had been a little less than five years. They told me that their hope was that with the mechanical valve, it would last a lifetime. Of course they couldn’t say for sure that it would, but when I heard that, that’s all I needed to hear. I was happy to have the mechanical valve. Knowing that even though I would have to be on blood thinners my entire life and have my INR checked on a regular basis, that was a small trade-off for not having to have another surgery somewhere down the road. We opted for the mechanical valve and 37 years later, here we are.
Adam Pick: Wow, amazing! You brought up a really interesting point, Allen, actually several points. The durability of the valve was attractive to you. The possibility it was a “one and done” scenario for you. The other thing that you brought up was the use of blood thinners, to prevent the potential clotting in the valve over your lifetime.
I’ve got to ask you, has it been difficult for you to be on anticoagulants to prevent any kind of clotting in the mechanical valve?
Allen Stendahl: No. You know what? It hasn’t been a burden or a nuisance at all, Adam. It’s something I’ve gotten so accustomed to having on my calendar. When things are going well, it’s only once a month. If I get out of range a little bit, I may have to adjust my medication and go back in a couple of weeks to have it rechecked. For the most part, it’s always month after month, one time a month, and it hasn’t been a burden at all.
Adam Pick: The big question coming out for me is when I talk to patients who’ve had the procedure, and it’s all procedures, I’m really curious to know about the quality of life. This disease can be so debilitating. It can be so insidious that it can really wither you down without you, potentially, even knowing it before you have a procedure. What I’m curious to know is Allen, how have you been doing these past 37 years? Can you share about the impact that this procedure has had on you and your life?
Allen Stendahl: Well, if you’d asked me that three or four years ago, Adam, I would have said I’ve been great. I had absolutely no issues for almost 35 years. I had little or no restrictions on my activities. Even after I had the surgery, I resumed playing fast pitch softball for a couple of years. Then my passion turned to golf, along with my wife; we’re avid golfers. I will admit, we don’t walk anymore. We rewarded ourselves, or I rewarded myself when I turned 65, to always ride when I play golf. Like I say, there have been really no issues up to that point.
Three years ago, I was diagnosed, or started having an issue, with some arrhythmia problems. Again, the echo indicated that I could probably benefit from a pacemaker. I did have a pacemaker implanted three years ago. Also in that year I had to have an ablation procedure because I was having some issues with PVCs. In both cases, the doctors – I specifically asked them – the doctors assured me that it had nothing to do with my mechanical valve.
Adam Pick: If I can stop you right there, Allen. Sorry to interrupt. I just want to make sure – you go 35 years without any cardiac issues. You have some arrhythmias, you have PVCs, and then you have some procedures to help out the rhythm in your heart, but not connected at all to the mechanical valve. Is that right?
Allen Stendahl: That’s correct, absolutely.
Adam Pick: Wow, amazing! Now that you’ve had those procedures, how’s the ticker doing?
Allen Stendahl: It’s doing well. I just had an echo in February; I usually have one a year. That echo – while my heart functions, and more specifically my ejection fraction, hasn’t improved to the point they would like to ultimately get it to, my valve functions are doing just fine. My mechanical valve continues to – you’re not old enough to remember the old Timex commercials, “It takes a licking and keeps on ticking!” That’s what my valve does.
Adam Pick: Well, you know, Allen, it might surprise you, I do remember those commercials. I’m glad to hear you continue ticking, whether it’s related to a commercial or not. Obviously, if we are giving out degrees for patients in heart valvular conditions, you’d get a doctorate, Allen.
I’ve got to ask you; you obviously have advice for other patients out there who are going through this. Let’s talk about your advice, maybe, for patients who haven’t had a procedure just yet. Maybe they’re like you; maybe they’re on watchful waiting. What advice would you have for patients that are getting ready for a procedure or are monitoring their valve disease?
Allen Stendahl: I guess the one piece of advice I would give prospective surgery patients would be, once the doctors make that decision that it’s time that you should have the surgery done, don’t hesitate or don’t procrastinate. Get it done. The only reason I say that is because you’re going to be amazed at how much better you feel. I know I thought before my surgery – that year before I had surgery, I thought I was doing just fine. I hadn’t had any symptoms. I didn’t have any shortness of breath. I had no chest pain. They would ask me how my energy level was, and I thought my energy level was okay. Then I had the procedure, and lo and behold post-procedure, I didn’t feel nearly as good as I thought I did because I sure felt a lot better when it was over. If at all possible, get it done as soon as you can.
Adam Pick: Great advice, Allen. Let’s go ahead and let’s flip the switch and talk about the patients who have gone into recovery after a procedure. Obviously, you’ve got 37 years of experience, what can you share with those patients, as they have gone through the procedure?
Allen Stendahl: Well, again, the one piece of advice, or maybe a couple of pieces of advice, would be to continue to remain under your cardiac care team’s care. Even though you are going to feel much better, as I previously stated, the temptation might be to start letting an appointment slide. Well, I don’t need to see a doctor this – my cardiologist this year, or whatever. See them regularly. They know what’s best. I’m certainly in no position to offer medical advice to anyone; I’m not a physician. I saw my cardiologist religiously, once a year, and my primary care physician twice a year. Then even in the last five or six years, I’ve been seeing my cardiologist twice a year. Now, I’ve added to the list my electrophysiologist as well. Keep seeing them.
When you do see them, be open and honest with your doctors. They know what’s best for you and they can’t treat you if they don’t know the whole story. If they ask you how you’re feeling, resist the temptation to say, “Oh, I’m fine,” if in fact you’re not fine. If you are, that’s great. Tell them so. I know I’ve been guilty of it, when I’ve gone to see a doctor. Even when a friend asks me, how am I doing, I’ll say, I’m good, I’m fine, when really maybe I’m not. Be open and honest.
Adam Pick: I love the advice, Allen, for the patients out there; I couldn’t echo those more. These days, you have to advocate for yourself. You have to go ahead and just monitor your heart after a procedure like this. Being straight with your team about what’s happening with you does nothing but help everybody, as we work together to ensure health.
Allen, as we wrap up here, obviously you’ve referenced St. Jude in your mechanical valve several times. Obviously, over the years St. Jude – and actually, not too long ago, St. Jude was acquired by the team at Abbott. I have just a question for you. Is there anything you want to share with the medical team, the researchers, the developers of your mechanical valve. Given all that you’ve been through over this past 37 years, is there anything you’d like to share with that team at Abbott?
Allen Stendahl: Well, a couple of things, Adam. First of all, I had great surgeons and a great cardiologist back in – where I had my surgery done was in the Minneapolis, St. Paul area, at a hospital called United Hospital. As I mentioned, one of my surgeons was involved very closely with the St. Jude organization. He had a lot invested in it and a great interest in it and was a very skilled surgeon. I would just like to thank St. Jude for all of the work they’ve done, not only in the mechanical valve space, but in the medical device space in total. I’m sure that’s one of the reasons why they became a very attractive target for Abbott Laboratories as a purchase.
Again, I’d just like to thank them for giving me the quality of life that I have enjoyed for the last 37 years since surgery. Allowing me to do all the things that I ever hoped and dreamed I might be able to do.
Adam Pick: Well, I think that’s going to resonate with a lot of the patients out there who have this tremendous amount of gratitude and thankfulness for all the organizations, all the medical companies, and the doctors who have come together to support us through what can be a very, very difficult and trying time. Just as you’ve extended thanks to your medical team and to Abbott St. Jude, Allen, I’d like to extend a monstrous, humungous thank you to you for taking the time to meet with me. It’s been great getting to know you over the past little while here. I can’t tell you how much I’ve enjoyed hearing your amazing story that has inspired me. It’s touched me. It’s moved me to know that if you can make it 37 years, hopefully I and so many other folks in our community can as well.
On behalf of our entire community at heartvalvesurgery.com, Allen, I just want to thank you today for your time.
Allen Stendahl: Well, thank you, Adam. If I could, before we leave, also thank you for the tremendous service that you provide to this community of prospective and heart valve surgery patients, and also who have received a heart valve. I only wish that something like this would have been available to me when I was going through the process of making the decision, do I have the surgery or not have the surgery, what can I expect and whatever. The tools that you provide online are just amazing. I only scratched the surface, I know, in looking at them, but I’m looking forward to learning more about you and your organization.
Adam Pick: Well, for me personally, Allen you’ve just made my day, you’ve made my week, you’ve made my month, you’ve made my year, you’ve made my decade with those comments. I can’t thank you enough. It’s a gift for me to be able to be of service to people when they’re going through this very difficult, transformative time in their lives. Thank you for those very kind words. We’re going to wrap up today, Allen, I just want to thank you, again. As we always say here at heartvalvesurgery.com, keep on ticking!
Allen Stendahl: You got it. Will do.
