Post #46 First roller coaster ride post transplant......

Today is day 13, however I must go back to day 6 to bring everyone up to speed.

Day 6 - Monday November 15th, 2010
The day started out the same as the first 5 days did. Some time during the day we noticed Bill's urine was getting darker due to blood. Even though his platelets were 33 the doctor ordered 4 units of platelets due to the bleeding as their protocol becomes 50. (the normal protocol is 4 units of platelets when the patient is below 30). Vital signs are taken just prior to the transfusion then again 15 minutes in. Hives and fever are common side effects from receiving platelets. Bill did not get a fever but he did get a few hives. One was on his hand and the other was on his back. The hive on his back looked like a mega sized mosquito bite. Within 30 minutes the hives were gone. If the hives were severe Bill would have been premedicated with Benedryl before future transfusions. Blood work is taken after the transfusion to confirm levels, Bill's level only went up to 38 therefore he received another 4 units of platelets. This time he had no reaction and his platelets came up to 52.

Day 7 - Tuesday November 16th, 2010
Bill's sutures from the implanted triple lumen catheter were removed and the tegaderm dressing was changed. Tegaderm is not just a dressing; it is a multi-functional, sterile, waterproof yet breathable barrier that prevents germs and bacteria from getting to the site and helps in the healing process.

Shortly after a bowel movement Bill started to experience severe pain in his lower back. Even with increased pain medicine the pain would not subside. An x-ray of the abdomen, a blood test, urine test, bladder scan and ultra sound were performed and all came back negative. Bill's urine was getting darker and darker, he was starting to get bladder spasms and his appetite diminished. Very little sleep was achieved.

Day 8 - Wednesday, November 17th, 2010
Bill started to experience some confusion, the abdominal pain continued. Platelets and Hemoglobin levels were low so Bill received 8 units of Platelets and 2 units of blood. Late morning Bill started to pass clots in his urine. By late afternoon he was not able to pass urine and required a catheter to irrigate the bladder. A CT with contrast of the kidneys was performed. Prior to the CT, Bill was given a large amount of fluids to hydrate for processing the contrast through his kidneys. Just prior to the CT Bill began to labor when breathing and had a gurgle.

Practically no sleep was achieved this night.

Day 9 - Thursday, November 18th, 2010

At 5:00am Bill spiked a fever of 101.3 so the staff initiated fever protocol. Blood is taken for many different types of cultures and Maxipime (cefepime) 2,000mg - antibiotic - was started. Due to two sleepless nights I asked Margy to come to Tampa to help out so I could get some rest. Bill's blood counts were low again so he received 2 units of blood and 2 units of platelets. Blood and clots continued to drain through the catheter so the doctors started CBI - continuous bladder irrigation. We had a consult with a urologist and nephrologist. The CT shows inflammation in the tubes between the kidneys and the bladder. Bill's breathing was weak, his O2 saturation was as low as 71 so Bill was put on oxygen. The doctor informed us that Bill tested positive for the BK virus and had an infection in his bladder.
From Wikipedia - The BK virus rarely causes disease since many people who are infected with this virus are asymptomatic. If symptoms do appear, they tend to be mild: respiratory infection or fever. These are known as primary BK infections.
The virus then disseminates to the kidneys and urinary tract where it persists for the life of the individual. It is thought that up to 80% of the population contains a latent form of this virus, which remains latent until the body undergoes some form of immunosuppression.
Presentation in these immunocompromized individuals is much more severe. Clinical manifestations include renal dysfunction (seen by a progressive rise in serum creatinine), and an abnormal urinalysis revealing renal tubular cells and inflammatory cells.
In bone marrow transplant recipients it is notable as a cause for hemorrhagic cystitis.

Due to all the sudden developments, The staff moved Bill from the 4th floor to the 3rd floor where they had more staffing and resources to handle higher acuity patients. The 4th floor has a patient to nurse ratio of 3 to 1. On the 3rd floor they have the ability to provide a ratio of 2 to 1. I was so happy to have Margy here to help. Margy stayed the night to help out so I could sleep.

Day 10 - Friday, November 19th, 2010

Normally I don't have anything to report prior to 5:00am, however this day started shortly after midnight. Bill had become very agitated and delirious, his breathing was maintaining with the use of oxygen from two different sources. A nasal cannula and a face mask. From midnight to 2:15am I sat by the bedside holding Bill's hand and watching him. Margy tried to get some rest during this time. I went to bed around 2:30am and was awoken to help Margy at 3:15am. Bill had gotten up and needed to get to the bathroom but was tangled with his various lines and equipment. As I tried to untangle him, he became combative, harmful and delirious. Between the medicine and the kidney function not working properly he was not himself. We did not get any sleep for the rest of the evening. The doctors could not sedate Bill due to the kidney function getting worse. During the morning rounds Dr. Mishra informed us that Bill's condition was not good and that he had acute kidney insufficiency. Normal creatinine level is 1.0 for someone Bill's size, he was up to 3.7.

From Wikipedia - Creatinine is filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise.

His BUN level was 54, normal is between 7 and 20.

From Wikipedia - The BUN ( Blood Urea Nitrogen) test is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a substance secreted by the live, and removed from the blood by the kidneys.

Basically he was starting renal failure. Bill was running a fever, had fluid overload on the lungs, X ray showed opacity which could indicate an infection or Pneumonia, mental status changes and the BK virus earlier than they would expect which could indicate that other virus' may present. If his breathing worsened we might have some decisions to make regarding intubation. Most of his medications were changed to reduce the fluid intake to allow his lungs to remove the fluid. Some of the changes were made to reduce the impact on the kidneys. The doctor suggested we get some family members to come and be around Bill to help him over this speed bump. We made some calls and his family was here by 8:00pm the same Day.

His father (Sam), brother (Ed), Sisters (Lue, Marietta), Daughter (Marie) came in from New York/New Jersey. Margy was already here, his son Billy who lives in Deltona, Florida was here by 1:00pm. The following day his niece (Mollie) and daughter-in-law (Johanna) also came. Bill was in and out and did not really know they were there.

Day 11 - Saturday, November 20th, 2010 - (Happy Birthday to Mike's sister Barbara and niece Sarah)

Saturday for Bill and I started around 2:00am. It was a great beginning!!! He got up and went to the bathroom and when he came out he was back to himself. The delirium had passed, he was still dealing with the other problems from the day before. We did get a few hours sleep before his family returned to be with him. He did not really remember seeing them the day before, but he was very happy to see them, especially his father who does not like to fly. We had a really nice day with his family.

The creatinine level came down to 1.9 and the BUN came down to 41. Both indicating that the kidney is starting to work again and do its job.

Bill with his dad

Bill with his son Billy and his daughter Marie

Day 12 - Sunday, November 21, 2010

The family were on their way back to their respective homes by 8:00am with the exception of Marie who was staying until Monday. The creatinine and BUN levels were maintaining. The BK virus causes bleeding in the bladder and spasms, so the continuous bladder irrigation has not been stopped as the doctors want to prevent clots. Due to the kidney problems they were not able to start treating the BK virus.

Bill started with really bad mucocitis. He is not able to swallow liquids or solids without pain. I have never seen anything like this in someone mouth. sores and cuts everywhere. Bill's tongue is swollen and he is having difficulty speaking.

From Wikipedia -Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.
Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation. As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.

Day 13 - Monday, November 22, 2010

WBC - 1,870 / Neutrophil count 440

Today is the first day that the blood work is showing signs that the stem cells are grafting!! Successful grafting is when the neutrophil count is greater than 1,000 for two consecutive days.

The mucositis is at its worst. Bill has not eaten any food for almost 5 days, this started with the kidney failure. The doctors have decided to start Bill on TPN to get him some nutrition.

From Wikipedia - Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas that contain nutrients such as salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition (TPN) when no food is given by other routes.

Bill is still having trouble from the BK virus. He is still on the CBI, blood in the urine and pain from the bladder. Every morning Bill runs a fever around 101. So far, other than the BK virus and the bladder infection, Bill has not tested positive in any of the many cultures that have been performed.

the next post will cover day 14 through 16.