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

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

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

Rochester Welcomes You

We are VERY tired tonight. We were up bright and early at 4 a.m. this morning to get ready to leave for the airport. My Mom arrived at 5 to drive us there. Thanks Mom!! We got there with just enough time to check-in and get through security. I really hate going through security!

Our flight was delayed 50 minutes due to some people arriving late and the back up at the check-in counter. The pilot made up some time during flight and we landed 30 minutes late.

We went across the street to Mall of America to burn a couple hours before heading to Rochester. We ate at Bubba Gump Shrimp and just browsed the first level.

The drive in to Rochester was nice and quiet. The scenery is so different from home. There are green fields, mostly corn, and big red barns. Lots of big American flags flap in the breeze as well. It was very pretty.

We had some problems checking in to the hotel. It didn't have to do with the hotel, but with the credit card we planned on using. Credit card companies are heartless and greedy!!! The man working at the front desk, Ben, was awesome and said there was no way he was going to turn us away. We will deal with it in the morning and he said not to worry about a thing. He said that we should focus on the reason we are here and not to let this worry us. How awesome is that??? This is the same hotel we stayed at last year, and we will stay here when we come back again.

The appointments begin first thing in the morning. Rick is scheduled for bloodwork and an ultrasound early tomorrow morning. They are like vampires here and will take a LOT of blood tomorrow. He had to eat a fat free meal tonight and now can't eat anything until he is done tomorrow. Hopefully it won't take a long time and he won't have to wait too long to be able to eat again.

He is scheduled to see Dr. Lindor early Tuesday morning and we will go from there as far as any other testing that gets scheduled.

I will post some pictures tomorrow. I would have posted some tonight except that I left my usb plug for my memory stick at home so we have to go to WalMart tomorrow and pick one up.

Keep Rick in your prayers that the blood draw goes smoothly tomorrow. Ever since he got sick this spring his veins have decided that they DON'T like to be poked.

Until next time,
Jaime

Leaving on an Jet Plane

I think I may have used that same title last year. Well anyway, our flight leaves in 8 1/2 hours. I will update via Twitter and Facebook while we are gone. If you aren't following me on Twitter you can check in my sidebar to the right of my blog. I will update on what we are doing and about any new information as we get it. Be sure to check back in on the blog as well. I will be blogging about our adventures and the medical stuff too. Which is the reason we are going anyway.

Pray for a safe flight and that we are able to get some good answers.

Until next time,
Jaime

Bad Day

I had such a bad day at work today. And it isn't the job, it is someone at work that hasn't been very nice to me ever since I started working there. I really love my job, and everyone else that I work with. But this person was so rude to me today that even my boss had a talk with me after everyone had left and told me that I am doing a good job. And he isn't one to hand out the compliments. I have been working more hours and I am not used to being gone for so long. So it is hard for me sometimes to be at work, but then to be treated like I was today makes it even harder.

And then to top off the day I got a call from the GI doctor's nurse saying that the doctor doesn't think Rick's itching is due to the PSC, but caused by some kind of allergic reaction. He hasn't changed anything; not soap, medications, food, nothing. I KNOW it is the PSC and not an allergic reaction to something. And Rick feels the same way. He is going for even more bloodwork tomorrow to prove the doctor wrong. This doctor always seems to pass off the PSC and tries to blame something else for any symptoms Rick may have. Whenever Rick has what we know to be a cholangitis attack the doctor always says it was probably just the flu. The problem is there is only one hepatologist in our area and he is impossible to get an appointment with. So we are forced to stay with his current doctor. This is the exact reason we went to The Mayo Clinic this past summer. And right now I am really wishing we could deal with that doctor, but it isn't that easy to just jump on a plane and go pay him a visit. Hopefully the benefit for Rick in March will raise enough money to get him on a plane this summer to go back for the yearly visit the Mayo doctor wants Rick to make.

Rick takes a medication for the PSC that doesn't control it, or really help it in any way. But it does keep his liver enzyme numbers looking normal. Ever since he started taking this medication those numbers have stayed normal. I think that may be part of the problem with his doctor not giving much attention to the PSC. Rick is considering not taking that medication anymore because it has already been proven to not really do anything but keep the numbers normal anyway. His Mayo doctor was one of the leading doctor's in the study of this medication and has drastically lowered most patients intake of the drug anyway. So Rick is contemplating whether to refill the prescription or not since it runs out this week.

I know I said before This Too Shall Pass, but sometimes it is so hard to stay in that frame of mind.

Until next time,
Jaime

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

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

Good-Bye Mayo

Good bye Mayo Clinic. It has definitely been an educational experience. This is the most amazing place to be. This is the mecca of medicine. I am so glad that we were blessed enough to be able to come here. I know we are leaving with some unanswered questions but I know that Dr Lindor is working to get us all the answers we are seeking. It will still be a couple weeks before we know more about Wilson's disease but we are researching as much as possible so we know what to be asking if that is in fact the diagnosis. Hopefully it will be sooner than that when we learn about the iron tests (hemochromatosis). I was able to get a little more information from Dr Lindor about the ERCP. The right side of the liver is more diseased than the left side. There is some small duct blockages from my understanding and the ERCP confirmed the dilation of an area of the common bile duct. The entire report was not back yet and Dr Lindor said he would send us the entire report when it is all back. You know I will be waiting on pins and needles waiting to get that in the mail.

Since this is our last night here in Rochester I thought I would post a couple more pictures of the area we have been getting to know very well.

In front of the Mayo Building:

The entrance to the Mayo Clinic:

The view from the 19th floor of the Mayo building. This is where Dr Lindor's office is located:

The Gonda Atrium:

The Chihuly Sculptures hanging in the Mayo Nurses Atrium:The Mathews Heritage Dome:

The view looking out from inside the Heritage Dome:

The underground pedestrian subway system that links the Mayo buildings and local hotels:

One of the direction maps inside the subway:

I know this is an experience that I will never forget. The feeling of helplessness and fear that I felt yesterday will be hard to forget anytime soon. The thought of what happened yesterday still makes me ache inside. And I know that yesterday I proved to myself that I can handle more than I thought I could. I hate vomit. I always gag and even when the kids get sick it is all I can do to not throw up when trying to help them. But yesterday I didn't even flinch when Rick started getting sick. I knew he needed me and I was right there to help him. He doesn't remember much about it except that he got sick. So I was hoping for super silly Rick and instead I got super sick Rick. I don't want to see super sick Rick again.

Even though this was a very stressful week for me I did enjoy having Rick all to myself. He works so hard that I don't get him to myself very often. It was nice to take walks together and hold hands and just talk without being interrupted by little girls. I realized just how much I really am in love with my husband and how much I miss him when he is working. I am grateful for such a wonderful husband. I am a very lucky woman. And I am falling apart inside thinking of all the new challenges he is facing. But he has the most amazing outlook on all of this and I am going to follow him through this with as much grace as he has.

Rick wants you all to know that he is grateful for all the support and encouraging messages from everybody. I wanted him to let me put his words and how he feels about all this on the blog but he didn't want me to say how he feels. He just wants to say thank you to everybody for caring about him, and us. And I second that. So thank you all very much.

Our plane departs Minneapolis at 9:10 am (central time) and lands in Spokane at 10:15 am (pacific time). So the next time you hear from me I will be back at home with my girls.

With many thanks and love and hugs,

Jaime and Rick

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

Really Hard Day

Today turned out to be REALLY rough for Rick. He was not worried about it going in but I had this terrible feeling something was going to go wrong. Apparently the endoscopist had to cut into the common bile duct so that has caused him some pain. And after he was brought back to recovery he was not feeling good and starting throwing up blood. His blood pressure fell and he lost all color. It was very scary for me to watch. He has never had a problem like that after having an ERCP, the only problem he had before was being extra sleepy from the sedatives. Since the duct was nicked he has to take an antibiotic for a week to make sure an infection doesn't develop. The ERCP took a lot longer than the last one he had done at home. And so tonight he is not feeling good. He was in recovery for a long time and we haven't been back in the hotel for very long. I had to push him back to the hotel in a wheel chair because he is too groggy to walk very far.

On top of my being VERY anxious about this procedure there was a severe storm rolling through Rochester during the wait. I was in the family lounge watching the emergency broadcast warning of the dangerous storm. The nurse came in the lounge and closed the curtain and told us to stay away from the window. And then we were told to move to the nurses station if a tornado warning was broadcast. So of course that didn't help my nerves. I took a picture of the clouds from the window in the lounge (it is posted below).


BEFORE:

DURING:

AFTER:
We have an appointment with Dr Lindor at 8 am tomorrow morning. Rick is not allowed to eat anything until after that appointment because they may still order a liver biopsy. So tonight he is only allowed clear liquids like jello and chicken broth. He is feeling a little hungry but he doesn't feel good so that makes his hunger a little less. I am not feeling really great either. The stress of this is really starting to take its toll on me. The nurse was nice enough to give me a sandwich while Rick was in recovery. I wasn't prepared for being there that long so I didn't have anything but some crackers. I wasn't prepared to see Rick that way. I am reeling a little bit tonight.

I will post tomorrow after the appointment with what will hopefully be a lot of answers. Please keep Rick in your prayers tonight.

Jaime

Please Pray

We are getting ready to head out the door for the hospital. I am very anxious. My hands are shaking and my stomach is in knots. Rick is fine, at least he says he is. Like he said, he gets to go to sleep and I am the one that has to wait and worry.

So this is what we are hoping to happen while we are at the hospital. We would hope that if you check in on us here on the blog that you leave us a message. We would love to have lots of comments to read when we get back from the hospital. That would be wonderful, but no pressure.

It looks like the doctor appointment will not be changed. We will meet with Dr Lindor tomorrow, so we won't have any answers today. I am disappointed and this will just extend the nervous feelings I am experiencing. Please keep us in your prayers as this is the hardest part of this entire experience.

I will let you know how he is doing once we are back in the hotel and settled in.

Jaime

Changed

The ERCP has been changed. Rick checks into Rochester Methodist Hospital at 12:30 thursday afternoon for a 1:30 procedure. The doctor appointment is still being rescheduled and we will know what time the return visit with Dr Lindor is by the morning. So this will leave friday open for the possibility of a liver biopsy. So by this time tomorrow we will hopefully know more. I am not getting my hopes up for fear of still not knowing anything. And I am praying that I will not experience another anxiety attack while we are here. At least we were able to get things changed. So tomorrow will be busy. I will post after the procedure to let you all know how Rick does. Please pray for an easy procedure and recovery. Tomorrow will be a little rough on Rick. He is a little nervous since things are done a bit differently here. I will be praying that he gets through this with no problems.

Thanks for the support. We really need it!

Jaime

Cross your fingers

I just got off the phone with a scheduler at the doctors office. He said that he is going to try to get everything switched around and call me back. I asked about flying so soon after the ERCP and he said absolutely not to fly home on saturday. And then the doctor appointment that was scheduled for later in the afternoon was ridiculous because he probably won't even be done with the ERCP yet. So he is doing everything he can right now. So please cross your fingers that this will get worked out.

I had an anxiety attack this morning, my first one ever. I need to get this done for my own sanity. And Rick is starving so he would love to get this over with as well.

I will let you know as soon as I know if there is time to update.

Jaime

My Feelings

To read about how the day turned out check out my previous post.

While waiting for Rick to have his bloodwork done this morning I felt very overwhelmed and decided to write my feelings down. I wanted to capture how I was feeling more for myself than for anyone else but I want to post it here so that I have it later. So this is what I wrote at 8:30 this morning:

I can't believe we are here. This is so unbelievable. I feel like I am living someone else's life. I don't want to accept the reality of my husband having a life threatening illness. I want it all to just go away. I want to live the life I thought we would have. Don't get me wrong. I will do whatever I have to to keep Rick here with me. But my stomach feels like it is in my throat. My hands are shaking. How did I get here? How did my hard working husband get here? Why us? Why Rick? I know I need to trust God is looking out for us, but it is so hard. I never imagined I would be in a waiting room at the Mayo Clinic. I can't believe that we are the couple that people look at and feel sorry for. My husband is my soul mate, he can't be sick. This isn't what I had planned. This isn't what I dreamed of. I also never dreamed I would love him this much. This has created a bond between us that we never would have had. But nevertheless I still wish this wasn't happening. I certainly never thought Rick's first plane trip would be to Mayo. I thought it would be to Disney with the kids. I worry that some people just don't understand what this all means. I don't want anyone thinking we came out here for fun. Granted we had a couple nice days but today is not fun. Sitting here waiting is not fun. Worrying and thinking what next is not fun. Watching Rick struggle is not fun. I know he hides so much so he can continue to look strong. I wonder if he is as scared as I am. I wonder what he is thinking while he is waiting in the other room. I wonder if he feels like this experience is just a dream and he will wake up any minute. I feel like that. I feel like I am in someone else's life right now. I miss my kids, I miss my husband, I miss our old life. It breaks my heart to see him going through this. I just love him so much!

Reading that made me sad. I feel so helpless sometimes. I want to be strong but right now I feel so weak. I will get through this and look back and realize I was stronger than I thought I was. Rick is so strong. He doesn't show weakness. Does he have weakness? I wish I could look at this through his eyes and see what he sees. I hope he doesn't see how weak I feel. I hope he doesn't see the tears in my eyes I am trying to hide.

More questions than answers

Unfortunately we don't have the answers we were hoping to have today. After giving 7 vials of blood this morning and fasting for 18 hours we have more questions than answers. In fact we don't have any answers. We met with Dr. Lindor this morning and he did not like the test results we brought with us from home. And there is the possibility of adding another disease to the list. I am not going to tell you what that is until we know for sure which will hopefully be by friday. Rick felt terrible this afternoon while waiting for the ultrasound because he had gone so long without eating. I was able to be in the ultrasound room with him because he basically told the technician that I was coming in no matter what. We do not know the results from the ultrasound, we will know when we meet with the doctor again.

So whats next? Well Dr Lindor wants Rick to have an ERCP done here at Mayo. He had one done at the end of April at home but those are the test results the doctor isn't happy with. So he wants it repeated here. Dr Lindor doesn't usually schedule a ERCP to be done during an evaluation like this because he doesn't like to do them unless absolutely necessary because of the risks it carries. But he wants to see for himself so off to Rochester Methodist Hospital we go. That is a Mayo hospital connected to the clinic.

What is an ERCP? ERCP stands for endoscopic retrograde cholangiopancreatography. The purpose of the ERCP is to get x-ray images of the bile ducts and to treat blockages of the bile ducts. A scope is inserted through the mouth and down into the duodenum where dye is then injected into the bile ducts and x-ray images are taken. A camera is on the end of the scope and other tools can be used to take brushings for bile duct cancer and treat narrowings of the ducts. IV sedation is used for comfort. And Rick is so super funny when coming out of that stuff. Hopefully that wasn't too much information. But I figured there would be lots of people that didn't know what an ERCP was.

So there you have it. I still don't have any answers and Rick has to go through an invasive procedure. We are asking you all to please pray that there is a cancellation so that he can have the appointment moved up. Currently the ERCP is scheduled for friday at 11:30 and our final appointment with Dr Lindor at 3:15. The problem with this is that our flight home saturday morning is very early and it makes me very nervous to have him get on a plane so soon after that test. Pancreatitis is a side effect of an ERCP and can involve an overnight stay or longer at the hospital if it develops. Since he has never had the brushings done for cancer, and that will be done this time, we don't know how his ducts will react. I would hate to have him start feeling very ill while we are in the plane. So I hope you will join me in praying for a cancellation.

Rick is sleeping right now. He is worn out from today. I will let you know how he is doing and let you know if the ERCP is moved up sooner.

I am very stressed out and worried about all of this. I am praying for the strength to make it through the rest of this experience. I miss my girls and can't wait to come home.

Until next time,

Jaime

Tuesday's Appointments

I guess the timing for all of this is working out great. Rick's eyes have gotten more yellow and he has been having more liver pain. He has been having pain while we have been here. We really are hoping that tomorrow's appointments produce answers and hopefully more tests will be scheduled. We are hoping to make the very most out of the Mayo experience. Rick had to eat a fat free meal tonight, which is hard enough for him to do because he needs the fat. The dinner had to be eaten by 7 pm and now he is only allowed to drink water until midnight. After midnight he can have a few sips of water and that is it. Poor guy, he munches all the time and so he is already hungry again and dinner was only 2 1/2 hours ago.

The itinerary for tomorrow goes like this:
7:55 check in at administration
8:40 bloodwork (lots of vials of blood)
after this he is able to drink more water but no food yet
10:00 medical history
10:30 appointment and evaluation with Dr. Lindor
1:30 abdominal ultrasound
after this he should be able to finally eat, but we won't know for sure until after the appointments

We have to go back forth between three different buildings to go to all the different departments. It will be a busy day and we are both a little nervous. Our Mayo experience is about to begin. This is where we pray that we will get the answers we are looking for. Hopefully by the end of the week we will have a complete understanding of where Rick stands with the PSC.

I can't believe this is about to happen and I just pray that I will be able to sleep tonight. I need to be strong for Rick. He needs me even if he won't admit it. I just have to be strong.

I am going to go cuddle with my husband now. I will post after we get back from clinic tomorrow. Please keep us in your prayers.

Until next time,
Jaime

The Mayo Clinic

We walked around the Mayo Clinic campus this afternoon. It was very warm and humid. We did not go in to any of the buildings but I took lots of pictures of the outside of the different buildings on the campus. It is amazing and there are some absolutely beautiful old buildings as well as the new, bigger buildings. The outside of the main mayo building which is the Mayo Building and Gonda Building is windows and panels of marble. It is a really neat area. There are lots of shops and restaurants all around the campus. There are beautiful courtyards with gardens and fountains. There are benches made out of granite too. There is a lot more to see and do that we hope to be able to fit in this week. So here are some of the pictures I took today. And yes there is a duplicate picture on here, I accidentally uploaded it twice and then couldn't delete one of them.

We also took a drive to Wisconsin and drove along the Upper Mississippi River Valley on the Wisconsin side of the river. I took lots of pictures of that as well that I will post another time. We are trying to enjoy ourselves and relax before all the tests begin. Tomorrow we are thinking of going into Minneapolis for a while. We have to be back by 6 pm so that I can make Rick his fat free dinner that he has to eat before 7 pm. I will post the itinerary for the first day at Mayo tomorrow so that you know what we will be doing on tuesday. Originally Rick was scheduled for bloodwork tomorrow but it was moved to tuesday.

Until next time,

Jaime