Highlights from Randy Shepherd's
“Ask Me Anything” (AMA) on Reddit
Highlights from Randy Shepherd's “Ask Me Anything” (AMA) on Reddit’s Ask Me Anything (AMA) is a social networking service where SynCardia Total Artificial Heart patient Randy Shepherd shared his story.
His April 29, 2014 introduction: “Hello Reddit. I have been on a heart transplant waiting list for the last 5 years and have been living without a human heart for the last 10 months. I just completed the 4.2 mile Pat Tillman run on Saturday. AMA!”
Below are some highlighted questions and answers from Randy's AMA. Some questions and answers have been slightly modified for brevity and readability. Note: The original AMA thread contains coarse language and sexual references that are not in this highlight.
Questions about the SynCardia temporary
Total Artificial Heart (TAH-t)
Q: Do you mind describing what it (the SynCardia Heart) feels like?
Randy: The high rate of beats per minute means that it beats a little more than twice per second, and the beats are very tangible. If we were sitting on a couch together you would be able to feel it beating through the couch.
Q: How long could you stay on an artificial heart? Do the doctors have so many months to
find you a transplant before your body begins to reject the artificial heart?
Randy: Since there are no biological markers in the artificial heart there are no issues with rejection. The longest I am aware that someone has lived on one is just over 4 years.
There is not any reason that someone couldn't live an indefinite amount of time with the TAH. It is only approved as a bridge to transplant, but is currently under review as a potential destination therapy for people with certain rejection issues.
So yes, theoretically it could support me for an unspecified amount of time, but I do look forward to getting a transplant and resuming my life as before.
[SynCardia Answer: Pietro Zorzetto was on the SynCardia Total Artificial Heart for 1,374 days before he got his successful donor heart transplant.]
Questions about the Freedom® portable driver
Q: I'm assuming your heart continues working by external battery? How frequently do you have to charge?
Randy: The [Freedom portable] driver has two rechargeable and replaceable batteries. I have a wall charger and a car charger that I can plug in with and that will charge the batteries as it runs the driver.
Q: When swapping batteries, does your heart stop briefly? Or is there a window that it holds a charge for so you can replace them?
Randy: There are two batteries and the driver runs off of them alternately so that a battery switch out goes smoothly. I have 3 sets of batteries. During a driver switch out, from one machine to another, the heart does stop and it is a very unsettling feeling.
Q: Was there ever a time where you were worried you wouldn't reach an outlet or change of batteries in time?
Randy: One of the responsibilities of being discharged from the hospital with this machine is to always have two available sources of power and it is drilled into the patient and caregiver before discharge.
Questions about life with the TAH
Q: How do your kids react to all of this? Do they know what's going on, and how old are they? Thank you for sharing your story, this is amazing.
Randy: My daughters are 16 and 13, my son is 7. They do well under the circumstances, but it is a stressor for them. My wife takes them to a counselor from time to time. We have a great faith in God and have relied on Him through this and we have taught our kids that regardless of what happens in this life we will see one another in the next.
Q: Does the heart have metal? Do you need to stay away from magnets?
Randy: No metal in the heart, so I don’t need to worry about magnets. I did have a pacemaker for about 4 years before I received the TAH and that was sensitive to magnets.
[SynCardia Answer: There is a small amount of titanium in the valves that allow blood to enter and exit each ventricle. The drive lines leading to and from the heart are reinforced with metal windings. The titanium in the valves is non-ferrous metal. Patients on the SynCardia Heart should not be subjected to a MRI scan. For questions ask your physician.]
Q: Does it feel any different than having a real heart?
Randy: Yes. It runs at 135 beats per minute and each beat feels like a small child kicking me in the chest. My wife says I finally know what it’s like to be pregnant and kicked by the baby. I let people put their hand on my chest to feel it and the reaction is always astonishment at the force of it. But after 10 months I have gotten quite used to it.
Q: How do you shower? Can you donate blood? Have you ever had a bad time getting through airport security (if you ever fly)?
Randy: I take sponge baths, but mostly I have learned to bask in my own musk. It is policy in the U.S. that anyone who has had open heart surgery cannot donate blood. I haven't flown, but it is approved for commercial air flight. I believe someone just flew for the first time with one a few months ago from Minnesota to South Carolina…
[SynCardia Answer: The flight was on an air ambulance. So far no one has attempted to take a commercial flight.]
Q: What kinds of tasks are harder with an Artificial Heart? Are you able to work from home or help out with household chores?
Randy: As a contractor my line of work was very physical and I was unable to continue in it. My wife works and supports us financially. I have returned to school, completed my prerequisites for nursing and was scheduled to begin nursing school in January 2013, but was physically unable to attend. My plan after transplant is to finish nursing school and work with transplant patients.
Questions about Randy's participation in the 4.2-mile Pat’s Run
Q: How difficult was it to run that distance without a living heart? Was it easier because you no longer have to use that muscle and it is powered for you?
[SynCardia note: Randy walked the 4.2 miles.]
Randy: It was rough. The TAH can accommodate slightly for an increased need in production, but it is minimal. There was a point in the run where I was certain I was not going to make it. Between mile 2 and 3 there is a long incline and about 3/4 of the way up I thought I was going to throw up and had to stop and lean on a fence post.
Q: When you ran did you have to carry a pack for the machine...or was it still linked to the cart?
Randy: Everywhere I go I carry the external driver in a backpack. Everyone on my team offered to carry it for me at one time or other, but I really felt the need to do it myself.
Q: What's the point of exercise if you don't have a heart to strengthen? The only reason I suffer through running is so I don't have a heart attack at 50.
Randy: If you go stagnant you will die. I choose to live. I understand your point and it is true that I won’t strengthen my cardiovascular system by running, but I also lift weights 3-4 days a week to increase my muscle mass because it improves my overall health and will make recovery after my transplant that much easier.
Q: Why did you think it was safe to run that far? Why not just stay on the safe side and wait it out for a heart?
Randy: The easy thing would always be to wait and not do something. I feel like with this second chance that I have been given a responsibility. I have heard from several people on here who are going through difficult times with some aspect or other of health for themselves or a loved one and have been told that I inspired them or encouraged them to face what they are going through. While I don’t necessarily feel inspirational, I do feel [that] showing people what is possible is important, that life doesn’t end with a bad medical diagnosis. As long as my doctors are OK with me pushing myself, I want to keep doing it.
Questions about donor heart transplants
Q: What is it like being on the waiting list for a new heart?
Randy: The waiting is crazy. Not knowing when the call will come can be very emotionally draining. When I was first placed on the list I could never have imagined that five years later I would still be waiting. But it has taught me to value what is most important in life. I have seen the best side of humanity as many people have reached out to help me and my family.
Q: How come donor organs are hard to get if people die in hospitals all the time?
Answer: Only 1 out of 100 who die are actually able to be organ donors. It's actually pretty rare. That's why it is so very important to make the choice to be a donor. Right now there are 110,000 people on the UNOS waiting list. Every day 18 of those die waiting.
Question about Randy's TAH implant surgery
Q: Were you able to see your original human heart? I don't know, I feel like if it were me, I would have asked the surgeon to put it in a jar for me so I could keep it.
Randy: We kept my two prosthetic heart valves and my wife and I plan to make matching necklaces out of them.