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, 2010WBC 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.
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