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.
Wednesday, September 21, 2011
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.
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