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