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.