Everything I know about life with an LVAD

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All about the LVAD blood pump

Author’s note

Hey, Friends! This week marks my fourth year after my HeartMate 3 LVAD pump surgery. I have gained some insights along the way, and I thought I would begin to share. So, we have decided to publish our “All about the LVAD blood pump” post to celebrate this milestone.

This blog post will be an information hub on everything I am learning about the LVAD blood pump. Clearly, “everything” is a tall order. But it will be a comprehensive article for anyone learning about life with the LVAD blood pump – whether you are a heart patient yourself, a caregiver, or a medical/public health student or professional.

If you are a VAD recipient, caregiver, medical professional, or merely knowledgeable about this therapy system, any comments and insights would be welcome. This post will be a living document that we will update as time goes.

There will be links to other posts of mine and videos throughout this post, and here is a table of contents, so you can also easily navigate the content.

Enjoy!

Table of Contents

– Last updated – Jan 11th, 2021

– Recent changes: N/A

At the 2019 Boston Heart Walk Photo by Boston Herald

Introduction

If you are reading this post, you may be considering this advanced therapy or caring for someone who is here to learn about living with an LVAD blood pump. I can empathize with the complexity of this journey. I know it is not easy. I also know that the more information and insights we do have, the stronger and more confident we can be.

Living with heart failure is challenging. It entails continuously adapting to changes, adhering to complex medical therapies, and dealing with self-care needs. Life as a Patient With Heart Failure involves, amongst others: Symptoms, Self-management, Medications, Side effects, Office visits, Hospitalization, Diet Restrictions, Financial burden, and Support systems.

I have been taking plenty of notes throughout my journey, researching and having conversations with other patients (including heart patients and LVAD patients), health advocates, my medical team, and other medical professionals. I am putting a big part of this information here, hoping that somehow it serves more people. Many vital people have supported me from the beginning of my journey and crucial moments, and they made all the difference.

My Story

You can check-out my full story here.>

Let’s start with a timeline of my life and journey with my illness so far.

My family and me 2020
My timeline (last updated Dec 2019).

In January 2017, at the age of 30, my medical team implanted an Abbott HeartMate3 LVAD inside my heart. I did not see any of this coming.

Inside of the macro story of my diagnoses of dilated cardiomyopathy (DCM) in 2012 while in South Africa, discovering that my condition was Left Ventricular non-compaction Cardiomyopathy (LVNC), acute end-stage congestive heart failure and my prognosis for heart transplant 2016, in Sacramento, California, then moving to Boston, are all many smaller segments of a journey learning, courage, (re-)designing and (re-)planning and rebuilding of life.

I went from an active lifestyle, playing multiple sports and feeling like I was on top, to wondering how much time I may have left with my wife and our first-born. I went through traumatic times and often feeling helpless and discouraged. I have been terrified. I have been shaken to my core more times than I can count. My family and I moved from our home in Dakar to Boston to continue my medical care and live closer to my wife’s family. I experienced many steep learning curves, getting a wrap on my heart condition, medication, treatments, and prognosis.

Living with an LVAD is quite a learning process, and an intense one. Getting the pump, recovering, going through rehab after surgery, day to day activities, and much more. I had to do a lot of my learning on my own. I was also helped along the way by many incredible people. With time, we found a good flow and routine to managing all aspects of the LVAD therapy. I adhere well to my meds, restrictions, eating right, exercising regularly, being a husband, and parenting our boys, childcare,… It takes time to find your groove with such a significant life change. Routines and consistency help to manage all of this.

Every patient’s story is unique, but there may be similarities or just share notes. I hope that the information here can help shed some light on the kind of questions you may ask yourself. Whatever happens, know that you are not alone and that you will come out of this stronger than before!

What is an LVAD pump?

I have the HeartMate 3 LVAD system which is made by Abbott.>

LVAD stands for “Left Ventricular Assist Device.” It is a pump that is surgically implanted and battery-operated. It is a mechanical circulatory assist system that helps the left ventricle (which is the heart’s main pumping chamber) pump blood adequately to the rest of the body. It is used often for patients who are at end-stage heart failure. Generally, patients at that stage only have one option – receive a heart transplant and continue living a full life with a new heart. However, there is a much higher demand for organ donations than there are donor’s hearts.

Many factors contribute to whether a patient is an excellent candidate to receive an LVAD pump. This convenient Instagram post from an advanced heart failure cardiologist explains the ins and outs of the LVAD pump and who is the right candidate patient for this. Some patients (like me) need an LVAD pump while waiting for a heart transplant (BTT – Bridge to Transplant). Others receive Destination Therapy (DT), which is final rather than being transitional like in BTT. A third scenario where a pump is implanted into the heart to strengthen the left ventricle over a short period.

The System

The LVAD system consists of a pump inserted inside your chest between the left ventricle and the aorta. It pumps the blood from your heart to the rest of your body, thereby reducing the load on your heart, which no longer needs to do all this work independently. But the heart keeps beating. The driveline cable comes out of your belly. This cable carries the wires for the power supply and the communication to the system controller outside the body. This exit area of the driveline needs always to remain dry and clean. This involves cleaning and changing the dressing weekly.

You need to be connected to a power source (or batteries). Charged batteries hold for up to 17 hours. I either carry two batteries with me, or I use the wall cable. I have four extra batteries. When I travel, I take these with me, instead of the wall cable. Suffice to say, make sure you have enough batteries :-).

HM3 system components (Abbott Cardiovascular)

The first implantation of the HeartMate3 was performed in 2014. This article summarizes the advanced technological and clinical aspects of the HeartMate 3 LVAD. You can learn more about the therapy and how it can help patients with advanced heart failure at this link.

I had the opportunity to meet Abbott’s good folks on a few occasions, both in Burlington, MA, and Pleasanton, CA. They appreciate seeing face to face the people who are helped by their technology, and for me, it gave me a chance to get to know them better and talk about the future technology they have in the works. For the future, Abbott is looking to make things even simpler. Ideally, we would have the whole system inside the body – with no external cables, and no cleaning and caring for the dressing needed… This innovation should hopefully come to life soon.

The surgery

I share the details of my own experience on my journey here. We are talking open-heart surgery, with about two weeks minimum at the hospital. Two weeks is not so much an average than it is a minimum and it can vary greatly. I stayed a week longer due to a high fever, and my doctors did not want to take any chances. I know of other LVAD recipients who remained in the hospital for several months.

Preparing for the Surgery

I arrived in Boston already with a diagnosis and a health plan from the Sutter Health Sacramento team. The objective was for me to become a candidate to receive a heart transplant, and while I wait, I would get an LVAD pump system inserted in my heart. When I arrived at the Brigham in Boston, Massachusetts, my new team confirmed the proposed plan.

  1. Confirm the health plan, meet the team, doctors, nurses, financial team, psychologists’ team, behavioral, surgeon…, and be put on the heart transplant list.
  2. I picked the HeartMate 3 LVAD, which was the newest technology with promising outcomes.
  3. The medical team took the time to explain how LVAD works and ‘train’ the whole family on the technology – how it works, restrictions and sternal precautions, and more about living with the LVAD and emergency steps to follow when needed.
  4. We also watched a video (Warning: Graphic Images) on how the surgeons and their teams surgically insert the pump.
  5. Go time! On a Monday, I came in, and my LVAD implant surgery took place two days after – Wednesday, January 11th, 2017.

My goal was to stay at the hospital for one-week post-operation, a few days in ICU, and then the rest recovery. The nursing team and their occupational health colleagues aim to get you up and walk ASAP before preparing your discharge. As I mentioned earlier, it does not necessarily work like that.

It is the second part of my ICU stay that was challenging. On Day 3, after the procedure, I could get up on my feet and slowly walk. But I began having irregular heartbeats known as AFib. This was a significant setback in addition to my high fever, which slowed my recovery. Thankfully, the team got my heart rhythm back to normal. After two additional weeks under observation, I was discharged and cleared to go back home—a few after, my high fever went away by itself.

At the ICU - 2 days after the LVAD implant

Recovery from the Surgery and Getting back to Work

After ten (10) weeks, the surgeons confirmed that my chest bone had healed and resealed well. At that point (April 2020), my VAD coordinator team referred me to join a cardiac rehabilitation program. I graduated from the program after three months. At that point, I looked for a martial art center and resumed practicing again. By September, I was offered a part-time job at the Apple Store.

I started to work an average of 20 hours. I was able to work over 30 hours at some point. I saw that my body could handle the work. In July 2019, after close of 2 years at the store, I went back to working full time supporting energy efficiency market transformation strategies and measures. I joined a US/Canadian consortium of utilities and energy organizations that has been influencing markets to accelerate the uptake of increasingly efficient goods and services for over twenty-five years.

Cost Factors + Insurance

Costs and insurance will vary significantly per country, within the USA per State, and each person’s work and health situation. I can speak to a few of my own experiences. At the time of my operation, I first used the Allways Partners Health plan (ex-Neighborhood Health Plan) until 2020, when I switched to Blue Shield Blue Cross (BSBC).

In 2016, the Massachusetts version of Medicaid under the Affordable Care Act covered my medical insurance. In 2017 with the shift in regime in the US, a significant portion of the financial support was removed, which doubled my monthly insurance fees.

When I started working (part-time), I was no longer eligible for Medicaid. With my income rise, I got my insurance through the Massachusetts Health Connector. Then, when I moved to a full-time role, my insurance fees and the coverage changed again. At that time, I began to pay double what I initially paid for my insurance fees and co-pays. And when I started working full-time, my costs went up to over five times more than the initial costs. It is always a tough balancing act between working and affording life’s expenses, including childcare. After a while, it made sense for us to consolidate our household insurances and switch to my wife’s insurance.

Despite the insurance, we do occasionally get some medical bills amounting up to several thousand dollars. We do what we can to spread out the costs over time. So far, it has been manageable. My medical team and the hospital’s financial teams help ease the process and minimize the financial burden as much as possible. We work on coordinating with the pharmacies for pick-up or, more recently (since the pandemic), I can have my medications delivered. The ease and regularity of access to drugs are important because I take more than ten pills a day!

My medications therapies cover various facets, including controlling blood pressure (BP), avoiding blood clots… Keeping my BP under control is required to decrease stroke risk. I also take some multivitamins, anti-acids, anti-allergens, and melatonin supplements.

Living with the LVAD

Living with the LVAD involves many precautions, such as safety at home, staying active, and being more stringent on hygiene matters (washing hands often, brushing teeth, showering, and regularly changing the dressing area where the cable comes out of your tummy).

Having an LVAD comes with significant changes to life, such as:

  • LVAD is not waterproof, but it is safe to shower using the shower bag.
  • Following a healthy diet and nutrition, keeping your metabolism active, hydrating well,
  • Maintaining safe physical activity levels,
  • Adhering to taking your medications as prescribed,
  • Regular blood tests and clinic follow-ups (initially once every week, then once a month, and up to once every 6 or 8 weeks, depending on the patient’s health state),
  • The check-ups involve visits a few times a year for x-rays, echo, or right heart catheterization.
  • Also, the Bio-engineering team would also check and calibrate the LVAD and its peripherals.

There are a few things we do not readily realize about the LVAD at first:

  • You can hear the LVAD pump running inside your chest. At the hospital, we did not recognize this. Medical staff moving in and around often your room, medical equipment continuously beeping. It is after I returned home and first found myself alone that I heard the sound. It is quite an exciting sound. You can listen to my heartbeats here.
  • The LVAD batteries on your sides could look like gun cartridges. For a very tall Black man living in America in the current times. Often, I would get looks from people. In most cases, when asked, I do my best to explain what they are seeing. In other instances, I joke with the people about the comments. I take this all-in stride and make it part of the public’s education about LVAD therapy and heart failure, in general.

General Hygiene and Health Precautions

I need to remain vigilant about the LVAD pump in my heart and external peripherals (cables, controller, and batteries). I must alwyas be meticulous about keeping the driveline exit-site in my tummy dry. I change the dressing every week.

Active Life and Fitness

(even running a little – my medical team recommended against running).

My fitness and energy levels steadily improved over time after I graduated from my cardiac rehab program. I went from feeling exhausted all the time, not being allowed to lift more than 30lbs (my son was 40lbs), to now where I can keep up with the twins and even lifting both at times. I focus on building up my stamina and endurance. Thankfully, these came back quickly after surgery.

LVAD-Friendly Clothing

I have a percutaneous cable coming out of my belly and a controller I keep on the side of my waist. This affects what I can and cannot wear and how I look when I dress up. See one of these videos (video1 or video2) of me wearing a specialized LVAD undershirt I bought online.

Air Travel with the LVAD

In June 2019, I shared a video about my airport security experience and flying with my LVAD pump.

I cannot enter the metal detector or scanning device with my VAD system as this may interfere with the VAD computer controller system. VAD equipment cannot go through x-ray scanners. Also, the carry-on essential VAD equipment must always remain in my possession as a safety precaution. When going through security checks at airports, I notify the teams that I choose to opt-out of the standard procedure due to my medical devices. I always prefer to proceed with the checks in public for more transparency and increased public awareness.

Showering with the LVAD

I get the most questions about are how I shower with my LVAD. The LVAD should not get wet and never submerged in water. However, showering with the LVAD is doable. It is just a little bit of extra work. In general, a person’s breastbone takes a few weeks post-open-heart surgery to heal and reseal. The team would recommend several sternal precautions to follow. During that time, I used wet wipes. Thankfully, after a month, that changed. In the beginning, showering was very tedious and tiring for me. It took me over an hour. Past that point, showers become more comfortable and more manageable.

Before taking my showers, I must first protect the LVAD driveline exit area. I use two 8×12′ self-adhesive films, which I overlap horizontally on my stomach. And before that, I place two paper towels between the dressing and the films. These would soak in the moisture or any water that would pass through. I adapted rapidly to the new norm. These days, I can be ‘taped up’ and my equipment in my shower bag within about 5 to 10 minutes.

Diet and Nutrition

Watching my salt/sodium intake is a prerequisite. As part of my LVAD therapy, I take blood-thinning medications on top of the multiple heart meds (or anticoagulants). This is to reduce the risk of thrombosis (blood clotting). I also must follow some additional nutritional precautions because certain foods can influence the effects of these medications.

Foods high in Vitamin K such as dark green leaves, vegetables, avocado, and asparagus can decrease blood thinners’ effectiveness. Juices like cranberry juice can increase the anticoagulant’s effectiveness and cause the blood to be too thin (So does alcohol, which, luckily, I have never drunk). Another precaution is to be consistent in eating the same amount throughout the week. Lastly, I actively work with my nutritionist/dietician and medical teams to adjust and adapt my dietary plan over time.

The Medications

I have quite a few medications to take. Currently, I take about 19-20 pills a day. I need to make sure I continue to take my meds regularly and have sufficient medications on hand and for back-up at all time. Along with home test supplies to last when future deliveries are delayed or canceled for unforeseen circumstances. Watch me organize my medication box for the week, every Monday.

PT/INR Home Test and Monitoring

Because I am on blood thinner medication, I need to regularly test for any bleeding disorder or excessive clotting disorder weekly. Usually, I would go to the clinic for this test. But, in 2019, I was planning to travel back home for a few weeks. To ensure I continue to do the weekly test, my VAD team prescribed a home INR monitoring system. With that, I could do my test at home and log the results through an app—the Anticoagulation Pharmacists at the Brigham, monitor and recommended changes in my meds as needed. Unfortunately, I did not get to travel as planned. But luckily, I got to keep the PT/INR home monitoring system with me.

Doing the tests at home saves me weekly trips to the hospital blood labs. When my results fall out of range, the Anticoagulation pharmacists call me to make the adjustments required. I also coordinate with them to keep the device calibrated. So far, with the generous help of my boys, we are doing good with the home testing.

Acelis Connected Health (ex-Alere Home INR Monitoring) provides the medical supplies for the testing in addition to my weekly dressing kits and adhesive films for showering.

On Mental Health and LVAD

Adjusting to living with the LVAD is mentally challenging. My biggest challenge is to mentally deal with the constant changes and adjustments – including my day-to-day life and my adapted goals and hopes and that of my family and many closed ones. I went through a time when I was having suicidal thoughts and going through phases of feeling jaded, hopeless, and useless. Right or wrong, these thoughts felt valid at the time.

Additionally, going out with the LVAD, a new MedTech therapy, is new to the society. More, being a heart failure patient and living with the LVAD introduces one to experience the life of the disabled fully. Sadly, being disabled often make the patient feel like a burden or an inconvenience. It was difficult for me to navigate this feeling while going through personal work to accept and receive help.

I blogged about my mental health care and tools like meditation. Here are some samples: a short routine I practice most mornings or the power of meditation.

COVID-19 Pandemic considerations

How to maintain health during a pandemic when living with a heart pump Navigating the day-to-day.

Being a husband, father of 3 boys who are 6 (almost) and under, and a heart failure patient who is on the transplant list, it is crucial for me to abide by the recommended precautions, hygiene, and general health measures to avoid any infections or worsening of my state. Added to those is to make sure I keep safe from the SARS-CoV-2 coronavirus (COVID-19). For me, all this means minimizing the number of times I leave the house. It requires quite a bit of planning and discipline.

  • Food and liquid intake – I continue to watch my calorie intake and make sure that I eat a diet that is rich in fruit and vegetables, avoiding salt, sugar, or processed foods. I also watch the amount of water and liquid I drink daily (my recommended daily range is 1.6 to 2.4 liters).
  • Emergency Readiness – I must prepare for emergency scenarios, watching my symptoms, and making plans for logistics relating to COVID-19 restrictions.
  • The same level of readiness applies to matters at home with the kids and the family. It is impossible to plan for everything but planning and design help immensely to brave any storm.
  • Maintaining good habits, hygiene, medication, and exercise.

On Caregivers and Spouses

The patient’s partner often plays a crucial caregiver role. This is invaluable support. I am so grateful to my loving wife, Desirée, for being so helpful and caring throughout this journey.

  • The caregivers go through their rollercoaster of fears and hopes as they face the prospect of the life of their loved one changing in such a big way,
  • They can be the “unsung s/heros” of the journey, and they can experience lots of fatigue, burn-out, or even depression. So, it is important for them to get rest and to optimize their self-care.
  • Caregivers are often expected to be loving, kind, and supportive. But caregivers are also human. They have the right to be in a bad mood, feel poorly, or get sick themselves.

Closing Statement

Living with an LVAD is demanding and has many facets. This post doesn’t explain every aspect of living with the LVAD pump in detail. It intends to give an overview of all major life areas and considerations involved in the process. I hope that it has been bit helpful. Please feel free to share any feedback or questions you may have in the comments below.

Remember: we will be updating this post regularly as more information and experience comes.

Thank you for reading and sharing your thoughts and suggestions.

And

May you be well,
May you be peaceful,
May you be safe,
May you be healthy, and
May you be happy.

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4 thoughts on “Everything I know about life with an LVAD”

  1. Hey Somaneh 🙂

    Reading your blog was very informative and thought provoking!!
    I always figured that your journey is an intense experience, but reading your blog has provided me with much clearer and in depth insights. Thank you for sharing!
    You are an amazing patient, father, son (in law), and a true inspiration, to those you encounter.
    I pray that your positive approach continues to be a blessing for all who are accompanying you on this journey; medical team, admin team, your mom and dad and extended family that are spread literally, around the world. I pray that you know that you are not ever ‘alone’ on this journey

    Blessings, Love and Peace
    Meme

    Reply
  2. I just read your blog! My husband has a heart mate 3 inserted March 2019 at VCU Health in Richmond Virginia. He suffered a right brain stroke during g placement. He did not receive clot buster as it was not discovered until neuro check post surgery. He was atVCU from March until May. He was a fighter for sure as as of today he had regained all physical abilities. God is good! He is 50 years old. He is on disability which was an adjustment for us financially. We are lucky he was on my insurance. It is a journey of ups and downs. God Bless!!
    Sharon Wheeley

    Reply
  3. Thank you for sharing. Same as Sarah, my husband and I are about to impart on the same journey and yes, also scared crazy – the mind is racing with fear for both of us.

    Reply

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