Day 33 – Sunday, December 12, 2010
WBC 5.34 / ANC 4.63 / Creatinine 1.2 / BUN 36 / Hemoglobin 10.3 / Platelets 120
Today was another day at Moffitt. Bill continues to improve, the doctors are talking about discharge later in the week if things continue to move it the right direction. They are still concerned with his fluid intake so he continues to get fluids during the day and TPN over night.
We started to notice that Bill’s skin looked like it was burned. His hands became extremely chapped, the skin cracked and he was in pain. It was most noticeable on his head, neck and hands. The doctor prescribed Triamcinolone Acetonide Cream USP, 0.1%.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 34 – Monday, December 13, 2010
WBC 4.48 / ANC 4.07 / Creatinine 1.4 / BUN 39 / Hemoglobin 10.5 / Platelets 114
Today Bills Tacrolimus Level was checked to see if he was getting the right dose. The level came in at 22.7 (normal is between 5.0 to 15.30) so his dosage was reduced. Every Monday a chest x-ray is performed, the one done today came back negative. Today I did not get to the hospital in the morning; I stayed at the apartment to work on a project that was due at work. This was the first day that I was not there to see the doctors when they rounded. I finished around 12:30pm and started to get ready to leave for the hospital when the phone rang, I could not believe my eyes, it was Bill!!!. This is the first time in over a month that he has touched his phone. The purpose for his call was to request food, to get him some cannoli. I was so excited to get a call from Bill, but even more excited that he was requesting that I bring food. I ran to Publix, picked up two cannoli’s and got them to Bill as quickly as I could. He tasted the cannoli and could tell it was not fresh, like we get from an Italian bakery, he did have a few bites. What is important here is that Bill was back!!! He was aware of his surrounding and the delirium was just about gone.
The TNP was started again at 6:00pm, and Bill did eat a few bites at each meal time. The burning in his mouth and throat were bad. He described the pain as fire.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 35 – Tuesday, December 14, 2010
WBC 4.66 / ANC 3.95 / Creatinine 1.5 / BUN 38 / Hemoglobin 10.0 / Platelets 112
Since I did not see the doctors round yesterday, I got up and made it my priority to get to the hospital so I didn’t miss them. Normally they don’t round before 9:30am. I got to Bill’s room and they were all in there talking with him at 9:00am. The doctor was asking Bill if he thought he was ready to go home. The then asked me the same questions. Based upon the way Bill responded to the Dr. it was clear to me that he was ready to go home. I believed that the delirium was gone and was not going to be an issue when I got him home. Once it was agreed that Bill would go home, the Dr. informed us that they wanted to do the bone marrow biopsy which is normally done at day 30. The procedure was schedule for 8:00am the following day. Since Bill’s fluid intake was not above the 2 liter mark, he was scheduled to return to the Bone Marrow Transplant infusion center (BMT) every day for a three hour infusion of a liter of saline.
After the rounding and discussions with the nurse, I ran out to go shopping to get food in the house, knowing that once Bill was home it would be difficult to get to the store.
Bill was discharged at 6:30pm, by Alli, the same nurse that discharged him the first time. Alli said to Bill as we were leaving, with a smile on her face, "I hope I never see you again". That is the line the nurses use to let you know that they don’t want you back in the inpatient setting, to stay healthy and stay home.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 36 – Wednesday, December 15, 2010
WBC 5.68 / ANC 4.66 / Creatinine 1.5 / BUN 35 / Hemoglobin 10.8 / Platelets 124 / Magnesium 1.8
First thing in the morning, Bill had his bone marrow biopsy. Everything when well during the procedure, Bill did not feel a thing. From the biopsy we went to the BMT to get the daily 1 liter infusion of saline. We did not get out of the Clinic until almost 4:30pm, it was a full day.
Bill has continued to have pain while trying to eat. The pain does not seem to be getting any better. We discussed the pain with the nurse and the PA, since Bill has an appointment with the Dr. on Thursday they decided to wait on taking any action.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 37 – Thursday, December 16, 2010
WBC 3.98 / ANC 3.22 / Creatinine 1.4 / BUN 28 / Hemoglobin 10.3 / Platelets 99 / Magnesium 1.5
Today started off like all the other days, Bill got up, showered and took his pills. We got to the clinic at 10:00am for our daily drip. Every day after you check in at BMT, the techs take vital signs. Bill’s temperature was 100.5, the magic number for signs of an infection. That number is the catalyst for a protocol to test Bill’s blood for every know Bacteria, Fungus and Virus, they call it "fever protocol". They took blood cultures from each line of the triple lumen catheter, cultures from the power port and peripherally in his arm. A urine analysis was also done. We knew it was going to be another long day.
Bill was hooked up for his three hour drip and we waited for the CBC to come back. Normal magnesium levels are between 1.6 and 2.3; his level came back at 1.5 so a dose of magnesium was added to the IV tree. Due to the temperature, Bill was also started on Cefepime – 1mg IV.
Now we begin the waiting game to see if they will find it necessary to admit Bill. Throughout the day, Bill’s temperature varied from 99.7 to 100.3, but never reached 100.5 again. Around 4:00pm the Dr. came in to the clinic for Bill’s weekly appointment. Based upon the preliminary blood work and Bill’s temperature readings through the day, he did not feel it was necessary to admit Bill. The next topic of discussion was Bill’s weight and inability to eat due to the burning in his mouth and throat. The doctor took a look in Bill’s mouth and ordered a swab culture of the sores. We were on our way home by 6:30pm.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 38 – Friday, December 17, 2010
WBC 4.12 / ANC >1.5 / Creatinine 1.3 / BUN 24 / Hemoglobin 10.6 / Platelets 102 / Magnesium 1.3
We got to the BMT clinic at 10:00am for our daily drip. Today Bill’s temperature was 99.5 , 1 degree below the 100.5. His weight was 53.2kg or 117.25 lb. Since his admission on November 3, 2010 Bill lost 20 pounds. In the last week he lost about 8 pounds. This is an alarming decline in weight and a discussion with the PA was scheduled while we were at the clinic. Since Bill’s magnesium was still below 1.6 he received another bag of IV magnesium.
Around 1:00pm the PA came in to see us and brought results of the mouth swab. The results came back positive for Herpes Simplex Virus (HSV). It was not a total surprise to us since we were told that HSV was one of four viruses that were possible post transplant. Bill was taken off of Acyclovir 800mg, 1 tablet twice per day and put on Famciclovir (Famvir) 500 mgs, 1 tablet twice per day. The Acyclovir is an anti viral used to prevent the sores from starting. The 500mg dose of Famvir is a therapeutic dose to heal the outbreak.
Since Bill has had no relief from the pain in his throat and the news of the herpies virus in his mouth, the doctor ordered an endoscopy to take a look at Bill’s esophagus and stomach to see what was going on. The procedure was scheduled for Monday morning at 8:00am. Bill was also started on Sucralfate (Carafate) – 1 gram (10 ml or two tea spoons) by month at each meal and bedtime. Sucralfate is used to treat ulcers. It adheres to damaged ulcer tissue and protects against acid and enzymes so healing can occur.
Up until this point, Bill did not have the energy to talk on the phone, and the sores made it difficult if he tried. Thursday night I called his sister Margy and told her that Bill needed a visit. When we got home from BMT I told Bill he was getting company that night, so he took a nap and then waited up to see his visitors. Friday night Margy (FL) and Lue (NY) came at 11:30pm to see Bill. He was very happy. Best of all I asked Lue to bring cannoli from NY and she did.
Getting it through customs is a great story, too long to tell here. We are thankful she had an understanding and compassonate TSA employee for took the time to listen (Imagine). By midnight everyone was in bed, Lue and Margy stayed in the extra bedroom.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 39 – Saturday, December 18, 2010
I did not get the blood results for this day.
We got to the clinic at 9:30am for the daily drip. We were informed that one of the cultures from Thursday came back positive for a blood infection. It was common and easily treatable with the antibiotic - Daptomycin, 4 Milligrams/Kilogram intravenous for 10 days. Along with the 1 liter of saline, Bill started the Daptomycin.
While we were at the clinic his sisters went shopping to make Bill a homemade meal. I do my best with the cooking, but there is nothing like a real good Italian meal. When we got back to the apartment we heard Christmas music playing through the door. We open the door and found that they had decorated the apartment with a small Christmas tree, stocking, gifts and the works. It was such a nice treat after everything that both Bill and I had been through for the last seven weeks. We celebrated Christmas early this year by opening the gifts and having a grand old time.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 40 – Sunday, December 19, 2010
I did not get blood results for this day.
We got to the clinic at 10:00am for our daily liter of saline and the second dose of Daptomycin. Nothing new was added, we got back to the apartment by 2:00pm and enjoyed the rest of the day with his sisters and brother in law (Gary). We had a great home cooked meal. Everyone left to go home around 5:00pm
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 41 – Monday, December 20, 2010
Due to the endoscopy, I forgot to get blood results for this day.
We got to the clinic at 7:50am for the 8:00am endoscopy. Bill was taken in and was done by 9:30am. Everything when smoothly and Bill did not have any pain. Post procedure, the Dr. that did the endoscopy told us that Bill had lesions throughout his esophagus. A biopsy of his esophagus and his stomach were taken and sent to the lab. From the procedure we went to the clinic for our daily liter of saline and third dose of Daptomycin.
We spoke to the PA about Bill’s weight loss and asked if we could start TPN again. Not being able to eat and fuel his body was delaying his recovery. The case manager was called to start the process with the insurance company.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 42 – Tuesday, December 21, 2010
WBC 4.93 / ANC 4.44 / Creatinine 1.3 / BUN 20 / Hemoglobin 9.2 / Platelets 99 / Magnesium 1.4 / Phosphorus 2.4
We got to the clinic at 9:30am for our daily liter of saline and forth dose of Daptomycin. Magnesium was below 1.6 so Bill got a bag of IV magnesium. His phosphorus was also low (normal is 2.5 – 4.5) so he received a bag of IV phosphorus.
The results from the biopsy of the esophagus taken on Monday came back positive for herpes. The biopsy of the stomach came back with a mild case of GVHD. Since Bill was already on 500mg of Famvir twice a day, he was already on a therapeutic dose for the herpes in his esophagus., the Budesonide (Entocort) and the Beclomethansone was already treating for GVHD so no new medications were added. The doctor told us that Bill had a severe case of HSV and could understand why eating was a problem.
Late afternoon, Bill’s son William came to Tampa to provide me with a respite day. He spent the night so that I could go home to Titusville on Wednesday.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 43 – Wednesday, December 22, 2010
WBC 3.63 / ANC >1.5 / Creatinine 1.3 / BUN 17 / Hemoglobin 9.2 / Platelets 100 / Magnesium 1.5
I went home to Titusville very early in the morning to go to work for the day. After work, I went over to Wendy’s house to visit with Tweedy our bird. We let Tweedy out of the cage to fly around and stretch his wings. After, Tweedy got a bath and then I left to go back to Tampa. Wendy and Scott are doing such a great job with Tweedy.
Bill and his son got to the clinic at 10:00am for his daily liter of saline and fifth dose of Daptomycin. Magnesium was low again so Bill received another bag of IV magnesium.
We received two movies from Bill’s sister Marietta which provided us with a nice treat. Crossing Delancey and Avalon, two movies neither of us has seen. Thanks Marietta!!
William brought oranges picked from the tree at our old house in Deltona (The house is owned by Lue). He also brough his orange juice squeezer and made orange juice. Everything went well while I was away and Bill told me that William did a great job. Thanks William!!
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 44 – Thursday, December 23, 2010
I did not get blood work results for this day.
We got to the clinic at 9:30am for our daily liter of saline and sixth dose of Daptomycin.
Bill had his weekly appointment with the doctor and nothing was changed. Blood work was ordered to be done once a week going forward.
Since we did not hear anything about the TPN, we paged the case manager to find out what the hold up was. We found out that the Insurance company denied the TPN. We, along with the doctor felt that an appeal was in order, so it was filed Thursday afternoon. The insurance company has three days to make a determination on the appeal, with the holiday and week-end upon us we made the decision to move forward with the TPN, it was Bill’s life and body that were at stake. Everything was set up for delivery of the TPN by 5:00pm the next day. A home health nurse was scheduled to come and hook up the TPN and provide me with training.
My friend Jeff and his wife Crystal (who was expecting a baby any day) came over with Pizza for dinner. Although Bill was not able to eat due to the sores he hung out with us as long as he could.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.
Day 45 – Friday, December 24, 2010 – Christmas Eve
We got to the clinic at 10:00am for our daily liter of saline and seventh dose of Daptomycin. We got home and Bill was feeling fatigued and weak. He went to bed and stayed there for the remainder of the day, resting and watching TV. Around 5:00pm we heard someone singing Christmas carols outside the bedroom window, I opened the blinds and found Bill’s sister Margy and her husband Gary singing to Bill. (this was planned the week-end Margy came and decorated the apartment with Lue). Margy’s daughter Mollie and her friend Catherine also came to visit. Margy cooked another nice meal and left plenty of leftovers. Tonight was the first night that Bill had more than a few bites to eat.
The TPN, supplies and IV poll showed up. The nurse from home health care came and hooked up the TPN and provide me with training to hook him up the next four nights.
After the TPN was hooked up we had Cheese cake, Ice cream and apple pie for desert and then everyone left to return home.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 46 – Saturday, December 25, 2010 – Christmas Day
We got to the clinic at 9:30am for our daily liter of saline and eighth dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.
Around 7:00pm, I did my first ever hook up to an IV line. I was very nervous, but had my notes and directions and did ok. Needless to say, I started the TPN with no problems and Bill did not have any reactions. What a relief. Bill is starting to eat a few bites at breakfast, lunch and dinner.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 47 – Sunday, December 26, 2010 – Happy 3rd Birthday to my nephew Ryan
We got to the clinic at 9:30 for our daily liter of saline and ninth dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.
Around 7:00pm, I hooked up Bill’s third TPN. Bill has been getting up to urinate almost 20 times during the night so his sleep in not very productive. His eating is doing marginally better each day.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 48 – Monday, December 27, 2010
We got to the clinic at 9:30am for our daily liter of saline and tenth and final dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.
Bill continues to eat a little more each day and is starting to get some relief in his esophagus.
Around 7:00pm, I hooked up Bill’s fourth TPN. Bill continues to get up to urinate 20 times during the night so during the day he is very tired. Bill continues to have pinkish colored urine.
Day 49 – Tuesday, December 28, 2010
We got to the clinic at 9:30am for our daily liter of saline. The nurse in the BMT clinic disconnected the TPN and flushed the lines. Since the Daptomycin ended yesterday, blood cultures were once again done to confirm that the infection was gone.
The PA informed us that Bill tested positive to a fungus test two weeks in a row and would need to start medication the next day to treat. When this fungus is detected, a CT of the Thorax and Sinuses is order to confirm the diagnosis and make sure it is not a false positive. The CT was scheduled for the very next morning at 8:00am.
Around 5:00pm, I hooked up Bill’s fifth and final TPN. The plan is for me to disconnect the TPN at home prior to leaving for the clinic for his CT’s. He is still getting up frequently during the night to urinate and continues to have pinkish colored urine.
Day 50 – Wednesday, December 29, 2010 – Happy Birthday Margy!! Half way to day 100
WBC 3.08 / ANC >1.5 / Creatinine 1.1 / BUN 36 / Hemoglobin 9.1 / Platelets 102 / Magnesium 2.3
We got up at 6:00am and at 6:30am I disconnected the TPN and flushed his line with saline and heprin. We left for the clinic and at 8:00am Bill had his CT’s. We were in the BMT clinic by 9:00am for his daily liter of saline. We went home for a few hours after the clinic visit and then returned for our 3:30pm appointment with the doctor.
During our visit with the doctor we learned that the CT’s both came back negative so the additional medication was not necessary. However the CT did show that the right side of the kidney showed hypo cellular nephrosis. It was suggested that Bill get a stent placed in the ureter to prevent the kidneys from creating a problem or getting damage. The ureters are muscular tubes that allow urine to pass from the kidneys to the bladder. Due to the BK virus the passing of urine is not happening freely as it should. The doctor suggested we get a consult from urology before the procedure is scheduled. Since Bill is still getting sores in his mouth the Famvir was increased to 500mg, 1 tablet three times a day. The blood cultures done on Tuesday were all coming back negative.
The other good news that we received was the results from the bone marrow biopsy came back and there is still no sign of the disease, Bill remains in remission. The doctor said that, in his opinion, he does not expect the disease to come back, but only time will tell!!!
If you remember back to the beginning of the blog, with chemo, if you get to remission (which is not a cure) only time will tell if the disease will relapse. The definition of remission is that the disease is undetectible.
Bill has been eating a little more at each meal. He is still getting up frequently during the night to urinate and continues to have pinkish colored urine.
Fluids were ordered daily for another week.
Day 51 – Thursday, December 30, 2010
We got to the clinic at 10:30am for our daily liter of saline. Nothing new at the clinic to report.
This evening before we ate, Bill came out from the bathroom and said the urine was yellowish in color. Could this be the beginning of the end of the BK virus? For the remainder of the night there was very little blood in his urine. Although the color is improving he is still getting up multiple times to urinate.
We received a package in the mail, from my sister Nancy’s family, of gourmet hot cocoa, marshmallows and chocolate candy canes. Thanks Cheney Family.
Today was another milestone – Bill turned on his iPad for the first time since the transplant!!!
Day 52 – Friday, December 31, 2010 – New Years Eve
We got to the clinic at 10:30am for our daily liter of saline. Before we left the clinic Bill experience some pain in his abdomen. The PA came to examine him and believed the pain was from gas. Now that Bill is eating more and more, his bowels are waking up and most probably causing the pain. We will need to watch this new development.
We received a package from William, Bill's son, of Wolferman's english muffins. By far, they are the best english muffins you could ever eat. There are four flavors: Pumpkin Spice, Cinnamon Raisin, Cherry blo0ssom and Everything. A great gift to end the year, you know what I am eating every morning next year! Thanks William and family.
The TPN and the food that Bill has been eating has allowed him to gain some weight. His vitals have remained strong and his blood count is pretty close to normal. As of today he weighed 122 pounds. Each day we see a small improvement in Bill's recovery. Thanks for your continued support, prayers and well wishes.
Happy New Years !!!!
Bill with Dr. Mishra