Yet Another Post-transplant Email - I Finally Leave ICU after 18 Days!

Friday, December 22, 2006 11:26 a.m. (sent by Gene)

Dear friends,

News Flash: Jay is out of ICU!

I just wanted to send a quick note to share the good news... Jay just continues to surprise... on Tues. evening (12/19), she endured another round of complications that I was convinced would set her back. But Jay bounced back miraculously the next day, and then last night - after 18 days in ICU - the doctors pronounced her healthy enough to move to intermediate care!

Within the last 24 to 48 hours, Jay has:
* completely stopped using the ventilator; breathing all on her own. (She still has a trache tube as a precaution, but this likely will be removed within a few days. Should be able to talk soon.)
* started sipping drinks (water, Gatorade, apple juice).
* yanked out her feeding tube - for the third time! Nurses not happy about this development, but finally have caved in to Jay's persistence. They now say if she can eat enough food on her own and get sufficient nutrition, she can ditch the tube.
* ordered husband to fetch her a hamburger meal. He refused following doctor's orders; Jay not happy with husband.

That's all the good news I have for now, but it should be plently. Thanks for all of your prayers... they are definitely working.

I'm off to visit Jay in her new room...

Gene

Happy Birthday to My Liver

Today – December 3rd – is my other birthday.

Two years ago I had the liver transplant that saved my life. Last night, my husband and I reminisced about how the experience unfolded: THE telephone call that came midday on Dec. 2nd; a flurry of phone calls, arrangements, packing; the two-hour ambulance ride through a drenching thunderstorm; all the rushing, just to get to the hospital and then having to wait six hours for surgery to begin (the operation started around 1:00 am, which is why Dec. 3 – not 2nd – is my other birthday). And ultimately, good news that the transplant was successful.

I am grateful and humble when I remember this day and all that went before and after. There are many, many people to thank; please indulge me while I recognize just a few of them:

* First and foremost, my husband, Gene, who walked every step with me. I had it tough, but at least I was on drugs. He persevered through it all, God bless him.
* Carolyn, Chris, Happy and Dene, who traveled to the transplant center with us and helped Gene survive the hours of waiting both before and during my surgery
* Carolyn also visited often and was the positive force that kept Gene’s spirits up, spoiled the kids with Christmas gifts (Wii? Tiffany’s bracelet? I was NOT consulted about these gifts!) and was the glue that kept our world together
* Regina, who dropped everything and put her life on hold to stay with our kids for two weeks AND had our carpet cleaned while she was here
* Larry, who with Chris, helped our son transition into crew and made sure he always had transportation to and from practice
* Karen, who visited frequently, drove kids to and fro, and made sure the whole family received new pajamas on Christmas Eve
* Cari, who along with Carolyn and Karen, made sure the kids had a fabulous Christmas and plenty of gifts, including the leopard print desk chair
* Peggy and Dave, and Pam and Steve, who hosted our children several times and always at the spur of the moment
* Debbie, who was master of the “feed Jay’s family” schedule – no small feat – and kept it organized for many months while I recuperated
* Gary, with Dene, who took the kids on an eight-hour (one way) road trip to attend a family gathering, and who endured Dene’s absences while she babysat me once I finally returned home from the hospital
* Helen, the fabulous type-A powerhouse who drove two hours to visit me in the hospital and rub lotion on my feet (is there anything better?!), and together with her husband, Rick, secretly continue to do many good deeds that make the world wonderful
* Sally and Angie, who made sure our power bill got paid * Allen, who with Happy, brought me communion every week for months and prayed for me and my family
* Rosemary and Dick, who sent me a prayer shawl from their church in Huntsville

These are just some of the countless people who helped us time and time again, each and every one of whom I cherish. Thank you to these friends and family who were the key support system that sustained us. My sincere gratitude, too, to Dr. B, Laura, Theresa, Dr. S, Dr. K, Dr. Z, Dr. R and so many other medical professionals who kept me alive.

Dec. 3rd will always be an extraordinary day in my world. My family will celebrate tonight with a special dessert – chocolate chip cookies made by my daughter. Yeah!

For everyone waiting for or recovering from transplant surgery, I send you my best wishes. It can be a long, tough road but in the end, it’s well worth the struggle and sacrifice.

God bless.

Transplant Center Stats - Does One Bad Apple Spoil the Whole Bunch?

A front-page article in the November 21st issue of The Wall Street Journal, "Doing a Volulme Business in Liver Transplants," was thought-provoking and, ultimately, disturbing. According to the article, the non-profit University of Pittsburgh Medical Center (UPMC) hired an innovative and aggressive surgeon, Dr. Amadeo Marcos, to head its under-performing liver transplant program, with the directive to increase the number of liver transplants performed every year. Dr. Marcos doubled the amount of liver transplants conducted at UPMC, but this achievement was in question because "... he resorted to practices that some colleagues found questionable... he used more livers from older donors [and] transplanted some of these into relatively healthy patients for whom the risk-reward calculation was less certain. He used partial livers from living donors, and then understated complications from the controversial procedure."

My husband and I discussed this article and what it could mean to transplant candidates. Prior to my surgery, we did a lot of homework, including reviewing transplant survival rates for liver transplant centers within a four hour drive of our home. We wanted a transplant program that had the following: 1) most importantly, a track record of performing a reasonably large number of transplants annually (to help ensure that the surgeons and staff were highly experienced and that a liver was likely to be available when I needed one); 2) was close enough to our home that pre- and post-transplant doctor appointments wouldn't be too overwhelming; and 3) was part of our health insurance plan.

It never occurred to us that we should be concerned about the accuracy of the transplant data we reviewed. We knew that not every available liver was top-rate (from a young, healthy donor), but our transplant team explained that if there were any issues about the donor liver, we would be told prior to surgery and have the option of rejecting the liver. (Note: We were told that my donor liver was in excellent condition, so we never had a discussion about possibly rejecting it.)

I believe that the situation at UPMC was the exception to the rule, that most transplant centers, doctors and staff put patients, not profits, first. But the article raises a valid question and I don't know how it can be answered. How can you tell if a program is operating under a risky protocol? Do centers publish their donor organ selection criteria? If you believe the organ you're offered isn't acceptable, does it mean that you're a "troublemaker" and won't be treated fairly or objectively?

The article raises many questions and I'm very curious about possible answers. Please leave a comment and share your thoughts, knowledge and other questions - this topic warrants a healthy discussion.

A HUGE Medical Breakthrough - Stem Cells Used in World's First "Tissue-engineered" Transplant

I've often thought it would be much easier if I could just grow my own replacement liver... and it seems my wish may come true far sooner than expected.

Today's feature article in the British Journal TheLancet.com titled, "Clinical Transplantation of a Tissue-engineered Airway," describes how a 30-year-old Colombian woman whose airway was severely damaged by tuberculosis was transplanted with a windpipe (from a deceased donor) that had been altered with the woman's own stem cells. Although the patient has not taken immunosuppressants since her transplant in June 2008, her immune system has not rejected the transplanted windpipe.

What an advancement! Immunosuppressants are life-savers but they exact a tremendous toll and can cause serious side effects, including high blood pressure, kidney damage, liver damage, increased chances of infection or illness, anemia and/or high blood sugar, to name a few (depending on the immunosuppressant). Some of the side effects don't show up for years and transplant patients must take immunosuppressants for the rest of their lives.

Congratulations to the physicians, researchers and staff at universities in Barcelona, Spain; Padua and Milan in Italy; Bristol, England; and at the Hospital Clinic in Barcelona, all of whom participated in this ground-breaking procedure. Gracias, grazie and thank you.

Florida's Specialty License Plate for Organ Donation

On July 1, 2006, the State of Florida began offering motorists a new specialty license plate option: "Donate Organs. Pass It On."

In case you're unfamiliar with the program, Florida allows specialty license plates as a fundraising mechanism. Legislative action is required to establish a new plate and applicants must meet demanding eligibility criteria, including obtaining the sponsoring support of a state senator and representative. Once requirements are met and the Legislature approves the bill, the new plate becomes official and production begins.

Here are some stats about Florida specialty license plates for 2007:
- Florida has 109 specialty plates
- Over 1,562,000 plates were purchased (in 2007 alone)
- Most popular plate? University of Florida (more than 105,000 bought)
- "Donate Organs" plate was ranked 89th, with 1,101 issued

Pretty amazing, huh? (1.562M x $25 = a LOT of money!) The plates do more than raise funds; they also raise awareness. I'm a moving billboard of sorts, and I hope the plate reminders drivers following my car to become an organ donor.

I bought a "Donate Organs" plate as soon as I could, in June 2007 when I renewed my license plate. It's a colorful, uplifting design, don't ya think? The $25 fee I paid for the plate (above standard license plate fees) goes to Transplant Foundation, Inc., which is affiliated with the Miller School of Medicine at the University of Miami (Florida), and the money is used to increase awareness of and provide education about the need for organ donation.

I encourage all Floridians to consider getting a specialty license plate. Even in these tough economic times, $25 is an affordable way to support a cause that is near and dear to your heart (or liver, in my case). It's an easy way to help make our world better.

Another Email from My Husband While I Was in ICU

Monday, December 18, 2006 2:56 p.m. (sent by Gene)

Dear friends,

Anyone who knows my lovely wife knows that she operates on her own unique sense of time, which is a polite way of saying Jay often runs late. And that may explain why her recovery timetable differs from our expectations. At least that's my theory. But if there's one thing I've learned about Jay... it's to just let her do it her way. Might as well because you know she'll get it done right.

It's been two weeks since Jay underwent surgery, and she remains in ICU. But I think we're finally beginning to make some headway and hope to move to an intermediate care floor any day now. Many of you have expressed concern about Jay's long stay in ICU, but rest assured, she's been in stable condition throughout. She's just been stuck in neutral; every time she begins to get better she runs into some complication that stalls her progress. Fortunately, the doctors have witnessed all of Jay's problems before in other patients, and they've been able to find a fix for them out of their liver transplant "playbook."

Last Wed., the doctors performed a tracheotomy to help Jay breathe more easily. She was having a tough time getting off the ventilator but since the procedure has fared much better. Yesterday, she breathed on her own for 6 - 8 hours without any machine assistance! If she can build up her endurance to go 10 hours on back-to-back days, she'll probably ditch the ventilator for good.

A few days ago, Jay's body also exhibited the first signs of rejection. It's a frightening word but something transplant patients will have to deal with for the rest of their lives. Rejection can occur at any time and it can happen quickly or occur gradually. The good news is that there are several immunosuppressive medicines that should manage this problem. The doctors gave Jay some of these meds and they appear to be working well.

All things considered, Jay seems to be doing better. Her trache tube prevents her from talking out loud, but she's trying desperately to communicate. Much to her dismay, neither the nurses nor I can read her lips very well. One day Jay was really jabbering, and I couldn't make out a single word. I suspected that she was in a drug-induced haze and talking gibberish. So I asked her nurse, "Do you think she's lucid?" And before the nurse could reply, Jay shot me an indignant stare. No translation needed. I'll pay for that comment later!

Thanks for all your love and prayers... God bless,

Gene

Just Looking for a Little Respect from the Healthcare System and Its People

For the third week in a row I'm having to have blood work done, so yesterday I went to see the vampires (phlebotomists; it's my little nickname for them) at my local lab. A new tech insisted on searching both arms for veins, even though I showed him the ONE AND ONLY spot on my body where a vein can by found. He pinched my arms with those stupid rubber straps, had me pump my fists, wiped alcohol all around - and guess where the blood was drawn? Yep, exactly where I showed him to draw it in the first place.

I'm pretty steamed about the incident. How 'bout a little RESPECT, people? Maybe an ounce of compassion? Would you just LISTEN to what I'm telling you?

In the past 2 1/2 years I've had three major surgeries, six or eight medical procedures and about 75 blood draws, each of which required a needle in a vein. I've always been a "hard stick" and these days the sticks are more difficult than ever. Why did the tech disregard my comments? Did he believe he could discover a blood vessel that the other dozens of techs couldn't find? Because I insisted that there would be no iffy attempts, at least I didn't have to suffer through another needle digging around under my skin, hopelessly searching for a vein that wasn't going to cooperate.

This tech isn't alone - the scenario occurs repeatedly. To the phlebotomists of the world, I say, Respect your patients and heed what they are telling you. Especially those of us with chronic illnesses - we already suffer enough.

Maybe, at the end of the day, it's simply putting the Golden Rule into play: Do unto others as you would have them do unto you. As it applies elsewhere in life, this adage can work in the world of medicine. I, for one, will be grateful.

Paying for Transplant Surgery - Can You Afford $500,000?

How much does an organ transplant cost?

For most of us, more than our house. FAR more. In 2007 the average price of a house was $266,200; the average estimated cost of a liver transplant was $519,600 (www.transplantliving.org). Who has that kind of money in the bank?

My transplant expenses are close to a million dollars now, due to numerous complications and six months of Hepatitis C treatment (which alone cost thousands of dollars per month). I’m very fortunate: Our family has good medical insurance and the vast majority of our bills were covered by insurance. But we’re still paying off thousands of dollars worth of deductibles, co-payments and co-insurance. And some expenses are ongoing: Prescriptions run about $200 per month (that’s our out-of-pocket cost).

The expense of paying the transplant bills and ongoing medical costs is one issue. Our biggest challenge is the dramatic drop in household income combined with the expenses (because of illness I haven’t worked in more than two years). Do the math and it becomes starkly evident: We’re in financial hell.

We’re the lucky ones. Because we had good medical insurance I was able to have my transplant and we’re keeping afloat (well, we haven’t gone under yet!). I often wonder about transplant candidates who have little or no health insurance – what about them? I volunteer with a woman whose brother-in-law died of liver disease because he didn’t meet the financial criteria at his transplant center. Hearing about this shook me to my core. There but for the grace of God go I. And my cousin in Athens, Georgia, sent me a link to a community fundraiser for a 12-year-old girl who needs a liver transplant. (Visit http://www.athensindiecraftstravaganzaa.com/ for information or to make a donation for Olivia King’s transplant.)

Is it ethical to deny medical services to people who can’t pay? Is it fair to expect hospitals to absorb these expenses? I struggle with these questions and of course, I’m biased on the matter. What do you think? Please leave a comment.

Surviving Hepatitis C and a Liver Transplant: Learn the Lingo

Information is what every patient needs when faced with illness or injury. No matter how much time you invest educating yourself about your condition, you'll never get enough or have too much info.

Let's face it: Medical professionals not only know lots of things we don't know, they communicate using a language that's arcane and confusing. For this reason, one of the first things patients should do is become familiar with the medical jargon specific to their illness.

Over the past couple of years I've expanded my vocabulary to include liver disease terminology, which was necessary so I could follow my doctors' conversations and instructions. Here are a few new words in my vocabulary that describe symptoms and conditions of liver disease (definitions are from hepatitis-central.com):

* Ascites - Accumulation of serous fluid in the peritoneal cavity, usually encountered wtih portal hypertension or heart failure. Uncomfortable accumulation of fluid causing abdominal swelling. This occurs when the blood flow through the liver is obstructed. (I referred to the swelling in my belly as my "liver baby" because I looked very pregnant.)

* Varices (Esophageal and Gastric) - Submucosal varices of the lower esophagus or gastric fundus mucosa are frequently caused by the development of portal collateral vessels as a result of portal hypertension. Abnormally dilated/stretched veins. Dilated veins; these can rupture, leading to massive bleeding. (These are swollen veins in the esophagus that could easily rupture and cause a patient to bleed to death; I managed to avoid this complication.)

* Encephalopathy - A variety of brain function abnormalities possibly caused by circulating gut-derived brain-toxic proteins not cleared by a dysfunctional liver; symptoms can include insomnia, confusion, disorientation. (I had a touch of this and it made me forgetful and sleepy - I referred to it as "liver dementia.")

Searching for these definitions often required looking up definitions of even more terms (e.g., "portal collateral vessels" in the definition of varices, above). Ultimately I was able to boil these terms down to the point that I understood what they were and more importantly, understood what they meant in terms of my illness. My vocabulary lessons continue to this day.

Hepatitis-central.com has an extensive glossary of liver and Hepatitis C terms. If you know of other good resources that define medical words in layman's terms, please leave a comment and tell us about it. After all, you can never have too much information.

Photo credit: Thad Zajdowicz

Vote!

Voting is a privilege, a right and a responsibility. I've always voted and this year more than ever, I appreciate having the chance to do so. You see, without my liver transplant I wouldn't be alive today. So being able to vote is more than my civic duty, it's a delight - it's just one of the many ways I get to celebrate life. And voting is important!

I live in Florida and if there's one thing Floridians have learned (the hard way), it's that every vote counts. Don't take this opportunity for granted. I urge other Americans to join me at the polls today. Let's make our voices heard. Go celebrate life.

Another Post-Transplant Email: After One Week, Still in Intensive Care

Monday, December 11, 2006 2:42 p.m. (sent by Gene)

Dear friends,

I’m writing this note, appropriately enough, camped out in front of a sculpture called the “Wings of Hope” in the lobby of the hospital. A few art pieces like this are scattered throughout the building, commissioned by an Arts in Medicine program. It’s a nice touch that spruces up an otherwise somber environment.

I wish I had better news to report, but Jay’s condition hasn’t changed much since I last wrote all of you. Thank goodness, she’s not trending the wrong way, but progress has been slow and incremental at best. Nearly every morning, the doctors greet me with “Jay’s hanging in there. She’s doing OK, but…“ It’s this pause that I can do without. Usually it’s nothing alarming, but some indicator always seems to be a bit out of range, i.e. low platelet count, a slight fever, too much of this, not enough of that. I’m doing my best to digest all this info, but it can be an overload at times. I’m just proud that I can remember all of the doctors’ names… I’ve dealt with 8 of them so far; 3 surgeons, 3 critical care doctors, 1 hematologist and 1 liver specialist.

Jay is still in intensive care, primarily because she’s having issues breathing. The doctors assure me that Jay’s lungs aren’t damaged; they say her prolonged illness, combined with the trauma of major surgery, weakened her more than anyone could have imagined. Jay has been on a ventilator continuously for almost a week; they want to remove this ASAP because having a huge breathing tube down your throat isn’t very sterile. As an alternative, the doctors are considering performing a tracheotomy. It should enable Jay to breathe a little easier and minimize the chance of infection. But it’s a surgical procedure… and the doctors would rather spare Jay another trip to the operating room if at all possible. The good news: If the “trach” is successful, Jay likely will be moved out of ICU and on to an intermediate care floor. I’m guessing the trach will be done sometime this week.

Meanwhile, Jay appears to be resting relatively pain-free. Good meds, I suppose. Yesterday, she was very alert and waved to me when she spotted me from across the ICU. As I approached her bedside, Jay waggled the ring finger of her left hand, gesturing for her wedding band. I’ve been carrying it around in my backpack and when I showed it to her, Jay smiled and gave me a thumbs-up sign. I told her everything all of her friends and family are doing for her, for our kids and for me. She smiled again and nodded. Jay may not be able to talk, but trust me, she understands your love.

Thank you again for all your prayers and good wishes. God bless…

Gene

A New Hepatitis C Treatment Could Save My Life

I have hepatitis C. It's a disease without a cure, plagues four million Americans and is the leading cause of liver transplants in the US and Europe. I have type A, which is the most common genotype in the US and most difficult to treat.

My transplant center has a highly regarded hep C research and treatment clinic, which benefits me because hep C doesn't go away after a transplant. The virus spreads throughout your body and surgery removes only the organ damaged by the virus; it doesn't eradicate hep C from your body. For transplant patients like me who have hep C, the hope is that the virus will kick-back and maintain a low profile for a few years after surgery, before starting to scar (called fibrosis, the precursor to cirrhosis) the new liver.

Sadly, my virus is literally and figuratively "Type A." (Get it? Ha ha, well, uh I guess it's really not that funny.) Fibrosis grade 2 to 3 was discovered in my liver four months after my transplant and not long after that, I began the standard treatment (pegulated interferon and ribavirin). Even more sadly, 12 weeks of shots, pills and feeling like crap later, we discovered that treatment didn't clear the virus from my system.

[On the upside, my most recent biopsy (June 2008) showed that my liver actually looked better than it did 14 months earlier with the fibrosis only at grade 1 to 2.]

Nonetheless, I know that my new liver is vulnerable and I'm concerned because my transplant center doesn't perform second transplants on patients whose livers are damaged by cirrhosis (regardless of whether cirrhosis was caused by hep C, alcoholism or another condition). The chief liver transplant surgeon told us this prior to my surgery but at the time, it didn't register. Back then I was focused the countless details involved with my first transplant and a second transplant just didn't seem to warrant consideration; now, it's top of mind.

Because of my susceptibility I try to keep informed about the promising new drugs currently in development, one of which was featured in a story posted yesterday on reuters.com. Schering-Plough released phase II data about its clinical trials for boceprevir at the annual meeting of the American Association for the Study of Liver Diseases. Results indicate that boceprevir used in combination with the standard treatment is statistically more effective in clearing the hep C virus. Additional improvement is noted if patients start standard treatment before boceprevir is introduced.

You go, Schering-Plough and Vertex Pharmaceuticals and all you other drug companies and scientists who work hard to find new treatments and/or a cure for hep C! Along with 170 million other people around the world who are infected with hep C, I give you thanks and, if I could, I'd give each of you a gigantic hug. You’re my heroes.

I'm curious to get your thoughts about clinical trials and funding for medical research and, in particular, drug development. People have such varied opinions about who pays for drug research and whether government funds should be spent on these endeavors.

Personally, I wish we could take even 10 percent of the money spent on the 2008 presidential election and put it toward something positive and useful, like medical research.

A "Difficult" Patient

At times, Gene (my husband) has accused me of being "difficult." Well, I guess I can be. In my defense, it's not that I'm high maintenance. But I'm willing to share a contrary opinion, second-guess other people and try to fix things if they are broken. My husband likes to play by the rules; I think rules are a starting point. (As the saying goes, opposites attract.)

So you might have deducted that I'm not always an ideal patient. Gene says so - such as the three times I pulled out my nasal tube when I was in ICU (I don't remember doing this but it must have been pretty uncomfortable and, well, good for me). Or the times, also in ICU, when I tried to loosen or remove my hand restraints by biting them (I actually remember doing this and I have scars to prove it).

Today I discovered that I'm probably not the worst patient on the planet. (Hmmm - worst doesn't seem quite right - perhaps assertive or noncompliant are better terms.) Anyhoo, actor Evan Handler, who played Charlotte's second husband, Harry Goldenblatt, on Sex and the City, is a staunchly assertive patient who refined his expertise while being treated for leukemia in the 1980s. Handler has written two books about his experiences. If my husband thought I was difficult, he should read "Being a Bad Patient Can Save Your Life," Handler's interview with CNN Medical Correspondent Elizabeth Cohen.

The medical profession is comprised of people who, like all human beings, sometimes make mistakes. Like Handler, I experienced some obvious errors while in the hospital - and assertive action was imperative. If you're uncertain or uncomfortable, it's up to you or your advocate to ask questions, disagree, change doctors, insist on getting the information you need.

Think of it this way: By being a strong self-advocate now, you'll be prepared to be a strong self-advocate in three months from now when you start battling with your insurance company. And boy, will you need some good skills then!

Nurses are Angels on Earth - Treat them Well

In my experience, the most important person in the power hierarchy of an organization isn't the person at the top, but the people with un-glorified roles who know what's going on and interact day-in and day-out with the "customer." It's not the company CEO, it's the CEO's assistant. And at a hospital it's not the doctors, it's the nurses and staff.

Think about it - you have surgery and your doc visits once a day to check your breathing, look under the bandage and ask how you feel. Four or five minutes later he or she is out the door.

The nurses - that's a whole different story. They dispense drugs, including painkillers; make sure you have food, something to drink, a clean gown; and hold your hair back when you vomit. Nurses also suction your trach tube when it's clogged with phlegm and share tips about how to keep your IV line from becoming tangled. Nurses are angels on Earth.

Other deserving staff including nursing assistants (they also hold your hair when you vomit), nutrition employees who deliver your meals (which are often the highlight of the day) and maintenance workers who mop up all that stuff you expel onto the floor.

If your hospital stay extends for more than two or three days, these people become very important in your world and they should be treated well and with respect. During my transplant-related hospital stays, I took candy for the nurses and staff (and docs, too - after all, they saved my life). I'm not talking cheap hard candy - it was mini chocolate bars for those folks. When the supply ran low my husband bought more.

I also take candy to family and friends who are hospitalized, for their nurses. I want them to get the best possible care, so I treat their nurses well.

I'm interested in other opinions on this topic, especially from nurses and hospital staff. What can patients (and their family and friends) do to express gratitude? And if you've been a patient, what have you experienced? Please tell us by leaving a comment.

Water, Water Everywhere and Nobody Will Give Me One Measly Drop

I'm not kidding when I tell you this: I have NEVER been as thirsty in my life as I was in the Surgical Intensive Care Unit after my transplant operation.

For what seemed like an eternity I wasn't allowed a sip of water, a sliver of ice, nothing - except for some laughably inadequate miniature, flavored sponges that had been dipped in water and placed in my mouth so the moisture could re-hydrate the Sahara-like landscape that used to be my tongue and gums. Talk about your "drop of water in the desert!" The sponges were pitifully insufficient and I was desperately miserable.

I wasn't able to consume any liquids because keeping my stomach empty would help reduce chances of nausea (and vomiting after major surgery would be spectacular painful and unpleasant). Additionally, if I experienced complications that required more surgery, I had to be ready to go at a moment's notice and surgery must be done on an empty stomach. [As it turned out, I went back to surgery the day after my transplant AND again the day after that.]

My poor husband, to whom I pleaded for water or ice, was alarmed when he tried the suck-on-a-sponge technique. Instructed by the nurse to use the sponge to swab the inside of my mouth, Gene jumped when I clamped down on it and "sucked it dry in seconds," before he could attempt to swab. I couldn't help it - I was just so damn thirsty! What made me cry, though, was when I begged a dear friend - someone whom I could always count on, a partner in crime, no less - to bring me ginger ale and she didn't, telling me that it was extremely dangerous and all that other doctor-like blather. If she wasn't going to rescue me, I knew no one would.

Since that time, I've often wondered if there weren't some product, some better way, to relieve the dry mouth and thirst of post-op patients like me. Several months after the transplant my dentist introduced me to Biotene products to help offset the dry mouth I experienced as a side-effect of medication and they worked pretty well. And recently, physicians allowed us to bring a similar product (Oasis) to the hospital to give to my Mom after she had surgery (she wasn't in ICU, however). Neither product requires a prescription and can be purchased at a drug store or pharmacy.

So are these kinds of products being used in ICU? Can they be used? While digging around for data about oral moisturizers I learned that oral health is especially important for critically ill patients and people with breathing tubes (such as moi) because bacteria that grows in your mouth can dislodge and potentially cause infection. According to Dr. John R. Ashford Ph.D., CCC-SP of Tennessee State University and Vanderbilt University School of Medicine:

Intensive care nursing is now using toothbrushes with suction tubes attached to catch secretions while brushing and to help prevent dislodging and swallowing of bacteria by patients. The results have been very good. Some other findings have been that the green sponges often used in oral care are essentially worthless and may do more harm than good. Likewise, lemon-glycerin swabs. The glycerin swabs alone appear to moisten the mouth and do not clean it, but the lemon additive may, in fact, act to dry out the mucosa of the mouth - the opposite of what is desired.

SpeechPathology.com dated 1/1/2007

I honestly don't recall what my ICU nurses used. Yet I don't recall my doc telling me anything about this. But I'll be certain to raise the question if I'm ever in that position again.

And so, as I told my family and friends after this experience, and with apologies to Scarlett O'Hara, "I'll never go thirsty again." And you can take that to the bank!

While in Intensive Care, Things Start to Get "Interesting"

More of the emails to family and friends, beginning the day after my transplant:

Monday, Dec. 4, 9:45 a.m. (sent by Bob, our friend)

Update from the hospital. The good news is that Jay is off the oxygen mask. The bad news is that she is experience a lot of pain. Not surprising after six people to a Texas two-step in your guts for six hours. But they've given Jay the "good drugs" and she is more comfortable. Gene is still with her. Jay is expected to be in the hospital for another 10 days to two weeks or until the liver is functioning fully. Visitors are pretty limited because of the fear of infection, fatigue and about a million other reasons. Gene has also requested prayers for the anonymous donor of the really healthy liver. We'll never know who the person is, but he/she is Jay's angel.

In answer to several of you, Jay's good friend Regina has flown in from New York and is staying with Jay's kids as long as necessary. Feel free to call her at the house and offer any assistance. From here on out, assume that no news is good news. But Gene has promised to stay in touch and I'll send something out every couple of days until Jay gets home.


Wednesday, Dec. 6 - 4:27 p.m. (sent by Gene)

Dear friends and family,

I know many of you have received emails from Bob and others updating you on Jay's condition, but I personally wanted to send you all a note to thank you for your love and support. Happy [the deacon from our church] mentioned to me how she was utterly amazed at all the love surrounding Jay, and I couldn't agree more. I have never felt more loved and blessed in my entire life, and you cannot possibly imagine how thankful I am. Tears of joy and gratefulness are washing my face as I write this...

Let me move on to what you all want to know... As of 3:00 p.m. today, Jay was in stable condition and resting comfortably in the surgical intensive care unit. By far, she's having her best day yet, and trust me, that is welcome news. Without bombarding you with details, we've had our share of difficulties since her transplant operation, which concluded early Sun. morning. (She was in the operating room approximately 5 and 1/2 hours.) After a textbook procedure we hit a few bumps, everything from her blood having difficulty clotting to negative side effects from her anti-rejection medicine. While I wouldn't call these problems routine, they do occur with some frequency in liver transplant cases. So, for two days, the doctors struggle to address these issues, but they finally have managed to get everything under control. All of Jay's vital signs are good, and all of her major organs - including her new liver - are functioning well. The only concern for the moment, and the doctors assure me it is a minor one, is her breathing; she's retaining some fluid in her lungs which is normal after an operation, especially for someone in Jay's weakened condition. As a result, she's breathing with the aid of a ventilator. The good news here is that she is heavily sedated and on pain meds to minimize the discomfort of her breathing tube. If she continues to progress, the breathing tube may be removed as early as Thursday.

All in all, it's been a roller-coaster of a ride. By far, the toughest moment for me was when I saw Jay the evening following her surgery. I expected to find her sound asleep, but to my dismay she was in considerable pain and alert. Crying, she pleaded to me, "I can't take this. Please take me home." It was awful. (With the help of the nurses, we were able to calm her down and she drifted off to sleep before I left.) But there have been some pretty humorous moments, too. One morning, the nurses told me, Jay was awake but pretty loopy because of all her drugs. With her usual charm, Jay greeted anyone who came through the ICU door with a cheery, "If you're looking for Jay, I'm over here!"

Many of you have asked about sending flowers or cards... while I certainly appreciate the gesture, I ask that you hold off a few more days or send them directly to my home. Jay can't receive anything in the ICU and it'll be a couple more days, at least, before she gets moved to a regular floor. Barring complications, I'm expecting Jay will be in the hospital a solid two weeks, perhaps even longer. Again, this is nothing unusual; just par for the course for these procedures.

That's all I have for now. I'll try to send some updates every couple of days or have someone relay news to you. If you want to ask me a specific question or send a message to Jay, feel free to drop me an email. I'll be checking regularly. In the meanwhile, thank you again for all your prayers, the food, the support and the care you're providing the kids. I know the latter would mean the most to Jay, and it certainly gives me peace-of-mind to focus all of my energies on Jay.

Thank God for all of you.

My love and gratitude,

Gene

We Get THE CALL - My New Liver Awaits

Saturday, December 2, 2006 we got THE CALL - a liver was waiting for me. We informed our family and friends "group" via emails from our close friend, Bob, who served as interim communications chief while Gene was out-of-pocket. Here are those emails:

Saturday, Dec. 2 - 3:16 p.m.

Hello everyone. Bob here. Gene asked me to contact you. A compatible liver donor has been identified and Jay is currently enroute to the hospital by helicopter [note: due to stormy weather, I was actually taken via ambulance]. Jay's transplant surgery is schedule to begin this evening at 8 p.m. and is expected to take six hours. Gene, my wife Carolyn and Happy [a deacon from our church and dear friend] are driving to the hospital now. Please keep them all in your prayers tonight. I will send out updated information as it's relayed to me.


Sunday, Dec. 3 - 7:35 a.m.

Good morning, everyone. Bob again. The news from the hospital could not be better. Jay's surgery did not start until 1 a.m. and took about 5 1/2 hours. The doctors told Gene that by the time they wheeled Jay out of the OR, the liver was already functioning. It was a textbook procedure. (The fact that the docs were able to watch their favorite football team win a conference championship game probably helped also!) Jay's Mom and sister are now at the hospital. I'll try to get info about when calls and visits to Jay can start and send out another email.

Emailing Friends and Family

My family and I are blessed with the most loving, caring, kind and generous group of friends and relatives in the world. Without them, we couldn't have survived our struggle. To keep the gang informed, we sent emails before, during and after my transplant. My husband, Gene – bless him – was Chief Communicator during my prolonged hospital stay. And my sister, Dene, printed out the emails and gave them to me once I was home, which helped me piece together what happened during and after my transplant. Here is the first of the transplant emails, which I sent to our friends Dec. 1, 2006 – less than 24 hours before we received THE CALL.

Dear Family and Friends - It's official! Weds., Nov. 29, my name was placed on the liver transplant list. After months of screens and tests, meetings, doctors' appointments, medicine, red tape, side effects and lots of WAITING, I'm excited and anxious to finally reach this milestone.

Along with this good news, we learned that my blood work results show that my liver functions are deteriorating at a pretty rapid pace. Here's the scoop - a MELD (Model for End-stage Liver Disease) score is used to prioritize transplant patients; three components of a blood test are used to calculate the score. For the past five months or so my MELD score has been 20 (which is fairly elevated); but in the past four weeks the score has jumped to 24. While this is disconcerting, it significantly increases my priority for transplant.

So... it looks like Santa will bring me the gift I want for Christmas: A new liver! At least, it is my hope that the operation will occur very soon. Gene will become the official communicator for a while and will keep you posted about the transplant.

Thanks so much for all of your good wishes and prayers, which I can use now more than ever. And thanks also for spreading the word about becoming an organ donor and donating blood. It surely means a lot to me and other people who need organs, blood, etc.

Have a great holiday season! We'll be in touch. xo - Jay & Gene

The Transplant Waiting List

Waiting for surgery that will save your life. Unsure when THE CALL will come. Realizing that someone must die in order for you to survive. This part of the transplant process is hell.

Not knowing drives me nuts. I’d rather have too much information than too little. Yet most of the waiting process for transplants is, literally, in God’s hands. The docs might know a little something but they aren't very forthcoming.

I don't know how other transplant centers share information about their transplant waiting lists, but my center didn't disclose details about how many people were on its list, how sick they were, where I ranked, etc. So in the absence of information, I obsessed and searched the Internet for answers.

One thing I learned is that transplant priority is now determined by how ill a patient is, not by how long he or she has been on the waiting list. The protocol for ranking liver transplant patients changed in 2002 when the MELD score (Model for End-stage Liver Disease) became part of the calculation to determine priority among candidates. In general, MELD uses blood test results to determine the three-month mortality rate for each person awaiting liver transplant - the higher the score, the more ill the patient. (More about MELD scores another day).

I was able to fairly accurately determine my MELD score by using an online MELD calculator. Knowing my score, however, didn't answer my questions. But I got lucky.

During one of my Internet searches I stumbled upon a tremendous resource, the key to my questions, the portal to liver transplant waiting lists, aka: http://www.optn.org/ (the website for the Organ Procurement and Transplantation Network). Thirty minutes of experimenting and one advanced data report later, I had my answer: I was able to determine the number of liver transplant patients on the waiting list at my center, broken in detail by gender, race, age range, blood type, disease and more. Updated weekly, the reports kept me informed about other people on the waiting list and allowed me to better anticipate how long my wait might be once I was officially added. Simply knowing this info helped me manage my expectations and put my mind a bit more at ease.

FYI for patients awaiting other types of transplants: The website includes info for all types of organ transplants, not just liver, and includes centers throughout the US. Access is free and available to anyone.

Hello and welcome!

Why add another site to the blog universe?

Because I'm looking for answers and can't find them. I underwent a liver transplant nearly two years ago and both before and after, I found it far too difficult to find the information I needed or wanted. This blog is about what doctors didn't tell me.

For others seeking answers to questions like mine, I hope this blog can help. There is so much the docs can't or won't share - but I can share and I'm happy to do so.

And to those undergoing a similar journey, God bless you and the people who love and care for you. I wish you all the best. But just in case, buckle up - it can be an awfully bumpy ride.