Everything I know about the LVAD pump

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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 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

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 lots of notes throughout my journey, doing many research and conversations with heart 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. The lessons learned from speaking and connecting with other chronically ill patients, including heart patients and LVAD patients. 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 ofdilated cardiomyopathy (DCM) in 2012while in South Africa, discovering that my condition was Left Ventricular non-compaction Cardiomyopathy (LVNC), acute end-stage congestive heart failure and myprognosis 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 had left with my wife and our first-born and wondering how long I would still have to live and all… 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 future prognosis.

Living with an LVAD pump 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 Abbott makes the HeartMate 3 LVAD system. Here is a good video by Abbott staring my wife and me.>

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 convenientInstagram postfrom 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.

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 theHeartMate 3 LVAD. You can learn more about the therapy and how it can help patients with advanced heart failure at thislink.

I had the opportunity to meet Abbott’s good folks on a few occasions, both inBurlington, MA, andPleasanton, 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 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 have charged 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 :-).

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.

The surgery

We are talking open-heart surgery with about two weeks minimum at the hospital. I share the details of my own experience on “my journey.” Two weeks is not so much an average than it is a minimum for the hospital stay, 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 decided to use the HeartMate 3 LVAD, which was the newest LVAD 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.

Recovery from the Surgery

After ten 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.

First, 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.

Living with the LVAD

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 (within recommended limits),
  • 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 also involve going to the hospital a few times a year for x-rays, echo, or right heart catheterization.
  • Also, the Bio-engineering team occasionally checks and calibrates your 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.

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.

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.

Des and Big brother doing my weekly LVAD exit site dressing change (2017).

LVAD-Friendly Clothing

I have a percutaneous cable coming out of my belly… This affects what I can and cannot wear and how I look and dress up. I recently made a video here. In the video, you would see me wearing an LVAD undershirt, which I bought online.

Active Life and Fitness

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

My fitness and energy levels steadily improved, especially I graduated. I went from feeling exhausted, not being allowed to lift more than 30lbs (mind you, my son was 40lbs at the time), to now where I can keep with the twins and even lifting them at times.

My advice would be to remain active, physically, mentally, and spiritually. During the 10-12 weeks after the surgery, the medical team would advise a few sternal precautions to follow. For example, not lifting while the sternum is still healing. With time as the body heals. I have been focusing on building up my stamina; endurance ← thankfully, this came back quickly after surgery.

The Daily Shower

Read the original post here. Since I am no longer waterproof, living with an LVAD means learning a whole new showering way. Side note, swimming and water sports are now not an option either.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, or regularly changing the dressing area where the cable comes out of your tummy).

What I get the most questions about are how I shower with my HeartMate3 LVAD system. The electronic components of the LVAD pump may stop working if submerged in water. So, bathing is not allowed. However, one can take a shower after some preparation.

In general, a person’s breastbone should be healed within four to six weeks following open-heart surgery, and sternal precautions should be followed at that time. I could shower about a month after my procedure. It started as a very tedious and tiring process lasting two hours or so. Then, with time, I gained enough energy that I went from taking a shower every 3 to 4 days to every other day, and now, I have enough energy to shower daily.

Showers are doable. It is just a little bit of extra work. I cannot just jump right in. So, before taking showers, I must ensure I protect the LVAD driveline. But I have adapted rapidly to the new norm, and I have accepted it all. I can be taped up and my equipment in my shower bag within about 5 to 10 minutes.

Also, I do not take a direct shower in the usual sense. I use a handheld device, which helps because I am less likely to wet the dressing or any cable part. But I look forward to taking a shower whenever I want, using the correct procedures. And we also try to plan the dressing changes right after when I do shower.

In the beginning, I have had a few incidents where my water leaked into self-adhesive film protection. But fortunately, my dressing remained clean as I caught it early enough. I also tried a few systems until I began using two 8×12′ self-adhesive films, which I overlap horizontally in the middle of 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.

Diet and Nutrition

Watching and lowering Salt/Sodium intake is very important. As part of my LVAD therapy, I need to take blood-thinning medications (or anticoagulants). This is to reduce the risk of thrombosis (blood clotting). And, when it comes to nutritional precautions, 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 primary precaution is being consistent – I must eat about the same amount of Vitamin K foods on different days. Lastly, I actively work with my nutritionist/dietician and medical teams to adjust and adapt my dietary plan over time.

COVID-19 Pandemic considerations – How to maintain health during a pandemic when living with a heart pump. Covid-19 logs – 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 intakeI 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. If I would experience any of the COVID-19 symptoms or another urgent health problem. I also need to have plans in place for what will happen if Governor Baker (Massachusetts) orders shelter-at-home to be extended for a very long time or proceeds with reopening the State.
  • The same level of readiness applies to matters at home with the kids and us. It is impossible to plan for everything that could happen but planning and design help immensely in preparation and confidence, allowing us to respond instead of reacting and operate with higher confidence levels to brave any storm that may come ahead.
  • Coordinating regular hygiene, medication, and exercise practices (see other sections of this article).

The Medications

I have quite a few medicationst 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, same time, same place, every Monday

PT/INR Home Honitoring

Because I am on blood thinner medication, I need to 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 can do my test at home and log the results through an app—the Pharmacists, at the Brigham, monitor, and recommended changes in my meds as needed. Unfortunately, I did not get to travel as planned. But I got to keep the home monitoring system with me.

About two years after my LVAD procedure, my VAD Clinic Team started trusting me with doing my PT INR blood testing at home. Doing the test at home saves me weekly trips to the blood lab, along with much time and money. With the Anticoagulation pharmacists, we keep the device calibrated. I communicate my weekly results through an app on my phone. And when my results fall out of range, we make quick adjustments as needed. So far, with the great help of my boy, we are doing good. And we’re making the most of the extra time with our family and friends.

Acelis Connected Health (ex-Alere Home INR Monitoring) provides me with medical supplies such as the weekly dressing kits and adhesive films for showering. Then Alere helped provide the dressing supplies needed for the LVAD and the shower kit.

The Significance of Mental Health

I also found it mentally challenging to adjust to living with the LVAD. Among the challenges I faced was feeling like a lesser member of society and contemplating the realities of disabled people. It was difficult for me to feel like a burden to others, and I went through much personal work around learning to accept and receive help.

My biggest challenge throughout all of this was dealing with my mind and adjusting to these changes. Having heart failure and an LVAD was not something that I actively wanted (I do not think it is generally something anyone actively wants!), and it did take me quite a bit of time and work to accept my new normal.

There is also the day to day and adapting goals and hopes to the new reality. Also, dealing with society, in general, is a crucial point to mention. I had many reflections around no one else slowing down for the ‘disabled’ and feeling like something of a burden or an inconvenience to society. These were complicated feelings for me to process.

I always considered myself a sensitive positive person, now even more so. There are a lot of challenges to overcome. And you still have your goals, and you need to find something to live for and not lose hope! As men, I think that loneliness maybe even more of a problem for us. I indeed went through a time when I was having suicidal thoughts and going through phases of feeling jaded, hopeless, and useless…sometimes these thoughts felt valid, and sometimes I realized that my mind was playing tricks with me…

Mortality is real for all of us but living with a severe health condition brings us a fraction closer to death and our mortality, which naturally raises questions about life, legacies, and what we live for. Sometimes you get tired… I do my best with all the things I can control. This is one of THE MOST IMPORTANT aspects of managing this LVAD journey – your attitude and mental mindset.

I must make sure that I keep my body, mind, and spirit active while continuing to practice (self-)discipline and boundaries. I try to do my best with all the things I can control. And I rrcaeemind myslf the serenity prayer? – “To accept the things, I cannot change; Courage to change the things I can; And wisdom to know the difference.”

There is a reason we are calling upon wisdom to ‘know the difference’ – it is not always easy to see it and to fully let go of controlling the things we cannot change. I often blog about mental health and meditation. Here are some samples: Check out this short routine I practice most mornings – morning meditation post or thisone.

About Caregivers and Spouses

Often, although not always, the patient’s spouse will play a crucial caregiver role. This is invaluable help and support that carries the patient through! I am so grateful to my loving wife, Desirée, for being so helpful and caring throughout this whole heart health journey.

A few things to think about:

  • The caregiver also goes 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 (such as with a new LVAD pump),
  • Caregiving can sometimes be the “unsung s/hero” of the journey, and caregivers can experience fatigue and burn out. It is important for them to get rest and to manage their self-care too!
  • Being in a caregiver role pushes some people to feel like they always must be loving, kind, and supportive. The truth is that caregivers also have the right to be in a bad mood, feel poorly, or get sick themselves.

It is important to remember our shared humanity, regardless of the role we are in my experience. It is important!

Closing Statement

Many factors are part of living with an LVAD heartmate3 pump. This post is not meant to explain every aspect of living with the LVAD pump in minute detail. Still, it is intended to give a general overview of all major life areas and considerations involved in the process. I hope this has helped!! Please feel free to leave a comment if you have any feedback or additional questions.

Remembers: We will be updating this post regularly as more information and experience comes.

Thank you for you reading and sharing you 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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