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.

Post #55 - So what happened during the doctor visit on Wednesday?

We made the two hour trip to Moffitt and went to the BMT clinic for blood work. Shortly after we met with the PA and the physician. We discussed all the issues that Bill has been dealing with and got many answers.

A culture of the sores in his mouth were done to determine if the Herpes (HSV) was back. We should have those results in a few days. A culture was also done of his tongue too, it looks like Bill may have a fungal infection there. The doctor was absolutely positive that the fevers that Bill has been having is a direct result of the sores in his mouth. Know that was a big relief, as I was concerned something more serious could have been brewing. Bill has not eaten anything since last Saturday, other than the feeding through the ng tube. On Wednesday his weight was 129, which is great and shows that he is maintaining and not losing.

The Dr. took one look at the ng tube that Bill had in from last Wednesday and said it was the wrong tube and need to be change. The nurse that does the procedure came to the clinic and put in a new ng tube, the original one he had.

The last issue to deal with was the swelling in his legs and feet. The blood work showed that Bills creatinine was 2.0, which is double what Bills base line is and should be. That is the reason for his swelling, his kidneys are not functioning properly. This is the biggest issue that needs to be dealt with. An ultra sound of the kidneys was done and a plan of action will be created from the results. Urine was also obtained. The Dr. thinks the issue may be the same one that we have been watching, which means the solution would be to have a stent put in the tube between his kidney and bladder. We will know early next week.

The visit on Wednesday lasted seven hours in all between tests and appointments, a long day and then a two hour ride back home to Titusville.

Now that we have answers we are both feeling a lot better. Alright, I am feeling a lot better. Being a caregiver and making sure the patient has everything they need to get better puts your guard up. When something changes or matches the symptoms that they tell you to watch for, the tendency is to worry. I did a lot of worrying. I feel much better and can now put my energy to working on what I can which is to help Bill get better.

Due to the issues that have popped up (another bump in the road as the Dr. puts it) we are back on weekly visits to Moffit BMT clinic, so our next appointment is on Wednesday.

Post #54 - Day 97 - 119 Home Sweet Home

The first week of being home went well for us. Bill continued to get the ng feeding each night. On Wednesday February 16 (Day 99) we made our first weekly visit to Moffitt. We have decided not to spend the night, therefore we drive two hours each way on the days we have the appointment. Since Bill was not having any relief from the Bladder issue, the doctor order Cidofovir IV to treat the virus. The treatment requires 1/2 a liter of saline pre treatment, Cidofovir, and 1/2 a liter of saline post treatment. The pre and post treatment is done due to the effect the drug has on the kidneys. Similar to the process we did at home for the Foscarnet. The treatment is done once a week for about four weeks. Bill's blood was taken and the pre treatment saline was started. About a half an hour into the pre treatment, the nurse came in and informed us that Bill's Creatinine was to high and administering the treatment could do more harm than good. The pre treatment was finished and we waited for the doctors visit. The bone marrow biopsy results were not available at this appointment. The Chimersim study did come back and it showed that Bill had 77% donor cells. The doctor indicated that he expected the results to be over 90% at this point in the process, but due to the various set backs Bill has had with the virus' he was not concerned.

Week two at home went well for us. Bill had his weekly appointment with the doctor at Moffitt on Wednesday February 23. Prior to the appointment, Bill was scheduled for a simulated driving test which is performed on a computer. The purpose of the test is to measure response/reaction time to tasks. Bill achieved a marginal fail on the test (just missed passing), which means he has not been released to drive a car. It is important that Bill not drive until he gets released by the doctor as he would not be covered by insurance if something were to happen. From the test we went up to the clinic for the weekly blood test. Once again, since Bill is still suffering with the bladder, an attempt was made to give him Cidofovir. His creatinine level was to high to administer the cidofovir so it was not given. The doctor prescribed a drug called Leflunomide 20mg tablet taken once a day to treat the BK virus. It took a week to get the prescription approved so Bill did not start on it until March 2. The visit with the doctor went well. He decided that since everything else was going well, our visits would be changed to every other week and the ng tube feeding would continue until the next appointment. At that time, March 9, he would assess the need to continue.

Thursday February 24 Bill and I watched the final launch of Space shuttle Discovery. Bill watched on TV, 10 seconds before lift off, I went outside and watched it from our front yard. We can never get tired of watching the beauty of a launch. Titusville was a zoo for several hours after the launch due to the increased number of people that came to catch one of the three final launches. Two more to go before the shuttle program is retired.

The third week home did not go as well as the first two. On Tuesday, March 1, we discovered that the ng tube was clogged and nothing we did opened the tube. We tried everything we could think of, including coke. We gave up at 2:00am in the morning and agreed that we would need to go to the emergency room the next morning. On Wednesday, March 2 we visited Parrish Medical Center, our local hospital (where I work) and they tried everything they could to clear the tube. The doctor said "the tube must come out and be replaced". Bill was not happy, I was not happy either, but we didn't want to lose the momentum Bill achieved with his weight so the tube was replaced.

Friday March 4, Bill noticed that his feet were swollen and he was getting a new sore in his mouth. Since it was new and small we decided to monitor the sore. On Saturday it grew a little more and the feet were still swollen. On Sunday around 11:00am, Bill developed a fever of 100.6 (the magic number for an emergency room visit is 100.5). Since his temperature had been great up until now, he wanted to wait a few hours to see if it would come down. Around 2:00pm he was down to 100.4 and just before bed time he was down to 99.7. Although we did not go to the emergency room I did call the BMT clinic to let them know what was going on to get their advice. They said if the fever continues, which it didn't, Bill would need to get to an emergency room for evaluation.

Monday, March 7, the sore in Bill's mouth grew to the size of a quarter and was causing to much pain for him to eat anything. At around 1:30 in the afternoon, the tape let go on the ng tube and it worked its way about half the length out of his nose. The trouper that Bill is, he pushed the tube back down and re taped it it to his face. When I found out, I once again called the BMT clinic and let them know what was going on to make sure there was nothing that we needed to do. Due to the inability to eat, Bill has started taking the food via the ng tube during the day time as well as the treatment he was getting at night. The swelling in his feet have come down a little.

Tuesday, today March 8, Bill is feeling fatigued, the sore is very painful and his lip is now swollen. We are both happy that the Moffitt appointment is tomorrow so we can see the doctor and figure out what is going on with his condition. As soon as we know anything I will post an updated.