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08/11/02 |
        
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Breaking NewsTeri has a new liver and a new life! Margaret's liver is working perfectly! The surgeries happened July 12th 2002 at UCSF Medical Center in San Francisco. Thank you very much for all of your prayers, encouragement and support! Below gives all of the details that Margaret can remember:
The Transplant! Well, there is a lot I don’t remember due to high amounts of morphine and vicodin. Thanks to Catherine, Kai and everyone for filling in the blanks. (Even though I am certain I would have been better off not knowing that immediately after surgery, I spoke with a French accent and asked if I “looked as cute as Rachael did when she had her baby on Friends”. Good to know how truly deep my waters run when it comes right down to it.) Timeline: 6-10-02 Transplant Education Class: Margaret, Catherine, Teri & Gary attend class. (Couldn’t help but feel like we were cramming the night before the big exam) Dorrie Kamp the Social Worker was really a great leader for this class. She was very supportive and insightful. It was a great opportunity to meet with other families going through similar experiences. It was heartbreaking and scary to see so many ill people suffering like Teri. I was grateful that our family’s long wait was so close to ending. After the class Dorrie gave us a tour of the hospital’s ICU so it would not be so scary or surprising. Exercise Study: Margaret & Catherine met with Dr. Trish Painter to participate in an exercise study which will determine how Living Donor’s recover following surgery. Trish ended up being very helpful, thoughtful and supportive throughout Margaret’s recovery. Her phone calls, visits, and hand-holding were very much appreciated!
Exercise Study
6-11-02 The troops gathered at Margaret & Kai’s to prepare for the big day! A lot of final details had to be arranged. 4pm Margaret, Teri, Catherine & Gary Check-in at UCSF hospital. We had to wait a very very long time for our rooms to become available. Dorrie the Social Worker swooped in and rescued us from the admitting office to the private waiting room on the transplant floor. Donna G. and Grandparents arrived to keep us company and offer support. The anesthesiologist came and interviewed Margaret & Teri to prepare for surgery. Teri’s Surgeon Dr. John Robert’s, and Margaret’s Surgeon Dr. Nancy Acher, came by the waiting room to meet with us and answer last minute questions. Dr. Ascher was terrific! I think the Grandparents were somewhat shocked by her directness, and rapid fire questions. (Personally, I really appreciated her no-nonsense attitude.) The surgeons left us with a feeling of confidence in their expertise and abilities. Finally at 8:30 pm Margaret & Teri’s rooms became available. Unfortunately, Margaret did not have a private room, so nobody was allowed to spend the night with her. Kai stayed as late as he could, and Catherine slept in Teri’s room, while poor Gary didn’t sleep a wink. Margaret & Teri got IV’s and fluids started in preparation. 6-12-02 The Big Day!!! 6am pre-op: Margaret & Teri are taken to the Pre-operative area, where they meet with the anesthesiologist. (That is pretty much the last thing I remembered at this point.)
Margaret went in to surgery first, and her surgery lasted until about 2:30 pm. A funny thing: Catherine was surprised to meet Dr. Ascher drinking a soda at the elevator, and frantically asked how the surgeries were going. Dr. Ascher said they were having a lunch break, and that everything was going fine. A short time later, Dr. Ascher briefed the family in the waiting room in detail. Margaret’s liver structure was more complicated than usual due to extra veins and bile ducts. So she needed a pint of the blood she banked. Also, her ribcage was smaller than expected, so the team had to use some ribcage expander thing that made her very sore. (If anybody wants to see it, Dr. Ascher gave Margaret a copy of the Operative Report that details everything.) Teri’s surgery went very well too! Teri was so amazing that she had her breathing tube removed almost immediately after surgery!
She was also out of the ICU really fast as well! It was so incredible to see the difference in Teri! Her skin was pink and her eyes were bright and clear. The Recovery Margaret’s first words after “How is Mom” was “It fuckin’ hurts”. People can explain pain to a person in minute detail, but nothing can truly prepare one for it. Thank goodness for the magic morphine button. Margaret had a fantasy of spending her time in the hospital reading, writing, watching TV, chatting with visitors etc. Yeah right. Not only did she have the attention span of a two-year-old, but she actually spent her time being prodded by blood sucking vampires every hour, having her temperature and blood pressure taken, having her catheter removed and re-inserted, being asked every five minutes if she had “passed gas” yet, being told to pee into a hat, and having her bile tube stripped—the most painful thing ever! Hospitals are not a great place to be when you are trying to rest. There are strange noises and smells and the food is AWFULL! It is amazing that surgeons can remove 60% of a person’s liver and sew it into another person, but can’t understand how to provide decent food. Catherine was a saint though and snuck in fresh fruit and yummy healthy food from Whole Foods. (It was so important to have a support person spending the night too. It was hard not to be able to do anything for ones self, having a familiar person there to get water, and help was great.) Dr. Ascher, Dorrie, Cherie, Trish and other members of the Transplant team were frequent visitors.
Teri’s first couple of days was rough, but she pulled through great! It was a couple of days before Margaret & Teri could see each other. Once Teri came down from the ICU, Margaret was able to walk to her room and visit. Never was there a happier reunion!
After four days Margaret wanted to GO HOME! The transplant team finally agreed, and Margaret was released Wednesday July 17th. Once at home surrounded by familiar people and things Margaret’s recovery progressed rapidly. Catherine earned a new nickname due to her endless tasks of caring for Margaret, laundry, dishes and cooking. Margaret’s dearest friend Donna came up from Nipomo and provided Catherine with a much needed rest. Kai continued to work full-time, and had the important job of emptying and monitoring Margaret’s Jackson-Pratt tube. (aka the Bile Bag). Margaret had to wear the tube for another week unfortunately. Teri meanwhile stayed another week at the hospital. They had to fine tune her gazillion anti-rejection and other medications. Teri received insulin shots as a side effect of some of the meds. Teri also received infusions for the Hepatitis C clinical trial that she is participating in. (We are so grateful and hopeful for this treatment, and are excited at the prospect of protecting her new liver from the ravages of this horrible disease.) Gary was finally able to bring Teri to their new home for the next month or so – The Pacific Inn in Redwood City. They needed to stay close to the hospital in order for Teri to get her labs, attend clinic, and receive infusions. A couple of weeks after she was released, Teri had to go back into surgery to repair a leakage in her incision. This meant opening the incision again, and more staples. Ugh! It all turned out well, and Teri is not leaking any more, just really sore. Update! Teri & Gary were given the ok to GO HOME! Teri still has her incision stapled, and will need a lot of help at home, but at least she is out of the hotel! Teri will have to return to San Francisco every other Friday for the next few months for clinic and infusions. It is fast approaching one month since the surgeries. We are all so grateful that everything has gone so amazingly well. Every sunrise is a second chance, and not a day goes by that we don’t acknowledge the huge gift that the Doctors, nurses, staff, and our family and friends have given to Teri. Oh yeah, and Margaret too of course! The Miracle Workers We learned a few things about miracles from this experience. We learned that miracles don’t happen by themselves. It takes a lot of people sacrificing and working very hard to make a miracle happen. We greatly appreciate all of the cards, flowers and phone calls. It really made a difference! We would also like to thank and acknowledge the following extraordinary people for their extra special help. We could not have done this without them. These are just some of the miracle workers that have been so gracious:
The Masters If you ever need a Liver transplant, have it done at UCSF. The team there is beyond compare. Not only were the surgeons, nurses and staff masters at their craft, but they were kind, supportive, attentive, funny, professional, direct and dedicated as well.
Previous Breaking News Items: 5/28/02 WE DID IT!!! Margaret was approved as a Living Donor for Teri today! Thank you very much for all of your encouragement, prayers, and support! I am in cloud nine right now, so forgive me if I am rattling on . . . Margaret & Kai met with Dr. Roberts. He explained that Margaret is healthy enough to be a Donor for Teri. (And also an astronaut at NASA . . .J/K!) Margaret's Liver has an extra vein, and an extra bile duct, which means a slightly trickier surgery for Teri. The surgeons will have to take a piece of Teri's intestine to close-up the extra bile duct. The surgeries could happen as soon as Mid-July! Teri and Gary will be coming to San Francisco to Meet with Dr. Davern & Dr. Roberts on July 1st & 2nd. Margaret will have to donate about 1 unit of blood per week in the month before the surgery. While at the hospital, Margaret & Kai watched a fascinating video documentary of UCSF Living Donor Transplants. It was produced by Discovery Health, entitled "Cutting Edge". It was episode #CEO2065. We are trying to get a copy, so let me know if you are interested in seeing it!
5/14/02 Margaret had her Living Donor work-up at UCSF We will find out May 28th if she is a suitable donor. Teri is almost done with all of her testing too. We are all so grateful for your prayers and support! Words of thanks are not enough to express our gratitude! You all are so crucial to the success of our journey! Thank you very much!!! For those that are interested below are an outline of the tests we had:
Margaret: Blood Work: ABO type etc. (They took a lot of blood! I was worried I might not have any left!) Chest X-Ray EKG (They found a slight “typical normal abnormality”, they said my heart sometimes “misfires”, but it was nothing I should be concerned about.) ABG/Spirometry Clinic (I had to blow into a tube to test my ling function) Abdominal CAT Scan MRCP (Like an MRI) Abdominal Ultrasound Social Worker Consultation (They wanted to know what kind of support system we have for the surgeries, and to make sure I was making this decision on my own.) Internist History & Physical (He is my “devils’ advocate”, he wanted to be sure I understand the risks involved etc.)
Teri: Arterial Blood Gas Chest X-Ray EKG Hepatoma Screening PAP/MAM Pulmonary Function Echocardiogram Persantine Thallium scan Vaccinations Lab tests/blood work
4/24/02 UCSF has accepted Teri into
their transplant program!!!
There is still some paperwork, and a few more tests that need to be performed yet. I will update you once we know more details. We really don’t know about a time frame yet. While we are excited, I think Mom (Teri) is having mixed emotions. Like all of us, she is happy, and scared and worried all at the same time. It has been a big emotional roller-coaster for all of us, but there is light at the end of the tunnel! The next step is for Margaret to undergo the evaluation process, which involves lots of tests! Teri needs to repeat some tests as well. I will update you when we know more
4/9/02 Dr. Roberts is having Teri apply for transfer from California Pacific Medical Center, to UCSF Medical Center. CPMC is not ready to perform Living Donor Transplants in time for Teri to benefit. UCSF is a great hospital, I have detailed Teri’s “Phase I” evaluation below:
Well, in a nutshell, it was terrific! The transplant team was patient, thoughtful, caring, funny, engaging, professional, listened,--everything we could hope for!
It was a very hectic and emotional few days to say the least. Mom and Gary flew in a little late, so I had to hustle to get them to the transplant center in time for Mom's ultrasound at 8:30. We made it from San Jose to San Francisco during commute hours in 40 minutes! (I could literally see the gray hairs sprouting on Gary.) Once at the hospital, Mom had her ultrasound, then we had a consultation with the Hepatologist Dr. Davern. He was really informative. He explained complex medical processes in a way we could all understand clearly. Next we met with the nurse coordinator, Cherie Bremer-Kamp. She is an amazing woman, with an amazing history. She was able to overcome a devastating accident that left her husband dead, and herself disabled. She turned her tragedy into a lifelong devotion to helping the less fortunate. (For those of you who have access to a computer, follow this link for her story: http://kangchenjunga.org/history.html) Finally we met with the Social worker Dorrie Kamp. She was great! She really listened, and paid attention to our particular situation. She was very engaging and supportive. She asked really penetrating questions, that made us think. She also gave us several helpful suggestions on how family and friends can be supportive after the surgeries. She suggested we have a person as the designated "news broadcaster". Dorrie said Gary and Catherine will be exhausted, and it would be emotionally draining for them to share the details of the surgeries repeatedly. She also suggested we have a couple of people on standby to relieve Gary and Catherine, so they can get away periodically. So many details to take care of!! Anyway here is the big question on all of your minds: What is the next step? Well, Mom will be formally presented and her case discussed next week at "Selection". This is a meeting of the nurse coordinator, the transplant surgeon, the hepatologist, the social worker and other members of the team. They will review her medical condition, and decide if she can be listed at UCSF. We should find out by the middle of next week if she can be listed there. I will update everyone the second we hear anything!
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Liver Transplant Recipients In The News
"The top American male alpine snowboarder,
Chris Klug (pronounced
KLOOG), had to overcome a serious liver ailment to qualify for the Salt
Lake Games. In July 2000, Klug lay on the operating table with his life in
the hands of a doctor. Klug, who suffered from the same liver disease that
killed former football great Walter Payton, needed a liver transplant to
save his life. The transplant did exactly that, and by the end of
the year, Klug was back on the World Cup circuit. After finishing
in the top three for the first time since the surgery in December at a
World Cup giant slalom in Canada, Klug won a World Cup race for the first
time since the transplant, taking a parallel giant slalom at Kronplatz,
Italy, on January 17, 2001."
Salt Lake update! In a comeback story of Olympic proportions, Chris Klug claimed bronze in the parallel giant slalom. He won his final heat of the day against Nicolas Huet of France, despite having to use duct tape to repair a boot buckle that broke on the first of their two races. Klug won the first heat by .15 seconds and won by a bigger margin in the second, which gave him his first Olympic medal. Moments after the race, Klug, a liver transplant survivor, scaled two retaining fences to share hugs with all his supporters.
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Upcoming Events
National Organ and Tissue Donor Awareness Week (NOTDAW) Every year in April the Donor Awareness Council helps to coordinate National Organ and Tissue Donor Awareness Week. This special week is a time when the country pauses to honor and thank the true miracle workers of modern medicine: organ and tissue donors and their families. Transplantation is a miracle not because it is a technological advancement or because it sweeps dying patients away from the brink of death. Rather, the miracle is in donors and their families and occurs in one simple word: "Yes."
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This site was last updated 08/11/02 |
Pre-Op
Teri on
her way to the ICU!
Teri's
Beautiful Pink Face!
Margaret's
First Walk!
Happy Reunion!