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.