On Thursday, I came home to both an email & a phone message from my transplant coordinator. She had the radiologist review my scans, turns out my anatomy cleared and I'm cleared to go onward!! She also booked another appointment for me on August 20/09....the dreaded liver biopsy! ~shudder~ This, I believe, will be my biggest hurdle to date.
The biopsy is needed to rule out any fatty infiltration in my liver. During my initial testing, one of the tests, the abdominal ultrasound, showed signs of fatty deposits. Even though none of my other tests confirmed this, the discrepancy must be addressed and a biopsy will provide the definitive result. ( pretty technical sounding huh? ) Other than the catheter, this is the one procedure I am dreading most....I've had a biopsy before, and it hurt.
Years ago, I found this painful lump under my nipple. I actually dismissed it as a skin irritation until it got to be quite big and painful. Clothes hurt it, laying down made it hurt, if anything hit me there it hurt. When it got puffy, it really started affecting my daily routine. My doctor ordered blood tests, ultrasounds and even a mammogram (now, as a guy, I have no breast mass, but they were able to stuff what little of me I had into that machine, ladies, I share your pain) but no cause or definite diagnosis was given. In the end, I underwent a biopsy. The doctor that performed the procedure told me they can't numb me up or freeze the area because they wanted a 'clean' sample. I was strapped to a bed, told to take deep breathes and then they shoved this thick, long needle through my areola and into the mass, plunging around for what seemed like minutes for a sample..not once, but three times! It hurt. It actually hurt so much my penis inverted itself, shrivelled up back into my stomach and stayed there for a week! Ok, it didn't really do that but it did hurt and I'm not ashamed to admit I had tears in my eyes when it was finally over. In the end, my painful lump turned out to be nothing more than a benign mass. Day surgery took care of it and I've been fine ever since!
With this memory fresh in my mind, I've been assured if the same procedure was performed today, it wouldn't be as bad and the whole thing is quite simple. Uh-huh. The parting line on the email from the transplant coordinator states, "They typically require people to have someone drive them home afterwards, please let me know if this is a problem and I will speak with the doctor".
Can't wait!
Saturday, August 15, 2009
Tuesday, August 11, 2009
More Confusion...
Just checked my email and as promised, there was an email from my transplant coordinator. She writes....
""I am surrounded by confusion.........sorry about the mess-up in the lab. They still didn't draw everything!
Review today looked okay to proceed, there is some confusion regarding right vs left lobe d/t the new findings on the CT cholangiogram. The surgeons reviewed for about 20minutes and waffled back and forth about cancelling all together or going forward so I am having one of our radiologists review everything for a final opinion.
I promise to let you know ASAP and then we will book outstanding assessments - I am presuming a positive outcome.""
~sigh~
""I am surrounded by confusion.........sorry about the mess-up in the lab. They still didn't draw everything!
Review today looked okay to proceed, there is some confusion regarding right vs left lobe d/t the new findings on the CT cholangiogram. The surgeons reviewed for about 20minutes and waffled back and forth about cancelling all together or going forward so I am having one of our radiologists review everything for a final opinion.
I promise to let you know ASAP and then we will book outstanding assessments - I am presuming a positive outcome.""
~sigh~
BLOW, BLOW, BLOW!!!
Wow! Monday's appointments turned out to be a hectic day of confusion! It was the hottest, muggiest day of the year in Toronto too! Bleh!
My first scheduled meeting of the day was with my transplant coordinator. She explained to me what tests I was having this day and we had a general chat of future events and appointments outstanding. She also told me they have a recipient in mind for me, a 'small female adult'. (That's all I know, and that's all I will probably ever know as I'm doing this anonymously.) We also discussed a tentative surgery date. September 16th! As she reviewed my chart, she added a blood test for me to get before I left for home. Our parting conversation was that she would be in touch with the results of the CT cholangiogram as soon as she gets them.
The CT cholangiogram was an ordeal! As I was registering at the reception, one nurse remarked that the department was way behind in appointments. I was a little spooked because I didn't want to be late for the next appointment at 3:15. I only had to wait about 15 minutes before I was called in though and was led down the familiar hallway to the change rooms....then I was handed the gowns! I don't know what it is about the gowns, but I really do like them! One goes on in front, like how a surgeon would wear one, the other goes on like a robe, true comfort! Truth be known...I go commando underneath! The boys are free, cool breeze and sway-age! Nobody knows, and I like the freedom! Anyways, the tech guy leads me into this little room where he starts getting all this stuff ready. Needles, IV tower with bag of solution/contrast and a little vial of something. As he's prepping we're making small talk, then he says I can't drive for 5 hours after this scan......huh?? That wasn't in the plan! 'Sorry fella' I tell him, 'but I'm driving'! He leaves to consult with the head guy and they both come back to talk to me. Turns out, the little vial has Benedryl (or something like it) in it. They add it to the contrast medium so the patient doesn't have an allergic reaction to it....but the Benedryl makes you drowsy. So, at this point, my option is take the test with the Benedryl, or the test gets cancelled. Now, since I wasn't ready to take the gowns off, we compromised! They only put 1/3 of the Benedryl stuff in with the medium. They hooked the IV up, let it empty into my arm, which took about 15 minutes, then they gave me the scan. This scan was to further highlight my biliary anatomy so the surgeons could assess them more closely. Modern medicine is fascinating isn't it? When it was finished, I didn't feel drowsy or tired at all. As I went to change back into my street clothes, I was sooooo tempted to steal the gowns, but I figured I'd get caught and it would be embarrassing explaining my hospital gown fetish to the cops. ~sigh~ I leave the department gown less.
The Pulmonary Function tests were strange! I was lead into the 'testing' area, it's a huge room partitioned off into cubicles made of curtains, and every where I look, there are people sitting in chairs with their mouths wrapped around this white tube hooked to a machine and technicians are screaming at them....BLOW BLOW BLOW!!!! MORE! HARDER! BLOW! Of course in my immature mind I'm thinking...'what the hell kind of porno set have I entered??' This, however, is the test! They pinch your nose shut with a clip, and they get you to breathe into this white tube-y thing....no robes though. You do regular breathing, panting, fast exhales, fast inhale....it all measures lung capacity and it's all hooked up to a machine and computer. I was expecting something totally different, but it was actually pretty neat. As your doing the test, the technicians are literally screaming at you to blow, blow BLOW! KEEP GOING!!! The test took maybe 20 minutes, no dizziness or lightheaded-ness and still no drowsy effects from the Benedryl! At the end of the test, I was told this was more for the anesthesiologist....makes sense to me!
My last stop was the at the blood lab. I gave the receptionist my cards and the test number, but they were confused. They called me in and drew blood, 8 vials, but they were still confused. They asked me who ordered the tests and when I told them, the names didn't match and the tests didn't match. As they were finishing up, they promised me they would take care of things and I was on my way. At least I have a surgery date scheduled! Things are looking good thus far!
My first scheduled meeting of the day was with my transplant coordinator. She explained to me what tests I was having this day and we had a general chat of future events and appointments outstanding. She also told me they have a recipient in mind for me, a 'small female adult'. (That's all I know, and that's all I will probably ever know as I'm doing this anonymously.) We also discussed a tentative surgery date. September 16th! As she reviewed my chart, she added a blood test for me to get before I left for home. Our parting conversation was that she would be in touch with the results of the CT cholangiogram as soon as she gets them.
The CT cholangiogram was an ordeal! As I was registering at the reception, one nurse remarked that the department was way behind in appointments. I was a little spooked because I didn't want to be late for the next appointment at 3:15. I only had to wait about 15 minutes before I was called in though and was led down the familiar hallway to the change rooms....then I was handed the gowns! I don't know what it is about the gowns, but I really do like them! One goes on in front, like how a surgeon would wear one, the other goes on like a robe, true comfort! Truth be known...I go commando underneath! The boys are free, cool breeze and sway-age! Nobody knows, and I like the freedom! Anyways, the tech guy leads me into this little room where he starts getting all this stuff ready. Needles, IV tower with bag of solution/contrast and a little vial of something. As he's prepping we're making small talk, then he says I can't drive for 5 hours after this scan......huh?? That wasn't in the plan! 'Sorry fella' I tell him, 'but I'm driving'! He leaves to consult with the head guy and they both come back to talk to me. Turns out, the little vial has Benedryl (or something like it) in it. They add it to the contrast medium so the patient doesn't have an allergic reaction to it....but the Benedryl makes you drowsy. So, at this point, my option is take the test with the Benedryl, or the test gets cancelled. Now, since I wasn't ready to take the gowns off, we compromised! They only put 1/3 of the Benedryl stuff in with the medium. They hooked the IV up, let it empty into my arm, which took about 15 minutes, then they gave me the scan. This scan was to further highlight my biliary anatomy so the surgeons could assess them more closely. Modern medicine is fascinating isn't it? When it was finished, I didn't feel drowsy or tired at all. As I went to change back into my street clothes, I was sooooo tempted to steal the gowns, but I figured I'd get caught and it would be embarrassing explaining my hospital gown fetish to the cops. ~sigh~ I leave the department gown less.
The Pulmonary Function tests were strange! I was lead into the 'testing' area, it's a huge room partitioned off into cubicles made of curtains, and every where I look, there are people sitting in chairs with their mouths wrapped around this white tube hooked to a machine and technicians are screaming at them....BLOW BLOW BLOW!!!! MORE! HARDER! BLOW! Of course in my immature mind I'm thinking...'what the hell kind of porno set have I entered??' This, however, is the test! They pinch your nose shut with a clip, and they get you to breathe into this white tube-y thing....no robes though. You do regular breathing, panting, fast exhales, fast inhale....it all measures lung capacity and it's all hooked up to a machine and computer. I was expecting something totally different, but it was actually pretty neat. As your doing the test, the technicians are literally screaming at you to blow, blow BLOW! KEEP GOING!!! The test took maybe 20 minutes, no dizziness or lightheaded-ness and still no drowsy effects from the Benedryl! At the end of the test, I was told this was more for the anesthesiologist....makes sense to me!
My last stop was the at the blood lab. I gave the receptionist my cards and the test number, but they were confused. They called me in and drew blood, 8 vials, but they were still confused. They asked me who ordered the tests and when I told them, the names didn't match and the tests didn't match. As they were finishing up, they promised me they would take care of things and I was on my way. At least I have a surgery date scheduled! Things are looking good thus far!
Saturday, August 8, 2009
More Tests!
I don't know if it was me, my computer, or the interwebs in general, but I have had a hell of a time logging into this site to do an update!! Sheeesh! If this continues, I may move to World Press!
During the weekend,last weekend to be exact, I decided to email the hospital to see if there was any news, on Tuesday they replied with three new appointments.
Monday August 10/09
1:00 PM General Meeting
2:00 PM CT Cholangiogram
3:15 PM Pulmonary Function Tests
Not a big fan of the CT scans. It's not a painful process but they pump this dye into you and it just makes you feel weird! Anyways, this test involves a different 'contrast medium' that will highlight the biliary anatomy for the surgeons to assess more closely. Apparently these tests are hard to schedule...hence the delay in my appointment schedule. Truth be known, I kind of like the airy gowns they give ya to wear while in the machine itself! Very comfortable and breezy. Ummm, perhaps I've said too much.
I'm thinking the pulmonary function tests is to gauge lung capacity and how well said lungs move oxygen. A google search revealed "forced breathing and rapid breathing may produce light-headedness during and after the test". Nice!
That's the update for now, I'll post more Monday night or Tuesday.
During the weekend,last weekend to be exact, I decided to email the hospital to see if there was any news, on Tuesday they replied with three new appointments.
Monday August 10/09
1:00 PM General Meeting
2:00 PM CT Cholangiogram
3:15 PM Pulmonary Function Tests
Not a big fan of the CT scans. It's not a painful process but they pump this dye into you and it just makes you feel weird! Anyways, this test involves a different 'contrast medium' that will highlight the biliary anatomy for the surgeons to assess more closely. Apparently these tests are hard to schedule...hence the delay in my appointment schedule. Truth be known, I kind of like the airy gowns they give ya to wear while in the machine itself! Very comfortable and breezy. Ummm, perhaps I've said too much.
I'm thinking the pulmonary function tests is to gauge lung capacity and how well said lungs move oxygen. A google search revealed "forced breathing and rapid breathing may produce light-headedness during and after the test". Nice!
That's the update for now, I'll post more Monday night or Tuesday.
Friday, July 17, 2009
Random Thoughts
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.
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.
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!
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