Post # 57 - How are the kidney's doing? Monday March 21st Bill had blood work done locally to see how the kidney functions were doing. The Creatinine came back at 1.6, which is a big improvement from where it was a week ago. His hemoglobin was also better at 8.2. We tracked his fluid input and output the entire week and we were able to see that the output was more than the input. The swelling in the legs and feet were noticeable less. He was no longer retaining fluid. Wednesday March 23rd Bill had his weekly appointment with the transplant doctor. The blood work looked even better on Wednesday - Creatinine is 1.5. Based upon the tremendous improvement in the kidney function levels it was decided that a nephrology consults was not necessary. The doctor was right, the problem was being caused by the medication. By this appointment Bill had lost a few pounds and was down to 122. He continues to get the Jevity 1.2 Cal liquid nutrition each night via the ng tube. Bill continues to take additional water through the ng tube every day. The doctor felt that we could go three weeks to the next appointment since Bill made significant improvement in the kidney functions. He ordered blood work for the following two Wednesday's to be done locally, so the kidney function could be monitored. Since the tacrolimus has been stopped, there have been no signs of GVHD. Wednesday, March 30th blood work was done at Parrish Medical Center, our local hospital. Hemoglobin is up to 8.7, Platelets are 157, WBC is 3.6, Creatinine is down to 1.3 All of his blood work looks really good. Bill has continued to loss additional weight. He is now down to 119 pounds. In addition to the Jevity 1.2 cal each night via the ng tube, Bill is eating regular food through out the day. He is eating as much as he can, which is limited. His tongue is still showing mild effects from the fungus, which destroys his taste buds. We have tried everything from his favorite foods, to donuts, ice cream, pizza, cheeses, carnation instant breakfast, macaroni and cheese, tortellini, clam chowder, friend chicken sandwiches, carrot cake and many more. He eats what he can. Friday April fools day, I mean April 1st is day 143 post transplant. Another 40 days and we can talk with the Dr. about bring Tweedy home. We miss having him in the house with us. The week-end went well. Bill does not leave the house much. We did manage to get out to the store to food shop on Sunday evening. We like to go late in the evening so there won't be to many people in the store. Bill is maintaining a weight of 119. This Wednesday Bill has blood work at Parrish Medical Center and then our next appointment at Moffitt is on April 13th.

Post #56 - Update on Bill's journey - Kidneys

With everything that is going on in the world (Japan, the Middle East, and in our own lives) we still have to take the time to see the beauty in the world. On my way home one night last week I took this picture from my car at the entrance to our community. It is not uncommon to see a rainbow in the sky, but to see two took my breath away.
Update on Bill, things have gotten worse with his kidneys. His Creatinine is now 2.9 which is three times the normal. The Dr. is concerned about this, since all the tests that he has performed has not provided the cause of the problem. The Ultrasound done last week does not show a change in the condition of the hydronephrosis in his right kidney, so a stent may not be the answer. We have an appointment this week on Wednesday (Dr. feels it can wait until then) with a bone marrow Nephrologist (Kidney specialist). The next step is to possibly have a kidney biopsy. Last Wednesday was a very difficult and emotionally draining day as we are now faced with the unknown again. We will repeat blood work on Monday (tomorrow) to monitor the creatinine level, if it should be higher we will need to get immediate attention. If you recall, the last time Bill’s creatinine was above 3.0 he started to have mental status changes and his systems were starting to shut down due to the toxin’s in his body not being processed by the kidneys and excreted. That is my main concern right now, I don’t want to go back to that dark place. Back then he was on a many more drugs and he had contrast for a CT that put his kidneys over the edge. The Dr. has reduced his medication to lighten the load on the kidneys, and discontinued Tacrolimus (the immunosuppressant drug) which is hard on the kidneys, so I am hopeful.

Stopping the Tacrolimus will allow his immune system to get stronger and fight the virus’ that Bill has been dealing with. Stopping the Tacrolimus also comes with an increased risk of getting graft vs. host disease (GVHD). Throughout the entire process, Bill only had a touch of GVHD in his stomach and it was very light. Clinically he did not get GVHD, so the Dr. is very optimistic that he will not get it now that the Tacrolimus has been stopped.

Since the kidneys functions are showing signs of failing, the Dr. wants Bill to increase is input of fluids each day. Therefore he will be on the ng tube for most of the day getting water when he is not getting the liquid food. He needs to get at least 3 liters of fluid a day (the equivalent of eight and a half 12oz cans of soda). I have created a log for him to track his input and output so we can share with the doctor. The log will also allow us to see if he is retaining more fluid. We are also taking his weight every day at the same time to see if he is retaining fluid. If (emphasis on IF) the kidney goes into failure Bill will need dialysis, the good news is it does not necessarily mean he will be on dialysis forever or need a transplant. There is always the chance that the kidneys will repair itself.

While at the clinic Wednesday Bill has visible signs of blood in his urine and then he excreted a blood clot. The increase in fluids should help prevent an increase of clots. So far through today we have not seen any signs of blood or clots.

Bill’s Hemoglobin is 8.0, which is the borderline for needing a red blood cell transfusion. We have to monitor his breathing and fatigue. If the breathing gets labored or the fatigue increases we will need to get his blood checked and most probably he will need a few units of blood.

The culture on his tongue came back positive for candida (yeast). Bill’s tongue is completely white and he has no taste. He is on an anti fungal, at a reduced dose to protect the kidneys, to clear it up the tongue.

The culture on the sore in his mouth came back negative for herpes, which is great news. The sore is starting to heal.

On a good note, Bill has maintained a weight of 126, and from a transplant perspective his counts are good with the exception of the lymphocytes. Stopping the tacrolimus should help the lymphocytes increase.

Yesterday Bill had a visit from Lue, Kelli, Margy and Mary Ann. We sat outside under the port for about 5 hours and had a nice relaxing time. On the way back from picking up some food for our guests I saw a gator in the retaining pond of the local cracker barrel.

A sign that spring is in the air and water.

Helpful, caring and compassionate technician's at the BMT clinic

Neisha

Maureen

Please continue to let Bill know that you are rooting for him and praying for him. Throughout all of this, Bill has continued to have a positive attitude.

Post #55 - So what happened during the doctor visit on Wednesday?

We made the two hour trip to Moffitt and went to the BMT clinic for blood work. Shortly after we met with the PA and the physician. We discussed all the issues that Bill has been dealing with and got many answers.

A culture of the sores in his mouth were done to determine if the Herpes (HSV) was back. We should have those results in a few days. A culture was also done of his tongue too, it looks like Bill may have a fungal infection there. The doctor was absolutely positive that the fevers that Bill has been having is a direct result of the sores in his mouth. Know that was a big relief, as I was concerned something more serious could have been brewing. Bill has not eaten anything since last Saturday, other than the feeding through the ng tube. On Wednesday his weight was 129, which is great and shows that he is maintaining and not losing.

The Dr. took one look at the ng tube that Bill had in from last Wednesday and said it was the wrong tube and need to be change. The nurse that does the procedure came to the clinic and put in a new ng tube, the original one he had.

The last issue to deal with was the swelling in his legs and feet. The blood work showed that Bills creatinine was 2.0, which is double what Bills base line is and should be. That is the reason for his swelling, his kidneys are not functioning properly. This is the biggest issue that needs to be dealt with. An ultra sound of the kidneys was done and a plan of action will be created from the results. Urine was also obtained. The Dr. thinks the issue may be the same one that we have been watching, which means the solution would be to have a stent put in the tube between his kidney and bladder. We will know early next week.

The visit on Wednesday lasted seven hours in all between tests and appointments, a long day and then a two hour ride back home to Titusville.

Now that we have answers we are both feeling a lot better. Alright, I am feeling a lot better. Being a caregiver and making sure the patient has everything they need to get better puts your guard up. When something changes or matches the symptoms that they tell you to watch for, the tendency is to worry. I did a lot of worrying. I feel much better and can now put my energy to working on what I can which is to help Bill get better.

Due to the issues that have popped up (another bump in the road as the Dr. puts it) we are back on weekly visits to Moffit BMT clinic, so our next appointment is on Wednesday.

Post #54 - Day 97 - 119 Home Sweet Home

The first week of being home went well for us. Bill continued to get the ng feeding each night. On Wednesday February 16 (Day 99) we made our first weekly visit to Moffitt. We have decided not to spend the night, therefore we drive two hours each way on the days we have the appointment. Since Bill was not having any relief from the Bladder issue, the doctor order Cidofovir IV to treat the virus. The treatment requires 1/2 a liter of saline pre treatment, Cidofovir, and 1/2 a liter of saline post treatment. The pre and post treatment is done due to the effect the drug has on the kidneys. Similar to the process we did at home for the Foscarnet. The treatment is done once a week for about four weeks. Bill's blood was taken and the pre treatment saline was started. About a half an hour into the pre treatment, the nurse came in and informed us that Bill's Creatinine was to high and administering the treatment could do more harm than good. The pre treatment was finished and we waited for the doctors visit. The bone marrow biopsy results were not available at this appointment. The Chimersim study did come back and it showed that Bill had 77% donor cells. The doctor indicated that he expected the results to be over 90% at this point in the process, but due to the various set backs Bill has had with the virus' he was not concerned.

Week two at home went well for us. Bill had his weekly appointment with the doctor at Moffitt on Wednesday February 23. Prior to the appointment, Bill was scheduled for a simulated driving test which is performed on a computer. The purpose of the test is to measure response/reaction time to tasks. Bill achieved a marginal fail on the test (just missed passing), which means he has not been released to drive a car. It is important that Bill not drive until he gets released by the doctor as he would not be covered by insurance if something were to happen. From the test we went up to the clinic for the weekly blood test. Once again, since Bill is still suffering with the bladder, an attempt was made to give him Cidofovir. His creatinine level was to high to administer the cidofovir so it was not given. The doctor prescribed a drug called Leflunomide 20mg tablet taken once a day to treat the BK virus. It took a week to get the prescription approved so Bill did not start on it until March 2. The visit with the doctor went well. He decided that since everything else was going well, our visits would be changed to every other week and the ng tube feeding would continue until the next appointment. At that time, March 9, he would assess the need to continue.

Thursday February 24 Bill and I watched the final launch of Space shuttle Discovery. Bill watched on TV, 10 seconds before lift off, I went outside and watched it from our front yard. We can never get tired of watching the beauty of a launch. Titusville was a zoo for several hours after the launch due to the increased number of people that came to catch one of the three final launches. Two more to go before the shuttle program is retired.

The third week home did not go as well as the first two. On Tuesday, March 1, we discovered that the ng tube was clogged and nothing we did opened the tube. We tried everything we could think of, including coke. We gave up at 2:00am in the morning and agreed that we would need to go to the emergency room the next morning. On Wednesday, March 2 we visited Parrish Medical Center, our local hospital (where I work) and they tried everything they could to clear the tube. The doctor said "the tube must come out and be replaced". Bill was not happy, I was not happy either, but we didn't want to lose the momentum Bill achieved with his weight so the tube was replaced.

Friday March 4, Bill noticed that his feet were swollen and he was getting a new sore in his mouth. Since it was new and small we decided to monitor the sore. On Saturday it grew a little more and the feet were still swollen. On Sunday around 11:00am, Bill developed a fever of 100.6 (the magic number for an emergency room visit is 100.5). Since his temperature had been great up until now, he wanted to wait a few hours to see if it would come down. Around 2:00pm he was down to 100.4 and just before bed time he was down to 99.7. Although we did not go to the emergency room I did call the BMT clinic to let them know what was going on to get their advice. They said if the fever continues, which it didn't, Bill would need to get to an emergency room for evaluation.

Monday, March 7, the sore in Bill's mouth grew to the size of a quarter and was causing to much pain for him to eat anything. At around 1:30 in the afternoon, the tape let go on the ng tube and it worked its way about half the length out of his nose. The trouper that Bill is, he pushed the tube back down and re taped it it to his face. When I found out, I once again called the BMT clinic and let them know what was going on to make sure there was nothing that we needed to do. Due to the inability to eat, Bill has started taking the food via the ng tube during the day time as well as the treatment he was getting at night. The swelling in his feet have come down a little.

Tuesday, today March 8, Bill is feeling fatigued, the sore is very painful and his lip is now swollen. We are both happy that the Moffitt appointment is tomorrow so we can see the doctor and figure out what is going on with his condition. As soon as we know anything I will post an updated.

Post #53 - Day 79 through 96
There is a light at the end of the tunnel

Day 79 - Thursday, January 27, 2011
This was a glorious day because we did not need to go to the clinic. I was able to work the entire day without having to pack and unpack several times. Walgreens home infusion delivered a weeks work of Foscarnet and Saline with Magnesium and several weeks of the NG tube feeding solution. Bill's temperate was in the normal range through out the day. We received a call that the triple lumen catheter removal was scheduled for Wednesday, February 2 at 1:30pm.

Started the Foscarnet routine at 8:00pm (remove dose from fridge 2 hours prior) and finished the three IV's around 11:30pm. Since the dose was increased the administration takes about half an hour longer. Friday I will be starting the IV around 7:30pm. Started the NG tube feeding around 10:30pm, which will finish around 8:00am. Bladder and throat are still giving Bill trouble

Day 80 - Friday, January 28, 2011
WBC 4.73 / ANC 3.44 / Creatinine 1.10 / BUN 29.0 / Hemoglobin 9.6 / Platelets 177 / Magnesium ---

Today we had a trip to the BMT clinic for blood work and then down to Radiology for an ultrasound of the kidneys. Finished both and then went home for the day. Started the Foscarnet routine at 7:30pm and and NG tube feeding around 10:30pm.

Day 81 - Saturday, January 29, 2011
Nice day at home, did not have any appointments anywhere. Did the Foscarnet and NG tube feeding routine.

Day 82 - Sunday, January 30, 2011
WBC 5.24 / ANC 4.03 / Creatinine 1.00 / BUN 33.0 / Hemoglobin 9.2 / Platelets 179 / Magnesium ---

The alarm for the NG tube feeding pump went off around 8:00am this morning like is does every morning. I unhooked and went to flush the tube with the water and I could not get the syringe to move. I pushed a little harder and harder until the other opening released and the saline shot across the room and all over Bill, he was not happy. I was in a panic because I thought I broke the line and Bill was going to need to have it re-inserted. Since we were going to the clinic at 10:30am for blood work we figured we would just wait until them to discuss it with the professional. Robert was working today so we asked to have him take a look at the NG tube. I explained what happened and what I did and Robert gave a smirk and asked if they told me to flush the line with anything else other than water. My response was no. Now my mind starts to race and I am thinking there is a Drano like substance that I should have been given to use on a regular basis and I did not remember. Well, did you ever read the jokes about the 101 uses for Coke? Yes, Coke the soda. Robert got a can of coke and work for a few minutes and, presto the line was cleared. Everything was good, I learned something new today. After we left the BMT clinic we made a stop at the store for some diet coke. Robert also told us that we could use the NG tube to give Bill fluids through out the day since he was still having trouble swallowing. I started with diet coke and learned that cold was very uncomfortable and then only used liquids that were at room temperature.

The evening routine of Foscarnet was started at 5:00pm so I could finish by 8:30pm and hit the road. The ng tube feeding was started around 8:30pm, I slowed the rate down so it would not finish before 8:00am. Bill's son William came to stay with Bill so I could go home to Titusville to go to work and attend some meetings.

Day 83 - Monday, January 31, 2011

Today the only appointment that Bill has was PT rehab at noon. Other than that the day went well, William un-hooked the NG tube with no problems and flushed the line.
I got home from Titusville around 7:00pm to start the Foscarnet and NG tube routine and William went home to Deltona.

Day 84 - Tuesday, February 1, 2011
Another day at the apartment with no appointments. Bill is still having trouble with the throat and bladder. Bill is now starting to show interest in watching TV, he is addicted to HGTV house virgins and international as well as the cooking channel. Today we tried carnation instant breakfast in the tube. Walgreens home infusion delivered the next weeks dose of Foscarnet and Saline with Magnesium.
Started the foscarnet routine at 7:30pm and the NG tube feeding at 10:30pm

Day 85 - Wednesday, February 2, 2011
WBC 5.79 / ANC 4.54 / Creatinine 1.0 / BUN 39.0 / Hemoglobin 9.2 / Platelets 187 / magnesium 1.8

Today is the day that the central line (triple lumen catheter) is being removed. Bill was not happy because they only use a local anesthetic. Needless to say the procedure went well, Bill felt nothing. The Dr. took her time and slowly removed the line.

We then went to the clinic for blood work and they accessed the power port to draw blood and then left the access line in so I could use it at home for the Foscarnet routine. The visit with Dr. Ayala went well. Dr. Ayala reduced the number of visits for blood work to once a week, just before our appointment with him.

Now that going home is getting closer we asked about Tweedy and when he would be able to come home and live with us. The doctor said it would be at least another three months before he would consider it.

Our Friend Max and Shirley came to Florida for a month from wintery cold Buffalo, NY. As they were leaving for Florida, Max developed a cough and was feeling fatigued. After they arrived in Florida he developed a fever and ended up in the emergency room for some testing to check for infections. Everything came back normal. As we skyped with Max and Shirley, every time Max spoke he started to cough. We kept them up to date with our progress and were now concerned with his condition. What this has taught us is that even after a year and several months post transplant Bill will need to keep his guard up and take all the same precautions we are taking now. Being out of the woods is something that will be a long time in coming.

Day 86 - Thursday, February 3, 2011
PT at noon and then the Foscarnet and NG tube feeding at night.

Day 87 - Friday, February 4, 2011
2:30pm appointment with the GI doctor to discuss the results of the ultra sound of the kidneys. The report reads "There is persistent moderate right-sided hydronephrosis, similar to previous exam dated 12/8/10" The doctor explained that the kidney looks the same, it didn't get any better, but it also did not get worse, which is a good sign. We are on a wait and watch schedule for the next three months. The ultra sound will be repeated in May 2011.
The GI doctor stopped the Pyridium and oxybutynin because Bill told her it didn't seem to be helping any. They were replaced with Hyoscyamine 0.125mg every four hours and Vesicare 5.0mg once a day.

Did the foscarnet and NG tube feeding routine.

Day 88 - Saturday, February 5, 2011
Nice day at the apartment, did the Foscarnet and NG tube feeding routine.

Day 89 - Sunday, February 6, 2011
Another nice day. Bill is starting to feel a little relief in his throat. We have been here before, so we didn't get excited as it would need to stay that way and continue to get better for several days before we would say it is better.

Started the Foscarnet and NG tube feeding early as I was going to Titusville again to attend several meetings. Bill's sister Margy came to relieve me for Monday. I only gave Bill half the dose of the NG tube feeding because his bone marrow biopsy was the next day and he was not to have anything to eat past midnight.

Day 90 - Monday, February 7, 2011
WBC 4.00 / ANC 3.4 / Creatinine --- / BUN --- / Hemoglobin 8.5 / Platelets 170 / Magnesium ---
Today was a long day for Bill. The bone marrow biopsy was scheduled for 1:00pm, but didn't start until around 3:00pm He had nothing to eat since midnight the night before.

I returned around 7:15pm and started the Foscarnet and NG tube feeding routine. Margy left to return home to Deltona.

Day 91 - Tuesday, February 8, 2011
No appointments today, did the Foscarnet and NG tube routine.

Day 92 - Wednesday, February 9, 2011
PT rehab at noon. No other appointments today.

Today is the last dose of Foscarnet as Bill will have reached the therapeutic level. The doctor will examine Bill on Thursday and determine if more Foscarnet would be needed.

Day 93 - Thursday, February 10, 2011
WBC 3.81 / ANC 2.87 / Creatinine 1.2 / BUN 30.0 / Hemoglobin 8.1 / Platelets 167 / Magnesium 2.1
Today is a big day for Bill. In addition to the PFT - Pulmonary Function test, the topic of discussion will be - when will we be able to go home.

The PFT went well. one of the levels were lower than the baseline obtain prior to the transplant. The technician indicated that this was probably due to the Hemoglogin being lower now than three months ago.

Blood work has been trending down the last few tests. Hemoglobin is at 8.1, if it reaches 8.0 or below Bill will require a transfusion of red blood cells. We discussed Bill's throat which has continued to improve so the Dr. did not continue Foscarnet treatment. Instead Bill was put back on Acyclovir 800mg, 1 tablet twice a day as a precaution. Since Bill has not had any signs of GVHD his tacrolimus dose was decreased to 1.5mg twice a day We discussed Bill's bladder and the frequent urination and burning. The Dr. agreed that a BK virus level was needed and some additional blood work. If the results were not any better than they were in December he was going to treat the BK virus with Cidofovir IV once a week for four weeks. When Bill was in the hospital he received one dose of Cidofovir. Since it was around the time his kidneys were failing the treatment was discontinued.

Best news of the day, the doctor told us we could go home. Since we were down to one day a week to visit the BMT for blood work and to visit with him, he felt we could spend the week at home instead of in the apartment. He will continue to see Bill once a week to monitor his throat and the bladder/ BK virus issues.

After the appointment Bill returned back to the BMT clinic for his first two baby shot vaccinations. Today Bill received the following:
-Pneumococcal conjugate vaccine (Prevnar) 0.5ml intramuscular (IM)
-Influenza virus vaccine 0.5ml IM

The next round of vaccinations are scheduled for May 2011:
-Pneumococcal conjugate vaccine 0.5ml IM
-Inactivated Polio Virus (IPOL) 0.5ml IM or Subcutaneously (subQ)
-Hepatitis B vaccine (Engerix B) 1ml IM
-Diptheria/Tetanus/acellular pertussis (DTaP) 0.5ml IM
-Haemophilums Influenza type B (HibTITER, Hib Conjugate) 0.5ml IM

More shots in Nov 2011, May 2012 and Nov 2012

Did the NG tube feeding routine and started to get things organized for packing to go home.

Day 94 - Friday, February 11, 2011 - We are going home

Work up and did a few things for work and then signed off for the the day and took a vacation day to pack. packing took most of the morning. I took a break and ran a few errands, picked up meds and then returned for lunch. After lunch (2pm) I started to pack the car. It took me about an hour and a half to get everything into the car. I had the most trouble getting the IV poll into the car since it could not be taken apart. I packed every crease and crevice of the car, from the floor to the roof, front to back. I left a small space for Bill to sit in the back seat. I didn't think to take a picture, but a picture would have been worth a thousand words. After packing the car and dropping off the garbage I took a break before we left for home. We hit the road at 5:30pm and did have traffic for the first 20 minutes of the trip. After the traffic let up it was clear sailing to Titusville. We got home around 7:45pm and I proceeded to unload the car.

It was so good to be home, but especially with Bill. I could see a change in him just by being in his home. We ate some dinner, started the NG tube feeding routine and then went to bed in our beds.

Day 95 - Saturday, February 12, 2011 - Happy Birthday Gary

Today was an entire day of unpacking and putting everything away. Our neighbor, Mae dropped off the mail and the keys to the mail box. It was a learning experience to be back home. We had to search for things we could not remember where we stored them.

It was good to be home. Started the NG tube feeding routine

Day 96 - Sunday, February 13, 2011

Another day of unpacking, setting up the computers and paying bills. Bill took a walk and when we returned he was very tired and had to take a nap. He may have pushed a little to hard.

Tomorrow will be the first day since Nov 2, that Bill will be home alone. I am only 15 minutes away and we have friends, in the community where we live, that can come over to help if Bill needs it.

Now that we are home, I will be updating the blog as things happen and will not be reporting day by day. It is good to be home!!!

Our next visit to Tampa, BMT clinic is Wednesday, February 16, 2011. We will be going back to Tampa every Wednesday for the next four to eight weeks.

Thanks for all your support during our journey, we still have a long way to go, yet we have come so far.

Post #52 - Day 72 through Day 78

Day 72 - Thursday, January 20, 2011
WBC 4.05 / ANC 2.99 / Creatinine 0.9 / BUN 23 / Hemoglobin 10.1 / Platelets 137 / Magnesium 2.1

First thing in the morning, as soon as the ng tube feeding is complete, I flush the line with 30cc's of saline. Today Margy took Bill to the BMT clinic for his morning dose of Foscarnet. I went to Orlando to attend a Healthcare Financial Management Association (HFMA) two day seminar. Bill is continuing to eat food even though his throat is hurting. I returned back to Tampa to administer Bill's evening dose of Foscarnet and tub feeding.

Day 73 - Friday, January 21, 2011
WBC 3.24 / ANC 2.69 / Creatinine 0.9 / BUN 24 / Hemoglobin 9.7 / Platelets 133 / Magnesium 2.2

The routine today is pretty much the same as it was yesterday. When I returned from the seminar Margy left to return home to her husband Gary, in Deltona, FL. Home administration of Foscarnet and ng feeding is going well.

Day 74 - Saturday, January 22, 2011
WBC 4.0 / ANC 3.28 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 137 / Magnesium 2.1

We have fallen into a routine now. Approximately 7:30am the ng feeding ends with loud beeps from the pump. I remove the tube and flush the line. Next we tackle breakfast. Bill has been eating cereal in the morning. Then we are off to the BMT clinic for our morning dose of foscarnet at 9:00am. We are usually done between 12:30pm and 1:00pm. Off to the store to pick up some food supplies and then back to the apartment for lunch. Around 6:00pm I take the foscarnet and pre and post saline out of the fridge so it can reach room temperature. I then prepare dinner. Believe it or not, Kraft macaroni and cheese is still the food of choice. At 8:00pm I start the pre hydration with saline for one hour. At 9:00pm the foscarnet is started and runs for one hour. At 9:30pm I prepare the bag of food to start the ng feeding. Four cans of Jevity 1.2 cal is put in the bag that is then attached to the EnteralLite Infinity pump. The pump runs at 100ml per hour. At 10:00pm the post hydration with saline is started and runs for one hour. At 11:00pm we are done with the infusion, I flush the line with Saline and heparin. By 11:30pm we are in bed.

Monday is mail day. On her way to work, Barbara Diesel, stops at the Great Outdoors to pick up our mail from Bill and Mae (Bill and Mae empty our mail box each day). Barbara hands the mail off to David Gunsteens who on his way home delivers the mail to where ever we are in Tampa. If we were in the hospital, David came to the hospital. If we are in the apartment he comes to the apartment. Bill and Mae, Barbara and David don't think anything of it and are happy to help. To me and Bill they are providing an unbelievable service. I cannot put into words the gratitude we have for them. They never missed a week. Thank you.

Day 75 - Sunday, January 23, 2011
WBC 3.76 / ANC 2.79 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 135 / Magnesium 2.0

Same as Saturday with one difference. The bladder spasms are getting worse. The PA prescribed Phenazopyridine - Pyridium. Phenazopyridine relieves urinary tract pain, burning, irritation, and discomfort, as well as urgent and frequent urination caused by urinary tract infections, surgery, injury, or examination procedures. However, phenazopyridine is not an antibiotic; it does not cure infections. This drug causes the urine to turn orange.

Day 76 - Monday, January 24, 2011
WBC 4.28 / ANC 3.38 / Creatinine 0.9 / BUN 22 / Hemoglobin 10.3 / Platelets 152 / Magnesium 2.1

Same as Saturday with one difference. The pain in the throat is starting to get worse instead of better. The mouth and lips are completely healed. We decide to give the throat more time and wait until our appointment on Wednesday. The ups and downs can be very discouraging.

Day 77 - Tuesday, January 25, 2011
WBC 4.31 / ANC 3.29 / Creatinine 0.9 / BUN 26 / Hemoglobin 9.7 / Platelets 158 / Magnesium 2.1

Same as yesterday. Administered the last dose of foscarnet that we had in the house.

Day 78 - Wednesday, January 26, 2011

Today was different. We did not need to be at the clinic for our morning dose of foscarnet. Today is our appointment with Dr. Ayala. Things to discuss are: changes in foscarnet, bladder spasms, throat pain, ng feeding, weight and the all important day 100!!!

First blood work was done. We then met with the nutritionist to discuss how Bill is doing with food and what we can do to get more calories into his body. We then met with the Dr.

• Blood work is slowing coming back.
• Weight, at 124 lbs is up from the low of 113 lbs but still short of the 137 lbs pre transplant.
• Ng feeding will continue for another three to four weeks. Since discharge last week, Bill is eating and getting ng feeding but is not gaining any additional weight. There is concern that stopping the ng feeding will have an negative impact on his progress and health.
• Foscarnet will continue for another two weeks, at one dose a day. The dose will be increased from 1,272 mg IV to 2,520mg IV. The dose for today was done in the BMT infusion center. Tomorrow morning Walgreen's infusion will deliver the next weeks worth of treatment.
• The next bone marrow biopsy will be around day 90 along with some vital organ testing to see how Bill compares to his baseline obtained prior to transplant.
• The doctor is putting in an order to have the triple lumen catheter removed by the end of next week. He is starting the process of getting Bill ready to move back home home to Titusville.
• If everything continues to go as it is today, Bill will be on track to go home home by day 100. He is still dealing with the virus' and has a long road to recovery from what they are doing to his body. When we go home home we will back to Tampa for a weekly appointment with the Dr. Bill will also continue to stay on the ng feeding in Titusville. Since Bill's case turned out to be more complicated than what they normally see, he will need to follow up weekly to ensure there are no new complications and the current virus' are behaving and getting better.
• mycophenolate mofetil - Cellcept is being discontinued as of tonight. This drug is used to prevent GVHD. It prevents GVHD by suppressing the immune system. This suppression could possibly delay the body from getting strong enough to heal the virus'. Stopping Cellcept around day 78 is normal since Bill has not had any signs of GVHD, other than the touch he had in his stomach.
• Starting today, we are now on a three day a week schedule to have blood work done. Since foscarnet will be administered at home once a day, we will only go to the BMT clinic on Sundays, Wednesdays and Fridays. On Wednesday we will meet with the doctor.

Tonight only had to hook up the ng feeding, slow night.

Tomorrow, Day 79, will be the second day since November 2 that we will not visit BMT clinic / Moffitt Cancer Center. If you do the math that is 87 days we have been here, 85 of which have been in some nature at Moffitt. Tomorrow will be like going on vacation.

Post # 51 – Day 54 through Day 71

Day 54 – Sunday, January 2, 2011

As we have done every other day, we started off the day with our daily liter of fluid. When we arrived at the clinic we asked the nurse if they could page the PA on call so we could discuss our concern with the sores in Bill’s mouth and his declining ability to eat. The PA did not hesitate to take action; Bill was taken off of Famvir and put on Valacyclovir (Brand name: Valtrex) 1000mg 1 tablet 2 times a day. Valacyclovir is used to treat herpes zoster (shingles), herpes Labialis (Cold Sores) and herpes simplex. The pill is big and dark blue. It is by far the largest pill I have ever seen. Bill and I looked at the pill and wondered, with the sores in his throat and esophagus, how he was going to swallow it.

Day 55 – Monday, January 3, 2011

Off to the clinic for our daily liter of fluid. Bill is starting to get some relief in his mouth due to the switch to Valtrex. We had a visit from the nutritionist because we are concerned with the weight lose Bill has had. He is now weighing 117 pounds. The nutritionist believes that Bill is not getting enough calories to gain weight. We were instructed to document what Bill is eating and look up the caloric value to ensure he is getting approximately 2000 calories a day. Not much else to report this day.

Day 56 – Tuesday, January 4, 2011
WBC 2.51 / ANC 2.31 / Creatinine 1.2 / BUN 16 / Hemoglobin 9.1 / Platelets 122 / Magnesium 1.3

Bill is still waking many times during the night and he continues to have blood in his urine. His mouth was feeling better and he wanted to eat. He had 7.5 oz of corn beef hash, 2 eggs fried, instant carnation breakfast in whole milk and ½ an English muffin with butter. Not bad for someone that has not been able to eat for a long time. Another trip to the clinic for our daily liter of fluid. Magnesium was low so Bill received a bag and his dose at home was increased from 2 tablets 3 times a day (6) to 3 tablets 3 times a day (9). Bill continued to eat well for the remainder of the day and reached the 2000 calories. For those of you that know Bill’s eating habits (Bill always took care of himself and ate healthy) will find it hard to believe that his food of choice is Kraft macaroni and cheese (original). Bill had occupational therapy in the apartment with Meg from the home health agency.

Day 57 – Wednesday, January 5, 2011
WBC 2.68 / ANC 2.49 / Creatinine 1.1 / BUN 18 / Hemoglobin 8.8 / Platelets 124 / Magnesium 1.8

Bill received his daily liter of fluid today. The most amazing thing happened this morning, Bill’s urine was clear. Although not easily seen, there was very little sediment of blood. It is amazing how yesterday it was red and today normal. Bill is continuing to eat well as the pain decreases. Our Weekly appointment with Dr. Ayala went well. Although his weight has dropped to 116, the doctor is happy with how Bill is responding to the Valtrix and Bill’s over all condition. He believes now that Bill is eating the weight will start to come back.

We received the results from the Chimerism study done on the bone marrow and peripheral blood. A chimerism study measures the state in which donor cells have durably engrafted in the recipient. The peripheral blood was drawn on December 8th 2010 and measured CD3 and CD33.

According to Wikipedia:
CD stands for Cluster of Differentiation

CD3 (immunology), an antigen, cluster of differentiation protein (immunology), part of the T cell receptor (TCR) complex on a mature T lymphocyte.

CD33 is a transmembrane receptor expressed on cells of myeloid lineage. It is usually considered myeloid-specific, but it can also be found on some lymphoild cells. It binds sialic acids, therefore is a member of the SIGLEC family of lectins.

I don’t really understand what this all means, but I do know the results were good. The CD3 post transplant engraftment analysis revealed 77% donor cells and 23% patient cells. The CD33 post transplant engraftment analysis revealed 100% donor cells and 0% patient cells.

The bone marrow sample was obtained on December 15th, 2010 and measured the bone marrow composition. The bone marrow post transplant engraftment analysis revealed 78% donor cells and 22% patient cells. Dr. Ayala informed us that Bill is right on target. The results are exactly what he expected to see at this point post transplant. So far Bill has not taken on any of Ed’s traits.

If things continue to move in the same direction Bill can look forward to having the triple lumen catheter removed in about two weeks. Bill was taken off of Budesonide (Entocort) which is used to treat GVHD in the gut. Bill will be reducing his dosage of Mycophenolate Mofetil (CellCept) from 2 tablets two times per day to 1 tablet two times a day. CellCept is an immunosuppressant. The doctor also wants to start to taper off on the fluids so Bill will be reduced to three days a week (Sunday, Wednesday and Friday)

The appointment with Urology for a consult regarding the kidneys was scheduled for Friday, January 7th at 8:50am. Bill had physical therapy in the apartment with Joni from the home health agency. Bill continues to eat well coming close to 2000 calories.

Day 58 – Thursday, January 6, 2011

Bill is starting to notice that the pain in his mouth and throat is starting to increase again. He has not been able to eat as much as he was eating the last few days. We are hoping that the pain is a temporary setback and will improve in the next day or two. Today is the first day that Bill did not go to the clinic for fluids. Bill had a follow up appointment at the clinic so it was not a free day. Bill had occupational therapy in the apartment with Meg from the home health agency.

Day 59 – Friday, January 7, 2011

The appointment with the urology doctor went well. The Dr. does not want to put a stent in at this time. The left side of the kidney has improved since the last study. Since the creatinine and BUN levels are doing well, the Dr. believes that the right side has a good chance of improving as well. Now we are off to the BMT for the Friday liter of fluid. Instead of over three hours, the infusion will be over two hours. The pain is not getting better, it is getting marginally worse. Bill’s food intake is also decreasing. The PA tells us to give it a little more time.

Day 60 – Saturday, January 8, 2011

Today was like a vacation. This is the first day since November 2nd that we did not need to go to the hospital or clinic. I know I felt like a new person, it was wonderful!! The pain is continuing to get worse, Bill is hardly eating anything. We had visitors; his caregivers from Titusville spent a few hours. The urine is still clear and the number of times he wakes up during the night is down from 20 to about 13.

Day 61 – Sunday, January 9, 2011

This morning Bill was in a lot of pain. We decided it was important that we spoke with the PA on call in the clinic to see if there was something that could be done for the pain. Bill was eating less and less and losing weight. Today was the first day of our three day a week cycle which means Bill will have Monday, Tuesday, Thursday and Saturday off. We got to the BMT clinic for our daily liter of fluid and asked to have the PA paged. The PA on call was Christy, one of Dr. Ayala’s PA’s so we knew we were in good hands. She took one look at Bill’s lip, mouth and throat and agreed the Valtrix was not working. Christy decided that Bill needed to be switched to 500mg of IV Acyclovir twice a day for seven days. The first dose was administered today.
This evening Bill’s sister Margy came to Tampa to relieve me so I could go back home to work. I had not been to work in Titusville since November 1st 2010.

Day 62 - Monday, January 10, 2011

Today I spent the day at work in Titusville. It was great to be back with my work family. After work I went to visit with Wendy and Scott and I got to see our bird Tweedy. The bird was happy to see me and was happy to be out of his cage to stretch his wings.
Margy took Bill to the BMT clinic in the morning and in the late afternoon for his two doses of IV Acyclovir. Still no relief and still not eating much.

Day 63 - Tuesday, January 11, 2011

I spent a second day in Titusville and in the evening I came back to Tampa. I was happy to see Bill. Margy took him for his two treatments and he was still not feeling any relief. The hospital order home health to come out to the house on Wednesday to train me on administering the IV Acyclovir so Bill did not have to go back to the clinic twice a day. Meg came to the house for a session of OT.

Day 64 – Wednesday, January 12, 2011
WBC 3.13 / ANC 2.35 / Creatinine 1.5 / BUN 22 / Hemoglobin 9.0 / Platelets 127 / Magnesium 1.7

At 8:00am sharp the home health nurse came to the house and I received my training. The nurse had me speak every step in a trial run to make sure I retained the process. I then did my first infusion. Bill did not eat anything for breakfast, the pain was too much. After the infusion we headed out to the BMT clinic for our Wednesday liter of fluid. Bill seemed to be losing more weight, our observation was confirmed when they did his vitals. Bill was now down to 113 pounds, 24 pounds less than pre transplant. Since Wednesday is our day to meet with Dr. Ayala we were eager to hear what his plan of action was. Christy, Dr. Ayala’s PA came to see us first. She asked the usual questions and did an exam. When she looked in Bill’s mouth she could see the IV Acyclovir was not working. When she returned with Dr. Ayala they only said on sentence “We are going to have to admit you”. A lot goes through your mind in that moment. How serious is it and what are they going to do to turn this around.

The plan of action was to put Bill on Foscarnet, TPN and then insert a feeding tube through his nose. The Dr. felt he would be discharged by the week-end. Foscarnet 1272mg IV twice daily, 250ml of saline before administration and 250mg saline after.

From Drugs.com - RENAL IMPAIRMENT IS THE MAJOR TOXICITY OF Foscarnet SODIUM INJECTION. FREQUENT MONITORING OF SERUM CREATININE, WITH DOSE ADJUSTMENT FOR CHANGES IN RENAL FUNCTION, AND ADEQUATE HYDRATION WITH ADMINISTRATION OF Foscarnet SODIUM INJECTION, IS IMPERATIVE. (See ADMINISTRATION section; Hydration.)
SEIZURES, RELATED TO ALTERATIONS IN PLASMA MINERALS AND ELECTROLYTES, HAVE BEEN ASSOCIATED WITH Foscarnet SODIUM INJECTION TREATMENT. THEREFORE, PATIENTS MUST BE CAREFULLY MONITORED FOR SUCH CHANGES AND THEIR POTENTIAL SEQUELAE. MINERAL AND ELECTROLYTE SUPPLEMENTATION MAY BE REQUIRED.
Foscarnet SODIUM INJECTION IS INDICATED FOR USE ONLY IN IMMUNOCOMPROMISED PATIENTS WITH CMV RETINITIS AND MUCOCUTANEOUS ACYCLOVIR-RESISTANT HSV INFECTIONS.

All of the nurses were happy to see us, but not happy to see that Bill was being readmitted. We were in room 3729, which was directly below the room that the transplant was done in. Bill was given his first dose of foscarnet with no issues and all of his meds were changed to IV or liquid since he was not able to swallaw again. I went back to the apartment to get his memory foam, and some toiletries. I returned, got Bill ready for bed and returned to the apartment for the night.

Day 65 – Thursday, January 13, 2011 – Happy Birthday Stephan
WBC 1.99 / ANC --- / Creatinine 1.4 / BUN 17 / Hemoglobin 7.80 / Platelets 88 / Magnesium ---
It seems Bill is somewhat of celebrity. Dr. Mishra heard he was back and stopped by to see as well as several of the nurses (Nancy, Jen, Serena and Michelle). Since Bill’s hemoglobin was less than 8.0 he received two units of blood. I could not understand why the levels would drop so much from one day to the next so I asked the Dr. when they rounded. Dehydration can inflate the blood values and they believed this was what happened with Bill. TPN was started in the evening.

I could tell that Bill wanted me to stay with him, so I went to the apartment to get my stuff and stayed in the room with him.

Day 66 – Friday, January 14, 2011
WBC 2.12 / ANC 1.58 / Creatinine 1.2 / BUN 13 / Hemoglobin 9.7 / Platelets 92 / Magnesium 1.4

Today magnesium was added to the pre hydration since Bill is not taking the pills. Bill is starting to have some relief on his lips and in his mouth. He was scheduled for an endoscopy to see what the esophagus looked like and to compare to the first endoscopy. During the endoscopy a feeding tube was inserted through the nose. After the procedure we spoke with the physician and he indicated that the ulcers are pretty bad, with one about a half an inch wide going all around the esophagus.

From Wikipedia - A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing. The state of being fed by a feeding tube is called gavage, enteral feeding or tube feeding. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities. A variety of feeding tubes are used in medical practice. They are usually made of polyurethane or silicone. The diameter of a feeding tube is measured in French units (each French unit equals 0.33 millimeters). They are classified by site of insertion and intended use.

Bill received a nasogastric feeding tube. A nasogastric feeding tube, or "NG-tube", is passed through the nares (nostril), down the esophagus and into the stomach.

Day 67 – Saturday, January 15, 2011
WBC 1.89 / ANC 1.42 / Creatinine 1.0 / BUN 13 / Hemoglobin 10.3 / Platelets 83 / Magnesium ---

Bill continues to get relief on his lips and in his mouth. The throat is not healing as quick. We are happy to see that Bill’s creatinine is coming down instead of going up. So far after 5 doses of foscarnet, Bill’s renal function is doing great. The enteral feeding is scheduled to begin today. It starts at 20ml per hour and then every six hours it is increased 10ml until Bill is up to 60ml per hour. The TPN will be stopped in the evening as the enteral feeding is ramped up. The Dr. informed us that Bill would probably be discharged on Tuesday, since Monday was a holiday creating difficulty getting everything set up for home health.

We had visitors – Barbara Diesel and Nancy Rhinelander with her husband Marty. Both Barbara and Nancy work with me in Titusville.

Day 68– Sunday, January 16, 2011
WBC 2.61 / ANC 2.04 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.5 / Platelets 88 / Magnesium 1.5

Today was a quiet day. Bill is tolerating the enteral feeding very well at 60ml per hour. Starting today he will ramp up to 75ml per hour in preparation for going home. The rate while home will be 85ml per hour the first night and then 100ml per hour for the remainder of the time Bill is on the feeding tube. At 100ml per hour Bill will be done with his feeding in 10 hours so he can disconnect prior to leaving for his daily visit to the BMT clinic.

Day 69 – Monday, January 17, 2011
WBC 2.58 / ANC 2.07 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.8 / Platelets 94 / Magnesium 1.8

Today is our last day as an inpatient. Bill is tolerating the foscarnet and enteral feeding like a pro.

Day 70 – Tuesday, January 18, 2011
WBC 2.51 / ANC 2.26 / Creatinine 0.8 / BUN 19 / Hemoglobin 9.8 / Platelets 97 / Magnesium 1.5

All the plans were made. Bill would get his morning and evening dose of foscarnet while in the hospital and then starting Wednesday he would get the morning dose in the BMT clinic and I would do the evening dose. The enteral feeding food and supplies were to be delivered around 7:00pm with a home health nurse coming to do the training. Bill was discharged at 6:00pm. We met the nurse shortly after 7:00pm, the training went well and I did my first administration of enteral feeding.

Day 71 – Wednesday, January 19, 2011
WBC 3.27 / ANC 2.52 / Creatinine 0.8 / BUN 22 / Hemoglobin 10.6 / Platelets 128 / Magnesium 1.5

We went to the BMT clinic at 9:30am for the morning dose of foscarnet. Afterwards came home and got things ready for the medicine delivery and home health appointment for training. Bill had some soup for lunch and a small amount of gnocchi for dinner. The mouth and lips look great. Bill is still having pain from the esophagus.

I was happy when I saw the meds because they were the same delivery method as the Acyclovir IV was. Each dose is in a pressurized Homepump Eclipse. The enteral feeding and the foscarnet administration went well. Margy came this evening so I could leave in the morning to go to a seminar. Margy will stay Friday as well, since the seminar is two days.

Homepump Eclipse® Infusion System
The Homepump Eclipse Infusion System product line has the widest range of sizes and flow rates, making it an ideal choice for IV Antibiotic delivery. The market leader in elastomeric technology, Homepump Eclipse provides many benefits.
Features & Benefits
• Reduces nursing labor by reducing patient teaching time and cutting down on unscheduled nursing visits
• Compact size makes storage easier, both in the pharmacy and the patient’s home with easy disposal in standard "Sharps" containers
• Patented multi-layer elastomeric membrane, assures outstanding performance and reliability
• Easy for the patient to learn and use. Just attach to the IV access site and open the clamp

Post #50 - Day 53 - Saturday, January 1, 2011 - Happy Birthday Michael Cosentino

The mornings are tough for Bill due to the lack of sleep during the night. The number of times he gets up is about the same. The urine continues to show small signs of improvement. We got to the infusion center at 10:30am for our daily liter of saline. We had Robert for our nurse this morning. Robert is one of our favorite at the BMT. He is soft spoken, gentle, compassionate and friendly. Since Bill has been Robert's patient before, Robert anticipates Bill's needs and brings the items that he knows Bill will request. Kudos to Robert!!!

The pain in the abdomen that Bill had the last few days seems to be gas. Now that he is eating a little his bowels are getting a work out. We will continue to monitor the pains for any changes.

This morning, Sunday, Bill mentioned that the sores in his mouth are not improving with the increased dose of Famvir. It seems they are coming back instead of getting better. If this continues he will not be able to eat again. We will discuss this with the nurse at the clinic this morning.

I try my hardest to make each post meaningful, informative and clear. Sometimes what I write is clear to me, but conveys a different message to the reader. My last post discussed the results of the bone marrow biopsy, that the test could not detect the disease. (I have edited the post to be less confusing). Although this is positive news, it does not mean the journey is over. The word "CURED" has not been used yet. We still have a very long road ahead of us. Bill has a minimum of another 46 days that he needs to remain in Tampa. The reason this is required is his immune system is young and immature the therefore his body is susceptible to various infections; viral, fungal, Bacterial. Bill has already had two viral infections and a touch of GVHD in his stomach. As you have read with the last fever, the BMT take them very serious. A fever that goes undetected, and untreated could be fatal. We take Bill's temperature at home several times a day. Once Bill is discharged from living in Tampa (day 100 we hope) he will still be under heavy precautions. He will need to avoid public settings, crowds, continue the food restrictions and stay away from anyone that has a cold or was near someone that had a cold. He will need to avoid anyone that has had a live vaccine for 6 weeks. We will require anyone that enters our home to use hand sanitizer and remove their shoes. He will continue to see the doctor in Titusville weekly and visit Moffitt on a regular basis. The one year mark is the first real milestone that we can truly celebrate and we will. The bone marrow biopsy done then will be a better indication of the future.

There are a few links to blogs by others, Under other TPLL blogs, that have had Bill's disease and are still on their journey. Max (TPLL support net) is in approximately month 15 post transplant and is doing great. His doctor just released him to travel from Buffalo to Florida, congrats to Max; and to Shirley for being a great caregiver. I can speak first hand and say that she had her work cut out for her and she did a great job. Mark (Curing Vancura) is in the second part of his first year post transplant. A month ago he spent a month in the hospital with pneumonia. The doctors have asked his sister to harvest more stem cells for a possible second transplant. We wish Mark well in this new year and nothing more than health and progress towards a non hospital/clinic existence. Please feel free to click on those links and read their blogs.

We are on the road to recovery, but as our doctor has said many times, "you will hit many bumps in the road and we will deal with each one as we hit them". We continue to stay positive and do what we are told to ensure that Bill continues on this positive journey.

Thanks for reading and please do provide feedback if something is not clear.

Post # 49 - Day 33 through Day 52 – Happy New Year!!!

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 !!!!

Post # 48 - Day 14 through Day 32

I would like to apologize for the lag between posts. As you read you will understand why I have not been able to post on a regular basis. For all those future caregivers, I must say without hesitation that this is by far the most difficult thing I have ever done in my measly 46 years. Being a caregiver is a full time job and then some. It is not just being there for the patient, it is being an advocate for the patient. There have been so many times where my being there for Bill has made the difference in the care that he is receiving. It could be someone such as a sitter that is impatient with Bill or doing things that will agitate him and suggesting solutions that allows everyone to win. Or understanding what he is trying to say when no one else can make out the words with the mucucitis and swollen tongue. During the delirium Bill would say things that would make no sense to anyone else, but I knew exactly what he was talking about and was able to respond. Those who have previously been caregivers, I take my hat off to you. You tried to warn me to have a support system, a back up plan and to take care of myself or I would be of no use to Bill. I listened, but waited to long to cry for help (always my nature). There have been days that have gone by and I don't remember them, I have reached exhaustion on more than one occasion. Enough about me, now on to Bill.

Day 14 - Tuesday, November 23, 2010
Today was the first day that Bill's Absolute Neutrophil Count (ANC) was above 1,000, the actual count was 1,080. Two consecutive days above 1,000 and it is considered a successful engraftment. His Creatinine (2.0) and BUN (40) were also coming down which was good news. Bill is still not able to eat or drink, all meds are administered via IV.
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Day 15 - Wednesday, November 24, 2010
A day to celebrate!!!! This is the second consecutive day that Bill's ANC is above 1,000, the actual number is 1,840. Due to the holiday week-end coming up, they gave us the keys to the local apartment that we will be renting. There was a possibility that Bill could be discharged during the week-end and the housing department was closed Thursday (Thanksgiving) through Sunday. It was nice to have an end of sleeping in a hospital room in sight. As of today we have spent 7 days pre-transplant and 15 days post-transplant for a total of 22 days. Creatinine (1.9) continued to come down, the BUN (43) went up slightly.

Bill started taking Leflunomide 10mg tablet - The label use for this drug is to treat rheumatoid arthritis. There have been recent studies regarding the use for BK virus.

From Wikipedia - The cornerstone of therapy is reduction in immunosuppression. A recent surge in BKVN correlates with use of potent immunosuppressant drugs, such as tacrolimus and mycophenolate mofetil (MMF) (CellCept). Studies have not shown any correlation between BKVN and a single immunosuppressive agent but rather the overall immunosuppressive load.

No guidelines or drug levels and doses exist for proper reduction of immunosuppressants in BKVN
Most common methods:
1.Withdrawal of MMF or tacrolimus
2.Replacement of tacrolimus by cyclosporine
3.Overall reduction of immunosuppressive load
4.Some cyclosporine trough levels reported to be reduced to 100-150 ng/ml and tacrolimus levels reduced to 3-5 ng/ml

The rationale behind using leflunomide in BKVN comes from its combined immunosuppressive and antiviral properties.

Day 16 - Thursday, November 25, 2010 - Happy Thanksgiving
WBC 4,010 / ANC 1,900 / Creatinie 1.5 / BUN 36 / Hemoglobin 9.3 / Platelets 187
Thanksgiving was a very nice, quiet and restful day. We started the day by watching the Macy's thanksgiving day parade and then when on to read a book, nap and watch move TV. I would like to thank David Gunsteens and Barbara Diesel for their invitations to join their families for dinner. I wanted to go, but did not have the energy to leave and didn't want to leave Bill alone. We did share a hospital turkey dinner with all the fixings. The continuous bladder irrigation was stopped.

Day 17 - Friday, November 26, 2010 - Mike saw Harry Potter and the Deathly Hallows
WBC 6,190 / ANC 3,470 / Creatinine 1.5 / BUN 36 / Hemoglobin 9.5 / Platelets 211
Today is another milestone for Bill's progress, the Foley catheter was removed. What a relief for Bill, not to mention the weight of the IV pole decreasing by about 8 lbs.

Due to the Kidney functions coming back to a near normal range, the leflunomide was stopped and Cidofovir was started. Cidofovir is used to treat viral infection of the eyes. It was difficult to find anything on Cidofovir and BK virus. The plan was to administer once a week for four to six weeks, via IV.

From Wikipedia - Cidofovir shows anti-BK virus activity in a subgroup of tranplant patients.

From PubMed - Administration of low-dose cidofovir was associated with clearance of BK virus DNA from blood and allograft, and stabilization of renal function in both patients, without significant toxicity.

Some pictures of Bill and his medical team: Bill with Dr. Mishra

Bill with Dr. Ochoa, Dr. Santiago and others on his team.

Day 18 - Saturday, November 27, 2010
WBC 4,860 / ANC 3,300 / Creatinine 1.4 / BUN 32 / Hemoglobin 8.1 / Platelets 191
Bill was very fatigued today. Our friend Mike Shaw came to visit and stayed until Monday. It was a nice change for me to have someone to help me. Mike helped with the preparation for the transition to the apartment. Mike did the inventory of items in the apartment and helped with shopping for supplies.

Day 19 - Sunday, November 28, 2010
WBC 3,500 / ANC 2,880 / Creatinine 1.4 / BUN 34 / Hemoglobin 8.3 / Platelets 198
For the first time in over a week, Bill walked in the hall with Mike Shaw and I. It was nice to see him get some of his energy back.

Day 20 - Monday, November 29, 2010
WBC 4,800 / Hemoglobin 8.9 / Platelets 237
Bill walked with Rehab, he is regaining his energy. Mike Shaw left to go home. One of the four pumps on the IV pole (Christmas tree) was removed. This is a sign that Bill is getting closer to being discharged.

Day 21 - Tuesday, November 30, 2010
WBC 3,450 / ANC 2,810 / Creatinine 1.2 / BUN 43 / Hemoglobin 8.2 / Platelets 210
The TPN (IV nutrition) was removed along with two other pumps. Only one pump remaining on the Christmas tree.
The transition nurse came to provide caregiver training one on one in Bill's room. The nutritionist came to provide training on proper food preparation and appropriate foods for immuno-compromised individuals. Both training session provided us with many hand-outs and notes to take with us.

Day 22 - Wednesday, December 1, 2010
WBC 3,500 / ANC 2,860 / Creatinine 1.5 / BUN 40 / Hemoglobin 7.5 / Platelets 199
Due to Bill's hemoglobin being below 8.0 he received two units of blood. A discharge date of Friday, December 3, 2010 was given as a target. Some of Bill's medications that were previously IV are being converted to pill form.

Day 23 - Thursday, December 2, 2010
WBC 6,590 / ANC 5,640 / Creatinine 1.6 / BUN 36 / Hemoglobin 10.8 / Platelets 210
Since the Creatinine was starting to climb again it was attributed to the Cidofovir. The Cidofovir was discontinued and Bill was put back on Leflunomide. The remainder of his meds were converted to pill form. The final pump was removed and the poll was removed. No more pushing and pulling the IV poll. No more lifting it over of the lip to the bathroom and no more hitting the extension cord with the wheels and the pole stopping dead. no more beeping every time an IV finish or there was an occlusion.

Day 24 - Friday, December 3, 2010 - discharge day!!!
WBC 6,510 / ANC 5,440 / Creatinine 1.6 / BUN 33 / Hemoglobin 10.7 / Platelets 190
The afternoon was dedicated to packing up all of our belongings and moving them to the apartment. I then went to Publix to stock the fridge and pantry. When I returned to the hospital I then had a visit with the outpatient pharmacy, where I purchased Bill's 18 prescriptions.
Here is a sample of the discharge instructions:
Home Care Diet - Immunosuppressed/Immunocompromised
Risk of Bleeding - use electric razor, use soft bristle toothbrush, avoid dental flossing, wear shoes
Risk of Infection - Avoid crowds and wear mask in public, avoid contact with the sick and children recently vaccinated, wash hands after using the bathroom and before meals, mouth care after every meal.
Instruction at Discharge - Call for uncontrollable pain, call for diarrhea, call for nausea/vomiting, call for any excessive bleeding, call for any questions regarding care.
Call for chills/Temperature greater than - 100.5
Notes - Avoid the sun, drink plenty of fluids, check skin daily for rashes.

We left the hospital around 7:30pm, Bill was so happy to be leaving the Bone Marrow Transplant Unit for the first time since November 3, 2010. A wheel chair was brought up and Bill walked behind it and pushed it all the way to the lobby. I got the car from the lot and we went home to the apartment. When we are ready to go to Titusville we will say we went home home.
Friday night was a rough night for us. Bill was still accustomed to the clinical staff waking him up at all hours of the night. He did not get much sleep and neither did I. Bill also seemed confused in the apartment.

Day 25 - Saturday, December 4, 2010
WBC 11.29 / ANC 9.59 / Creatinine 2.2 / BUN 47 / Hemoglobin 11.1 / Platelets 217
Bill had his first appointment in the BMT outpatient clinic at noon. Bill's orders at discharged included daily fluids since he was not eating and drinking enough. The confusion seemed to be getting worse. It took quite a long time for Bill to take his med's in the morning and at night. He was still having pain in is lower throat when he swallowed therefore he did not eat anything and had very little to drink. We did not get any sleep due to Bill's confusion.

Day 26 - Sunday, December 5, 2010
WBC 7.73 / ANC >1,500 / Creatinine 1.9 / BUN 43 / Hemoglobin 10.4 / Platelets 200
Bill's appointment in the BMT outpatient clinic was at 7:30am. Bill received his daily intake of IV fluids. After a second night of no sleep I expressed my concern that something was not right when I saw the PA. The confusion was getting worse and I was having difficultly taking care of Bill on my own. I called Margy to come and provide me some relief since I was exhausted. Margy and Gary came to visit, brought bagels from Bagel King in Deltona and brought pizza for dinner. Gary assisted me with the shopping while Margy stayed with Bill. They also noticed the extreme confusion that I was seeing. Bill had a few spoon fulls of food, otherwise he did not eat. For a third night we did not get much sleep.

Day 27 - Monday, December 6, 2010
WBC 7,320 / ANC 6,210 / Creatinine 2.2 / BUN 50 / Hemoglobin 10.1 / Platelets 165
Bill's appointment in the BMT outpatient clinic was at 7:30am again, He received his IV fluids. Again I expressed my concern to the staff. His Creatinine was climbing again due to lack of drinking. The nurse discussed Bill's condition with the doctor after her assessment and the Dr. admitted him due to delirium. They suspected that the Med's may have caused it or Bill might have an infection so all the blood cultures were done. Bill was started on Anti Viral, Bacterial and fugal meds. Since we moved into the apartment, I returned there to sleep.

Day 28 - Tuesday, December 7, 2010
WBC 4.22 / ANC 3.37 / Creatinine 1.9 / BUN 43 / Hemoglobin 8.8 / Plateletes 127
Bill's confusion was getting worse so they performed an MRI of the brain to rule of a viral infection. Since Bill was not able to take his pills the christmas tree was added and all his med's were converted to IV.

Day 29 - Wednesday, December 8, 2010
WBC 4,450 / ANC 3,540 / Creatinine 1.9 / BUN 34 / Hemoglobin 8.5 / Platelets 121
A lumbar puncture was performed and an ultra sound of the kidneys. Bill was fatigued and sleeping all the time, therefore they had to re-insert a foley catheter. The MRI came back negative. Some of the blood cultures also came back negative. Bill Developed Diarrhea which is a sign of GVHD, so he was prescribed two medications. I will update the information on the medications in a future posting. The Diarrhea was controlled after today.

Day 30 - Thursday, December 9, 2010
WBC 5,680 / ANC (--) / Creatinine 1.2 / BUN 20 / Hemoglobin 9.3 / Platelets 124
The rest of the blood cultures came back negative, the lumbar puncture came back negative, the kidney ultra sound was unremarkable. Bill's Kidney functions were coming back to normal now that his was on the IV again. Since Bill had not eaten he was started on TPN again.

Day 31 - Friday, December 10, 2010
WBC 4,640 / ANC 4,170 / Creatinine 1.0 / BUN 21 / Hemoglobin 8.5 / Platelets 110
Today was the first day that Bill tried to eat food. He was able to eat a few bites and he drank the required two liters.

Day 32 - Saturday, December 11, 2010
WBC 4,090 / ANC 3,630 / Creatinine 0.9 / BUN 24 / Hemoglobin 7.7 / Platelets 105
Bill received two units of red blood cells. His delirium had improved to the point that the foley was able to be removed. Bill continues to try and eat at each meal. He is drinking as much as he can tolerate. Bill started to bring attention to pain in his hands which turned into a rash. Another sign of GVHD. It is a good thing to get mild GVHD, that means the immune system is working.