NO TRUST

 I have trust issues. I admit it. Some of them go way back before I was sick. But throughout this journey, I have only been trusting very few people.  

FIRST

As you know, I had my transplant on January 24, 2019. Remember the three TIP’s  procedures I had? I told you how the first one the doctor did I was screaming throughout the whole thing. Low and behold when they went to take out my liver, they found in my lower portal vein, a deep vein thrombosis.  Yup a nice ole BLOOD CLOT.  Looking back on it I think, wow, what if that sucker would have broken off.  Would it have gone to my brain, caused a stroke or worse yet, death? TRUST?

SECOND

What caused my seizure?  I developed PRES (a brain disorder).  In my case, it was caused by an electrical malfunction, as a result of my transplant.  It was caused by certain powerful drugs. The offending medication?  Tacrolimus, aka Prograf, the number one anti-rejection drug given to transplant patients. I was given way too high of doses involving four different drugs after transplant. Therefore seizure.  I can no longer take that medication. We did get the doctor to admit he gave me too much later at one of my many doctor appointments. TRUST?

THIRD

Above photo my right hip with lidocaine patch for pain. 

2.5.19

They would no longer allow me to have a catheter. They wanted me to get up and wobble to the bathroom. That’s how I walked, wobbly.  I was still unsteady on my feet from my seizure. Brent talked to my nurse Ross that evening. He promised Brent that when I called for help to get to the bathroom, he would make sure there would be two aides. Of course, when you call for help it could be 15 minutes before someone arrives. I already had issues with holding my water. Finally ONE very small aide came in to help me. I told her two people were supposed to help me. She said to just hold on tight to my walker. We started towards the bathroom when suddenly I felt myself slipping. Before I knew it I was headed towards the door jamb.  I started yelling. I hit my right hip that had been replaced a year earlier, but never healed all the way because of going right into end stage liver disease. Oh....My....Gosh. The pain. She finally got Ross in there. He sat me down on the toilet and I thought I was going to go through the roof from the pain. I don’t even think he gave me a pain pill. Needless to say, the next morning when Brent got there, he was pissed!!!  When the surgeons came around for their walkabout, he let them have it. According to the report they wrote, “Husband furious with all caregivers about post operative course.  Risk management called”.  They freaking deserved his anger. Two days later on another walkabout report Dr. GagMe (the actual surgeon that did my transplant, not his real name but close) said I was having panic attacks when standing. You think GagMe?  After that horrendous night, Brent slept at the hospital every night with me. TRUST?

The lovely feeding tube. I look like hell by the way. 

Fourth 

They put a feeding tube in my nose when I went into ICU. I had trouble swallowing with that sucker in there. I had to take tons of meds everyday. I couldn’t swallow those.  They had to grind them up and push them through my feeding tube. They made some tech come in that did an ultrasound test while sticking things down my throat. Gag, gag, gag. Other damn tests they put me through during this time. Let’s send her up to the rehab floor. 2.8.19. NOT ACCEPTED. Their reasoning. Because I didn’t want to participate in physical therapy. WTF?  I never said that. Medicare wouldn’t cover it. Liars, liars, all pants on fires. 

Also 2.8.19. Psychiatric Consult. Dr. GagMe was thinking maybe I was sick in the head. I passed that consult with flying colors. I told him I just wanted to go home. I also had panic attacks when Brent would go home to shower. When he would get back, he would have me look in his eyes and calm me down. 

Back to the feeding tube. Everyday Dr. GagMe said he would send me home the next day. Every day that was a lie. On 2.12.19 he told me he would let me go home on Monday the 15th.  He came into my room and told me he wasn’t going to because I wouldn’t eat. I lost it. Here is what he wrote on his report that day. “Patient very emotional today with angry bursts of crying. She said she is refusing to eat unless we take out the feeding tube”. I remember telling him I just wanted to go home. I was tired of him always going back on his word. His exact words to me were, “I will take it out, but if you don’t eat so many calories with each meal, I will put it right back in tomorrow”. My sister Margaret was sitting right next to me on the bed, holding my hand while I was crying. When he said that to me, she looked right at him and said, “you should never have told her she wouldn’t be able to do something. She will prove you wrong”.  He got told off by two women that day. Bwaa haa haa. Needless to say, he had to eat his words the next day. He finally gave me the ok to be released. TRUST?

I was finally going home after spending 3 horrible weeks in the hospital. It’s got to get better, right?