After only 4 days in-patient, the hospital discharged me on Saturday right after the travel ban lifted in Boston. My amazing sister, Sally, braved the 25 inches of snow to drive my mother and me from the hospital to my apartment in Cambridge. The next evening, we took the first flight to Minneapolis and I'm now happily recovering at my parents' home in Wisconsin. My mom is taking great care of me: force-feeding me liver to combat anemia and taking me for increasingly long walks in the beautiful Wisconsin woods surrounding our house.
I still can't believe how well everything went! My final echocardiogram showed trivial aortic regurgitation and stenosis, and I barely even have a murmur left. I stopped taking the pain medications as soon as I left the hospital, and I'm already walking about 2 miles every day. I won't know about the left lung until my follow-up appointment in March, but I'm feeling optimistic. In the grand tradition of the Roberts' Family, I am definitely prone to pushing myself too far, but I am resting a lot and only gradually increasing my walks. I am also trying to be realistic about the future and recognize that I won't be running long distances for at least a few months. Even so, I feel super lucky and excited about the future of my health!
For anyone interested, here is the link to the valve they put in:
I highly recommend watching the video if you're not squeamish! I got the 23mm Magna Ease Aortic valve, which actually comes from bovine pericardium tissue, not porcine valve tissue. Moo.
Thank you for following me through my operation! I hope to see many of you in the near future as I continue on my journey towards recovery!
It's been a long three days, but I'm already feeling much better! This morning I ate my first solid food (oatmael) and walked around the inpatient floor twice. My nurses also took my drainage tubes out, which means I am well on my way to recovery!
Now that I am feeling better, short visits are ok. (Although be warned- both times people came to visit today I immediaty fell asleep!) I will likely be staying in the hospital until after the impending blizzard. I will also be staying a few days in Cambridge as well before heading to Wisconsin.
Katie is having a remarkable recovery. She had the breathing tube removed in the middle of the night and gave a "thumbs up" as she regained consciousness. By 9 am this morning, she was sitting up and by 10 am, was walking ! Her cardiologist saw her and noted that he could barely hear the heart murmur. Katie is amazed after all these years that she finally has an almost "normal" heart!
Katie was moved out the ICU early this afternoon. She is continuing to recover and last I heard was going to go for a walk around the floor! AMAZING!
It seems the staff is very strict about cell phone usage in her new floor, I am not sure about visitors. I will provide more updates tomorrow... if not Katie herself!
This is Katie's sister, Sally, writing. Katie had asked me to update her journal when she wasn't able and to provide everyone with updates. I will try to do the best I can to provide the most accurate details!
The surgery went well. Katie was very ready to get this journey started was very poised and brave as she went off to surgery.
The valve was replaced. Even this morning, the surgeon went in he wasn't sure if the valve would be replaced or repaired. However, when he got in the valve was calcified to the extent that even if he repaired, it wouldn't last more than a year. Katie now has a Bovine (cow) valve pumping!
The pulmonary vein was also repaired. At this point, the surgeons are not sure if it worked. They "filet"-ed the vein to open it up by going through the atrium. At this point, they are not sure if it will be successful. As Katie said in her earlier posts, she has always had 1 working lung so this would just be a bonus!
Katie is currently in the ICU at Children's Hospital. They are hoping to take her breathing tube out in the next couple hours.
I will continue to update her journal in the next couple days as she wanted me to use this as the "green light" for visitors when she is ready.
I went to wish Katie good luck last night and she had this journal open reading everyones' inspiring messages. Thank you for all your support. I feel so lucky to have such an inspiring sister and thank you for helping her through this time.
With just over a week until my operation, I'm experiencing alternating bouts of "pre-race" excitement and being scared out of my mind! A lot has happened since my last journal entry, including two heart catheterizations, meeting the surgeon, and spending a lot of quality time with my family and my friends.
The purpose of the two heart caths was to get a better look at my aortic valve and measure the pressures differential between the two sides of the valve. First, I went to Brigham and Women's Hospital, where my doctor put a tiny camera into my heart by way of an artery in my neck and had me ride on a stationary bike while they measured the oxygen content in my blood and took pictures of the blood flowing in and out of my heart. Then, I traveled across the bridge to the Children's Hospital, where they did a full heart cath and took pictures of both the right and left sides of my heart. As expected, the pressure gradient across my valve is much higher than it had been in 2006, when I was last catheterized.
The doctors also took a look at my pulmonary vein during the catheterization. A narrowing in my left pulmonary vein prevents blood from flowing through my left lung and into my heart, meaning that I have been living the last 25 years with functionally one lung. Before the cath, my cardiologist and I agreed that we should leave the vein alone and just focus on the valve. Pulmonary Vein Stenosis is almost impossible to correct, and my right lung has served me so well that it seemed like an unnecessary intervention to try and patch it up. After the doc got a good look at it, he changed his mind and thinks some new surgical techniques and changes in my physiology might give us a good chance at opening up blood flow from my left lung. At first I disagreed, but the thought of TWO lungs when I've been having such a good time with just the one is too hard to resist, and I have agreed to a conservative attempt at reconstruction.
As the big day draws closer and closer, I can't help but be amazed at how many wonderful people have made their way into my life. I can never thank them all enough, but here's an attempt at it:
The Boston Bucket Listers- we didn't make it very far, people, we will have to work harder this summer.
My friends around the world- thanks for checking in! Your concern for my well-being means a lot.
The doctors I work for at CHB, especially Lisa and Lenny, for being so supportive.
Dr. O, Dr. E, and everyone in the BACH clinic, thanks for providing me with the highest quality medical team a girl could ask for, and to Dr. B for following me through it all.
And, most importantly, thanks to my family. Thanks for all the hours of worrying, the endless phone calls, and for uprooting your lives to come take care of me. And thanks for never letting me slow down; without having to always keep up with the Roberts family, I never would have made it this far! You guys are letting me off the hook for the Birkie this year, but I'll be back in 2014.
It all started at the Cambridge Okterberfest 5k. Running three miles is usually a piece of cake for me, but on that day in October it became nearly impossible to finish the race. Around 3k I started feeling short of breath; it felt like a tight belt was wrapped around my chest. Finish the race I did, but the very next day I emailed Dr. B, the pediatric cardiologist in Minnesota who has followed me since infancy. He suggested I contact the Boston Adult Congenital Heart center, located at the Boston Children's Hospital, which was easy enough since I happen to be employed at the very same hospital. I scheduled an appointment, and during a lunch break one day in December I popped over to the BACH clinic for a stress test and to meet Dr. O, an adult cardiologist who sees patients like me who have congenital heart defects. Since the race in October, I had developed some new symptoms: fatigue, irregular heartbeats, and occasional dizzy spells. I was still running several miles and walking the two miles to and from work every day, and I was able to perform at 112% of the expected level on the stress test, so Dr. O sent me home with the instructions to return in a few months if the symptoms persisted. Two days later, however, I received a phone call from Dr. O that changed everything.
Per my request, Dr. O had contacted Dr. B and obtained the results from my last stress test, at which time I had performed at 192% expected. Furthermore, my blood pressure readings from the more recent test showed an abnormal response to exertion. Given my history, my symptoms, and the differential between the tests, Dr. O and Dr. B agreed that it was time to think about replacing my aortic valve.
The following week, Dr. O invited me to attend the BACH conference where he presented my case to the other cardiologists at Children's Hospital. Here I got to see the MRI video clip of my heart projected on a 10-foot screen and hear some of the most brilliant pediatric and adult cardiologists in the world discuss what should be done about my heart. Ultimately they decided that valve replacement was the only option, and the sooner the better. They also decided to do a heart catheterization before-hand to see if anything should or could be done for my pulmonary vein stenosis and to get a better idea of what my valve looks like so they could develop a surgery plan.
Now that the initial shock of finding out I need surgery again has worn off, I realize how incredibly lucky I am. First, I overcame incredible medical obstacles in my infancy and enjoyed an active and fearless youth. Second, I just happen to be working at the very hospital that has one of the only adult clinics for patients with congenital heart defects in the country. And third, my valve replacement is coming at a time when I have relatively few obligations; ie kids or school; my employer is not only understanding but frankly psyched about having an employee get treated at CHB; and I am surrounded by loving friends and family who are willing to temporarily uproot their lives to make sure I get through the next few weeks.
The surgery is scheduled for February 5th. In the mean time, I am doing my best to stay healthy and spend time with my friends and family. I am so excited to get a new valve so I can get back to running, skiing, and enjoying life again. Thanks for following my story!
Thank you for reading my journal! My story starts twenty-five years ago, when the doctors at the Fairview Medical Center in Minneapolis, Minnesota discovered that in addition to atrial and ventricular septal defects, I had a rare and serious disease in my heart called pulmonary vein stenosis. A pinched vein leading from my left lung to my heart rendered that lung nearly useless, and there were no interventions at that time that had successfully resolved pulmonary vein stenosis in an infant. A few stitches easily repaired the holes between the left and right sides of my heart, but the experimental restructuring of my pulmonary vein ultimately collapsed to its baseline level within months of the operation. Astonishingly, I survived through infancy with the use of one lung and became an athletic and energetic child. At age eleven, the same doctors at Fairview discovered that although I was doing fine with one lung, my bicuspid aortic valve had become tethered and was not open and closing properly. In addition to extra load from the pulmonary vein stenosis, my heart was working double-time to push blood out to my body! Eleven-year-olds hearts are still growing, so a valve replacement was not an option. Instead, the doctors performed a valvoplasty and told me that one day the valve would have to be replaced. 14 amazing years later, during which I skied 5 Nordic marathons, swam competitively, and traveled the world, I started feeling short of breath...