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Marylin complained of abdominal pain when she woke up. She said it started around 3am. She went to work.
I took my son to school, got my truck emission tested and went shopping. I got home around 11am and found Marylin lying on her bathroom floor in severe pain. She wanted me to call Dr. M so he could come and give her a pain shot. Instead, I told her to get dressed; I was taking her to the Emergency Room.
We arrived in ER about noon. The place was a zoo. It was half an hour before Marylin even got on a cart. An ER doctor came to see her and she had labs drawn. I called Specials and asked them to find Dr. M and come to the ER to see Marylin. He did and ordered a stat liver ultrasound. I called Dr. D who got her in right away. Dr. D left, turning Marylin over to Dr. K. It turned out that Marylin has what appears to be a gallstone. This goes along with her symptoms. Marylin had a chest and abdomen flat and upright. She got Rocef and Unasyn for antibiotics. Dr. K spoke honestly with me, saying that Marylin needed to go to Chicago. I talked to Marylin. We both felt the fear.
Marylin didn't get to her room until about 5pm. I left not long after. I called Marylin twice that night.
I called Marylin at 7:30am. She was okay. I went to see her right after. I spent most of the day with her, off and on. I arranged a family absence, taking days as necessary rather than being off 12 weeks in a row. Marylin was okay with the pain until later in the afternoon. She got codeine IM for pain. She got Unasyn several times throughout the day.
About 11am, Dr. M came to see me. He had just spoken with Marylin. He said there was really nothing that could be done at the local hospital and recommended that Marylin go to Chicago. I was scared, but agreed. He called Dr. B who made all the arrangements.
I called CCN to inform them Marylin had been admitted to the local hospital through the ER. I spoke with Maria. She told me I would need to call when again when Marylin got to Chicago.
I left Marylin at 2:30pm to pick up my son. I called her several times. Kalen spoke with her. I was scared and so was Marylin. Chicago was full, so Marylin had to wait. About 8pm, her nurse called to say Marylin had tried to call, but couldn't get through. She had left ten minutes ago by ambulance.
I was going to call Marylin at 9:30pm. I figured it would take that long to get her settled. She called me at 9pm collect. I got her room and phone number and called her right back. She's scared, but okay. She says she'll be having an ERCP tomorrow. We talked about fifteen minutes. She was tired so I let her go. I said I would be there by 10am tomorrow.
As I was going to sleep, I had a good feeling about this stay. Part of the feeling was that I had to trust more, a difficult thing for me to do.
At 8am, I called CCN to inform them Marylin had been transferred. No one was there so I left all the info they required. I gave them my home phone so they could call and confirm. There was no message from them when I got home.
I took off today. I got to Marylin's room about 9:15am. I was really scared once I got to the parking lot. Marylin was mad at Dr. B who said she could not take her Prograf from home, but had to use the hospital's pharmacy. I later spoke to Dr. B, a young pleasant woman, and explained to her why we wanted to use Marylin's own meds. She agreed, under the condition that I give the Prograf to the nurse who will dispense it to Marylin. I did that right away.
When I got there, there were no orders in Marylin's chart for what procedure she was going to have. About 10am, a cart arrived. Marylin was going to Radiology for a PTC and biopsy. I was really upset but stayed cool. I remembered the way. I met Dr. S again. I helped wheel the cart to the procedure room and went up to the waiting room about 10:30am. At 12:15pm, I was paged to go back to the holding room. Marylin was out. She had a fever. She was in pain. There was an 8F biliary drain in her right side with leg bag attached. Very little, if anything, was draining. In her room, Marylin was shaking. Dr. B came in and offered her Demerol. Marylin refused. Dr. B said to cover Marylin. I said don't. Her temp will spike at least two degrees in an hour if you do. Dr. B covered Marylin and her temp went from 101 to 104. Marylin continues to get Unasyn. I gave her ice bags on her head. I gave her ice and water to drink after I got permission. I stayed with her until 4pm. Marylin did not want me to go. I wanted to stay, but being with someone you love and not being able to do anything is so emotionally draining.
I hooked the printer up to the new computer and entered Marylin's labs from Monday through Wednesday of this week. I printed them out to take to Dr. B.
I called Marylin at 8pm. Dr. C came to see her about 6:30pm. He said 1) the biopsy showed chronic rejection. I asked Marylin what will be done for this. She doesn't know anymore than she told me. 2) She will go back to Radiology Monday because her tube is not draining. According to Marylin, they will do another PTC to assess liver failure. I wonder if Marylin has this straight? Marylin was upset because she rang once for a nurse and no one came. I told her to ring again. She is bored, lonely and scared. So am I, lonely and scared anyway. Tears come to my eyes as I type this. She did not want to talk anymore.
I called Marylin again at 9pm. Her temp is down, but she does not know to what. She is tired and did not want to talk.
I called Marylin at 8am. She was better, fever down, but her mouth was very dry and her lips were chapped. It made it hard for her to talk. Marylin was tired. She said she had her Prograf level done. She said there was very little coming out of her biliary drain. We talked about 10 minutes.
I called Donna and told her everything I knew of Marylin's condition. I asked Donna to please check if Marylin has 4 sick days she can use next week prior to her starting her short term disability.
I called Marylin at 12p. Rich & Evelyn had come to see her. She was tired. Dr. C had come to talk to her. He said the results of her liver biopsy show she is having chronic rejection. He said they may up her Prograf, depending on what the level shows. He said she may be started on Cell-Cept, another immunosuppresant. It was scary to read about it in the PDR. I looked up Prograf and it sounded even worse. So I promise to try and stop worrying so much. Marylin added that Dr. C said she would be going back to Radiology Monday to see if they can flush more gravel and sludge out of the bile duct.
I got to Marylin's room at 3:15pm. She had a headache and was tired. Last night, they gave her antibiotics and very few other fluids. Her BP bottomed out. It is fine now (112/80). Her temp is up again to about 101. She had a headache. Two Tylenol helped that out. Marylin is on a new antibiotic: ceftizoxime sodium. She said she ate a good lunch, but ate very little for supper. She had soup and a Sprite. She had a normal bowel movement last night/this am. Her abdomen is swelling somewhat and getting tense. It looks and feels to me like moderate ascites. Marylin insists the same thing happened four years ago when she had her first biliary drain inserted. I checked the notes for that year and could find no mention of it. Marylin walked the halls with me.
There is a little gravel in her bag, along with some bile. I squeezed the bag hard with my fingers and found I could crush the gravel.
I stayed with Marylin until 6pm. She was mad I was leaving.
I called Marylin at 9:30pm. I had already called Mike & Lora, Gerry & Greg and Betty Lipton. Betty called right after I spoke with her. Marylin is just tired. No apparent fever. She said she has passed gas and the tightness in her abdomen has reduced.
After I left, she had trouble breathing. She said her SaO2 was down to 60. This is hard to believe, but it is possible. She was placed on 3 liters 02 and had a portable chest xray and EKG.
I arrived at 9:15am. Marylin okay. Dr. C had already been to see her. Marylin knew nothing. I asked Marylin's nurse to page Dr. C; she said she could not page an attending, but could page another doctor.
Marylin and I walked to the reception area by the elevators on 5NW. Dr. E came to see us there. He said Marylin does have some fluid in her lungs. He is unsure why. Marylin's creatinine is up to 3.0 (normal high here is 1.4). Again, he is unsure why. He is concerned about pre-renal azotemia. He is not certain that the swelling in Marylin's abdomen is ascites. He is much more concerned about the renal function. He was unsure if Marylin was going to Radiology tomorrow, although Marylin is convinced she is.
Dr. C beeped me about 10:30am while I was in Marylin's room. He struck me as a very nice man and he made me feel at ease. He still does not know the Prograf level. He explained CellCept. I said I could find no literature on using CellCept in conjunction with Prograf. He said the literature is just coming out now, but it has been done before. He said the results of the liver biopsy showed she definitely is in chronic rejection at this point. It's really not bad right now, but could be later. She has very little scarring, which is a good sign. Marylin will not be going to Radiology tomorrow. I detailed my concerns about Marylin's known stenosis. He is not in favor of a Wall Stent. I detailed my problems with Dr. H 4 years ago. Dr. C said Dr. H has left our institution and did not seem sad about it. Dr. C said he is uncertain at this time what will be done for Marylin. He will discuss her case with the other physicians tomorrow. Dr. C said that it is possible Marylin will need a second liver transplant if this medication fails. It seems like an outside chance, but he would like her name placed on the transplant list. He said he discussed this with Marylin already. I agreed.
I gave Marylin a sponge bath, shaved her legs and washed her hair. She felt much better. We spent the day watching TV and talking. We walked the halls some. After sitting outside in the reception area about 15 minutes, she did feel the need for O2 again. She had blood drawn for culture and a urine sample for culture.
I left Marylin a little after 4pm and called her several times during the night. Late in the evening, she needed Tylenol 3 for pain. Otherwise, she was doing good.
I called Marylin from work. Several people here talked to her. Later, Cindy talked to Marylin, then me. Marylin is angry because she has to get Potassium IV because that's obviously low.
Jan and I arrived in Marylin's room about 5pm. Marylin's day had been relatively uneventful except for the Potassium. Jan and I went to the cafeteria. We brought our food back up. When we got back, Marylin said Dr. B had just been to see her. Marylin's bilirubin is up to 15 and would be going to Radiology tomorrow to see what was going on. Marylin and I were very upset. Marylin did not look that jaundiced. Later, I saw Dr. B. She could only confirm what she had told Marylin. I was worried that either Marylin's stenosis had closed or she had gone into liver failure. Bile is draining much better through her drain. There is less gravel and the bile is a normal opaque green. Marylin was given a subcutaneous injection of Vitamin K, which means her Prothrombin time must be high.
Marylin said she walked during the day, but only once. She and I walked once. Marylin is scared. I had stressed to her yesterday to take an active part in her care and to ask Dr. C questions instead of waiting for me to do it. She didn't. I wrote some questions down for her to ask with room for her to write a response.
I called Marylin later. She was still worried. So was I. I told Marylin I did not think much would happen in Radiology tomorrow and I would be at work. She was angry and hurt, but I stressed to her that I needed to save this time in case things got bad. She was crabby because she was in pain. She wanted a Tylenol and the nurses had a problem patient and did not respond to her. She did seem slightly short of breath, but once she calmed down she was fine. Her Prograf level is actually slightly high. She will be reduced from 2mg twice a day to 2mg in the morning and 1mg in the evening.
I talked to Donna this morning about Marylin's sick days. I called CCN about Marylin's admission. Linda said CCN already had that information, but did not give me a confirmation number.
I called Marylin at 7am. She was not doing too bad, more scared than anything else. She was really upset because she never got her Tylenol 3 last night. I told her she would have to complain before I would. I asked her to have her nurse call when she is going to Radiology. Her nurse called about 10am.
Marylin called me before noon to say a Dr. L did a cholangiogram on her. Apparently, Marylin had some small bleeding from the liver biopsy. A blood clot was obstructing her bile duct, but was resolving on its own so no intervention was required. We were both very relieved. Marylin complained to Dr. B about her being ignored yesterday. An administrator and patient rep came to see her. Marylin said her care has been excellent since.
I called Marylin several times throughout the day. She is better. She had to get magnesium IV, which burns and makes her body feel hot. This upset her.
I called Marylin in the morning. She was getting her last IV. She was being switched to oral antibiotics. Her creatinine is coming down nicely; 2.0. We don't know any of her other labs. They are not kept in her chart, but in a separate chart at the nurses station.
I got to Marylin's room about 5:30pm. She got hard tortellini for supper. I said she should complain, but she didn't want to. No more IV meds and no more oxygen. Dr. C said she should be able to go home tomorrow. I brought Marylin's coat, shoes, pants and top. I stayed until 7:30pm. Marylin and I walked to the coffee shop downstairs.
I called Marylin later and she was doing okay.
Marylin and I talked together several times throughout the day. She had to wait for Dr. C to see her before she could be released. She called me at 2pm to say she could go. I arrived at 3pm. Dr. C was there, but more to say 'see you later' than anything else. Marylin was packed and ready to go. On the way home, I went through a red light just as it was changing and got pulled over. I told the policeman I was sorry, but my wife has been sick and I just picked her up from the hospital. He said he wouldn't write me as long as I promised to watch the lights. I gave him my word.
Marylin and I got home uneventfully about 4pm after stopping at Douglas Pharmacy. She got Prilosec, CellCept, Bactrim and Actigall. She ate lightly and went to bed early. She could not believe how quiet it is compared to the hospital.
Marylin okay, but she does not like taking all the pills. Her weight is 90 lbs. She is sore and crabby.
Marylin eating better. Weight = 88 lbs. She sometimes has strange sensations, probably from all the meds.
Marylin eating well. For breakfast, she had almost two pancakes; lunch was macaroni and cheese. She snacked here and there. She is sore near the insertion site of the tube and her back hurts. She is tired of the constant aches and pains. She quit feeling sorry for herself later. Weight = 90. I massaged her feet and back.
Marylin eating well. She took a bath which is hard for her alone. She said she is generally better today. Weight = 88. I flushed the tube and changed the dressing. The site looks good. Gunk comes out in the syringe when I flush the tube. I do not understand why Dr. C wants it capped off. Still jaundiced. Once, Marylin was slightly short of breath. It cleared up quickly on its own. She said it wasn't bad.
Marylin had a rough night yesterday. She had lots of trouble with itching. Same thing today. She is otherwise okay. Weight = 90. I flushed her tube. Still lots of gunk. She ate well. Marylin took a Benadryl about 9:30pm. At 10:30pm, it had little effect, so she took one more. She slept well throughout the night.
Marylin called Mary to find out what was going on with her short term disability. They were waiting for papers from corporate in New York. Marylin called corporate and had the papers faxed to me at work.
Marylin called the nurse clinician for a scrip for labs. She faxed it somewhere in the local hospital, but I don't know where. Marylin called her back and it was faxed to Radiology. Marylin said Dr. C is concerned about her kidney function because her creatinine was up when she was there. But the scrip is for Chem 18, lytes, CBC, platelets, Pt, AST, GGTP, Alk Phos and ALT. I think they're concerned about a little more than her kidney function. She is supposed to have the labs Thursday or Friday. I said it may have to wait until Saturday, but I didn't see what difference that would make.
Marylin is okay today. Weight = 90 lbs. She took a shower and wrapped her abdomen in plastic wrap. I flushed her tube and changed her dressing. Lots of gunk when I flushed. The site looks good. Marylin complains of back pain and pain inside where the tube is. No fever. She ate well. I gave her a back massage. Her pain went away. I gave her a pep talk, stressing that she needs a positive attitude. She may fail, but she must try. It seemed to help.
I faxed the short term disability papers to the nurse clinician. When I got home, there was a message from the nurse clinician. She didn't know if she should answer the question about duration as unknown or reevaluate at a certain date. I called her back and said to put unknown at this time and reevaluate at a certain date.
Marylin was great in the morning. She has left posterior pain. She is certain it's her kidneys. Some itching. I told her I thought she was giving up. I said I wasn't giving up and would move forward with or without her. No fever. Flushed the tube. Gunky, as usual.
I received the fax from the nurse clinician. Marylin better. More energy. She had some back pain. Itching, of course. Flushed the tube and changed the dressing. Weight = 90.
I took Marylin in for her labs at the local hospital. I got the results later. Labs are better. Marylin better. Itching, of course. Weight = 90.
Marylin okay. Itching, of course. We went to breakfast with my Dad for his birthday, then a little grocery shopping. Weight = 90.
Marylin okay. Still itching. The big snow started today. We lost power about 7:45am, right after I left for work. Marylin tunneled through a three foot drift to get wood for a fire. Weight = 90. It got down to 50 degrees in the house before the power came on about 3:30am. Marylin and I slept downstairs on the couches to keep warm.
Marylin okay. Itching the same. Weight = 90. I made a copy of the short term disability forms. When I got home, the nurse clinician had called Marylin. Marylin will need more labs next Monday. I changed her dressing and flushed the tube.
I mailed the short term disability forms to corporate. I spoke with the nurse clinician about Marylin's labs. I asked why Marylin needs another Pro-Time. the nurse clinician said because her PT was 16 once at the hospital. I told the nurse clinician Marylin's PT from last Saturday was normal. the nurse clinician agreed that Marylin does not need that repeated. A glucose was added. The nurse clinician explained they like to check that as a matter of routine. I told the nurse clinician it was fine, but Marylin has not had a glucose in years. Marylin okay. Weight = 90. Still itching.
Marylin eating okay. Weight = 88. She went in for labs this morning. Overall, labs are better. Still high, but coming down. Creatinine went from 2.4 to 2.5 though. I changed her dressing and flushed the tube.
Marylin and I arrived in Radiology at the hospital at 7:45am. We thought she was going to have the tube changed, but instead she only had a cholangiogram. Marylin said the radiologist told her she needed an ERCP to clean out her bile duct. We waited until 2:30pm to see Dr. C. In essence, Marylin is in liver failure. The question is not whether she needs another transplant, but when. Apparently, she has been in chronic rejection since 1993. She may be able to go quite some time and be okay. The biliary drain is only there now just in case she gets septic again. Dr. C wants her to have a creatinine clearance test and see a nephrologist. Marylin was very upset when we left.
Marylin took her 24 hr urine in. She put out 4050 cc, quite a bit. However, she took in at least 5000cc, drinking a 16 oz glass of water every hour. Her serum creatinine was 2.0, the best since before she went into the hospital. Her clearance was low and I am not sure what that means. I called Dr. M's office to make an appointment. He is off until next Monday. I didn't get the name of who I talked to, but she said they needed to see Marylin's labs from the last 6 months before I could make an appointment. Weight = 88. Itching not too bad, no Benadryl as of 5:30pm.
Marylin better. I took her labs over to CRC and spoke with one of the nurses there. She was very nice and explained that Marylin's creatinine clearance was not necessarily bad. I went over Marylin's last labs and showed how her creatinine was normal two days before her problem. I added that her creatinine rose to 3-4 at the hospital. I was given a form to fill out for Marylin to release her records from the hospital.
Marylin good. She holds off on her vitamins until later and no problems with vomiting. She had a lot of energy and washed her car today. Weight = 88.
Marylin good. Weight = 89. I got a call from Dr. C at work. He wants Marylin to come to the hospital Friday. She will have the biliary drain removed in the morning and then an ERCP with sphincterotomy and stone extraction. He said two stones are present at the distal end of the duct.
Dr. C called home at 5pm. I told him Marylin was out, but she is agreeable to the procedures on Friday. I asked what would happen if the biliary drain were removed and the stone extraction failed. He said a stent would be placed by ERCP. I agreed, pending approval by insurance. the nurse clinician will call Marylin tomorrow to set up an Radiology time. ERCP is set for 1-2pm.
Marylin good. Weight = 89. I called CCN and left a message. I want to make sure these procedures for Marylin are covered tomorrow, including the hospital stay if it is necessary. Marylin got a call from the nurse clinician that her appointment in Radiology was at 11am, then to 6H at 12p and ERCP at 1p. Marylin got a call from CCN saying that everything would be covered. Marylin got a form to fill out for disability.
Marylin good. Weight = 89. We arrived at the hospital at 10:45am. Marylin was scheduled to have her biliary drain removed at 11am, then ERCP at 1pm with Dr. S. I sat in the waiting room until I was called at 11:50am. I found Marylin in the holding room sitting in a chair. The tube was in. In fact, all that was done was a dressing change and an IV started. The radiologist did not feel comfortable removing the drain as it was Marylin's only access. Dr. S did not feel comfortable authorizing the drain to be removed. Dr. C was ill and could not be reached. After waiting half an hour, the radiologist came out and Marylin told him she decided to call it quits for today. He agreed. Marylin waited another twenty minutes and finally removed her own IV. The nurses were busy, but I thought they should have removed her IV. We went to Red Lobster for dinner. We wasted the day as far as any treatment was concerned and I lost eight hours of pay.
Marylin good. Weight = 89. Some itching, but controlled easily with Benadryl. Since we have heard nothing from the hospital, I left a message on the nurse clinician's voice mail. She called me about 10am. She had received the form, but had done nothing yet. She will get Dr. C to fill it out and fax it to me soon. I told her about what happened last Friday. I said I agreed with the radiologist. I told her I have seen many ERCPs and some fail no matter how good the physician is. I said I was concerned that if the tube is removed and the ERCP should fail, Marylin is right back where she started. She will eventually get septic and need another biliary drain inserted. I also told the nurse clinician I did not feel we should have to pay for anything last Friday since nothing was done. She said I should call Radiology and talk to them. I replied that they will tell me that did what they were told. And they would be right.
Dr. C called Marylin about 8pm. He apologized several times and said he would take care of any bills from Friday. He also told Marylin he will request the radiologists to sweep the bile duct with a balloon and push the small stones and debris into the small bowel. He said he will talk with the surgeons and call next week.
Marylin good. Weight = 89. Some itching, but controlled easily with Benadryl. Marylin is to see Dr. M April 16th at 3:15pm instead of April 29th.
Marylin good. Weight = 89. Some itching, but controlled easily with Benadryl. Marylin cooked Easter dinner all by herself at her insistence. She did an excellent job.
Marylin good. Weight = 90. Some itching, but controlled easily with Benadryl. Marylin received a disability check for April 1st-13th with a letter stating she would not receive any more until the disability form was received. I called the nurse clinician's voice mail and politely told her this. the nurse clinician called Marylin about 4pm. Dr. C did not fill all of the form out. The nurse clinician will take care of this and fax the completed form to me tomorrow morning. Marylin gave the nurse clinician several dates for her to have the next procedure done. Marylin also asked the nurse clinician about getting some labs done. She had had no labs of any kind since March 16th. Dr. C has repeatedly stated he is concerned about Marylin's renal function, yet no BUN or creatinine for almost one month. What is wrong with this picture?
Marylin good. Weight = 90 nude. Some itching. The nurse clinician called Marylin to say 1) she had just sent the disability fax form to me; 2) to have labs in the next few days. She faxed a script. The only differences were that a PT, PTT were added and 3) Marylin would be going to Radiology at the hospital next Wednesday at 8am. They will attempt to remove the stones and detrius with a balloon catheter. I do not know if a new biliary drain will be inserted. I wonder why no one calls me?
Marylin had her labs today. BUN and creatinine were normal!! Marylin good. Weight = 90. She saw Dr. M in the afternoon. He agreed that her elevated BUN and creatinine were medication induced, especially when he saw what meds she was taking and how often she took them. He suggested another creatinine clearance in a month or two. All good news today.
Marylin and I arrived in Radiology at the hospital at 7:30am. She went into the room at 7:51am after having an IV started. Marylin said Dr. S came in for the procedure about 8:30am. I was called back to the holding room about 9:30am. I ran into Dr. S on the way back. I asked how the procedure went. He said they were able to push the stones through and also dilated a stenosis since they were there with a balloon catheter. Marylin was hooked up to drainage. Dr. S said to leave it open for 24-48 hrs. We left at 11:30am and went to the new Cracker Barrel in Hammond. Marylin was sore and tired and slept most of the afternoon. She was sore all night. No fever. Weight = 90. I was surprised that she was not put on oral antibiotics.
Marylin good, but still sore. Weight = 90.
I faxed the following questions to the nurse clinician.
Marylin good. Soreness gone. Weight = 90. The nurse clinician called Marylin at home about 10am. The nurse clinician said Marylin can go back to work and would fax a work release. She would have no restrictions and could work with her biliary drain. She will be ballooned approximately once per month over the next four months. Apparently, this is the method of choice, even though Dr. C had ruled it out earlier. Her long term prognosis is that she will need another liver transplant. Marylin needs to do the workup tests with Dr. M. Marylin needs to call for a lab order one week before the next balloon dilatation.
Marylin good. Weight = 90. She worked 8 hrs. Marylin vomited 4 times throughout the night.
Marylin good. Weight = 90. I received the Reliastar statement for Marylin's hospital stay in February. Out of $17000, they paid $7000.
Marylin good. Weight = 92. She had some itching. When I flushed her tube, I noticed quite a bit of sludge and one denser object. I put the removed bile on some 4 x 4s and it appeared that the dense object was a soft stone. This makes me wonder how long Marylin will be out of trouble when her tube is removed in three months.
Marylin called me around noon to say she was home for lunch and had a fever of 100.8. She had vomited twice at work. She said she didn't feel bad and was going back to work. Her fever broke and she was fine. Later that evening, Marylin had another low grade fever, 99.7. Her stomach was sore from vomiting and she was tired. She pushed fluids, took Tylenol and had some toast. She went to bed early.
Marylin good. Weight = 92. She worked 10 hrs. I looked up Cell Cept in the 1998 PDR. It said that hair loss and trouble sleeping are common side effects. It can also raise most liver function tests and elevate BUN and creatinine levels.
Marylin went to the hospital to be ballooned today. We got there at 7:15am and were out at 9:45am. Marylin said she didn't get much Versed. She said Dr. F did her procedure this time. Marylin said she thinks he also ballooned a different place. She was told the tube may be in beyond August. She had no stones. We went to Cracker Barrel for breakfast. Marylin slept about three hours after. She had a temp of 99.5 and later 99.7. Her fever disappeared after taking two Tylenol.
Marylin good. Weight = 93. She went to see Dr. M today for a workup for another liver transplant. She will have a cardiac echo and a pulmonary function test. He said she looked good. Dr. M said he would let her know how much of the bill from February she owed.
Marylin good. Weight = 92. She was off today. Her echo and pulmonary function tests were essentially normal. We went to the ROBI party at Michael Jordan's restaurant in Chicago.
Marylin good. Weight = 92. We removed the tegaderm after over 24 hrs. No moisture whatsoever inside. Marylin has a pain in the mid epigastric area. She has no fever, no jaundice and no visible infection. The site is clean and the tube flushes easily. She also has a tremendous appetite.
Marylin good. Weight = 92. Slight drainage at tube site. Marylin complains of a toothache-like pain in the area. No fever, no loss of appetite. We rode almost ten miles on our bikes. Marylin ate as much as me today.
Marylin good. Weight = 92. Still a slight drainage at tube site. The pain appears to come from the skin underneath the hard plastic portion of the wafer. Appetite is good.
Marylin good. Weight = 92.
I called Molloy, the firm that has replaced Reliastar. I spoke with Jenny and said I was doing a followup from two weeks ago when I spoke to Reliastar. Jenny said they have about 3000 pieces of paper from Reliastar. They are coding them and entering them into their system as fast as they can. I asked if this claim could be speeded up as I have to pay the hospital physicians money. Jenny gave me a number to fax the claim and said she would try to speed it up.
Marylin had a bone density test several weeks ago. It showed she has the overall bone structure of a 59 year old woman with a femur of a 73 year old woman. Dr. C wants her to see an endocrinologist.
Marylin had her routine appointment today at Radiology. We were out at 9:30am. She had a 7 x 4 and an 8 x 4 balloon. Her 8.5F biliary drain was replaced by a 10F. Marylin is sore and depressed. She felt sure the tube would be removed today.
Marylin good. Weight = 90.
For the past few days, she has had what appears to be gastric distention. Her abdomen is full and tender in the LUQ. No fever or other symptoms. Lying on her stomach relieves the distention and the pain.
Marylin good. Weight = 90.
Some distention and pain after lunch, but both are gone now.
Marylin good. Weight = 90.
I got a call from Jenny at Molloy today. She re-reviewed Dr. B's charge and paid at least a portion of it. She also took care of the problem with Dr. S not showing as a CCN provider.
Marylin good. Weight = 90.
She got a call from the nurse clinician from the hospital. She will call Marylin tomorrow at work to let Marylin know what the plan is for her drain.
Marylin good. Weight = 90. She worked 8 hrs.
Marylin got no call from the nurse clinician.
I received one approval from Jenny at Molloy. They paid Dr. B's bill completely. I wonder why there was no CCN discount?
Marylin vomited about 9am. She felt better after. No fever. At work, she was sitting down and got very light headed. It passed on its own with no recurrence. Weight = 90.
Marylin good until about 4pm when she got flu-like symptoms. She was achy with a stiff neck and a temp just over 100. She was okay later.
Marylin good. She got a slight temp around 8pm which disappeared within an hour. No other recurrences.
Marylin good. Weight = 90. Again, she got a slight temp around 8pm.
She called the hospital to see if she needed labs before next Wednesday. She waited all day, then called again and was told no. After three weeks and asking three times, she still has no idea what the overall plan is for her.
Marylin and I arrived at the hospital at 7am. They were very slow getting going. Marylin did not go into the room until just after 8am. I was called back to Radiology about 9:30am. Drs. B and L did her procedure. Marylin said they showed her there still remains quite a bit of narrowing, so she was dilated with an 8mm balloon. We left at 10:15am. They wanted her to stay connected to drainage until tomorrow.
Just as we got in the door, the hospital was on the phone. The woman (I forget her name) asked if Marylin had her own insurance. I said no. The woman told me that Sheryl from Molloy refused payment for Marylin's visit on 8-5-98 because Marylin had her own insurance. I immediately called Jenny and left a message. I told her the problem and said I thought we had this straightened out one month ago. I asked Jenny to call me at work tomorrow.
I went grocery shopping. I checked Marylin. She had a temp. She was wearing slacks, a long sleeved blouse and was covered up with a sheet. I pulled the sheet off her. A few minutes later she vomited. She felt better. Her temp was 100. She began to drink water and took two Tylenol. Her temp went up and down for a few hours, never more than 100. After that, she was fine, except for the usual pain.
Marylin good. Weight = 90.
I grew tired of waiting for Jenny to call, so I called her. I explained what happened on Wednesday. Jenny claims that the claim was pending and sent to CCN so the discount could be applied. Sheryl did not deny it. I asked then why did the hospital tell me that? Jenny had no idea. I asked if she got my fax from several weeks ago. She said no at first, then found it on her desk. She obviously had not looked at it, but said she would take care of the bills Reliastar missed.
I called the hospital billing office and instructed them to please make sure they file with CCN first.
Marylin okay. For the past several days, she says her stomach doesn't feel right. It causes her to eat less. Weight = 90.
Marylin okay. Her stomach hurt at times. Weight = 90.
I paged the nurse clinician who called me back a short time later. I asked her what the plan is for Marylin. First she said I would have to call Dr. C and was going to transfer me there. Then she said Dr. M, a transplant surgeon, would be discussing Marylin's case with Dr. C next Monday. the nurse clinician said there could be more dilatations, surgical repair of the duct or another transplant. She asked me to call her back next Monday at this time. I said I would.
When I changed Marylin's dressing, I noticed a small amount of pus at the site and on the 4x4s. Other than local pain, she has no symptoms.
Marylin okay, but better than yesterday. Weight = 90.
I changed the dressing again. Still some pus, but less.
Marylin the same, until about 6:30am. She had more severe pain in the mid and left abdomen. About noon, she called the nurse clinician. Marylin will see Dr. C tomorrow at noon. No fever.
Weight = 90. She worked 8 hrs.
Marylin had her labs in the morning. She went to the hospital for an appointment with Dr. C. He called me at work at 12:30pm and asked for Marylin's labs as the local hospital's lab did not fax them as requested. The labs were essentially unchanged from the last time. He said Marylin is having a tube check in Radiology as we spoke.
Marylin called me at 4pm. She was on Cline Avenue on her way home. It turned out that the biliary tube was pushed in much too far and was irritating her duodenum. The tube was replaced with another 10F. Marylin does not know if she was ballooned.
Marylin did fine all night. Weight = 90.
Marylin good. Weight = 90.
I called the nurse clinician and left a message reminding her to speak to Dr. M about Marylin. I told her Marylin got instant relief after the tube was repositioned on Thursday.
The nurse clinician called me back and said she did bring Marylin's name up at the meeting with Dr. M. No answers yet, but maybe later this week.
Marylin good. Weight = 90. We rode our bikes 12 1/2 miles.
Marylin good, then vomited in the morning and got a headache. Later, she got a temp of 101. She took two Tylenol and was okay. She ate throughout the day and felt better.
Marylin good. Weight = 90.
I called the hospital Physicians Group. I asked her about the fax I sent her on 9/17 about the CCN discount. She said they should have an answer by next week.
I called Nephrology Specialists about Dr. M's bill. Their computer system is down.
I called Jenny at Molloy. She said that she has Dr. M's bill and it will be paid.
Marylin good, except for a cold. Weight = 90.
I called Shirley at Nephrology Specialists and told her Jenny from Molloy was working on their bill. I gave her Jenny's phone number and extension.
I called the hospital Physicians Group and asked for Arlene. I was told by Mary that Arlene's last day was two days ago. Mary was very nice and said I could fax the info to her. But now we've waited more than one month and we have to start all over again.
Marylin good, except for the cold. Weight = 87. She had chills and vomited during the night. Appetite is poor.
Marylin good. Weight = 87.
We got a questionnaire from Sheryl at Molloy wanting to know if Marylin's procedure on Sep 16th was due to accident or injury.
Marylin had a restless night. She had trouble sleeping and had dry heaves for a time. She was okay until 9:30am when she felt hot at work. She had no temp, but felt bad. She went home at 11am. She stayed in bed all day. She ate a normal supper and felt much better. Weight = 87.
I called Jenny at Molloy and got the machine. I asked her to please expedite claims to Nephrology Specialists and Hammond Pathologists.
Marylin better. Weight = 87.
I called Mary at the hospital Physicians Group. I identified myself and asked if she had resolved the problem of the CCN discount. At first, she had no clue who I was or what I was talking about. I gave her Marylin's patient number and explained I talked to her three to four weeks ago and sent her a fax with details. After waiting a few minutes, she agreed that the CCN discount would be applied to that date. I asked if it would be applied to all dates as Marylin is a recurring patient this year. After some hesitation, Mary agreed that it would be honored.
Marylin good. Weight = 87. We arrived at the hospital for a scheduled visit. Marylin's tube was downsized to a Cook 6F Mac Lok. She was not ballooned. Dr. L did the procedure. Marylin said Dr. L called Dr. M, a transplant surgeon. She thought she overheard that she needs a stent although no mention of one was made. She got no Versed and was able to leave right after the procedure. She ate a big breakfast after, then took a nap. She does not have as much pain as usual, but she is still uncomfortable.
Marylin good. Weight = 87.
I received a bill from Hammond Pathologists dated 11/14/98. It said if Hammond Pathologists did not receive $65.50 for services rendered on an unknown date, we would be turned over to a credit agency. I had to call Garland TX and spoke to Dagda. I asked when the date of service was; she replied 7/31/98. I told her the date of the letter, the date of the postmark (11/18/98) and that even if I wrote a check as we were speaking, it would not get there by 11/24/98. She said she would put my account on special hold. I mailed the check an hour later. So much for Molloy paying the bill promptly.
Marylin good. Weight = 87.
I called Jenny from Molloy and told her about the bill from Hammond Pathologists from 7/31/98. She said Molloy never received it. I said I will fax the info to her. I also asked where we were with Nephrology Specialists. Jenny said the check went out 11/19. The Molloy statement was there when I got home.
Marylin good. Weight = 89.
We received a statement from Sheryl at Molloy concerning the visit on September 16th. Even though Molloy paid the hospital, Sheryl needs more info. Marylin will fax this to Jenny at Molloy tomorrow.
Marylin woke up about 3am and vomited. She had a temp of 100.
Marylin good. Weight = 89.
We received a statement from Molloy. Sheryl says we need to send documentation of the date and services by the Hammond Pathologists rendered before Molloy will pay. Marylin will fax tomorrow.
Marylin and I arrived at the hospital at 8:15am for her 9am appointment. They had several emergencies and we had to wait until 10am before she went in. I was called back to the holding room at 10:50am. Marylin was sitting down, crying. Her bile duct is not responding to treatment. They upsized her tube to an 8.5F drain.
Marylin has an appointment for Friday, January 15th at 7:30am. Marylin was told to call her attending. No one in Radiology is talking. Marylin is very depressed. Weight = 88. She had no temp.
Marylin good. Weight = 88. For some reason, she was weepy today.
I called Dr. C at 9am and spoke with his secretary. I left a message for him to call me at work within the next three days.
We received a payment today from Molloy for services on 11-11 by the hospital MDs. No CCN discount was applied. Marylin will fax a response to Molloy tomorrow.
Marylin good. Weight = 88.
No call from Dr. C.
Marylin faxed the response to Molloy.
Marylin good. Weight = 88.
No call from Dr. C.
Marylin good, except for a cold. Weight = 88.
I called Dr. C's office again today and asked for him to call me at work today or Wednesday.
Marylin good, except for her cold. Weight = 88.
Dr. C never called..
Marylin good. Weight = 87.
I called Dr. C's office and explained that this was the third week I was calling with no response from the doctor.
Dr. C called me at work at 5pm. Basically, we can cancel the Radiology appointment for Jan 15th and move it back one month. Soon, Marylin will have a Wall stent placed as a last effort to hold the bile duct open. Dr. C and I both agreed that it will not last indefinitely. I brought up adult-to-adult living donors. Dr. C was very excited that I brought this up. He will talk to Dr. M and call me Wednesday or next week.
I received a statement from Sheryl at Molloy dated 12-29-98 stating that she was still waiting for an itemized statement from the Hammond Pathologists. Marylin faxed this info to her on 12-11-98.
Marylin good. Weight = 87.
I called Sheryl at Molloy and left a message. She called me back several hours later. She does not need an itemized statement. She needs a claim from Hammond Pathologists. Sheryl and I went around and around. Sheryl was polite but persistent. She stressed how busy she was. She did give me an 800 number to the Hammond Pathologists which I tried over 30 times and was always busy.
I called Mary at the hospital Physicians Group. She was on the phone and I left a message on her voice mail. I want to know when I will receive the $300 we overpaid them last year. She never called back.
Marylin good. Weight = 87.
I called the local number to Hammond Pathologists billing service, conveniently located in Garland, TX. We live about twenty miles southeast of Chicago. The person I spoke with was very polite. She showed that our account was $0. I explained to her what Sheryl from Molloy wanted. Sheryl had sent them the same form. I was told Hammond Pathologists mailed the claim to Sheryl. I asked if they could fax the info to Sheryl. The woman was very polite and said she would do it today.
Marylin good. Weight = 87.
I called the hospital Physicians Group to talk to Mary. I was put on hold for several minutes and gave up.
I called Molloy to talk to V.I. about paying the entire physician's bill and not using the CCN discount. She is out until Monday.
Marylin good. Weight = 87. Still the persistent cough.
I called Sheryl at Molloy to see if she got either the mail or fax from the Hammond Pathologists. She said she did not. I called Evelyn at the Hammond Pathologists. Evelyn insists she mailed the claim and faxed it on January 6th as I requested. I gave her Sheryl's number; Evelyn said she would call her right away.
I called the hospital Physician's Group. Once again, it was so busy, I had to leave a message. I could not get to Mary's voice mail, just a generic one. I repeated what I said a week ago and added that Sheryl at Molloy needs an operative report for the visit on September 16th.
Marylin good. Weight = 87. Still the persistent cough.
I called Sheryl at Molloy and left a message. I was very upset that she claimed to have received nothing from the Hammond Pathologists. I assertively requested she call me at work or home and let me know what was going on. I was so upset I called Human Resources and got the name and number of the representative in charge of Molloy. When I got home, there was a message from Sheryl. She talked to Evelyn at the Hammond Pathologists. I should be receiving a check next week.
I called the hospital Physicians Group. Purely by chance, Mary answered. I identified myself and asked why she did not return my message I left on her voice mail. She said she did not get that message. How convenient. I wanted to know why we have not received our $300 back since the Physicians Group has agreed to honor the CCN discount. I told her if she could not give me the answer I needed then to please put me in touch with that person. She asked if I could fax her my proof of payment. I said I would.
Marylin good. Weight = 87. Still the persistent cough.
Marylin faxed the info to Mary at the hospital Physicians Group.
Marylin good. Weight = 87. Still the persistent cough.
We received the statement from Molloy for the hospital MDs for Aug 5th, 1998. No CCN discount was applied.
Marylin good. Weight = 87. Still the persistent cough.
We received a check from Molloy for the Hammond Pathologists bill of Jul 31st, 1998. A CCN discount of $18.69 was applied.
Marylin good. Weight = 87. Cough a little better.
I called the hospital MDs eight times before I could talk to a person. I requested the name and extension of the supervisor who I spoke with. I explained that I would like to call her later to discuss my problem. She gave me two direct lines I could reach her at and was very polite.
I called Sheryl at Molloy to see why she paid the hospital MD bill at 100% with no CCN discount. She called me later to say that was because Dr. F is not in the CCN system. When I got home, I found his name in the CCN Autumn 1998 Addendum book.
Marylin good. Weight = 87. Cough is better.
I called Sheryl at Molloy and left a message stating that I found Dr. F's name in the CCN Autumn 1998 Addendum book and that I checked in HR to make sure this data was correct. Sheryl left me a message at home stating she had just received an updated book yesterday and Dr. F's name was in it. She verified that Dr. F has been listed with CCN since 7/1/98. She will contact CCN to see if we can get a refund from the hospital MDs.
I called Edith at the hospital MDs. She verified that we were due a $250 refund. I said my records show $300. I volunteered to fax the information to her tomorrow.
Marylin good. Weight = 87. Cough is better. She faxed the information to Edith.
Marylin good. Weight = 87. Cough is the same.
Edith called me and verified that the hospital MDs owe me $300. The bad news is it will take 4-6 weeks for me to receive a check. I thanked her.
Marylin good. Weight = 87. Cough is better.
I called Dr. C and left a message for him to call me. He did not call.
Marylin good. Weight = 87. Cough is better.
Marylin called the nurse clinician and asked her to please have Dr. C call me.
Dr. C called at home about 6pm. We talked about ten minutes. Dr. C has decided against the Wall stent at this time. He said the hospital surgeons do not yet appear ready to try adult living donor liver transplants, although the surgeons are aware I am willing to donate. The debate now is whether they should continue to maintain Marylin with the biliary drain or to try for a transplant sooner rather than later. Dr. C feels there should be little trouble getting her a new liver, even based on her current condition. He did say there were several areas of stenosis, not just at the site of anastomosis. I asked about the possibility of a stent placed endoscopically. He said it would require two stents and it would be rather difficult. I agreed that changing two stents every three months does not sound like a good idea. Dr. C said there will be another meeting tomorrow to discuss Marylin's condition. I asked him to call me next week and thanked him for calling.
I told Marylin everything. She is very depressed. I told her she is above ground and to hang in there.
We received the $300 overpayment from the hospital Physicians Group.
Marylin good. Weight = 89. We arrived at the hospital at 6:45am. Traffic was unbelievably light. Marylin was called back at 7:15am. This time she was done in Room I-5, a small multipurpose room. Her tube was changed out for another 8.5F. Marylin said Dr. L did the procedure. He told her there was no change. We left at 9:30am. We had breakfast at Jedi's. Marylin was tired and slightly sore. She had no fever. This was her best experience to date.
Marylin good. Weight = 89.
I called Evelyn at the Hammond Pathologists in Garland TX. I reminded her that she received my check of $65.50 for services rendered on July 31st last year in November and payment from Molloy in January. However, there was a CCN discount of $18.69 that I am owed. I also added that I mailed this info to her about one month ago. Of course, she never got it. They did rebill Molloy a few weeks ago for the same service date, which makes me question the truth of her statement. Evelyn did say that if I fax the bill and the Molloy statement to her she will add me to the list. Per Evelyn, it seems that Hammond Pathologists has been working on setting up a special account for paybacks. This is taking some time, since the bank is in Texas and Dr. Gallagher is in Indiana. Evelyn has no idea when I will be reimbursed, but they are working on it.
I also asked Evelyn about a bill I received two days ago for services on October 1st of last year. Evelyn said she sent the bill to Reliastar. I told Evelyn that Molloy has been solely handling the insurance claims since July of last year. I added that I felt I should not be threatened with a collection agency since she sent the bill to the wrong insurance handler. She assured me this would be the case.
Marylin good. Weight = 90.
I spoke with HR about the statement I received from Sheryl at Molloy on 3/25. They will authorize payment of 100% which will save us $113.85, but we are stuck with the $300 deductible.
Marylin good. Weight = 90.
She complained of a toothache like pain at the site. I cleaned it and she does have a small infection.
Marylin good. Weight = 90.
She is still having pain at the site. There was more pus. I cleaned it again. Marylin woke up about 12:30am and vomited. She had a temp of 100. She took two Tylenol and was okay in the morning.
Marylin better. She got up at 5:30am and left for her transplant seminar at the Rosemont. She was gone until 9pm. She was tired when she got back and had very little appetite, but otherwise okay.
Marylin tired all day. Her appetite was poor. No temp. No pain at her site. Her hands hurt and she insists she has gout.
Marylin better. Weight = 90. Her appetite is better. She called the nurse clinician to have some labs done for gout.
Marylin good. Weight = 90. We went to the hospital for a routine two month tube change. We were in Radiology at 7am, out at 9:15am. Marylin had the usual soreness at the site, but was otherwise okay.
The nurse clinician called. She has mailed an order for Marylin's labs. She will include uric acid even though the nurse clinician and I agree that Marylin's problems with her hands is probably arthritis.
Marylin good. Weight = 90.
We received a statement from Sheryl at Molloy for hospital charges. Sheryl only paid at 70%.
Dr. K, the interventional radiologist where I work, agreed to change Marylin's biliary drain as needed.
Marylin good. Weight = 90.
I gave HR a copy of the Molloy bill from yesterday. They will see that it is paid at 100%. I also told them that Dr. K agreed to change Marylin's biliary drain. I still need permission from Dr. C. I asked HR if this goes through, will there be any penalty since Marylin went to the hospital twice this year already. I was told no.
Marylin good. Weight = 90.
I spoke with the nurse clinician. She agreed to speak with Dr. C about Marylin having her tube changes where I work.
Marylin good. Weight = 90. She had her labs today. They were the best in some time.
The nurse clinician called back. Dr. C says no problem to Marylin having her tube changes at the local hospital. All he wants is a report faxed.
Marylin good. Weight = 89.
We received a statement from Sheryl at Molloy saying she needs a full description of the services rendered on 9-16-98.
Marylin good. Weight = 89.
We received a statement from the hospital Physicians Group. They want $2,156 from the procedures done on 9-16-98.
Marylin good. Weight = 89.
I called Sheryl and left a message concerning the problem with the 9-16-98 bill. She never returned my call.
Marylin good. Weight = 89.
Marylin faxed the following two documents:
Sheryl,
On May 7th, I received the attached claim stating you need a full description of this surgery. You sent me a questionnaire concerning this same procedure on Nov 2nd, 1998. On Dec 2nd, you sent me a statement identical to the one I just received. My wife faxed Jenny the needed information on Dec 3rd. Since we have not heard from you, I assumed this issue was taken care of.
To quickly resolve this issue, please contact Edith at the Physicians Group. Please resolve this issue promptly.
By the way, this bill is for dilatation of Marylin's bile duct and replacement of the biliary drain. This is routine for her.
Edith,
On May 8th, I received the attached claim stating you need payment in full as J.F. Molloy has not yet paid this bill. I have just faxed Sheryl at J.F. Molloy concerning this issue.
I spoke with Mary concerning this issue on Jan 11th and with you about one week later.
To quickly resolve this issue, please contact Sheryl of J.F. Molloy. Please resolve this issue promptly.
Feel free to contact me.
Edith called and left a message this morning. She was very nice and wanted to let us know that she had faxed the necessary information to Sheryl at Molloy. I never heard from Sheryl.
Marylin good. Weight = 89.
We received a fax from Edith at the hospital MDs detailing exactly what was sent to Sheryl at Molloy.
Marylin good. Weight = 89.
We received a statement from Sheryl at Molloy. She paid $1914.50 out of $2156.
Marylin good. Weight = 89.
I called Sheryl at Molloy. She states this bill is more than the others for Marylin and $1914.50 is all Molloy will pay.
Marylin good. Weight = 89.
I gave HR the Molloy statement dated 5-14-99 where we were paid at 80%. They will make sure we are paid at 100%.
I called Sheryl at Molloy and left a message. On May 26th, Sheryl told me in a phone conversation that all of the $2156 bill from Sep 16th, 1998 hospital MDs bill was not paid because it was more than usual and customary. However, Sheryl paid 100% of a $2156 for an identical treatment on Aug 5th, 1998. Sheryl did not return my call.
Marylin good. Weight = 89.
She had her tube changed by Dr. K at the local hospital. Marylin could not say enough good things about the experience. This was the best she has ever been.
I called Sheryl at Molloy and left a message.
Marylin good. Weight = 89.
I called Sheryl at Molloy and left a message. Around noon, I called again. Instead of leaving a message, I dialed 0, requested Sheryl and there she was! Sheryl has had a sick child which is why she has been too busy to return my calls. She also has two phone lines and can't always check messages. When I asked why she paid all of the $2156 bill to the hospital MDs on Aug 5th, 1998 but not for Sep 16th, 1998, Sheryl said she discussed this with her supervisor and that was her decision. I asked for her supervisor's name: Venus. Unfortunately, Venus does not have a phone I can access. I asked Sheryl to ask Venus to call me tomorrow. Sheryl asked why. I said obviously because I am dissatisfied with Sheryl's answer.
We were on vacation in Banff. Marylin had no problems whatsoever.
Marylin good. Weight = 89.
I called Hammond Pathologists in Garland TX. Evelyn is no longer there. I spoke with the nurse clinician. She will send the bill to Molloy from Marylin's last labs.
Marylin good. Weight = 89.
Marylin ran out of Cell-Cept.
Marylin good. Weight = 89.
Thankfully, Pharma Card had some Cell-Cept. I picked it up and Marylin only missed her morning dose.
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