They told us the day the Mr. had his surgery that his donor had a virus called CMV. Cytamegalovirus. We had never heard of it. Nothing serious for the general population (forty percent of people have it and don't even know it) and probably nothing to worry about for him because he most likely wouldn't get it. They gave him antiviral medication as part of his daily routine and we thought nothing more about it.
Time went on. He was doing well. Getting stronger every day and even able to take walks with Alyssa and with his physical therapist. He was able to drive himself to the Kwik Check and to the store if he needed something. I quit worrying about him so much. Six months went by. I noted with relief at the end of May that the antiviral medicine was coming to an end. One less medicine to deal with. The liver team had told us that eventually he would be down to just one pill a day. Six months to the day from the surgery, I threw the antiviral pill bottle in the trash with satisfaction. Things were moving in the right direction. A day or so later the liver team called with a new anti rejection med to the pill mix. I gave him the prescribed dose. The next morning I was alarmed when he woke up not feeling well. His basic vitals were good, he just felt tired. And weak. And he had a headache.
Over the course of the week he continued to deteriorate. It was Memorial day weekend. We were supposed to be in Houston on that Tues for liver clinic. I tried calling all the numbers they had given us but could not get through to a liver nurse. We stumbled through til Tues morning. I was so relieved to hear Nurse Jones voice on the phone at 8 oh One A:M in the morning. She wasn't too pleased with me, however, seeming skeptical that I had called as I said I had. She made me cry, y'all. I just wanted help and I felt kind of flayed after talking to her. I told her that the new meds were wreaking havoc and that he was having splitting headaches and unable to sleep and muscle weakness and aches. She conceded that perhaps it could be the new meds and took him off. And apologized for "fussing at me" as she called it. I was still a little hurt, but very relieved that immediately after ceasing the new med he began to revive. We made our trip to Houston to see the liver doctors. He was feeling much better but the nurses were puzzled by his lab numbers. His liver enzymes were much higher than they had been since surgery and his kidney function was falling. And no one knew why. We thought maybe it was he wasn't drinking enough water? Maybe the meds weren't working the way they were supposed to because he was dehydrated?
We went back home, a little disturbed about it all. He was feeling ok and then was invited to a comic convention with Matthew. They spent the day together having the time of their lives. He came home a truly happy man, full of joy over finally moving on with his life and getting back to normal.
The next day he was in bed. His muscles ached. He could barely move. He put it down to too much activity the day before. It was a lot of walking. More than he had done in two years.
And he never really improved. Day after day he complained of his muscles aching and an overwhelming fatigue.
A couple of weeks went by. The liver nurse called. His liver enzymes are way too high. Go down and get your blood drawn again right now. I will call you again shortly. This was on a Thursday. We went right down to the lab, which is five blocks away. She called back. I am considering admitting you to the hospital. I am just not sure yet, we will have to have a pow wow about whether we want to treat you as an inpatient or out patient. You have tested positive for the CMV virus. Oh. MY.
As I said before, it's not dangerous for the general population but for transplant patients it is very dangerous. The funny thing was that his vitals had continued to be normal. Great even. Other than one day that he had a 99 temp, he had had no fevers. His BP had been normal. Blood sugars hadn't deviated. He didn't feel good but his baseline was fine. Except it wasn't. The real baseline was measured in his blood and he was going downhill fast.
The doctor said she would call back if they were going to admit him, but she never did. We got a call from the pharmacist telling us that they were overnighting the antiviral medicine. The same one I had thrown away a month ago with such glee. Sigh. At least treatment would be almost immediate. No inpatient treatment. I couldn't imagine they were going to put him in the hospital. As I said, he didn't really appear too sick.
We waited for the all important med to arrive the next morning. It didn't arrive. Nor did it arrive the next. Now it was 4th of July weekend. No meds. He was feeling pretty bad. I looked through all the meds to see if maybe I had missed throwing some away. I looked and looked again. There was nothing. It was all gone. I debated calling the liver nurses. The Mr. didn't want me to call. His vitals were still good and I didn't want to do it. It was a holiday weekend. I didn't want to interrupt their 4th of July. When Tues rolled around and I finally did made the call I got another earful. This time I took it without any tears. And then things became serious. Go to the nearest ER. Go NOW.
We were a little scared by now. We got to the ER and told them he would be an admitted patient per the VA. They took him in the back and assessed him. Took some blood. We waited. We didn't say much. The doctor came back. I got the liver coordinator in Dallas on the line to talk to him, and she in turn called the hepatology doctor in Houston on a three way call. The ER doctor read out some of the Mr.'s numbers to her. She exclaimed out loud Those numbers are MUCH higher than they were on Thursday. And then she said it. She threw out the "R" word. Rejection. We cannot rule out rejection. He must go to the Dallas VA. Or Southwestern. Or he must go to Houston. NOW. The ER doctor agreed. We don't have a liver transplant team here. You must go elsewhere for treatment. Only there are no beds anywhere. Every hospital in the area is full.
We dithered. If he went by ambulance they would turn him away. People who just show up in the ER by car have preference. The liver coordinator told us to just drive to the Dallas VA and there would be a bed.
So we left one hospital and headed for the second one. We didn't pass go or collect our two hundred dollars, we just went. No suitcase, no clothes, no toiletries, no food, no nothing.
We were frightened. Was he rejecting? Would he have to go back on the list? What were the odds of being able to get another liver? In the back of our minds, and I know I heard him mutter under his breath Am I going to die?
Tears were shed.
We got to Dallas and he was whisked into an ER bed right away. Doctors came and went. Nurses came and checked his vitals every so often. We sat and waited. All the while the "R" word was dancing around in the back of our minds.
Finally he was admitted. I went to my Dad's house to sleep. And pray. And cry.
The next day I was there bright and early eagerly awaiting answers. The first thing we found out was that they didn't know what was wrong. But they were working on trying to find out. I was racking my brain, trying to remember if I had done anything wrong. Had I caused this? Was it because I forgot to heat the deli meat on his Reuben last week? Was it those hotdogs we had on the Fourth of July? Was it that comic convention he went to with Matthew? Did he catch something there? All the time the CMV was floating around as an answer, but the doctors seemed to think it was possibly something else. They asked lots of strange questions. Do you have cows? Goats? A farm? Do you have any animals? Do you have grandchildren? How often do you see them? Do you eat unpasteurized cheeses? Do you have a garden? They left after all the disturbing and kind of creepy questions and we still had no answers. But they did answer one very big question for us. If it really was that his new liver was Rejecting, is there a treatment for it? And much to our relief the answer was yes. And if it's the CMV, there is a treatment for that, too. I pretty much quit worrying after that. I was so, SO relieved that he wasn't going to lose his new liver or worse.
They kept him for a full week. And by the end of it we were just so over it and ready to go home. The last day he was there they kept him on a technicality. The lab had taken his blood but had not measured his anti rejection med levels, which is critical when it comes to liver enzyme numbers. And he has to have the blood measured before he takes his meds. Otherwise the number is not an accurate reflection. He had already had his morning meds, so...another day.
We came home yesterday. Finally rolled into the driveway. So good to be home. Even if it is hot as Hades in Texas in July.
I fell into routine right away. Cleaned out the fridge. Threw away everything. That deli meat. Those hotdogs. The goat cheese. Watered the garden, which looked like a desert wasteland after a week of this heat. Did some laundry. Went to bed exhausted. But so happy to be home.
Today the Mr. had a doctor's appointment. Nothing to do with liver. We got in the hot, hot, HOT car. I turned on the air. The Mr. was in a good mood. I got out my phone and google maps. Put in the address. Looked behind me and then put it in reverse. And then I hit something. Big. In my driveway. What.the.heck? I looked in the rearview and all I saw was Amazon. I had hit an Amazon truck! He was parked across the bottom of the driveway in my blind spot. I immediately jumped out. He pulled his truck forward. I looked at his bumper. No damage. I looked at my bumper. Big dent. Oh man. The Mr. got out and started talking to the guy, exchanging information. I got on the phone with USAA...only as soon as the guy got our info... he left! Here's your package, and Amazon doesn't give us that kind of information to share with you. And he was gone! I couldn't believe it! We didn't even get his name. I was already on the phone with USAA and I was MAD. I pulled the car out and followed him to his next stop and got his license number. And then I found out that this accident was going to be pinned on me. Even though HE was parked illegally. I was the one who hit him.
That didn't go over well with me. How come people are allowed to get away with stuff like that? He left the scene of an accident. Just took off! I mean, he had deliveries to make, after all!
I was mad about it all afternoon. I sulked. But the Mr. was a trooper. He had a good attitude about it.
I came in from watering the garden this evening and had a scowl on my face. He was smiling. I stood there with his meds and he looked at me and started making up a nonsensical whimsical song. He was so cute. And the song was so funny. All about how much he loved his darling wife. I gave it up, y'all. Who could be in a bad mood while being serenaded with a silly nonsensical song and a smile? It put things in perspective.
As I looked into his happy eyes, something I had heard from Corrie ten Boom crossed my mind. Child, you have to learn to see things in the right proportions. Learn to see great things small and small things great. And in the great scheme of things this car accident is small. As the Mr. put it. I am just happy to be alive. I almost died. The car thing is nothing.
He was right.
As time goes on I love this man more and more.
What a blessing he is.
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