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.
Sunday, December 4, 2011
Friday, December 2, 2011
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.
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.
Thursday, November 10, 2011
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.
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.
Sunday, October 23, 2011
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.
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.
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.
Tuesday, September 13, 2011
Clinic Day
September 13, 2011
Yesterday was a long clinic day. We needed to be there at 8:00 a.m. so they could draw my blood and do their health assessment by the nursing staff. Then it was wait, wait, wait until Dr. Kareem could see me. It was around 2:00 p.m. when I was called back to meet with Dr. Kareem and his team. He was happy with the results so far, took out a few sutures and made a few adjustments to my TPN and medicine. Then we discussed next steps and potential timelines to return home. If all continues to go well, I will see Kareem's partner - Dr. Costa - Thursday at clinic, and then see Kareem next Monday. At that point he will hopefully release me from Pittsburgh. Follow up will probably be every 2 weeks following my release.
In the meantime, Dad and I are trying to do a few things in Pittsburgh. On Saturday we went to the Pitt vs. Maine football game using free tickets given to Family House. We are keeping our fingers crossed that there will be Steeler tickets this weekend. Later today or tomorrow we are hoping to visit the Warhol Museum. Warhol is from Pittsburgh and the museum has the largest number of Warhol paintings and prints. It should be interesting.
Other than that, it is rest, walk, and read. I'm starting to sift through my email pile to figure out what is going on at work.
I appreciate all of your support for me and my family.
Yesterday was a long clinic day. We needed to be there at 8:00 a.m. so they could draw my blood and do their health assessment by the nursing staff. Then it was wait, wait, wait until Dr. Kareem could see me. It was around 2:00 p.m. when I was called back to meet with Dr. Kareem and his team. He was happy with the results so far, took out a few sutures and made a few adjustments to my TPN and medicine. Then we discussed next steps and potential timelines to return home. If all continues to go well, I will see Kareem's partner - Dr. Costa - Thursday at clinic, and then see Kareem next Monday. At that point he will hopefully release me from Pittsburgh. Follow up will probably be every 2 weeks following my release.
In the meantime, Dad and I are trying to do a few things in Pittsburgh. On Saturday we went to the Pitt vs. Maine football game using free tickets given to Family House. We are keeping our fingers crossed that there will be Steeler tickets this weekend. Later today or tomorrow we are hoping to visit the Warhol Museum. Warhol is from Pittsburgh and the museum has the largest number of Warhol paintings and prints. It should be interesting.
Other than that, it is rest, walk, and read. I'm starting to sift through my email pile to figure out what is going on at work.
I appreciate all of your support for me and my family.
Saturday, September 10, 2011
Discharge
September 10, 2011
Yesterday I was discharged from UPMC Montefiore around 5:30 p.m. What a great feeling. This whole experience has been a roller coaster and right now it's a high. I hope to keep it that way.
My dad and I ate at a Mediterranean Restaurant last night, got my meds from the local CVS and I slept for 12 hrs without anyone checking my vital signs every 4 hrs. Ahh to escape from the controlling environment of a hospital.
Speaking of a controlling environment, I had a first time hospital experience. On my floor beginning on Wednesday was a state prisoner who had surgery of some sort. I noticed by seeing him walk in shackles down the hall, with his guard and hospital technician. I said to my nurse - did I happen to see someone walking in shackles? She said yes, he was brought in from the State Penal system last night. She shared that usually the prisoners are very well behaved when they are at the hospital and this isn't an unusual experience for them.
Today I missed Ezra's first soccer game - he scored 2 goals! Amy sent me some video to watch. My dad and I received free tickets to the Pitt football game as guests of family house. We are going to check that out for an hour or so to get outside. And tomorrow the Steelers play the Ravens in a huge NFL rivalry game. I hear it will be crazy in the town, so I hope to find a bar to watch the game at for a while to see this first hand.
Monday I have an 8:00 a.m. appointment at the clinic to find out next steps. Keeping my fingers crossed that they will release me some time next week to head back to my family.
What a journey so far. Thanks for sharing in it.
Yesterday I was discharged from UPMC Montefiore around 5:30 p.m. What a great feeling. This whole experience has been a roller coaster and right now it's a high. I hope to keep it that way.
My dad and I ate at a Mediterranean Restaurant last night, got my meds from the local CVS and I slept for 12 hrs without anyone checking my vital signs every 4 hrs. Ahh to escape from the controlling environment of a hospital.
Speaking of a controlling environment, I had a first time hospital experience. On my floor beginning on Wednesday was a state prisoner who had surgery of some sort. I noticed by seeing him walk in shackles down the hall, with his guard and hospital technician. I said to my nurse - did I happen to see someone walking in shackles? She said yes, he was brought in from the State Penal system last night. She shared that usually the prisoners are very well behaved when they are at the hospital and this isn't an unusual experience for them.
Today I missed Ezra's first soccer game - he scored 2 goals! Amy sent me some video to watch. My dad and I received free tickets to the Pitt football game as guests of family house. We are going to check that out for an hour or so to get outside. And tomorrow the Steelers play the Ravens in a huge NFL rivalry game. I hear it will be crazy in the town, so I hope to find a bar to watch the game at for a while to see this first hand.
Monday I have an 8:00 a.m. appointment at the clinic to find out next steps. Keeping my fingers crossed that they will release me some time next week to head back to my family.
What a journey so far. Thanks for sharing in it.
Wednesday, September 7, 2011
Good Things - Clarification
Many of our friends have been so excited today at the prospect of me coming home. We are too, BUT there are lots of ifs and there is going to be a significant amount of follow up in Pittsburgh. We'll celebrate today, but please realize this journey is far from over.
We are not sure of the exact timeline for follow up, but as an example - this summer we had to visit Chicago on a weekly basis for six weeks after my surgical drains were installed. If I have to visit UPMC in a similar way, it's going to be a significant event in our life on a weekly basis from a time and expense point of view. Again, the exact follow up for this surgery has not been established, and we are praying for few complications so all of this will be moot.
Today I saw the UPMC IBD team. The attending physician was Dr. Baido who happened to train under Dr. Hanauer at UChicago. He gave me a smile when we discussed the small world of crohns disease treatment. We developed a treatment plan and I will start on it while here with follow up at UChicago. It was good meeting.
I also started eating today. Peanut butter sandwiches are pretty good. Slow but sure in this route.
For those that are inclined, prayers for my family would be encouraged. I miss them, and want to be there for them.
Enjoy your day.
We are not sure of the exact timeline for follow up, but as an example - this summer we had to visit Chicago on a weekly basis for six weeks after my surgical drains were installed. If I have to visit UPMC in a similar way, it's going to be a significant event in our life on a weekly basis from a time and expense point of view. Again, the exact follow up for this surgery has not been established, and we are praying for few complications so all of this will be moot.
Today I saw the UPMC IBD team. The attending physician was Dr. Baido who happened to train under Dr. Hanauer at UChicago. He gave me a smile when we discussed the small world of crohns disease treatment. We developed a treatment plan and I will start on it while here with follow up at UChicago. It was good meeting.
I also started eating today. Peanut butter sandwiches are pretty good. Slow but sure in this route.
For those that are inclined, prayers for my family would be encouraged. I miss them, and want to be there for them.
Enjoy your day.
Tuesday, September 6, 2011
Today's Good Things
Since I was having the blah's this morning, I've got to feeling a bit more even-keeled. I saw Dr. Kareem today and feels confident at this time my remaining intestine is healthy and he doesn't think I'll have anymore fistulas, so he's hoping to release me on Friday to Family House for one week and then home to Michigan. Wow! That's a turn of events. I know I've said it before, but this entire UPMC journey has been so up and down, topsie - turvie that trying to plan out a life is difficult at best. It's an important learning for me - trying to control things is impossible, influencing is, and being calm through all of it is so important because things change in a minute.
Tomorrow Dr. Hanauer's colleague Miguel Rosario will be visiting for a consult re: Crohn's disease medicines. We'll see what he has to say, and food will enter my mouth again. So I'm going to request a consult with a nutritionist as well.
One last thought - enjoy your family tonight. Give them an extra hug.
Tomorrow Dr. Hanauer's colleague Miguel Rosario will be visiting for a consult re: Crohn's disease medicines. We'll see what he has to say, and food will enter my mouth again. So I'm going to request a consult with a nutritionist as well.
One last thought - enjoy your family tonight. Give them an extra hug.
Hard Weekend
It's been a hard weekend. I am getting stronger, but I am feeling lonely, frustrated, a drift, I don't know the right words. But I know the reason it's because my wife and kids left for Michigan. I miss my family. So it's the boys - me and my dad - here in Pittsburgh hanging out. Dad has been great, but with school starting today I feel like I'm missing life back home and there is no guarantee that I'll be back soon. This whole journey is so I can live life and live it abundantly. Right now it just feels like I'm in a hospital room surviving without friends or family close by. It's really hard.
This isn't a pitty party for me though. Hospitals have a different vibe over holiday weekends. Physicians aren't around and nursing staff has more time because census is usually down. The nursing care at UPMC has been great and the support staff is much more professional than I've experienced recently. So that's been a positive in my life. Dad is staying at Family House Neville which according to reports from Amy is much nicer than Family House McKee where we were staying, so if I'm discharged to family house - that's where we are heading.
I'll try to write a bit more and let people know what is going on.
Matthew
This isn't a pitty party for me though. Hospitals have a different vibe over holiday weekends. Physicians aren't around and nursing staff has more time because census is usually down. The nursing care at UPMC has been great and the support staff is much more professional than I've experienced recently. So that's been a positive in my life. Dad is staying at Family House Neville which according to reports from Amy is much nicer than Family House McKee where we were staying, so if I'm discharged to family house - that's where we are heading.
I'll try to write a bit more and let people know what is going on.
Matthew
Friday, September 2, 2011
Recovery
Friday, September 2
After spending his first night in the ICU, Matthew moved Wednesday morning to a "regular" floor. The first few days after such a big surgery are always filled with a lot of pain, pain medicine and sleeping. Recovery never goes as quickly as you would like. Small amounts of progress, but moving in the right direction. Today Matthew was able to lose some of the tubes/connections/etc., which allowed him to go on a walk for the first time. It was the shortest walk of his life, but a walk none the less. The nurses & support staff have been helpful and last night they were totally into the Steelers football game. If any of you know Matthew well, you know that he has always been a huge Steeler fan. For him to be in the midst of such Steeler mania is a small bit of joy for someone stuck in the hospital. The kids & I will be heading back to Michigan this weekend so that we can start school on Tuesday. Matthew's dad Jim, will remain out here in Pittsburgh as his support person. Hopefully next week Matthew will feel up to writing a post himself. We appreciate all of your support.
After spending his first night in the ICU, Matthew moved Wednesday morning to a "regular" floor. The first few days after such a big surgery are always filled with a lot of pain, pain medicine and sleeping. Recovery never goes as quickly as you would like. Small amounts of progress, but moving in the right direction. Today Matthew was able to lose some of the tubes/connections/etc., which allowed him to go on a walk for the first time. It was the shortest walk of his life, but a walk none the less. The nurses & support staff have been helpful and last night they were totally into the Steelers football game. If any of you know Matthew well, you know that he has always been a huge Steeler fan. For him to be in the midst of such Steeler mania is a small bit of joy for someone stuck in the hospital. The kids & I will be heading back to Michigan this weekend so that we can start school on Tuesday. Matthew's dad Jim, will remain out here in Pittsburgh as his support person. Hopefully next week Matthew will feel up to writing a post himself. We appreciate all of your support.
Tuesday, August 30, 2011
Encouraging News
August 30, 2011
It has been a long, long day at the hospital, however, it is also a day that leaves me (Amy) with some cautious hope. Dr. Kareem was pleased with the surgery outcome and even said that there is a 50/50 chance that (for now) Matthew may not need an intestinal transplant. Surprising and amazing news that I was so grateful to hear. For those of you who want (and can handle) the "gory" details, keep reading. All others that just need to know that Matthew is okay...stop reading here. : )
Details:
The surgery was about 8 hours long; Dr. Kareem removed all the areas of fistulas, did a liver biopsy (which looks good) and then "cleaned up" Matthew's belly. Dr. Kareem shared that he was pleasantly surprised by the amount (101 centimeters) of healthy small bowel that he was able to save. With this amount of healthy intestine he thinks that there is a 50/50 chance that Matthew may NOT need an intestinal transplant (at this time). In the next 4-6 weeks it will be important to monitor Matthew's "output" as well as his weight loss/gain. Barring any complications, he should be able to eat in about a week at which point they will slowly ween his body from t.p.n. I am sure we will be learning more about how they will determine if a transplant is necessary (or not).
I shared my concerns with Dr. Kareem about Matthew's history of developing fistula's a few months after he's had a surgery. but Dr. Kareem really thinks that the fistula's will not come back and I am praying and hoping that will be case.
Matthew will be spending the night in ICU (because he was in surgery and sedated for so long they need to closely monitor him to make sure there are no complication, etc.); he should be out of ICU tomorrow. I am with him now and he is sleeping, but awakens every so often to tell me how much pain he is in.....I can only imagine. Matthew is an amazingly strong and resilient man, but being in intense pain is not a fun experience for anybody. I'm thankful for modern inventions like continuous drip, pain pumps.
I am thankful for the wonderful doctors and nurses here at UPMC, particularly for Dr. Kareem's expertise with intestinal surgries. Near the end of my conversation with Dr. Kareem I asked him if he would be stopping by Matthew's room tomorrow morning or if it would be one of his parnters. It was interesting because he shared with me that today was a religious holiday for him (Ramadan), and yesterday he was thinking that he would be taking the day off, as he is leaving for vacation tomorrow. (We even had a call from a nurse yesterday afternoon (much to our panic), wondering if we would be willing to post-pone the surgery. Matthew had shared that he was really ready for surgery, our children were coming out to Pittsburgh, that it just "worked" better for our family if the surgery could stay as scheduleld.) Obviously we had the surgery but Dr. Kareem told me that he had been praying....is it you God or him (Matthew)?, but ultimately he felt that God was telling him - Matthew. He said, "My work is an act of worship." I am so grateful that Dr. Kareem performed the surgery today and that he sees his gifts as a surgeon, his work, as an act of worshiping God.
Thank you for your continued prayers and support as we begin the recovery stage. I'm thankful for encouraging news and am cautiously optimistic.
It has been a long, long day at the hospital, however, it is also a day that leaves me (Amy) with some cautious hope. Dr. Kareem was pleased with the surgery outcome and even said that there is a 50/50 chance that (for now) Matthew may not need an intestinal transplant. Surprising and amazing news that I was so grateful to hear. For those of you who want (and can handle) the "gory" details, keep reading. All others that just need to know that Matthew is okay...stop reading here. : )
Details:
The surgery was about 8 hours long; Dr. Kareem removed all the areas of fistulas, did a liver biopsy (which looks good) and then "cleaned up" Matthew's belly. Dr. Kareem shared that he was pleasantly surprised by the amount (101 centimeters) of healthy small bowel that he was able to save. With this amount of healthy intestine he thinks that there is a 50/50 chance that Matthew may NOT need an intestinal transplant (at this time). In the next 4-6 weeks it will be important to monitor Matthew's "output" as well as his weight loss/gain. Barring any complications, he should be able to eat in about a week at which point they will slowly ween his body from t.p.n. I am sure we will be learning more about how they will determine if a transplant is necessary (or not).
I shared my concerns with Dr. Kareem about Matthew's history of developing fistula's a few months after he's had a surgery. but Dr. Kareem really thinks that the fistula's will not come back and I am praying and hoping that will be case.
Matthew will be spending the night in ICU (because he was in surgery and sedated for so long they need to closely monitor him to make sure there are no complication, etc.); he should be out of ICU tomorrow. I am with him now and he is sleeping, but awakens every so often to tell me how much pain he is in.....I can only imagine. Matthew is an amazingly strong and resilient man, but being in intense pain is not a fun experience for anybody. I'm thankful for modern inventions like continuous drip, pain pumps.
I am thankful for the wonderful doctors and nurses here at UPMC, particularly for Dr. Kareem's expertise with intestinal surgries. Near the end of my conversation with Dr. Kareem I asked him if he would be stopping by Matthew's room tomorrow morning or if it would be one of his parnters. It was interesting because he shared with me that today was a religious holiday for him (Ramadan), and yesterday he was thinking that he would be taking the day off, as he is leaving for vacation tomorrow. (We even had a call from a nurse yesterday afternoon (much to our panic), wondering if we would be willing to post-pone the surgery. Matthew had shared that he was really ready for surgery, our children were coming out to Pittsburgh, that it just "worked" better for our family if the surgery could stay as scheduleld.) Obviously we had the surgery but Dr. Kareem told me that he had been praying....is it you God or him (Matthew)?, but ultimately he felt that God was telling him - Matthew. He said, "My work is an act of worship." I am so grateful that Dr. Kareem performed the surgery today and that he sees his gifts as a surgeon, his work, as an act of worshiping God.
Thank you for your continued prayers and support as we begin the recovery stage. I'm thankful for encouraging news and am cautiously optimistic.
Monday, August 29, 2011
Tomorrow is Clean Out Surgery
August, 29, 2011
Today was venogram day and tomorrow is clean out day. Both are early morning occurrances.
Amy and I got back to Pittsburgh last night around 9:00 p.m., but the Boulevard of the Allies was closed so our newly acquired GPS had to find us a different way to the Family House. We ended up driving on a switchback up the hill and then later back down to cross a bridge which got us back on our way. Another driving experience in Pittsburgh. After finding a place to park and unloading, it was a late night.
This morning's venogram started with a hospital arrival at 6:00 a.m. and was followed by the ususal wait. I was sedated so it was not big thing. I'm sure we will find out the results later. After my venogram concluded, Amy and I explored the part of town called Shadyside. We found several little retail areas within the neighborhood. There was a cute neighborhood school we stopped into visit and found out it was a magnet school for the City. It seemed like a good place to find an apartment for the long-term. Guess this is kind of our opportunity to do big city living.
Tomorrow we need to report to surgery prep at get this - 5:00 a.m. Dr. Kareem must like early morning operating. Of course we are a bit nervous, but that is only natural. Hopefully it goes better than we could possibly imagine.
Amy may try to post something tomorrow to let people know how the surgery goes. I appreciate all of your thoughts, good wishes and most of all prayers.
Today was venogram day and tomorrow is clean out day. Both are early morning occurrances.
Amy and I got back to Pittsburgh last night around 9:00 p.m., but the Boulevard of the Allies was closed so our newly acquired GPS had to find us a different way to the Family House. We ended up driving on a switchback up the hill and then later back down to cross a bridge which got us back on our way. Another driving experience in Pittsburgh. After finding a place to park and unloading, it was a late night.
This morning's venogram started with a hospital arrival at 6:00 a.m. and was followed by the ususal wait. I was sedated so it was not big thing. I'm sure we will find out the results later. After my venogram concluded, Amy and I explored the part of town called Shadyside. We found several little retail areas within the neighborhood. There was a cute neighborhood school we stopped into visit and found out it was a magnet school for the City. It seemed like a good place to find an apartment for the long-term. Guess this is kind of our opportunity to do big city living.
Tomorrow we need to report to surgery prep at get this - 5:00 a.m. Dr. Kareem must like early morning operating. Of course we are a bit nervous, but that is only natural. Hopefully it goes better than we could possibly imagine.
Amy may try to post something tomorrow to let people know how the surgery goes. I appreciate all of your thoughts, good wishes and most of all prayers.
Saturday, August 27, 2011
Ahh - The Weekend
August 27, 2012
Weekends are great things. A time for catching up, family activities, relaxation and renewal. I'm hoping to do all four this weekend. Especially after a long day yesterday.
We got up at 5:15 a.m. for a 6:00 arrival at the hospital for an EKG. Unfortunately, the EKG was not necessary since it is part of the stress test which was scheduled for 1:00 p.m. And there were no openings prior to then - so we had to wait. I had a pre-op meeting around 10:00 a.m. and my TB test read. (I'm TB free in case you were interested.) But most of the day was reading, and hanging out in a hospital because of the mix-up. Frustrating.
Amy and I arrived in Holland about 10:00 p.m. last night. The trip took about seven hours even with some stop and go traffic in Pittsburgh. It felt so good to see our house, and the children. We had a chance to cuddle 'G' because she was still awake and 'E' was sleeping peacefully.
This morning was great. The kids loved the University of Pittsburgh t-shirts we purchased for them. (We support higher education by buying t-shirts of whatever colleges we run into - our way of brainwashing the children that they will go to college.) Everyone was happy, we were able to tell G and E about my upcoming surgery and what was happening. Right now the kids will be staying with my parents for a few days and then head to Pittsburgh for a visit through the weekend. Then Amy, and the kids will return to Holland and start school, while my dad becomes my 'caregiver.'
As for where we will stay in Pittsburgh, the plan is to stay at Family House - McKee for right now until my dad can find a corporate apartment to rent. It will cost the same as McKee and offer a lot more privacy and room for when the family comes.
In terms of next steps, on Monday I have a venogram scheduled bright and early, and a nurse will call for a surgery time on Tuesday. The surgery is expected to be long due to my stomach's terrible scar tissue. The hospitalization will be longer than the typical week following abdominal surgery according to Dr. Kareem. Assuming there are no complications, we have zero idea how long it will be between clean out surgery and transplant surgery. Insurance has to approve the transplant, I need to heal some, and a donor needs to be identified. Our guess is a minimum of two months, but who knows. This whole experience has taught me to be more patient because so much is beyond my control.
But right now, I'm enjoying Holland and the family. Ahh - the weekend.
Weekends are great things. A time for catching up, family activities, relaxation and renewal. I'm hoping to do all four this weekend. Especially after a long day yesterday.
We got up at 5:15 a.m. for a 6:00 arrival at the hospital for an EKG. Unfortunately, the EKG was not necessary since it is part of the stress test which was scheduled for 1:00 p.m. And there were no openings prior to then - so we had to wait. I had a pre-op meeting around 10:00 a.m. and my TB test read. (I'm TB free in case you were interested.) But most of the day was reading, and hanging out in a hospital because of the mix-up. Frustrating.
Amy and I arrived in Holland about 10:00 p.m. last night. The trip took about seven hours even with some stop and go traffic in Pittsburgh. It felt so good to see our house, and the children. We had a chance to cuddle 'G' because she was still awake and 'E' was sleeping peacefully.
This morning was great. The kids loved the University of Pittsburgh t-shirts we purchased for them. (We support higher education by buying t-shirts of whatever colleges we run into - our way of brainwashing the children that they will go to college.) Everyone was happy, we were able to tell G and E about my upcoming surgery and what was happening. Right now the kids will be staying with my parents for a few days and then head to Pittsburgh for a visit through the weekend. Then Amy, and the kids will return to Holland and start school, while my dad becomes my 'caregiver.'
As for where we will stay in Pittsburgh, the plan is to stay at Family House - McKee for right now until my dad can find a corporate apartment to rent. It will cost the same as McKee and offer a lot more privacy and room for when the family comes.
In terms of next steps, on Monday I have a venogram scheduled bright and early, and a nurse will call for a surgery time on Tuesday. The surgery is expected to be long due to my stomach's terrible scar tissue. The hospitalization will be longer than the typical week following abdominal surgery according to Dr. Kareem. Assuming there are no complications, we have zero idea how long it will be between clean out surgery and transplant surgery. Insurance has to approve the transplant, I need to heal some, and a donor needs to be identified. Our guess is a minimum of two months, but who knows. This whole experience has taught me to be more patient because so much is beyond my control.
But right now, I'm enjoying Holland and the family. Ahh - the weekend.
Thursday, August 25, 2011
Good Day
August 25, 2011
Today was a good day. I had an upper endoscopy, and the results were positive. Plus, I was able to meet three members of the Irritable Bowel Disease (IBD) team - Richard Duerr, Miguel Reguerio, and Marc Schwartz. Marc was my first physician at UChicago before leaving to go to UPMC. We only knew each other for five months, but he remembered me and my complicated case. Miguel and Dr. Hanauer - my gastro at UChicago - are close colleagues. And Richard Duerr was the person who started the UPMC IBD group and has done signifianct amounts of research on genetics of Crohn's Disease. All three shared that the transplant program outcomes are good, and have been improving at a quick pace over the past two years since Dr. Kareem published a significant article about the first 500 small bowel transplants conducted at UPMC. That was nice to hear.
Plus we were done around noon today which allowed Amy and I to tour Pittsburgh a little. We found an adult playground called the Strip. Antique shops, funky stores, good looking food establishments and wholesale grocery stores with live lobsters, a fish market, unique meats from around the world, and street food. From there we found the Carnegie Science Center and Children's Museum, learned that we can get a library card at the Carnegie Library while we are here. (For those that don't know, Mr. Carnegie was a philanthropist who established libraries around the country. Well this is his flagship, and it is impressive! It is beautiful and has a huge endowment, which allows its collection to be incredible.)
Tomorrow is an early morning with heart related tests all day. We are leaving to head home to Holland for a quick trip, with a return to Pittsburgh on Sunday. I need to get some different clothes for the hospital. We want to see our children. And our friend is marrying a guy from Pittsburgh in Holland this weekend. It will be good when she moves here in December.
Thanks for your words of encouragement. They are so helpful and appreciated.
Today was a good day. I had an upper endoscopy, and the results were positive. Plus, I was able to meet three members of the Irritable Bowel Disease (IBD) team - Richard Duerr, Miguel Reguerio, and Marc Schwartz. Marc was my first physician at UChicago before leaving to go to UPMC. We only knew each other for five months, but he remembered me and my complicated case. Miguel and Dr. Hanauer - my gastro at UChicago - are close colleagues. And Richard Duerr was the person who started the UPMC IBD group and has done signifianct amounts of research on genetics of Crohn's Disease. All three shared that the transplant program outcomes are good, and have been improving at a quick pace over the past two years since Dr. Kareem published a significant article about the first 500 small bowel transplants conducted at UPMC. That was nice to hear.
Plus we were done around noon today which allowed Amy and I to tour Pittsburgh a little. We found an adult playground called the Strip. Antique shops, funky stores, good looking food establishments and wholesale grocery stores with live lobsters, a fish market, unique meats from around the world, and street food. From there we found the Carnegie Science Center and Children's Museum, learned that we can get a library card at the Carnegie Library while we are here. (For those that don't know, Mr. Carnegie was a philanthropist who established libraries around the country. Well this is his flagship, and it is impressive! It is beautiful and has a huge endowment, which allows its collection to be incredible.)
Tomorrow is an early morning with heart related tests all day. We are leaving to head home to Holland for a quick trip, with a return to Pittsburgh on Sunday. I need to get some different clothes for the hospital. We want to see our children. And our friend is marrying a guy from Pittsburgh in Holland this weekend. It will be good when she moves here in December.
Thanks for your words of encouragement. They are so helpful and appreciated.
Wednesday, August 24, 2011
Long Day - Insurance and Other Matters
August 24, 2011
I think days of meetings can be more exhausting than days of tests. Today we met with the financial advisor, the social worker, the psychiatrist and Dr. Kareem with Mary. (I also got a three shots and blood drawn for an HIV test, which was kind of easy.) We learned that our health insurance is really good in what it covers for a transplant; however we also learned that the rider which covers lodging, food, travel costs, etc. has an issue related to UPMC not being in its Center of Excellence program, so we aren't eligible for it. Funny thing is there is no small bowel 'Center' so we are going to have to appeal that ruling.
We also figured out that I probably won't be home for some time.....which is really less than ideal, but what we have to do, no one said this would be easy. So trying to get the details together for the next few weeks followed by ensuring that we have a care giver and subs was an item for today. Brainstorming and starting to call/email people asking them to give up their time was overwhelming. I think we quickly came to realize we are fortunate to come up with names to ask, but humbled by the fact that we have to. We really feel blessed to be part of a great support network.
The other thing we realized is that we will probably need to do some 'fundraising' due to the insurance issue and amount of travel that's going to be involved over the next few months. And then we started trying to find a place to stay. When we started doing some math, the Family House (Ronald McDonald House for adults/families at UPMC) while nice is going to cost $1500 month with lots of rules and less privacy than we'd like. So Amy and I started researching furnished apartments and what they cost. Looks like we can do something for a similar amount.
And then there was figuring out the best way to tell the children about the need for surgery and my needing to be in Pittsburgh for a long time. Thinking about that is difficult, and tiring. And no matter how we do it - it's going to break hearts. Mine, Amy's, and the kids.
Amy shared a really good analogy today. It's like basic training in the armed forces. They break you down before building you up. Today was a break down day, with glimmers of hope when we heard from our family and friends. Your emails of support were great. We know we are loved.
I think days of meetings can be more exhausting than days of tests. Today we met with the financial advisor, the social worker, the psychiatrist and Dr. Kareem with Mary. (I also got a three shots and blood drawn for an HIV test, which was kind of easy.) We learned that our health insurance is really good in what it covers for a transplant; however we also learned that the rider which covers lodging, food, travel costs, etc. has an issue related to UPMC not being in its Center of Excellence program, so we aren't eligible for it. Funny thing is there is no small bowel 'Center' so we are going to have to appeal that ruling.
We also figured out that I probably won't be home for some time.....which is really less than ideal, but what we have to do, no one said this would be easy. So trying to get the details together for the next few weeks followed by ensuring that we have a care giver and subs was an item for today. Brainstorming and starting to call/email people asking them to give up their time was overwhelming. I think we quickly came to realize we are fortunate to come up with names to ask, but humbled by the fact that we have to. We really feel blessed to be part of a great support network.
The other thing we realized is that we will probably need to do some 'fundraising' due to the insurance issue and amount of travel that's going to be involved over the next few months. And then we started trying to find a place to stay. When we started doing some math, the Family House (Ronald McDonald House for adults/families at UPMC) while nice is going to cost $1500 month with lots of rules and less privacy than we'd like. So Amy and I started researching furnished apartments and what they cost. Looks like we can do something for a similar amount.
And then there was figuring out the best way to tell the children about the need for surgery and my needing to be in Pittsburgh for a long time. Thinking about that is difficult, and tiring. And no matter how we do it - it's going to break hearts. Mine, Amy's, and the kids.
Amy shared a really good analogy today. It's like basic training in the armed forces. They break you down before building you up. Today was a break down day, with glimmers of hope when we heard from our family and friends. Your emails of support were great. We know we are loved.
Tuesday, August 23, 2011
UPMC - First Few Days
Tuesday, August 23, 2011
Yesterday, I met with the UPMC team. And I do mean a team of people. But that was after I gave blood like I never gave before. My arm stopped giving, my Hickman line stopped giving, and they had to go to a prick on my other arm. It must have been over a liter of blood.....seriously.
So far the team includes some key people. There is the Transplant Coordinator - Mary. I really like her. Down to earth, can translate medical jargon and a caring person. There is another coordinator Cindy, the blood takers - Aileen and her friend (I missed her name), Laurie - the Nutrition Physician, and the head of the team - Dr. Kareem, the transplant surgeon.
After an x-ray, Amy (my wife) and I met with Dr. Kareem and gave him my history. The big surgeries.....1998, 2001, 2003, 2/2008, 8/2008, 11/2008 and 12/2009. The problems with strictures and fistulas. Just an overall picture. He also wanted to know about us, what we did, if we have children (yes) and why we ventured from Holland, Michigan to Pittsburgh to see him.
So why did we come to Pittsburgh - that will be another post, but it's because UPMC is the leader in small bowel transplants.
After reviewing the information we shared, Dr. Kareem looked at my eyes and said 'You need to be transplanted because your small bowel is too fragile. A regular surgery will lead to more of the same - fistulas. But before we can do that, you need to have a 'clean out' surgery to remove your existing small bowel and clean out any infections. This will lead to a more likely success than if we were to transplant now.'
Wow....two surgeries rather than one. A million questions run through your mind when you hear that. Like when will the first surgery be? How long will I need to recover before I can be 'transplanted'? How will this impact my family? How will we pay for the expenses of being at UPMC for longer than expected? The kids start school in two weeks and Amy starts work then - what will we do? Work - will I be back for a while before this starts? It will probably take a while to answer these questions but it is overwhelming to hear that.
And then, we got a call from Mary. She shared that Dr. Kareem reviewed my CT scan from today and wants to do the clean out surgery next week on Tuesday (8/30/11) since I've developed several more fistulas. We've known all along that my case was complicated, but this really just confirms it.
Tomorrow we meet with the finance team member, the social worker and the pyschiatrist. We are most interested in speaking to finance and social work. We have all kinds of questions regarding insurance coverage and living arrangements. Hopefully we'll get some answers tomorrow.
Yesterday, I met with the UPMC team. And I do mean a team of people. But that was after I gave blood like I never gave before. My arm stopped giving, my Hickman line stopped giving, and they had to go to a prick on my other arm. It must have been over a liter of blood.....seriously.
So far the team includes some key people. There is the Transplant Coordinator - Mary. I really like her. Down to earth, can translate medical jargon and a caring person. There is another coordinator Cindy, the blood takers - Aileen and her friend (I missed her name), Laurie - the Nutrition Physician, and the head of the team - Dr. Kareem, the transplant surgeon.
After an x-ray, Amy (my wife) and I met with Dr. Kareem and gave him my history. The big surgeries.....1998, 2001, 2003, 2/2008, 8/2008, 11/2008 and 12/2009. The problems with strictures and fistulas. Just an overall picture. He also wanted to know about us, what we did, if we have children (yes) and why we ventured from Holland, Michigan to Pittsburgh to see him.
So why did we come to Pittsburgh - that will be another post, but it's because UPMC is the leader in small bowel transplants.
After reviewing the information we shared, Dr. Kareem looked at my eyes and said 'You need to be transplanted because your small bowel is too fragile. A regular surgery will lead to more of the same - fistulas. But before we can do that, you need to have a 'clean out' surgery to remove your existing small bowel and clean out any infections. This will lead to a more likely success than if we were to transplant now.'
Wow....two surgeries rather than one. A million questions run through your mind when you hear that. Like when will the first surgery be? How long will I need to recover before I can be 'transplanted'? How will this impact my family? How will we pay for the expenses of being at UPMC for longer than expected? The kids start school in two weeks and Amy starts work then - what will we do? Work - will I be back for a while before this starts? It will probably take a while to answer these questions but it is overwhelming to hear that.
And then, we got a call from Mary. She shared that Dr. Kareem reviewed my CT scan from today and wants to do the clean out surgery next week on Tuesday (8/30/11) since I've developed several more fistulas. We've known all along that my case was complicated, but this really just confirms it.
Tomorrow we meet with the finance team member, the social worker and the pyschiatrist. We are most interested in speaking to finance and social work. We have all kinds of questions regarding insurance coverage and living arrangements. Hopefully we'll get some answers tomorrow.
Days
The past few months have been filled with 'days.' I'm sure you've had them - days that stick in your mind and you can't shake. Well, Wednesday, April 9, 2011 was one of those days. A day I had to come to terms with the fact that my Crohn's Disease ridden bowel can't sustain me over the long haul.
I was diagnosed with Crohn's Disease when I was 12 years old - 1986, but I had it a few years before that. My family just didn't know what it was or have the health insurance to really dig into it. (Dad went back to school for 3 years so we didn't have insurance, and for some reason my parents didn't apply for Medicaid.) So in 1986 when we had insurance and my health was deteriorated to a point where it could not be ignored, I was sick - my red blood cell count was low (like 4, when it was supposed to be 14). I hadn't grown in a long time (I was 4'9" in 2nd grade and 4'11" in 9th grade). I had become really skinny after wearing 'husky' as a little kid. It was noticeable decline.
Then there was the social changes too. I didn't leave the house to play outside unless it was for certain activities like music lessons or sports practice. It just wasn't worth getting caught away from a bathroom. Traveling long distances was difficult because I had to use the bathroom so often. To remedy this, we ended up buying a conversion van and putting a toilet in it. Nice huh?!
Anyway, I had a good life. I was active in choir, orchestra, and soccer throughout high school. I did well academically. I was a leader at church, which gave me lots of opportunities through my connections with adults. There was really little I could complain about other than I had to use the bathroom way too often. It physically hurt, was socially awkward, and just a pain.
College was great for the most part. I continued playing soccer, traveled to China for a semester, did okay academically because I found out that late night conversations could teach me more than a book sometimes, and had a good time. I even met my wife one summer and we got married at the end of school. But my senior year was difficult health wise. I had problems and just before graduation was hospitalized for the first time with a stricture. I just got out in time to walk across the stage and receive my diploma, but I looked terrible because I had been on prednisone. My face was chunky and round. I was heavy and full of acne. It wasn't the best of times health wise.
For the next three years, it just kept getting worse. My bowels were blocked, strictures formed, and well I could go on, but that would be too much information as they say. Sufficed to say, it was a pain in more ways than a few. Finally, it was decided that I needed to have surgery.
That began a journey that has led to this point......I am meeting with physicians from UPMC regarding a small bowel transplant. I'll share more along the way, but right now I'm at UPMC trying to figure out the next steps along the way.
I was diagnosed with Crohn's Disease when I was 12 years old - 1986, but I had it a few years before that. My family just didn't know what it was or have the health insurance to really dig into it. (Dad went back to school for 3 years so we didn't have insurance, and for some reason my parents didn't apply for Medicaid.) So in 1986 when we had insurance and my health was deteriorated to a point where it could not be ignored, I was sick - my red blood cell count was low (like 4, when it was supposed to be 14). I hadn't grown in a long time (I was 4'9" in 2nd grade and 4'11" in 9th grade). I had become really skinny after wearing 'husky' as a little kid. It was noticeable decline.
Then there was the social changes too. I didn't leave the house to play outside unless it was for certain activities like music lessons or sports practice. It just wasn't worth getting caught away from a bathroom. Traveling long distances was difficult because I had to use the bathroom so often. To remedy this, we ended up buying a conversion van and putting a toilet in it. Nice huh?!
Anyway, I had a good life. I was active in choir, orchestra, and soccer throughout high school. I did well academically. I was a leader at church, which gave me lots of opportunities through my connections with adults. There was really little I could complain about other than I had to use the bathroom way too often. It physically hurt, was socially awkward, and just a pain.
College was great for the most part. I continued playing soccer, traveled to China for a semester, did okay academically because I found out that late night conversations could teach me more than a book sometimes, and had a good time. I even met my wife one summer and we got married at the end of school. But my senior year was difficult health wise. I had problems and just before graduation was hospitalized for the first time with a stricture. I just got out in time to walk across the stage and receive my diploma, but I looked terrible because I had been on prednisone. My face was chunky and round. I was heavy and full of acne. It wasn't the best of times health wise.
For the next three years, it just kept getting worse. My bowels were blocked, strictures formed, and well I could go on, but that would be too much information as they say. Sufficed to say, it was a pain in more ways than a few. Finally, it was decided that I needed to have surgery.
That began a journey that has led to this point......I am meeting with physicians from UPMC regarding a small bowel transplant. I'll share more along the way, but right now I'm at UPMC trying to figure out the next steps along the way.
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