One year ago

I am so very thankful that this has been a calm year medically speaking, at least so far. Today marks one year ago that Rick was hospitalized for complications following his ERCP. He became seriously ill with pancreatitis after the procedure. It was truly one of the scariest nights of my life, and lead to a very stressful week.

If you are new to my blog, or would like a refresher on what went down last year, here are the links to the posts that I wrote once Rick was released from the hospital:

ERCP/Pancreatitis Part 1
ERCP/Pancreatitis Part 2
ERCP/Pancreatitis Part 3
ERCP/Pancreatitis Part 4

I am really glad that I wrote those posts and documented everything. As much as so much of that experience is burned into my memory, alot of the little details have been forgotten.

We had a LOT of support from friends and family during the week long hospital stay. Did you know that I only left the hospital to shower and change clothes? I ate every meal there and slept in a recliner.

I am praying that this year continues to be uneventful. However I do need to schedule Rick for his yearly ERCP. And quite frankly that scares me silly!

I am taking to tonight to say some prayers and thank God for granting Rick some time to be stable.

Until next time,

ERCP/Pancreatitis Part 4

Rick's IV continued to drip his only source of nutrition at a quick pace. It also pumped him full of different antibiotics and his pain meds. After around 60 hours without anything by mouth he was allowed to have his first drink. The doctor decided that after the retching had finally stopped, Rick was safe to try a liquid diet. The first thing he had besides a sip a water was a purple popsicle. His liquid meals consisted of either chicken broth or beef broth, tea, juice, and jello. The jello wasn't really jello, it was a "gel treat" that was pretty gross, so that was never really eaten.

When every thing was all done Rick had a total of 4 different IV's placed. Unfortunately it was never easy to place those IV's because of how sick he was. Every IV took at least 3 different tries to get a vein that would work. And then every morning at around 5 AM someone from the lab would come in and draw blood. I lost count of how many times he was poked with a needle but it was seriously around 25 times. One of the IV sites caused phlebitis; his arm was really red and hot. The nurse even got a pen and made a line around the redness to mark it so she could keep an eye on it. Rick's arms are bruised from all the abuse they took in those 6 1/2 days.

The bloodwork results were something that we looked forward to hearing about every morning. We were surprised when, at first, the bloodwork got worse. I think I mentioned that at one point his lipase, which measures pancreas function, was at 5,600. Normal is 78. His bilirubin jumped up to 4.7 at one point as well and his eyes were more yellow than I had ever seen them. But now his bilirubin is normal for the first time in more than a year and his eyes are actually white. I don't know if the ERCP cleaned something out, or if the liquid diet and all the fluids flushed out the liver. Either way, for the moment he is no longer jaundice or itching.

We were really hoping to be home during the weekend sometime but Rick had a minor setback. After a couple days of liquid diet, and several short walks in the hallways of the seventh floor, Rick still wasn't feeling good. He was continuing to run fevers and his entire body would start shaking. So much so that it would shake the entire bed. He spent almost all of sunday asleep again. He had to be given anti nausea meds again too.

Thankfully all that sleeping seemed to really help and by monday morning he was finally feeling better. The doctor decided to start him on a very light diet of real food. His first real meal was a half of a turkey sandwich. When that seemed to work out he was finally unplugged from the IV fluids and started on oral medications. We continued to take walks around the hall and it was nice to see him finally making progress.

The girls came to the hospital a couple of times to visit with Daddy. On monday night Megan ate the dreaded "jello" while Rick ate his dinner of turkey and mashed potatoes. The girls were really worried about Rick and whenever Megan would get upset she would cry and say "my daddy's in the hospital." Samantha was pretty emotional about the whole thing too. But it was good for them to see him, and it was good for us as well.

Tuesday morning was a good morning. Rick was feeling better and was ready to go home. We got the okay from the doctor and immediately started packing the bags. Rick was given instructions on what to eat at home for the next week and prescriptions to finish up the antibiotics.

At 2:30 I went to get the car and waited at the front doors of the hospital for my hubby to be wheeled out to freedom. It was nice to finally bring him home. And even nicer to sleep in our own bed that night.

It has been a challenge to figure out what to feed him. He is on a low fat diet and I am obviously not a low fat type of girl. But so far it has worked out fine. However Rick has lost 10 pounds. I brought him some oral supplement drinks home from work yesterday. I need to try to beef him up before he goes in for surgery on tuesday. Yes you heard that right, he is still having surgery on tuesday.

I think that I have pretty much summed up our hospital experience. Rick remembers some of it, but not all of it. I, however, remember all of it. And the experience will not easily be forgotten. I realized I can handle more than I thought I could. But I would like to not have to pass that test again any time soon. I am more in love with my hubby than I ever thought possible. He is so strong and amazes me with his ability to fight everything that is handed to him. I will always remember stroking his hair and willing him to be okay. I will always remember the morning I went home and cried the entire way there; begging God to make him better. And even though it seems like I was strong, I felt so very weak. But I would do it again, I would do anything for that man.

Until next time,

Jaime

ERCP/Pancreatitis Part 3

When we arrived on the fifth floor we discovered that Rick would have a roommate. Apparently the hospital was very full that night. I had this sinking feeling because I knew that I wasn't supposed to stay in the room when there is another patient in it. But little did I know that my mom was looking out for me and asked the nurses if I could stay in the room and arranged for me to get a recliner to sleep in. Rick asked for a private room and was put on the waiting list.

It was crazy getting him settled. There were lots of questions to answer. Rick told the nurse that I could answer for him because he wasn't feeling up to it, but the nurse didn't seem very impressed with that and kept looking at him after I answered the questions. Another nurse was setting up the PCA pump, you know those pain pumps with a button to push that gives nice pain meds. When all of that was finally finished my mom and Heather left, I think it was around midnight by that time.

Unfortunately Rick's roommate had different plans than us and kept his light on all night long. Rick was up retching most of the night and in between episodes couldn't get any sleep because the old man had his light on. He apparently had a "condition" that required him to leave his light on at night so that he could read whenever he couldn't sleep. He called it his valium. Rick was ready to kill him and I was plotting how to smother him with my pillow. I think I may have gotten a combined total of an hour of sleep. Maybe.

Here he is in the middle of the night trying to rest. Can you see how bright that light is?


I just felt so bad for Rick. There wasn't anything that I could do except just stand beside him and stroke his hair. I don't know about anyone else, but that always helps me feel better. What made it even worse for him was that he was not allowed to have anything by mouth. He was not allowed to have a sip of water even after throwing up all that nasty stuff. I won't describe it but it was really disgusting. They did bring him these little spongy things he could use to swab out his mouth, but that just didn't really cut it. And to make things even more unbearable he was put on bed rest, which meant he wasn't allowed to get out of bed. We found out later the next day that he was on bed rest because of his back. Apparently someone got some wrong information and thought that his back made him unstable. Once that got straightened out he was allowed to get out of bed and use the bathroom.

He slept pretty much the entire day on thursday. He only woke a couple times to push the pain button and to throw up. Other than that I just sat next to his bed and watched him sleep. My mom came to the hospital and sat with me. And she sat with Rick while I went home to shower and get some supplies for the hospital. It was later that afternoon that Rick was finally transferred to a private room on the seventh floor. It was so nice to finally have some peace and quiet, and privacy.

Rick finally got a break from the retching for a few hours. Luckily the next morning would be the last time he would actually throw up. However the pain was still very bad, and it was pretty unbearable whenever he had to get up to use the bathroom. Pretty soon he did have to start getting up quite frequently because they were pumping him full of IV fluids. But it was sad to see how much he was hurting, especially when he had to get up. I had to keep persuading him to use the pain pump because he didn't want to use it. The nurses and I had to convince him that he didn't have to be in pain, and that he would heal faster if his body wasn't in pain.

So by this point he has been in the hospital for 24 hours. I am still hanging in there, but it is starting to wear on me.

I think this is enough for now. I will continue later tonight. I hope you all aren't bored with this. I kinda want it all written down as a reminder for myself. And maybe someone else is interested in it too. Right Jackie?!?!

Until next time,
Jaime

ERCP/Pancreatitis Part 2

I looked around the very crowded emergency room and was very worried that we would be waiting a long time to see a doctor. I approached the reception desk and explained the situation and how sick Rick was getting. I was handed some papers to fill out, and in my anxiety and fear I proceeded to fill out my name. I stood next to Rick as he sat in the wheelchair looking very sick and a little on the pale/green side. I was trying to finish filling out the paperwork when a concerned triage nurse pulled Rick into the triage room and started checking his vitals. I told him that I was parked in a no parking zone and he got the security guard to open the gate to the doctor's parking so that I could move the car. I ran to the car and back because I was scared to leave his side.

Rick was then "fast tracked" back to a room. By that time he was getting very chilled and was asked to take off his shirt and then just left there without a gown to put on in its place. I grabbed his shirt and sweatshirt to drape over him so he wasn't so cold. The nurse was not the nicest of people. A doctor was in the room very quickly and asked about the ERCP. He felt Rick's abdomen and discovered that it was EXTREMELY tender. The doctor was very worried about what might be happening. His biggest worry was that there might be a hole in the bile duct somewhere that was leaking. That could have been very dangerous. He ordered a CT scan to be done to check on any leaks. The nurse then attempted to get an IV started and draw blood. Unfortunately Rick was so sick that it was almost impossible to find a vein. And Rick is usually the easiest poke ever.

After MANY pokes she was finally able to find a vein. All the while Rick is very out of it. He spent most of the time asleep. He was feeling nauseous but had to drink four cups of contrast for the CT scan. I kept pouring him the glasses and cheered him on as he drank it. He was able to get those down. Soon after that is when things got much worse. He suddenly was shaking bad and his pain had skyrocketed out of control. He said his pain was a 14, and the nurse said that the pain scale only goes to 10, but Rick insisted it was a 14. His jaw just quivered and his neck got very stiff. He was basically writhing in pain. It was all I could do to hold it together. I was so scared as I watched him get progressively worse and worse. I was afraid that I was watching him die. I am not exaggerating. I just rubbed his head and told him that it was going to be okay. My mom was there with us and she was out in the hall trying to find someone to come give him something for the pain. The nurse finally came in and gave him something but it didn't seem to make any difference. It was at that time that I decided that it was time to have his parents come to the hospital. They were staying at home because they had our kids.

The radiologist came to take him for the CT scan. At the same time our friend Heather was arriving with some food for me. I decided to stay back in the room and my mom followed him to the CT. It was then that I lost it. I just couldn't believe what I was watching. I thought that I was losing my husband. I also knew that I needed to eat so that I could be strong for him. So that is what I did.

It wasn't very long and Rick was being brought back into the room. By that time he was extremely nauseous and shaking violently. My mom actually went into the CT room with him because he was so sick. It is really hard to explain how I was feeling at that point. I don't think there really are words to describe what it is like to watch someone that you love so much in such excruciating pain.

His parents arrived at the hospital soon after that and there was a room full of people just staring at him. I just stood by his bed and stroked his head. Then a nurse came in to draw some more blood to test for an infection in the blood. She couldn't use the IV to draw the blood though and had to get a certain amount of blood from each arm, so that meant several more pokes because a vein was not easy to find. You would not believe the amount of bruises and needle pokes he has on his arms right now.

Finally the doctor came in and told us that he had pancreatitis. The CT scan showed no leaks. The doctor looked me right in the eye and said "thank you for bringing him in, he is very sick." That was a scary statement. It was right after that that the puking began. And it lasted all night long and into the next day. He was throwing up fairly continuously for a few hours. It was horrible. And none of the anti-nausea medications were helping. Every time he started in again my mom and Heather would leave the room. Normally I am not much of a vomit person, but I was going to help him no matter what it took.

Pretty soon nurses were hanging IV antibiotics and rushing around getting him ready to be admitted. Before I knew it I was following him down the hall on the way to his hospital room. He was sitting up on the bed throwing up into a cardboard bowl as he was being wheeled down the hall and into the elevator.

I don't really know how I was able to hold it together as well as I did. I just knew that he needed me and I needed to be there for him. My legs felt like jello and my heart was pounding, but there was no way I was going to fall apart in front of him. He was too sick to see that and I was going to prove that I could be strong for him.

I will continue tomorrow with the rest of our hospital stay. Right now I am going to cuddle with my hubby.

Until next time,
Jaime

ERCP/Pancreatitis Part 1

Since the ERCP was what started this entire ordeal I thought I would post about what happened. We have both concluded that we were lulled into a feeling of things just being routine. Thinking that he would check in, get good drugs, wake up and go home. Unfortunately, as you know, that is not exactly how it turned out.

It did start out routine. Rick was taken back to get in a gown and get his IV started while I waited in the waiting room. Apparently they think there isn't enough room to have me back there while he is getting ready. Anyway, after about 20 minutes they came to get me and we joked while waiting for him to be taken for the ERCP. We were laughing because under the lights in the hospital my newly dyed hair looked kinda pink.

Here he is before, very thrilled I am taking his picture with my phone.

Soon after that he was wheeled into the endoscopy room and I was taken back out to the dreaded waiting room. I was told that if everything was fine and nothing was found it would only take about 30 minutes. So when an hour passed I knew something had been found. Shortly after an hour the nurse came to get me. I went back into the endoscopy room and spoke with the doctor. He told me that the PSC has progressed and there is a lot more narrowing of the smaller ducts and the common bile duct now has a dominant stricture. He didn't like the location of the stricture so he took some brushings of it to send in for biopsy. He said that at the moment it isn't narrow enough to block anything, but that probably won't last. I was told that during the exam no dye was injected into the pancreas and that there was probably not a chance of developing pancreatitis due to the brushing of the duct. Boy was he wrong.

Rick was taken to recovery and rested for about 40 minutes and then he was sent home. I asked if that was long enough recovery time and the nurse said that his vitals were good and didn't see a reason to keep him there any longer. So she called for transport to wheel him to the car and I went to drive the car around.

About a couple blocks away from the hospital Rick started to mention that his abdomen was sore. He just said it was probably due to the ERCP taking so long. As we got about four blocks from home he said he felt sick. I had to pull over and he starting vomiting out the door. We got home and I called the doctor. Rick basically passed out on the couch. The doctor said to get back to the hospital. I let Rick rest for a few more minutes and then told him the doctor wanted him to go back to the hospital. He didn't argue with me about going back, which was my first clue that he did not feel good. It was interesting getting him back out to the car. By that time he was really out of it. I covered him with his blanket, gave him a bucket, and started driving.

I drove fast! I got behind someone going at a nice pace on the freeway and just followed him. It seemed like it took forever to get him back to the hospital. I pulled right up to the doors of the emergency room, ran in and grabbed a wheelchair, and carefully helped Rick out of the car. I put him inside the hospital doors, parked the car in a no parking zone, and proceeded to get him checked in very quickly.

I will continue the story later. Right now I have to take Rick for his Pre-Op appointment.

Until next time,
Jaime

Feeling Better

Rick is starting to feel better. Not good, but better. He is still having pain in his abdomen, and now his back is really starting to hurt from being in bed. But he can finally have solid food, although it is very low fat for now. The doc said that if it tastes good don't eat it. Meaning it has to be bland and boring for a while. We don't want the pancreas over stimulated and have it get sick again. His bloodwork is finally going in the right direction. The Lipase is the factor that shows how the pancreas is functioning. A normal person's Lipase should be 78, at one point Rick's was 5,600. His bilirubin had also gotten pretty high and his eyes were turning very yellow, along with his skin. That has gone down too.

So it looks like Rick is on the path to going home. He will eat another meal tonight and tomorrow morning and then probably head home. Yippee!!!!!

So much has happened since last wednesday. I don't know what to blog and what not to blog. Like today he had his fourth IV started. He was poked by needles more than 30 times because his veins are reacting to how sick he is and they have gotten small and don't want to be messed with. He also was running fevers and would keep getting so chilled that his entire body would just shake. So many little things and so many big things have happened. I have never been so scared in my life. Quite honestly, at one point I thought he might be dying. And I think maybe the ER staff may have wondered that as well. I will never go in to another procedure thinking that it is just routine. I will never be comfortable having Rick go through an ERCP again.

I have only left his side to go home and take a shower, or go to the cafeteria for food. I have slept in a recliner every night. Right beside his bed. I love him so much and I just couldn't leave him. I just couldn't.

I have a couple pictures to post when we get home. But only a couple. I didn't really take many because he looked so bad. But I wanted to get a couple to document his very first inpatient stay at a hospital.

Keep checking my Twitters and I will blog again when we are home.

Until next time,
Jaime

Pancreatitis Sucks!!!!!!!

So as many of you know by following my Twitters on my sidebar, Rick is in the hospital with pancreatitis. He had his ERCP on wednesday and he developed a severe case of pancreatitis. It was so bad that I honestly thought he was dying. And Rick says it felt like he was dying. He was very out of it and doesn't remember very much. I have never ever been so scared. His pain was through the roof. He is on a liquid diet and even still doesn't want to "eat" that.

I have never seen Rick like this. It has been a long few days. And I haven't had my computer. My good friend Heather brought her laptop to the hospital today and that is how I am able to update. I promise to update with a lot more information later but for right now I just wanted to post a quick update. If you want to know what is happening just follow me on Twitter. That is my only way to update at the moment.

I have been staying at the hospital with Rick so I haven't even been home to get on my computer.

I hope that you all will please pray for Rick as he is trying to heal from this. He is going to be rescheduling his back surgery. Right now he is too sick to be able to go through major surgery. Please just say a prayer for a quick recovery and for him to get home.

Until next time,
Jaime

ERCP

Rick will be having an ERCP tomorrow (wednesday) afternoon. He has to check in at the hospital at 2:30 for a 4:00 procedure. It should take about 90 minutes, after which he will need to be in recovery for another 90 minutes. However, the outpatient unit closes at 6:00 so he will be recovering in a room in the hospital instead. Last time he had an ERCP at this hospital he was kicked out VERY quickly so I asked about that and was told by the fabulous nurse that that would NOT happen this time. She said he will be monitored for at least 90 minutes, but because it is so late in the day and he will be on the "floor" so he won't be hurried out. So hopefully this time will go much smoother.

The phone call from the nurse yesterday was to pre-register over the phone. It is a new procedure the hospital started to cut down on paperwork during admitting. And they let me be the one to answer the questions. The nurse was impressed by how much I knew. She was wonderful and was amazed at all Rick is going through right now. It always puts things in perspective when an actual member of the medical field is amazed at everything he has going on.

I always get nervous before big procedures like this. I know they are "routine" but somehow it never gets routine to have my husband going through these kind of tests. I am kinda glad I have to work in the morning because it will keep my mind off of what will happen later in the afternoon.

I will update Twitter throughout the afternoon and evening. You can check in for updates on how he his doing and if I am hanging in there as well.

Until next time,
Jaime

You need to call us back

Today we had a message on our voice mail telling us to please call the hospital back within the next day. It is the hospital that Rick is having his ERCP done at on wednesday, not the surgery in two weeks. We have never needed to speak with a nurse before the procedure before. I wonder what this is all about??? She will apparently call me back tomorrow at noon. HMMM.....

10 Months

Rick went in for bloodwork this week because he is itching all over. Itching is a side effect of the PSC that he has managed to avoid up until this week. His bilirubin is elevated so the doctor that was in the office wants Rick to have an ERCP as soon as possible. The regular GI doctor that Rick sees is out of the office until monday, and his soonest available time for the procedure is not until February 25. On monday the nurse will call back if the doctor wants him in sooner. Hopefully the ERCP will clean up the bile ducts and help stop the itching. This is just another log on the fire I guess.

So I was thinking about how Rick was having another procedure. And it got me thinking about what has happened to him in the last 10 months.

This will be his 3rd ERCP
2 Ultrasounds
1 MRI
The Mayo Clinic
Gallons of Bloodwork
Testing for Lymphoma
Testing for Wilson's Disease
Testing for Hemochromatosis
1 Epidural Injection
1 Colonoscopy
An unstable and bulging lumbar disc
Gilbert's Syndrome
Itching
Cholangitis attacks

I don't know if I left anything out or not but that is a list of everything I could think of right now. And it is of course not in any type of order either. As I look at that list I realize how the doctor's bills go so high. Not to mention the amount of medication he takes. And that does not include the regular checks with the different doctors involved in Rick's care either.

It doesn't make it any easier now that I am having stomach problems as well. I do think that I am starting to feel a little better. What I eat makes a difference in how I feel. Like today I was feeling okay until after dinner. But at least it is getting a little better. I need to take care of myself so that I can take care of Rick. That is what the doctor said to me anyway.

So now we have a new issue to deal with. I just pray that nothing worse is going on in that liver. Rufus better be behaving himself. (we named the liver Rufus)

This too shall pass.

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

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

We Are Home!!!!!!!!

We landed in Spokane at 10:10 am this morning. We got up at 4:30 am central time this morning, so in pacific time it was 2:30 am. We are tired. The girls are home with us now and cuddling with us on the couch while Rick watches Ice Road Truckers. It is good to be home.

Rick is not feeling great due to some lingering pain from the ERCP and a stomach ache from the antibiotic. He is not supposed to be lifting anything so I have to keep taking things away. I have lots of unpacking and laundry to do today.

I have some other things to say but I will post them in a little bit. I just wanted everyone to know that we made it home safe and sound.

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

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