This episode's guest

Jerry Conway after surgeries caused by fluoroquinolones
Jerry Conway
Fluoroquinolone Survivor

Jerry Conway joins me on this episode of Drugwatch Podcast. Prior to taking fluoroquinolone antibiotics Cipro and Levaquin, he was an active, fit 57-year-old man with a good career. But, after he suffered an aortic dissection, he lost everything.

On the evening of October 7, 2014, he drove himself to the ER with chest pain.

“I was admitted to Plano Presbyterian Hospital’s ER, was given last rites,” Conway told Drugwatch. “I had no idea what was going on.”

Fluoroquinolone antibiotics are popular because they treat a wide variety of infections. But, they also have a number of side effects. These include permanent nerve damage, tendon problems and most recently, a connection to aortic aneurysms and dissections — bulges and ruptures in the aorta.

Surgeons performed an 11-hour surgery to save Conway’s life. He had suffered an aortic dissection and a heart attack. While he was on the operating table, he had a stroke.

Doctors gave him a bleak 5 percent chance at survival.

After being in a medically induced coma and four months of rehab, Conway lost his job. He had about $2 million worth of medical bills that forced him to file bankruptcy. He had to live in his car and panhandle when he couldn’t find a job.

He filed a lawsuit against the makers of Cipro and Levaquin after he found studies connecting the drugs to aortic aneurysms and dissections.

Now, Conway says he is just happy to be alive. He found a job but only makes half of what he used to make before the surgery. Daily, he lives with nerve damage and the after effects of the surgery as well as lingering side effects of the drugs that changed his life forever.

He is angry that drug companies never warned him about the dangers of these drugs but tries to stay positive. Conway offers himself as a cautionary tale to others and encourages others to research a drug before taking it.

Last modified: December 4, 2017

Michelle Llamas: Hi there and welcome to another episode of the Drugwatch Podcast. I'm your host Michelle Llamas. Today on the show we've got Jerry Conway with us and Jerry had the misfortune of actually taking some fluoroquinolone antibiotics. In his case, it was Cipro and Levaquin and he suffered a bunch of really serious side effects from them. Jerry is with us today and he's going to tell us about them. Welcome to the show, Jerry.

 

Jerry Conway: Well, thank you Michelle.

 

Michelle: All right, so let's start at the beginning. Tell us how you were first exposed to Cipro and Levaquin.

 

Jerry: Well, I had chronic sinus, and ear, and bacterial infections, and a lot of the other types of medicines, they wouldn't work. Cipro was being hailed as the wonder drug and it really did knock it out of the park with the first dosage. Sometimes it required a second. Even when I tried to go back to the others, they were really bothering my stomach and at the time, they never disclosed any potential risk or hazards that would occur due to prolonged use. I would estimate I took Cipro between 20 to 25 full prescriptions. Levaquin, just two, because when I would workout my joints would start to bother me.

 

Michelle: Of course, you were just happy to have your infection cleared up, right? You were like, "Wow, this drug is great."

 

Jerry: Absolutely. Yeah.

 

Michelle: I mean, they do make people feel better. That's the one thing. They do knock out the bacterial infections.

 

Jerry: Well, prior to this for a 58 year old man I was in exceptional shape. I was on the paleo diet for about four or five years. I would workout hard three days a week at the gym. I would walk five and a half miles the other four days. Living in Dallas, it affords you a lifestyle that you can take your bike out basically almost 12 months a year, other than an ice storm. Saturdays and Sundays I would still take my bike out 25 miles each day, and then Saturdays I would still later on walk, and Sundays I would still later on go to the gym. Then-

 

Michelle: Yeah, you were in fit. You were a fit guy.

 

Jerry: Yes. Yes, I was. Then as 2014 started, like by mid-year, I wasn't feeling that well. Went to different doctors, thought it was maybe stress. A week and a half before I really didn't feel well and then the Tuesday night that was in question, I was taking the dogs out and I felt like somebody was standing on my chest as I was standing up, so I basically drove myself to the emergency room where I later on had not only a heart attack, but I had a stroke while they were trying to put the stents in. I had double bypass surgery and they did an aortic dissection.

 

Michelle: You had a mess of heart problems and all this stuff.

 

Jerry: Yes. It was 11 hours of surgery. They induced me medically into a coma for a month and when I woke up I literally felt like an 18-wheeler just kept running over me.

 

Michelle: Yeah, and I mean, even though you were a fit guy, it was like you were completely knocked on your butt essentially, right?

 

Jerry: And then being told that now I need to heal before they can do a second surgery, and yet my LMS, which I was told was just a benign fibroid in my uterus, this was near the opening of the uterus, which is called the cervix, and they had left my cervix in. And, in fact, the report reported that my cervix was quite large. So I was thinking, "Oh my God, do I still have cancer in me?" They didn't seem to care. I was told by one oncologist, in fact, "Oh, you're lucky if you live two years."

 

Michelle: Oh great. You're like, "Thanks for that."

 

Sarah: Right, right, right. He claimed ... And then, you know, I have to tell you he told me, "You know the problem ... " Cause I came in and I said, "Will you give me a referral to a sarcoma center?" He says, "You know, it doesn't really matter if you go to a sarcoma center or not." And then as I left he said, "You know your problem is? Is that you know too much." That really irked me. I mean that was horrible. I was thinking to myself, "What is this? Why don't they care. I am their physician assistant." And when I thought I had a malignancy originally and they would not allow me to have the surgery I should have had in the first place, which was an open surgery that I asked for. You know, they took the risk that I might have a cancer and not tell me about it. Because sarcoma is undiagnosable. When someone tells you ... When a GYN tells you have a fibroid, they don't know it's a fibroid. It could be sarcoma, it could be LMS.

 

Jerry: Absolutely.

 

Michelle: I mean, after a month of being in a coma, your muscles are just sort of laying there.

 

Jerry: I also required a trache. I woke up in rehab. After that, I went to a more progressive rehab. Went home the day before Thanksgiving 2014. Four days later sitting in the chair watching television, nothing to excite me, my windpipe suddenly collapses. Then I had to have an ambulance take me back to the emergency room and another trache and the whole thing all over again.

 

Michelle: Man, so I mean, you went from being completely active healthy guy to all of a sudden having these issues. They were pretty scary, right? I mean, they were pretty scary issues you were having.

 

Jerry: Yeah. I went from a guy who would walk five and a half miles a day, to a guy that can barely walk to and from the car to get to work.

 

Michelle: Man, so now with all this stuff that was going on, how did ... Did you learn anything about Cipro and Levaquin and a possible connection to any of these complications, or ...

 

Jerry: Well, I did some research after the fact, and then I found out that there were inherent risks that are never disclosed. I'm part of a lawsuit.

 

Michelle: Yeah, so I mean, that's with them. I know that, of course, these cases are still going on. The thing with these fluoroquinolones is they're actually pretty bad news. I mean, they cause a lot of side effects. Again, like you mentioned, doctors really don't talk about them and-

 

Jerry: Yes.

 

Michelle: I mean, there's really poor information out there. Unless you do some serious digging, you're not going to find this stuff. The average person is going to end up with, I believe, some of the other complications you could have are nerve damage, muscle damage, all this other stuff.

 

Jerry: Which I still have.

 

Michelle: Yeah, and so you have that too, right? You basically have whatever else, including in addition to the heart issues. You mentioned the aortic dissection, which is a serious thing there.

 

Jerry: Well, they took eight inches of the vein out of my leg to re-harvest my heart, but I still have very poor blood flow. I can feel the sciatica going all the way up, lower back issues. My left hand is still swollen. Basically, one half of my body is fine and the left side isn't.

 

Michelle: Gosh, and so this is stuff that basically you've ... I mean, you've been dealing with this now for quite a while, some years now.

 

Jerry: Absolutely, yep.

 

Michelle: With all this stuff that is gone on, what kind of treatments did you have to go through to heal yourself after all of this, or at least start the road to recovery anyway?

 

Jerry: I go for very, very painful lymphatic massages. One of the people who do this ... This is every week. It costs me $100 a week and insurance does not cover that, so that's out of pocket. By then, that's $5,000 that you would have normally in the bank that you have to ... You can't even miss a week, because the difference ... Like tomorrow, if I were to miss tomorrow, I'd be in agony because I'm just barely getting by today. They work a lot of the muscles. Sometimes, you're almost in tears and it's really, really painful, but you just have to keep gutting it out just to get to the next week.

 

Michelle: Now, have these things sort of been helping you a little bit? Have you been improving at all, or pretty much the same?

 

Jerry: Well, if I didn't have to work, I could probably go to the gym, ride the bike, swim, and stuff like that to build up my leg. The massages that I'm getting every week could kind of carry over week to week a lot better, but I'm making a half of what I used to make. When this thing happened, I lost my job. I was very well paid and now I'm making half. That's an adjustment for anybody, but when you have to take your life savings, and you exhaust that, and you're forced to file medical bankruptcy, you have nothing to really go after for a rainy day fund.

 

Michelle: Yeah, so in addition to the physical complications you had, I mean, your whole life was basically altered and changed. Financially, everything.

 

Jerry: Yeah, and the thing is though, anything that happens that when you have a bad day, I just close my eyes, I take a deep breath, I know that I've been through worse, and that's what gets me by. Even when I'm on the call right now with you, there's still a lot of collateral damage with my throat, because they said that's what happens with a trache, and I had two traches, not just one. They do the best that they can. You can't fault the doctors that operated on me and I don't want to make it sound like that, but we found out that my ribs weren't aligned properly. We spent a lot of time and it was a lot of painful processes, but that helped my breathing an awful lot better. We do incremental stuff, but like I said, the law firm tells me it's still another two to five years to settle. Once that settles, my plan is just to still live a spartan lifestyle, be able to just take care of myself, and improve the quality of my life.

 

Michelle: Now, so you mentioned the lawsuit here real quick. What led you to that? When did you decide to file after all of this?

 

Jerry: I found that, basically I think, on Facebook, but I knew I found it on the internet. That really picked my curiosity, because when they said about aortic dissections, and aortic aneurysms, dissection being the worst of the two, and that's what I had. I not only went through that article, but I went through a host of other things and found out, "Wow, this is a pretty scary thing and I wish I knew this much sooner than later."

 

Michelle: On top of that now, let's talk a little bit about what you would tell some other people that might be suffering with some issues with the fluoroquinolones, whether it's dissections, or just the muscle problems. Do you have some messages for them?

 

Jerry: I felt perfectly all right until several weeks before this even happened. When you're on the paleo diet, you're exercising, you're doing something physically every day, and then all of a sudden something ... You're just not feeling right. I just couldn't find out what it was. I went to various doctors. I went to a heart doctor. I went to a neurologist. I went to my general practitioner. I had to go see other specialists, ear, nose, and throat. It was just very, very frustrating just knowing your body, knowing that something's not right, and just not being able to isolate it.

 

Michelle: If people have taken fluoroquinolones, for instance, and are starting to feel kind of bad, or any of this stuff, would you suggest then that they start taking it seriously and really trying to find doctors that can help them?

 

Jerry: I would say regardless of your situation, how advanced you are taking these two medicines, stop immediately. I'm on a crusade. That's my main goal. I don't have any enemies, but I would never want anybody, I repeat, I do not want anybody to have to go through what I went through. When I was in the hospital the second time, I was on as many as 19 different medicines. I walked into the hospital October 7th of 2014 207 pounds. I was very, very fit. 5'10. I didn't have a washboard stomach, but if I took off my shirt I wasn't the least bit embarrassed. When I walked out four months for the last time, I was 163 pounds and a shell of myself.

 

Michelle: You caution anybody then against ... Maybe if there was alternatives to Cipro or Levaquin that they should really take a look at those.

 

Jerry: Absolutely. Even before this happened to me, I was more of a person that just took the medical opinion. I don't want to go to the doctor if there's something wrong, rather I want to get my body in shape that I can withstand something. Because my goal was, being single, not having a family, I could afford to just workout anytime I want, like I did. At the end, I wanted to just donate my body to medical science. I wanted them to take every organ, cell, whatever they could for stem cell research, take it. You can have it for free. The only thing I'm asking is that you cremate me and bury me in a place of dignity. Little did I know, all these things that I took with the understanding of trying to give others a quality of life, was the one thing that probably saved my life, other than the grace of God.

 

Michelle: You kind of have a really nice sort of outlook on everything, though. You've got some hope on the other side of this. There's plenty of people that have had their lives pretty much turned upside down from all kinds of-

 

Jerry: Absolutely.

 

Michelle: Different drugs. You have a really positive thing to say. What would you share with these people that are going through this?

 

Jerry: Just be careful of every kind of drug that's out there. I'll use the point of reference from 60 Minutes. Normally when they would have a drug there, they would tell you what the benefits of taking that drug, and for a 60 second commercial, maybe 25 seconds they're telling you how great this drug is. Unlike in the past, these drugs are no longer, "Causes dry mouth. May cause drowsiness." These are drugs that cause in various different types, can cause cancer, near death experience. You make suicidal tendencies. These are very, very dangerous drugs. In this instance, with Cipro and Levaquin, it just angers me that just this hasn't been promoted with the masses with the understanding that these things could happen.

 

Michelle: Yeah, and they've been around for a long time, and that's the crazy thing about it. They've been around a long time and they've probably hurt countless numbers of people since they've been released.

 

Jerry: Yeah.

 

Michelle: No one really talks about it. Unless you're online, because you find a lot of people sharing their stories there.

 

Jerry: You want to know what my opinion is? Scientists that run the numbers for things, like the Ford Pinto, they made a decision, a calculated decision that it was better to keep up the production knowing that the car was faulty with the gas tank, knowing that people would die, or be disfigured, or harmed in some way. To them, they made a financial decision to keep promoting it, rather than just yank it off the market. These drug manufacturers, they have these actuaries that probably run numbers knowing that, "Hey, we're going to do a payout, but we can make all this extra money," and they look at it as business.

 

Michelle: Yep. No, you're absolutely right. They look at the risk and benefit and they think, "Hey, even if we have to pay some settlements for this, we've made billions."

 

Jerry: Yep.

 

Michelle: They've made their money. Unfortunate that that's the way it is, but they're not in the business of health. It's more like the business of money for them, so you're absolutely right. Thanks so much for being on the show, and sharing all this insight with us, and for giving people a little bit of hope, and some cautionary tales there. I think awareness in this sort of thing is really key. Like you said-

 

Jerry: Absolutely.

 

Michelle: You're on a crusade, so appreciate everything that you've done, because if you can just reach one person and save them from this, I think-

 

Jerry: Absolutely.

 

Michelle: You've done a good thing. Thanks so much for being on the show, Jerry.

 

Jerry: Okay, thank you Michelle. You have a good day.

 

Meet Your Host

Michelle Y. Llamas is a senior content writer. She is also the host of Drugwatch Podcast where she interviews medical experts as well as patients affected by drugs and medical devices. She has written medical and legal content for several years — including an article in The Journal of Palliative Medicine and an academic book review for Nova Science Publishers. With Drugwatch, she has developed relationships with legal and medical professionals as well as with several patients and support groups. Prior to writing for Drugwatch, she spent several years as a legal assistant for a personal injury law firm in Orlando. She obtained her English – Technical Communication degree from the University of Central Florida. She is a committee member with the American Medical Writers Association.


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