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

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 "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!

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!