This was written by my mother, the story from my birth til my discharge after my second transplant. A lot has happened since then, but it hasn't been updated yet.
Intro p1
Intro p2
Intro p3
Intro p4
Intro p5
Day of transplant
Liver pics WARNING. ACTUAL ORGANS.
Dad being silly
news article 1
picture from na1
news article 2
news article 3
Scars page
Something I wrote shortly after my first biopsy in the adult hospital, last september.
Quote:
To make up for the disappearance and lack of updates, I bring you guys a tale of horror, lulz, and the perils of moving from a pediatric hospital to an adult one.
During the course of my stay, I was informed I'd be having a liver biopsy, to confirm or deny that my elevated blood enzymes were due to rejection, not some virus. No big deal, I'd had several of these before, nothing new.
Or so I thought.
For those of you who don't know, a liver biopsy involves taking a sizable needle (in length only, it's not very big around), passing it between the bottom two ribs on the right side, through the muscle around the ribs, through the protective lining around the liver, and into the organ itself, to remove a small piece for laboratory testing. There are risks of course, made much rarer by medical advances.
I was never very unnerved by this procedure, since I'd had it so many times it was as mundane as having an IV line started. You see, I've had them since I was around seven years old, possibly earlier, my memory is largly unreliable beyond seven. I've had five since my second transplant in 2002, and an unknown amount while I had my first transplanted organ. I was always well sedated, not always enough to totally knock me out, but always a sufficient amount to send me straight to 'I don't give a s**t what you guys are doing to me, it's all cool' land. There've been a few times when I didn't really get as mellowed out, and was actually aware of what was happening, but still too drugged to really care. So, there was never any reason to get worked up about this, cuz I remembered so little of the procedures, except for the annoyance of not being allowed to eat for around 8-12 hours before hand, and 2-4 hours after, all to prevent barfing when sedated, which besides being humilating, could be a potential choking hazard. Yay.
Friday, I learned that in the adult hospital, there is no sedation, no lovely trip to '******** it all' land. You get a couple shots of lidocaine to numb the area up, and that's it. Needless to say, I spent all of friday getting myself more and more riled up, anxious, and sick feeling. When my lunch arrived, I practically vacuumed it up, and immediately regretting doing so, because I knew they couldn't sedate me on a full stomach, no matter how hysteric I became.
When the doctor came by to begin the procedure, I made a strategic retreat to the bathroom to buy a few minutes to attempt a desperate window escape. Being on the seventh floor meant such plans were doomed to failure, and I emerged from the bathroom with all the enthusiasm of a girl going to see her ob/gyn doctor for the yearly exam.
That it was being done in the room was a further insult, as I've always considered the patient room to be a kind of sanctuary, where the worst thing they can do to you involves IV needles and the terror of the catheter sliding out as the nurse searches for the tagaderm and tape. I've always been used to going to the OR, or at the very least to the procedure room, the one room in the hospital I'm actually scared of being in.
Lying on the the bed in my pajama pants and the quintessential hospital gown, I had a moment of mild amusement as the doctor struggled to examine my side without having to touch my breast to move it out of the way. The distraction was short lived, as he had me hold the offending part out of the way, and eventually found a site further down. Let me tell you, I'm tender around those lower ribs, just poking lightly down there is enough to make me cry uncle, and he was really poking and prodding. It was only my faith in the medical field that kept me on that bed.
Swabbing the area he'd chosen merely ramped my anxiety up a few levels, and when he put the sterile drape on it to protect the site from contamination, I was already distressed enough to start breathing erracticaly. As much as I revel in the thrill of battle on Warcraft and other games, I'd never be able to survive in such environments. My pain threshold is remarkably low.
The first shot of lidocaine wasn't so bad, just a shot to numb the skin. I'm not sure if you guys know, but lidocaine burns like a b***h before it numbs you up, as if it's searing the nerves, killing them and therefore depriving you of virtually all sensation aside from pressure. The burn of that one shot had me extremely uncomfortable. The second shot was hell. I could feel the needle piercing things, and while I've gotten this sensation in my hand while being stuck for labs, having it in my side was a totally different thing. And then the burn kicked in, and I came very close to saying things that would have gotten me in big trouble. And, denying myself the relief of swearing, I just started crying and hyperventilating.
And then the doctor, bless his soul, set the needle down and took my hand and comforted me. Apparently, the worst was over, it would only take a few seconds for the lidocaine to kick in, and I wouldn't feel a thing. As we waited, he coached me on how he wanted me to breathe when he got the sample, and with mom's encouragement, I actually calmed down.
Then, he picked up the exacto knife, and I just froze, unable to move or think. And I never saw or even felt what he did with it, and was immensely relieved. This sense of euphoria did not last long, as I was able to feel the biopsy needle, and though it was only the pressure of it piercing various tissues, I spent every second expecting to be suddenly assaulted by excruciating pain. I was told to breathe, heard the pop of needle as the sample was extracted, and then it was over.
And as I watched the doctor put the things back on the tray, the nurse removed the drape, and put a bandaid (I kid you not) on the site. A wad of gauze was held in place against it as I was rolled onto my side and told to stay there for about 45 minutes and let things start knitting together.
It was at that point that I opened my big mouth and asked if I could see the sample.
The doctor just laughed and obliged, dropping it into the sterile solution to protect it during its short trip to the lab, and held up the jar. It looked like a long piece of fish turds. Only bright blood red, not the dark red associated with liver. It was gross, truly, and made me silently reaffirm my decision to never eat liver, ever.
And as the doctor and nurse departed, mom came over and sat on the end of the bed, and for the first time in a long time, I felt embarrassed about losing my cool in the hospital. For someone used to the hospital before she even got out of first grade, everything was old news to me, and I was totally accustomed to knowing the drill as well as some of the nurses. I liked knowing how things where done and when, exactly how much discomfort to expect, and being able to converse with the doctors and nurses in their own terminology about my problems. For someone like me, being caught off guard like that was horribly unnerving, and making a fuss like I had was really embarrassing. It wasn't the soul-scarring torture I had convinced myself it was. Sure, the lidocaine burns like hell, and the sensation of the needle inside is one of the most unnerving experiences ever, but not waiting four hours for moderate sedation to wear off, and being able to eat normally beforehand was a good trade off.
Because before I was even allowed to sit up and do as I pleased, all the remaining discomfort had faded, and aside from the feeling of the bandaid pulling at the skin, there was nothing to remind me of the procedure I'd just gone through. As much as I sleep, I can't stand laying in bed for four hours, just waiting for the sedation to fully wear off. No lingering nausaea from the drugs, no hours spent in a groggy daze, no waiting around and having to smell the food when breakfast trays are brought around...
As crazy as it may seem, I much prefer this method.
During the course of my stay, I was informed I'd be having a liver biopsy, to confirm or deny that my elevated blood enzymes were due to rejection, not some virus. No big deal, I'd had several of these before, nothing new.
Or so I thought.
For those of you who don't know, a liver biopsy involves taking a sizable needle (in length only, it's not very big around), passing it between the bottom two ribs on the right side, through the muscle around the ribs, through the protective lining around the liver, and into the organ itself, to remove a small piece for laboratory testing. There are risks of course, made much rarer by medical advances.
I was never very unnerved by this procedure, since I'd had it so many times it was as mundane as having an IV line started. You see, I've had them since I was around seven years old, possibly earlier, my memory is largly unreliable beyond seven. I've had five since my second transplant in 2002, and an unknown amount while I had my first transplanted organ. I was always well sedated, not always enough to totally knock me out, but always a sufficient amount to send me straight to 'I don't give a s**t what you guys are doing to me, it's all cool' land. There've been a few times when I didn't really get as mellowed out, and was actually aware of what was happening, but still too drugged to really care. So, there was never any reason to get worked up about this, cuz I remembered so little of the procedures, except for the annoyance of not being allowed to eat for around 8-12 hours before hand, and 2-4 hours after, all to prevent barfing when sedated, which besides being humilating, could be a potential choking hazard. Yay.
Friday, I learned that in the adult hospital, there is no sedation, no lovely trip to '******** it all' land. You get a couple shots of lidocaine to numb the area up, and that's it. Needless to say, I spent all of friday getting myself more and more riled up, anxious, and sick feeling. When my lunch arrived, I practically vacuumed it up, and immediately regretting doing so, because I knew they couldn't sedate me on a full stomach, no matter how hysteric I became.
When the doctor came by to begin the procedure, I made a strategic retreat to the bathroom to buy a few minutes to attempt a desperate window escape. Being on the seventh floor meant such plans were doomed to failure, and I emerged from the bathroom with all the enthusiasm of a girl going to see her ob/gyn doctor for the yearly exam.
That it was being done in the room was a further insult, as I've always considered the patient room to be a kind of sanctuary, where the worst thing they can do to you involves IV needles and the terror of the catheter sliding out as the nurse searches for the tagaderm and tape. I've always been used to going to the OR, or at the very least to the procedure room, the one room in the hospital I'm actually scared of being in.
Lying on the the bed in my pajama pants and the quintessential hospital gown, I had a moment of mild amusement as the doctor struggled to examine my side without having to touch my breast to move it out of the way. The distraction was short lived, as he had me hold the offending part out of the way, and eventually found a site further down. Let me tell you, I'm tender around those lower ribs, just poking lightly down there is enough to make me cry uncle, and he was really poking and prodding. It was only my faith in the medical field that kept me on that bed.
Swabbing the area he'd chosen merely ramped my anxiety up a few levels, and when he put the sterile drape on it to protect the site from contamination, I was already distressed enough to start breathing erracticaly. As much as I revel in the thrill of battle on Warcraft and other games, I'd never be able to survive in such environments. My pain threshold is remarkably low.
The first shot of lidocaine wasn't so bad, just a shot to numb the skin. I'm not sure if you guys know, but lidocaine burns like a b***h before it numbs you up, as if it's searing the nerves, killing them and therefore depriving you of virtually all sensation aside from pressure. The burn of that one shot had me extremely uncomfortable. The second shot was hell. I could feel the needle piercing things, and while I've gotten this sensation in my hand while being stuck for labs, having it in my side was a totally different thing. And then the burn kicked in, and I came very close to saying things that would have gotten me in big trouble. And, denying myself the relief of swearing, I just started crying and hyperventilating.
And then the doctor, bless his soul, set the needle down and took my hand and comforted me. Apparently, the worst was over, it would only take a few seconds for the lidocaine to kick in, and I wouldn't feel a thing. As we waited, he coached me on how he wanted me to breathe when he got the sample, and with mom's encouragement, I actually calmed down.
Then, he picked up the exacto knife, and I just froze, unable to move or think. And I never saw or even felt what he did with it, and was immensely relieved. This sense of euphoria did not last long, as I was able to feel the biopsy needle, and though it was only the pressure of it piercing various tissues, I spent every second expecting to be suddenly assaulted by excruciating pain. I was told to breathe, heard the pop of needle as the sample was extracted, and then it was over.
And as I watched the doctor put the things back on the tray, the nurse removed the drape, and put a bandaid (I kid you not) on the site. A wad of gauze was held in place against it as I was rolled onto my side and told to stay there for about 45 minutes and let things start knitting together.
It was at that point that I opened my big mouth and asked if I could see the sample.
The doctor just laughed and obliged, dropping it into the sterile solution to protect it during its short trip to the lab, and held up the jar. It looked like a long piece of fish turds. Only bright blood red, not the dark red associated with liver. It was gross, truly, and made me silently reaffirm my decision to never eat liver, ever.
And as the doctor and nurse departed, mom came over and sat on the end of the bed, and for the first time in a long time, I felt embarrassed about losing my cool in the hospital. For someone used to the hospital before she even got out of first grade, everything was old news to me, and I was totally accustomed to knowing the drill as well as some of the nurses. I liked knowing how things where done and when, exactly how much discomfort to expect, and being able to converse with the doctors and nurses in their own terminology about my problems. For someone like me, being caught off guard like that was horribly unnerving, and making a fuss like I had was really embarrassing. It wasn't the soul-scarring torture I had convinced myself it was. Sure, the lidocaine burns like hell, and the sensation of the needle inside is one of the most unnerving experiences ever, but not waiting four hours for moderate sedation to wear off, and being able to eat normally beforehand was a good trade off.
Because before I was even allowed to sit up and do as I pleased, all the remaining discomfort had faded, and aside from the feeling of the bandaid pulling at the skin, there was nothing to remind me of the procedure I'd just gone through. As much as I sleep, I can't stand laying in bed for four hours, just waiting for the sedation to fully wear off. No lingering nausaea from the drugs, no hours spent in a groggy daze, no waiting around and having to smell the food when breakfast trays are brought around...
As crazy as it may seem, I much prefer this method.
