Chelsea Ann Umbach

A Celebration of Life

From the Alumni Columns magazine of Nonwestern State University of Louisiana

Chelsea Ann Umbach (2007) is recovering after a long-awaited and life-saving heart and lung transplant that took place in January. Chelsea, an alumna of the Louisiana Scholars’ College, received the transplant at the University of Alabama at Birmingham hospital, after an arduous physical and emotional journey.

Born in New Orleans in 1985, Chelsea was two days old when she was found to have an enlarged heart. After a surgery at one year of age, Chelsea lived normally until age 15 when she was diagnosed with Primary Pulmonary Arterial Hypertension, an incurable condition of continuous high blood pressure in the pulmonary artery.

Despite her health difficulties, Chelsea persevered, determined to live life to the fullest.

At NSU, Umbach completed her liberal arts degree and two minors, was valedictorian of the Scholars’ College graduating class and president of the Alpha Sigma Alpha sorority. After moving to Birmingham to be close to the UAB hospital, she enrolled in the UAB graduate program, seeking a graduate degree in English, completing coursework from her hospital bed. She earned top grades by sending in her work electronically and participated in class discussions through video conferencing. This accomplishment was featured on a local Birmingham television news program.

Chelsea’s full story and updates on her recovery are available at her family’s website.

March 28 brought another celebration when Chelsea and her fiance Robert were married in New Orleans.

Updates

May 24 and 25: Chelsea and Robert joined us for a boat ride yesterday and snorkeling in Vortex Springs today. The smiles on their faces were priceless. It’s the first time in years Chelsea has been able to be totally immersed in water. She had missed it dearly. Welcome back Chelsea and Robert.

Sunday, March 28: Dreams do come true…and it can happen to you (if you’re young at heart). Today was a day planned for months in advance with the hope that, somehow, a miracle would happen between then and now…and it did! Today, in front of over 100 friends and family, Chelsea and Robert were forever joined. The ceremony took place in the Peristyle at New Orleans City Park. For those not in attendance, hundreds of pictures were taken, and will be posted shortly. (Cindy will have more to tell, too.)

Friday, March 19: Today’s my last day in Birmingham before Chelsea and Robert get to go home for a visit. And what a visit that will be too. We wish for beautiful weather and happy people all the way around. Today’s rehab was exhausting again as the stronger Chelsea gets, the more they require of her. Clinic appointments were great and the world is looking better every day.

Thursday, March 4: The world is a wonderful place. She is NOT being re-admitted. Yay. Her numbers are marvelous. Thank you Jesus. And they say she needs more salt. Hehe. Go figure.

Wednesday, March 2: Finally, we made it back home from all day at the clinic. Chelsea gave up over 11 test tubes of blood plus had a surprise cardiac cath through the groin and situational starvation. suffice it to say that today was not fun but it was also fantastic in that she was not admitted back into ICU. Thank God for small favors.

Tuesday, March 2: OPTN: 1988-Nov 2009, there have been 1,018 heart-lung transplants in the entire nation. 69 people still wait for this surgery. Chelsea was number 31 for UAB and the state of AL. This is compared to heart transplants, which from 1988 to Nov 2009, the nation over, have had 47,303 performed and lungs have had 19,634 transplants in this amount of time. But Chelsea's particular type, not so common. Chelsea is blessed.

Friday, February 26: Today was another fantastic day for Chelsea. to begin with, she was at home with her recliner she loves so much. Because Robert still has to go to work everyday, Chelsea was kept company by a good friend who drove in from Atlanta. Chelsea was able to walk and talk at the same time. This had not been possible for quite some time as she did not have enough breath to do both. We thank God each and every day.

Thursday, February 25: Chelsea’s schedule today: Left home at 6:30. Slept well. Side fine but sore and still leaking. Feel tired but fine. At Kirklin Clinic waiting for labs. Then p.f.t., then chest xray, then pharmacist then lung clinic then pharmacy then home for lunch and then a “nap” which will probably be a few hours. Looking forward to that.

Tuesday, February 23: A good friend of Chelsea’s and mine, from Atlanta, is staying with Chelsea this week, taking her to her appointments and assisting with her home care. I head back there for next week’s appointments and assistance followed by another good friend whose lending hand is accepted and appreciated.

Monday, February 22: After two long months of some serious ups and downs, Chelsea is being released to return to her apartment — as long as she stays close so she can return to clinic four days a week. This is all good.

Thursday, February 18: Today we can see the sun shining in the distance. Chelsea is totally off the heart contracting drug (Dobutamine), both her chest tube and neck IV line come out today. O2 weening is next and then she will be free of medical entrapments. She will be able to walk her laps more easily. She'll stay here while building strength and nutrition. Praise God and all of you, our appreciated friends and family.

Sunday, February 14: Chelsea has had a nice day. It was one without a procedure. of any sort. Though she did not get to see Robert, they did get to talk to one another because she now has breath enough to speak. She and I colored together before she went back to stitching and I to reading. Daryl, Diane and Dilaney stopped by for a visit on their way to Michigan. Then Mel popped in as a Valentine surprise. A very nice day indeed.

Wednesday, February 10: At only two liters flow, O2 sats are back up to 99 percent. The Lord is good. And, she’s sleeping.

Tuesday, February 9: Good news! Dr. McGiffin, the transplant surgeon dropped by with a smile on his face. It seems Chelsea”s chest x-rays are looking better each day. By the way, there have been only about 15 heart/double-lung transplants ever done here at UAB. Geaux Chelsea geaux! Keepa you fingers crossed baby and please say those prayers. Thank you.

Saturday, February 6: Today has been a decent day for Chelsea. The plasmapheresis was postponed until tomorrow but the doctor did extract over 400 ml of fluid from the pleura surrounding her left lung. That should make it easier to breathe. The fluid around the other lung is in an area that cannot be reached externally.

Friday, February 5: Finally some really good news: Chelsea's lungs are not in rejection. Hip hip Hooray. The plasma-pheresis is a result of anti-bodies against the heart. On our way to correcting that wee issue. We are still planning Chelsea’s and Robert's union in March. If I don’t have your e-mail, please send it to me either here or through the dive shop’s e-mail. Should be a joyous occasion for all.

Thursday, February 4: Today is a terrific day. Chelsea woke up to breakfast at the ready and she ate it all. (P.S. - she has been ordered to eat 4000 calories a day but without refined sugar and with low sodium). Believe me when I tell you it’s a challenge. She walked two laps unassisted and is very motivated to get better and get out of here. Please send her strong energies and prayer. Thank you!

Friday, January 29: I came home today. And, of course, today is the day they removed her 100+ staples. Her incision is from under one arm, across the chest beneath the breasts, and up under the other arm. It is called a clam shell cut. They say she can wear a bikini now. Ha! (As if she would ever wear a bikini.) But…another step in the right direction. Thank you friends, family and God Almighty.

Thursday, January 28: Oops! She agreed to a little sleep assistance. It worked and she got a bit of rest until.… breakfast arrived. There is nothing wrong with Chelsea’s appetite, just not enough room in her belly for everything she wants. That’s my girl.

Wednesday, January 27: Chelsea got back from her heart catheter. and immediately set about chowing down. It’s a good thing Robert keeps her well stocked with food ’cause the hospital still hasn’t brought her lunch and its 1:15.

Monday, January 25: Chelsea sat up for a good while today. Wore her out.

Sunday, January 24: Kidney docs say Chelsea’s kidneys are responding nicely. She has been through three dialysis machines as they kept malfunctioning. After 72 hours, she will switch to intermittent sessions while she hopefully gets up and starts walking again. Yes, she is still on the vent but that should be backing down with dialysis. As her kidneys improve, so should her breathing. For now, she continues to be sedated.

Wednesday, January 20: And they’re off (Chelsea and Robert) making the rounds.

Tuesday, January 19: Both Chelsea and I got a decent amount of sleep. Of course, we were awakened three times between 11:00 and 6:00 for various things but still sleep did occur. Yay. Today will be chocked full of activity.

Monday, January 18: Today marks the turning of a corner. Chelsea is determined to get over the surgery and move along. There are wonderful things awaiting her and Robert’s life as a couple. March 28 is a date to remember and put on your calendar. Yee Haa. It’s gonna be fun and beautiful all at the same time. If I don’t have your address, send it to me through the dive shop e-mail. Thanks and we look forward to seeing you soon.

Sunday, January 17: Today is another day and we look forward to continued progress. The reason for the migraines was discovered through yesterday’s MRI. Chelsea had some small bleeds in her brain that hopefully have not and will not continue. She is getting another CT scan right now to compare against previous ones. Keep the faith and the prayers. Thank you.

Friday, January 15: Chelsea’s migrane was abated by a tiny bit of morphine. She was able to sit up and turn on the lights and TV. Then she was ravenous and I had to jump to get her some food. Yay baby. Now we look forward to getting the chest tubes out (soon?) so she can move about more easily. She walked at a pretty fast clip. Lunchtime now. Thanks for everything everyone.

Monday, January 11, 2:45 pm: I am back home for the day to re-pack and head back to Alabama. Chelsea is sleeping a lot because the activity of walking and talking and getting washed and dressings changed takes a lot out of her. I am tired but elated at the same time. Can’t wait to have my girl back. Now we look forward to Chelsea and Robert publicly professing their love for one another at the end of March. Stay tuned.

Sunday, January 10, 2:30 pm: Chelsea’s doctors are very pleased with her progress. She has the love and support of thousands of people like you. I thank you most sincerely. Chelsea is up and walking and being released from CICU tomorrow if not today. Wh thank God and her team of doctors, nurses and her transplant coordinators. Happy 2010 to us all.

Saturday, January 9, 12:00 pm: The real Chelsea is back. She feels and looks good. Her wit is back in swing and her attitude is fantastic. Today is the day for her to walk the halls and terrorize the nurses and staff in general.

Saturday, January 9, 6:00 am: Chelsea got her hair washed with real soap and water and feels much better. Chelsea will forever regard these organs as the gift they are. She will take good care of and respect them.

Friday, January 8, 7:30 pm: Chelsea actually said these words, words I have not heard her say in a very long time, “I feed good.” Wow! My heart soars and my spirits fly.

Thursday, January 7, 9:00 pm: Dr McGiffin just paid us a visit and told us that Chelsea’s echo showed a good, strong heart without fluid build-up. Her lungs are better than yesterday but still a little wet. They take longer to clear-up but all is within typical findings. Hip Hip hooray.

Monday, January 4: After a seemingly interminable wait, Cindy’s daughter Chelsea finally underwent the heart/lung transplant she needed to survive.

Monday, June 15: Today, just five days after getting a similar summons, Chelsea was called and told to stay by the phone and not to eat or drink anything. Sadly, once more, she was canceled after having spent time and giving blood for the various tests. Lungs are apparently very delicate organs that begin deteriorating immediately upon death. Once again, we ask that you pray both for the family that lost a loved one and for Chelsea to keep up the great spirits and that she will eventually get the organs she so desperately needs.

Wednesday, June 10: Chelsea got a call to go to the hospital to await further word with regard to a possible transplant. However, Chelsea was told in advance that there was suspicion of pneumonia in the right lung. The suspicion of the diseased lung was true and again, Chelsea did not get the much needed double lung and heart transplant.

At 1:00 am, she and her fiance, Robert, went home to recover from the long night and of her having had so much blood taken in preparation and hope things would turn out good. Alas, we sit await another day.

I do ask that we all pray for the family that lost a loved one on June 10, 2009. My heart and prayers go to them with the deepest and sincerest of thanks for the offering to help another in need. God Bless them all.

Friday, April 17, 2009: It was a most interesting day for Chelsea and those who love her. She got what was thought to be the ultimate phone call telling her that the much needed and awaited organs, two lungs and a heart, were available and a seemingly perfect match. After much ado and serious surgical preparation, the donor organs were found to be full of infection and therefore not acceptable for transplant. Though it is disappointing the transplant did not take place, we are all very thankful the infection was found before it was too late.

Chelsea was sent home to wait until another day and to recover from this one. Please keep your prayers and well wishes going strong for Chelsea. My prayers are such that she have the opportunity to be the miracle transplant patient everyone needs and wants; the hospital (UAB), her doctors, her family, friends, Robert, and naturally, herself.

February 4, 2009: At 9:00 pm on Friday, September 26, 2008, Chelsea got a phone call from her transplant coordinator with a “heads-up” not to eat or drink and to stay near the phone as there was a potential donor for her. At 2:00 am the coordinator called back and told Chelsea to go to the hospital for preparation. She, her fiance Robert and I (I just so happened to be visiting that weekend) went to the hospital to get prepared for the real possibility of the transplant occurring. Unfortunately, after several hours of testing and waiting, we were informed that one of the lungs was polluted with vomit. Therefore, we were sent home

Thanksgiving, Christmas, and the New Year have since come and gone. Chelsea is still hanging in there and taking classes for her Master’s Degree while remaining hopeful.

At 9:00 a.m. on January 26, 2009, Chelsea again got a phone call to stay near the phone and to restrict her intake of food and beverage. Later that afternoon, she was canceled as the lungs again were damaged and not appropriate for her body.

Keep Chelsea in your prayers and well wishes that 3 times’ the charm. Stay tuned and we will keep you posted.

And by the way, her boyfriend, Robert, proposed to her on Christmas Eve. The date is set for March 28, 2010. A future is planned, with God’s will and your prayers.

Background

Chelsea Umbach, daughter of Cindy Caldwell, granddaughter of the late Harry Caldwell, founder of Harry’s Dive Shop in the Greater New Orleans, was born April 12, 1985. At two days of age, she was found to have an enlarged heart and was referred to Ochsner Hospital for further evaluation. It was determined that she had AV Canal and would need surgery either when she weighed 20 lbs or was a year old, whichever came first.

A week before her first birthday, Chelsea was admitted for surgery. After numerous ups and downs with the surgery and her projected future, she was sent home with a host of medications. She seemed to recover nicely.

Chelsea’s life continued as such until her 15th year, when she got the flu two times inside of three months. While lying in bed with high fever, her heart beat so hard that it visibly shook the bed and she was short of breath with the slightest degree of activity. Some suggested she was lazy or merely out of shape. One doctor that could not find anything to support her claim advised that if she turned blue, she should go back to see him, otherwise, it was all in her head.

In August of 2000, with Chelsea being an avid scuba diver, she and I made an attempt at a rather strenuous dive but we had to abort because Chelsea’s chest hurt and she was lightheaded. We then realized and admitted openly that her problem was more than in her head. We made an appointment with a different doctor. While still conducting the EKG, he recommended that she see a cardiologist at once.

We learned that Chelsea had Primary Pulmonary Arterial Hypertension (PPAH), a disease for which there is no cure. We cried together. While still in the doctor’s office, we decided that we had no choice but to accept the situation and deal with it. PPAH was something she might be able to manage through limited activity and lots of medication.

Being of the sort that does not accept without explanation or cause, we began our own investigation of her disease. Everything we found was gloom and doom. We dug deeper, read everything there was to read, and talked to friends in the medical field. It was not pretty.

Chelsea was directed to Children’s Hospital for a cardiac catheterization of three different medications administered directly into the lungs. A probe was inserted into her lungs via the groin. Lung pressures were to be measured while each drug was administered as was to take about 3 hours. But because her pressures were so high (152 mmHg), the doctor stopped the procedure. Chelsea was sent to the Intensive Care Unit where she stayed for three days. We were told she could live another 2-5 years. The doctors had no answers, no cure, no treatments, no true hope. We were devastated. The only bright spot throughout was and is Chelsea’s unfailing spirit and attitude.

While searching for information on the internet, I came across the name of a doctor conducting a double blinded study on a new drug to treat PPAH. This was a newly discovered disease and medical care was in its infancy.

Lucky for us, both the doctor and the facility were local, at the LSU Medical Center down the street from the dive shop on Airline (Tulane). Even better, the physician, Dr. Bennett de Boisblanc, worked at Harry’s Dive Shop in 1972. Dr. Ben and my older brother had been friends and dive buddies in their teenage years.

I called Dr. Ben and he remembered my family well. I told him of Chelsea’s plight and he asked how soon I could get her to see him. I put a sign on the door indicating a family emergency, closed for the day, took Chelsea out of school and we went to see Dr. Ben.

The rollercoaster of hope and despair was now in full swing.

Dr. Ben reviewed the records we carried with us. The cardiac cath (angiogram) from Children’s Hospital was valid for another three days. With luck, good timing and God on our side, Chelsea was immediately welcomed into the drug study program. She was to take 250 mg of a pill, an unknown, twice each day. Neither the medical professionals nor the patients knew whether the pills were the real drug or a placebo.

Chelsea began having headaches, facial flushing, arm pain, leg pain, and frequent sweats. As her mother, my heart told me that she was on the real drug, not a placebo. Chelsea was afraid to be so optimistic. When the time came to un-blind the study, it showed that Chelsea had been on the real thing, Tracleer, a.k.a. Bosentan, an endothelial antagonist.

But the good news was short lived. Upon completion of the study and because the FDA had not yet approved the drug in the United States, administration of it was halted. This caused Chelsea severe chest pains once again.. Her health declined and her future was grim. The doctors’ hands were tied in bureaucratic nonsense and though they wanted to give her the drug, they were unable. Pleading and tears proved ineffective at best.

After numerous contacts with Actelion Ltd, a bio-pharmaceutical company headquartered in Allschwil, Switzerland, and the Godliness of one warm-blooded man in particular, our prayers were answered. The drug was restored and Chelsea responded favorably.

Through the process of PPAH, Chelsea’s condition deteriorated over time and additional medications were tried. Some caused her greater distress while some had more promising results.

Because Chelsea does not outwardly appear ill, she is often improperly judged by her peers. For instance, her high school P.E. teacher gave her a C for not participating in various physical sports. It was discussed and agreed that Chelsea would instead be graded on other merits like attendance, dressing out, test scores and a willingness to learn.

Between her Sophomore and Junior years of high school, Chelsea signed up to go on a trip to Europe sponsored by the school system. Advance information of her illness and physical limitations were disclosed, recorded in writing, and accepted by the trip leaders. This should have been a great opportunity for Chelsea to travel with her friends and see Europe under the guidance and supervision of capable and caring adults.

To experience the numerous countries and cities as promoted, the students literally ran from place to place and running was something Chelsea could not do. As a result, she was left behind on the streets of London, short of breath, dizzy, alone, and scared. A fellow student missed her and went back to find her. The ultimate outcome was that Chelsea was placed in the care and custody of a cab driver, who did not speak English, and sent to a hospital in Switzerland before going to the airport, unaccompanied, to catch a plane home. Chelsea was left to her own devices and bravery. For this, I still do not forgive those that were permitted to organize and execute such an experience.

At the beginning of August 2005, Chelsea was to begin taking Viagra three times a day. Viagra is known to be effective in dilating blood vessels and increasing blood flow to specific areas and this was the desired effect needed for the lungs. Because of the publicity attached to Viagra, we had great difficulty getting the insurance company to approve a young, female patient for the extra large prescription. After lots of frustration and upset, she was finally approved. Armed with a large supply of Sildenafil (a.k.a Viagra), Chelsea moved four hours from home to Natchitoches, LA for her Junior year of college. ***

Along came Hurricane Katrina on August 29, 2005. Shortly thereafter, Chelsea’s symptoms of breathlessness and chest pains began to increase. Doctors knowledgeable with her were impossible to locate. Land phone lines were destroyed and cell phone towers were down. When cell service did come up, it was sparse and undependable not to mention swamped by the thousands of callers trying to locate family and friends. Hospitals were destroyed; records lost. Medical care was unavailable. None other than Katrina was to blame for the sudden and total change in medical circumstances, unforeseeable to the immense degree it was.

Like so many, Chelsea’s medical records were obliterated. We eventually reached Dr. Ben. While he knew of and could vouch for her need for ongoing medical care, there were no records to support her case or his word.

Dr. Ben was eventually offered the opportunity to work with Ochsner Hospital. Records and tests had to be reconstructed. After numerous appointments, much time and considerable evaluations, it was determined that Chelsea was an candidate for double lung and heart transplant. To get her to that point, she would need to begin yet another new drug.

She is up to 27 pills each day plus the constant infusion of a drug administered through an IV in her chest. Though this medication (Remodulin) is working well enough to sustain her, it is by no means a cure or even a long term fix.

Chelsea was sent to the University of Alabama in Birmingham (UAB) for evaluation as a transplant candidate and eventual surgery. Because she wished to carry on as normal a life as possible despite her unfortunate situation, the full week of medical tests was scheduled in Birmingham the week before her senior year of college.

In keeping with Chelsea’s glowing personality and perseverance, she sucked it up and did what had to be done. She was poked and prodded with needles, one of which was up her wrist for a nuclear study. She had scans of virtually every body part, underwent intense psychological studies, met with the transplant team, attended class on what to expect, and had meetings with each doctor responsible for her ultimate care.

Throughout, Chelsea’s spirits remain high. Naturally she suffers an occasional bout of depression but that is the exception rather than the rule. Point in fact, Chelsea was president of the sorority, Alpha Sigma Alpha, in Natchitoches, LA. She graduated Summa Cum Laude (top honors) from Louisiana Scholars’ College, a division of Northwestern State University, on 4 May 2007. Her degree is in Liberal Arts with concentration on Social Thought and Humanities with minors in Spanish and Philosophy.

Shortly after graduation, Chelsea moved to Birmingham, Alabama, to be closer to UAB in the event organs become available. So as not to be a 22 year old college graduate with no insurance, Chelsea enrolled in graduate school to keep her insurance in effect.

In the summer of 2006, Chelsea applied for Social Security benefits but was denied. Because she is a student and had not joined the full-time work force but is of legal adult age, she is denied benefits. With the impending surgery and recovery period, not to mention potential health setbacks and constant anti-rejection medications, she may not be able to work and pay into social security so as to make a future claim. We are at a loss but have not given up.

Chelsea has never asked for help. She moves according to her limitations with some days being better than others. She is independent and head-strong. She has the will to live, to go on, get married and raise adopted children as she cannot have any of her own. She looks forward to the day she can take a shower without having to tape up and bandage her IV site. She wants to go outside in the summer without worry of infection around the sweaty IV site. She wants to immerse herself in a soothing bath, go swimming, snorkeling, or maybe even scuba diving again. Her dreams and wishes are high. And like me, she is a victim of Wander Lust; she wants to travel and see the world.

It is I, Cindy Caldwell, her mother, who is asking for your help. She wants to live as normal a life as possible but she may never be able to work to the extent of supporting herself. She fatigues easily. Provided the surgery is a success and provided her body does not reject the gifted organs, this fatigue factor may or may not improve.

The insurance company currently covering Chelsea’s medical care has been wonderful but the fact remains that insurance will only pay so much and last for so long. The follow-up care and monthly medications will have large co-payments and travel expenses not covered by insurance. Living away from home and paying for out-of-state tuition in order to keep insurance is also costly.

We have received a few donations on Chelsea’s behalf, and appreciate them greatly. If interested or able to help by contributing, please go to the National Transplant Assistance Fund and if desired, you can make a tax-deductible contribution. Anything is appreciated.

Whether or not you are able to give money, we certainly appreciate your well wishes and prayers. Chelsea needs all the good she can get. We put our trust in God, the skills of her doctors, the availability of organs through the giving nature of another’s unfortunate demise, her fortitude, bravery, great attitude and continued good health in general. So it shall not go unnoticed, Chelsea has the loving support and care of her boyfriend, Robert Yates. He has been with her through thick and thin and promises to stay throughout. They love one another with their eyes wide open and look forward to marrying.

Further appreciated is the willingness of family, neighbors, employees, instructional staff and good friends to keep Harry’s Dive Shop alive and moving forward in my eventual absence while caring for Chelsea. Harry’s Dive Shop is her legacy and she wants it to survive and thrive. We thank everyone for their support.

Any fund raising ideas or events are appreciated. I am new to this and have no idea how to go about beginning. I spend a lot of my time keeping Chelsea and myself in good spirits and health. This is the ultimate test of will and faith. With your help and prayers, we will pass with flying colors. Thank you! We love and appreciate you all. — Cindy

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