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.