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.
Tuesday, August 30, 2011
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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