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.
Sunday, October 23, 2011
Tuesday, October 18, 2011
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.....
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.....
Sunday, October 16, 2011
Checkup Time in Pittsburgh & Chicago
Amy and I are getting ready to leave for Pittsburgh. Hopefully, we will be able to leave by noon.
Tomorrow I meet with Dr. Kareem and the UPMC team. It has been four weeks since I came home, and things are going fairly well. I'm not sure if I'm getting the right amount of nutrition from food because I'm still on TPN every other night. I do know that hydrating can be an issue. Learning to drink with a short bowel has been tricky and I'm not sure I've mastered that skill yet. I am getting used to oral hydration solutions that are really salty; and I'm actually liking them!
After my appointment in Pittsburgh, we'll head home and then I'm off to Chicago on Wednesday to see Drs. Hanauer and Semrod to discuss Crohn's medicine and TPN/nutrition. I'm looking forward to seeing them.
If everything goes well, I'm hoping to go back to work part-time. We shall see how it all goes. For those that are still reading, I'll fill you in to let you know how it goes.
Tomorrow I meet with Dr. Kareem and the UPMC team. It has been four weeks since I came home, and things are going fairly well. I'm not sure if I'm getting the right amount of nutrition from food because I'm still on TPN every other night. I do know that hydrating can be an issue. Learning to drink with a short bowel has been tricky and I'm not sure I've mastered that skill yet. I am getting used to oral hydration solutions that are really salty; and I'm actually liking them!
After my appointment in Pittsburgh, we'll head home and then I'm off to Chicago on Wednesday to see Drs. Hanauer and Semrod to discuss Crohn's medicine and TPN/nutrition. I'm looking forward to seeing them.
If everything goes well, I'm hoping to go back to work part-time. We shall see how it all goes. For those that are still reading, I'll fill you in to let you know how it goes.
Monday, October 3, 2011
Insurance & Other Matters
I've been home two weeks, and it has been great. Family life has a rhythem again. I am getting stronger each day. My intestines are beginning to work more effectively. I've been able to work thru my emails. And I'm starting to do some grant work from home. Plus, I've gone to some of my favorite haunts in Holland and Saugatuck for breakfast and lunch.
Another thing that is taking a significant amount of time is trying to decipher my insurance explanation of benefits (EOB) in comparison to the invoices I have received from the University of Chicago and UPMC. Please know this is not a 'bitch' session, but a reality of trying to figure out who I need to pay for services.
As an example, I have three insurance EOBs from my June hospitalization at UChicago that show a bill was submitted by UChicago and paid by insurance at 100%. Then I get a bill by UChicago that shows the bills were not paid by the insurance company, and that I owe 'X'. Huh?
So earlier this summer I called UChicago and they said they would look into it. Last week, I got a second notice that I owed 'X'. I called UChicago again. Now, they are suggesting that the insurance company hasn't paid anything for those services; so I should call my insurance company. Huh? I have an EOB.
I know I am not the only person who goes through this, and really our insurance company has been pretty good. We don't have a lot of these situations. But, the entire thing makes me think of the administrative costs we have in the USA insurance system. If we multiply the paperwork time needed to write the claim, submit the claim, review the claim, pay the claim (or not pay it), argue about the claim and then multiply that amount by salaries, profit margins, ya-da, ya-da, ya-da. And you get a lot of costs on top of the technology advances, new medicines, etc.
It all calls out for reform, which we are in the process of with the Affordable Care Act and everyone complains about it. I say like they do in the NFL pregrame shows - C'mon Man.
Something needs to be done to slow down the growth curve in health care. Part of it for me is that we need a system that puts some responsibility back on the individual. Whether it is a minimum deductible, a percentage that everyone has to pay for their benefits, a requirement to buy insurance, or a tax penalty if you don't buy insurance there needs to be a financial buy in. Our society is too unhealthy not to put some onus back on the individual. (Can we say obesity epidemic!)
And the idea that we scrap the ACA before it is tried is silly. I was at a conference this year in DC, and the presenter pulled an op-ed by the Heritage Foundation from the early 1990s about health care reform. The Heritage Foundation suggested the idea of a health care exchange. (Just so you know - that is in the ACA.) They also talked about incentives and penalties (like buying insurance or paying a tax penalty). This entire critique of the ACA as 'Obamacare' is not serving our country. It is intended to divide instead of finding common ground.
Look, I'm not naive enough to think that the Democrats didn't push through healthcare without effectively getting bipartisan support. But at this point, we need to do something. I've been in the system (a lot over the past three years) with great health insurance from two providers and sometimes I find that the health care system doesn't make sense. Let's see how the ACA plays out (assuming the Supreme Court doesn't throw it out) and continue reforming. With the Baby Boomers starting to draw on Medicare, my generation needs some help slowing the curve, or we will never be able to pay for the care of our parents.
Another thing that is taking a significant amount of time is trying to decipher my insurance explanation of benefits (EOB) in comparison to the invoices I have received from the University of Chicago and UPMC. Please know this is not a 'bitch' session, but a reality of trying to figure out who I need to pay for services.
As an example, I have three insurance EOBs from my June hospitalization at UChicago that show a bill was submitted by UChicago and paid by insurance at 100%. Then I get a bill by UChicago that shows the bills were not paid by the insurance company, and that I owe 'X'. Huh?
So earlier this summer I called UChicago and they said they would look into it. Last week, I got a second notice that I owed 'X'. I called UChicago again. Now, they are suggesting that the insurance company hasn't paid anything for those services; so I should call my insurance company. Huh? I have an EOB.
I know I am not the only person who goes through this, and really our insurance company has been pretty good. We don't have a lot of these situations. But, the entire thing makes me think of the administrative costs we have in the USA insurance system. If we multiply the paperwork time needed to write the claim, submit the claim, review the claim, pay the claim (or not pay it), argue about the claim and then multiply that amount by salaries, profit margins, ya-da, ya-da, ya-da. And you get a lot of costs on top of the technology advances, new medicines, etc.
It all calls out for reform, which we are in the process of with the Affordable Care Act and everyone complains about it. I say like they do in the NFL pregrame shows - C'mon Man.
Something needs to be done to slow down the growth curve in health care. Part of it for me is that we need a system that puts some responsibility back on the individual. Whether it is a minimum deductible, a percentage that everyone has to pay for their benefits, a requirement to buy insurance, or a tax penalty if you don't buy insurance there needs to be a financial buy in. Our society is too unhealthy not to put some onus back on the individual. (Can we say obesity epidemic!)
And the idea that we scrap the ACA before it is tried is silly. I was at a conference this year in DC, and the presenter pulled an op-ed by the Heritage Foundation from the early 1990s about health care reform. The Heritage Foundation suggested the idea of a health care exchange. (Just so you know - that is in the ACA.) They also talked about incentives and penalties (like buying insurance or paying a tax penalty). This entire critique of the ACA as 'Obamacare' is not serving our country. It is intended to divide instead of finding common ground.
Look, I'm not naive enough to think that the Democrats didn't push through healthcare without effectively getting bipartisan support. But at this point, we need to do something. I've been in the system (a lot over the past three years) with great health insurance from two providers and sometimes I find that the health care system doesn't make sense. Let's see how the ACA plays out (assuming the Supreme Court doesn't throw it out) and continue reforming. With the Baby Boomers starting to draw on Medicare, my generation needs some help slowing the curve, or we will never be able to pay for the care of our parents.
Wednesday, September 21, 2011
Pittsburgh to Holland to Pittsburgh and Back Again
Well last weekend was wonderful at home. And the drive back to Pittsburgh was pretty good on Sunday since the Lions crushed the Chiefs, and the Steelers destroyed the Seahawks. Listening to sports on the radio always makes time go faster.
On Monday we met with Dr. Kareem after a long wait. He was in the operating room in the morning, then he saw a patient or two, and went back into the OR. So about 3:00 p.m. we saw Dr. Kareem. He was very happy with my progress and he agreed to let me come back home. If all keeps going well, I will return to UPMC in four weeks for a follow up visit. In the meantime, I will follow up with Drs. Hanauer and Semrad at UChicago for my crohn's disease management and nutrition needs.
Yesterday, my dad and I drove to Chicago and dropped him off, and then I proceeded to Michigan. It felt wonderful to know I would be home for a while.
Over the next weeks or so, I hope to post some general thoughts about this entire experience. It has been a huge emotional roller coaster with highs and lows. It has also taught me a great deal about the process of a transplant as well as the insurance industry. Plus, I want to offer some thoughts on matters of faith and diversity. I have been served by wonderful people of different faiths as well as those of different cultures. Sometimes it has been easy and other times it hasn't.
Thanks for all of your support.
On Monday we met with Dr. Kareem after a long wait. He was in the operating room in the morning, then he saw a patient or two, and went back into the OR. So about 3:00 p.m. we saw Dr. Kareem. He was very happy with my progress and he agreed to let me come back home. If all keeps going well, I will return to UPMC in four weeks for a follow up visit. In the meantime, I will follow up with Drs. Hanauer and Semrad at UChicago for my crohn's disease management and nutrition needs.
Yesterday, my dad and I drove to Chicago and dropped him off, and then I proceeded to Michigan. It felt wonderful to know I would be home for a while.
Over the next weeks or so, I hope to post some general thoughts about this entire experience. It has been a huge emotional roller coaster with highs and lows. It has also taught me a great deal about the process of a transplant as well as the insurance industry. Plus, I want to offer some thoughts on matters of faith and diversity. I have been served by wonderful people of different faiths as well as those of different cultures. Sometimes it has been easy and other times it hasn't.
Thanks for all of your support.
Saturday, September 17, 2011
Weekend
September 17, 2011
On Thursday I went to the clinic to see Dr. Costa (Kareem's partner) and get blood work done. Everything was okay...my potassium was a bit too high in my blood so they adjusted my TPN...and everyone thought I looked good. So, when I asked for a weekend pass to go home, the answer was YES! That's when my dad and I broke into overdrive and packed up a few necesseties before heading home to Michigan!
We ended up getting to Holland around 8:30 p.m. on Thursday and it was wonderful to see the family. E was so excited to see me it was unbelievable. On Friday, the family went to work/school and I rested and caught up on paperwork. In the evening we went to the annual downtown Holland 'live manequin' showcase after going out to eat. It was the first time our family had a 'true' dinner together since the end of April. What a great time.
Today I was able to watch E's soccer game. (He scored two goals!) G had her 8th birthday party with friends at Paint-a-Pot. It was fun to see her smile after the party describing what they painted, and seeing her presents. Way better than trying to discern it over the phone.
Last but not least, our neighborhood had a get together for the ND/MSU game. It was fun to celebrate eating some snacks and watching a game with our neighbors who have done so much for us during the past few months. Plus, I got to play devil's advocate since they were all rooting for MSU. Go ND!
Dad and I are leaving tomorrow to head back to Pittsburgh since I have an appointment with Kareem on Monday morning. More blood work and a consult. Another 7 hrs in a car, but it was and is so worth it to see my family.
We will let you know how it goes after Monday's visit.
On Thursday I went to the clinic to see Dr. Costa (Kareem's partner) and get blood work done. Everything was okay...my potassium was a bit too high in my blood so they adjusted my TPN...and everyone thought I looked good. So, when I asked for a weekend pass to go home, the answer was YES! That's when my dad and I broke into overdrive and packed up a few necesseties before heading home to Michigan!
We ended up getting to Holland around 8:30 p.m. on Thursday and it was wonderful to see the family. E was so excited to see me it was unbelievable. On Friday, the family went to work/school and I rested and caught up on paperwork. In the evening we went to the annual downtown Holland 'live manequin' showcase after going out to eat. It was the first time our family had a 'true' dinner together since the end of April. What a great time.
Today I was able to watch E's soccer game. (He scored two goals!) G had her 8th birthday party with friends at Paint-a-Pot. It was fun to see her smile after the party describing what they painted, and seeing her presents. Way better than trying to discern it over the phone.
Last but not least, our neighborhood had a get together for the ND/MSU game. It was fun to celebrate eating some snacks and watching a game with our neighbors who have done so much for us during the past few months. Plus, I got to play devil's advocate since they were all rooting for MSU. Go ND!
Dad and I are leaving tomorrow to head back to Pittsburgh since I have an appointment with Kareem on Monday morning. More blood work and a consult. Another 7 hrs in a car, but it was and is so worth it to see my family.
We will let you know how it goes after Monday's visit.
Wednesday, September 14, 2011
Rest
Today was a day of rest. I had a brief meeting mid-morning at the hospital, then I took a nice nap. Dad and I went to a Mediterranean joint for dinner and I started reading Mitch Albom's recent book about faith. Plus, my personal tv weakness - Survivor - starts tonight. That should be fun to watch.
Tomorrow I go to the clinic in the morning for a follow up appointment. They will take blood and ask me a few questions. It should be relatively easy. After that, I need to get some information to the office.
So far, there isn't much planned for the weekend. I'm sure I will watch some football games, but if anyone has a movie suggestion I would love to hear it.
Thanks for the cards and words of encouragement.
Tomorrow I go to the clinic in the morning for a follow up appointment. They will take blood and ask me a few questions. It should be relatively easy. After that, I need to get some information to the office.
So far, there isn't much planned for the weekend. I'm sure I will watch some football games, but if anyone has a movie suggestion I would love to hear it.
Thanks for the cards and words of encouragement.
Subscribe to:
Posts (Atom)