I had a really good talk with my transplant coordinator the other day. I voiced my concern about the results of my scans, mainly if I was still a candidate for living donor transplant. The news that I had some fatty deposits on my liver freaked me out! (Obviously I'm still a candidate for donation, if after this next round of appointments goes well, I'll probably be booked for a liver biopsy. This way, they can tell the extent of my fatty deposits. I'm told it needs to be less than 10%.) Turns out, the great majority of the population has fatty deposits on the liver. Now, I don't drink alcohol, I'm not over-weight and I'm hellishly active. So what's the deal?? The culprit most likely is....drum roll....
Processed foods!
Hmmmm...guilty as charged! I loves my white bread products! Hell I have white bread INSIDE my white bread sandwiches!! White rice is another yummy processed demon-food! I love sugar in my coffee and I've been known to nibble on a Lindt chocolate or two! Hard to imagine a life without processed food products...but I'm willing to give it a shot! I won't cut it out entirely, baby steps first!! This week, no white bread products and only 1/2 the sugar in my coffee. Apparently, the body can absorb these fatty deposits just by a change in diet. What I have I got to lose? Wish me luck!
Sunday, June 28, 2009
Thursday, June 25, 2009
New Schedule..
Sorry for the lull in postings, it's been a hectic couple of days! It appears all my fretting regarding the cancelled appointments was just that! Cancelled appointments! The transplant assessment office sent me a new schedule of appointments at Toronto General!
Wednesday July 15/09
9:30 AM Medical Consultation
12:00 PM Psychiatric Consultation
1:30 PM General Meeting
As I understand it, the Medical Consultation is a fairly extensive physical examination by a doctor not affiliated with the transplant program. This way, this doctor can give an unbiased opinion on my health and well being, kind of a second opinion. I was told this appointment could go a full 2 hours! Yipes!
The Psychiatric Consultation is a sit down meeting to make sure I'm mentally sound....I'm guessing they will ask questions about me, what my motives are, do I know the risks and so on. I'm sure there will be questions asked of me I have not given much thought on.
The General meeting might be with the transplant department people....but I'm not sure. I'm fairly sure the whole day, as with the others, will be an eye-opening experience.
Wednesday July 15/09
9:30 AM Medical Consultation
12:00 PM Psychiatric Consultation
1:30 PM General Meeting
As I understand it, the Medical Consultation is a fairly extensive physical examination by a doctor not affiliated with the transplant program. This way, this doctor can give an unbiased opinion on my health and well being, kind of a second opinion. I was told this appointment could go a full 2 hours! Yipes!
The Psychiatric Consultation is a sit down meeting to make sure I'm mentally sound....I'm guessing they will ask questions about me, what my motives are, do I know the risks and so on. I'm sure there will be questions asked of me I have not given much thought on.
The General meeting might be with the transplant department people....but I'm not sure. I'm fairly sure the whole day, as with the others, will be an eye-opening experience.
Tuesday, June 16, 2009
Cancelled appointment
I have a cell phone, it's very little and very quiet. When I'm at work, I turn on the vibrate feature and tuck it into my pocket....if the phone rings - it'll vibrate! Well, every time I get a call whilst said phone is on vibrate while in my pocket, it feels like bees attacking me and I freak out....every fickin' time!!
Anyways, I got a call from Toronto General Hospital at around 2:15pm today. The lady that called told me they overbooked appointments for Wednesday June 17th and that my appointment would be cancelled. ~sigh~ She said she would see what she could do to re-schedule them for me. More waiting...or are they trying to tell me something?? Hmmmm. Sorry, but right now, I am paranoid my quest has failed.
Anyways, I got a call from Toronto General Hospital at around 2:15pm today. The lady that called told me they overbooked appointments for Wednesday June 17th and that my appointment would be cancelled. ~sigh~ She said she would see what she could do to re-schedule them for me. More waiting...or are they trying to tell me something?? Hmmmm. Sorry, but right now, I am paranoid my quest has failed.
Monday, June 15, 2009
1st Surgical Consultaion....
I had my first surgical consultation today and I came away with mixed feelings. When today's appointment was set up, I was under the impression that all my tests looked good and that this appointment was the next logical step for the surgical team to explain the risk, benefits and procedures of the surgery to me.
The meeting was scheduled for 11:00am, I arrived a little early but was led to an examination room to wait for the surgeon. This surgeon was quite nice, very to-the-point but very personable as well! Now, I wouldn't say he tried to talk me out of the surgery, but he certainly described the adventure I wanted to take in graphic detail leaving no stone unturned as far as what to expect during and after the procedure! He made drawings and talked at length about procedures, pain, recovery times, pain management, restrictions on activities, pain, medications I'd need to take after the surgery, follow-up appointments and other follow-up procedures. Remember in my last post where they told me I had some complex bile ducts on my right side? Well, this doctor mentioned that fact as well and suggested that because of the risks and possible complications to me and a possible adult recipient, he recommended that I donate my left lobe to a pediatrics patient. I agreed, I have no preference as to who gets my liver, I just want to help someone, the less complications the better.
He then had me lay on this examination table and pressed around my abdomen quite a bit remarking that after reviewing my test results, he didn't think I would have any troubles with this surgery.....then he dropped a bomb-shell. Apparently, both my MRI and the CT scan showed no signs of liver problems, BUT the ultrasound showed signs of a fatty liver!
Fatty liver?? At 6'3" and 205 lbs, huh??!! I'm a pretty fit guy, my job is very physical and I 'try' to eat properly. (weakness is Lindt chocolate!!) How did this happen? He even showed me the remarks written by the ultrasound guru! I froze...could this be the end of my journey?
- Note: Fatty liver deposits are not the result of eating fatty foods. There are literaly hundreds of reasons one could have a fatty liver...too many to list anyways.
Then came the second bomb-shell...."you also have polyps on your gall bladder". Gadzooks!! I'm falling apart here! I thought they said my tests looked great!!? The doctor, sensing my distress calmly stated "so we have a discrepancy here, two tests say no liver problems, one test says liver problems". Apparently, the ultrasound is a more detailed, sensitive scan, so it sees things the others don't. As far as the gall bladder goes, it poses no danger regardless if I donate or not, if I do donate, they remove it anyways. He went on to explain that more tests would be needed and that more than likely, along with an echocardiogram and a breathing/lung test, they would need to do a liver biopsy. ~sigh~ Needless to say, I left the hospital with a very heavy heart. I mean if I have any health problems, it's great that these tests will discover them! At the same time, what if I'm eliminated from the donation process??
I still have two tests on Wedneday June 17th, my appointment at 8:00am is a brutally rigorous three hour physical....after that I meet with the 'aftercare' doctor at 11:00am. I'll be sure to post all about it when I get home.
Here are the surgeons scribblings from today.
The meeting was scheduled for 11:00am, I arrived a little early but was led to an examination room to wait for the surgeon. This surgeon was quite nice, very to-the-point but very personable as well! Now, I wouldn't say he tried to talk me out of the surgery, but he certainly described the adventure I wanted to take in graphic detail leaving no stone unturned as far as what to expect during and after the procedure! He made drawings and talked at length about procedures, pain, recovery times, pain management, restrictions on activities, pain, medications I'd need to take after the surgery, follow-up appointments and other follow-up procedures. Remember in my last post where they told me I had some complex bile ducts on my right side? Well, this doctor mentioned that fact as well and suggested that because of the risks and possible complications to me and a possible adult recipient, he recommended that I donate my left lobe to a pediatrics patient. I agreed, I have no preference as to who gets my liver, I just want to help someone, the less complications the better.
He then had me lay on this examination table and pressed around my abdomen quite a bit remarking that after reviewing my test results, he didn't think I would have any troubles with this surgery.....then he dropped a bomb-shell. Apparently, both my MRI and the CT scan showed no signs of liver problems, BUT the ultrasound showed signs of a fatty liver!
Fatty liver?? At 6'3" and 205 lbs, huh??!! I'm a pretty fit guy, my job is very physical and I 'try' to eat properly. (weakness is Lindt chocolate!!) How did this happen? He even showed me the remarks written by the ultrasound guru! I froze...could this be the end of my journey?
- Note: Fatty liver deposits are not the result of eating fatty foods. There are literaly hundreds of reasons one could have a fatty liver...too many to list anyways.
Then came the second bomb-shell...."you also have polyps on your gall bladder". Gadzooks!! I'm falling apart here! I thought they said my tests looked great!!? The doctor, sensing my distress calmly stated "so we have a discrepancy here, two tests say no liver problems, one test says liver problems". Apparently, the ultrasound is a more detailed, sensitive scan, so it sees things the others don't. As far as the gall bladder goes, it poses no danger regardless if I donate or not, if I do donate, they remove it anyways. He went on to explain that more tests would be needed and that more than likely, along with an echocardiogram and a breathing/lung test, they would need to do a liver biopsy. ~sigh~ Needless to say, I left the hospital with a very heavy heart. I mean if I have any health problems, it's great that these tests will discover them! At the same time, what if I'm eliminated from the donation process??
I still have two tests on Wedneday June 17th, my appointment at 8:00am is a brutally rigorous three hour physical....after that I meet with the 'aftercare' doctor at 11:00am. I'll be sure to post all about it when I get home.
Here are the surgeons scribblings from today.
Friday, June 12, 2009
More Catch-up....
One of the last things my transplant coordinator told me was that they would be in touch with me the following week....but they had to review the results of my tests first to see if I was indeed a candidate for donation. I was told that the entire transplant team will meet together with the results of my tests, if all my scans looked good and everything met certain criteria, I was good to go.
Needless to say, all I could think of on the way home was I wonder if I am as healthy as I think I am? This waiting made for a long, long weekend!
On Wednesday morning, the transplant office called me with good news...all the results of my tests came back positive and all the scans looked great! Wooo hooo!! The hair on my arms actually stood on end at this news!! I guess I am as healthy as I had hoped I was! The only concern he had, and it wasn't even a concern was that I had some complex bile ducts on my right side. This doesn't rule out an adult transplant but he did mention a pediatric transplant might be perfect.
((Now, one thing to note here is I signed up to be anonymous donor, this means my donated liver will go the person most in need of a transplant in my blood group.))
I was then told that the office would schedule more appointments for me and that they would be in touch. On June 9th, 2009 I received my next schedule. These are:
Monday June 15, 2009
11:00 AM 1st Surgical Consultation
Wednesday June 17, 2009
8:00 AM Medical Consultation
11:00 PM General Meeting
So we shall see what happens at these meetings!!
Needless to say, all I could think of on the way home was I wonder if I am as healthy as I think I am? This waiting made for a long, long weekend!
On Wednesday morning, the transplant office called me with good news...all the results of my tests came back positive and all the scans looked great! Wooo hooo!! The hair on my arms actually stood on end at this news!! I guess I am as healthy as I had hoped I was! The only concern he had, and it wasn't even a concern was that I had some complex bile ducts on my right side. This doesn't rule out an adult transplant but he did mention a pediatric transplant might be perfect.
((Now, one thing to note here is I signed up to be anonymous donor, this means my donated liver will go the person most in need of a transplant in my blood group.))
I was then told that the office would schedule more appointments for me and that they would be in touch. On June 9th, 2009 I received my next schedule. These are:
Monday June 15, 2009
11:00 AM 1st Surgical Consultation
Wednesday June 17, 2009
8:00 AM Medical Consultation
11:00 PM General Meeting
So we shall see what happens at these meetings!!
Wednesday, June 10, 2009
Let's Play Catch-Up...
Sorry these entries are so long, I will try to keep them manageable.
In early March 2009, I contacted the 'Transplant Assessment Office' at Toronto General Hospital with a whole lot of questions and a request for information on living organ donation. The woman I spoke to was awesome! She not only answered all my questions, she seemed genuinely interested in me, and what my motives were. When all was said and done, she promised to email me a 'Living Donor Information package'.
On March 10, 2009, I received the 'Living Donor Information Package'!! This included a 14 page 'manual' and a 6 page 'living donor health history questionnaire'. There's a lot of information to read and digest in this and nothings been sugar-coated.
Jump ahead to April 27th, 2009, this was the day I faxed the completed health questionnaire from my workplace to the Donor Assessment Office along with a copy of my latest blood tests. Up until now, I never knew my blood type! I'm A+!! I called the office to make sure everything went through ok and they said it did.
On May 8,2009 I got a call from the Donor Transplant Assessment Office. This was to confirm they had scheduled a number of tests for my assessment as a potential donor. These tests were scheduled for May 28, 2009 at the hospital itself. By my request, that schedule was emailed to me. Since my testing was to begin at 9:00 in the morning, and because I live over two hours away from the hospital itself, I decided to spend the evening prior to the testing at a hotel a few blocks from Toronto General Hospital, that way I wouldn't get stuck in traffic and I could be well rested. The only setback I had was I forgot my running shoes at home and only had my work boots. Needless to say, I had to buy some runners the night before the testing. Also, I was instructed not to eat anything after midnight the night before testing straight through till after my ultrasound which was scheduled for 1:30pm. Also, no food again 4 hours prior to my MRI, which was scheduled for 9:30pm. Sheesh!!
Here now, is the schedule from May 28th (names withheld for privacy)
9:00am This was a general meeting with my transplant assessment coordinator on the 12th floor. She went over the schedule of tests, the procedures, organ donation in general and just talked to me about everything I could expect this day. She also informed me that they would contact me the following Tuesday with my results....those results being I am still a candidate, or I'm not a candidate. She then gave me a blue hospital Id card and sent me on my way. What a sweet angel she was!
10:00am I headed down to the ground floor for some blood work and an ECG. As luck would have it, I had to walk through a frickin' food court to get to the blood work place!! The smell of bacon was especially strong that day too!! I checked in at the desk almost 15 minutes early and was very surprised to wait less than 5 minutes until they called me in! The tech that took my blood was super! Very friendly, very talkative....just like a favorite Aunt! To be honest, the entire hospital staff was just wonderful, I can't praise them enough! Anyways, she harvested 15 vials of blood and coaxed a urine sample out of me. After that, she hooked me up for the ECG. I could have hugged her she was so nice. I then had to walk back through the food court....all I smell is coffee and muffins!!
11:00am Off to the medical imaging department for an abdominal CT scan! Once again, I checked in about 20 minutes early but only had to wait about 5 minutes to get called in!! The tech gave me a robe thingy to wear, only socks, underwear and shoes...no jewelry, he then directed me to a waiting room where another tech came and led me to the CT scan. This guy was great, he explained what was going to happen and helped me into the scanner. He then hooked an IV into my arm that was to pump dye through me and started the machine. I was actually pretty relaxed as I lay there, he spoke through a speaker system and told me when to, and not to, hold my breathe. Then my whole arm tingled as that dye shot into me. Very strange feeling. In any case, that test lasted more than 45 minutes!
12:30pm Back in line to register for the chest x-ray, got a strange look from the lady at the desk, but that might be because I still have the robe thingy on! Simple procedure, great tech as well. As I sat in the waiting room, I chatted with two other fellows. One guy was there for a follow up from a heart transplant, he was in his 60's, the other guy, maybe early 30's, had a heart defect that this hospital discovered and was having surgery later that week. Nice guys, and both remarked how wonderful the staff was. After my x-ray, I wished both guys all the best and went to change back into street clothes. The X-ray tech looked way to young to be an X-ray tech.
1:30pm Back in line yet again to register for the abdominal ultrasound. The lady at the desk didn't even ask for the ID card this time!! I did have to wait about 30 minutes though as I was really early. Good thing I brought my Nintendo! As I waited...all I could think of was attacking that food court once I was done!! When I was called in, I had to change into the backless hospital robe. Once again, the tech was great and she walked me through the procedure. An ultrasound is pretty basic, this one lasted a long time though as she mapped out all my veins and whatnot. When she finished, she advised me to head over to the MRI in case someone cancelled an appointment, I could get it! Good idea, even though I'm really hungry.
9:30pm So I go to register for the MRI and it's only 2:15pm. The lady at the desk tells me I can register, but I can't leave as I am registering early and on a standby list. I'm sooooo hungry! I ask her if I can eat and she tells me no because my system has to be empty for the scan. Grrrr!!! (I would not marry this woman) Long story short...there were no cancellations and I had to wait in that stupid room till 9:00pm before I got called in. Once I was called in, I suited up in the backless robes and was forced to drink this container of heavy, thick, white milky looking shit. It was horrible and my stomach cursed me for it. The MRI is a loud clunky machine. They outfitted me with headphones and strapped me to a table. They gave me directions through the headphones of when to breathe and when to hold....apparently, I fell asleep twice in the machine so I wasn't following instructions very well. I actually left the hospital at 11:20pm. My car was 4 blocks away and I needed coffee! I won't even talk about the food I ate on the way home...it's embarrassing. So ends the day of testing.
In early March 2009, I contacted the 'Transplant Assessment Office' at Toronto General Hospital with a whole lot of questions and a request for information on living organ donation. The woman I spoke to was awesome! She not only answered all my questions, she seemed genuinely interested in me, and what my motives were. When all was said and done, she promised to email me a 'Living Donor Information package'.
On March 10, 2009, I received the 'Living Donor Information Package'!! This included a 14 page 'manual' and a 6 page 'living donor health history questionnaire'. There's a lot of information to read and digest in this and nothings been sugar-coated.
Jump ahead to April 27th, 2009, this was the day I faxed the completed health questionnaire from my workplace to the Donor Assessment Office along with a copy of my latest blood tests. Up until now, I never knew my blood type! I'm A+!! I called the office to make sure everything went through ok and they said it did.
On May 8,2009 I got a call from the Donor Transplant Assessment Office. This was to confirm they had scheduled a number of tests for my assessment as a potential donor. These tests were scheduled for May 28, 2009 at the hospital itself. By my request, that schedule was emailed to me. Since my testing was to begin at 9:00 in the morning, and because I live over two hours away from the hospital itself, I decided to spend the evening prior to the testing at a hotel a few blocks from Toronto General Hospital, that way I wouldn't get stuck in traffic and I could be well rested. The only setback I had was I forgot my running shoes at home and only had my work boots. Needless to say, I had to buy some runners the night before the testing. Also, I was instructed not to eat anything after midnight the night before testing straight through till after my ultrasound which was scheduled for 1:30pm. Also, no food again 4 hours prior to my MRI, which was scheduled for 9:30pm. Sheesh!!
Here now, is the schedule from May 28th (names withheld for privacy)
9:00am This was a general meeting with my transplant assessment coordinator on the 12th floor. She went over the schedule of tests, the procedures, organ donation in general and just talked to me about everything I could expect this day. She also informed me that they would contact me the following Tuesday with my results....those results being I am still a candidate, or I'm not a candidate. She then gave me a blue hospital Id card and sent me on my way. What a sweet angel she was!
10:00am I headed down to the ground floor for some blood work and an ECG. As luck would have it, I had to walk through a frickin' food court to get to the blood work place!! The smell of bacon was especially strong that day too!! I checked in at the desk almost 15 minutes early and was very surprised to wait less than 5 minutes until they called me in! The tech that took my blood was super! Very friendly, very talkative....just like a favorite Aunt! To be honest, the entire hospital staff was just wonderful, I can't praise them enough! Anyways, she harvested 15 vials of blood and coaxed a urine sample out of me. After that, she hooked me up for the ECG. I could have hugged her she was so nice. I then had to walk back through the food court....all I smell is coffee and muffins!!
11:00am Off to the medical imaging department for an abdominal CT scan! Once again, I checked in about 20 minutes early but only had to wait about 5 minutes to get called in!! The tech gave me a robe thingy to wear, only socks, underwear and shoes...no jewelry, he then directed me to a waiting room where another tech came and led me to the CT scan. This guy was great, he explained what was going to happen and helped me into the scanner. He then hooked an IV into my arm that was to pump dye through me and started the machine. I was actually pretty relaxed as I lay there, he spoke through a speaker system and told me when to, and not to, hold my breathe. Then my whole arm tingled as that dye shot into me. Very strange feeling. In any case, that test lasted more than 45 minutes!
12:30pm Back in line to register for the chest x-ray, got a strange look from the lady at the desk, but that might be because I still have the robe thingy on! Simple procedure, great tech as well. As I sat in the waiting room, I chatted with two other fellows. One guy was there for a follow up from a heart transplant, he was in his 60's, the other guy, maybe early 30's, had a heart defect that this hospital discovered and was having surgery later that week. Nice guys, and both remarked how wonderful the staff was. After my x-ray, I wished both guys all the best and went to change back into street clothes. The X-ray tech looked way to young to be an X-ray tech.
1:30pm Back in line yet again to register for the abdominal ultrasound. The lady at the desk didn't even ask for the ID card this time!! I did have to wait about 30 minutes though as I was really early. Good thing I brought my Nintendo! As I waited...all I could think of was attacking that food court once I was done!! When I was called in, I had to change into the backless hospital robe. Once again, the tech was great and she walked me through the procedure. An ultrasound is pretty basic, this one lasted a long time though as she mapped out all my veins and whatnot. When she finished, she advised me to head over to the MRI in case someone cancelled an appointment, I could get it! Good idea, even though I'm really hungry.
9:30pm So I go to register for the MRI and it's only 2:15pm. The lady at the desk tells me I can register, but I can't leave as I am registering early and on a standby list. I'm sooooo hungry! I ask her if I can eat and she tells me no because my system has to be empty for the scan. Grrrr!!! (I would not marry this woman) Long story short...there were no cancellations and I had to wait in that stupid room till 9:00pm before I got called in. Once I was called in, I suited up in the backless robes and was forced to drink this container of heavy, thick, white milky looking shit. It was horrible and my stomach cursed me for it. The MRI is a loud clunky machine. They outfitted me with headphones and strapped me to a table. They gave me directions through the headphones of when to breathe and when to hold....apparently, I fell asleep twice in the machine so I wasn't following instructions very well. I actually left the hospital at 11:20pm. My car was 4 blocks away and I needed coffee! I won't even talk about the food I ate on the way home...it's embarrassing. So ends the day of testing.
The Begining...
Wow, this is going to be a lot harder than it seems! To be honest, I really didn't want to start my first blog, let alone a blog about this! That being said, it was suggested to me that I document about this journey. Now, If you visit my other blog, you'll notice I'm not very good at writing, so to those of you who visit this blog, please be patient with me and my obvious lack of literary skills.
So where do I begin? Well, as the name of the blog implies, I have chosen to become an living organ donor, a living liver donor to be exact. This blog is where I'll document every triumphant and boring detail of my journey! Now, even though there's a ton of information on the interwebs about organ donation, I thought I would share my story of the donor process from the very start of my testing, right through to the surgery itself to my eventual recovery.
My decision to become a living organ donor wasn't an easy one, nor was it made overnight. Some time ago I registered to donate my organs when I die, but I actually hope to live for a long time yet. Right now, there are too many people waiting for organs....sadly, a great majority of those people waiting, will die waiting. Besides, there are two members of my family living with donated organs....so I've seen first hand the positive effects of organ donation.
Lets get started!
So where do I begin? Well, as the name of the blog implies, I have chosen to become an living organ donor, a living liver donor to be exact. This blog is where I'll document every triumphant and boring detail of my journey! Now, even though there's a ton of information on the interwebs about organ donation, I thought I would share my story of the donor process from the very start of my testing, right through to the surgery itself to my eventual recovery.
My decision to become a living organ donor wasn't an easy one, nor was it made overnight. Some time ago I registered to donate my organs when I die, but I actually hope to live for a long time yet. Right now, there are too many people waiting for organs....sadly, a great majority of those people waiting, will die waiting. Besides, there are two members of my family living with donated organs....so I've seen first hand the positive effects of organ donation.
Lets get started!
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