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

Family Fotos

I tried to get some different shots of us while we were at the lake. And then I had some fun with the editing software. I have been experimenting more lately with different shots and poses. I was getting very tired of the same old shots everytime. I think it gets old when looking through my photo albums and all the pictures are the same. This has been fun for me. I am hoping to get a camera with more functions at some point so that I can do even more. Although that will be a while down the road. But in the mean time I have been doing some research on how to focus differently and other compositions. It is a lot to learn and I am not sure how to do it all on the camera I have.

BTW, I called Mayo today and never heard back from the doctor. Hopefully tomorrow, but I hope he doesn't call first thing in the morning because that will be like 5 am.

Until next time,

Jaime

Bye-bye tooths

My little Megan is now toothless. Two days ago, July 26, Megan lost her very first tooth. I pulled it out because it was super loose. She cried and cried afterwards because she said it hurt. I felt so bad. But then she got an otter pop and that made it all okay. The big permanent tooth is already coming in behind it. That is how I found out that the tooth was loose in the first place. She was cuddling with me in bed and when she yawned I saw the big tooth behind her little tooth. I couldn't believe it and then we discovered how loose that tooth was. I was so worried she would loose it while we were gone but thankfully that didn't happen.

Today Nana (my mom) came over to see the missing tooth. While Nana was here we convinced Megan to let me pull out the other tooth because it was super loose too. Megan had not forgotten that having the other tooth out hurt so she was not really into it. But Nana bribed Megan with two dollars so she let me wiggle the tooth and it just popped out, with a little bit of crying. It was funny because Megan didn't even realize I had pulled out the tooth. When she saw it she was shocked. And of course she got another otter pop.

So now the tooth fairy will be visiting Megan for the second time in three days. I still have the tooth fairy pillow that I used when I was little so that is what Sam and Megan use to put their teeth in for the tooth fairy. On saturday night the tooth fairy left four quarters for Megan, I wonder if the tooth fairy will leave a little more this time since it has only been two days since she was here last.

The pictures are from saturday night after Megan lost the first tooth. You can see the hole where the tooth came out and the big tooth already coming in. You can also see the tooth next to it barely hanging on.


I can't believe that Megan has already lost two teeth. She just turned five less than two months ago. How can she be growing up so fast? She is still my baby. I can't believe how fast they grow up. Megan always asks me if I want her to stop growing and stay little. I wish that was possible. I wish she wasn't going off to kindergarten in September. I want to keep her home with me but I know that she needs to go to school. I look at her and think she doesn't look big enough to go to kindergarten. In my eyes I guess she is still a baby.

Until next time,
Jaime

Fun at the lake

The girls really had a fun time at the lake. I usually love being at the lake but this year was a bit different. I really did try to enjoy myself but my heart just wasn't into it this year. Despite that I did get some good pictures. And Rick had a good time fishing. He went fishing in the float tube one day and the rest of the time he spent on the dock.

The girls had a blast swimming. Samantha loves to run and jump off the dock. She likes to add "style" and spin around or spread out her arms. It took her until the last two days to get brave enough to jump off without her life jacket. The end of the dock was up to her chin so it took some convincing on our part for her to realize that she would be fine. But once she figured it out she had even more fun without the life jacket. And the goggles made it easier for her because she didn't need to plug her nose.

Megan is a bit more timid than Samantha, although that is hard to believe. Megan did not want to jump off the end of the dock. We tried that last year and she cried when she popped back up. But by the last two days Megan discovered that it was okay to jump off towards the shallow end. And she was so cute when she did it. She had to count or have other people count for her. And she finally discovered that the life jacket helps to float so she was swimming all around, above her head of course.

We had a couple camp fires and roasted marshmallows. Megan was so funny. She just really enjoyed burning the marshmallows. She would burn them until they fell off the stick. And then she would start again. There were a lot of wasted marshmallows but she had so much fun. Rick and I enjoyed sitting together in front of the fire after putting the girls to bed. We also had a great night sitting out on the dock by ourselves until 11 pm. We looked at the stars and just talked. It was so nice.

Here are some pictures of our two weeks at the lake:

We will be back at the lake next summer for two weeks again. I can't help but wonder what next year will bring. I remember last summer, when we were very financially strapped, thinking that the next summer would have to be better. Boy I never could have imagined that this would be how we would be spending this summer. But we are very blessed to have two wonderful daughters to keep us busy. They can really brighten up the day, or really make me mad, it just depends on the day. If only they would clean up their rooms.

Rick goes back to work in the morning. His beard had to be shaved off tonight. I actually cried when he was shaving. I REALLY liked the beard. Now it is back to the real world. Back to Rick working all the time and being tired. Back to going to bed at different times and waking up at different times. Back to not having any time together. Oh I want to go back.

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

I Am Not Strong Enough

I know that we are supposed to be relaxing at the lake but I just can't. I am having a really hard time since coming home from Mayo. I have been very emotional and all I want to do is just go back so that they can make Rick better. The possibility of adding more problems to the mix is driving me crazy. I am just so sad I can hardly take it. I look at Rick and think how can he possibly be so sick? And I am serious when I say that I better not hear anyone else say he doesn't look sick. That is the problem with all of this. He is so sick on the inside but doesn't look it from the outside.

I feel like I am going nuts waiting for test results. Rick finished the "pee" test today and we had it sent out to Mayo. I don't know how long it will take to hear back from them about that. I hope it doesn't take too long. That is the test that is going to tell us if there is copper in the urine. If there is we will probably be heading back to Mayo soon for a liver biopsy. I have made the decision that it is more important to get Rick good medical treatment than to have money. I don't know how we will continue to pay for our trips to Mayo but I know that he needs to go there for treatment.

I feel like I had so much inner strength when Rick really needed me to last week, but this week I am falling apart. I didn't realize how much energy it took to be strong for him and now I am exhausted and feel like I have been through the ringer. I can't believe he handles this so well. I am just scared that I will lose him to all of this. I don't know what I would do without him. I am just not strong enough to deal with all of this. I wish there was a way to fix it all now so that we can move on with our lives.

I know I must sound so pathetic. I am just teetering on the edge right now and I need to take a step back before I fall off. Please understand that I am not myself if you see me. I just need some time to absorb all that has taken place and figure out how to go from here. I love Rick so much. He is so wonderful to me and I am just so lucky to have him as my husband. I just want to hold on to him and never let go.

I hope that you will continue to keep us in your prayers. We both need them, even if Rick says he is fine.

I am going to head back to the lake this evening. Hopefully I will be able to start enjoying it a little bit more.

Until next time,
Jaime

Twin Lakes Here We Come

We are getting ready to leave for the lake. We will be spending 12 relaxing days at a cute beach house in Twin Lakes Idaho. This will be our third summer that my mom has rented the beach house. There is no internet service so I don't know how I will go that long without my computer but I have no choice. So I will be back on July 25th. I will have lots of pictures and stories to tell when I return. And hopefully we will also know some more about Rick by that time.

If anythings happens between now and then I will let you know.

Until next time,
Jaime