Goodbye 2008, Good Riddance

This has been one of those years that I am not sad to see go. It seems like the last couple years have been that way. And on each New Years Eve when the clock strikes midnight I think that the new year just has to be better. I don't know if I can even think about that tonight. Because for some reason I just have a feeling that it isn't going to get any easier.


2008 was filled with lots of bad things, but also some good things. Like:


The Good:
I was blessed with a great job
My beautiful niece Mady entered the world
We were supported by family and friends
The Mayo Clinic
Adding Jack to our family
"Meeting" some new friends
My blog (in my opinion)
Having a snow blower

To tell you the truth, I am having a hard time coming up with the good things. I even asked Rick and he just shook his head.

The Bad:
Samantha broke her arm
I HAD to go back to work
Rick's PSC progressed
Rick had 2 ERCP's
Rick had an ERCP that had some complications
Had to go to Mayo
Rick now has yellow eyes
Because of Gilbert's Syndrome
Worry about the possibility of new diseases, that were eventually ruled out
Testing Rick for lymphoma
Rick had a colonoscopy
Rick has a herniated disc
Rick had to have an epidural steroid injection
The injection didn't go as planned
Nothing really went as planned
Rick's migraines
I started seeing a therapist but had to stop because it was too expensive
Bills, bills, and more medical bills
A dishwasher that keeps breaking
Megan's behavior problems
People that don't get it

I could probably go on but it is getting depressing. And the finale to our great year (can you sense the sarcasm), Rick had a epidural headache all day. The doctor thinks it is a reaction to the dye used and the steroid leaking out of the spine. We were told to keep a watch out for worsening (is that a word) symptoms and if it gets worse to go to the ER. We spent New Years there two years ago, I am not doing that again.

So I think that probably sums up our year. I am having a bad night. I was really worried about Rick while I was at work. And the stress of it all is just coming to a boiling point for me.

But I do want to wish everyone a Happy New Year. I really do hope that 2009 brings joy and good health. Even if I do sound pessimistic tonight.

Until next time,
Jaime

6 a.m. Phone Call

I knew staying up late reading last night would be a bad idea. I just knew the phone would ring at the butt-crack of dawn. But since I am so super awesome I was totally able to be coherent at 6 am. So I had a nice long talk with Dr Lindor this morning. NO WILSON DISEASE!!!!! Can you tell I am happy about that?!?!?! That was what I was most scared of. So the high iron and low ceruloplasmin (too much copper) in the blood is caused from an inflammatory process going on inside the liver. That will happen with PSC. And the medication that Rick takes for the PSC actually tends to mask the actual liver enzyme panel numbers so it can be hard to tell how the liver is doing by bloodwork alone. The bilirubin is going to cause problems because of the Gilbert's syndrome, so that is number that will fluctuate. We just have to make sure that if we notice Rick's eyes get a lot more yellow or his skin start to turn yellow then we know it is the PSC and to call the doctor.

Rick will continue to have liver pain off and on. And I have had it described to me as if someone is taking a pair of pliers and grabbing and twisting the liver. That doesn't sound nice to me. So as far as what the stage the PSC is actually in can only be confirmed by a liver biopsy which Dr Lindor thinks is unnecessary at this point. So the plan is to monitor the blood work at four month intervals and return to Mayo once a year for a full evaluation. Dr Lindor thinks it is important to check everything out to make sure that there is no cancer forming, since that can happen with PSC. So Rick would go back to Mayo for an ultrasound and bloodwork, and those would tell us if further testing is needed. And it would be best to be at Mayo for further testing if that is what is needed. That will be a good way to keep track of how the PSC is progressing as well. And of course if there are problems throughout the year that would change the course of treatment.

So what does all this mean? It means that at this point Rick's PSC is progressing, but slowly. I am not sure how many of you know that Rick will eventually need a liver transplant, but it looks like that will be at least a couple years down the road. As the PSC progresses further it will damage the bile ducts and then it will just be a matter of time before he will likely need a new liver. Now in my little head I wonder why not just take out the diseased one now and let him feel better but that is not how organ transplant works.

On thursday we meet Rick's new internal medicine doctor. We will have lots of info to throw at him but also some other lingering questions. Like what the heck is going on with the low blood counts. And, um hello, where is the spleen? Dr Lindor's recommendation was to get another colonoscopy since it has been four years, so we will also ask the new doctor about that as well. Rick's local GI didn't think it was necessary for another year but with the crohn's/PSC combo it is better to be safe than sorry. So if we can get two doctors to recommend it be done now then hopefully we can convince the doctor to do it. After all, it has been four years since the first one.

So I think we have some good answers. I am going to try to go back to sleep for a bit. Hopefully that phone call is what I needed to get out of my funk. I just HATE that Rick has to deal with all of this. But now we have a better understanding of what is going on. And knowledge is power.

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. Matthew 6:34

Until next time,
Jaime

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