By Aditya Bhave, Freshman, Forsyth High School, Cumming, GA, Member, GTF

Aditya

Have you ever thought of what happens to patients who are treated for diseases that require lifelong treatments? How do they cope with it? Most patients are properly diagnosed and treated, but are they really off the hook? Does life go on as usual for them after their first attack?

Most people think ‘all is well’, once patients are out of the hospital. It is a human psychology to believe everything is alright and life is back to normal for such patients. On the contrary, there are countless number of long term conditions, where this is not true. Examples of these long term conditions include asthma, diabetes, epilepsy, skin conditions, high blood pressure, heart disease, arthritis, DVT, PE, Alzheimer’s and stroke and there are many more. A long term condition is defined as the one that lasts a year or more and which may affect any aspect of a person’s life. Long term conditions may be life threatening and can affect people physically, mentally and emotionally.

As an active member of GTF to spread awareness about DVT and PE, my focus in this article is to study and write about the journey of patients with these two deadly conditions, and their impact on physical and emotional well-being of the patient. Since I wanted to add a personal touch to the essay, I interviewed Georgia Senator Renee Unterman. She had suffered from DVT in the past and she avidly supports our cause. Some of the excerpts of the interview have been added in this article.

The Georgia Thrombosis Forum has interviewed many former patients of thrombosis to shed some light on the patient’s perspective. Among these have been Rose, who suffered from cerebral thrombosis after she delivered her second baby, Rajan, Dr. Laddu’s grandson, who suffered from 2 attacks of bilateral pulmonary embolism, and Mr. Pundi, a CEO who suffered from DVT and PE. Even my great grandmother died from a heart attack caused by a blood clot. This just goes to show how prevalent thrombosis is in our community.

My research shows that no age, and no designation is exempt from the dangers of thrombosis : Let us look at these patients : Pundi (businessman), Rajan (Student), Rose (housewife), Senator Unterman (Politics). What about the famous Serena Williams ? She still plays tennis after her attack of thrombosis.

Like most of us, I was completely unaware of the fact that a disease like DVT can cause such an impact on patients, until I met Sen. Renee Unterman. She has suffered from one attack of DVT, and actively supports our group in its cause. In one of our discussions during my GTF awareness presentations where she was the guest of honor, she casually mentioned to me that she has to be extra careful about certain things she does as a precaution to avoid another attack of DVT. It really got me thinking about life past DVT. I wanted to know how DVT impacted patients in their day to day lives after getting treated for it.

Many people like to believe that once they are cured of DVT, nothing bad will happen to them. Unfortunately, this is not the case. There are many side effects and consequences that can be called “the aftertaste” of DVT, such as lifestyle changes, risk factors, and medications. Patients may be admitted to the hospital for a single attack but may have to continue their medications for the rest of their lives to remain risk or disease free.

The impact of DVT on patients can be multi-fold. Firstly, the patients can be impacted due to side-effects from long term medical treatments. Most of them have to make life style changes to make sure they do not end up in the hospital again. The family of the patient also needs to make some significant adjustments in its own life style. Lastly, it can in fact impact the patients physically as well as emotionally.

Deep Vein Thrombosis (DVT) occurs when there is a formation of a blood clot in the calf veins, which spreads into the larger deep veins of the leg. This could lead to life threatening conditions such as pulmonary embolism, the 2 commonly known as venous thromboembolism. Patients with DVT can be treated in multiple ways. One way, for example, is through medications. However, this can have good and negative effects. Some people have what’s known as a hypercoagulability disorder. This means that they’re more prone to blood clots than others. People who have a hypercoagulability disorder may not even know it until they experience their first episode of deep vein thrombosis. In more serious cases, patients may be put on an anticoagulation medication for life. Coumadin (warfarin) is one type of anticoagulation medicine often used in DVT treatment. Patients who are prescribed Coumadin are required to be regularly tested to maintain a certain level of the medication (INR, the international normalized ratio test) in their system. However, Coumadin (warfarin) can have some dangerous side effects,, depending upon the level of anticoagulation.  Because Warfarin is an anticoagulant, the blood will not clot as easily. Patients have to be careful to avoid injuries because they are at risk for heavy blood loss. Some other side effects include major rashes, swelling, joint and muscle aches, chest pain, difficulty moving, and even diarrhea. Patients are severely at risk if they also take other medications.

Patients may also experience some physical difficulty along with some lifestyle changes. Many patients are forced to give up sports or hobbies that require physical activity to avoid injuries. This can affect people emotionally in a huge way.

Patients might have difficulty to cope with these adjustments and can sometimes trigger anxiety, depression and other psychological problems. Many patients experience shock when they are initially diagnosed with the condition and have difficulty coming to terms with the implications this might have for them, having to take daily medications, making lifestyle changes, or the realization that there may be no cure. They can experience lack of understanding from family, friends or employers which can lead to feelings of isolation and loneliness. Patients can become socially excluded if their condition leads them to lose contact with their social networks or they have to give up work. They can experience a range of emotions including fear of what the future may bring, frustration, anger and resentment and loss of self-esteem because they are more reliant on other people, because the condition changes their view of themselves or the way others see them. In my interview with Senator Unterman she told me “The family support was important; I couldn’t have done without it. It’s crucial that you have that family support, and if you don’t have family nearby, it’s important to have professional support, because it really is a devastating process that you have to go through.” Based on these experiences, it is clear that these patients go through a lot and family support is crucial to help them get over such a life-threatening experience.

Patients who were severely afflicted with pulmonary embolism and may have gone through a surgical thrombectomy may have recurring chest pain. Former DVT patients, especially seniors, might have difficulty moving and performing simple tasks such as walking up and down the stairs. From her own personal experience, Senator Unterman had trouble recovering from DVT. She quoted “After I had been treated, I could barely walk. I was in a wheelchair for a long time, then on crutches. I had to rely on other people for a long time.” Depending on the severity of the attacks, it looks as if these patients need a lot of assistance to recover. The same point is proved in my research. According to the 36-Item Short-Form Health Survey (SF-36), a generic quality-of-life measure, former patients with thrombosis had poorer perceptions of their health, lower levels of physical functioning, and more severe role limitations due to physical health than asymptomatic patients. A study of the long-term effects of DVT showed that among 21 patients followed for 10 or more years, 11 of 12 men were disabled and unable to maintain a steady job because of their leg symptoms, and 7 of 9 women were unable to perform household duties and required a homemaker.

Another impact to patients is the recurrence of DVT after the first attack. The risk factors and vulnerability exponentially increases for former patients. Over 30% of former DVT patients develop a blood clot within 5 years of the first. This is basically saying that if you have had DVT in the past, you are at a much greater risk of getting it again in the future. This can lead to lifestyle changes, in which patients have to become healthier to reduce their chances. Also, patients are at greater risk of getting other chronic diseases. I explained to Senator Unterman that some former DVT patients might experience fear because of their vulnerability to another blood clot. She responded “I don’t necessarily have fear towards another blood clot. I think that’s partly because I’m a former nurse and I am educated about these sort of things. With that said, I do exercise caution and try to take actions to prevent a blood clot as much as possible.” Exercising and staying active is a good way to prevent a recurrence of DVT.

Despite all the above mentioned complications that past DVT life can pose, I strongly believe is an old phrase that goes ‘Life is 10 percent what you make it, and 90 percent how you take it’. I consider Senator Unterman a role model for all DVT patients. She is as active as she can be. Looking at people like her, I strongly believe that ‘life really goes on even after DVT’. But, unfortunately, not many people are as lucky as she. There are some patients that have to give up a lot just to remain healthy and disease free.

This study has made me realize that simple things like walking, biking, and basketball that I take for granted can be the most yearned for activities for some patients with DVT & PE. It has truly inspired me to help people with these diseases in any possible way to improve their quality of life. Along with spreading awareness, I have decided to lead this effort within our patient support group to make a difference!

I asked Senator Unterman what advice she would give to former DVT patients to encourage them to not give up. She replied “It would be encouraging to know that life still goes on. I still ride my bicycle, I stay active and get exercise, and that’s all part of the prevention process.”. I want to spread the message to all DVT patients, former ones and current patients that don’t let it break you, no matter how hard things get, life goes on…