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