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About 7 months post transplant, Marylin's bilirubin was over 2.0. While on a routine clinic visit, Dr. Gr insisted she have a stat ultrasound. This showed a stenosis of her common bile duct. She was scheduled to have a biliary drain inserted, followed by biliary duct dilatation. She arrived at the hospital on Dec 20th for an outpatient procedure with a bilirubin just above 2.0. She left 33 days later, in liver failure, with a bilirubin of 16.0. Here's the story.
Marylin and I arrived at Radiology at 7:30am for an insertion of a biliary drain to relieve her stenosis. Her weight was 107 lbs. Her bilirubin was in the 2s. She was scheduled to be an outpatient. At 7:45am, we went to the holding room for Radiology. She undressed and had an IV started. Everyone was pleasant and friendly. The radiologist came out to talk to us. I explained to him that I am in charge of Special Procedures where I work. He said then you know all about this. I said we only do biliary drains rarely and then only on terminal patients. He explained the procedure. I asked him what the complications were; he said "the usual", but they expected none.
Marylin was taken into the Radiology suite and I went to the Radiology waiting room. Around 10:30am, one of the doctors came to get me. Marylin was in pain, but not terribly so. The radiologist showed me a film. They were able to get in, but because of the angle could not open the lesion. He wanted to try again on Wednesday under general. He also wanted Marylin to stay in the hospital so she can begin prophylactic antibiotic therapy. Marylin was taken to her room. The rest of the day was uneventful.
I called several times. Marylin was in good spirits, but lonely. I was at work and then saw Kalen, my son, so I did not visit today. Marylin was administered Flagel prophylactically.
I arrived at Marylin's room at 8am. We went to Radiology and I stayed with her until she went in the room. This procedure was done under general. I watched the anesthesiologist lay the air tubing on the floor to vent the room, hardly a JCAHO procedure. About 11:15am, the radiologist came out to get me. The procedure was successful and he was taking Marylin to Recovery.
Marylin arrived in her room about an hour later. She was sleepy and in pain. She was placed on a general diet immediately. She began vomiting several hours after she ate. She was miserable most of the night.
I called Marylin from work at 6:30am. She was in some pain. I can't remember if she had a fever. About 9:30am, Marylin called me to say she was going to Radiology because there was leaking at the right lateral tube and she was in pain just below that area.
I left immediately. Marylin was in Radiology when I arrived. I asked if I could come in the room. I was told they would be done in ten minutes, an oblique no. Marylin was put in the holding room. She was in pain, but otherwise okay. When she recovered, she was sent back to her room. I stayed with her until 2pm.
I called several times throughout the evening. She was in pain below her liver. I believe this is when the fevers began. Antibiotics given IV were Flagel, Gentamicin and Vancomycin.
I called Marylin from work several times. She was in pain, but could eat. I arrived at 4pm. Her spirits were good; she was hoping to come home tomorrow. She got more of the same antibiotics. The pain had increased below her liver.
I called Marylin; she thought she may be able to go home. By the time Kalen and I got there, we found out she had to stay. Her temp had spiked. Kalen and I stayed an hour.
I dropped Kalen off at my parents at 4pm and stayed with Marylin until 7pm. She was depressed.
I called Marylin at 9pm. Her fever spiked and the pain was worse under her liver. She felt poorly.
Marylin called me at 12:15am to say she was going for a stat CT of the abdomen.
I called Marylin at 7am. She had a terrible night. She sounded so bad and I was worried about the results of the CT. I told Kalen I had to go see Marylin and asked where he wanted to go. His first choice was his mother, but she was not home. Second choice was Karen's parents. Kalen's Uncle Jim was there. I told him I had an emergency and asked if he could take Kalen as I could not reach Karen. He agreed.
I got to Marylin at 10am. She was in poor spirits and had not slept well. Her temperature was going up and down. I stayed until 6:30pm. Dr. R came and talked to us, but could not answer some of my questions. She said it was up to another physician. Marylin's spirits were better when I left. Pain slightly increased below her liver.
I called at 9pm. Her temp was up.
Marylin had a bad night. She got K-Phos, which burned her arm terribly.
Kalen and I arrived at 12pm. Marylin's spirits were better and since she finally had other company, Kalen and I left at 1:30pm. Marylin said she was in a great deal of pain below her liver. I called Radiology and told them Marylin was an inpatient as she had an appointment with Radiology tomorrow. I was told that Marylin would be coming down. I said no one was aware of that here and asked why. I was on hold for some time when a radiologist came to the phone. He said they wanted to tap the fluid filled sack below the liver that showed on the CT. I asked him if it was bile or pus. He wasn't sure. I said to use the smallest tube possible; I said I was sure it was bile as it was unlikely an abscess would form that quickly. He said they might use an 8.5F Cook. I said to keep it to a 5F pigtail.
I called Marylin that evening. She said the new drain was inserted easier than the others, but it still hurt. She now has three tubes in her. The radiologist wanted to upsize the right lateral drain with a 10F Cook, but Marylin refused. He settled for a new 8.5F Cook. This controlled the leaking around the tube externally. Marylin is still getting antibiotics and having trouble with fevers.
I called at 7:15am. Marylin had a rough night. Her fever was down to 37.7 (99.9) per Marylin. She has been getting Potassium in her IV and it hurts her arm terribly. She has a cold pack on her arm to reduce the pain. The pain in her arm is so bad, it has overshadowed the pain under her liver. She slept poorly. No word of when she will go to Radiology.
I called Marylin's nursing station at 7:30am and asked to talk to her nurse. I was told her nurse had gone home and Marylin has not been reassigned. So she has no nurse. I told the nurse I spoke to that I wanted Dr. R to call me at home. I gave her my number and said I would be in until noon. I got no call.
I called at 9am. Marylin was miserable. Her fever is down, the pain in her right abdomen is down but the K-Phos really bothered her a lot. Her nurses tried to start another IV; it failed and it hurt her. She is so down she said she is "fucking miserable"; for Marylin to say that is something. I tried to encourage her and told her to hang in there.
I called at 11:30am. No answer after eleven rings. I called the nurses station and got Marylin's nurse. She said Marylin is sleeping. I said that's really good, she needs some sleep. Apparently, Marylin's potassium is low, that's why the K-Phos is being pushed. The Vancomycin is going in, but too slow. It has to be in within four hours and it's dripping at the rate of 20 cc/hr. Marylin is going to Radiology today, time unknown. Her temp has been 37.2 (99.1) all morning, which is the best it's been in five days. Some positive signs here, finally. I thanked the nurse and asked her to please tell Marylin I did call and would arrive around 5pm.
I arrived at 4:45pm. Marylin felt better. She was sitting up in a chair. There is a collection bag on the bilioma drain; apparently more bile came out. Marylin doesn't know how much. The radiologists changed the tube, but did not upsize. Marylin says it feels better. She spoke with Dr. K. I went to the nurses' station and spoke with her nurse. I asked him to page one of Marylin's doctors and have them come or call Marylin's room; I would be there until 8pm.
I gave Marylin a sponge bath. She hasn't had one in three days, the last time I did it. Her nurses feel Marylin is capable of doing it herself even though she has three drains, each with a collection bag. Her temp is 37.7 (99.9). She felt poorly all day. She went to Radiology at 12:30pm so she didn't get much rest. The radiologist spoke with her, but did not do the procedure. She was there half an hour. Marylin's nurse came in with a pen and a paper towel and suggested I write questions down and Marylin could ask the doctor tomorrow. I said I rarely see the doctors and they do not return my calls. If they're not here, they can call me, but I want to speak with a doctor.
Half an hour later, while I was shaving Marylin's legs, Drs. R and C arrived. Dr. C said Marylin has a bilioma. Surprise, surprise. I asked how that is going to close; the intimation was that the body would heal itself. Less came out today. Marylin noticed this and so did the doctors, although no volumes were mentioned. Marylin is still tired from last night. I asked why the potassium is down. They were very vague. Dr. R actually suggested that now she is having her labs monitored daily whereas before she only had them every six weeks. We all know this is bullshit; it's probably the antibiotics. I asked what caused the bilioma. No real answer. Dr. R suggested that it might have been there before she began her hospital stay. Right. No pain or fever since coming home from her transplant seven months ago, but the bilioma existed prior to this admission. I asked what would have to occur for Marylin to go home. She must be fever free for three days and pain managed with Tylenol 3 or less. Also, every day she is going to Radiology where they will check on the bilioma drain. I said none of this happened until the trauma. Dr. C said "Trauma?" I explained what I meant; while they didn't agree, they didn't disagree. It's pretty obvious this is iatrogenic in nature. They also said that Dr. K tried to call me after Marylin's procedure today, but I was gone. There was no message on the machine when I got home. While Drs. R and C were vague, they were nice and I was surprised to see them.
Marylin and I went to the gift shop by wheelchair. It was closed so we went to the cafeteria, where she had some lemon tea.
I drained 350 cc of bile off the anterior bag. Marylin's temp at 8pm was 36.9 (97.9), the first time I remember it being normal since last Thursday. Blood pressure is okay, although the nurse did not give me numbers.
I called at 6:45am. Marylin's nurses were trying to start an IV. I called at 7am. Marylin was good; she had a good night.
I called at 10:30am; Marylin still doing well. Sometime between breakfast and lunch, someone from Radiology came to check the bilioma drain; she squeezed the bulb and got barely anything out. There is just enough to fill the connecting tube, maybe a few ccs in the bag.
Around noon, Marylin had a temp of about 101, but by the time I arrived at 3:15pm, her fever was down to 99-99.5. The same at 5pm. Drs. R and C came with some nurse from the transplant team. Dr. R said both the aerobic and anaerobic cultures were negative from the bilioma tube; of course, I had to ask. They corrected their statement from yesterday. Marylin's potassium has been fine, it was her phosphates that were low. They took time to check the chart. I asked where the infection is coming from. I was told it may not be an infection, all these symptoms could be caused by bile.
Marylin ate mediocre at breakfast, but the food was crummy. She ate a good lunch. She drank Ensure while I was there and it filled her up. She's got localized pain.
Clean linens throughout this day are rarely in the room; I have to go get them myself or ask a nurse for them. Marylin says every day she is given four wash clothes, but they're gone by the time I get here.
I called at 9pm. Her temp spiked to 39.0 (102.2) at 8:30pm. She is covered in sweat now, so it sounds like the fever is breaking. Another blood culture will be drawn.
I called at 9:45pm. Marylin's spirits are better and her fever is about gone. Vancomycin is going in. Marylin wants to refuse the blood cultures, but I said to have them. When she moved her leg, she had one sharp pain in the bilioma site. No recurrence.
I called at 6:30am. Marylin's temp spiked last night just after I called to 39.0 (102.2). It dropped quickly with a Tylenol suppository to 37.9 (99.9). Her temp now is 38.4 (101.1). The anterior bag has a leak in the seam. Her mouth is dry; she's waiting for water to come. I know she's discouraged; I encouraged her to try and hang in there.
I called at 9:30am. The nurse answered the phone; she was trying to restart Marylin's IV. Her temp is 38.0 (100.4).
I called at 10:15am. Marylin said her IV is in. Temp now is 37.7 (99.9). Her spirits are better, but she's really upset because no one seems to know what's going on. Someone from Radiology was up to see her.
I called at 12pm. Marylin was not there. I called her nurses' station. Her nurse was not aware Marylin was going to Radiology, but Marylin knew. I called Radiology and talked to a radiologist. He is reading her CT; he is looking for something besides the known bilioma. I suggested to him that the right lateral drain could be removed; it is not functioning and is serving no real purpose, so why not get it the hell out of there. She's been there way too long already. He said he would have to talk to the chief radiologist. He did say Marylin would drink Gastrografin which made me wonder if they are thinking she could have a perforated bowel. The radiologist said he would call me at home and leave a message.
I called Radiology at 3:30pm. I was told Marylin was back in her room. I called Marylin. She felt better. Her temp is 37.7 (99.9). The CT showed some fluid remaining in the bilioma so the tube was repositioned. Now even the surface pain is gone. The right lateral tube won't be removed until Monday or Tuesday of next week. This is not what we were told when that tube was put in. Marylin was impressed with her treatment in Radiology.
Dr. K called me at 4:15pm at home. He seemed like a nice man. He explained that Candida, a yeast infection, was growing in Marylin's blood stream. He wants to start Amphotericin B, a very potent antifungal drug. The duration of this drug would be at least two weeks. This led to another issue. Marylin's veins are about shot. Dr. K wants to insert a central line in the jugular vein. Marylin was very upset and insisted Dr. K call me. He explained that Amphotericin B can have significant effect on the kidneys and renal function tests, BUN and creatinine, would be monitored daily.
I agreed with Dr. K and called Marylin immediately after; we agreed to go ahead.
a radiologist called at 4:45pm. He said the CT looked good and the tube was readjusted. The right lateral drain needs to stay in longer so that the duct at the site seals well and does not make a fistula when the drain is removed. Nice man.
I called at 8:30pm. Still no IJ line. Marylin ate well and walked around. IV site #10 is in. She was going to get Gentamicin; I said Dr. K told me they weren't going to give her the old antibiotics any more and to have her nurse call him. I suggested to Marylin that since it is late, why not wait until tomorrow. She wants to get it over with.
I called at 10pm. Marylin is still getting Vancomycin; her nurse talked to Dr. K. Marylin is very apprehensive. Her temp is 37.5 (99.5). She felt hot, but it could have been the Vancomycin. She got two Tylenol and Benadryl 50 mg orally prior to the Amphotericin B.
I called at 6:30am. Marylin was feeling poorly; her temp is 39.3 (102.7). She said her IV site blew again, but the nurses were able to get the two most important antibiotics in. A doctor is there to do a blood culture so I let her go.
I called at 6:45am. She feels a little better. She will have a Culture & Sensitivity done on her urine. Marylin talked to a Dr. S already this morning. He said they cultured Candida in her bile. Marylin said Dr. K told her yesterday that it's normal for Candida to be in the bile.
I called at 11am. She said they were preparing to put the IJ line in; Marylin was very nervous. She asked Dr. R what took so long for them to get around to putting the IJ line in. Dr. R stated the nurses never called her to say Marylin's IV site had blown again at 5am.
I called Marylin's nursing station at 11:50am because I had not yet received a call from Dr. R. Marylin was so nervous she had to get Ataban to relax her. I was short with Marylin's nurse. I said it shouldn't take more than ten minutes to get that line in.
Dr. R called me at 12:15pm. The IJ line is in; Marylin is fine. A chest x-ray will be done to check tube placement and for pneumothorax. Dr. R reminded me that this is a teaching hospital and therefore things take longer. I asked Dr. R if Amphotericin B is put in foil; she replied dark plastic.
I called at 1:15pm. Marylin was calm; the chest x-ray had been taken.
I arrived at Marylin's room at 3pm. She was sitting in a chair and feeling pretty good. She was warm, but not bad. The IJ line had to be readjusted, it was down about 5 cm too far. Dr. B did the procedure with Dr. R in attendance. Dr. R stuck herself with a suture needle. Marylin consented to hepatitis and HIV testing. Marylin is asleep now; she is exhausted. At 6pm, her temp is 38.7 (101.7). Her nurse came into the room; I had to ask about Marylin's antibiotics. She said no one ever called to say the IJ line was in place. I'm wondering if the antibiotics would ever have been started if I had not reminded them. At 7pm, the IJ line has been in for seven hours and no antibiotics have yet been given. It will be one more hour before the chest x-ray is read. I had to ask to find that out too. I could take Marylin anyplace in this hospital I wanted and her nurses would never even know where she was. No one ever objects. It seemed as if they were happy; they didn't have to worry about her or care for her. Somebody else was there to do it.
I called at 8:30pm. She is getting Vancomycin, Normal Saline and another antibiotic, name unknown. Her temp is 39.0 (102.2).
I called at 7:15am. Marylin had a bad night. She had a fever on and off while she was getting the antibiotics. Her temp hit 39.3 (102.7). She had some nausea and dry heaves. She got Compazine; it took awhile, but it worked.
I arrived at Marylin's room at 12:15pm. I brought her a homemade chicken salad sandwich and a coffee from McDonald's. She has some comments about one of her nurses that were really bad. I don't understand why this hospital keeps people of such poor quality.
Marylin was doing pretty good for a while. Then her temp went to 39.1 (102.4). She got some antibiotics. Marylin said her nursing care improved when I came.
Marylin had a can of tea, an ice cream bar and a candy bar. She ate some of her supper, but it was pork. Since her transplant, pork makes her nauseous. I stayed until 8pm.
I called at 9:30pm. Marylin was okay. She had a cold pack on her head; Vancomycin was infusing. She wasn't looking forward to the Amphotericin B, but she knows she needs it.
I called at 7:30am. Marylin was asleep; she sounded pretty tired. She had a rough night, but no worse than any others.
I arrived at 12pm. Marylin drank orange juice for breakfast, took her Prednisone and vomited. She did okay with lunch. Dr. C came in and introduced Dr. J who will be taking over for him. Dr. C is switching services. Dr. C is calling in an infectious disease (ID) specialist. Dr. K visited about an hour later. He said the Candida was cultured out of the bilioma; it never actually cultured out of the blood. A little staph also registered, but Dr. K thinks it's local, not systemic. ID was being called because Marylin's doctors need to know how long to continue the Amphotericin, when she can go on oral meds, when she can go home, etc.
Marylin stayed in good spirits. She had a little nausea. She's being given more fluids. Her creatinine is up to 2.0; 1.4 is the normal high at the U of C.
I called at 9pm. Marylin was doing well. Vancomycin is being decreased to once per day. Dr. K dropped by again to say hi.
I called at 8am. Marylin was doing well.
I called again at 10am and 11am; everything was fine.
I arrived at 3pm. Dr. G, Dr. J and another doctor were there. Her temp is 37.7 (99.9). Marylin drank a lot of water. Fluid is going through the IJ line constantly. The creatinine is down to 1.9. Her bilirubin is normal. I had to pry the information out of these people, but they did give it to me. Dr. T from ID came today. I asked Dr. G when Marylin could go home; he said maybe this weekend. I asked about pulling at least the right lateral tube and the bilioma tube. He thinks maybe she should go home with them. Marylin does not want to go home and be admitted again after a few days. She is holding her own. She doesn't like my chicken salad. She is not thrilled about going back to Radiology.
About 4:30pm, Dr. K, big cheese of ID, came in with four other ID people, among them Dr. T. Dr. K listened to Marylin's chest. He has a very grave demeanor. He said the prognosis on the infection was very good. He said that cultured Candida twice out of the bilioma, once from the anterior drain and once from her blood. Marylin is still feeling better. As a precautionary measure, Marylin will go to the Eye Clinic to make sure her eyes aren't affected by the Candida even though she has no symptoms. Dr. K said the main thing was to get the bile duct stenoses taken care of. He asked if the bile drains had improved her condition; the way he worded it was that she should be feeling much better than before she came in. Marylin said nothing. I spoke up and said that these drains have caused a significant decrease physically. She came in for an outpatient procedure; it is now Day 15 and still counting. We now have three drains, not one. Dr. K was not very happy with me, but I did not care. At least I gave a complete version of the truth, not a simplified version. He may attempt to make things seem normal, but they are most definitely not. I felt he was trying to skirt the issue. But we didn't skirt it, we made a point of it. Dr. K also added that Marylin would be switching medications in the very near future away from Amphotericin.
Marylin's nurse was so busy that the care was inadequate. Not because the nurse wasn't doing her job, only because she was stretched too thin. They definitely need more help here.
At 6pm, Marylin's BP was 122/64 with a temp of 38.2 (100.8). She is nauseous and has vomited a little. Her temp is up and down, but not too high. Marylin is discouraged; I tried to pep her up. Her nurse didn't make an appearance from 3pm until 6:30pm when Marylin called and asked for Tylenol. The nurse stayed a few minutes, came back once a few minutes later and that was it for the nurse until 8pm.
I called at 9pm. The nausea was gone. Marylin's temp was 38.9 (102.0). She is still pushing fluids. She's worried she may have to go to Radiology because she heard her nurse paged for a call from Radiology. I told her to relax.
I called at 7am. Marylin was feeling better. Her temp is 37.4 (99.3); no nausea. She sounds good. Marylin knows she is going to Radiology today, maybe to remove the bilioma tube. She slept well and her spirits are good.
I called four times during the day. Marylin's doing well. She's going to Radiology tomorrow. She is HIV negative; no results on the Hepatitis screen. The creatinine is up to 2.1.
Around 3pm, Marylin started to get hot. Her meds are being changed. She is going to only receive Amphotericin per Marylin. I encouraged her to push fluids.
Kalen and I called at 6pm from Discovery Zone. Marylin was doing well. Greg and Gerri were there.
I called at 9:15pm. She is still doing well. Marylin has a muscle ache in her right forearm, but it's positional. Wendy came to see her. Marylin is worried about going to Radiology tomorrow because every time she does, something bad happens. I asked Marylin to please quiz them as to what they're going to do. If they're not going to pull the bilioma tube, ask why and have them call me.
I called at 7am. Marylin was doing well. Her temp is 37.6 (99.7).
I called at 10am. Dr. R has changed services; another female doctor has replaced her, name unknown. Marylin is tired and achy. Her temp is 37.7 (99.9). Marylin was told the effect is probably transitory from the Amphotericin. I looked it up and that is a normal side effect. Her doctors want her to have a chest x-ray; now they say because there is a chance she has pneumonia.
I called at 12pm. Transport came for Marylin and I said good luck.
I called at 1:30pm; no answer. I called Radiology. I was told Marylin just arrived. I asked what took so long; no one knew.
I called at 2:45pm; no answer. I called Radiology. By luck, I got Dr. R. He said the perihepatic space is bigger, so they upsized the bilioma tube to 8.5F. I asked where the fluid is coming from; he doesn't know, but thought maybe the right lateral drain is leaking internally. I asked where it's leaking from and why hasn't it sealed; he doesn't know. He said the anterior drain is draining externally to decompress the liver and hopefully this will seal the right lateral drain. He said Marylin was febrile; I said that was news to me. Dr. R also said that two weeks should have been more than adequate for the right lateral drain duct to heal. He said he's only seen this happen once or twice before and he doesn't know why this happened. Our conversation was interrupted several times because he had to answer the phone. I thanked him. Marylin was fine right before she left for Radiology. I asked, only speaking in regards to the drains, can Marylin go home; he said yes.
I arrived at 3:45pm. Marylin was just arriving from Radiology. She said that right after we spoke her temp went to 38.8 (101.8) in Radiology. The ultrasound radiologist said her bilioma measures 4 x 1 cm. There's bile and gunk in there per Marylin. There is a small amount of blood in the bilioma drain connecting tube, nothing in the bag. Her temp now is 37.2 (99.0); BP is 128/70. She is feeling well. I asked Marylin's nurse to page Dr. G. He never returned my call. Marylin said she asked the radiologist downstairs if they sucked anything out of the bilioma; she never got an answer. The radiologist chose not to do a cholangiogram. CT and US were used prior. Marylin has no pain from the bilioma; the pocket that needs to drain is anterior and superior from its present location.
At 6:15pm, Dr. Z came in and introduced himself. He seems like a nice man. Nothing else has grown out of the cultures other than Candida. The bilioma was the first site to culture the Candida; Candida was cultured from the blood on Dec 27th. He wants the chest x-ray to rule out pneumonia. He thinks Marylin has decreased breath sounds. If the fever continues for another three days, a new IJ line will be placed on the left. He doesn't know if the infection is from something old or something new. Blood and urine cultures were done. She will go back on Vancomycin and Flagel.
At 7:15pm, Marylin vomited. I believe it is because of the Fentanyl. She vomited several times. She felt better after. There is some surface pain by the new bilioma tube. Her temp is 38.8 (101.8). Her nurse is giving her a Tylenol suppository. Marylin has chills that are relieved by slow deep breathing. Her BP is 138/70.
I called at 7am. Marylin had a miserable night. She was nauseous, had pain in the right side where they upsized the bilioma tube and had a temp of 38.8 (101.8). Her temp now is 37.7 (99.9). Her mouth is very dry; water does not help. She has a headache; her body is tender. The bilioma tube is not draining. Marylin is very disgusted; I spent most of my time trying to cheer her up. I asked her what she thought about surgery to clear the bilioma; she's for that now. She is very sleepy.
I called at 9 & 10am. Marylin is still disgusted, but feeling better. The roof of her mouth wasn't as dry. Dr. T, ID, told her she could go home, but the bilioma wouldn't heal as quickly although he never said why.
I called at 6pm. Marylin felt good. Dr. G came by at 4pm. He told Marylin he talked to the doctors in Radiology. They don't think the bilioma drain will work and therefore Dr. G is thinking surgery. He was surprised a surgeon had not already seen Marylin.
I called at 8:45pm. Marylin's temp now is 37.5 (99.5). Marylin's nurse has come in the room twice in the last six hours to check Marylin's vitals. Her urine hat is overflowing. The nurse seems to be much too busy some place else. Marylin still has not had her chest x-ray. This could have been done either yesterday or today. She got a new IV med, magnesium sulfate; it made her very hot. The nurse said this was normal. Marylin got Flagel.
I called at 10pm. Marylin's IVAC was beeping. The nurse had forgot to set the volume to be infused and the total volume. Marylin feels better, but is nervously anticipating the effects of the Amphotericin. I said I love her and would call in the morning.
I called at 7am. Marylin went down for a routine chest x-ray at either 1:30 or 2:30am. Marylin was so tired she wasn't sure. It could have been done any time in the last two days. Marylin's transporter or the technologist told her the reason the chest x-ray was done at that time is because it was just ordered. She is drinking barium now for a CT scan to be done to evaluate the bilioma. No fever, but the barium makes her nauseous. No creatinine results from yesterday, but Dr. J told Marylin her kidneys are working fine.
I called at 8am. Marylin had already left for her CT.
I called at 9:30am. Marylin got back at 8:30am. No results on the chest x-ray or the CT. Marylin met the CT supervisor who seemed very caring and considerate. Dr. T told Marylin he made his recommendations to Dr. G for surgery. He wanted no more tube manipulations. A new antibiotic was started, Tobraxamycin, followed by Vancomycin. Her temp is good and so is the BP. Dr. J or Dr. G is supposed to call me later. Marylin requested Dr. P for the surgery; she was told she might get Dr. N. Her temp now is 38.2 (100.8), post antibiotics.
I called at 12:30pm. Her temp is the same: 38.2. No nausea. Marylin remembers Dr. T asking her earlier today how she felt about a blood transfusion. Her temp was just taken: 37.9 (100.2), BP is 138/77, pulse is 100.
I called later. Marylin is getting hot, but does not know her temp. Dr. G came by. He wants to let Radiology try one more time. Marylin absolutely refuses. Hopefully, surgery will be Monday. The day nurse put the Flagel in an IJ port wrong and a good portion of it spilled on Marylin. Her gown and pillow were wet.
I arrived at 6pm. Marylin is pale and weak. She needs at least two units of packed cells. I asked Marylin if anyone knows what had happened that she needs the blood; she doesn't know. Chest x-ray was normal. The CT shows two pockets in the bilioma, size unknown. Marylin has agreed to go to Radiology on Monday, time unknown. Dr. G and the surgeon talked her into it. They maintain it would be major surgery; they would have to cut at the same incision site and the infection could spill out. Per Marylin, Candida is not culturing out in the blood anymore. The surgeon will return later this evening to talk to me. Her creatinine is 1.5, slightly above normal. At 6:30pm, I shaved Marylin's legs and put lotion on them. Her spirits are up. Dr. W came in, nice man. Her hemoglobin is 7.3, hematocrit is 21. We agreed to two units of packed cells immediately. He thinks the hemoglobin is dropping because the blood is being so diluted by the IVs. e. Marylin's urine hat is full. What's new? At 8pm, BP is 116/60, temp is 37.3 (99.1).
I called at 9pm. Marylin was very nauseous.
I called around 10pm. Marylin was better. Her nurses were working on the blood IV; something wasn't working quite right.
I called at 7am. Marylin had a bad night. She had a reaction to the blood: coughing and wheezing. She had to get Lasix, which corrected the problem, but caused her to urinate every half-hour. Her central line site is sore. I just hope they don't wear her down to nothing trying to cure her.
I called at 10am. Marylin is tired, but feeling better. She wants to rest and a salad for lunch.
I arrived at 12:15pm. She doesn't remember who her nurse was last night. Her nurse today is very good. She has a nursing assistant was rude and inconsiderate.
Marylin does not know her creatinine. Her temp is 37.4 (99.3), BP is 123/70, she thinks. She had a fever last night, in the 38's. I noticed jaundice in the whites of Marylin's eyes.
I called at 5:15pm. Marylin's spirits are good. Her potassium is 2.9 (normal low at U of C is 3.5). She will get potassium IV again like yesterday, but no K-Dur along with it.
I called at 9:15pm. Marylin is doing well with the potassium IV. She got magnesium sulfate IV again. Her magnesium level is 1.5 (normal low at U of C is 1.6). She got Cipro and is getting Amphotericin now.
I called at 7:45am. Marylin felt pretty good. No fever. Her dressings were changed yesterday. The way it was done, her tubes pull, so Marylin will see if she can be redressed today. She is tired and very crabby. She asked for water an hour ago and still hasn't got it. I called her nurses station and got Marylin's day nurse. I explained the situation and the nurse said she would take care of it. Five minutes later, Marylin had her water. Marylin's call light is not working. I gave her the number to the nurses station to call if she has a problem. She found out later the call system on the entire floor went out, but the patients were not told at that time or given an alternative procedure to get a nurse, other than maybe shout like hell. Dr. S, an intern, came by. He is hoping for early am tomorrow morning for the CT. The urine hat is overflowing again. Dr. N dropped by to say hi and things are looking better.
I called at 2pm. Marylin is tired, but okay. Her temp is 37.7 (99.9). Wendy and Archie are there.
I arrived at 6pm. Her temp is 37.9 (100.2). Marylin looks weak. She ate a good lunch, but was nauseous. A new ID doctor came by, a female whose name starts with an S. She came because Marylin was complaining her IJ line felt hot. Dr. S. checked the IJ line and pronounced it all right. Marylin asked if her bilirubin is up. Dr. S. did not know and added it very well could be since her liver is not functioning normally. The question now is why. I called CT from Marylin's room. She is scheduled at 7:45pm. This is to get her on the schedule. She will be moved up if possible. Her urine hat was overflowing so I dumped it out myself. Marylin's dressings were irritating her; the evening nurse changed them and did an excellent job. The day nurse checked them this morning, said nothing was wrong and did nothing. Marylin ate next to nothing of her supper. She did eat lime sherbet. Her temp is 37.5 (99.5). Marylin got nauseous, but not terribly so.
I called at 9pm. Marylin feels like she has a little temp. I told her even though they messed her body up, don't let them mess your spirits up too. This is where you have to fight. She's hanging in there.
I called at 10pm. Marylin is sleepy, but okay.
I called at 8am. Marylin had a little nausea last night, but was okay other than that. She told Dr. J that her CT was not scheduled until 7:45pm. Dr. J promised to work on it. Dr. T came and said Marylin could go home when her fever was under control. That's sufficiently vague, which is typical here.
I took Marylin's short-term disability form to Human Resources; I forgot to make a copy.
I got a call from Marylin at 9am. She said her CT was now at 10am. I left immediately from work. When I arrived in her room, she was gone. I went to the Radiology holding room and found her there. She arrived at 9:30am. At 10:30am, she was vomiting. Her temp was 37.7 (99.9). A person from Radiology came to take her into the room. I asked what specifically would be done. She said I don't know, they just told me to bring her. I said get me someone that know what is going on. So we waited until 11am. The radiologist came by and drew a picture, which I have. It shows where the bilioma is. I was surprised. I thought the bilioma was subhepatic; it is perihepatic. He explained very well what he was going to do. I wished him luck. I gave Marylin hugs and kisses.
Marylin arrived in her room shortly after 2pm. Everything is fine. The right lateral drain is removed. The radiologist explained the bilioma has two pockets. He drew me a picture to show how the tract goes down from the right lateral drain to feed it. The tube was in the upper pocket, but the lower pocket is the one with the fluid so that's why nothing was draining. I asked the radiologist "Why were you so aggressive in the beginning, then you sat on this for so long?" He was upset, but professional. He gave me a long answer, but not to the question I had asked. I was too tired to question his evasion.
Marylin ate well. She looks a little jaundiced. I asked Drs. G and J about it when they came in a little after 4pm. Dr. G said that could be common after transfusion. She had no jaundice until the day after she received the blood. Her last bilirubin is about where it has been, in the low 2s. Her temp is 37.1 (98.8), BP is 120-130/60s. I asked Dr. G why is Marylin getting another magnesium sulfate IV, oral K x 2 and K IV x 1. He said that is because of the Amphotericin. He was vague as to how long these meds would be run. Dr. G was very happy that Marylin did well in Radiology, the first time actually. I asked Dr. G about putting an IJ line in the left. He asked Marylin if the right IJ line was bothering her. She said it's a little tender. He said he would talk to the interns. My impression is that it won't be put in just yet. I asked about long term IV therapy. He said Marylin would need a Hickman catheter. That would come out once everything was done with the tubes. I would expect that to be March/April.
Dr. Z came at 4:30pm. He said they want to put an IJ line in the left, more to keep an infection from occurring on the right. This will be done tomorrow morning. Marylin's temp is 37.5 (99.5). She appears to be more jaundiced, but Dr. G didn't appear to seem worried.
I called at 6:45pm. Marylin is disappointed because her temp is 38.5 (101.3). I told her this is typical after a drain manipulation. She has slight nausea.
I called at 9pm. Marylin is not doing so good. Her temp is 39.0 (102.0). She is vomiting and getting Cipro.
I called at 10pm. Marylin is feeling better. She vomited a lot. Her temp is 38.1 (100.6). She feels heat just above the site of the bilioma drain; I think that means the bile is moving down the track. It's hot enough that she has an ice pack on it. Amphotericin is going in. I talked to her again about refusing the Cipro. It's causing a terrible nutrition imbalance; she can't keep her food down. Her spirits are better. Dr. W did another blood culture.
I called at 6am. Marylin's night was fair. The bilioma site got really hot, then it started to hurt. The pain hit an 8 or 9 on a scale of 10. She took two T3, which reduced the pain to 3-5. Her temp is 37.2 (99.0). Her mouth is dry. The Amphotericin made her nauseous, nothing new. The nurse ran the saline in at a different rate; it wasn't enough. I said Marylin needs to tell Dr. J(1) no more Cipro and (2) Marylin knows how the Amphotericin can be monitored, she's had it enough and her nurses will have to do it at that rate. Marylin noticed about four inches of bright red blood in the bilioma tube.
I called at 8am. Marylin felt okay, but tired. Her temp is 38.5 (101.3).
I called at 11am. Marylin's new IJ line is in. She was very unhappy; it hurt and the distal port is not working. The right IJ line was pulled. The distal port is an endhole.
I called at 1:15pm. No answer. I called five minutes later. Dr. Z answered. He told me he was suturing in the left IJ line after adjusting. I asked about the distal port; he said it is still blocked. I asked why; he didn't know. I said it's got to be up against a vessel wall, kinked just proximal to the tip or clotted. He agreed it was probably one of those things.
I called at 1:45pm. Marylin's temp is 38.5 (101.3). It went up after the IJ insertion.
I called at 9pm. Marylin's bilirubin is 9.0, up 7 points from when she came in. The normal high at this hospital is 1.4. Dr. G thinks it is from the transfusion and says he is not worried. IV Potassium is started. No magnesium. Nausea and vomiting with the new antibiotic. Her chances of going home this weekend are slim.
I called at 10pm. Marylin is better.
I called several times in the morning. Marylin got barium at 9am, but no CT until 1:30pm. She missed breakfast and lunch; she was not very hungry later. Brian is here. Dr. H paid Marylin a visit, very unusual for a radiologist. Marylin will go to Radiology tomorrow. Her existing nephrostomy tube in the bilioma will be replaced with a biliary drain tube. Her bilirubin is now 10.6. She will have a cholangiogram tomorrow, possibly an ultrasound. Dr. G said bilirubin is increased for three possible reasons: (1) blood she received last Friday, but not likely; (2) right side of liver is shut down, but unlikely and (3) medication driven. If the bilirubin goes up again tomorrow, Dr. G wants her to have a liver biopsy on Friday. Brian will come out tomorrow. Dr. G made a joke of when Marylin will go home. I was unimpressed and said so. He revised to 5-14 days from now. At 6pm, Marylin's BP is 130/70, temp is 37.1 (98.8).
Marylin is telling her callers she is gong downhill, a bad sign. She got IV Potassium once, oral Potassium twice and magnesium sulfate once.
Marylin called me at 9:30pm. She is doing well, but sweating from the IV Potassium. Her temp is good. She is taking her meds and oral Potassium now. She was able to use the calling card for the first time!
I called at 7:30am. Marylin is in good spirits. She had an excellent night. Her nurse lowered the flow rate of both meds. I had Marylin instruct her doctors to write orders for that flow rate. Dr. Z told Marylin he now believes the antibiotics are causing the fevers. No shit. I had been questioning this for the past week.
I called throughout the day. Marylin is doing well. She went to Radiology at 2pm. The upper pocket of the bilioma is reabsorbing on its own. The tube was downsized to a 5F pigtail for the lower pocket. Dr. H told Marylin the right side of her liver is fine and the track is closed. Later, her temp is 38.4 (101.3). Her blood pressure is okay. She has some nausea, slight vomiting.
Marylin told Dr. G she would probably have the biopsy. I was angry. We had discussed it and agreed to hold for now. Her color is better. Dr. G's clinical nurse and Brian both agreed.
I called at 7:45am. Dr. G came in then. He has no new reasons for the liver biopsy, but he still thinks it's necessary. Marylin and I agreed to wait until Monday. If anything goes wrong, the MD service on weekends is poor and maybe the jaundice will improve. Marylin was very vague in the afternoon. I got angry and hung up.
I arrived at 5:30pm. Marylin was out visiting. I came back ten minutes later. We both apologized. Her bilirubin is up to 11.1, alkaline phosphatase is 800. Her hemoglobin is 10.1. Her color is okay, but not as good as I was led to believe. Marylin is eating well and walking a lot. Magnesium sulfate IV is going in now. Marylin told me that when Dr. Z put in the IJ line on the left, Dr. S had to tell him how she did it. Evelyn came today from 2-5pm. She will come again on Monday.
I called at 8:30pm. Marylin is doing well. She has started a new med, name unknown. I asked her to find out tomorrow.
I called at 9:30am. Marylin is doing well, but sleepy.
I called at 7:15am. Marylin doing well now. She got Imopen earlier. She had some nausea, no vomiting. Ice chips relieved the nausea.
I called at 9:30am. Marylin is eating breakfast. Drs. Z and S came by. They said the meds were switched because the new med is easier on the kidneys. Candida cultured out earlier this week in the bile only.
I checked Amphotericin B at work: Nursing 91 Drug Handbook: Stop Amphotericin if alkaline phosphatase or bilirubin becomes elevated. 93 PDR: Amphotericin is detected in urine for at least seven weeks after being discontinued. Amphotericin should be discontinued if alkaline phosphatase and/or bilirubin levels become elevated. Acute liver failure is rare, but possible. The effects of Amphotericin are felt up to fifteen days post termination.
I think the Amphotericin should have been discontinued sooner; no one said it might be hepatotoxic. Diflucan is the new med; it is as effective, but may be less toxic. Why didn't they use this first?
I arrived at 12:30pm. Marylin is doing well. No change in color. I brought her a cheeseburger from Wally's. She ate well. I had to leave at 1:45pm to go to work. I got back at 4:45pm. Marylin is good. Her bilirubin and alkaline phosphatase are up from yesterday. Marylin and I agreed to the biopsy. I said I would be here. We walked and played cards. She had some pressure on her stomach, which was relieved by ginger ale. We were told by Marylin's nurse that the Amphotericin was last given on Thursday. Diflucan was started yesterday. Marylin said last night IV and oral. Diflucan is taken orally once every 48 hours. Dr. G told Marylin no Hickman catheter would be necessary. Does this mean she'll go home or get a subclavian or other site? I left at 7:15pm.
I called at 9pm. Her temp is 37.9 (100.2). Marylin took a Tylenol with her meds. She had some nausea. The smell of mushrooms and onions bothers her again. This worries me. This happened when her liver began to fail early last year. Marylin was tired. I asked her to call when she awoke. She didn't. I hope she is okay.
Overall today, Marylin slept a lot and ate well. No temp until tonight. Her spirits are good.
I called at 7:45am. Marylin is sleepy, but good. She has some nausea from Imopen, but otherwise is fine. She has no temp. She got Diflucan.
I called at 10am. Drs. Z and S came by. They said Marylin was probably tired because her liver was not doing well. She ate eggs with onions and green peppers, cocoa and milk. Her temp is good.
I arrived at 12pm. She is more jaundiced. The biopsy will be tomorrow at 9am. Her nurse brought a biopsy tray in the room, apparently when Marylin was asleep. The nurse said sometimes the doctors like to do the biopsy in the room. Marylin and I agreed to refuse a blind stick. Marylin is feeling decent but tired. She ate a kiwi. Her bilirubin is similar to yesterday, in the 13s; alkaline phosphatase is more elevated. None of this is surprising. Dr. J told Marylin they'd treat her differently depending on if the problem is medication driven or if the liver is rejecting. If the latter, Marylin will receive IV prednisone.
Around 2pm, Marylin's IJ line started to leak at the surface. Dr. Z came and adjusted it; it didn't work. Marylin said she did not want him to put a new line in. I felt sorry for him; he hung his head like a small child and said okay. Dr. S changed the tube with a wire. It went so smooth, Marylin was not even aware it was changed. It worked fine. Marylin had to wait two hours for the results of the chest x-ray to see if the tube placement was good for final suturing.
At 6pm, her temp is 37.2 (99.0), BP is 117/74. Marylin is doing well. She is eating well.
At 6:30pm, Dr. S came and sutured the IJ line.
I called at 8pm. Marylin is doing well. Some med is running in now, name unknown. I had to call her nurses' station because her phone was off the hook again. There's not even a base for it to sit in; there never has been. Her Potassium was 2.3 (normal low at U of C is 2.5), so she will get some potassium.
I arrived at 7:30am. Marylin is nervous. Her skin color is about the same, but her face looks less jaundiced. She slept well. Her IJ line is working well. At 8am, Dr. T came in. He doesn't think she will need the IJ line any more. Candida has not cultured out of her blood for at least ten days and less Candida is culturing out of the bile. He did not seem to think the Amphotericin caused the jaundice or that it should have been discontinued sooner.
Marylin did fine for the liver biopsy in ultrasound. Dr. G came just as they were starting the stick. He held Marylin's hand throughout the procedure. Personally, I think all he wanted was that piece of tissue, the rest was for show.
About 5pm, I ran into Dr. G by the elevators. He said the biopsy was inconclusive because the tissue sample was too small. He thinks Marylin is going into rejection and she will have to be switched to FK 506, an experimental immunosuppressant. Another biopsy tomorrow, in her room, by GI Services under ultrasound guidance with a 14 gauge needle and Versed. Marylin didn't take the news too well; I didn't either. Dr. H came and checked the drains and to see how Marylin was doing. I told him what Dr. G said and Dr. H felt really bad. I thanked him for his concern. He said until all that gets taken care of, Radiology will hold.
I called at 7pm. Marylin said Dr. G came back to see if her spirits were okay. I don't trust this man. Dr. Z came by and said her bilirubin is 13.7, but the Potassium, white blood cells and bands were looking really good. She got supper already and ate well.
I called at 8:45pm. Marylin is tired and depressed. She has been fever free for over four days.
I arrived at 7:35am. Dr. G, all smiles, passed us on his way down the hall. Dr. J came in. I asked her about IV prednisone versus FK 506. Dr. Johnson said the difference is between acute and chronic liver failure. Marylin is nervous, but doing well.
Dr. G came in shortly after and said they would be starting soon. He had an unlabeled syringe in his hand, which he said was Versed. No SaO2 monitor was used.
About 9am, the nurse came to the waiting room to get me. I did not see the doctors pass down the hall. Marylin is in a lot of pain. Dr. B came by to see her. I said she was sleeping. He seemed genuinely concerned. Lora and Chris both called. I left at 1:45pm. I saw Dr. R in the elevator. She was sorry to hear Marylin was still in the hospital.
Dr. G called me at home at 4pm. He said she has what is called vanishing bile ducts, a form of rejection, treatable with the FK 506. I asked about the success rate of FK 506. Dr. G said it has a very good success rate. I asked how long would it take before Marylin got better. He said a week or two. I asked when she could go home. He said the end of this week.
I called at 6pm. Wendy was there. Marylin will have an EKG as part of the protocol.
Dave called me from Northwestern National Life. He can help manage and keep our health care dollars down. I said that's great, but I wish you would have called about thirty days sooner.
I called at 8:30pm. Marylin is tired, but doing well. Wendy was there and brought her three cabbage rolls. She ate all of them along with an ice cream bar. Her temp is good. I asked her to get from Dr. G exactly what meds and doses she'll be on so I can arrange all these things.
I called at 7am. Marylin was doing well. She told me not to call her and waste our money.
I called at 3pm. I asked Marylin if I could take a day off from visiting and get some sleep. I was really tired. She was disappointed, but she understood. The FK nurse came to see her. Marylin had to sign a consent listing various possible complications.
I called at 5pm. Dr. G has not stopped by yet. We want to know when Marylin is coming home; if it's not Friday, I want to know why. The bilirubin is in the low 15s, the alkaline phosphatase is down. Potassium, magnesium, PT, PTT and hemoglobin are all good. Her appetite is good. Rich is there.
I asked Marylin to get copies of her pathology reports from her liver biopsies. Her nurse said Marylin has to get permission from her doctor.
I called at 7:45pm. We talked a long time. Marylin's appetite is good. Her EKG is fine. Dr. S came in while the EKG was being done. When the tech was finishing, Dr. S noticed he had the right patient but the wrong name. She pointed that out to him. He verified that this was Marylin's EKG. Marylin had a pregnancy test as part of the FK protocol, even though no one made us aware of this prior. Dr. G came by at 5:30pm. He said that when she leaves will be dependent on her lab values from this point on, not at all what he said before. There is a possibility of Friday. Marylin will have a daily draw. Dr. Z will check her on the weekend and will be in touch with Dr. G. Marylin can go home over the weekend if her labs are good. Otherwise, we wait until Monday. She'll have weekly clinic visits for a time. Dr. G said Marylin would go to Radiology tomorrow; the bilioma tube will be removed. He also said Marylin would definitely be having a biopsy in about one month; Marylin said it is in the copy of the protocol she has. Yesterday, Dr. G told me maybe. Dr. G said there was no problem with Marylin getting a copy of the two pathology reports.
I called at 6:45am. Marylin was doing well in general and with the FK; no side effects yet. She slept well. I stressed to her that it wasn't likely she would see any major changes on the labs today. I said I had a good feeling she would be home this weekend.
I called several times throughout the day. Evelyn came to visit. I told her to work on Dr. G about coming home this weekend and, if need be, how will he justify this to the insurance company. And if they don't pay, we don't pay either. Spirits, appetite and temp are good. She is supposed to have a CT, but as of 2pm she had not had any barium.
I called at 5:30pm. The bilioma tube was removed. The CT showed the upper pocket was still there but is reduced in size. Marylin is worried nothing is being done about it. I said her body is healing itself and they are doing the right thing in leaving it alone. She had to beg Dr. G, but he said she could come home tomorrow as long as she doesn't spike a temp tonight. I told her to do whatever she had to do to keep her temp down.
I called at 8:40pm. Her nurse answered. Marylin got her Immopen and it made her vomit, but her temp is good. No lab results yet. Her nurse will get them. At 8:45pm, Marylin is better. Bilirubin is in the 14's, high but down, Alkaline Phosphatase and GGTP are down. She had to vomit again. At 9:15pm, she is tired, but okay.
I called several times today. At 7am, Marylin felt fine. At 9am, Drs. S & Z came in and said Marylin had to be on oral antibiotics for a day and could not leave until tomorrow. She told them what Dr. G said yesterday and to get out and talk to him.
Around 1pm, I found out Marylin can leave!!!! I left work at 3:30pm. I drove thirty miles to pick up Kalen, then 45 more miles to pick up Marylin. We left at 6:30pm. She told her nurses. No one helped us out. It was like they were happy to be rid of us. Marylin was very tired. We celebrated Christmas and she went to bed. She weighs 86 lbs.
So, that covers that. Read on for the followup treatment in Radiology for the next 5 1/2 months.
I got a call from Dave from Northwestern National Life. He said Northwestern cannot resolve my complaints of medical necessity. He suggested I go through the hospital grievance committee. He wants to keep following Marylin's case; I said fine. I feel for all the good he's done so far, it won't matter much.
Evelyn took Marylin to the hospital. She had a CT with barium and infusion (scheduled) followed by clinic. She did not get home until 4:30pm. She was told the CT was good; the larger bile ducts at least were open. The bilioma has reduced to approximately 1 cm in size. Bilirubin is in the 16's and creatinine is up. Dr. G said the creatinine is up because Marylin is not drinking enough fluid, although I feel the primary cause is the FK. All labs were done at the hospital and Marylin does not know any other results. Dr. G increased her FK from 6 to 8 mg bid and to have another FK level drawn Thursday, another on Monday with her routine labs and that she may have to go to clinic next Tuesday and a possible biopsy in the very near future. He also put her on the transplant list, even though he doesn't think she'll need another one.
About noon, Marylin got a call from from Radiology at the hospital. Dr. G spoke with Dr. H and they want her in for a dilatation. Marylin called me and I immediately called Dr. H. It's not a dilatation. Marylin's liver function tests may be going up because the distal portion of the biliary tree may be blocked. Marylin will have a cholangiogram and possible tube change. I scheduled her for 8am tomorrow and stressed to Dr. H that this will be done on an outpatient basis. At first, he was hesitant. I said you don't understand; she's coming home and she'll be fine.
We arrived at Radiology at 7:30am. They gave us papers that said "Dilatation of ducts by CT". I thought this was the procedure. Marylin changed her clothes, but nothing else was done until we talked to Dr. S, after waiting for an hour. He explained that the dilatation of ducts by CT was the diagnosis, and Marylin would have a cholangiogram. I stressed to Dr. S that Marylin was going home today. Marylin's cholangiogram was fine; a wire was run through the tube to insure patency. Her wafer and dressing was changed. She got Cipro IV during the procedure. Unfortunately, we still don't know what is causing the liver function tests to remain elevated.
We went to the Pancake House in Dolton for a late breakfast. Marylin ate a lot; she had two poached eggs, four pieces of bacon and a few bites of my pancakes.
We arrived at Radiology at 7am for a dilatation. Remodeling had just begun on the waiting room. We waited until 8am. An IV was started, KO, and Cipro. Dr. H walked Marylin into the room himself. I asked him why Marylin's biliary drain could not be capped off; his reply was that her bilirubin was too high. I asked him if they would dilate. He replied he would have to look first. The stenotic areas were open on 2/3/94. As it turned out, he did have to dilate, using a 7-2 MT balloon. He upsized the tube to a 10F. The procedure lasted about 1 1/2 hours. Marylin got 4 mg Versed total. We left one hour later.
I talked to Crystal from Northwestern National Life. On Marylin's last stay, the hospital gave Northwestern a choice: accept a $4000 discount, no audit or an audit. Northwestern chose the audit. Crystal told me she had a very detailed itemized account. I asked for a copy. She said I had to get it myself from the U of C. I pointed out to her that I am trying to work with her and save us all money; most of the money saved will be Northwestern's. She said she knows, but that's their policy.
I was unable to get through to the Patient Accounting department.
Evelyn took Marylin to clinic. Marylin is doing well. She went to Radiology to have her drain capped off; nothing else was done. Dr. G took her off Prednisone completely. No word on a biopsy. She is supposed to return to clinic in three weeks, repeat usual labs on 3/17.
I called Radiology and set up the next dilatation for 3/31/94 at 8a. I was told to flush the tube every day now that it was capped off.
I spoke to Greg in Patient Accounting. He was very polite and said he would send a detailed bill.
Several hours after taking her meds in the morning, Marylin developed a lot of itching on the palms of her hands and the soles of her feet. There are one or two hives on the meaty part of her left thumb. Her feet got slightly red and a little puffy. My mother went to Walgreen's and got Marylin some OTC Benadryl. The symptoms cleared up about one hour later. I thought it might be the Cipro. Marylin did not take her evening dose of Cipro. The symptoms began right after she took vitamins in the evening, although the symptoms were not as severe. Benadryl relieved the symptoms.
I called Dr. G, explained Marylin's symptoms and our treatment; I asked for advice. He asked about food. The only thing new was chili powder. He suggested that as a cause for her hands, but could not explain the feet or the recurrence. He said Benadryl is the right choice and, as long as there are no other symptoms, treat the same way.
Marylin was fine until later in the morning, after taking Cipro. The left side of her face was blotchy along with blotches on her legs, with itching. We agreed for her not to take the Cipro for one day.
I finally got through to the Physician Group office, although it took me four transfers to get to the person I needed. I was told they would send a letter to Northwestern explaining why Dr. P should get more money, but if we don't start sending them $50 per month, they will turn us over to a collection agency. They were polite.
I called Jim at the Employee Assistance Program. He said he could do nothing, but suggested I speak with Dr. P personally. If that fails, I should write a letter to the Physicians Group with a copy to Northwestern and Human Resources at St. Margaret's.
I spoke with Crystal from Northwestern. I complained about Dr. G charging $105 for giving Marylin Versed IV pre-biopsy. She said I would have to resolve that with the hospital.
Marylin ill today. She vomited five or six times. She opened her bag to drainage. Her sinuses have been irritating her the last few days. She got feverish in the morning; temp was 99.8 degrees. At 2pm, temp was 101.6 degrees. She had taken Tylenol but couldn't keep it down. I got home at 2:30pm. I put a cold cloth on her head and changed it every few minutes. She was able to sip cold water.
I called the Pharmacy to get a refill on her FK. I was told that prescription had expired. I called the Clinic who told me to call the nurse clinician. She said she would take care of it and the FK would be there for me Thursday morning.
I talked to HCX, an auditing group that was assigned Marylin's case by Northwestern. Her case has not been assigned yet because they do not have her signed consent to proceed with the audit. The audit will not cover medical necessity or usual and customary charges. That was not much help and I said so.
At 7pm, Marylin's drainage bag opened up and bile got all over her pants and underwear.
At 9pm, her temp was 101.9. She took Tylenol, which dropped her temp to normal.
At 6am, her temp was 99.1. At 1pm, it was 97. At 3pm, it was 101.8. She took Tylenol. At 5pm, it was 101.9. At 6:30pm, it was 100.4. It was normal less than one hour later.
Temp at 5:30am was 97.
Arrived in Radiology at 7:30am. Temp then was 96. BP was 96/52. IVs started: KO and Cipro. Dr. B took Marylin into the room at 8am. She was out at 8:45am. She was dilated and the tube upsized to 12F. She got 3 mg of Versed total. Dr. B did the prep, Dr. S did the rest. Marylin stayed for an hour. Her temp went up to 97. I picked up her FK and we left.
She got chills, but had no fever. At 7:30pm, she got a sharp pain in her left side. She took two Tylenol 3s and fell asleep. The pain was gone. Around 9pm, she got a fever. Since she just had two Tylenol 3s, I gave her a cold cloth with ice for her head and cold water to drink. She feels better, but is still warm, although not as much.
Temp good. Some pain at site, but no more than would be expected. Weight is 84 lbs. Biggest problem is occasional severe heartburn. Hopefully this will clear up.
Better today. Temp good. Some pain at site, but less than yesterday. One episode of heartburn, corrected quickly by Tums. Marylin ate well and seemed more like her old self. She looks so thin!
Marylin holding her own today. Some ear pain and slight nausea. She vomited slightly at my parents. Temp good. I changed her dressing; the site looked good. Her biggest problem is her attitude. It feels like she has given up and will not fight to live. We talked a long time about this.
Marylin went to Clinic. I got a call from Dave at Northwestern National Life. He will close Marylin's file for now. I expressed to him my disappointment with Northwestern's unwillingness to do a medical necessity audit. He will check into this and call me back. Marylin very good. Weight = 80 lbs.
Marylin got a call from the nutritionist. Marylin is to eat a high fat diet. She is to track her caloric input and send it to the nutritionist on Monday. Marylin slept most of the evening. She ate well, but I was concerned her fluid input was insufficient. Ears still plugged.
Weight = 83. Ate well. Some itching off and on. Sinuses and ears plugged. Her tube began to leak bad around noon. The large distal portion is loose; I locked the tube and it was fine.
Marylin called me at 8:30am to say her tube was leaking again. Not bad, but still leaking. I had her come in to SMH and Judy and I checked her out. Judy adjusted the locking mechanism. The tube still leaks but very slightly. Marylin's ears are really plugged. She called the nurse clinician. She said it was okay for Marylin to see an ear doctor here. Marylin and I went to see Dr. P, who called Dr. P and got her in for an appointment in two hours. Dr. P told Marylin she has a fluid buildup with possibly a small infection. He prescribed Amoxycillin and Dimetapp. He cleared this with the nurse clinician prior. Marylin hit 100.3 at 3pm. She is 98.6 now at 9pm. Weight = 83. Marylin lost her appetite, but has had 4 Ensure Plus. Her spirits are down but not too bad. Wednesday April 20, 1994
Slight leak once. Temp good. Weight = 82 with robe. Coughing slightly better. Spirits way down. Had a long talk with Marylin. I said I would not support her giving up on life, on resigning herself to a slow death. I will help any way I can, but I need to know what is going on with her. I am tired of not knowing. She was upset, naturally. We talked later and I believe our situation improved.
Marylin doing well. Weight = 82 nude. Ate well. Some itching. The dietician called Marylin and said she is eating very well and should be gaining weight soon. When she goes in again for clinic she will see the dietician also.
Marylin and I arrived in Radiology at 7:05am. Dr. S came out to talk to us. I asked him to talk to me after the procedure; I wanted to know the status of the stenosed duct and when the tube would be removed or downsized. He told me then the duct was responding well. He also said that the stenotic segment responds to the dilation and the presence of the tube by becoming fibrotic. It gets tougher and each successive dilation becomes more painful. Marylin went in at 7:55 and was out at 8:50.
I talked to Dr. S on the phone after. He said the stenotic segment is not responding like he wanted and a stent may have to be employed. I asked what kind. He replied a Palmaz since the segment is short. He would talk to the transplant surgeons. She only got two of Versed. Marylin talked to Dr. S about the tube leaking; he did not seem concerned and replaced it with another Cook 12F. For an unknown reason, Dr. S wants Marylin connected to drainage until tomorrow morning. We got to leave at 10am. We ate a big breakfast. We went home. As the Versed wore off, the pain increased. So did the itching.
Marylin doing well. Some pain at the lesion, but this is normal. I talked to a rep from J & J, the company that makes the Palmaz stent. I will be sent literature on biliary stents and the phone number of the Dr. Palmaz's nurse. I also spoke with a Schneider rep who distributes the Wall stent and a rep from Cook who distributes the Gianturco Z stent. The first two reps were very helpful. The Cook rep was worthless. The overall consensus on these stents is that they are not indicated for a problem like Marylin has.
Marylin went on a three mile bike ride before I got home. We did another two and one half miles together. Weight = 83 nude.
Weight = 84 nude. Marylin good until later in the afternoon when she developed a runny nose and sneezing. No temp. Looks like she has a cold. She rode four miles on her own.
I spoke with someone in Human Resources where I work concerning questioning medical necessity of some things during Marylin's long stay. I gave her some details and also mentioned whom I had spoke with and the obstacles I had confronted. She said there was nothing she could do. I said I would go to the plan manager. If that failed, I would get a lawyer and detail the lack of help I had received from Northwestern and SMH. Suddenly, she remembered she was seeing someone today who might be able to help. I said fine.
Weight = 84 nude. No temp. Pretty good day; some itching. Marylin and I celebrated her first anniversary of her liver transplant by going out to dinner. She ate a big meal, then a big dessert.
Weight = 84 nude. Some itching. Marylin rode 3 1/2 miles on her bike. No fever. Spirits slightly better.
Weight = 84 nude. Some itching. Kept very busy. No fever. Spirits good. Great lab results from last Thursday. HCG is negative. Bun = 31, creatinine = 1.5. Bilirubin is 2.0.
I spoke to someone in Human Resources again about questioning medical necessity. She spoke about two weeks ago to someone from Northwest National Life. He is looking into it.
Marylin very good. She rode ten miles. Very hot today. She ate well. She was tired and fell asleep at 7pm. Took Benadryl once; no effect. Weight = 83 nude.
Marylin very good. Some itching, no Benadryl. Weight = 83 lbs nude. Left ear plugged, no pain. Marylin went to Clinic. Dr. R saw Marylin. Apparently he is leaving too. The good news never ends.
Marylin good, except left ear is blocked. She feels pressure, but no pain. A light period began today. Weight = 83 lbs nude. Marylin went to her first liver transplant support group in Merrillville. She was very happy with it.
I called Radiology at 10am. I identified myself and asked to have Dr. H call me at work. I was told Dr. H is off this week. I asked if she would have Dr. S call me instead. I never received a call. I asked in Human Resources if there was any success with Northwestern about questioning medical necessity. At first I was told yes, then no.
Marylin good. Weight = 83 nude. Arrived in Radiology at 7:10am. The lights were off and no one was there. Marylin went in at 8am. I spoke with a blond female doctor first, then with Dr. H. I asked about a stent; he said maybe. I said Wall stents were contraindicated by the manufacturer for benign biliary stenoses. He replied that reps would say anything to sell their product. I said you're not listening; the rep said don't use it. He said he would take a look and may or may not dilate. Dr. H and I exchanged words in the Radiology holding room. But Marylin never got her stent.
I was called back to Radiology at 9am. Dr. H came out shortly after. He said all he did was a cholangiogram and change the tube. He will speak with the transplant surgeons. This was supposed to have been done before this visit, but apparently was not. He said he did not want to put in a stent and burn any bridges. We made an appointment for June 27th. He said possibly he would downsize the tube to a 5F and see if the stenotic segment would hold. If a stent is placed, he wants Marylin to stay most of the day to make sure she is okay. He also said another option would be a plastic stent placed endoscopically and replaced every three months. Neither Marylin nor I like that option.
Marylin and I left at 9:30am.
I spoke with Human Resources. Northwestern has not got back with her yet. She told me to be patient. I reminded her it's been at least a month and I still have no answers. She said these things take time and Northwestern is working on it.
Marylin very active today. Weight = 86 after supper. She took one Benadryl once.
Marylin called Dr. H at 8:30 & 11am to find out what will be done on her June 27th appointment. We are leaving on vacation Sunday and Dr. H does not routinely work on Saturday. He never called or left a message.
We arrived at Radiology at 7:45am. Dr. H came over and showed me the stenosis is in the left hepatic duct just as it joins with the right hepatic duct to form the common bile duct. A stent is this area would require a stent in the right duct so as not to occlude it. It made me wonder why he was ever talking a stent in the first place. Marylin had 1 mg Versed and did well. The tube was downsized from 12F to 5F. Dr. H set us up for next Tuesday at 11am. If the duct holds open, the 5F tube will be removed. He did not seem happy with the results, but I had the impression they were acceptable. He came to get me personally when the procedure was over. She was given a scrip for a new antibiotic Dr. H said is more biliary specific: Floxin.
Weight = 84 nude.
We arrived in Radiology at 10:45am. Marylin went in at 11am. She had no IV. A cholangiogram was done. She said the tube was removed without a wire. She got a prescription for five days of Floxin. Dr. H said after that the left duct doesn't look any worse. The way he said it makes it sound like it isn't too good, although he did not say that. He told Marylin that if the left duct restenoses, she would need stents from a two-sided approach.
We ate at Maury's and went to clinic. Marylin saw a resident and the nurse clinician. Dr. B never saw her. Her Prograf was reduced to 5mg. The Actigall will be maintained because her ALT and AST went up since her last labs six weeks ago. She will need to have her blood retested next week and the week after. If it is satisfactory and she continues to do well, she will be able to return to work three days per week beginning August 7th. She will also have a clinic visit prior. While there, we saw Dr. C go by. Marylin said he was the one who finally listened to her about the pain before the bilioma was discovered.
This ends the first post transplant experience.
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