I'm not very good at blogging. Any tree-dwelling chimp can post pictures, videos and songs to a web page and call it a blog, (see my other blog for evidence of that!) so I really envy those people who create organized, well written blogs with structure! My written thoughts are sporadic, lack substance and are not very well organized.
In any case, there are 2 reasons for this blogs existence. My original purpose for this blog was to keep track of the entire donation process, a place where I could document, (in as much detail as possible,) all the procedures, appointments and interviews I encounter during this journey. That way, when all is said and done, my experience might help some other potential donor navigate the donation process with a different perspective on what's involved.
The second reason is so that family and friends can follow my progress at their leisure. That being said, it should be noted that apart from my immediate family, only a very few of my friends know of my intentions as I don't want to be the center of attention in social gatherings. This may change once I get closer to a surgery date, but for now, this is how I am handling it.
Donating an organ is major surgery and I'm not walking into this blind. When I first started this process, I researched everything I could about living donation, from donor requirements to the hospitals that perform the operations. (I choose Toronto General Hospital because I believe they are the best in this country.)
During the testing, the most common statement I've heard from every doctor so far is related to pain...expect pain. Does this scare me? Not really, but I do have some concerns and fears.
The operation itself doesn't spook me, the transplant team is looking out for me, if they find a problem that makes me ineligible to donate, or if the risks to my health are too great, the testing stops. Besides, if something really bad happened to me on the operating table, it could shut down transplant program, and no one wants that. So I have complete faith in the TGH staff! As far as pain management goes, they have that covered with medications. I fully expect there will be discomfort as well, but that too will pass. The only real fear I have is the catheter! I just can't get past the idea of anyone jamming a plastic tube up my cock to handle my peeing function! Ahhh, the indignities of being a patient. Thankfully, they do it while you're out! Mind you, when they pull it out, you're awake! My only saving grace is I'm hung like a deer tick, so they don't have far to go...but still, ouch!
My only real concern involves possible future events based solely on a dream. My brother Rick and his wife Lisa have three boys. Ben, age 6, Josh, age 3 and Kevin, age 3 months. I love these kids and it would kill me if one of them ever needed a liver transplant and I was unable to donate due to the fact I already donated. I had a dream me and Rick were frantically searching through boxes looking for my liver because one of his boys needed it before he could go down a slide. Very weird dream.
So, why am I doing this? It seems we all take certain things in our life for granted. I for one go to bed at night knowing that when the sun rises, so will I. The vast majority of us go about our daily lives knowing we have a place to call home, we have people in our lives that love and care for us, and that bad things don't happen to us...bad things happen to other people.
Oh sure, we all get shit on from time to time...jobs are lost, relations fail, colds and flu's set us back,...but for the most part, life is wonderful and worth living. Everyone should have that chance. At this point in my life, if I can help someone live a normal life, why shouldn't I?
This doesn't make me a hero, nor am I really saving a life here. Highly skilled doctors, surgeons and nurses however are. My role is merely providing the needed "part". So ends this edition of my random thoughts.
Friday, July 17, 2009
Consults x 3
Sorry for the lack of new posts here, I just didn't have any new news! On July 15th however, I headed off to Toronto General Hospital for my next three appointments.
9:30am This was my medical consultation with a doctor not affiliated with the transplant program. I was really expecting a gruelling head to toe physical , which was not the case! The doctor was great, he went over a bunch of my paper work and asked me lots of questions. He checked my blood pressure, asked about the medications I was on and just generally poked around. Turns out everything was good and he didn't see any problems. Now, I should mention there was a problem with my blood pressure reading, he checked it a few times but the reading was still off. I think there was a problem with the machine itself but I promised him I would get it checked. He wished me well and sent me on my way. Total time about an hour and a half.
12:00pm Up to the 8th floor for a psychiatric consult! Now, all along I really had no idea what to expect at this meeting, so to be honest, I was kind of nervous before I went in. Turns out this doctor quickly put me at ease and we had a great little chat! She asked lots of questions, mostly about my decision to donate. Everything she asked me had no right or wrong answers, it's kind of weird and hard to explain......I left her office feeling pretty good!
1:30pm My last appointment on this day was with one of the transplant doctors. To my surprise, she was waiting for me at the reception counter. Super nice doctor too! She went over my previous tests with me, checked out my abdomen and explained once again, in too much detail, what the procedure involved and what I could expect in the days leading up to, and after the donation. At one point in the meeting, this doctor was called away for a few minutes by my transplant coordinator to check on another patient, so she stayed with me and we chatted for a bit. I voiced my concern again about the 'fatty deposits' that turned up on my abdominal ultrasound. Surprisingly, she didn't seem all that concerned and convinced me not to worry. End result is they will do a liver biopsy to find out for sure. Also, they have added my MRI to be reviewed again on Tuesday to assess right vs left lobe donation. When the doctor came back in, she talked a bit about my medical history and noticed that I was never vaccinated for Hepatitis 'B'. Wow! She also gave me a prescription for something to help me with a sinus infection that I was having trouble with. She made some notes and I was assured more tests would be booked and that so far, everything is good and I'm still very much a candidate. As I left the office, I let out a huge sigh of relief, there is light at the end of this tunnel!
9:30am This was my medical consultation with a doctor not affiliated with the transplant program. I was really expecting a gruelling head to toe physical , which was not the case! The doctor was great, he went over a bunch of my paper work and asked me lots of questions. He checked my blood pressure, asked about the medications I was on and just generally poked around. Turns out everything was good and he didn't see any problems. Now, I should mention there was a problem with my blood pressure reading, he checked it a few times but the reading was still off. I think there was a problem with the machine itself but I promised him I would get it checked. He wished me well and sent me on my way. Total time about an hour and a half.
12:00pm Up to the 8th floor for a psychiatric consult! Now, all along I really had no idea what to expect at this meeting, so to be honest, I was kind of nervous before I went in. Turns out this doctor quickly put me at ease and we had a great little chat! She asked lots of questions, mostly about my decision to donate. Everything she asked me had no right or wrong answers, it's kind of weird and hard to explain......I left her office feeling pretty good!
1:30pm My last appointment on this day was with one of the transplant doctors. To my surprise, she was waiting for me at the reception counter. Super nice doctor too! She went over my previous tests with me, checked out my abdomen and explained once again, in too much detail, what the procedure involved and what I could expect in the days leading up to, and after the donation. At one point in the meeting, this doctor was called away for a few minutes by my transplant coordinator to check on another patient, so she stayed with me and we chatted for a bit. I voiced my concern again about the 'fatty deposits' that turned up on my abdominal ultrasound. Surprisingly, she didn't seem all that concerned and convinced me not to worry. End result is they will do a liver biopsy to find out for sure. Also, they have added my MRI to be reviewed again on Tuesday to assess right vs left lobe donation. When the doctor came back in, she talked a bit about my medical history and noticed that I was never vaccinated for Hepatitis 'B'. Wow! She also gave me a prescription for something to help me with a sinus infection that I was having trouble with. She made some notes and I was assured more tests would be booked and that so far, everything is good and I'm still very much a candidate. As I left the office, I let out a huge sigh of relief, there is light at the end of this tunnel!
Sunday, June 28, 2009
Processed Foods
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!
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!
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!!
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