A Look Back

Rick and I were taking a walk back to the hotel room tonight and I was thinking back on this experience and in a way comparing it to last year. During last year's trip I was so focused on Rick and what was happening that I didn't really take in the other people around us. This year, however, I did manage to get a glimpse of the other patients here. I noticed something I didn't even see last year, most of the other patients are MUCH older than Rick. Now I did say "most", because we had dinner with another PSCer named Trish and her husband Tom. She is a couple years younger than Rick and has two small children. So yes there are others here that are young as well.

We really are lucky to be here, being treated by the best. And it is comforting to know of others that have been here as well. Unfortunately the way my silly head works is that there is still a little voice in there trying to throw doubt into the situation. I don't know why that happens to me. I wish it didn't so that I could be sure in this situation. I really don't try to make myself so doubting. I hate that that is how I work.

I need to readjust my attitude when we get home and change my focus to our normal daily life. And I do have every intention of doing just that.

For right now I am still wondering what "stable" really means. I saw the itching and jaundice this past winter. So I know that things seem to be progressing. But I think that is how this disease works. It seems like sometimes it is worse than others. And I think that it just depends on how you are doing at the time of the doctor visit because it can fluctuate. But comparing last year to this year appears to be about the same. As far as I can figure that probably means it is slowly progressing, which is a good thing.

Even though this trip was expensive and Rick didn't end up needing many tests, I still think it was worth it. It was worth the money to get some reassurance from the best. Especially since we seem to have some issues with the doctor back home. Sometimes I know I need to trust my gut, but other times I know I need to trust in the doctors. And the doctor here should be trusted.

At least this time I don't feel like my heart is being ripped out. That is a big difference from last year to this year. And as much as I am trying to relax and enjoy a couple of days here, it is hard to relax in a place that constantly reminds me of why we are here.

We will be home soon. Saturday night we will arrive home around 11p.m. Then back to work. Back to parenting. Back to life.

Until next time,
Jaime

Wordless Wednesday

Medical Stuff (the reason we came to Mayo)

The reason for our trip to Minnesota was to have Rick's yearly checkup. It started out on Monday with a major amount of bloodwork and an abdominal ultrasound. The ultrasound took a lot longer than previous ultrasounds so we were a little concerned that maybe the tech found something to focus on. I enjoy watching the ultrasounds because I like to identify the parts and it makes me feel like it gives me a bit of a "look" at the situation. I guess it makes me feel like I have a little control over the situation.

Here is a picture in the ultrasound room after it was done. Rick looks really tired because he was tired. After that amount of blood is drawn he gets really tired. He came back to the hotel and took a 3 hour nap.

This morning was the appointment with Dr. L. We are very pleased with how it turned out. Dr. L said that the PSC seems stable at this point. He said that the bout of itching and jaundice that led to the ERCP this past February was just how PSC works and it seems to not be an issue now. He gave us LOTS of information and we also gave him LOTS of information. More on that in a minute. Rick appears to be doing good at this point. It is about time we finally got some good news. Dr. L talked about how important it is to get the yearly ultrasound and specialized blood workup. He said it would be good to keep coming back yearly but he understands that we live a long way from Mayo and it may not be financially feasible to come back every year. So we will see how things are going next year and then make a decision whether we can afford to go or not.

As worried as I was about how this would end up, it ended up all being worth it. It was worth the money and the time to hear from this doctor that everything seems to be good at this point. We had a great talk with him and laughed. Did I mention we gave him some information?? When he was checking out Rick he was looking at Rick's back and asked "where did they do the surgery??" When Rick showed him the scar in his abdomen the doctor was shocked!! He couldn't believe that spinal fusion could happen through the abdomen. Here was a world renowned liver specialist asking US questions about surgery. It was fun and he was really interested in how it all worked.

So in summary, Rick is doing good. YEAH!!! Finally something went our way!! Now we are in Rochester for a few more days with no appointments. We talked about going home early but decided to stay and do the tourist thing. We deserve a little break.

I would be very happy to answer any questions you may have about Rick's health or our experiences. Please don't be shy. If there is something you have be wondering or something you want to know please don't hesitate to ask. Just leave your questions in the comments with this post.

Thank you all for your support and prayers.

Until next time,

Jaime

Plummer House and Botanical Gardens

The People of Iowa Welcome You

We went for a drive and ended up in Iowa, Corn Country. So now we can say that we have been to Iowa. It is REALLY flat. No wonder they have tornadoes. There were corn fields as far as the eye could see.

For anybody that may be reading this that lives in the Midwest just know that this is all very different than where we come from in the Pacific Northwest. We are used to seeing mountains, and it isn't nearly this green. I find this all so pretty and interesting. I can't wait to go see more places tomorrow!

Until next time,

Jaime

Rochester Minnesota and Mayo Clinic

After this mornings tests (which I will write about later when we have more information) and after Rick's subsequent 3 hour nap (he gets really tired after that amount of blood is taken) we went for a long walk around Rochester.

We went to the University Shops,

where we had some FANTASTIC gelato.

We went to Newt's for dinner. We were REALLY looking forward to eating there again. They have FANTASTIC burgers. Rick had a Mike D's Fatty Patty Melt. It was two grilled cheese sandwiches used as the buns with fried onions, bacon and chipotle mayo. It was huge and he ate almost the whole thing.

Then we went for a walk around the Mayo Clinic campus and took some pictures. It is easier to take pictures in the evening when all the appointments are done and everyone has gone home. I am not going to label each picture because it is getting late and we have to get up early. So here is the Mayo buildings and surrounding area.

Can you tell me what's different about this picture? Look closely. Whoever guesses correctly wins 100 points. I don't know what you will do with the points but isn't more fun to win something?

Until next time,

Jaime