A Breakthrough Is Coming - Day +28 & +29

…But When?

Friday, June 3

The last couple days have been rough. John is a month post-transplant in the hospital (32 days on this current admission) and on a downward spiral both physically and emotionally. It has been so sad watching his discouragement build and his weakness consume him. They have continued to bring more brainpower and run more tests. The tone of the team has gotten more serious again.

He had made so much progress the week after getting out of ICU and through the move weekend.

At 5:00 p.m. Friday, the door to John’s room flew open and excited practitioners from Hemotology and Infectious Disease flooded the room. They had answers and huge smiles. John had tested positive for West Nile Virus and Cytomegalovirus (CMV). How could this be? But it explained the weakness, the fevers, confusion, nausea, horrible diarrhea, fatigue, floating rash, bloating and abdominal pain. They had seen inflammation in his colon on a C/T Scan the Thusday that hadn’t been there several days before and it was explained by the CMV test. They had answers and a treatment plan. This isn’t going to be a quick fix, but at least they are telling us there is a fix. Some of the other possibilities that they had been testing for would not have been so easy to treat.

You may ask, how did he get these side infections while in a pressure-positive, sterile environment for 30 days. The I.D. doc said that CMV is something that most adults have been exposed during youth and to a healthy individual it resides dormant without concern. A transplant patient or someone with a highly-compromised immune system and on steroid therapy can activate it and have an extremely serious condition.

The West Nile Virus was another shock. When John’s white cells got to a level that he normally might have gone home, we requested “patio privileges” to get him some fresh air, sunshine and a change of scenery from the 4 walls of his special room. We all agreed that this would help boost his morale. We stayed within the beautiful rose garden or the cactus park outside the front entrance and we stayed masked and distanced from any other strollers. I would push him around these areas, we would pull his wheelchair next to a fountain or park bench and just relax, talk or enjoy the warmth from his highly chilled room. Apparently there are mosquitos that neither of us had noticed on our walks. They said it was a real problem in Arizona last year and it had started showing up early this year.

The IV therapies for both of these conditions began as quickly as they could get them to his room. We ended the day feeling hopeful.

Saturday, June 4

I made my usual 5:30 a.m. call to his nurse and heard nothing too concerning. Low grade fevers which had become normal each night, but he was doing well and needing blood products. I spoke with him around 8:00 to see if he was good with me staying home to unpack and do a little housework. He sounded stronger than he had in a week. He said he felt pretty good and would see me at noon and he thought the idea of playing a game might be interesting.

When I walked in at noon, it was deja vu. There were several care team members scurrying around the bed, a cloth on his forehead, oxygen cannula in his nose and badges that said Rapid Response. This is where we were a few weeks ago when the fevers were climbing, the shaking, confusion and ICU started.

He had already had 2 units of platelets this morning, was getting a unit of blood (BTW, Thank you to the Goulds for donating blood yesterday!), was on a chilling mat and the mood was serious. They said he was going to get an extra dialysis run today and they are giving him IV nutrition again while they give his digestive system a rest.

He seemed to settle down as his fever fell toward normal before dialysis, but this wasn’t the way I expected this new “plan” to start.

Let’s pray the new treatments take hold soon. He needs a break!


Julia