We are done

First things first, Rick is finally done being poked and prodded. He doesn't look like himself today. He is having some pain in his abdomen from the procedure yesterday and he just doesn't have his normal color back. He looks very tired. It breaks my heart to see him this way. I just wish I could make him better. I wish I could take it all away.

We met with Dr Lindor this morning. The results from the ERCP are not completed yet so he called the doctor that did the procedure and he was able to confirm the PSC diagnosis. We won't know the exact results until later so I don't have the answers for some of the main questions just yet. What we still need to know is how much of the ducts are involved and how much damage is there. What we do know is that the common bile duct, which is the main duct leading to the liver, is involved. It is dilated and that is more than likely the reason that the duct was cut during the ERCP. Of course we won't know for certain until we see the report. The ultrasound that was done here could not find the spleen either (the one done at home couldn't find it). So the spleen is still missing, but that is apparently not a problem. Sometimes the spleen can just be really small or deeper than the ultrasound is able to see.

Rick does have Gilbert's Syndrome. It is nothing that needs to be treated. It gives us the explanation for the elevated bilirubin and the yellow eyes. So that is one question answered.

There are two other things still being looked into. First off will be the Iron levels. Rick's iron levels are high so they are doing some more bloodwork to check for a certain gene mutation. To be completely honest with you I am not very clear on what this one means. We will know how this needs to be treated once the blood tests are complete. Second is his high copper levels. Rick had high copper levels in his bloodwork. So there will be a urine test to check for copper levels in the urine. That can't be done until we get home but it is no big deal. That will just be sent back to Mayo once it is done and then we will know if a liver biopsy is needed. If there is copper in the urine they will do a liver biopsy to check for copper in the liver. If there is copper in the liver then a diagnosis of Wilson's Disease will be made. This is one diagnosis we are really hoping won't be made. It is another potentially fatal disease. And it also damages the liver potentially leading to a liver transplant as well.

Hopefully the results from the ERCP will be ready before we leave here. The doctor will call if they come back today and let us know what the report says. If I hear from Dr Lindor I will let you all know what he says.

Dr Lindor's recommendation for Rick was to have full bloodwork done every four months that will be drawn in Spokane and sent to the Mayo Clinic. And a yearly ultrasound that he would prefer to be done at Mayo. So it appears that Rick may be making yearly trips to Mayo from now on. I don't know how we will afford that but it is necessary to keep a close eye on the PSC. The CA 19-9 tumor marker blood test and the ultrasound will be a good way to monitor for bile duct cancer. Dr Lindor said that as long as it is caught really early it will be treatable with a liver transplant. So it will be very important to keep up on that. Just for reference anything over 55 for the CA 19-9 is high and Rick's was 9. So that is a good thing!

So in conclusion (haha) Rick came to Mayo with three diseases and is leaving with the possibility of having six diseases. I hope everytime we come here we don't leave with twice as many problems.

As soon as I know any more results I will post them. For the rest of today we are just going to rest and reflect on this experience. As long as I can get the image of how Rick looked yesterday out of my head I will be okay. That was very tough on me and I am having a hard time looking at him without thinking about it.

And for those of you that have sent such lovely and supportive messages we both want to say a huge THANK YOU!! It means a lot to us to have so many people thinking about us. I have been told that I am stronger than I think I am. I have to tell you that it certainly didn't feel that way yesterday. And I still feel like I could fall apart at any minute. But I know that this has all been worth it. Thank you for following along this path with us. We love you all!

Until next time,

Jaime