Hearts for Hearts Sake News

During a recent stay at UCSF, I could feel the tangible effects of the work we are attempting. Families were meeting each other, knew of each other from HFHS, and a lot of support was both given and received.

Knowing that you can get through a child’s hospitalization without feeling that dreaded sense of isolation, knowing the other families and their stories, and having someone to wave to and smile at, someone to listen during those moments when you don’t think you can take it anymore are some of the things I envisioned when I began HFHS. I am so glad this vision is beginning to come to fruition, and I look forward to the next year with even greater hopes of what we may accomplish.

On an equally optimistic note, I have discovered a loophole in the process of filing for our nonprofit status. If we file our state tax exemption along with our Articles of Incorporation, the $800 minimum tax fee is waived. This tax was quite a roadblock in our way of filing.

Since we have found a way to avoid this fee, we now have enough to file all our forms, and hopefully will have nonprofit status by the end of this year.

We do however, still need and depend on your donations for the many expenses and rising costs of our organization. If you support our causes and the effort HFHS is making on behalf of all California parents with kids with CHDs, please consider sending us a donation.

Checks need still to be made payable to Stephen Ellis, and mailed to:
Hearts for Hearts’ Sake
c/o Tricia Christensen
4050 Princeton Drive
Santa Rosa, CA
95405

Yet another of our goals was met this past month when we mailed out over 90 lists of matches for families in our organization. Our matching system and database are now fully operational. If you did not receive a match list, or if you noticed any inaccuracies in the listing of your information, please inform me.

In addition to the match lists, we are now in the process of trying to arrange group meetings in the various counties HFHS serves. Since we serve such a wide area of California, it is essential that I have a group leader in each county to co-facilitate meetings. If you would like to help coordinate monthly meetings in your area, please contact me.
Back to Contents

A Thought or Two

Unfortunately, CBS did not choose to present or discuss the other viable option for HLHS, Norwood, Glenn and Fontan. In such, I think they created a false impression that transplant is the only available option for families with kids with HLHS.

If you chanced to see the show, and agree with me that the information should have been presented more completely, I invite you to consider writing to CBS. The email address for the program is eyewitness@cbsnews.com

I am always encouraged by any media coverage of CHDs. And I appreciate CBS’ commitment to promoting organ donation. But I think it is the responsibility of all us, parents and physicians alike, to encourage the media to present their information in a complete and truthful manner.

It is really a disservice to all of us when the information shared is misinformation, and thus gives the general public false impressions or ideas about the options available to our children.

As parents, we occasionally must confront the ignorance of others in our private lives and our circle of acquaintances. Efforts on the part of the media to alleviate rather than add to this burden should be strongly encouraged.
Since printing of this newsletter, Public Eye has been cancelled for the Fall lineup.
Back to Contents

Welcome Packard Families

Also, if you primarily use the services at Kaiser, Oakland or Valley Children’s don’t feel that this organization is merely for UCSF families. HFHS aims to serve all families with children with CHDs. We look forward to your input, and your participation in our community. And I personally look forward to building strong relationships between each of these wonderful hospitals and our organization, and also in meeting many of you in person, by phone or email.
Tricia Christensen
Back to Contents

Featured Family-- Ed Craine and Judy Orloff

I know little of the experiences of others but for us events have never gone as planned. Here then, is one of our stories:

May 3,1993
It has been almost eight months since Cassie had a stent placed in her heart. Echocardiograms, EKGs and chest x-rays following her progress had revealed no problems -- at least none that we knew about. So it was a bitter surprise to receive a call from our cardiologist informing us that Cassie needed a cardiac catheterization and a possible expansion of her stent.

Both Ed and I were unhappy that we hadn’t been informed sooner, since the echocardiogram indicating the problem had been performed six months earlier. Our doctor tried to reassure us that this was no emergency and that the procedure would be low key.

Two weeks later we arrived at UCSF for a battery of “pre- operative” tests and a blood donation by me (just in case). Early the next morning, after Cassie’s IV was in place, we learned that the test results which brought us here were not as bad as we had been led to believe. So why were we here? Catheterizations do carry risks. We were irate and refused to let the nurse wheel Cassie away until we saw the cardiologist performing the cath.

When he arrived he clarified and explained the issues that concerned us, and seemed to appreciate our frustration at having been told only a partial and erroneous version of Cassie’s problem. Her pressure gradient had not increased as we had been told, but the leakage in her aortic valve had. Based on this information, we agreed to the procedure. By the time lovely Sarah, the cath nurse, came to escort Cassie to the lab. Our dear girl left us calmly. She simply asked for her headphones when we said good-bye at the elevator.

Ed and I went to Cassie’s room to wait. Several hours passed before we heard that the catheter tubes had cracked the stent. The doctors were now deliberating on whether to try placing a larger stent over the broken one to keep it in place, or to operate and remove it. We were dumbfounded, angry, and worried. No one here at the time had ever placed a stent in a person’s myocardium and we knew from our previous experience that it was a very difficult procedure. And surgery?? We were totally unprepared for that. Dr. Castaneda in Boston was Cassie’s surgeon and we had every intention of having him carry out any future operations.

In the midst of our worry we were working hard to stay calm and level-headed so that we could clearly consider our options. We decided to call Dr. Castaneda even though he was 3000 miles away. He recommended placing a new stent because he said, surgery might entail replacing the aortic valve, a conduit and moving the coronary artery, no small task.

It wasn’t long before we got the news that a piece of the stent had dislodged and descended into Cassie’s abdomen. There was concern that other pieces might break off and cause clots in any part of her system, including her brain. The doctors wanted to operate.

We had never met Dr. Hanley, the surgeon, and were eager to make personal contact with him. But it was 6 p.m. now and we learned that he had gone home early with the flu. It was almost more than we could bear. We signed papers for surgery that night but reserved our right of refusal until after we met Dr. Hanley at 6:30 the next morning. He seemed to be genuinely empathetic towards us and our situation and was confident that surgery was the best solution. We made the choice to go ahead.

At 7:30 a.m. Cassie was wheeled away sleeping. 6 and 1/2 hours later we received word that the stent pieces had been recovered. Yet the most difficult part of the operation was still to come.

Some wonderful friends arrived to wait with us or be sent away or serve in whatever capacity we needed. They came because they had to, not because we asked. I had, however, made calls asking people to hold us in their hearts and thoughts. And I felt very held and supported throughout that long day and those that followed. I am so moved by the love and support we have received.

The news we’d hoped for finally arrived at about 5:30 p.m. The obstruction causing the stenosis had been removed and Cassie’s own aortic valve had been repaired without an artificial replacement or need for a pacemaker. Cassie had survived a 10 hour operation following a 7 hour cath from the previous day. The operation had been a success! I have no words to describe the relief and gratitude I felt and still feel.

By 2 a.m. our girl had pulled out her breathing tube and we were summoned to try to comfort her (as we had requested). “I want to go home” were her first garbled, hardly discernible words. “I’m thirsty, I’m hungry” followed soon after.

Because of the well of air in her stomach, Cassie would not be allowed to drink until 8 am, nor eat until the following day. That would be three full days without food. I sat by her bed and held a tube that fed her oxygen so that she wouldn’t have to bear the breathing tube down her sore throat. She drifted in and out of sleep, asking me over and over for water, food, to go home, and telling me that she hurt all over. It was an agonizing 6 hours before she could finally drink.

The next night we got news that the doctors had discovered yet another piece of the stent lodged in Cassie’s upper right leg. We had the choice of having it surgically removed, snared by a catheter tube, or left to be monitored. Since it was now Friday, the doctors told us they would discuss these options with us further on Monday.

We pondered the possibilities throughout the weekend, worrying about the need for yet another major ordeal. When we learned on Monday that the risks of acting might cause permanent damage to her femoral artery, we all agreed to do nothing. If a problem presented later, then we would act.

During this time Cassie was in intensive care. A nurse there asked me whether her personality seemed familiar since time spent on a heart lung machine can alter personality. Gratefully, I recognized Cassie as being fully herself. She wanted those tubes out and wanted to be out of intensive care.

The nurse told us that Cassie had spoken sooner than any patient she had ever had. And Cassie surely did want control over her life back. “The nurse said I can’t sit up, but I can if I want.” Still her spirits hit bottom the following morning. She was inconsolable and nothing interested her, not a home-made story, not even presents.

Later that same day, Cassie had a reaction to codeine and became extremely hostile, kicking me and refusing help though she needed it. Upon waking several hours later, however, she was calm, sweet and loving -- ready to begin her next day-- it was 2 a.m.!!

A few more days passed. Tubes were removed, followed by stitches, then tape, and pain medications were reduced to Tylenol. Visits from friends and to the playroom brightened and eased our stay. And after 8 long, eventful days we were ready and able to go home.

The doctors agree that Cassie will need a new aortic valve someday . Until then, I hope we will remember to laugh and love and live together as fully as we can. Life is so precious and precarious.

AFTERWARD
A few months later Cassie did begin to experience bloodflow problems in her leg as a result of the remaining stent piece. That’s another story, and another hospitalization that turned out unexpectedly and is still in process.

Meanwhile, Cassie is living a normal, healthy life as we await her next operation. We are told she will have her aortic valve replaced. We’ll see....
Judy Orloff
Back to Contents

Facing A Cardiac Cath?

At UCSF, the general policy is that you arrive at the hospital the day prior to the cath. If you live out of the area, you will probably want to arrange lodging for two nights. Many children are released from the hospital on the same day as the cath, but I wanted to make sure we had a place to go if Gerard ended up staying overnight. As it turned out Gerard did stay until the morning after the cath, so it was well that we planned ahead for this contingency.

We chose to stay at Birdsall’s Guest house, located just a half block from the hospital. The accommodations are by no means luxurious, but they are clean, private and spacious. Another of our HFHS families recently stayed at Moffatt House, located 2 blocks down from the hospital on Hugo Street. They too found this Bed and Breakfast to be perfectly adequate and clean.

On that first day, you will see one of the cardiologists for a general exam and also so the cardiologist can go over the process with you and obtain your written consent. Your child will probably have an echo, a blood draw, and you’ll have to go through the admission process. In our case, this took about 4 hours, so you may want to bring snacks for yourself and your child, as well as any portable toys or something to keep your child patient through the waiting periods.

You can cut down this time a little by making contact with the Admissions Office a few weeks prior to the cath and asking them to preadmit you over the phone. Be sure to have any information about insurance, approval numbers, CCS or Medi-Cal handy when you do call. And then when you get to the admitting process, make sure that you inform the receptionist that you have been pre-admitted over the phone, so that you don’t have to sit waiting for long in the Admissions Office.

One of our greatest successes of the day was bringing one of Gerard’s favorite videos to watch during the echo. He is just shy of two, so I was concerned about how he might react to the echo and whether we’d be able to get him to lay still for more than a minute. The echo lab does have some tapes available, but I think that bringing your own if your child has favorites is even better. Gerard amazingly lay still for 45 minutes and watched his Sesame Street Songs video twice through.

Also helpful on this first day was that we saved the necessary blood draw for last. This makes a great deal of sense, because especially with young children, once you’ve done that, it’s unlikely that you’ll get any cooperation from them for a simple exam. This first day went very smoothly for us, something I really hadn’t expected.

That night we were also successful in planning something “fun” for Gerard. We visited with one of our HFHS families in the East Bay and Gerard played to his heart’s content. If you can, and time permits, try to plan an enjoyable activity for the evening prior to the cath. I dreaded having to chase Gerard through a guest house for 5 or 6 hours with really nothing to do. Finding him a place to play, romp and forget the difficulties of the hospital was wonderful for us.

So far I felt pretty confident about how well Gerard had done, but then things when a little downhill for us. We all know how much anxiety and stress these procedures can cause for parents. I confess that I was only able to get an hour or two of sleep, and finally gave it up as a lost cause. By later that day I knew I should have tried harder. Being physically exhausted made it a lot more difficult to cope with the stresses of the cath day.

My second mistake was not forcing myself to eat while Gerard was actually having his cath. I didn’t take the opportunity to sit down and relax during the 3 or 4 hours that he was in the cath lab. Instead I fretted, fumed and paced the halls, drank way too many caffeinated beverages, and didn’t allow myself any down time.

As it turned out Gerard’s recovery process was very difficult. He had a somewhat psychotic reaction to the various drugs he received. Neither my husband nor I could really leave him for more than a minute because he was very distressed and needed our constant attention. This was hard enough on its own, but the combination of it with my having had too much caffeine and no food made it a lot worse on all of us. So even if you don’t feel that you can, I would strongly recommend that you take the time during the cath to try to relax, and definitely to eat something.

Another thing I found particularly comforting was bringing my own blankets and pillows for both my husband and I and for Gerard. Having the things that reminded our family of home, that spoke of comfort and safety were very beneficial. Gerard held onto his favorite “blankie” all night.

Anything that your child particularly loves or is attached to that you can bring with you will help your child through this difficult day. Once your child can eat, bringing along a favorite snack can also be a way to provide comfort.

There is nothing that can make this day easy or enjoyable. But there are things you can do to offset the stress for both yourself and your child. When your child is recovering, he or she will need you to be there to nurture and to love, to comfort and to soothe. This can be demanding, indeed. Your capacity to do this and to advocate will be strengthened if you take care of yourself. Save some of that nurturing for you! Take advantage of the quiet moments to eat, sleep ,or shower. Take care of your needs so that your child receives the benefit of your full capacity to care for him or her.

Going home, possibly to other children as well can be taxing too. If it’s possible, plan to make the few days after the cath “downtime” days. Don’t expect a lot out of yourself or out of your kids in terms of behavior. There is a gradual readjustment to “normal” living again.

If you can, enlist family members or friends to bring in a meal or do a bit of light housecleaning for you. A little gift for the kids at home can also help break the ice and offset some of the scared feelings they may have about having been “left” at home or with other caretakers.

When we returned home, the most healing thing for my kids was simply to climb on the couch with me, snuggle under a few blankets and watch a favorite video. Having this time to be together, to do a familiar and enjoyable thing, was a reminder to my children that most days, this is how life really is.

A cath, or any other medical procedure interrupts the normal flow of family life. We all need to take time to readjust. But that adjustment does occur and we again find ourselves in the comforting and familiar routines that make up our family. It can also give us a new appreciation and value for our family, and a way to grow more closely together as we learn we can and do survive and surmount these difficult times.
Tricia Christensen
Back to Contents

Featured Physician-- Dr. Stafford Grady, Jr.

Dr. Grady did both his pediatric training and PC training at Boston Children’s. He has been in practice for 16 years and currently runs a private clinic, in conjunction with Drs. John Owens, Mike Griffin and Rhonda Lapin in San Jose. He also maintains hospital privileges at both UCSF and Lucille Packard Children’s Hospital (Stanford).

I was immediately interested in why Dr. Grady chose to work independently of a major hospital, and what he felt the differences were between running one’s own clinic as opposed to being part of a hospital staff. Much of what he does is of course similar to those who work in larger hospitals, but one clear difference is that the focus is almost completely on patient care.

Early in his training, Dr. Grady concluded that he really enjoyed the clinical aspects of cardiology the most. Shaping his own clinic, and having his success as a doctor evaluated primarily by the patients he cares for is immensely gratifying.

Dr. Grady likes the personal autonomy, the ability to make decisions about what types of equipment to purchase, the flexibility in terms of running clinics. He is his “own boss” and as such, takes a pride of ownership and feels that he has a personal stake in how each aspect both in a business sense and in a patient sense is handled. He also enjoys the fact that he can more easily develop long-term relationships with his patients, because his whole focus is on the clinical.

Not that having the sole charge of maintaining a business is always easy, or that doctors who work for hospitals can’t or don’t establish wonderful relationships with their patients, but the choice and autonomy is “gratifying” to Dr. Grady.

Not having ties to one particular hospital also provides the freedom necessary to send patients elsewhere. Dr. Grady related one case of a patient who was born with Transposition of the Great Arteries at a point in time when very few arterial switches were being done. Rather than send the boy to a local hospital, which had done only a few such surgeries, he sent the family to a hospital with more experience with this particular surgery. The surgery was successful, and that patient is now an active teenager.

Dr. Grady’s example illustrates not only the benefits of autonomy from a large institution, but also that the good of the patients depends on the private practitioner being aware of the many changes in pediatric cardiology and where the best centers are for different types of repair or treatment.

Though Dr. Grady and his associates do not for the most part, start and write research projects, they actively participate in the process by following patients involved in them, and by reporting their findings back to the primary researchers.

But with the primary focus on treating patients, they must, to be successful from a purely business perspective (and from a personal perspective) both keep abreast of the current trends and actively cultivate excellent relationships with their patients.

I asked Dr. Grady to note particularly positive changes in PC during his years in practice and also to tell me what one thing he would particularly like to see change in the coming years. He is encouraged by a significant difference in the philosophy of approach toward children with heart disease. “In the old days, the feeling was to wait. People palliated and did what they could and left children with a lot of residual burden of illness, and a lot of stress.”

Conversely, now doctors try to figure out the precise nature of the problem, and attempt to fix it as soon as possible while preserving the natural heart function if possible. The growth of the child, and the cardiac structures of the child are seen as an advantage. Size and weight are lesser issues to the central question: “Can you fix the problem?”

Reflective of this trend, Dr. Grady would most like to change the limited access to good medical care: When the issue becomes “It can be fixed, but not here.” He would like to see “no impediments to children and families getting the best cardiac care available. Irrespective of insurance, country, doctors, lack of insurance or socio-economic status, the same standard of care should exist for all children who need cardiac care.”

Personally I couldn’t agree more, but it is an ambitious goal. However, Dr. Grady’s enthusiasm for his field and his deep concern for his patients make it seem all the more possible.
Tricia Christensen
Back to Contents

Bravehearts

We ask your thoughts and/or prayers for the following children and their families:
Noah Mulder(parents Doug and Laura) -- the fontan in late August, UCSF
Johnny Silva(parents Veronica and John) -- cardiac cath in July, Oakland Children’s.
Henry Holtz (parent Kim Cuscaden) -- Kim requests your continued prayers for Henry. After undergoing 3 surgeries in May, he suffered a cerebral hemorrhage and continues to do very poorly in the hospital(UCSF). Our hearts go out to Kim and her family as she faces this difficult and fragile time.

The following children underwent surgeries and procedures during the past three months:
Jesse Dennis (parent Tami Dennis)-- cardiac cath
Gerard Christensen (parents Tricia and Allen) -- cardiac cath
Eli Nash (parents Lisa Rasmussen and Burr Nash) --Fontan
Liam Booth (parents Brenda and Bill)-- unifocalization
Timmy Sebastian(parent Sonia Sebastian) Mitral Valve replacement.
Samantha Carter (parents Shawn and David) -- cardiac cath and kidney surgery. Fontan September 10th.
Sarah Nelsen (parent JoAnna)-- cardiac cath.

We all know how strong and brave our kids are, how well they meet the challenge of surgeries and procedures that would scare adults. They truly deserve to be honored for their fight to live and enjoy their lives.

Please let us know about your child’s upcoming or past surgeries so that we all can hope and pray for smooth surgeries and a quick return to home and wellness.
Back to Contents

Announcements

Help Wanted

Tell Your Story

For medical professionals reading this, we welcome your input and any articles of general informational purposes for parents.
Back to Contents

We are also indebted to Miriam Ellis for her generous and inspired contribution of artwork, and to UCSF for supporting our organization through printing and mailing our newsletter.
Back to Contents

Disclaimer

No advice offered here can in any way take the place of the individualized care your child receives from his or her physicians.
Back to Contents

What is HFHS?

How to Join Us?
You can reach our warmline and business phone at : (707) 525-1558( 8am-9pm)

Email us

And you can visit our website which contains back issues of our newsletters, as well as other information tools and links.
Back to Contents

Images Provided by
Back to my home page.

This Page Hosted by Get your own Free Home Page