Hearts for Hearts’ Sake News

A Northern California Network for Families with
Congenital or Acquired Heart Disease

Contents

Tricia’s Notes
Got a Match
Just the Facts
Help Wanted
Introducing!
Brave Hearts
Featured Physician-- Dr. David Teitel
Announcements
Contact Us
Disclaimer
Acknowledgments

Tricia’s Notes

I got to meet so many interesting families that day and was especially moved by those families who had lost children but still attended the reunion. They were a poignant symbol of how deeply congenital heart defects affect not only the life of the child but the existence of the family. No part of the family remains immune to the changes that having a child with health problems brings.

These families are a further reminder that there is much left to be done in the study of CHDs and development of better treatments for them. And these types of studies need to be funded. Sadly, the public awareness that would demand funding is clearly not there yet. And it is really up to us as families to put ourselves into the role of educators for our community to promote greater awareness of the MOST COMMON birth defect.

I know it is difficult at times to have room in our lives for this kind of work. But even simply by helping our extended families understand CHDS, we go a long way toward increasing awareness. In this newsletter, I think you will find some convincing arguments for beginning this work, even on a small scale. How can we possibly be thankful enough for the research that allows Kristen Downing to write as she does “Life is fabulous!”? How can we as a community not see that all our children deserve the right to see their 28th birthday and beyond? The stakes are too high for us to keep our children’s medical histories completely private.

All of us can help fight CHDs by letting our communities know about them and by drafting a letter every now and again to our local government representatives to urge for more funding in this area. Even these tiny steps are a way to stem the tide of feeling we are powerless to change the future for our children.

The UCSF Pediatric Council, together with Pediatric Cardiology, are embarking on just this kind of work. Their plan is to raise the funds to endow a chair which would be used to attract the most promising researchers in the field. The Pediatric Cardiology department strives to lead the way in new advances in pediatric cardiology. Ultimately this research will benefit us all. Should you have the resources, this endeavor is certainly worthy of your support. You can find out more about this project by contacting the Pediatric Council at (415) 476- 0465 . Or you can make a check out to the UCSF Foundation. Write in the memo field of the check "Distinguished Fellowship for Pediatric Cardiology" and mail to : Pediatric Council
44 Montgomery St.
San Francisco, CA
94143-0248
Back to Contents

Got a Match?

Also I’ve had numerous requests for parents with older children who have undergone the Fontan. Many of our kids on the Fontan track are quite young and haven’t completed all three stages. Finally, I’ve had requests for matching with families in the Napa area or in Sonoma. In the next couple of months, one of my goals is to provide each family with at least one match, so that we can begin getting to know one another as a community invested in the same goals and concerns.
Back to Contents

Just the Facts

Many organizations such as ours have a tendency to lose their steam after the initial interest is lost. Nonprofit status gives us a standing that says “we’re here for keeps.” It proves how seriously we undertake our mission to assist all families in this area who have children with heart defects. And it opens the door for our organization to grow rapidly and to implement many helpful programs.
Back To Contents

Help Wanted

In response to the changes that are rapidly happening, I have instituted an advisory council which will ultimately become our first Board of Directors. This council will meet 6 times annually in Sonoma County. We currently have one more position available on the council and are seeking for 2 people to fill alternate positions as well. We are asking for a one to two year commitment from our council members. Please contact me directly if you are interested in any of the above positions.
Back to Contents

Introducing

My mom told me so many stories about when I was born and what the doctors had said about my prognosis. In 1968, the future looked grim for children like myself. I wonder how much it has changed for children who are born with TOF and all other forms of CHD. I am certain, from talking to other parents of children with TOF, that their futures look a lot brighter now than mine did.

Even with many technological advances, I wonder how these children fare psychologically and what their future holds for them. At 28, I am still not sure what will happen to me. Is anyone? But I do know that so far, I have had a wonderfully lucky and blessed life. It hasn’t always been easy dealing with my CHD, but it really didn’t become hard until I got older.

I had my first surgery, a BT shunt, when I was 15 months old. Of course, I can’t remember a thing about this particular surgery. At that time, there wasn’t a whole lot the doctors could do for many children with CHDs. So this was our best bet for the time and it worked just fine.

I had the “Big Corrective” surgery (as I like to call it) in 1972. I definitely remember this surgery: some unpleasant memories but for the most part the memories were benign or even good. The bad memories were tucked deeply and safely away from consciousness.

The welcome home party surely was a good memory: all my friends and family, the huge stuffed teddy bear just for me, but mostly the thought and excitement of being able to “run” like the rest of the kids. That is what they promised me would happen when I came home: that I could run! I couldn’t wait.

That promise did come true. The surgery was “successful” and I went about my life for the next 19 years, blissfully ignorant of the seriousness of this disease, believing that I would be fine for the rest of my life. I did have tremendously good health as a child and adolescent. After my “Big” surgery I went wild: climbing trees, racing friends, roller skating, doing aerobics and even jogging. I think I must have driven my mom crazy with how athletic I had become.

I know now that the look of worry on her face when I said I was going skiing in Tahoe at 7,000 feet wasn’t because she was worried about me breaking a leg or twisting a knee. No, she was worried that my heart would suddenly give out, a fear she had carried with her since the day I was born. She never told me any of these fears while I was growing up and I am thankful to her for that. Looking back, I realize that I didn’t consider myself different from other children. I thought of myself as being very special because that is what my mother always said. She treated my surgery like a badge of courage, so that is how I looked at it. It really gave me a sense of accomplishment early in life to know that I had “survived” something as scary as open heart surgery.

When I was asked if I ever needed another surgery, I would usually reply with a nonchalant, detached answer like “Oh, maybe. I don’t know. But if I do, I’ll do fine. I’ve done it before so I could do it again.” I would talk about it in a cool, confident tone never thinking of the reality of what I was saying because I didn’t believe I’d ever need another surgery.

Things changed as I got older; that pride I carried turned into fear. I had been diagnosed with Ventricular tachycardia in 1992, and a couple years later, I was told by several cardiologists that I might have to have my pulmonary valve replaced.

I listened but I didn’t hear what they were saying. It was too hard to hear, to take and to believe. I was so used to living my life as a healthy person, happily unaware of the time bomb inside me, that to fully comprehend what I was being told was too much. I didn’t really start to believe the doctors until the deterioration of my heart took over everything else in my life.

A little over a year ago, I was baby-sitting a favorite little friend of mine. He was only a year old and the skin of his hands were that soft creamy white that only a child can have. I reached down to hold his hand. When I looked at his tiny hand in mine, I was suddenly horrified at the color difference between our hands. Mine was purple, gray and very old looking. How could that be? I was only 27. I dropped his hand very quickly and wondered for just an instant why my hand looked so bad.

What flashed through my mind was not pleasant but still inconceivable. “Blue fingers, blue toes, the doctors will always asking me about that. I still didn’t fully know what it meant other than I must not be getting enough O2. Why? Probably my heart was not working efficiently. Why? How could that be? I am only 27. I am done with my surgeries. I had my two and I was done. I thought they said I didn’t need anymore.”

As Spring came and went in 1996, I noticed that I seemed to be more and more tired. I tried to keep up with my busy schedule but I was failing: canceling appointments, dates, social outings, even work. Every morning when I woke up, the thought of a shower and actually getting ready to go out exhausted me.

When I finally did get ready, I would look in the mirror and think, “So this is what age does. It makes you ugly.” Even though I got enough rest (it was never enough), ate the proper food, and exercised, I just seemed to be getting heavier and uglier. Even my friends and family noticed. I just didn’t look like me. My face and body were puffy and my facial skin color was gray or pale. No amount of makeup could hide it. Again, it was easier to think I was just getting ugly in my old age (27!).

By early summer, I started really taking notice that something could be wrong. I had gone swimming with a friend to help lose the weight I thought I had gained. As I climbed out of the pool, I got a very sharp and crushing pain in my chest, a pain I had never felt before. I was finally coming to realize that something was terribly wrong but I still didn’t want to tell.

My niece was the one who convinced me. I was driving her to her softball game when a wave of pain and dizziness came on. I got really scared! What if I crashed? What about Nicole? Instead of going to the game, I went to my mom’s house. As fortune would have it, she wasn’t there.

I started to panic because I thought I might pass out and didn’t want my 7 year old niece to carry the responsibility of dialing 911. I called my doctor and before a word could spill out of my mouth, I started crying. This was my BIG clue that something was wrong. Whenever I start to cry without warning I KNOW that something is up! The doctor prescribed some pain pills and told me to come see him soon.

When my mom came home, I started crying again. Now she knew that something was wrong. She had known all along, as mothers do, and she had been trying to tell me but I wouldn’t listen, as daughters do.

Since the cat was out of the bag, everyone was really on my case to go see “someone.” I didn’t at first. I really believed that the doctors wouldn’t be able to do anything. Besides, I didn’t WANT to be sick. As time went on, though, the pain got worse and my energy was practically non-existent. I couldn’t eat and I started throwing up. After a really long sleepless Sunday night, I decided to call the doctor.

Sure enough, I was at the hospital by 10 am the next morning. I spent a week there, going through one unpleasant procedure after another. Then I was sent home with no diagnosis. The doctors knew that something was wrong but couldn’t pinpoint it, so I was sent home on O2 and painkillers. From there, I slipped into a life of sleeping most of the time, throwing up when I was awake and eating almost nothing.

By now I KNEW that something was wrong; not only that, I KNEW that I was dying and no one knew what to do for me. It was a very helpless and scary feeling to say the least.

We tried to find help and were told to go to a “bigger” hospital where they might be able to deal with my complicated medical history. So back we went to the same hospital where I had had my second surgery 23 years earlier. In time and through many painful and upsetting experiences, we discovered what was wrong and what was needed to “fix” it.

From an echo we learned that I was in severe right heart failure. Two thirds of the blood pumping into my lungs fell back into my right ventricle. During a pre-surgery catheterization, it was discovered that I had a double pulmonic aneurysm and that my heart was so enlarged it was kinking my left pulmonary artery. I needed to have surgery soon!

I chose August 1 for the surgery date because it is my mom’s birthday. I thought it would be a good omen. There was no way I could die on my mother’s birthday. I had the surgery and was in the hospital for 17 days because of a pain control problem. It was a terrible time for me. I felt out of control, I was in pain, I wasn’t prepared for what I was going through and I wasn’t prepared for what was to come.

After I went home to stay with my parents to recover, I fell into a deep depression. Being an optimistic person, I felt terribly that I felt so terrible. I also felt guilty that I wasn’t jumping for joy that that I had survived another surgery. I was very disappointed in myself, which didn’t help my depression at all. I felt my spirit had been broken and I was worried that I would never recover my lust for life.

I did recover, however. Seven months after the surgery, and two months after I joined a listserve on the internet for adults with congenital heart disease, I started to feel better. There I found what I had been looking for: other people who really understand how I feel because they have been there too.

Since my recovery from my third surgery, I have been active in the formation of a national group for adults with congenital heart defects and I also worked as a camp counselor for “heart” kids at Camp Del Corazon on Catalina Island this past summer. Meeting others with CHD has taught me that I am not alone, that I have support and that life goes on no matter how difficult things may seem. Life is so precious to me now and I too, am so thankful to be here. Life is FABULOUS!!!
Kristen Downing
Back to Contents

Brave Hearts!

Featured Physician

Beyond his fellowship, he expected to return to Canada to practice medicine, but was pleased to receive an offer to remain at UCSF in 1982. Pointing to the stunning view of San Francisco from his office, during our recent interview, Dr. Teitel said, “I looked out the window and it was hard to say no.”

Parents and UCSF both benefit from that persuasive view and Dr. Teitel’s decision some 15 years ago. In addition to his recent work to plan and coordinate the UCSF Pediatric Cardiology Reunion, his personal philosophy on many issues in pediatric cardiology that are so important to parents and physicians alike sets an unimpeachable standard for the way in which doctors and families can work together to best care for the child with heart disease.

Dr. Teitel has always found himself drawn to work with children. As a youth he worked in camps and in college was involved in many projects that benefited children. “Kids are just fun. I love babies and children. I knew if I went into medicine that I would do pediatrics.” Dr. Teitel describes himself as very science and logic-based, hence the appeal of cardiology because of its inherent logic.

Understanding normal function of the heart and blood flow makes understanding heart defects and the problems they cause fairly easy. Another attraction to cardiology for Dr. Teitel is that it involves much hands-on work, particularly with echos and caths. It is a good specialty for people who want to do something with their hands but also want the interaction with patients that surgery often precludes. “It’s really a combination, halfway between physician and surgeon. I work in the catheterization lab and we do a lot of things that cure the children with interventional procedures. But you’re also caring for patients that are awake and alert. So it’s a good meld between the two.”

Having two children of his own, Dr. Teitel also feels a particular empathy for parents with “heart” kids. “In pediatrics, having children is almost essential. You almost feel that you shouldn’t get your board certification until after you’ve had children.” He finds quite a difference between the way he relates to families now as opposed to when he did not have children himself. “I remember being a resident before I had kids and asking parents to give their kids a medication four times a day, waking them up at 2 in the morning. Once you become a parent you realize, first of all, how the emotional involvement is so important a part of the therapy. When you’ve had a child the relationship is like nothing else you’ve ever had in your life. It affects how you treat parents and how you want them to treat their children and what you’re willing to put them through with their children.”

Caring for so many children with heart disease crosses over to Dr. Teitel’s own parenting. “You certainly do appreciate the health of you children more. It helps make you a better parent because you see what other parents go through, how they tolerate things you couldn’t even dream up yourself.”

Being a parent has also helped Dr. Teitel define his role in the care of children with heart disease. “As a doctor, you’re more of a guide to help parents care for their child. That’s what a lot of people don’t appreciate. As a physician, you want to be able to treat and cure people. Especially with heart disease, cure is not really the issue. You want to give the child as healthy and normal a life as you can.”

“You give the parents the possibilities and let them choose and help them along the way. I don’t consider myself as being the treating person for the child but as helping the parents care for the child. We’re with them a few hours a year while the parents are with them all the time. So to pretend that I’m doing the care and managing the child is ridiculous. Basically its for me to give you the tools to be the better caregiver.”

Key to assisting parents in caring for their children is providing parents with all the information they need. “I think it’s unacceptable from an ethical standpoint to not give the parents all the knowledge because it’s not your child; it’s their child. The more you can give them, the more parents will have a say in the decision making. You have to work constantly to make sure the parents understand what the child has as well as any cardiologist.”

Dr. Teitel, though, cautions that when searching on their own, parents can often be misled by inaccurate, outdated or simply untrue information. The World Wide Web can be a wonderful way to get information but there is no filter or guide which can help parents to distinguish the true from the false. Reliance then, on physician as guide can help parents in their own searches for information so that they become more adept at filtering out the inaccuracies they encounter.

On the topic of useful information, UCSF is currently abuzz with the many projects that the recent merger with Stanford may produce, particularly in pediatrics. Dr. Teitel says that at this point, everything is very much in an early planning stage and is subject to change. However, he did mention one possible goal of producing a unified heart center, which would not only include both departments of pediatric cardiology but would also merge the departments of cardiology, pediatric cardio-thoracic surgery, and anesthesiology.

The benefits of this would be that parents could arrange surgeries, non-invasive procedures, or simple office visits through a single phone call, rather than through the coordination of several schedules and departments that it currently takes. Though this is only a potential plan right now, it could encompass enormous benefits for the parents and the combined departments.

In terms of purely medical developments, Dr. Teitel is encouraged by the progress being made in all areas of cardiology. “But the real area that is the future is molecular cardiology.” One of the goals for UCSF right now is to raise the money to get an endowed chair for Pediatric Cardiology. Such positions enable UCSF to look to the “future of cardiology” and bring in experts that are interested in this aspect of cardiology that seeks to answer the frequently asked “why ? “ of heart development and defects at the molecular level. The more knowledge that can be acquired about the very basics of defects and heart development, the better the chance of treatments to improve these conditions. “Knowledge is the key to everything.”

At the same time, Dr. Teitel agrees most heartily with myself and most other people in our network that it is frustrating how little funding and research goes to fields like Pediatric Cardiology. “You have 20 to 30 thousand adult cardiologists who make it very easy to get the message out about adult heart disease, as opposed to about 500 pediatric cardiologists.” Empowering the community by having reunions and writing newsletters certainly increases the public awareness. In general, however, it is adult diseases that get the attention. “That’s true of all pediatric specialties. Child advocacy is still at a very infantile level. There are people working on it, but we all have to work on it and it’s going to be a struggle.”

Among these concerns for the futures is what will happen to our children as they become adults and need specialists in adult congenital heart disease. UCSF has set up a clinic for adults with CHDs but clearly more needs to be done. “In the short term, most of us (the UC cardiologists) are not going to let go of our kids with more complicated defects.” Efforts are underway to train both adult and pediatric cardiologists in adult congenital heart disease. Nurses, too, are benefiting from shared information between the two fields. Ultimately UCSF would like to offer a fellowship specifically in this field as Dr. Teitel and many others foresee this as an area that will have to be developed in the next decade or so.

In the last moments of our discussion, Dr. Teitel again alluded to the enormous potential for benefit from the UCSF/Stanford merger. “Probably the greatest advocate for children is the Packard Foundation.” But it is not merely up to the doctors and such foundations to help increase public awareness of heart disease in children and thus prompt public demand for more research. “All of us, physicians and parents, must be advocates for the children.”
Tricia Christensen
Back to Contents

Announcements

Contact Us!

Disclaimer

Acknowledgments

Finally, a grateful thank you to all who sent in their membership forms and passed on information about our group to other families. Each new member is a priceless acquisition to our community.
Back to Contents

Graphics By Lolis
Home

This Page Hosted by Get your own Free Home Page