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.

A Good Nurse is Worth....

A good nurse is worth so much. He or she can be an encourager, supporter,or sympathizer. They can prepare you for tests, listen to you complain, laugh at your tired old stories and share stories with you.

My stay at Holland Hospital has been as good as a stay in a Hospital can be. And I think it's been because the nurses have been great. Yesterday they pulled my infected line, left me alone as much as possible so I could sleep and over all helped me navigate a hospital that I don't know too well from a patient point of view.

I'm hoping to go home tomorrow with oral antibiotics. We will see though if they will let me.

Thanks for your support.

Thanksgiving

Last week was Thanksgiving. It's my favorite Holiday - bar none. As Americans we are so wealthy in comparison to other parts of the world that we really need to give thanks for all we have. Our health care is better. Our environment is better. We have sewer and/or septic systems. We have a food system that works. It is really amazing.

Yet in the midst of this wealth we know that more children in our country are poor. There are challenges with homelessness (see 60 Minutes from 11/27) and foreclosures. People are un- or under employed. It is tough out there.

In my personal life I've been getting healthier each day. My weight is improving. I feel like my hydration is getting better. I have a lot to be thankful for.

Then last night - bam! I had a fever of 103, chills, short breaths and a racing heart. I ended up coming to the Hospital and admitted to ICU/Telometry. It looks like I have an infected hickman line and some sepsis. It is really frustrating. But for some reason, I'm still thankful. I was able to eat for Thanksgiving while two years ago I couldn't. I haven't had to have a transplant. My children are doing fairly well. My wife and I have jobs when many don't.

I think if Americans could generate an attitude of Thanksgiving 365 days a year rather than just one, we would be a lot happier even in the midst of terrible situations.

Hickman Lines

This week has been a headache. On Monday night/Tuesday morning around 2:30 a.m. somehow my Hickman line came out. So I had to go to the ER and get a chest x-ray to make sure it came all the way out and there wasn't any damage. Everything was okay, but this unfortunate situation meant that I needed to contact my physicians in Chicago to see what they wanted to do about reinserting a line.

So on Wednesday, I headed to Chicago and saw Drs. Hanauer and Semrad. It was their thought that I'm not ready to be done with TPN, but more importantly saline if I continue to feel dehydrated. As Dr. Semrad desribed it, its better to make sure I don't get run down before we do anything. We want to keep moving forward rather than going backward at all. In the end I agreed.

Unfortunately, they could not insert it in Chicago on Wednesday or Thursday a.m. So, I decided to see whether they could insert it in Michigan. After plenty of checking, they determined they could insert it todayin the early afternoon. So I missed my disability infused part-time day of work for a second day and Friday is Veteran's Day. That means a really long weekend, something I wasn't really looking for.

One thing I did learn about in Chicago is a new drug that builds tissue in the small bowel. The goal is to increase the asorbtion amount by increasing the density of the small bowel. We may try that to see if I can become less dependent on saline fluids.

Enjoy your weekend.

Chicago Appointment

I've been a bit delinquent in updating the blog since I saw my Chicago physicians on Wednesday.....sorry.

Wednesday was fun. Imagine looking like a tired, worn shirt. Then after three months coming out of a cleaners being crisply ironed with starch. In a small way, that's kind of what Wednesday was like. When I last saw my Chicago docs, I was weak, frustrated and exhausted. Last week when I saw them, I had a bit of energy and some optimism. They were happy to see that and complimented me on how good I looked. It was nice to hear.

On Thrusday, I started to work again. I went into the office and saw my colleagues. It felt really good. I'm committed to going back to work in a way that builds my strength over time. I recognize that my health needs to be protected. I have no room for error or I'm going to be back in the same spot I was in August looking at the need for a transplant. While it's not as scary as it was before, it doesn't mean that it's something to desire.

Many of you are wondering when I am going to post the promised faith post. No worries, I'm working on it. Give me some time :)

Enjoy your week.

The Pittsburgh Checkup - It's a Small World

Yesterday was an overall good day. My blood work was okay, Dr. Kareem looked at my stoma and found it to be healing satisfactorily, and they decided I didn't need to come back for a check up until early December. All of that as uplifting.

More uplifting though was meeting a transplant recipient - Lucy - who was diagnosed with Crohn's disease as a child, had multiple surgeries (over 30), and lived a life similar to Amy and me with multiple children and a desire to experience different things. And about seven months ago she received her transplant, and looked absolutely incredible.

During our conversation, we learned a great deal about the transplant process, her experience with rejection issues and how they were treated, and the impacts the transplant process had on her as well as her family. We also learned that she had been a patient of Dr. Hanauer's at UChicago before moving to the east coast as an adult.

She also talked about working with 'Angel Flights' regarding arranging flights from her home to UPMC so she did not have to wait in Pittsburgh for the transplant. On Friday night, Amy and I attended the Wings of Hope 20th Anniversary Celebration where we learned more about their mission. On the way home last night, we decided we need to check into our eligibility so that if I need to have a transplant at some point, I don't need to move to Pittsburgh to wait it out.

Two other funny small things happened while we were waiting yesterday. The first was a tranplant recipient who volunteers at the clinic talking to patients struck up a conversation with Amy and me. When he found out we live in the Grand Rapids area, he got really excited because he is a participant in the Transplant Games which are coming to GR in 2012. When I shared that I helped create the West Michigan Sports Commission which is hosting the games, he got even more excited.

The second funny thing that happened was we met a couple from West Michigan sitting in the waiting room. She had received a transplant over five years ago and is doing pretty good.

All in all, the entire visit confirmed that we are in the right place for now; and no matter what happens there is hope for the future.

On to Chicago tonight for an appointment tomorrow, then back to work part-time. That's a story for another day......but sufficed to say, I need to relearn how to work. More later.....