Thanksgiving 2012

I've said it before, and I will say it again.....Thanksgiving is my favorite holiday. It is all the good stuff of Christmas - food, family, time off work - without the stress of giving gifts. Plus, Thanksgiving usually has good football to boot, while Christmas has movies or basketball....I guess I would prefer some good college football. Okay, so what have I learned since Thanksgiving 2011. A couple of things have made an impression of late related to gratitude. First, this past Sunday at church we were challenged to identify 100 things we are thankful for. So on the drive to my parents for Thanksgiving dinner, Amy and I led a conversation with the children about 100 things we are thankful for as a family. It was an interesting list. I would have to say about 60% - 70% were about people, health, and experiences. Of course, the remainder were things - houses, jobs, toys, cars, etc. What struck me though was that our children listed family, neighbors, and teachers first. That made my heart smile because we live in a society that is about things. And I know my children love their things because I hear about their Christmas present wants all the time. But when we sat down and talked as a family, it was the people and relationships that bubbled up first. I think there is a lesson in that for all of us. The second lesson I had was similar to the first, but slightly different. I was able to attend church on Thanksgiving morning by myself. (G was sick, Amy was with her, and E protested because he wanted to watch the Macy's parade....he won.) There was the traditional Thanksgiving music, a time of where the audience was able to share things they were thankful for (try that with 1500 people sometime - exhausting), and a message. Within the message was a thought, 'What would you do if you woke up in the morning withOUT things that you forgot to express thanks for the night before?' Well that obviously makes one think about their attitude, and gratitude for the amazing blessings we have. The people in our lives, health, spouse and children, neighors, friends (heck all relationships), jobs (even when they are stressful or frustrating), toys, games, cars, house, healthcare options, newspapers (I love newspapers!), religious freedoms, country we live in, etc. The list is longer than 100. I continue to live in a space that has its frustrations related to many things. But at the end of the day, I have a lot more things to be thankful for than one can imagine. And I choose to remember and focus on that versus the frustrations.

One Year Later

It has been some time since I posted a public update. But that doesn't mean I haven't been thinking about how my disease affects my life. A couple of recent thoughts... It has been one year since I had my surgery at UPMC. I went into the operating room expecting that I would have zero intestine left, and that I would be TPN dependent until I received a transplant. When I emerged I was told I had 100 cm left and one last chance to live with my gut before needing a transplant. A blessing, but change of plans. I went from living with the unexpected and unknown to battling one more time with my fragile body. Since my spring time flare up, I have been doing really well. Between Remicaide and prednisone, my health has steadily improved. I've gained weight and strength, am eating to a point where I no longer need TPN and only saline at night. I haven't had a line infection. I've been able to play with the kids this summer. We bought good bikes, kayaked in northern Michigan, went to Florida for work and play, enjoyed Lake Michigan, and had a lot of fun. Tomorrow the kids go back to school, and Amy starts teaching again. I continue to work and will need to make sure that I don't over do it. We are throwing the kitchen sink at the Crohns with the prednisone and Remicaide. If we go backwards, I'm running out of options and I would prefer not to head back to UPMC for other than a check up. So the State of me one year later is I sure am thankful. Wonderful wife, wonderful children, wonderful boss and employer, meaningful work, it's a good life. It makes one realize that we need to take advantage of every day we have been given.

Past Few Weeks....

The past few weeks have been busy! The end of school always causes a rush of activity in the life of a teacher's family. Report cards need to be written. Teachers get reassigned to new buildings. While others retire. There are graduation parties for former students. And when your children are younger, there are plenty of spring/summer activities. Swimming starts. Soccer finishes. Tball gets going. Summer camps. VBS. Late nights because of the longer sunlight. All good things, but busy. Same for my work. When you have been in and out like I have, there comes a point when things climax into NOW. Not next week, not in a month, but NOW. And that's okay. Well, it has been NOW at work. Home life has been busy with the end of school. And I am so glad I am feeling good! I've been able to keep up at home and work. I've been able to watch the NBA games and still have energy in the afternoon. I've gained weight. I have nothing to complain about, and only praises to give. My next trip to the doctors is on Monday, July 2 so until then I will keep keepin on, and smile. The sun is out. I can eat this summer. School is done for a few months. Summer is upon us.

Hiccup Update

Well after my little hiccup with the blood clots on Friday, it took a while to figure out what was going to occur. After advocating for myself, I was able to leave the hospital on Friday with just a periferal (sp?) IV line to run the antibiotics over the weekend. Then, I returned to UChicago yesteray for a new Central Line (Hickman), and came back home. Today I went to work and it was like - 'Ahh, that feels better.' Next week I head back to UChicago to see the team as a follow up from the last month. More to come next week :)

Hiccup

So I have a hiccup! Blood clots in both my upper arms. So now we don't know if I can get a new mid-line PICC in or not today. Which of course complicates whether I can go home today. Here is to positive thinking, and getting the service to put a line in. More to come....

Funny Week

It sure has been a 'funny' week. After getting discharged from the hospital on Monday, May 7 I stayed home to get stronger, and then started to do some work from home, and was ready to come back to work today (5/17). Unfortunately, on Tuesday, I received a call from the UChicago team informing me my blood work was problematic. High white cells and billyrubin. So we redid the blood work on Tuesday and I was scheduled for treatment and clinic on Wednesday at UChicago. On my way to UChicago I got good news saying my blood work was better. Great! We will see you soon. An hour later....got a problem, the blood culture came back positive and we need to admit you to the hospital for antibiotics and to pull the line! Come on.....really? Well that turned into we can't find you a room, so go to ER to start treatment. ER was backed up all day because of the room shortage so they couldn't see me until 8 pm. We started antibiotics then, but I didn't get into a room until 4:30 a.m. today. (Who is getting discharged at midnight so a room opens up? Strange.) Anyway, I feel fine. No pain. Just a blood infection. Should be headed home and then back to work on Monday. I'm ready for some normal. It's been a long April and early May.

Day by Day

What a difference each day makes. I can't believe how much better I feel this week in comparison to last week. The swelling is gone in my hands and feet. I'm hungry all the time and don't seem to have any blockage issues after I eat. My energy has increased significantly. And my allergies don't seem to be causing as many problems in my head. In short, I feel alive. Don't get me wrong, there are still issues. My joints still hurt a bit. My stool is not what anyone would consider normal. I have to take a lot of medicine. And I sleep more than most. But in comparison to last week - Wow! The past month I have had a few 'aha moments.' Maybe I've inferenced them in my posts before, but I guess they are becoming stronger beliefs - so if there is duplication here, forgive me. The first aha may seem ridiculous to some, but Amy and I call it the 'Good Will Hunting Learning.' Remember when Robin Williams character tells Will Hunting that the abuse he received early in his life was 'not his fault.' Hunting says....'I know, I know.' Williams character comes back and says....'It's not your fault.' Again, Hunting says 'I know, I know.' And Williams character comes back again and says.....'It's not your fault.' Ultimately, Hunting and Williams character hug each other tight and share a good cry. Well, for years and years I've been asking the question 'Why do I have Crohn's disease? What have I done to deserve this? What is God trying to teach me through this?' Ultimately there are no easy answers to these questions. And it can drive your mind crazy, and you reach for answers. Well in the hospital last week when my body was attacking itself, I was sharing with one of my physicians all the hard work I've been doing to take care of myself. Working less, eating carefully, resting more, etc. I said I don't know what else I can do or what I did wrong. He looked at me with his kind eyes and said, 'I hope you know that this is not your fault. You didn't do anything wrong. Your body is doing this, but you didn't do anything to cause it.' Aha - Good Will Hunting. I can give myself a break because he's right. Sometimes you just need to hear it from an expert to believe it. The second aha revolves around process. I had two discoveries related to this in the past two week. Even though I didn't feel well on my birthday (4/29) we went to church. And the message was about joy, and finding it. One of the points was that so often in life we think we will find joy when we reach a certain outcome or goal. But so often things don't go as we totally plan, and we never quite reach the goal. However, if we live in the moment and not always living in the future, the likiness that we find joy is higher. The other part of this was an article I read about reaching goals in competitive swimming. So often the conventional wisdom is you set a goal of 'x' time, and go for it. However, the article correctly pointed out that unless you break that down and look at the processes you utilize, and improve them, you will never reach the goal. So you make sure that your dive has this, you breath every three strokes, you have so many kicks in 25 meters, etc. And if you concentrate on the small steps, and doing those right, the ultimate goal can be achieved. For me, these two aha moments have really made me focus on daily living, being attuned to the moment and not getting ahead of myself. It makes me focus on the processes of life, and hopefully that will bring joy in the short, mid and long term.

Ahh...

Yesterday was the first day that I felt like I had a new lease on life. The acute pain from Monday was gone. The chronic pain I am used to feeling had slowed. And I could actually take a deep breath....ahhh. I was able to check email and start to catch up on all I missed. I read one of Anthony Bourdain's books on food and travel. The children arrived and we had a lot of smiles, stories and good laughs. I received a card from one of the girls I've coached over the past few years - saying she hopes I get better and that she misses me. It was a good day. This weekend the kids are going to have plenty of stories. They are off to downtown with Grandma to the Lego and American Girl store. My Aunt, Uncle and cousin are visiting from Iowa so I will get some new stories from them. Through the past few weeks, my conviction that life is good has not changed. It sure can be frustrating some times. But through these frustrating experiences we can see the beauty of the moments when lives comes together and the smiles flow.

Making Progress...

It feels like we have made progress today. : ) Overall, Matthew is feeling MUCH better, he is able to eat and he has more energy. We met with the nutrition team and it was decided to start up with tpn again (nutrition through his picc line). Tpn will help improve his overall nutritional health and help him gain weight (he has lost 20 pounds since the beginning of April...he really doesn't have 20 pounds to lose, so tpn along with eating should help him gain back the weight). The doctors are pretty sure all the swelling in Matthew's hands/feet are a result of his crohns disease. Bloodwork results are negative for infection and his body is responding well to the prednisone. The scopes showed inflamation in his intestine so they will do another scan of his belly tomorrow (we are praying everything will come back clear). The steriods along with starting a crohns medication should help him to continue to heal and improve. There are a few different biological drugs that are used for treatment of crohns disease. Because the cimzia he had been on doesn't seem to be working, the doctors are starting him on remicade (an infusion drug that they are giving him tonight). Remicade tends to show results fairly quickly (Matthew had been on remicade before and had positive results), we are hopeful he will have good results again. Thank you for your prayers!

A quick update

The good news of the day is Matthew feels better than he did yesterday (thanks to the steroids and pain meds.) The not so great news is that the scope showed a small area of active crohns in the intestine. The doctors still are not sure what is causing the swelling in his hands & wrists and will do another round of steroids tonight. We are hopeful that we will soon have some answers, although the theme seems to be about waiting....so we will try to wait patiently. Our friend Deb (who certainly knows her share of loved ones health struggles, but who handles it with such grace), emailed us today. I am closing with a quote from her, "...the road continues to turn and bend. The good news is, you still have a road!". Wise words to remember - thank you Deb. Thank you all for your prayers, love & support!

In a room...

It was a really LONG day of waiting at U of Chicago, but Matthew finally was admitted to the hospital in the early evening. The doctors are still trying to determine the cause of the current problems he is experiencing and will need to do a few more tests/procedures. After the day of sitting and waiting (which can be a bit discouraging), we were so thankful that he was put in a single room, and that he had a very kind and caring nurse. Matthew's mom is able to be with him for support as well, which is a blessing. The doctors gave him some pain medication and will be giving him a dose of steroids to help reduce the swelling and aching in his joints. He is having an x-ray of his belly tonight and tomorrow will have more cultures and some scopes. Hopefully these tests will provide the information the doctors need to proceed with a treatment. We are so thankful for the wonderful care & support from all of you....our family, friends, neighbors & work colleagues. Thank you for loving and helping our family through this journey!

Back in Chicago

This is Amy posting today : ). Matthew & I are at U of Chicago waiting in the doctor's office. The plan is to admit him to the hospital....but we are still waiting at this point. Matthew has had some health difficulties (not related to his crohn's), the past few weeks. A sinus infection....swelling in his feet and hands...fatigue... There have been doctor's visits in Holland, antibiotics, a trip to the ED at Holland Hospital and even a new Picc line put in through IV Radiology. And yet, there is still something not quite right.....so we headed to Chicago today to see Dr. Hanauer. The decision was made to admit him to the hospital and run some more tests... And so we wait... We will update more once we have some information. We are grateful for the prayers.

It has been a long time

It has been a long time since I posted anything. I am not sure why, but I think it has something to do with the hard work I've been doing.

When I say hard work, I'm not necessarily referring to my paid position, but the reflection going on in my head. It's hard for me to write when you don't feel confident on what you would state. Don't get me wrong, I've had lots of ideas that I started to turn into real thoughts, but then I would get tired and the thought would pitter out; or the weather would turn to 80 degrees and I would spend time outside; or I guess I just would slow myself down to ponder and not find the time to complete any one idea, and turn it into something I felt comfortable sharing in perpetuity.

Maybe you are wondering what is he talking about? Well, in the fall of 2011 I was challenged by the UPMC staff to 'reinvent Matthew' and I've been working on it. It's the hardest thing I've ever done because no one can say when you are successful. I can slow down, take one day at a time, smell the roses, worry about myself, pick a different saying and feel good. Or I can do some really important work, and feel good. I may only work part a day, but if its a yucky subject I can come home miserable and start to feel bad. I can find tons of enjoyment from my children at a swim meet or bball game, and they can drive me nuts later the same day.

What I'm trying to say is that I'm attempting to identify a rhythmic beat to my life that works more than one that doesn't. And that is only done by trial and error with success determined by how one (and who) evaluates your life. Each day is a new one and I'm still working to figure out they rhythm that works.

Going Home

I got the word today - I get to go home. Holland Hospital is nice, but I prefer the old house on 18th Street.

Fortunately, we were able to catch this bug before it got out of hand, but we can't figure out where it came from. The good news is I do not have an abcess per the CT Scan. But where oh where does this come? Guess it will remain a mystery for now.

Plans for the weekend are getting some rest and trying to catch up as best I can. G has a big swim meet and E has bball - so being a good dad will be a priority too. Plus, I owe Amy a lot. Good thing next week is Valentine's Day.....I'll need to make sure it is a good one.

Thanks for all of your prayers and good thoughts.

Lemons into Lemonade or the Alternative?

I received an email today from a college friend who is in the process of mourning a loss and going through the grieving process. In some ways this past year has made me realize I am in the grieving process over the loss of my intestines, the loss of control over how tired I get, the loss of control over situations like these when I get hospitalized for one week in the most inopportune time. None of those losses are fun for me, my family, my work or others.

With the help of modern medicine I feel fine right now. Antibiotics are amazing, pulling the line helped and there is always pain medicine if need be. In fact last night I stayed up way too late and watched the GOP returns from MN, MO and almost CO. The pundits were as fun as always and I even thought of a new blog I could start some day.

Obviously I would prefer that certain parts of my life were different. Who doesn't? But in the end we all have a choice to remember - We can turn lemons into lemonade or we can let lemons sour us. It's our choice, and today I'm sipping lemonade.

Again......

Somehow I eneded up in the Hospital. Holland Hospital that is. Probably have a line infection again. These things suck! The pain is excruciating and makes you so uncomfortable you just want it to end. Even morphine doesn't kill the pain totally. The pain just sits somewhere until the antibiotics kick in and the line gets pulled.

I'm doing better today, but this experience may have put me over the top. It has made me really think about whether we should move forward with a transplant. I feel in so many ways I am letting people down at work, at home, and even myself. I just can't seem to kick this, and it's messing with my head.

So as my old my friend Jim Soule used to say - What do you want? What do you want? I don't know yet. But I may be getting closer.

Pittsburgh 'Is What It Is'

People keep asking 'How was the trip to Pittsburgh?' Well that has lots of answers.

Overall the trip was good. We went out a day early so we could have fun with the kids and play. G and E had such fun this summer at a few of the Burgh's local cultural institutions, they wanted to show them to me. I have to say the Pitt Science Center is incredible. It is hands on, explains science in a way that children can understand it, and is physical. Kids get tired there....I was amazed. We also went to various local establishments and enjoyed some wonderful epicurean experiences.

One of the best times was having dinner with our friend Allyson and her husband - Kirk. We got to see where they live and just hang out. That was fun. Plus while Amy and I were meeting with the UPMC team, Allyson was able to take our children to the Children's Museum. According to the kids, it is way better than any other children's museum they have attended. It was wonderful to see their smiles when they returned from the day.

So GREAT!! is one answer. The other answer is 'Really....Come on. Are you serious?' That would be because my liver enzymes prefer to fluctuate rather than stay consistent. One week the billyrubin is 1.6; the next it is 2.3 and then back again. So what is one to do?

Well we did more fluid a few weeks ago. That worked initially, but now.....they are back up again. So the next step is to change medicine and do an MRE. That's fine. But getting it done is a pain because we have to fit it in and they couldn't do it at UPMC during a time that worked for us. So now we have to get it done here in West Michigan and then head back to UPMC for a check up, and figure out what is next.

Ah the joys of a chronic disease.

I know we will figure it out. But it sure can be a roller coaster without an ending.

To Pittsburgh We Go for a Checkup

The family is leaving for Pittsburgh on Saturday due to a scheduled checkup on Monday, January 30. I was thinking it should be fairly routine, but is anything ever routine for me?

So a couple of weeks ago I went to UChicago for a discussion about Tincture of Opium - a drug designed to slow down the digestive system. The goal would be that this would allow the food to linger longer in my small bowel and allow it to capture more of the calories from the food I am eating. I initiated this because I lost weight in mid-December after being in the hospital with the line infection.

During this visit we looked at various components of my blood work. We learned that my liver enzymes were elevated, and my magnesium and potassium were low as well. Great! Another complication.

So what to do - right? That's the question. Well I learned that my liver enzymes could be elevated for one of several reasons. It could be because I am dehydrated. It could be a result of the medicine I am taking. It could be because my Crohn's disease is becoming active again, or long term damage from my Crohn's disease.

Today I learned that it could be a result of excessive bacteria in my gut as a result of how short it is. I guess the physicians at UPMC have seen that often in their short gut patients.

So I'm not sure what next Monday will bring. Today I had my blood drawn so we will see what it says and go from there.

In the meantime, I have had two positive experiences related to my Crohns in the past few days. Over the weekend, I met a teenager who is having surgery to remove his sigmoid colon. As a result, he will have an ileostomy for some time. I was able to meet him, talk about my experience with Crohns and having an ostomy. It was good for me to realize that I have done a lot in my life, been successful at some things and can help others by sharing my story. I expect to catch up with him later this week to see how he is doing.

Then today I was reading an 'Ask the Expert' column from Mayo Clinic. It was about patients who are facing serious health situations, and what works well in creating resilience. They identified four characteristics:

1 - Committment - They have drive a focus to do something, to accomplish something, to be a legacy.

2 - Concentration - They have the gift to follow medical advice, to participate in their care, but also avoid the trap of becoming a professional patient.

3 - Connections - The ability to draw on support of friends, families and a significant other.

4 - Control - Patients are terrified of losing control when one has an advanced disease. So the ability to tackle small tasks they can control is important. It's also important to prioritize energies and focus.

Somehow I saw myself in these four characteristics which gave me hope for the future.

So we will see what happens on Monday, but whatever happens I know that I have resilience and will keep moving forward in a positive direction.

January 2012

The past month has been pretty positive with only a few setbacks. The setbacks were a brief hospital stay for a line infection and some weight loss. The weight has stabilized which is good so now I need to gain a few lbs back.

But overall I am doing better. My endurance is improving weekly. Work is going well. Family life is good. The kids enjoyed Christmas and New Year's.....and I got to work over the Holiday Break which I would not have imagined in August and September.

My next steps are to visit UChicago to discuss tincture of opium to slow my gut down, and a trip to UPMC to see Dr. Kareem and touch base on my wounds.

I appreciate all of your care and concern. I will try to post monthly to keep everyone up to date.