To the Hospital Again!

Being at home the past two days has been wonderful! Mark felt better than he had in months! He was still weak, but he worked on his computer: going through emails, making reservations for our Europe trip in June, and catching up on other projects. Last night, as I was preparing dinner, Mark came into the kitchen, cut up a pineapple, and sliced cheese for sandwiches. He hadn’t been able to do anything like that for a long time. It felt almost normal. He couldn’t stay up for long, but it was progression.

Around 9 pm, he hit the wall, so I got him into bed and then chills started. Four or five fuzzy blankets, hot from the dryer did little to help. Around 1:30 am, he seemed confused and was moaning. When I took his temperature, it registered 103. I didn’t know if that was correct, but had been told that it didn’t matter what it was; if he was running a fever, I needed to bring him in.

I put the foam pad in the back of the car, but when he complained that he couldn’t breathe, I called 911. When they arrived, they knew he needed to go, but Providence Portland was “red” so they couldn’t take him there. They were getting ready to help him to the car, when Mark managed to mumble that he wanted them to take him, so off to St. Vincent they went.  I was relieved, even though it was not our first hospital preference. 

Again, I knew he would be admitted, so I packed and napped, and came in this morning.

At the hospital, his fever initially registered 103, as well. When I arrived a hot air blanket covered him, which eventually helped stop the shaking chills. In all the times he had been sick, I’d never seen him quite so miserable. His vitals were not normal, but neither were they at dangerous levels. 

CT Scans and X-ray didn’t show any pneumonia. His bilirubin was fairly low, not normal, but not high. Labs showed some stress to his kidneys and liver enzymes were higher, but not alarming.  He got some oxygen and had Tylenol for fever and Fentanyl for pain and to help him sleep. He finally calmed down and slept in short intervals. 

Dr. Taylor called and was happy we brought him here. There were absolutely no beds at Providence Main. There evidently aren’t many here either, as we’re still in the ED. (Around 4 pm he was taken to a room.)

It’s hard to get hopes up and have them dashed, nevertheless, we believe he will pull through again. Your support means so very much to us! Our hearts go out to those going through tough trials, and some we know who have recently lost loved ones!

CT Scan Results

Mark is still in the hospital, but we are grateful. If we had gone home yesterday with the planned dose of hydrocortisone, it would not have been good! The emergency dosage was 150 mg of IV steroids which was reduced to a daily dose of 100 mg. Yesterday (instead of Sunday), Mark was taken off  IV and given hydrocortisone in pill form with the intention of moving to 50 mg a day. However, after 40 mg, he was nauseous and fatigued, so 30 mg more was given. Coming down too fast from the high-dose cortisol doesn’t work for him, so now they will taper more gradually. (Evidently, many patients handle the reduction without a problem.) The plan is for a discharge later today with a higher dose that will be decreased over time. 

Now, for the CT Scan results!! It was done last Friday, the day Mark went to the Emergency Department. Dr. Taylor had not seen the results when he came in to visit at the end of the workday, but he was pretty discouraged. With the infection and increase in bilirubin, he was convinced that neither the targeted nor the T-cell therapies were working. If neither of them was shrinking tumors and a blockage in the liver causing inflammation, the situation was grim. There are simply no other treatment options. Dr. Taylor didn't specifically say that Mark was terminal, but that was the implication! We hung onto the hope that maybe he was wrong!

When the CT report showed up on MyChart Friday night, it didn't seem nearly so bleak, but it's not easy to decipher. We didn't see Dr. Taylor over the weekend, but Monday morning, he was delighted that the report was SO much better than he anticipated! A tumor in the lungs has resolved, the largest tumor in the liver has shrunk, and others have not changed in size. That is fantastic news!! Something is definitely working, and we are hopeful it is the T-cell therapy, as the other can shrink tumors but doesn't eradicate cancer. Unfortunately, we won't know which it is for some time. 

The internists are pretty sure that Mark was suffering from the effects of adrenal insufficiency along with an infection brewing in the lungs. There was no indication of blockage in the liver, although the reason for the bilirubin increase is unclear. It has continued its downward trend. 

We are looking forward to getting the meds right and to going home!!! 

* Yep, we’re going home today!

A Mystery

Tests have not revealed the culprit, but antibiotics and high-dose hydrocortisone have made an enormous difference. Mark is feeling SO much better. His body is still immune-compromised, so infections can start quickly from any bacteria in his body. The doctor who came in this morning thinks the infection could be from pneumonia, but that is not conclusive. Fortunately, his bilirubin count is making its way back down. He is going on a pill form of antibiotic before he goes home to ensure it is enough. Also, a more gradual decrease in hydrocortisone is planned, which will also be started in pill form. If his body handles it well, Mark will likely be discharged tomorrow. 🤞

The CT scan results are in, but we won't have a chance to discuss them with Dr. Taylor until tomorrow, so we will defer commenting on them until we understand more. 

This recovery has been quick, but the source is still a mystery. That's okay, as long as it doesn't come back, and Mark is on the road to recovery. Much appreciation for your love and support! 

Another Infection

Mark’s first day home was the best, although he was weak. Wednesday and Thursday, he struggled to eat anything because of almost constant nausea. He slept most of the time, but his vitals continued to be good. 

This morning, he was moaning, and his temperature registered 103 on our home thermometer. Immediately, I contacted Dr. Taylor, who advised me to bring him to the Emergency Department ASAP or call 911. Unfortunately, he was too weak to get out of bed, so I opted for help. The medics registered a 101 temp, but they could tell he was not in good shape, so they were happy to transport him. It gave me time to get ready and pack, as I knew he would be admitted. 

Currently, he is in the Emergency Department at Providence Portland Medical Center on Glisan. Tests are being done to determine where the infection is. Nothing is conclusive at this point, but he will definitely be admitted. The hospital is full, so he could be in the ED for the night. **We just learned that he has been assigned a room on the 7th floor (YEA!). He was moved up around 10 pm.

As usual, a Covid test was required, but the doctor requested one that takes hours to get results. No visitors are allowed until the results are in, so I had to wait in the lobby for several hours. Finally, around 5:30 pm, I got to be with him. He’s still sleeping a lot, but he is mentally clear, and his fever is under control with antibiotics. 

 We continue to see for heavenly help, so we appreciate your prayers and positive energy on his behalf!!!