The reality of going to Mayo has hit me. A couple days ago the itinerary for the first day arrived in the mail and looking at that made this entire thing a reality. I can't believe that my husband is sick enough to go all the way to the Mayo Clinic to get a second opinion. It is so hard to deal with sometimes. My stomach is in knots thinking about this upcoming trip. I have so much to do to get ready to leave for eight days. And on top of getting the two of us ready I have to make sure that the kids are ready and taken care of as well. The girls will be staying with my mom and Rick's mom. They will be taking turns taking care of the girls.
This whole thing is so stressful for me. I don't like not knowing what is going to happen. We know what is scheduled for the first day, but after that won't be decided until we actually meet with the doctor. It is almost intimidating to meet with such a prestigious doctor. We are going to be working on our question list for him this week.
Only 5 more days to go.
Until next time,
Jaime
Monday, June 30, 2008
Friday, June 27, 2008
Wii!!!!
I have been wanting a Wii for a long time. June is a big month for me, it is my birthday and our anniversary. So Rick decided to get me a Wii for both. I have been having lots of fun with bowling. Rick has had fun fooling around with it too. But I think the best player so far is my five year old daughter Megan. Now first of all you must know that this child loves games. She plays Gameboy for hours and her Leapster as well. I, of course, don't let her constantly play, but when she does she is obsessed. So with the Wii in the house she is going crazy wanting to play it. She created her own Mii and loves to play bowling. And to my own embarrassment she can beat me at bowling, and I am not letting her win either. The only reason I would admit to the entire blog world that a 5 year old beats me at Wii is because I am actually proud that she can beat me.
So tonight she decided that she wanted to try boxing. This was probably the funniest thing I have ever seen. She was going nuts punching and jabbing. She was playing so hard that she got a side ache and had to stop. It was so funny. She pushed pause and grabbed her side and asked why it hurt. She has never had a side ache before.
What was even funnier was when she would knock the opponent down and jump up and down saying "I killed him". She won both fights she played by winning 2 of the 3 rounds both times. We weren't helping her either. I think my 5 year old is a gamer.
So tonight she decided that she wanted to try boxing. This was probably the funniest thing I have ever seen. She was going nuts punching and jabbing. She was playing so hard that she got a side ache and had to stop. It was so funny. She pushed pause and grabbed her side and asked why it hurt. She has never had a side ache before.
What was even funnier was when she would knock the opponent down and jump up and down saying "I killed him". She won both fights she played by winning 2 of the 3 rounds both times. We weren't helping her either. I think my 5 year old is a gamer.
We had to keep pulling her away from the TV because she kept getting closer and closer. Soon she was right in front and practically hitting the screen. I am going to have to practice at night after she goes to bed so that I can beat her. She is a trash talker too. When we are bowling and she gets a strike she puts her hand on her hip, looks at me and says "beat that". Now where did she learn that?!?!?!? I think I might have my hands full.
Until next time,
Jaime
Wednesday, June 25, 2008
The healthy one
It's not easy being the healthy one. Sometimes I feel so much guilt for having a bad day when I know that Rick has bad days all the time. If I am having a back ache or headache, I always feel badly when I complain about it in front of Rick. His joints and back hurt him most of the time and unless you know about it, like I do, most people would never know. He can get terrible headaches that land him in bed or in the shower to try to get relief, and then I complain when I have a headache. How is that fair? He goes about his business and very rarely complains. If he complains I know he is really hurting.
When the kids have been crazy all day and I have about had it, I feel bad when I have to ask him to help. I don't want to have to interrupt his nap, or bother him to help me. I know that probably sounds silly, but I feel like I should be able to handle every situation because I am the healthy one. He works ridiculously hard every day, and I just have to take care of things around the house. So there is some degree of guilt on my part when I have to ask for his help. He never asks for help because he is sick, so I feel like I should be able to handle things because I am the healthy one.
I am sure that all sounds so pathetic, but those are the things that bother me.
I am not always very good at coping with Rick's diseases. It has taken me awhile to come to terms with everything, and I am still struggling with it all. At first I felt overwhelmed with what Rick would have to deal with. With the Crohn's diagnosis it was actually a relief at first because he was so sick I thought he probably had cancer. He was very sick and had lost an enormous amount of weight. I had been doing research before the diagnosis and from what I had read on the internet I figured it was cancer, but I had also seen what Crohn's disease was as well. So when the doctor said that he was really sick and that it was Crohn's disease I was actually relieved. I knew that Crohn's was treatable and liveable, granted it can also be painful and hard to control at times. But I knew that it was not something that was going to take him from me. After getting that under control life seemed to get back to normal.
About a year and a half later Rick started having severe pain in his joints and he was finding it more and more difficult to walk and get around. When he couldn't get out of the shower on his own it was time to go to the emergency room. That is where we discovered that he had an auto immune arthritis called Spondyloarthopathy. I was so worried about him, I definitely did not like seeing him in so much pain. That was hard to watch and I will probably not forget the pain on his face. How can I possibly complain about my back hurting when he has gone through something like that? Like I said, it is not easy being the healthy one.
Now the diagnosis of PSC was not something I was prepared for. Sure I knew what it was. I had done all the research on crohns and knew there was a liver disease that only like 1% of crohn's patients got. Of course I didn't look too far into it because I thought that there would be no way Rick would get that. I was crushed when the doctor thought that the high liver panel indicated that Rick had PSC. I went home and looked it up on the internet. I couldn't believe my eyes when I saw that most patients will require a liver transplant and that it was considered terminal. OMG!! How could my husband have something terminal?!?!?!
Waiting for him in the hospital waiting room while he was undergoing the procedure to determine if he did in fact have PSC was probably the hardest time of my life. I very vividly remember sitting on that chair and looking at the clock over and over again. I remember thinking that the procedure should have already ended and then still waiting another hour after that. I remember the doctor coming into the waiting room and pulling me into the recovery area to tell me that it was PSC. I remember standing by Rick who was laying in the bed sleeping away, and putting my hand on his foot while the doctor talked about the PSC. I knew too much about the disease and inside it felt like my heart was breaking. I wanted so badly to be able to cry but I wasn't going to do that in front of the doctor, or at the hospital for that matter.
I have cried many times since then. I have cried for the third child I had wanted to have. I have cried for the future that is now so uncertain. I have cried just because I don't understand why my husband. I have tried to be strong and not show how much it bothers me sometimes. And other times I just feel like my stomach is in knots. I am one of those people that like to plan ahead and know what is going to happen. I don't like not knowing what the future holds for Rick. I have a hard time coping with being the wife of a PSCer (as they are called in the PSC support group). When we were first married I never imagined that this is where we would be right now. Like I said before, I think it is hard to be the healthy one. I am the one that has to watch all this happen to my husband. I am the one that has to stick a needle in his arm. I am the one that has to wait in the waiting room dreading what the doctor is going to say.
And of course I feel guilty for feeling this way because he is the one that has to go through all of this. Rick is the one in pain. Rick is the one that has to take so many pills everyday. Rick is the one that has to endure the tests. I am just the one that has to watch.
When the kids have been crazy all day and I have about had it, I feel bad when I have to ask him to help. I don't want to have to interrupt his nap, or bother him to help me. I know that probably sounds silly, but I feel like I should be able to handle every situation because I am the healthy one. He works ridiculously hard every day, and I just have to take care of things around the house. So there is some degree of guilt on my part when I have to ask for his help. He never asks for help because he is sick, so I feel like I should be able to handle things because I am the healthy one.
I am sure that all sounds so pathetic, but those are the things that bother me.
I am not always very good at coping with Rick's diseases. It has taken me awhile to come to terms with everything, and I am still struggling with it all. At first I felt overwhelmed with what Rick would have to deal with. With the Crohn's diagnosis it was actually a relief at first because he was so sick I thought he probably had cancer. He was very sick and had lost an enormous amount of weight. I had been doing research before the diagnosis and from what I had read on the internet I figured it was cancer, but I had also seen what Crohn's disease was as well. So when the doctor said that he was really sick and that it was Crohn's disease I was actually relieved. I knew that Crohn's was treatable and liveable, granted it can also be painful and hard to control at times. But I knew that it was not something that was going to take him from me. After getting that under control life seemed to get back to normal.
About a year and a half later Rick started having severe pain in his joints and he was finding it more and more difficult to walk and get around. When he couldn't get out of the shower on his own it was time to go to the emergency room. That is where we discovered that he had an auto immune arthritis called Spondyloarthopathy. I was so worried about him, I definitely did not like seeing him in so much pain. That was hard to watch and I will probably not forget the pain on his face. How can I possibly complain about my back hurting when he has gone through something like that? Like I said, it is not easy being the healthy one.
Now the diagnosis of PSC was not something I was prepared for. Sure I knew what it was. I had done all the research on crohns and knew there was a liver disease that only like 1% of crohn's patients got. Of course I didn't look too far into it because I thought that there would be no way Rick would get that. I was crushed when the doctor thought that the high liver panel indicated that Rick had PSC. I went home and looked it up on the internet. I couldn't believe my eyes when I saw that most patients will require a liver transplant and that it was considered terminal. OMG!! How could my husband have something terminal?!?!?!
Waiting for him in the hospital waiting room while he was undergoing the procedure to determine if he did in fact have PSC was probably the hardest time of my life. I very vividly remember sitting on that chair and looking at the clock over and over again. I remember thinking that the procedure should have already ended and then still waiting another hour after that. I remember the doctor coming into the waiting room and pulling me into the recovery area to tell me that it was PSC. I remember standing by Rick who was laying in the bed sleeping away, and putting my hand on his foot while the doctor talked about the PSC. I knew too much about the disease and inside it felt like my heart was breaking. I wanted so badly to be able to cry but I wasn't going to do that in front of the doctor, or at the hospital for that matter.
I have cried many times since then. I have cried for the third child I had wanted to have. I have cried for the future that is now so uncertain. I have cried just because I don't understand why my husband. I have tried to be strong and not show how much it bothers me sometimes. And other times I just feel like my stomach is in knots. I am one of those people that like to plan ahead and know what is going to happen. I don't like not knowing what the future holds for Rick. I have a hard time coping with being the wife of a PSCer (as they are called in the PSC support group). When we were first married I never imagined that this is where we would be right now. Like I said before, I think it is hard to be the healthy one. I am the one that has to watch all this happen to my husband. I am the one that has to stick a needle in his arm. I am the one that has to wait in the waiting room dreading what the doctor is going to say.
And of course I feel guilty for feeling this way because he is the one that has to go through all of this. Rick is the one in pain. Rick is the one that has to take so many pills everyday. Rick is the one that has to endure the tests. I am just the one that has to watch.
Labels:
Coping,
Crohn's Disease,
Health,
Jaime,
PSC,
Spondyloarthropathy
Tuesday, June 24, 2008
Pills, pills, more pills, and a needle
When I put together Rick's pills for the week I am amazed at the number of pills he has to take per day. Most people are blown away when they see his gigantic pill box full of his pills for the week.
When Rick first started taking his pills he would take only one or two at a time. So it would take a while to take a handful of pills. Nowadays he pops the entire handful in his mouth at once. I used to laugh at him when he would take his time to take one at a time. Now I call him my rockstar.Currently he is taking 26 pills a day. Sometimes it is more depending on if he needs an antibiotic or steroids. He has to take calcium and vitamin supplements because the PSC and Crohns make it harder to absorb all the daily nutrition.
And then there is the weekly shot. Now this is my responsibility once a week. I have never been very good with needles and other "medical" things. But with Rick it doesn't bother me at all. I was taught in less than five minutes how to administer his weekly injection. Don't people go to school to learn how to do this? I mean really, shouldn't I have had a little more training before being expected to shove a needle into my husband's arm? I have been doing this for almost two years now and I still get nervous about hurting him. Rick has told me that getting this shot is very painful. Not from the needle but from the medicine. It apparently burns really bad, so I have to go very slowly so that it isn't as painful. Rick only wants me administering his shot because I know how slow to go. When he had his very first injection the person doing it did it very fast and he about came out of his skin. So ever since then he won't let anyone else do it. I guess he really does need me.
So until next time,
Jaime
Labels:
Crohn's Disease,
Health,
Medicine,
PSC,
Rick,
Spondyloarthropathy
Monday, June 23, 2008
^Angel Amanda^
Today would have been my cousin Amanda's 20th Birthday. Amanda was an amazing and inspiring person. She had a passion for helping other's and absolutely adored her little cousins. She loved music and played the flute beautifully. Amanda was a fighter and will forever be my hero.My sweet cousin passed away on December 30, 2006. Amanda was diagnosed with AML (leukemia) in January 2006. She fought so hard and even had a bone marrow transplant. Unfortunately the leukemia was too strong and almost 100 days after transplant the leukemia returned. With no other options left Amanda came home and enjoyed every minute left with family and friends. I have never known someone with so much courage. I will forever miss Amanda.
The experience of watching Amanda fight this "beast" made an impact on me. I knew about pediatric cancer before but watching someone so close to me battle this disease made me more aware of how badly there needs to be more done to fight cancer. Of all the cancer research funding only 1% goes to pediatric cancers. Right now Amanda's Mom Connie is in Washington D.C. to show support and the need for more money for pediatric cancer research. The Conquer Childhood Cancer Act was voted on and passed but still has some hurdles to make before it is put into action. Connie and other parents are there from all over the country to share their stories and the stories of other families to show how important it is to receive more funding. I am so proud of Connie to have the strength to go across the country and honor Amanda in this way.
Amanda needed a bone marrow transplant to try to cure the leukemia. A stranger that was on the bone marrow registry was contacted and made the decision to be the donor for Amanda. This person was unselfish in their decision to help save a life. After thinking about it I decided to join the bone marrow registry in memory of Amanda. It was simple to join. All it took was four simple cheek swabs with a q-tip and a medical questionnaire. There is a 1 in 200 chance of being a potential match for someone. There is a chance there will be several potential matches for a recipient, or there is the chance of being the only possible match. I felt compelled to join the registry because what if I am the one person that could help save someone else's life. I want to do this so much. I truly hope and pray that someday I get that call. It is true that there will be some inconvenience and possibly pain involved, but I feel it would be totally worth it. I want to save a life in memory of Amanda.
If you are interested or just want more information about being a bone marrow donor you can go to http://www.marrow.org/. If you would like to check out a website with links to many other children that are currently fighting cancer or have lost their battle you can go to http://www.asherandjacobsfriends.com/. Amanda had a caringbridge site that was used during her fight. You can visit her site at http://www.caringbridge.com/visit/amandabunch.
Happy 20th Birthday Amanda! We all miss you and love you so much!
Until next time,
Jaime
Labels:
childhood cancer,
Family
Sunday, June 22, 2008
Happy Anniversary!
Rick you are the best husband ever! I am not making this one sappy because I already did that on Father's day. Today I want you to know how much fun it is to be married to you. We totally get each other. I get your jokes and I pretty much know what your going to say before you say it. I have developed your sense of humor over the years, although that may not exactly be a good thing. But it does make life funnier sometimes. I can't believe we have been married for 11 years. Time flies when your having fun right?!?!
I like this picture of us taken by Samantha. This is just an example of how we have grown together. Totally embarassing though, right?
I love you Babe!! Happy Anniversary!
Jaime
I like this picture of us taken by Samantha. This is just an example of how we have grown together. Totally embarassing though, right?
I love you Babe!! Happy Anniversary!Jaime
Labels:
Us
Friday, June 20, 2008
Picture Day
I had to post Megan's pictures she had taken today. She is so stinkin' cute!! She was so good at smiling today. Usually when we try to take pictures of her at home she bites her lower lip or looks away from the camera. I can't believe how big she is getting. Just look at my adorable five year old daughter.
It's a good thing that the pictures were taken this morning because she took a tumble tonight. We were outside playing with the neighbors dog and Megan was running around while the dog was chasing her. She was actually kinda scared of the little dog so she was laughing but running away at the same time. Well as she went running through the driveway she tripped and fell forward skinning up her knees and hands really bad and falling on her forehead leaving a big goose egg as well as a nice red road rash. She cried and cried because there was blood. I put a bandaid on her right away and as soon as she couldn't see the blood anymore she went back to playing with the dog. I am just so happy that it happened after the pictures were taken.
Megan loves dogs but she is also scared of them. She gets really excited to see dogs but boy she can sure hide quickly when they come near her. She really wants a dog, and after Samantha played so much with the neighbors dog tonight I am sure that she is going to be asking for one too. I want one of those little "designer" puppies that I can dress up and carry around everywhere with me. But oh my goodness, have you ever seen the price for one of those puppies?? I don't think that will be happening anytime soon. So for now we will just be content to play with the neighbors dog. He is pretty cute though.
I hope this post didn't totally bore you. I just had to show off my adorable Monkey Megan.
Until next time,
Jaime
It's a good thing that the pictures were taken this morning because she took a tumble tonight. We were outside playing with the neighbors dog and Megan was running around while the dog was chasing her. She was actually kinda scared of the little dog so she was laughing but running away at the same time. Well as she went running through the driveway she tripped and fell forward skinning up her knees and hands really bad and falling on her forehead leaving a big goose egg as well as a nice red road rash. She cried and cried because there was blood. I put a bandaid on her right away and as soon as she couldn't see the blood anymore she went back to playing with the dog. I am just so happy that it happened after the pictures were taken.
Megan loves dogs but she is also scared of them. She gets really excited to see dogs but boy she can sure hide quickly when they come near her. She really wants a dog, and after Samantha played so much with the neighbors dog tonight I am sure that she is going to be asking for one too. I want one of those little "designer" puppies that I can dress up and carry around everywhere with me. But oh my goodness, have you ever seen the price for one of those puppies?? I don't think that will be happening anytime soon. So for now we will just be content to play with the neighbors dog. He is pretty cute though.
I hope this post didn't totally bore you. I just had to show off my adorable Monkey Megan.
Until next time,
Jaime
Thursday, June 19, 2008
Mayo Clinic
On July 5th Rick and I will board an airplane and head to Rochester Minnesota to see Dr. Lindor at the Mayo Clinic. Why you may ask. Because we have decided that if we were going to get a second opinion we might as well get one from the best. And well the best is at Mayo. So needless to say we are getting ready for a very big adventure. Rick's PSC has been giving him some trouble lately. Not so much in the way of pain, but his eyes have turned yellow and his blood work has been not so good. He has had some test results that have contradicted themselves and we are wanting a more solid picture of what is actually happening.Like I said in a previous post, PSC affects everyone differently. Rick has been lucky because he has only had one cholangitis attack. Cholangitis is an infection in the bile ducts and causes fever, chills, nausea, and other not so cool things. However he has had jaundice lately with the yellowing of his eyes. And mood swings and feeling irritable can also be side effects of the PSC as it progresses. Lets just say that Rick has been a little moody lately. He had said that little things were really bothering him and so I put it together that it may be the PSC. We are working on putting together things to talk with Dr. Lindor about at Mayo.
We will be gone for eight days. This will be Rick's first airplane trip. And this will be the longest that I have ever been away from the girls. Rick has worked out of town for a week before but I have never been gone for that long. I know Samantha will be okay because she somewhat understands what Daddy has and why we are going. But Megan is Mommy's Girl and she doesn't want me to leave her. This is going to be hard on me too. It is going to be tough to go through so much medical testing without any other family around for support. That is actually the reason I started this blog. I thought that if I got it up and going before we left that while we were gone our family and friends could support us through this blog. I will be updating constantly while we are away and hoping for a little love from home to cheer us up.
So the countdown to the big adventure begins. We leave in 16 days. I have two weeks to get everything set up, washed, and packed. That should be plenty of time except that the day after we get back from Mayo we are leaving for the lake. So not only do I have to pack for Mayo, and pack the kids to stay at grandma's house, I also have to have everything ready for the lake vacation as well. Geesh...what have I gotten myself into. Oh well. The trip to Mayo will be well worth it. And we should be coming home with lots of information.
So until next time,
Jaime
Labels:
Health,
Mayo Clinic,
PSC,
Rick
Wednesday, June 18, 2008
Love Always and Forever
I wanted to explain how I got the title for my blog. When Rick and I were dating we used to write notes to each other. Remember how in high school writing notes was the thing? Now it is texting. Anyway, we were always writing notes for each other during class to give to each other in between classes. One particular teacher Mr. Vansickle, V for short, always said to us before Rick would go into his classroom "I love you honey, write me a note." I still remember that like it was yesterday. Rick had V's class and I had Mr. Richardson's class right across the hall so we would wait till the bell rang to go into class. V was always waiting in the hallway to tease us. Memories..... So anyway, after a while we starting signing the notes Love Always and Forever. It stuck and we have been doing it for the past 14 1/2 years.
These are two examples of our note writing days. I had to go through my box of love notes and other little thingys that I kept from high school to find these. I had a hard time finding one that Rick wrote that wasn't in pencil so that it would show up. That was really funny going through those old notes. We were always fighting about something stupid and then asking the other to "please forgive me". Reading some of those made me wonder how we ever made it out of high school. I also have a couple old pictures to share with you as well. I thought as long as I was taking a journey down memory lane I might as well post some more old pictures. I can't believe how young we look. I certainly miss being that skinny. Goodness, look what having two kids will do to a persons body, geesh!! 
Rick has been asking me if I was going to put a picture of him playing hockey on the blog so here is the first picture. And Jackie if you are reading this you were originally in this picture with us, I edited it for use with this post, but you are still in the original.
Being high school sweethearts hasn't always been easy. We have both changed a lot over the years and we have had our share of difficult moments. But to have been able to basically grow up together as a couple has been very special. I think that is what has made going through all of Rick's health issues easier to deal with together. I know how he handles things and I know how to deal with him when he isn't feeling good. I think that having Rick get sick has brought us even closer together. We have a bond now over something that most couples never have. I don't know if that makes sense, but it makes sense to me. I wish he wasn't sick, but the blessing is that it has brought us closer together. Like my Mom said to me a while back, it makes me appreciate him even more and to not take him for granted. We don't know what will happen in the future. We are just going to take each day as it comes, and each trial as it is thrown at us. We have made it together this far, we have a lot more time ahead of us.
Until next time,
Jaime
Labels:
Us
Tuesday, June 17, 2008
What is Primary Sclerosing Cholangitis?
I thought that it would be a good idea to explain what Primary Sclerosing Cholangitis is and how it affects Rick. Most of the time I will refer to it as PSC for short because it is really long, imagine the looks on people's faces when I say the whole thing. This is the definition of PSC that I copied from the American Liver Foundation website.
What is primary sclerosing cholangitis?
Primary sclerosing cholangitis (PSC) is a chronic, or long-term, disease that slowly damages the bile ducts inside and outside the liver. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the gall bladder and the small intestine, where it helps digest fats and fatty vitamins.
In patients with PSC, the bile ducts become blocked due to inflammation and scarring. This causes bile to accumulate in the liver, where it gradually damages liver cells and causes cirrhosis, or scarring of the liver. As cirrhosis progresses and the amount of scar tissue in the liver increases, the liver slowly loses its ability to function. The scar tissue may block drainage of the bile ducts leading to infection of the bile.
PSC advances very slowly. Many patients may have the disease for years before symptoms develop. Symptoms may remain at a stable level, they may come and go, or they may progress gradually. Liver failure may occur 10-15 years after diagnosis, but this may take even longer for some PSC patients. Many people with PSC will ultimately need a liver transplant, typically about 10 years after being diagnosed with the disease. PSC may also lead to bile duct cancer. Endoscopy and MRI tests may be done to monitor the disease.
What are the symptoms of PSC?
Many people with PSC do not get symptoms, especially in the early stages of the disease. When symptoms do occur the most common are fatigue, pruritus, or intense itching of the skin, and jaundice, a yellowing of the skin and eyes. These symptoms may come and go, but they may worsen over time. As the disease continues, the bile ducts may become infected, which can lead to episodes of fever, chills and abdominal pain.
What causes PSC?
The cause of this disease is not known. About 70 percent of patients are men. It may be related to bacterial or viral infections, as well as problems in the immune system. Genetic factors may also play a role. PSC is considered an uncommon disease, but recent studies suggest that it may be more common than previously thought.
How is PSC diagnosed?
Because many PSC patients have no symptoms, the disease is often discovered through abnormal results on routine liver blood tests. Formal diagnosis is usually made by cholangiography, an X-ray test involving injection of dye into the bile ducts, or by an MRI.
How is PSC treated?
There is no cure or specific treatment for PSC. The itching associated with the disease can be relieved with medication, and antibiotics are used to treat bile duct infections when they occur. Most people with PSC must take vitamin supplements. In some cases, bile duct surgery or endoscopy may be useful to temporarily improve bile flow.
When is a liver transplant necessary?
Over time, many PSC patients will continue to suffer a gradual loss of liver function. If liver failure becomes severe, a liver transplant may be necessary. The outcome for patients with PSC who have undergone transplantation is excellent. The survival rate for two or more years is about 80 percent, with a good quality of life after recovery
Who is at risk for PSC?
PSC is more common in men than women. It usually affects people between the ages of 30 and 60. As many as 75 percent of patients with PSC also have inflammatory bowel diseases, usually ulcerative colitis.
What is being done to find a cure for PSC?
PSC has been known for 100 years, but now doctors are able to diagnose it very early. This means that treatment can begin before the liver is severely damaged. Scientists are continuing to study the disease to find the cause and understand its development.
In addition, drug therapy trials, involving a large number of patients around the world, are exploring the potential use of several additional medications to lessen the symptoms and control liver damage.
We were very worried after Rick got the PSC diagnosis. I googled it and what I found was that it is terminal and he would need a liver transplant. I have found others that have PSC and some of them were transplanted very early on in their disease and others have had it for several years. This disease is different for every person. Rick was "officially" diagnosed with it two years ago, but we believe he has had it since he was diagnosed with Crohn's disease four years ago. He has just recently begun showing the signs of being jaundiced. The whites of his eyes are yellow and his bilirubin is elevated. The thing about having a disease like this is that people that don't know he is sick would never really know by just glancing at him. And sometimes the people that do know don't realize how sick he really is because he continues to work and go about daily activities as if nothing is wrong. He has a great outlook for someone with his health.
If anyone has any questions just leave a comment under this post and I will try to answer them. I will make anonymous comments available for those that do not want to set up an account. But please if using anonymous please be sure to sign your name so I know who you are. Thanks for reading and for the support.
Jaime
What is primary sclerosing cholangitis?
Primary sclerosing cholangitis (PSC) is a chronic, or long-term, disease that slowly damages the bile ducts inside and outside the liver. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the gall bladder and the small intestine, where it helps digest fats and fatty vitamins.
In patients with PSC, the bile ducts become blocked due to inflammation and scarring. This causes bile to accumulate in the liver, where it gradually damages liver cells and causes cirrhosis, or scarring of the liver. As cirrhosis progresses and the amount of scar tissue in the liver increases, the liver slowly loses its ability to function. The scar tissue may block drainage of the bile ducts leading to infection of the bile.
PSC advances very slowly. Many patients may have the disease for years before symptoms develop. Symptoms may remain at a stable level, they may come and go, or they may progress gradually. Liver failure may occur 10-15 years after diagnosis, but this may take even longer for some PSC patients. Many people with PSC will ultimately need a liver transplant, typically about 10 years after being diagnosed with the disease. PSC may also lead to bile duct cancer. Endoscopy and MRI tests may be done to monitor the disease.
What are the symptoms of PSC?
Many people with PSC do not get symptoms, especially in the early stages of the disease. When symptoms do occur the most common are fatigue, pruritus, or intense itching of the skin, and jaundice, a yellowing of the skin and eyes. These symptoms may come and go, but they may worsen over time. As the disease continues, the bile ducts may become infected, which can lead to episodes of fever, chills and abdominal pain.
What causes PSC?
The cause of this disease is not known. About 70 percent of patients are men. It may be related to bacterial or viral infections, as well as problems in the immune system. Genetic factors may also play a role. PSC is considered an uncommon disease, but recent studies suggest that it may be more common than previously thought.
How is PSC diagnosed?
Because many PSC patients have no symptoms, the disease is often discovered through abnormal results on routine liver blood tests. Formal diagnosis is usually made by cholangiography, an X-ray test involving injection of dye into the bile ducts, or by an MRI.
How is PSC treated?
There is no cure or specific treatment for PSC. The itching associated with the disease can be relieved with medication, and antibiotics are used to treat bile duct infections when they occur. Most people with PSC must take vitamin supplements. In some cases, bile duct surgery or endoscopy may be useful to temporarily improve bile flow.
When is a liver transplant necessary?
Over time, many PSC patients will continue to suffer a gradual loss of liver function. If liver failure becomes severe, a liver transplant may be necessary. The outcome for patients with PSC who have undergone transplantation is excellent. The survival rate for two or more years is about 80 percent, with a good quality of life after recovery
Who is at risk for PSC?
PSC is more common in men than women. It usually affects people between the ages of 30 and 60. As many as 75 percent of patients with PSC also have inflammatory bowel diseases, usually ulcerative colitis.
What is being done to find a cure for PSC?
PSC has been known for 100 years, but now doctors are able to diagnose it very early. This means that treatment can begin before the liver is severely damaged. Scientists are continuing to study the disease to find the cause and understand its development.
In addition, drug therapy trials, involving a large number of patients around the world, are exploring the potential use of several additional medications to lessen the symptoms and control liver damage.
We were very worried after Rick got the PSC diagnosis. I googled it and what I found was that it is terminal and he would need a liver transplant. I have found others that have PSC and some of them were transplanted very early on in their disease and others have had it for several years. This disease is different for every person. Rick was "officially" diagnosed with it two years ago, but we believe he has had it since he was diagnosed with Crohn's disease four years ago. He has just recently begun showing the signs of being jaundiced. The whites of his eyes are yellow and his bilirubin is elevated. The thing about having a disease like this is that people that don't know he is sick would never really know by just glancing at him. And sometimes the people that do know don't realize how sick he really is because he continues to work and go about daily activities as if nothing is wrong. He has a great outlook for someone with his health.
If anyone has any questions just leave a comment under this post and I will try to answer them. I will make anonymous comments available for those that do not want to set up an account. But please if using anonymous please be sure to sign your name so I know who you are. Thanks for reading and for the support.
Jaime
Sunday, June 15, 2008
Happy Father's Day
Happy Father's Day Rick! You are such a wonderful husband and a great dad! I know that you have a lot to deal with and I want you to know that I appreciate everything that you do for our family. You have sacrificed family time to work extra hard to support me and our girls. Samantha and Megan are lucky to have you as their daddy. They have so much fun playing tetherball and soccer with you. I know you have days where you don't feel good, yet you still get up and go to work everyday. You amaze me with your strength and courage to go on with all that life has thrown at you. I just want you to know how very much I love you!! I am so extremely lucky to have you for my husband.
Love Always and Forever,
Jaime
Love Always and Forever,
Jaime
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Family
Friday, June 13, 2008
High School Sweethearts
I thought that the best way to start my blog was to start at the beginning of our relationship. Rick and I are high school sweethearts. We met in band class and began dating on January 22, 1994. We have celebrated that anniversary every year since then. Here is a picture of us before my Senior Prom in May 1995.
After almost three years of dating we decided to get married. We were married on June 22, 1997. We had a beautiful wedding at the historic Davenport Hotel. Here is a picture of us right after being declared Husband and Wife.
We were young when we got married. I was only 20 years old and Rick was 21. We had a good time being a young married couple. After a couple years of being married we decided we were ready to start a family. Trying to get pregnant turned out to be no easy task. It took a year to get pregnant for the first time. It turned out to be well worth the wait. Samantha entered this world on May 10, 2000 weighing a small 6 pounds 1 ounce. We were so extremely happy to be parents. Here is a picture of all three of us just a couple hours after Samantha was born.
We were young when we got married. I was only 20 years old and Rick was 21. We had a good time being a young married couple. After a couple years of being married we decided we were ready to start a family. Trying to get pregnant turned out to be no easy task. It took a year to get pregnant for the first time. It turned out to be well worth the wait. Samantha entered this world on May 10, 2000 weighing a small 6 pounds 1 ounce. We were so extremely happy to be parents. Here is a picture of all three of us just a couple hours after Samantha was born.
Three years one month and one day later we welcomed our second daughter Megan into our family. Megan decided that she was in a hurry to join our family arriving 3 weeks early and weighing a tiny 5 pounds 5 ounces. She came out SCREAMING and the nurse couldn't believe that such a tiny thing made so much noise. Samantha was so excited to be a big sister. Here is a picture of the four of us the day after Megan was born.
Looking at these pictures reminds me how fast life changes. It is hard to believe that Samantha is now 8 years old and entering 3rd grade in the fall. And Megan is 5 years old and will be starting kindergarten in the fall. Where did the time go? Here is a current picture of the four of us.
This blog is going to cover lots of aspects of our lives. It will focus on the girls somedays and focus on Rick's health on other days. I hope that you all will follow along with our story and leave us encouraging comments.
Jaime
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