Bart Coyne, a heart transplant patient, experienced deep vein thrombosis (DVT) and pulmonary embolism (PE) in April 2017. Here is his story about how a positive attitude and the support of others has helped him manage his life after DVT/PE:
What has your experience with heart disease and blood clots been like?
In 2000, I had a heart transplant.
Immediately before it, I was active. I was playing ice hockey a month before. I didn’t really have any signs or symptoms of needing any serious heart surgery or even knowing that I had a heart issue.
When it started, I developed some breathing complications. I went into the hospital and had an aortic valve replacement, which was calcified, and four days after that pretty much everything went south.
I ended up getting a heart transplant. I got the heart transplant on my birthday, which I guess was a nice birthday present.
After that, things went along very well. Other than the annual evaluation looking for any kind of rejection on the heart, I never really had to visit the hospital. I didn’t have any complications. And then, in April of 2017, I was diagnosed with deep vein thrombosis and bilateral pulmonary embolism, which seemed to come out of nowhere.
I really didn’t have any symptoms, other than a small amount of chest pain on a very deep breath intake
With the DVT and PE diagnosis, I didn’t experience a lot of pain. It came totally out of nowhere and was a complete surprise. I didn’t really know what to expect.
How is your recovery going? What kind of treatment are you on?
Right now, I’m on Coumadin.
I know there are several other options besides Coumadin, but with my heart transplant that seems to be the basic care they wanted.
I don’t experience any breathing issues right now. I’m very active. I exercise. I swim. I bike ride. But, I really don’t know if the blood clot is growing while I’m on anticoagulants. Is it going to go away? The doctors seem to indicate that that’s a question that really doesn’t have a definite answer for any one individual. I think that all cases are a little bit different. And that’s probably the biggest thing relevant to this diagnosis that I’m not sure about.
What do you feel the most anxious about?
Well, there’s uncertainty with the diagnosis. There’s an anxiousness, because you don’t know a lot. If you get a pain in your leg, is this the pain that’s related to the blood clot or is it just a stretched a muscle?
There’s a lot of just not knowing what some of the symptoms might be or what some of the symptoms may develop to be going forward.
How did you handle all of this?
Well, Diane, my wife, is a nurse and a great support person. She’s helps me understand what’s going on as far as the diagnosis. She helps me research and look into a lot of it. She understands it a lot better than I do, when it comes to some of the effects and the medications.
In general, I’ve been fortunate that I’m a very positive person. Both the heart transplant and the DVT/PE diagnosis for me did not come with a lot of pain or advanced warning. I really didn’t even know I needed a heart transplant until probably a week and a half before I ended up getting a heart transplant. I didn’t know there was even a possibility of having a DVT or a PE until the evening I was diagnosed.
I experienced no pain and that’s allowed me to go into all of these experiences with a very positive attitude, because I didn’t labor with a lot of issues in advance. Having been diagnosed, listening to the doctors, and having received great treatment in both cases, I can keep a very positive attitude about going forward.
My make-up is to be extremely positive in pretty much all aspects. It’s not anything that I can change. I certainly can’t go back and prevent either of the two from happening.
With the DVT and PE, which are my newest diagnoses, it’s just a matter of listening to what I’ve been told, doing a small amount of research on my own, talking to the various doctors attending the support groups, and meeting people similar to myself, who have had the same exact experience in their own individual ways.
I find it very easy to say, “Okay, this is just another development that I have to overcome. I’m not going to dwell on it. I’m not going to be more concerned than I need to be because that can have negative effects.”
So, I pretty much tackle all situations, whether it be professionally or personal, with, “Alright, let’s solve this problem.”
You know, life’s really good. I have three children, four grandchildren, and a very supportive wife. That makes it a lot easier to really tackle some of these issues.
Bart and Diane connected with Dr. Samuel Goldhaber, president of NATF, and decided to attend NATF’s in-person support group.
What has your experience with NATF’s support group been like?
It was new a brand new experience that neither Diane or I had experienced. We just decided that the support group would be something that we could both learn something from. It really enhances Diane’s ability to support me and help me make some of the decisions I need to make.
The support group has supplied education and the opportunity to meet people who have experienced the same type of thing. It turned out to be a group of really sensational individuals that are dealing with this disease. Support group was very encouraging. It reinforced that it wasn’t just me who had this issue. It became very clear that life after DVT/PE is certainly a possibility and a real positive possibility.
The fact that Diane and I have been able to attend the support group and learn from the experiences of other people has really worked well for my situation. I deal with all these incidents with a very positive attitude. I’m not going to let it slow me down. I know coming out on the other side is going to be a very positive result and the support group has really allowed me to listen to people and listen to the doctors. I get a close, first-hand response from the doctors and that feeds into my very optimistic view of how I’m going to work my life, or how I’m going to live my life.
I think it’s allowed myself and Diane to go forward in a very positive way to overcome this particular diagnosis and this particular disease.
Thank you, Bart for sharing your experience!
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