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.

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.