7 Ways to Help Your Loved One Recover From the Emotional Aspects of a Blood Clot

Blood clots don’t always show clear symptoms that can alert someone that something is wrong. This means a hospital visit, treatment, and recovery period can all come seemingly out of nowhere, leaving patients feeling disoriented. It can also bring about a range of emotions a patient is not adequately prepared to deal with.

“We refer to it as PTSD,” says Leslie Lake, the president of the National Blood Clot Alliance (NBCA) and a survivor herself. “After I had my blood clot, the more I started to learn, the more anxious I became, so I had to actually seek help with this issue.”

Lake suffered from a bilateral pulmonary embolism in 2018 and found that even though she lived in New York City, she couldn’t find much information on how to cope with the fallout from the experience once she left the hospital.

“I walked out of a hospital with nothing other than a prescription,” says Lake. “Nobody talked to me about what happened, what the treatment process is like, or what I should be experiencing. Nobody discussed mental health. Nothing.”

In her search for answers, she found the NBCA’s online Stop the Clot Support Group and Discussion Community and began working with a patient advocacy group to bring awareness to the need for this information.

“As we become more aware of the patient community suffering from this, it’s become a bigger and bigger part of what we are doing,” says Lake.

A Global Cry for Help

This work culminated in the National Blood Clot Alliance’s study, “A Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors,” the results of which were presented at the 2022 congress of the International Society on Thrombosis and Haemostasis (ISTH).

The study polled more than 3,000 venous thromboembolism (VTE) survivors to examine how pain, anxiety, and depression post-VTE impacted their quality of life. Recipients answered the survey between August 2021 and January 2022, making this the biggest study of its kind to date.

Seventy-five percent of respondents reported feeling anxious or depressed after their blood clot; 60 percent reported having moderate or extreme pain; 53 percent reported having some or major problems performing their usual activities; and 40 percent reported experiencing sudden feelings of panic quite or very often.

“A blood clot is a traumatic event,” says the lead study author, Rachel Rosovsky, MD, MPH, a hematologist at Massachusetts General Hospital in Boston. “It can be debilitating and can affect the quality of life on so many different levels.”

But how can you help? Once your loved one is in recovery, what can you do to soften the trauma of a blood clot diagnosis and treatment? Here are the best things to do to help them get back to a life that’s as normal as possible.

1. Legitimize Their Emotions

A considerable part of being the support system is “acknowledging that what they’re experiencing is real,” says Dr. Rosovsky.

Recovery can look different for every patient, and a blood clot survivor may not always understand what is happening.

“I had a patient who passed out and woke up in an ambulance because the blood clot was so large it affected her heart,” recounts Rosovsky. “After that, every time she heard an ambulance, she freaked out and ended up back in the emergency room for another CT scan looking for another blood clot.”

After seeing the patient for several months, they deduced that it was post-traumatic stress and anxiety. Most importantly, Rosovsky made sure to impress that this was completely normal.

At home, listening is critical in helping somebody recover. Rosovsky says that listening to a survivor’s experience and saying, “We can get help for that,” can change a life.

Once a survivor knows you are there for them, the following steps become much easier.

2. Offer to Attend Medical Appointments

The first 30 days are critical after diagnosis, as that is the window with the highest risk of a recurrence. It can also be a whirlwind of uncharted territory, where emotions may override the logical part of your brain. To this end, Rosovsky recommends that blood clot survivors bring a friend or loved one to each follow-up appointment.

“I always want somebody else on the call if the patient feels comfortable having a family member, because so much is discussed in these meetings,” says Rosovsky. “It can be so overwhelming for patients.”

As a third party, you can write down all new information, future appointments, additional providers, and new medications with their side effects so that the person you are supporting does not have to exert more mental energy if they are not ready for it. Organization and transportation can also help in this area, such as keeping a calendar to help them track appointments and transporting them back and forth from their home to the doctor’s office.

At the doctor’s office, ask questions the patient may not think of at the moment; it can save both of you stress down the line. Common questions include:

• How long is the recovery period, and what should be expected emotionally and physically?
• Should we see a counselor or take medication to prevent increasing PTSD?
• How should we relieve clot-related pain?
• Should we elevate the legs while sleeping?
• What is the follow-up schedule for the months ahead?

3. Advocate on Their Behalf

Similarly, sometimes a recent blood clot survivor may not report any symptoms they are experiencing at home to their healthcare team.

“I think a lot of times patients might not be so forthcoming about how they’re really feeling, as they may be confused, ashamed, scared, overwhelmed, or not know how to bring these issues up,” says Rosovsky. “Make sure that their providers really know what the patient is experiencing.”

Ongoing issues like shortness of breath or difficulty with physical movements can be signs of a recurring blood clot or a reason to try a new blood thinner. Make sure your loved one isn’t ignoring these symptoms. Symptoms may seem unrelated to a blood clot, but if they feel something is wrong, have them reach out to their medical team.

4. Offer to Organize Follow-Up Appointments

An entire team may be necessary for a person to heal from a blood clot properly. Make sure that you and your loved one have experts lined up to account for every aspect of recovery. Coordinating multiple providers takes skill and dedication, but this level of organization will reduce anxiety and stress if the patient has problems.

The medical team could include the following:

• Primary care physician (PCP) Make sure to keep the PCP informed about visits to other providers, give them copies of test results, and let them know which medications need to be taken. PCPs can also offer referrals to other experts.
• Mental health professional A mental health professional can help someone deal with PTSD, anxiety, or depression and develop a healthy mindset moving forward.
• Hematologist A hematologist specializes in blood, bone marrow, and the lymphatic system, and is likely one of the first physicians to be seen post-diagnosis. Hematologists will provide blood thinners or anticoagulants and monitor recovery.
• Cardiologist If the blood clot damages your loved one’s heart, a cardiologist can assess potential damage and develop a treatment plan.
• Pulmonologist Alternatively, if the blood clot travels to the lung, a pulmonologist will be the doctor that can help with treatment.

5. Help Them Maintain a Healthy Lifestyle

Maintaining a healthy lifestyle is one of the best ways to prevent blood clots. A review published in the November 2019 European Journal of Epidemiology found that physical activity reduced the risk of VTE.

“We want people getting back to walking and hydrating and getting back in shape to improve quality of life and functionality,” says Lake.

Consider encouraging your loved one to start slow with exercise, or join them in an exercise class. Remember that blood clot survivors may need to reduce usual activities because of pain, depression, or anxiety, or they may be unable to perform routine activities. Small progress is still progress, and the more movement a survivor can do while in recovery, the better their body and mind will mend.

6. Attend a Support Group

Support groups are vital to show your loved they are not alone. There are, unfortunately, plenty of other people who have experienced similar trauma from all different backgrounds. They don’t have to go it alone, but can finding strength in a community. In addition to NBCA’s online Stop the Clot Support Group and Discussion Community, several other options are available, including Facebook Groups like the Blood Clot Recovery Network, Blood Clots: Surviving a Silent Killer (DVT, PEs, VTE), and Pulmonary Embolism Awareness Project (PEAP).

Outside of peer support groups, the North American Thrombosis Forum holds the Newly Diagnosed Patients Support Group, which begins in the fall of each year.

7. Find Financial Support

Unexpected healthcare costs and time away from work can be crippling to blood clot survivors. Blood clots cost the United States up to $10 billion each year, with treatments costing up to $20,000, according to the Centers for Disease Control and Prevention (CDC).

In addition to putting him in unexpected financial straits, piled-up bills may exacerbate a survivor’s anxiety. A study published in AIMS Public Health in 2020 found that if a patient has problems paying medical bills, it can cause stress, anxiety, or depression, even for those with insurance.

Furthermore, depending on how severe the initial blood clot was, patients may also find themselves unable to bring in more money to offset these costs.

A study by the CDC found that people whose blood clots turned into deep vein thrombosis had an 80 percent higher risk of work-related disability than those without. Additionally, those with unprovoked blood clots had a 52 percent greater chance of work-related disability than their peers.

To mitigate some costs, make sure your loved one is aware of all their options. Several pharmaceutical companies have financial assistance programs to cover the cost of medication. Xarelto, Eliquis, Savaysa, and Pradaxa all have assistance programs, depending on a person’s circumstances.