Tag Archives: couple

Mending A Broken Heart: Love And Transplantation

Rick Brittell was diagnosed with congestive heart failure in 2011. In April 2014, Rick and his wife, Susie, moved from their home in Boise, Idaho to a trailer in Salt Lake City, Utah for 2 ½ months so that Rick could receive a left ventricular assist device (LVAD) as a bridge to a heart transplant—his only option for a healthy life. Rick and Susie returned home to Boise but left their home once again in April 2015 to move into a Salt Lake City apartment. Rick received his transplant in September 2015. Rick and Susie will finally be able to return home in March 2016 after a full year spent away from home. They have been fundraising with HelpHOPELive since January 2015.

Rick and Susie Brittell HelpHOPELive

Rick and Susie Brittell.


Why did you make the decision to wait before getting Rick listed for a transplant?


Rick: I could have been listed for transplant right after I received the LVAD but I chose to wait until April 2015 when my Medicare took effect. Had I proceeded right away with being listed, the procedure would have been covered but not the post-transplant medications, leaving me to cover $7,000 to $14,000 out-of-pocket each month. Once Medicare took effect, the surgery and the medications were both covered and the post-transplant monthly medication costs dropped to $400 to $600 per month.

Once listed, multiple factors influence how long a candidate waits for a transplant, including the candidate’s health and the number of organs available in a particular region. According to the United Network for Organ Sharing, “you may receive an organ that day, or you may wait many years.”

LVAD heart transplant

Rick lived with an LVAD until his transplant.


How did you feel when you found out you would have to relocate?


Rick: It was a shocker. When we skyped with our 3-year-old grandson, he would ask, ‘Why did you leave me?’ I couldn’t even talk to him because it tore me up. We were suddenly cut off from our family and friends and we had to make a whole new life for ourselves.

Transplant candidates must be able to leave home and come to a specific medical facility as soon as they receive word from their medical team that an organ is available. That’s why some candidates are asked to relocate close to that medical facility while they wait for “the call.”


How has the waiting process affected you emotionally?


Rick: I couldn’t drive for 2 years after I got the LVAD. I became completely dependent on my wife to take me everywhere for everything from a medical appointment to a simple trip to the store. After 40 years of employment, I had to stop working cold turkey. I had to deal with feelings of guilt and worthlessness associated with that. My freedoms were being taken away.

Susie: It was a sobering experience to discover who our true friends were and how our family would support us. We had to learn to do it on our own and figure out how to make it work with little support.

Rick: It’s stressful, but we have chosen not to hold onto animosity. But now when I tell someone, ‘I’ll be there for you,’ I take it very seriously.

The average wait time to receive a heart transplant is six months to one year. A transplant candidate can be removed from the waiting list if his or her health significantly improves or deteriorates.

 

Pie Night HelpHOPELive fundraiser

Support groups helped Rick and Susie find solace and community.


What advice would you give to another family waiting for a transplant?


Rick: Talk to someone who has gone through it. Learn about the procedure, the medications you’ll be taking and the side effects, and prepare for them. Don’t think that life will be perfect after the transplant. My body was torn up for weeks as I adjusted to the medication, and I pushed people away from me and felt mentally foggy. When you get that call, you will go from sky-high feeling lucky to get a heart to rock-bottom feeling guilty, sad or angry that someone had to pass away for you to get the transplant. You will swing back and forth, but you WILL level out again.

Rick Brittell heart transplant

Rick after his lifesaving transplant.

Susie: Do not think that you can shoulder the burden alone. As a caregiver, be patient and know that the person you love might get belligerent, angry or moody, but that is not the same person you love. The person you love will be back after a while. Find someone to unload onto so you don’t take out your frustrations on your loved one.

72 percent of American adults experience financial stress at least some of the time, and 26 percent experience financial stress most or all of the time. Start fundraising for a transplant as soon as possible to reduce the amount of financial stress you’ll have to deal with as you prepare for transplant.


What is life like after transplant?


Susie: I’m just so glad the waiting part is over. We are different people from when we first left for Salt Lake City. It has made us less self-absorbed and has opened our eyes to how narrow-minded you can become.

Rick: Hot dog, I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. Before the LVAD, I could walk about 50 feet per day on oxygen before I was exhausted. Now I can walk 2 to 3 miles. I have realized that I can do this, and I see the light at the end of the tunnel. The journey is not over but there’s a lot more hope than there used to be.


Rick and Susie continue to fundraise with HelpHOPELive for post-transplant expenses including relocation, medical appointment co-pays and a lifetime of immunosuppressants.

 

Learning To Adapt: How A Business Owner Supports His Wife After Injury

In honor of National Family Caregivers Month this November, we’re profiling individuals who play a key role in the care and happiness of their loved ones. In July of 2014, Kirby G. Smith was thrust into one of the most intense experiences of his life. Suria Nordin, then his fiancée, became paralyzed while vacationing with Kirby in Jamaica. By July of 2015, Kirby had founded SunKirb Ideas, a game-changing “smart home” installation and management company.

Kirby hopes to offer ease, efficiency and manageable overhead costs to families coping with a disability or injury. We picked Kirby’s brain to find out how smart home tech could revolutionize daily life for American families.

Kirby Smith and Suria Nordin HelpHOPELive injury spinal cord injury wheelchair SunKirb Ideas

Suria and Kirby in their neighborhood. Source: Wall Street Journal


After your wife’s injury, what modifications were needed to create a supportive home environment?


We had to modify multiple elements of our house, including our home entrances, the heights of our light switches, the bathroom configuration, our flooring and our emergency response options.


How did you begin to discover the benefits of smart home tech?


When Suria was injured, I wasn’t very motivated to seek out adaptive equipment because of the exorbitant prices for purchase and installation. As a result, I started to take a closer look at regular consumer products. It turned out that MANY of these products were already outfitted with adaptive technologies, but those features were not well-advertised.

Kirby Smith Suria Nordin HelpHOPELive home

Kirby found creative ways to make life easier for Suria. Source: Wall Street Journal

When it comes to adapting for disabilities, people tend to just purchase the tech without looking into the value. I realized that instead of asking families to look for expensive adaptive equipment, I could help them to adapt existing equipment for their needs. I realized this was really a gap in the market: services from a company that understands disability and aging directly.


What kind of cost-effective conversions did you discover?


The first four months after Suria was injured were challenging. We had no one to turn to to discuss life after injury when it came down to the nuts and bolts of home modification. In one instance, I searched for a piece of technology that would allow Suria to turn on the television with her voice. A vendor presented me a customized voice-activated device that would cost us $6,000. To me, that price was outrageous. Instead of making that purchase, I picked up a $400 Xbox console, which has built-in audio recognition that can completely control a television set, including sites such as Netflix and cable box or TiVo DVRs.

xbox

An Xbox can be used in place of a $6,000 modification.

The second piece of the puzzle was making physical adaptations without relying on installation services. Every adaptive tech business sold its product aggressively, but no one showed you how to adapt your home without paying a professional to do so. Different vendors handled each piece of the home, from the lights to the doors to the television, with huge service markups attached to each. The vendors pushed their own product and didn’t work on continuity. We would have had to find our own tech-savvy contractor to adapt the house on a physical level. Learning how to do that on my own gave me the experience I needed to help others do the same without paying exorbitant installation fees.


Why don’t businesses advertise adaptive uses for consumer products?


The average person doesn’t even think about these considerations. In Xbox’s case, the company wants to appeal to gamers primarily. Businesses don’t want to lose their core markets, so they tend to shy away from using language like ‘adaptable’ or ‘adaptive’ because they are so afraid of alienating their core consumers.

game marketing Battlefield

Afraid of alienating core consumers, most companies don’t advertise accessibility.


How did your professional background inform your business?


My tech background as a Senior VP of IT helped me to identify what was a good deal and what was an outrageous proposition. We had to design portions of our systems to accommodate persons with disabilities. I’ve been aware of that [need] throughout my career.


How can intelligent tech impact the lives of families coping with an injury?


Smart tech can provide cost savings while improving safety and comfort. A smart house can monitor energy usage and save you money while you’re away from home – for example, the system will adjust the temperature to save energy if it senses that you are away from your home and then, as it learns your schedule, it will bring the temperature back to comfort levels before you arrive. Our home tech learns Suria’s patterns and adapts to them. We have smart smoke detectors that pick up smoke and CO2, but the alarms can identify both the exact location of the issue AND the degree of emergency. If someone burns the toast and there is smoke in the kitchen, the device will inform us of the issue but will also note that it doesn’t pose an immediate threat to our safety. The sensors also detect motion and can alert us if we are away and there is movement in the house. They can also tell the thermostat we’re out, and lower energy levels to save power.

smart home

Smart tech can save users money and improve safety.


Can smart homes help caregivers, too?


As a caregiver, I use our home features as much as Suria does! Technology streamlines and simplifies everything. Caregivers can monitor their homes and their loved ones and keep in constant contact, especially in case of emergencies. When everything is connected, it becomes easier for EVERY member of the family to live a fulfilling life.


Are there benefits to using smart tech beyond physical disability support?


It’s nice to have equipment that assists you but isn’t stigmatizing. There is a ‘cool’ factor to a lot of this technology that supersedes the disabled label – in fact, my first SunKirb Ideas clients are not disabled. That’s what’s so powerful about connected home technology: it transcends traditional labels and limitations. I truly think we’re on the cusp of very affordable technology that can change lives, and I’m proud to be on the forefront of that.

smart house family

Smart tech can transcend the ‘disability’ label to appeal to everyone.


Why not expand your business to the general market?


After what I went through with Suria, serving families who are coping with disabilities is my passion and where my heart lies. I’m not speaking from theory when I address consumers – I’ve lived it, and that gives me a perspective I can share with others. By testing things with Suria, I was able to determine what would work for others with similar situations or even completely different concerns (blindness, for instance). I’m not in this to form a gigantic company – I am looking for fulfillment and the ability to provide a good service. I want to be able to walk away feeling like the money I made is supporting a worthy cause.


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