Dr Bingo
LIVER TRANSPLANT
http://ourworld.compuserve.com/homepages/DrBingo
If you have any questions about liver transplantation, feel free to contact me at my e-mail address anytime (DrBingo@compuserve.com).
- I had a rare liver disease for about 20 years called primary sclerosing cholangitis, which means that all my liver ducts were closing down. Current theory suggests that PSC is an auto-immune disease; that is, my immune system was attacking my own liver. Maybe 20 people in a million are diagnosed with PSC, so most doctors don't know how to treat it (the team at Baylor is an exception). I was diagnosed with PSC about ten years ago during gall bladder surgery. The surgeon didn't know what to do for me, so he left two tee-tubes in my chest for about a year. During this time he took periodic x-rays of the liver, hoping to document progression of the disease. Each time the radiologist injected the radio-opaque dye into my liver, I would sustain massive infections (sometimes pancreatitis), and have to be hospitalized. Finally, a sympathetic doctor referred me to Baylor in Dallas, where a duct dilation was performed. The tubes were removed a week later, and I was fine for about five years. Later the dilations had to be performed endoscopically and more frequently, until finally my elevated bilirubin level just wouldn't come down anymore. So I went on the waiting list in March 1995, and reached the top of the list in December. I was fairly sick by then, my skin and eyes were quite yellow, I was very tired or feeling like I had the flu every other day, and my blood chemistry was extremely out of whack. My liver and spleen were swollen to such a degree that I couldn't swallow much food; my stomach was more-or-less squeezed shut. And there were a lot of other nasty symptoms related to elevated mercaptan and ammonia levels. Luckily, I never developed irritable bowel disease, which usually accompanies PSC.
- I was transplanted on 1-2-96 at Baylor in Dallas, and returned home to recuperate six days later. The staples were removed from my incisions on 1-23-96, three weeks post transplant. The tubing you can see jutting from my abdomen is part of a "T-tube," and samples the bile flowing from the liver. It was removed on 2-6-96, or five weeks post transplant ( because the common-duct connection is a Roux-en-Y, the tee tube was removed early). I recovered more quickly than I did from my gall bladder surgery ten years ago. I lost about 15 pounds of muscle in both cases after the fluid build-up had dissipated, before I started to regain weight and rebuild muscle. I returned to my office only three weeks after the operation, but mostly worked from home telecommuting for the first eight weeks. My immune system was operating at perhaps 50 percent shortly after the transplant, and will rise to about 80 percent when the drug levels are gradually reduced over the next six months or so. At first I had to be careful not to expose myself to disease or stress, and I took a lot of prophy drugs to guard against pneumonia, TB, fungus, etc.
- The sooner you start walking, the sooner you get out of the hospital, but it's bizarre trying to walk with a dozen tubes hanging out of your body. After I left intensive care I had four tubes sticking out from my abdomen, two down my nose, one up into my bladder, and three into a neck vein, all attached to various bulbs and sacks and pumps. Pretty disgusting, and very awkward taking a bath. The first thing you want to do after getting rid of all the tubes is to shower in hot water for about 30 minutes (when your hair starts to grow back, the itch can push you to the edge). I guess the shaving nurse must have a sense of humor -- she got everything: armpits, chest, groin, thighs, buttocks, but she left a band of hair around one thigh like a garter. After four weeks, only about a half inch of hair had grown back, and it was still pretty thin. An immediate effect of high steroid levels is impairment of vision, which will go away after your steroid dose is reduced. Your eyesight may also suffer until you thoroughly clean out the protective grease that is placed over the eyes during surgery.
- Trying to sleep on your back can be difficult, especially because the trauma, steroids and prograf can make you hyper. Taking sleeping pills and pain medication will slow down your recovery, but sleep deprivation can be worse. I never could sleep on my back, and I discovered in the hospital that the reason was apnea (you stop breathing while asleep -- not good). After I was able to roll onto my side (and with the help of some Benadryl) sleep was much easier, but I didn't reach this milestone for about two weeks post-transplant. By the way, most transplant patients don't experience much pain. I only took one pain pill during recovery, and that was simply to make me drowsy so I could get to sleep quicker. Anxiety is probably a bigger issue than physical pain.
- You really need a resident helper and someone to spoil you and listen to your whining (that's my wife holding my hand, and my mother standing by her side). The nurses were very professional and obviously cared personally about their patients, but they can't stay with you 24 hours once you are out of intensive care. When you are recovering from major surgery, you feel helpless and really ornery at times. You tend to give the nurses a hard time. They are available 24 hours if you call, but the sooner you start to do things on your own, the sooner you will get out of the hospital, and it is a lot easier to recover at home. Your mental acuity will be suspect for a long time, and you really need a care-taker who makes sure you develop a strong habit of taking your drugs on a regular schedule. It would not surprise me to learn that many organ rejection episodes occur simply because a patient forgot to take his immuno-suppressants once too often. Because of the trauma of surgery and the high doses of drugs, you will be disoriented for several days or weeks. Even the simplest crossword puzzle may frustrate your best efforts. It takes time to recover your faculties. If you want to measure your progress, play a video game (Tetris, anyone?) and compare your daily score to your best pre-transplant score.
- Intensive care can be pretty strange. I don't remember much, and what I do remember is more like dream images -- strange interpretations of what actually went on. Also, my short-term memory was temporarily impaired, so that the half day before surgery is mostly gone. There are a few moments I remember about the preparation, but these were resurrected only after my wife recounted them to me. And the two days after intensive care were so bad, that it's as if I had been in some very dark and paranoid delusional place. I actually thought the doctors and nurses were trying to kill me. They do sometimes have to restrain a patient right after surgery if he becomes psychotic and tries to rip all the tubes out of his body. The trauma and drugs can produce some interesting side effects -- mood swings, enhanced sense of smell and hearing, confusion, hallucinations, etc. When you are not thinking straight, you may have difficulty coping with even the simplest situations. For example, you may not be able to find your room after taking a short walk down the hall. Things like this, and the fact that your liver enzyme levels may temporarily be higher than your pre-transplant numbers, can be depressing. You just have to trust your doctors and care-takers, and allow that everything is for the best. Anyway, with the encouragement of my nurses, friends, wife, parents, children, siblings and priest, and after recalling the time I spent with Steve Callahan on the island of Grenada (he wrote a book called Adrift about his survival on the open ocean after his boat sank), I knew I would be okay. Sometimes you just have to relax and let whatever happens happen.
- For the first month, my wife drove me to "clinic" at Baylor twice a week. I began driving myself at the fifth week, and after eight weeks I only had to attend once per week. After three months I returned to my regular doctor, and began a three week blood lab schedule. Clinic is where blood samples are drawn, vital signs are checked, and the post-transplant team evaluates my progress, adjusting drugs as needed or performing various minor surgical procedures. They like to keep the Prograf (FK506) level high for the first few weeks so long as there are no renal complications or debilitating side effects (headache, nausea, tremors, insomnia, etc). Eventually the whole-blood level of Prograf will be maintained between 5 and 10 ng/mL. There was some vascular damage to my right arm, which took about five weeks to repair itself. And the incision takes three or four months to heal to the point where you can do sit-ups. The skin below the cut may be numb for a year until the nerves grow back. But my liver enzyme lab numbers reached the normal range at three months, so I have no complaints. The quality of care, competence, intelligence and motivation of the staff at Baylor, as well as their positive attitude are all just extraordinary. In this day of "managed care" when the CEOs of the HMOs take home millions of dollars each year by squeezing the doctors and hospitals, it is rare to get such quality, personalized care as Baylor provides. Baylor has performed over 1100 liver transplants, and they clearly know what they are doing.
- I found out that most of the transplant staff have a personal dedication to their work and empathy with the patients because of their "having been there" at one time or another. For example, one of the respiratory therapists (looked a bit like Emmitt Smith) told me of the time he had fallen from a ladder in Sweden and suffered a concussion. He was taken unconscious to a hospital, and woke up not knowing where he was or how he got there. The poor guy fought and screamed for days, thinking that the tall, blonde, Swedish-speaking medical technicians were aliens who had abducted him and were performing unimaginable experiments. I know how he felt, and it made me feel better to know that I wasn't alone. We had a good laugh.
- So until I recovered fully, I was able to work from home on various software development projects, and support existing customers via E-mail. I would rather have been in Kuwait working on a seven-tower, 600 kw radio station project, but wasn't able to travel again for three months. And there are certain "third-world" countries with poor health standards and poor medical care, where it would not be wise for me to travel to ever. However, Kuwait has excellent facilities, and is not one of those countries. I returned to my regular office full-time at week eight, but am not yet ready to travel overseas. I spent two days in Las Vegas in order to give a talk at the National Association of Broadcasters convention in mid April, and was a bit concerned about being exposed to so many people in the airplanes to and from Vegas, and on the convention floor. American Airlines was very accomodating, and blocked some of the seats around me. And my blood labs looked pretty good a few days later, so I suffered no apparent ill effects. My platelet count is still a bit low, but sometimes it takes a long time for an enlarged spleen to return to a normal size. The platelets are available in case of trauma, but hiding in the spleen, so a low count in the case of splenomegaly is more-or-less cosmetic.
The long-term side effects of the medications can include kidney damage, so an annual glo-fil test is recommended. This is where they inject you with a trace of iodine or whatever, and periodically monitor the level of the iodine in your urine until it is reduced to a certain level. The flow rate ten months before transplant was 134 ml/min. The calculated surface area of my body is 1.73 square meters (this number is used to determine what your normal flow rate should be). The rate six weeks after transplant was 140 ml/min. The rate 53 weeks after transplant was 125 ml/min. The normal range is 95 to 130 ml/min, so I guess I'm doing fine so far.
- I wasn't sure that I would be around for our 24th wedding anniversary January 29, but here we are, Ruth and I, four weeks after the transplant. My family and I received a tremendous amount of support from friends, co-workers and a lot of new people we met along the way. We want you all to know that your thoughts, prayers and kindness helped more than you may know, and I really enjoyed the attention, too! Especially the home-cooking. I should get sick more often. But I'm really looking forward to Spring. Life is nice.
- If you or someone you know is planning on having a transplant, I highly recommend that you subscribe to the e-mail list at TRNSPLNT@WUVMD.WUSTL.EDU. I didn't find out about this support group until AFTER my transplant. Don't do it backwards like I did!
DID YOU KNOW THAT ONE DONOR CAN SAVE EIGHT LIVES?
REFERENCES
1) Thomas E. Starzl, The Puzzle People, Memoirs of a
Transplant Surgeon; 1992, University of Pittsburg Press.
2) Goran B. Klintmalm, Liver Transplantation, 1996,
Harcourt Brace & Co., $250.
3) To subcribe to e-mail from TRNSPLNT@WUVMD.WUSTL.EDU,
send the message SUBSCRIBE TRNSPLNT
to LISTSERV@WUVMD.WUSTL.EDU
4) To subscribe to e-mail from the PBC/PSC Support Group,
send the message SUBSCRIBE LIVERSUPPORT
to LISTSERV@LISTSERV.AOL.COM
PRESENT DAILY DRUG INTAKE:
Prograf (FK506, tacrolimus, streptomyces tsukubaensis) -- 2 mg twice, T cell suppression
Prednisolone -- 2.5 mg once, B cell suppression (discontinued)
Isoniazid (INH) -- 300 mg once, TB prophy (discontinued)
Bactrim (SMZ/TMP) -- 400/80 mg once, pneumonia prophy (discontinued)
Nystatin Oral -- 5 ml four times, fungus prophy (discontinued)
vitamin B6 -- 50 mg once (discontinued)
Synthroid -- 0.75 mg once, thyroid hormone replacement
Benadryl -- capsule, as needed for sleep or sinus
Riopan Plus / Alternagel -- 30 ml, as needed for heartburn
________________________________________________________
INITIAL SIDE EFFECTS:
mildly blurred vision
slight hand tremor
increased appetite
headaches
receding hairline
puffy face
night sweats
reflux, irritated esophagus
cold feet, muscle cramps
mood swings
confusion, aphasia
short-term memory loss
time dilation
________________________________________________________
ORAL DOSE VS TIME:
WEEK Prograf Prednisolone
1 16 mg 20 mg
2 12 20
3 10 15
4 8 12.5
5 8 12.5 (Nystatin discontinued)
6 8 10
8 8 7.5
12 8 5
16 6 5
20 4 5
24 4 2.5 (Bactrim discontinued)
26 4 2.5 (B6 discontinued)
30 4 0 (prednisolone discontinued)
44 4 0 (isoniazid discontinued)
________________________________________________________
BLOOD LABS 4 and 2 YEARS PRE-TRANSPLANT,
and 4, 8, 12, 16, 20, 30 WEEKS POST-TRANSPLANT
(asterisk indicates value out of normal range):
DATE 9/91 11/93 1/96 2/96 3/96 4/96 5/96 8/96
COUNTS
WBC 4.1* 4.0* 4.8 4.7 4.0* 4.3* 4.3* 4.6
RBC 4.4* 3.9* 3.9* 4.1* 4.2* 4.4* 4.4* 4.4*
HGB 13.2* 11.9* 12.3* 13.0* 13.1* 13.6 13.7 13.7
HCT 39.1* 34.6* 35.4* 36.6* 36.7* 37.5* 37.7* 37.3*
MCV 89.0 90.0 91.2 89.1 87.6 85.6 85.1 84.4
MCH 30.1 30.7 31.7 31.6 31.3 31.1 30.9 31.0
MCHC 33.9 34.2 34.7 35.5 35.7 36.3 36.3 36.7*
RDW 12.6 ? 15.1* 13.7 13.1 13.5 13.5 12.7
PLATELETS
COUNT 163 123* 91* 111* 112* 116* 114* 108*
MPV 6.0* ? 9.6 10.2 10.0 10.1 10.7 11.2
DIFFERENTIAL
LYMPHOCYTES 31 27 31 38 39 40 39 37
MONOCYTES 10* 12* 12* 5 12* 5 ? 12*
TOT POLYS ? ? 51 56 43* 52 55 49
METAMYELOS ? ? 1 ? 1 0 1 1
BANDS ? ? 3 3 1 0 0 1
SEGS ? ? 47 53 41 52 54 47
EOSINOPHILS 3 3 5 2 2 2 3 1
BASOPHILS 1 1 1 1 4* 1 0 1
CHEMISTRY
GLUCOSE 105 83 110 110 129 99 96 81
SODIUM 140 138 141 143 141 141 141 144
POTTASSIUM 4.0 4.0 4.5 4.3 4.2 4.3 4.2 4.3
CHLORIDE 105 107 102 105 102 102 103 106
CO2 26 ? 26 28 29 24 26 29
ANION GAP 9 ? 13 10 10 15 12 9
BUN 16 12 17 17 21* 18 20 18
CREATININE 1.4 0.8 0.9 0.9 1.0 1.0 0.9 0.9
BUN/CREAT 11* 15 19 20 21 18 22 20
CHOLESTEROL 207* 186 153 126 131 134 129 125
TRIGLICERIDES 66 40 87 99 93 71 113 83
CHEMISTRY PROFILE
URIC ACID 5.3 3.1* 3.8 4.9 5.1 5.1 6.0 5.6
PHOSPHORUS 3.8 4.0 3.8 3.8 3.9 3.6 3.4 3.2
CALCIUM 9.3 8.5 8.7 9.1 9.3 9.0 9.2 9.0
TOTAL PROTEIN 7.9 7.5 6.4 7.1 6.8 6.9 7.3 7.1
ALBUMIN 4.4 3.4* 3.6 4.0 4.0 4.0 4.1 4.0
GLOBULIN 3.4 4.1 2.8 3.1 2.8 2.9 3.2 3.1
A/G RATIO 1.3* 0.8* 1.3* 1.3* 1.4* 1.4* 1.3* 1.3*
TOT BILIRUBIN 1.3* 1.6 0.8 0.6 0.6 0.6 0.6 1.0
DIR BILIRUBIN 0.9* ? 0.0 0.0 0.0 0.0 0.0 0.0
ALK PHOS 332* 273* 109 71 61 58 57 70
GGT 623* ? 209* 94* 70 77 77 60
AST, SGOT 84* 64* 30 32 26 31 36 29
ALT, SGPT 72* 54* 60* 40 30 36 37 36
LDH 161 148 150 167 151 143 163 156
CPK 95 ? <20* <20* <20* 25 87 56
IRON 122 ? 95 90 101 101 120 115
THERAPEUTIC DRUG MONITORING
FK506 WHOLE 0.0 0.0 16.9 16.2 11.3 13.6 11.4 9.3
HEMOSTASIS
PROTIME ? ? 10.1 10.4 10.6 10.4 ? 11.0
APTT ? ? 25.0 24.6 25.8 25.7 ? 26.6
SURVIVAL STATISTICS
The following information is based on an article which appeared in the July 1996 issue of Hepatology called "Donor Age and Outcome of Liver Transplantation." It is interesting to note that the proportion of patients who received a liver rated as "good" by the transplant surgeon (as opposed to "fair" or "poor") seems to correlate well with survival. If more donors were available, I assume we wouldn't have to settle for fair or poor as often. Right now about ten percent of patients receive only a fair or poor liver. That's not good! What can you do? Contact you local organ bank, and ask how you can help to promote organ donor awareness, of course. About eight people die every day waiting for an organ to become available.
Probability of surviving the operation: 99%
Probability of leaving ICU within 3 days: 63%
within one week: 73%
within two weeks: 79%
Probability of leaving hospital within two weeks: 42%
within four weeks: 80%
within six weeks: 89%
Probability of experiencing a rejection episode within three months: 58%
CMV infection: 22%
Probability of surviving at least three months after liver transplant: 92%
six months: 89%
one year: 86%
two years: 82%
WHEN DO YOU NEED A TRANSPLANT?
The following blood lab numbers are average values obtained just prior to surgery. They are from the July 1996 Hepatology article "Donor Age and Outcome of Liver Transplantation."
average age of patient: 50 years
time on waiting list: 103 days
ALT (SGOT): 130
AST (SGPT): 160
alk phos: 400
bilirubin: 8.5
albumin: 3.0
BUN: 20
creatinine: 1.2
extra pro time: 3.7 sec
ascites present: 61%
encephalopathy: 22%
liver.htm 4-13-97