Due to a broken Medtronic lead, which fractured on July 4th of 2013, Kristy decided to have the lead replacement surgery at UCSF with Dr. Lee. He designed a new plan, which included using a Boston Scientific lead for her atrial flutter pacing and therapy. It's a bit thinner and possibly therefore more flexible. Over time, we are hoping that Kristy can go more than a few years without another heart surgery.
October, 2013
This is the story of Kristy's medical journey, updated as often as major events occur in her life. We know that Kristy has found comfort in learning from other people's stories, and we hope that her story is also helpful to others in similar or the same situations. We are blessed and are thankful every day.
--Kristy's Family
KRISTY'S UPDATES
Past Blog Posts
January, 2013
NOTE FROM FAMILY:
Save Kristy
STAYING STRONG,
with your support, thoughts, and prayers!
After years of trying to produce a fertile egg so a surrogate could carry her baby, Kristy was told that the medicines she was taking to keep her heart flutter under control were causing her eggs to not mature, and were therefore infertile. Because she was told that her heart would not necessarily react well to the additional blood volume that being pregnant would create, she and her husband Lauren avoided trying to get pregnant. However, health insurance did not cover the replacement of her IUD after two years of fertility sessions, so she made the decision to go without, especially since her eggs were tested infertile for 2 years. Surprisingly, she found out she was pregnant in May, 2012, and she and her husband decided to take the risk, under close medical supervision by UCSF, to attempt to carry to term her own child.
Kristy's Story of surviving TGA
Pacemaker Complications
Subtitle
July, 2003 Kristy's smile is still wide, and as events unfold we continue to keep our spirits up. Over the last 9 months she has been in and out of the emergency room a few times when she was feeling very weak because her heart had remained in a flutter rhythm for over 5 hours. But for the most part her pacemaker has been keeping her heartbeat at a minimum of 80 beats per minute, and giving her therapy if it slips back into a flutter-beat. This has happened less and less frequently, averaging about 70 times per week immediately after the surgery to about 4 times per week currently, which is good news! In fact, until recently Kristy was feeling well enough, although living a less active and somewhat restricted life than she was previously. But in June, she began to feel out-of-breath and shaky again, and returned to a steady routine of testing. The results revealed that her pacemaker's electrical pulses were only captured by her heart some of the time, due to the low voltage of the pacemaker and the Amiodorone medicine she is taking to stop the random electric impulses created by her own damaged heart. In most patients they turn the voltage up, but in Kristy's case, increasing the voltage makes her diaphragm 'beat' along with her heart, so Kristy's doctors decided that it would be best to reposition the original lea in her heart. The surgery was scheduled for July 14th, 2003 and was performed by Dr. George VanHare at Stanford Medical Center. Kristy was advised immediately before she went into surgery that it would be less stressful on her body and heart if she was given a local anesthetic and allowed to be conscious enough to breathe on her own. She agreed, then listened (but couldn't watch) as the doctors opened her up and directed her to "lean right" and "lean left" while they checked and changed the pacemaker lead locations in her heart chambers. She was wheeled out into the hallway four and a half hours later, and was followed by an entourage of relieved friends and family to the ICCU (Intensive Coronary Care Unit). She will be recovering for the next 6-8 weeks by resting and letting the new pacemaker lead become settled and more stable. Please keep her in your thoughts and prayers.
Heart Failure
October, 2002 On September 31st, 2002, Kristy flew home by herself on a fourteen-hour flight, nine days before her vacation was scheduled to end. She spent her first night at home exactly as she had spent the previous ten, sitting on the floor next to her bed because she was unable to breathe while lying down. The next morning hermother took her to what everyone expected to be a routine doctor’s appointment to check for pneumonia. What they found instead caused Kristy to be sent immediately to the emergency room at UCSF hospital! The doctors told the twenty-two year old that her heart was beating at over 350 beats per minute, and since it had been so for so long she was experiencing heart failure. Her heart was functioning very poorly, unable to push blood plasma throughout her body, and the fluid was slowly filling her body and her lungs. Kristy spent sixteen days in the hospital, in and out of the ICU under constant care and observation. She lost fifteen pounds of fluid inthree days and went through three cardio versions (an electric shock that interrupts the heart muscle rhythms).
Four days after she was admitted into the hospital she had a cardiac arrest (her heart stopped beating). She collapsed and hit the floor face first, causing whiplash before the nurses had time to call a 'code blue'. The doctors were able to revive her but three days later she underwent surgery for the implantation of a combination defibrillator/pacemaker. Kristy is home now recovering, with a file full of drug prescriptions and repeated episodes of fast heartbeats, which they have diagnosed as Atrial Flutter. She will not be able to resume her normal lifestyle until her heart heals enough to beat regularly or an expensive 'Ablation' surgery is performed to eradicate the electrical pulses causing the flutter rhythm. For now she has regular doctor appointments to have her pacemaker read, which tells the doctors how often she is having flutter episodes on a daily basis. The specialists continue to check the progress of the heart muscle that was enlarged and weakened during her heart failure. Her progress is painstakingly slow for now, but she's keeping her spirits up and her smile wide.
Ablation Surgery
December, 2005
After Kristy recovered from her pacemaker lead surgery, she rested at home in Santa Rosa with her family for several months and then decided to relocate to San Diego. She kept her doctors at Stanford and UCSF, while she created new relationships with the doctors at UCSD. The routine echocardiograms seem to show that Kristy's heart is not making any improvements leaving the heart muscles (ventricles) weak and enlarged, resulting in poor function. Her medicine dosages have been increasing rather then decreasing as hoped. In an effort to remove Amiodorone from her list of daily medications, since it has many severe side effects that damage internal organs such as the liver and lungs, Kristy decided to have a flutter ablation surgery.
Rather than suppress the flutters with medicine (Amiodorone), she wanted to physically eliminate the origins of the flutters by ablating them. This type of surgery is of high risk for Kristy because her heart anatomy is backwards from yours and mine(due to her Transposition of the Great Vessels), making it unfamiliar territory for the operating doctor. The ablation surgery consists of the surgeons attempting to ablate, by burning, the tissues in her heart that is duplicating the function of the Sinus and AV nodes. These sites are creating electrical impulses that are telling her heart to beat, therefore speeding her heart rate up from 80 to 188. This then causes her pacemaker to speed up her heart even more in order to break the fast rhythmic circuit. The surgery was scheduled for December 21st, 2004, performed by Dr. George VanHare at UCSF, and it went better than expected. The flutter paths were destroyed and although they warned that the heart may develop new paths and a second or third ablation may be necessary, they took Kristy off the Amiodorone that same day!
Kristy's heart remained in relative normal rhythm, with a few flutter instances, until April 15th, 2005 when her heart went into a flutter and would not come out. She was rushed to the emergency room in San Diego and her heart was recorded at an outstanding 240 beats per minute. The emergency room staff tried numerous ways to get her heart out of the very dangerous rhythm. They even tried paralyzing her heart, but her heart continued to go back into a rate of 200 beats per minute. Then finally the ER doctors attempted liquid Amiodorone at Kristy's request and her heart finally started slowing down over the next few hours. She stayed in the hospital for 4 nights while they watched over her to make sure it would not happen again. Kristy has been treading lightly since this occurrence and has eliminated all physically active pastimes. She is living a very immobile life at this time. Because her heart slid back into the abnormal, flutter rhythm, Kristy will have to decide if she is willing to undergo another ablation surgery. In the meantime, her doctors have found that her Medtronic pacemaker battery is almost at the end of it's life. Usually a 5-7 year replacement schedule, after only 3 years Kristy will be scheduling a replacement of her pacemaker. Most likely in June of 2006 Kristy will be forced to have another pacemaker implanted. Please keep Kristy in your hearts and prayers and we are all hoping that new technology will offer opportunities for a more normal lifestyle.