To tell you my story, I have to give you a little background knowledge. I have Congestive Heart Failure (CHF). This is my 5th year having this diagnosis. To assist my failing heart, I have what is called a Left Ventricular Assistance Device (LVAD). I was recently fortunate to have an Automatic Implantable Cardioverter-Defibrillator (AICD) implanted to address my episodic runs of Ventricular Fibrillation (VFib), a dangerous cardiac arrhythmia.
One of the most crucial aspects of taking care of myself is maintaining an extensive prescription regimen. I take around 15 pills each day to satisfy what my body needs to function as well as medically possible. To avoid listing everything on my medication list, I will simplify by saying that I take beta blockers, a couple of anti-arrhythmic medications, blood thinners, vitamins that support cardiac function, a diuretic, an anti-anxiety medication, a supressive antibiotic, and a couple of different allergy medications. As luck would have it, my pharmacist did a lot of his studies while interning with a heart failure center, so he is very familiar with my symptoms, medications, and the like. I have a great sense of peace knowing that the guy responsible for dispensing my meds is not in the dark when it comes to my condition! I take most of these medications twice per day. Each time, it takes around 10 minutes to lay out my pills and get them swallowed. When I can help it, I try to have something to eat before taking my meds because otherwise, it kills my stomach.
I have had my LVAD since April 30, 2018. Lord, what a trying summer that was. I may write another post that goes into that a little more, but for now, know that most of it sucked. The most critical component of being an LVAD patient is staying on top of your driveline dressing routine. The driveline is the line of wires that connects the batteries and controller to the pump inside your body. The driveline enters through a spot on your stomach and travels through your trunk to the pump that rests in your heart and chest cavity. This "hole" (for a lack of a better term) stays open, so for the duration of your LVAD's stay in your body, you have an open portal between your insides and the world.
Some people never have issues with their driveline site. However, I am not "some people". In January of 2019, I developed an MRSA infection in my driveline and was in the beginning stages of sepsis. I was in and out of the hospital for most of the winter and spring trying to get on top of the stubborn infection. This required IV antibiotics during my hospital stays and additional IV antibiotics administered through a PICC line in my arm a couple of different times. I was prescribed oral antibiotics as well. Eventually, the infection was considered "controlled", but it will always lay dormant in my body waiting for the perfect storm of circumstances to run rampant again.
To curb this, my team performed a surgery called an Irrigation and Debridement procedure (I&D surgery). This is where the affected and necrotic tissue caused by the infection is removed from the body and the entire driveline is cleaned out to lessen the bacteria's opportunities to get the upper hand. The day after this procedure was done, I was shocked to find that my surgeon had to remove a chunk of my stomach roughly the size of a squatty, fat dill pickle. The wound was easily 1.5 inches deep. My wound care consists of twice daily dressing changes. I am sent a giant box of supplies monthly to provide what I need to clean and pack the wound. This process usually takes around 15 minutes.
Showering and other day-to-day tasks with the LVAD are a little different. To get a shower, my LVAD has to be placed in a waterproof shower bag that I wear cross-body. I have to use cling wrap and silk tape to cover my wound site to mitigate dirty water soaking my dressing. Immediately after showering, I have to change my driveline dressing. At the moment, I am also covering my left shoulder with the same cling wrap/silk tape get up because that is where they recently placed my AICD, so it is still considered a vulnerable spot that has to stay dressed and dry. Showering usually takes me around an hour from start to finish.
The LVAD itself uses two batteries. Together, the batteries last about 10 hours. Before I go anywhere outside of the house, I have to know where my battery life is and take extra batteries and a spare controller with me. Overnight trips require me packing up my batteries and charging station. I use a large backpack for this. I also have an AC cord to use at night so I don't potentially "sleep through" low battery alarms.
The other integral aspect of taking care of myself is maintaining my appointments. I have an LVAD team that I see pretty much monthly. I also have to see my surgeon's office routinely and now, with the AICD, I see an electrophysiologist. Additionally, I have a home health nurse that sees me weekly to draw labs and ensure that things are going okay. I recently learned that my insurance company wants to send another home health-type nurse to "support" me (probably more or less to see if I'm really needing the stuff they're being billed for-LOL). Lastly, I also see a sleep disorder doctor as it was discovered that I have a mild sleep apnea, so I will soon be adding "CPAP" to my list of medical equipment and appointments.
I wish I could come up with a more graceful closing to this post, but frankly, I've had enough of myself after delineating all of that. In the posts to come, I hope to discuss more about my insights into other components of my heart journey and overall human experience. I'm oscar-unicorn-tango.
Sincerely,
Samantha
To curb this, my team performed a surgery called an Irrigation and Debridement procedure (I&D surgery). This is where the affected and necrotic tissue caused by the infection is removed from the body and the entire driveline is cleaned out to lessen the bacteria's opportunities to get the upper hand. The day after this procedure was done, I was shocked to find that my surgeon had to remove a chunk of my stomach roughly the size of a squatty, fat dill pickle. The wound was easily 1.5 inches deep. My wound care consists of twice daily dressing changes. I am sent a giant box of supplies monthly to provide what I need to clean and pack the wound. This process usually takes around 15 minutes.
Showering and other day-to-day tasks with the LVAD are a little different. To get a shower, my LVAD has to be placed in a waterproof shower bag that I wear cross-body. I have to use cling wrap and silk tape to cover my wound site to mitigate dirty water soaking my dressing. Immediately after showering, I have to change my driveline dressing. At the moment, I am also covering my left shoulder with the same cling wrap/silk tape get up because that is where they recently placed my AICD, so it is still considered a vulnerable spot that has to stay dressed and dry. Showering usually takes me around an hour from start to finish.
The LVAD itself uses two batteries. Together, the batteries last about 10 hours. Before I go anywhere outside of the house, I have to know where my battery life is and take extra batteries and a spare controller with me. Overnight trips require me packing up my batteries and charging station. I use a large backpack for this. I also have an AC cord to use at night so I don't potentially "sleep through" low battery alarms.
The other integral aspect of taking care of myself is maintaining my appointments. I have an LVAD team that I see pretty much monthly. I also have to see my surgeon's office routinely and now, with the AICD, I see an electrophysiologist. Additionally, I have a home health nurse that sees me weekly to draw labs and ensure that things are going okay. I recently learned that my insurance company wants to send another home health-type nurse to "support" me (probably more or less to see if I'm really needing the stuff they're being billed for-LOL). Lastly, I also see a sleep disorder doctor as it was discovered that I have a mild sleep apnea, so I will soon be adding "CPAP" to my list of medical equipment and appointments.
I wish I could come up with a more graceful closing to this post, but frankly, I've had enough of myself after delineating all of that. In the posts to come, I hope to discuss more about my insights into other components of my heart journey and overall human experience. I'm oscar-unicorn-tango.
Sincerely,
Samantha
