Our Week

Our medical EOB's and bills! Thank goodness for insurance!!

Boy, I'm trying to keep up the best I can with Nick's sickness, but it has been a crazy week. On Tuesday we saw the liver specialist at the U. Nice guy, not at all what I pictured in looks or personality, but seemed very knowledgeable and honest. After listening to the last 4 months of Nick's health, he told us that he was leaning toward another diagnosis which is called PSC (Primary Sclerosing Cholangitits). It is very similar to the PBC, but is found more in men, especially those with IBS. HOWEVER, because the MRI showed no strictures in his biliary ducts (which is a big indicator of this disease) he was not 100% positive that is what he has!! He also said that PSC does not come on suddenly like it did with Nick. It is usually very slow in progressing. Dr. Box thought that Nick was very atypical! Great!!! So, he started Nick on an antibiotic (he was running a fever), did a chest X-Ray to check for pneumonia, and ordered some more blood tests. One blood test looks at a specific protein in the blood that might help us know a little bit more. So, not really encouraging. We came home pretty bummed.

The next day, Nick went downhill. He had not had much to eat or drink the day before, so he was very weak, dizzy, and fatigued. We called the Dr. and asked if he could get a feeding tube. They made us come into the office to check him out and then they set everything up for Thursday. He was not looking good.

On Thursday, he had to go 4-6 hours without food/water, so his last drink was at 8:30am. When we arrived at the hospital there was some confusion on who had authorized it and who was setting up the home health care nurse. By the time he was done it was around 3:30. Nick said putting the tube in was horrible (almost as bad as his bone marrow biopsy). The only thing that got him through it was that he knew he needed some nutrition. So we headed home and just as he was getting into the house, he passed out. I was trying to hold him up so he wouldn't hit the garage floor and yelling for my father-in-law to come help. It was a scary moment. For the rest of the night I was on the phone trying to get everything set up for his first "feeding". He can feel the tube in his throat and so he didn't want to eat much because it was bugging him. Finally, at 9:30pm a home health nurse arrived to teach us everything about the feeding tubes. He is supposed to spend 14 hours a day hooked up to the machine that pumps high-calorie nutrition into his system. Each feeding we increase the amount to help his body adjust to the solution and give him more and more substance. Today, he has already noticed a difference in his energy level and overall dizziness. I talked to both of his Dr's (Dr Box and Dr Poole) and gave them an update. They gave me some things to watch for so I will know if we need to take him to the hospital. A positive sign is that when the home health nurse drew his blood last night and Dr Box compared it to the labs he had done on Tuesday, Nick's liver enzymes we going down! They are still very, very high, but at least they are going in the right direction! I hope they continue that way. Hopefully, this medication that helps both PBC or PSC is starting to take effect.

So, an eventful week. I know all this information is very boring, but it makes it easier to explain what is going on rather than repeat it to everyone I talk to. (It also helps keep a good medical history for future reference.) I'm learning so many things about "life" through this experience and I hope that when things slow down I can write more about my thoughts during it all than about our everyday actions.