On December 26 the family -- Grant, Ruthann, Jeanette, Keith and Jared plus John Bingeman and Kay and J. B. Bingeman -- all attended an orientation session at Baylor University Hospital in Dallas. We toured the facilities and spoke with two transplant recipients who were very encouraging.
Tuesday, Jan 2, 1996. The call came at 7:00 am. A liver had been donated that matched Grant's requirements and he had to go to Baylor right away. He and Ruthann took the Tracker and the rest of us (John had returned to Pennsylvania) followed in the van. The surgeon was en route to the donor and if he approved of the liver he would bring it back to Baylor.
By 9:15 Grant was settled into the bed in room 1426 in hospital gown and pajama bottoms. The 14th floor of Roberts is dedicated to kidney and liver transplant recovery. We all waited with him until his time for surgery. Since he didn't have a living will, a form was provided for Grant and Ruthann to fill out, and later two hospital pastors acted as witnesses when they signed it.
A nurse checked his heart, weight, blood pressure, and temperature, and took a urine specimen. The urine was very dark brown. At 10:20 an IV technician hooked him up to the apparatus via a tube in his arm.
Next the EKG technician did his test and the anesthesiologist telephoned to discuss Grant's allergy to morphine and his deviated septum. He will have a tube up each nostril after the surgery. One goes beyond the stomach to the small intestine and is for feeding, the other is for removing stomach contents.
Then a nurse came to give him a suppository and enema, and immediately afterwards a portable chest X-ray machine was wheeled in and X-rays taken.
Pam, a social worker we had met at orientation, visited. Then two people took blood samples and filled out forms as they proceeded. They needed blood for 30 tests. See Grant's home page on the Internet for detailed blood test results -- http://ourworld.compuserve.com/homepages/DrBingo/liver.htm.
Grant took a long shower. He rested in bed feeling drowsy from a dose of antihistamine. At 12:50 a nurse started an intravenous anti-fungal drip. Shortly afterwards an aide checked vital signs again.
At 1:30 pm the anesthesiologist visited. He had a British accent and very pleasant manner. He said their team was called the "United Nations" as there were two Brits, one Indian and a Swede among them. Baylor has three complete transplant teams.
At 2:00 Dr Ramsey, also an anesthesiologist, came to ask if Grant would participate in a blind test of a clotting drug. Grant agreed. Then the nurse, Karen, set up another hour of the anti-fungal drip. At 2:25 an aide took another blood sample.
I asked Karen about Grant's hepatitis B booster he didn't get. She got the Indian doctor, a "fellow" on the team to come talk about it. It will be done after the surgery some time.
At 2:45 Karen brought Valium and Xantax "happy pills" for Grant to relax him for surgery, and at 3:00 he was taken by gurney to the surgical operating area on the fourth floor. Ruthann, J.B. and I went along and stayed in the holding area (a large, busy room with linen storage in one part, desks in other areas, monitors all over and several beds) until time for surgery.
The children had gone home. Keith was at soccer practice. They returned at 5:30 after Ruthann and we had checked in to our respective rooms in the hotel wing of the hospital. Our room was only $16 per day because we were from more than two hours drive away.
We mostly waited in room 1426, watched Nebraska vs Florida at 7:30. At 8:55 a call came from Dr Waldron, anesthesiologist, saying the liver was in and pinking up. Next will be the bile duct. At 10:50 another call to say they were almost finished, and at 11:00 Dr Husberg arrived to say all went very well. He said they had treated about 100 cases of sclerosing cholangitis in the past ten years. Its cause is thought to be an auto-immune problem.
Grant's operation included a "Roux-en-Y" where the common bile duct is joined to the small intestine, not the duodenum. His incision forms a huge inverted tee. Steel staples hold the sides together.
His new liver came from an Hispanic female, and is in excellent condition.
We went down to ICU around 11:30 to wait for Grant to arrive. The waiting rooms were full of people. Most had makeshift sleeping arrangements on couches and floor and some were actually asleep amid the bustle. We were finally told we could see Grant at 2:00 am, Wednesday, Jan 3rd. He was still unconscious, but woke up enough to see that we were there. Only two people at a time were allowed in.
He had breathing apparatus down his throat, a tube in each nostril, his eyes were greasy from something to protect them, his lower jaw was puffy, but already he was less yellow. We were so happy and relieved.
At 5:00 am we returned. I held his hand for a few minutes and talked to Joanna his nurse, who said he was doing well. At 9:00 we returned. His breathing tube was out. He was still drowsy.
Ruthann talked to Dr Husberg who gave the surgery an A- grade, the minus being Grant's poor clotting factor. Some blood had to be replaced during surgery, as his existing blood was not recirculated as is sometimes done.
At 11:00 am we tried to visit again, but had to wait until 1:00 pm. Grant looked much better. The puffiness was almost gone. He was still drowsy from the intravenous Benedryl he was given to keep his nasal passages clear.
A sonogram, an X-ray and more blood tests were done, then at 3:45 pm he was moved to room 1427, back on the 14th floor. Shortly afterwards a group of doctors came by. They explained that they are using a new anti-rejection drug called Prograf. Grant was very much involved in the discussion. The doctors and nurses were all very cooperative and answered his questions in detail.
His medication was given via a tube in the side of his neck at the shoulder. Prednisolone, a steroid, was one and it caused Grant some hot flushes.
He was asked to lie on his side now and then and to keep his upper body at a 30 degree angle to avoid pneumonia. A respiratory technician gave Grant four or five vibrator treatments during the day and also measured his inhalation capacity. For his age and size 3000 ml is normal. At the first try he reached 1500 ml, then 2000. The inhalation device was left with him so he could use it frequently to expand his lungs.
His room had a large chair that converted to a bed, one other chair, TV, phone, small closet, bathroom, view of the Dallas skyline, shelves, cabinets and drawers.
Thursday, Jan 4. Ruth had slept in the convertible chair and J.B. and I came over from the hotel at 9:00 am. We had a long talk with Dr Levy who was very reassuring about the health and age of the donor.
Grant's catheter had just been removed. He could sit up and soon went for a short walk with the IV equipment rolling alongside. During the morning two of the three drain tubes were removed from his abdomen, and he was given a sponge bath and shave. He was very tired because he couldn't sleep last night. The nurse will give him something to help him sleep tonight. At 5:15 pm a nurse came in bearing a tray with 24 slots of medicines including Prograf, insulin, heparin, antibiotics, etc. She also cleaned out the various lines.
Dr Husberg came in to tell Grant, "trust me, I'm the expert" concerning the liver selection. Grant was very worried about some altered notations on his chart. The new drugs can cause changes in patients and he was quite paranoid for a couple of days.
I bought a plush Wylie Coyote in the gift shop. It reminded me of Grant as a child watching TV cartoons. I placed Wylie on the window ledge where he glared down at the bed in his typical fashion.
J.B. slept in Grant's room that night. Grant again slept poorly, talking a lot about work and asking frequent questions -- he was just not himself. Ruthann had gone home for the night.
Friday, Jan 5. I joined J.B. in the room at 8:00 am. The respiratory technician arrived for vibration and inhalation, then the nurse checked Grant's lungs. Next a group of doctors on rounds including two very young-looking interns. Dr Levy went over the figures on the chart. There are about 20 items that are recorded there daily.
About 9:00 Grant was taken down to have a sonogram to see how the hepatic artery was doing. When he returned a nurse removed the suction tube from his stomach.
Physical therapist Barry came and took Grant for a walk and afterwards showed him leg exercises to do. A nephrologist then reported that the ultrasound picture was perfect.
Now that the suction tube was gone, Grant was able to cough up a lot of mucus. He started taking some pills orally and also had a vitamin K shot to improve clotting.
Everyone who dealt with Grant used disposable rubber gloves from a box on the wall. Masks were not used. Grant's temperature was taken several times daily using a thermometer in his ear. His blood sugar was checked several times using a spring-loaded knife and color-coded paper.
Dr Husberg came up to talk to J.B. and me about the donor, knowing Grant was worried. He pointed out that an older donor is far less likely to have a hidden liver or other problem (e.g.: aids or hepatitis), and that the liver regenerates and does not age like the heart or brain.
12:00 noon. Grant was given a new infusion of antibiotics via the tube in his neck. Later he and J.B. walked three times around the nurses' station. Then Ruthann gave Grant a bath and a dry shampoo. A man visited who had received a transplant two years ago.
During one of the inhalation sessions Grant coughed and sprang a leak in his incision when one of the staples popped open. From then on he continued leaking a yellowish clear liquid and required many dressings over his whole abdomen to absorb the flow. These had to be changed several times a day. At first the nurse taped them on, but the flow was too copious and a stretchy net cummerbund had to be used. His incision is a large inverted tee held together by 37 staples.
In mid-afternoon some of his numbers were up and his color was yellowish again. The staff didn't seem worried. They gave him a sleeping pill that evening. Ruthann stayed with him.
Saturday, Jan 6. He slept better last night but was awake when I came over at 6:30 am. At 7:20 he had a vibrator treatment, then a bath and change of dressings and some oral medication.
A new doctor came and said some figures were mixed and confusing. He wanted to do a tee-tube cholangiogram. Almost at once a wheel-chair arrived and Grant and Ruthann went down to have the procedure done. Luckily the report was good.
At lunch Grant had his first tray meal, mostly jello, mousse, soup and juice.
Very loose bowels again. A sample was taken for analysis, and a small amount of blood was found. The doctor suggested Pepcid antacid four times daily, the first line of treatment for any ulcer that might form as a side effect of the drugs he was taking.
Around 3:30 pm the bile bag was removed, leaving only the tee-tube. Then another blood sugar test showed the range as high normal. Then Prograf, and a supper of broth and other liquids.
Another dressing change, another vibration session, and then to bed.
Sunday, Jan 7. We came to Grant's room at 8:00 am. He hadn't slept well despite a pill. He seemed very worried, wondering if he had been told everything. He said he felt very weak. He walked once around the nurses' station. At 9:15 a pharmacist came to check the medication chart and a Dr Osmond said he would be doing a liver biopsy because Grant's numbers were up. Vital signs were taken before the biopsy, and four more times every ten minutes following the procedure to check for bleeding.
At 11:30 the doctors on rounds came again plus a pharmacist and some technicians. The biopsy results would not be ready until the next day, as it was Sunday and bad weather had kept some of the staff at home.
Grant had a solid lunch of potatoes, chicken breast, cake. J.B. and I spent the night at the house, Ruthann at the hospital.
Monday, Jan 8. We arrived at the hospital at 10:00 am. Grant had eaten a large breakfast. Barbara from the outpatient clinic came by to try to regain Grant's confidence. He had been told he would receive Neoral (neosporin), but had instead been given Prograf, and he didn't like the surprise.
A new team of doctors headed by Dr Goldstein (youngish, with short pony-tail hairstyle) came by. Also a nutritionist at 10:30. Then Doug from the "lively livers" support group. Then Craig from physical therapy who tested Grant on the stairs and then discharged him from the physical training program. He told Grant to walk daily, slowly increasing his exercise time.
At 11:30 vibration and inhalation therapy. Grant's lower right lung was sore; it hurt when he inhaled deeply. The right lung was being crowded by the swelling of the liver, and had also been pushed out of the way during the transplant, so was feeling a bit abused.
Blood pressure and temperature taken, then lunch. The new team of doctors arrived with Dr Husberg at 1:30 pm. Dr Goldstein said if the biopsy pathology report was good, then Grant could go home.
At 3:30 Sharon from the clinic came to talk about what to watch out for at home. Grant complained that his incision was leaking more heavily. She said that it was not necessarily bad, especially since there was no blood. Nurses were keeping a close watch on it. She also reviewed the drug schedule. She is part of the post-op team.
Tuesday, Jan 9. We arrived at the hospital at 10:30 am. Ruthann changed Grant's dressing. Sharon looked in to say that all Grant's drugs were available through Albertsons pharmacy. After lunch the latest figures came in but no word from Dr Goldstein until 5:00 pm as he was in surgery all afternoon. He discharged Grant and we went home in the van.
Wednesday, Jan 10. Grant and Ruthann drove down to Baylor, leaving at 6:00 am for blood tests. Back at 8:00 am for a big breakfast. Quite an active day for Grant. About two hours after supper he broke out in a bright red flush over his face and upper body accompanied by itching. It came in waves. The clinic advised Benedryl and soon after taking it, the flushes stopped. Perhaps it was an allergic reaction to the tuna steak at dinner, or perhaps it was a drug reaction.
Thursday, Jan 11. Another 6:00 am trip to Baylor for blood work, as the numbers were still elevated. In the afternoon they called to advise that the numbers were lower, and they lowered his Prograf dose to 5 mg twice daily.
Friday, Jan 12. To the clinic at Baylor. From now on Grant must go every Tuesday and Friday for three months. The seepage continues to be heavy, but the doctor says better to seep out than inside as in some patients.
Saturday, Jan 13. Grant and I walked several blocks. Later he and J.B. walked the same route. Grant had a good appetite and was in good spirits all day. Seepage continued.
Tuesday, Jan 16. To clinic again. No call in afternoon, so all is well.
diary.htm 2-23-97