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.

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

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.