Liver Life Walk 2010

Hello!!!! Can you believe that I am actually updating my blog. Goodness it has been a long time!! It has been a busy summer and I can't believe that school is about to start again.

I actually have a selfish reason for updating. I wanted to let you know that I have created Team Rick again this year for the Liver Life Walk. We are super excited to be doing the walk again this year. Samantha is really looking forward to it again as well. It is September 12, so time is really running out for me to get some donations for our team.

You can visit my personal fundraising page by clicking here. I really appreciate donations. Any amount is great as it all adds up.

We had so much fun last year and we are really looking forward to being there again this year. I am very happy to report that Rick's health has been very stable this year. We don't take that fact for granted however. I know it can change in the blink of an eye. Which is why this fundraiser is so important to me.

Thank you in advance for anyone that is able to make a donation. I will post more information as we get closer to the walk.

Until next time,

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,

Liver Disease Facts Part 3

It is time for another installment of Liver Disease Facts. Remember that October is Liver Disease Awareness Month. And also remember that I am totally borrowing these facts from Shawnee.

1. About 15,000 children are hospitalized every year with pediatric liver diseases or disorders. How sad is that?? Nobody would accuse the kiddos of having liver disease because of alcohol. Just saying.

2. More than 15,000 patients are currently registered on the liver transplant waiting list of the United Network for Organ Sharing (UNOS), while only about 4,500 cadaver donor livers become available for transplantation each year. That is a seriously scary statistic. It seems so simple, just be an organ donor.

3. Nonalcoholic fatty liver disease (NAFL) and Nonalcoholic Steatohepatitis (NASH), obesity-related chronic liver disease, may affect as many as one in every four adults over the age of 18. Thin people or of average build can also get fatty liver. In fact, people can develop fatty liver even if they do not experience any health conditions such as obesity or diabetes. See, "Nonalcoholic".

4. Drugs can cause liver disease in several ways. Some drugs are directly injurious to the liver; others are transformed by the liver into chemicals that can be injurious to the liver directly or indirectly. (This may seem strange in light of the liver's important role in transforming toxic chemicals into nontoxic chemicals, but it happens.) There are three types of liver toxicity; dose-dependent toxicity, idiosyncratic toxicity, and drug allergy. The most important examples of dose-dependent toxicity are: Tylenol (acetaminophen), statins (cholesterol reducers), Niacin, Amiodarone (Cordarone), Methotrexate (Rheumatrex, Trexall), many antibiotics, NSAIDs, and even some vitamins and herbs. This is exactly why it is so difficult to treat all of Rick's conditions. Since his liver is already damaged that rules out the use of so many drugs that could potentially help with the other diseases. But we of course do not want to risk damaging the liver any more, or speed up the liver failure process.


So are you bored yet? It is so important to me to get the word out that liver disease can affect anyone. Young or old. Healthy or maybe not so healthy.

Until next time,
Jaime

Liver Disease Facts Part 2

Here is some more liver disease facts, courtesy of my friend Shawnee because she is awesome and has been putting together some great facts. Sorry for stealing your facts Shawnee, hope it is okay.

1. Liver disease often develops undetected over years, without obvious symptoms. Many people are diagnosed with liver disease after abnormalities are detected during routine blood tests. This is how Rick was diagnosed with PSC. His doctor was very concerned because his liver levels were WAY above normal.

2. Hepatitis C is the number one reason for liver transplantation in the US.

3. The liver is the only organ that can regenerate itself. I think that is actually really cool. I mean imagine such a vital organ being able to regrow and function as if nothing had ever happened to it. It is really amazing.

4. PSC (Primary Sclerosing Cholangitis) is a disease that damages and blocks bile ducts inside and outside the liver. Bile is a liquid made in the liver. Bile ducts are tubes that carry bile out of the liver to the gallbladder and small intestine. In the intestine, bile helps break down fat in food. In PSC, inflammation of the bile ducts leads to scar formation and narrowing of the ducts over time. As scarring increases, the ducts become blocked. As a result, bile builds up in the liver and damages liver cells. Eventually, scar tissue can spread throughout the liver, causing cirrhosis and liver failure. This is the liver disease that Rick has.

5. Cirrhosis is a disease of the liver in which there is a loss or a damage of liver cells, leading to the irreversible scarring of the liver. Due to the scarring of the tissues, the flow of blood through the liver is not smooth and hinders the critical functions of the organ.

The liver is certainly a complicated organ. Without a normally functioning liver the entire body can suffer. There are so many side effects and complications that come with having liver disease.

I will write about how PSC has damaged Rick's liver in an upcoming post. So stay tuned.

Until next time,
Jaime

Liver Disease Facts Part 1

I said that I would randomly post some liver disease facts during the month of October. So here is the first installment.

1. Thirty million Americans - one in every 10 - are or have been affected by a liver, biliary or gallbladder disease. One in every 10, 10%, wow! In our house the number is 1 in every 2 people if you count my gallbladder disease.

2. There are more than 100 types of liver disease, but hepatitis A, B, and C are the most common. Can you name Rick's liver disease?

3. The liver filters over a liter of blood each minute, removing toxins such as air pollutants, pesticides, cigarette smoke, environmental chemicals, alcohol, and prescription and non-prescription drugs. EVERYTHING you ingest, by consumption or inhalation, even products you put on your skin, pass through your liver. Seriously people, EVERYTHING!!

Please take care of your liver. You never know when someone might need part of it.

Until next time,
Jaime

Liver Disease Awareness Month

I betcha didn't know that October is Liver Disease Awareness Month. There isn't a lot of people with green ribbons running around trying to raise money and awareness to cure liver disease. There also doesn't seem to be a lot of people interested in liver disease.

Liver disease carries a stigma of being an "alcoholics" disease. Seriously, it does. I have had some interesting looks from people when explaining that Rick has a liver disease. Especially from people that don't really know us. The first thing people seem to think of when they hear that someone has liver disease is that they must be drinkers, or drug users.

It is sad that I have to explain that no my husband is not sick because of drinking, but that he is sick because he got a bad hand in life. Rick has liver disease and very rarely drank alcohol. We often joke now that it is too bad that we didn't drink more when we were younger.

My blog friend Shawnee has been posting some liver disease facts. I will probably "borrow" some of her facts and post them here throughout the month. I am trying to help remove the stigma from liver disease.

So stay tuned for some fun liver facts.

Until next time,
Jaime

Liver Life Walk

We had a great time at the Liver Life Walk on Sunday.  The walk went through Washington Park.  It was so pretty and peaceful.  I would have enjoyed it more if I wasn't thinking "how much further?"  Seriously I really need to work out.  But I also was thinking about what Rick goes through and what some of our other PSC friends are currently going through. 

We really did have fun.  Sam did a good job.  She made it the whole way, only complaining about being tired during the last 1/2 mile.  Rick also was able to make it, without even breaking a sweat.  I am proud of him!

So here are the pictures I took at the walk:

Our friend Carl was the walk honoree.  He spoke before the walk kicked off.

See how beautiful it was in the park for the walk.

We also got to finally meet and hang out with our PSC friends Dawn and Carl.  It was so much fun to finally meet them face to face.  I had meant to have Sam take a picture of the four of us together but I totally forgot.  I am really bummed about that.  It was really neat to meet someone that I felt like I had known for a long time.  We had a good time.  There is a certain kind of bond that wives of PSCers seem to have.  There is nobody else that knows exactly how you feel except for another wife going through the same thing.  I have really appreciated all the support that Dawn has given me.  And Carl has been a great support as well.  I don't think I would be in the same place about all of this that I am right now if I had never met Dawn.  She inspired me to meet others and I have developed a great support system online.  Thanks Dawn and Carl for inviting us to your house and for being so supportive.  

Thanks to everyone that donated to Team Rick!  We had a great time and we each earned a walk t-shirt.  Sam wore hers to school today.  She is really proud of the shirt.  And the shirts I made got a lot of looks, and even some questions as we walked around the zoo.

I will post more this week with the pictures and activities we were able to squeeze in this weekend.

Until next time,

Jaime 

Team Rick

Team Rick has surpassed our team goal of raising $450 for the Liver Life Walk.  Yippee!!  Samantha is actually $15 away from her goal of $150, but despite that we are extremely happy and grateful for all of the donations.

I have also completed our team t-shirts.  Our friend Brad, whom we have known since high school, sent me a design for the shirt.  I had to re-work it a bit, but I used the same layout.  I used a printable iron-on transfer paper to make the shirts.  They don't look quite as "professional" as I would have liked, but I still like them.

So here is Sam's Shirt:

The back is a little different for each of us.  This is the back of Sam's shirt:

Rick is number 01, I am 02, and Megan is 04.  I am making Megan a shirt too because I want all of us to have a Team Rick shirt. 

We are very excited for this weekend.  We are leaving friday morning after dropping Megan off at school.  The plan is to make a couple stops along the way, especially at Multnomah Falls.  Sam is really looking forward to that.  Saturday we are going to spend the day at Cannon Beach.  We are staying with family in Portland, that is a huge help so that we don't have to pay for a hotel.  Sunday is the big day.  I am super excited for the walk, and for being able to check out the zoo.  I hope they have monkeys!!

The three of us aren't the only ones having a special weekend.  Megan gets to take a little motorhome trip with Nana and Papa, and cousin Noah.  She is excited for the little trip.  I am glad she gets to do something special too.  I was feeling a little guilty for leaving her behind.

I won't have time to blog again until after we get back.  I am not bringing my computer (sniff, sniff).  But I will use my cellphone to update Twitter and Facebook.  So check back here for my tweets.

Until next time,
Jaime

Sad Reality

Yesterday was a sad day for the PSC community. A fellow PSCer passed away. I couldn't help but immediately burst into tears. Not just for Fred losing the fight, but also for his wife Shelley. I am sad for all the friends I have met along this journey. It hits us all hard when someone fighting this disease loses the fight. The motto is "Together in the fight, Whatever it takes" And that is so true. It is a wonderful support system that is really hurting right now.

As for me I am sad that there is a wife that has lost her husband to this vicious disease. I can't even imagine her pain. Shelley is a strong woman and there are lots of PSCers to support her through this. I just feel incredibly sad.

It is a very sad reality check for me. I really can't put into words how I am feeling about this. No I didn't "know" Fred, but that doesn't make a difference. I am just really sad.

There needs to be a cure for PSC!!! Go to PSC Partners Seeking a Cure website for more information.

Until next time,

Jaime

Liver Life Walk

Only 12 more days until the Liver Life Walk. We have not yet met our goals. I don't feel super comfortable begging for donations. So don't take this as begging. Pretty Please will you donate to our team. Remember that myself, Rick, and Samantha are registered for the walk. You can find the links to our fundraising pages on the sidebar of the blog.

Remember the reason we are doing this?? We are walking so that someday there will be a cure for liver disease. And then maybe Rick won't have a lot more days like this:

Thank you so much for supporting us. Even if you can't donate I would love for you to show your support by just commenting and letting us know that you are rooting for us. But if you can donate we really appreciate any amount. $5, $10, any amount would mean a lot to us.

Until next time,

Jaime

P.S. I am totally bummed that it is September. That means the end of summer. *tears*

Liver Life Walk

Our fundraising efforts are in full swing. We are very excited to be seeing donations coming in on our behalf. It is an amazing feeling to be actually doing something to help in the fight against liver disease.

We are so excited, in fact, that we have added another member to our team. Can you guess who is joining our team??

SAMANTHA

That is correct! Sam will be joining Rick and myself in the 5K walk in the Oregon Zoo. She is so super excited to be doing this for Daddy!! You can donate to her fundraising efforts by clicking here.

We are very proud of her enthusiasm for this event. Never mind that she gets to miss a day of school, spend a weekend alone with Mom and Dad, go to the ocean for the day, and walk around a zoo. I mean really, what kid wouldn't be excited about that?!?!?

So go check out her cute little fundraising page. And check in on Team Rick to see our fantastic donors. We want to say a big Thank You to those that have donated already. We would love to not only meet, but exceed our goals. And with just a little effort, and some generous blog readers (hint, hint), we will be able to achieve success.

Thank you!!!

Until next time,

Jaime

Liver Life Walk

Rick and I are both very excited to be joining the American Liver Foundation's Liver Life Walk in Portland Oregon. The walk is September 13th. At the moment Rick and I are the only members of Team Rick. Our goal is to each raise $150. I am the team captain and my site can be found by clicking here. Rick's site can be found by clicking here. Do you want to help us reach our goal? You can help by donating to Team Rick by sponsoring either one of us. Maybe you know someone in the area that would like to join our team. Or maybe you would like to join our team. You can join and help us raise even more money for the American Liver Foundation. We would both really appreciate any donation amount.

This is obviously a very important cause to us. This is the first time that either one of us has ever done anything like this. We are both looking forward to this walk. We will get to meet Carl and Dawn in person for the first time. Carl has been picked as the honoree for the walk. That is so awesome!

I hope that we are both able to reach our goal before the walk on September 13th. 5K is a long walk for us so hopefully we will both be able to be healthy enough to walk the whole thing. Better start working out I guess.

I will update with more information on our donation status as we start getting donations. Thank you in advance to anyone that donates. We really appreciate it!!

Until next time,
Jaime

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

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

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