Some of the results are in

We got back from the lake last night. I still have a ton of unpacking to do but I am just taking it easy for right now. My legs got super sunburned yesterday so I am in a bit of pain today. I got distracted and forgot to put sunscreen on my legs. Ooopps!!

We received a letter from Mayo in the mail today. I have been so anxious waiting to hear back that I almost called Mayo yesterday but Rick said to wait until next week so I didn't call. The results from further blood testing show that Rick does not have hemachromatosis. That is the iron levels in the blood. I don't know why his iron is so high but it is not due to hemachromatosis. Rick meets with his new Internal Medicine doctor on thursday so we will be asking him about the iron issues. It may just mean that he has to take a different vitamin without iron in it and watch his iron intake from food. So that is at least a bit of good news.

The results from the ERCP are also back. There is a lot of dilation and stricturing of the second and third branches of the ducts inside the liver. There is more disease involvement in the right side of the liver than the left. I am hoping that we will be able to talk with Dr Lindor about what all that means. But it looks like the common bile duct is involved as well (the doctor in Spokane said that it wasn't). So I know that a lot of you are probably wondering what all that means. The stricturing means that the ducts are narrowing and that makes it harder for bile to flow through the ducts. That is how the liver becomes damaged in PSC. It looks like the ducts outside of the liver are not involved. I do not know what this means in terms of outlook, but I am hoping to get that answer from Dr Lindor as well.

We have not heard about the results from the urine copper test. I will be calling Mayo on monday to find out if those results are back. Those are the results that I am most anxious about. If there is copper in the urine then we will be heading back to Mayo for a liver biopsy. That is what I would like to find out so that I can try to get Rick back there before school starts for the girls. The more research we do about Wilson Disease the more worried we get. I know that it says that there are medications to help get rid of the excess copper but with two diseases that are damaging the liver I wonder what that means in terms of outlook.

There is another question that has been raised since we returned from Mayo. Rick had his bloodwork done for the doctor here and some of the lab values came back very low. He has had low white and red blood cells for a couple months that the doctor has been watching. Well it has dropped significantly in the past month and a half. So he will do more bloodwork next week and if it is still low he will be going to a hematologist to find out what is happening with the bloodwork. I can't believe we are potentially adding another "ologist" to Rick's list of doctors. This is getting ridiculous. Just when I was starting to relax at the lake we get a phone call from the doctor's assistant that says to call back right away. So we had to leave the lake again for more bloodwork to rule out mono. I thought it was a silly thing to be testing for since Rick would know if he had mono but the doctor said that it had to be ruled out to procede. Of course it came back negative. So now we wait until thursday and do bloodwork again and hopefully know by friday if the counts are still low. If they are we will have another doctor appointment to schedule. So right now Rick is more susceptible to infection and he has to be careful to not be around anyone with something contagious.

I feel like just when things are maybe looking better something else comes along to kick Rick in the butt. He had a day with really bad liver pain while we were at the lake and it just reminded me of what our life is turning into. I have to figure out the best way to cope with all of this so that it doesn't continue to knock me further down. Rick amazes me with his ability to cope with all of this. I think that being at home makes it worse for me. It is my comfort zone so I feel like all my emotions boil over easier at home. I am taking it one day at a time though.

I will post pictures from the lake later. I have to get some unpacking and laundry done. Tonight is Rick's last night of vacation so we will spend some final free time together.

Until next time,
Jaime