Well, Omaha called today and said that the next step now was to evaluate me for a transplant. We don't really know if that means I'm going to be put on the list for a new liver right away or if they're evaluating me to see if I really need the transplant. If they do decide I need a new liver then they'll have to do all sorts of tests to determine how good of a candidate I am/where to place me on the list. There are things like testing my heart and whatnot to see how I'll hold up under this kind of surgery. I don't smoke, drink or do illegal drugs, so I've got that going for me. Also, I'm young, so that helps.
My mom and I had a quick chat about it, but we're pretty set on Omaha, so we're going to ask them a few questions and then make our final decision on where we want to get the transplant done. I really want to get it done in Omaha; it's just convenient all the way around.
I'll let ya'll know when I know more.
Thursday, May 22, 2008
Tuesday, May 20, 2008
New Health Update
I haven't got a whole lot to update ya'll on right now, but I'll tell you what I know.
Friday mom and I went to Omaha for my cholangiogram. This type of cholangiogram was done right to the liver instead of going up through the artery in the thigh. We had a long wait, but we met a lot of nice, really cool people. The Interventional Radiology center is really cool. You have a curtain in front of your "room" but there are walls on either side of you (keeps things a little more sound-proof). There's also a flatscreen plasma TV in every "room" and there are twinkling lights in the ceiling that look like stars. There's also a strip of blue light so that it lookes like twighlight. I tried to capture the veiw with the camera phone and I've attached the picture. It doesn't do the scene justice, but it will give you an idea.
I was put under general anesthesia with intubation and everything. The procedure lasted about an hour or so. When I woke up I was in a lot of pain, not to mention my throat felt awful after having the tube in it. I got some morphine for the pain, which helped. Before I knew it they were making me sit up in a recliner. I was very reluctant about everything. I was so drugged I was hardly conscious! It was a slow recovery, but I was able to go home that night.
It took a couple days to get all the drugs out of my system. They really do a number on me! But still, as far as pain goes, not a bad recovery. I haven't had to rely on anything stronger than Tylenol as long as I stay in bed for the most part.
The results of the tests were this: There were no obstructions in my bile ducts, though the ducts are very small, so bile flow is slow. Everything looked pretty consistent for a liver with cirrhosis.
This means that the bile ducts are not the problem, so it leaves the high bilirubin and jaundice unexplained for the most part. Still, I've been getting better bit by bit. I think getting off the birth control has really helped. My appetite is getting better, I have more energy and I don't look so yellow. Most importantly, I'm not in so much pain.
On Thurday all the liver doctors have their meeting and my test results will be discussed then. I should hear from them around that time about where we should go from here. They'll probably want me to get another blood test to see how my liver enzymes and bilirubin look after being off the birth control for about a week. I'll keep you all updated with what the doctors say.
Friday mom and I went to Omaha for my cholangiogram. This type of cholangiogram was done right to the liver instead of going up through the artery in the thigh. We had a long wait, but we met a lot of nice, really cool people. The Interventional Radiology center is really cool. You have a curtain in front of your "room" but there are walls on either side of you (keeps things a little more sound-proof). There's also a flatscreen plasma TV in every "room" and there are twinkling lights in the ceiling that look like stars. There's also a strip of blue light so that it lookes like twighlight. I tried to capture the veiw with the camera phone and I've attached the picture. It doesn't do the scene justice, but it will give you an idea.
I was put under general anesthesia with intubation and everything. The procedure lasted about an hour or so. When I woke up I was in a lot of pain, not to mention my throat felt awful after having the tube in it. I got some morphine for the pain, which helped. Before I knew it they were making me sit up in a recliner. I was very reluctant about everything. I was so drugged I was hardly conscious! It was a slow recovery, but I was able to go home that night.
It took a couple days to get all the drugs out of my system. They really do a number on me! But still, as far as pain goes, not a bad recovery. I haven't had to rely on anything stronger than Tylenol as long as I stay in bed for the most part.
The results of the tests were this: There were no obstructions in my bile ducts, though the ducts are very small, so bile flow is slow. Everything looked pretty consistent for a liver with cirrhosis.
This means that the bile ducts are not the problem, so it leaves the high bilirubin and jaundice unexplained for the most part. Still, I've been getting better bit by bit. I think getting off the birth control has really helped. My appetite is getting better, I have more energy and I don't look so yellow. Most importantly, I'm not in so much pain.
On Thurday all the liver doctors have their meeting and my test results will be discussed then. I should hear from them around that time about where we should go from here. They'll probably want me to get another blood test to see how my liver enzymes and bilirubin look after being off the birth control for about a week. I'll keep you all updated with what the doctors say.
Wednesday, May 14, 2008
Health Update
So this is Becca's health update 300 or so. I've lost count.
First of all, I'll start off with a little background of my fabulous liver disease. PSC (Primary Schlerosing Cholangitis) has eaten through two of my livers so far and is eating through the one inside me as I type. What PSC does is kill bile ducts. Once said bile ducts are deceased, they leave scar tissue (this is called cirrhosis, or "hardening"). When the bile has limited placed to go it flows into the blood stream instead. This causes the person's skin to become yellow and is called jaundice. It also shows itself as increased bilirubin on blood tests. Normal bilirubin would be 0-2.
No one can predict how fast or slow PSC will progress or if it will even stop completely. If it continues to progress, it will eventually kill most of the bile ducts and liver will be mostly scar tissue, i.e. cirrhosis will take over. Then this person will need to receive a liver transplant in order to survive.
I've seen my old livers (they peacefully reside in a tissue archive in Minnesota) and boy are they hard and green. Right now, I feel as if my liver is hard as a rock, so the results of my biopsy that say my liver shows further cirrhosis are no surprise to me.
If you've seen me lately, you'll know that I have a yellow tinge to my skin. My bilirubin is 5.5. My liver doctor in Omaha has ordered a cholangiogram for this Friday. This is a test where a catheter is inserted into the artery in your thigh and moved up to the liver where bile ducts are injected with dye to detect any strictures. If there are strictures they sometimes need to put in a stent (a tube that opens up the bile duct and runs outside of the body). I've had both cholangiograms and stents in the past.
If there are strictures in my bile ducts it would certainly account for my liver pain. It would also explain the bilirubin/jaundice thing. If everything looks fine, then we don't know what's causing the pain and the fact still remains that my liver is deteriorating.
Other symptoms of mine include chills, low temperature, very low appetite, low blood pressure, extreme fatigue, some difficulty breathing, and of course, constant liver pain. Still, I'm able to take pretty low doses of pain meds and do a few things like sweep my room or make myself a snack everyday. I have a feeling, though, that after my procedure I'll be completely bedridden again. I've ordered lots of origami crafts off the internet to keep me occupied.
So what's the doctor's guess on how this all started? He thinks that perhaps the birth control I'm on for ovarian cysts and the high volume of antibiotics I was on during the winter may have jump started some of the liver problems. I'm not on antibiotics right now, so that's not a problem. My birth control has now been stopped.
I saw my gynecologist today and had an ultrasound to check on the cysts. When I was first diagnosed in the emergency room the right ovary had a cyst of 5 centimeters and the left was about 3 centimeters. Now, after almost 3 months of birth control, they have done the opposite of what we thought they would: they grew. The right cyst is now 7 centimeters and the left is 5 centimeters. I'm going to have to have surgery to remove the cysts and patch up any endometriosis and then go on some heavy-duty drug/hormone therapy to shut down my ovaries so they're not naughty anymore. My gynecologist is going to talk to my liver doctor about when we should do this and how to go about it since the procedure is so close to my colon and we want to prevent any further injury to it.
I think that's pretty much it for now. I'll try and keep everyone updated on what happens Friday. Thank you all for your help and concern!
First of all, I'll start off with a little background of my fabulous liver disease. PSC (Primary Schlerosing Cholangitis) has eaten through two of my livers so far and is eating through the one inside me as I type. What PSC does is kill bile ducts. Once said bile ducts are deceased, they leave scar tissue (this is called cirrhosis, or "hardening"). When the bile has limited placed to go it flows into the blood stream instead. This causes the person's skin to become yellow and is called jaundice. It also shows itself as increased bilirubin on blood tests. Normal bilirubin would be 0-2.
No one can predict how fast or slow PSC will progress or if it will even stop completely. If it continues to progress, it will eventually kill most of the bile ducts and liver will be mostly scar tissue, i.e. cirrhosis will take over. Then this person will need to receive a liver transplant in order to survive.
I've seen my old livers (they peacefully reside in a tissue archive in Minnesota) and boy are they hard and green. Right now, I feel as if my liver is hard as a rock, so the results of my biopsy that say my liver shows further cirrhosis are no surprise to me.
If you've seen me lately, you'll know that I have a yellow tinge to my skin. My bilirubin is 5.5. My liver doctor in Omaha has ordered a cholangiogram for this Friday. This is a test where a catheter is inserted into the artery in your thigh and moved up to the liver where bile ducts are injected with dye to detect any strictures. If there are strictures they sometimes need to put in a stent (a tube that opens up the bile duct and runs outside of the body). I've had both cholangiograms and stents in the past.
If there are strictures in my bile ducts it would certainly account for my liver pain. It would also explain the bilirubin/jaundice thing. If everything looks fine, then we don't know what's causing the pain and the fact still remains that my liver is deteriorating.
Other symptoms of mine include chills, low temperature, very low appetite, low blood pressure, extreme fatigue, some difficulty breathing, and of course, constant liver pain. Still, I'm able to take pretty low doses of pain meds and do a few things like sweep my room or make myself a snack everyday. I have a feeling, though, that after my procedure I'll be completely bedridden again. I've ordered lots of origami crafts off the internet to keep me occupied.
So what's the doctor's guess on how this all started? He thinks that perhaps the birth control I'm on for ovarian cysts and the high volume of antibiotics I was on during the winter may have jump started some of the liver problems. I'm not on antibiotics right now, so that's not a problem. My birth control has now been stopped.
I saw my gynecologist today and had an ultrasound to check on the cysts. When I was first diagnosed in the emergency room the right ovary had a cyst of 5 centimeters and the left was about 3 centimeters. Now, after almost 3 months of birth control, they have done the opposite of what we thought they would: they grew. The right cyst is now 7 centimeters and the left is 5 centimeters. I'm going to have to have surgery to remove the cysts and patch up any endometriosis and then go on some heavy-duty drug/hormone therapy to shut down my ovaries so they're not naughty anymore. My gynecologist is going to talk to my liver doctor about when we should do this and how to go about it since the procedure is so close to my colon and we want to prevent any further injury to it.
I think that's pretty much it for now. I'll try and keep everyone updated on what happens Friday. Thank you all for your help and concern!
Friday, May 9, 2008
Liver Let Die (a.k.a. I'm a Liver, no a Fighter)
I will write this blog in green because it's the color for organ donation.
I've been meaning to post a blog about my health since, oh, December 07. So here I am, posting a blog about my health.
I got 4 sinus infections in a row, starting around December before I was diagnosed with sinusitis. Then I got the flu. Then I went to Omaha to get a liver biopsy and a colonoscpy (which mean 2+ days of fasting and laxatives that made me really sick). They gave me sedation instead of anesthesia, and it wasn't enough so I was sent home and came back the next week, having gone through a second painful prep, and did the whole thing over, this time under anesthesia. The colon looked good and the liver looked good, but my blood tests were showing elevated liver enzymes. Plus, I was having such back pain from the biopsy that I had to go to the ER twice.
Not long after my second ER visit I was back, but with a different pain. A CAT scan showed large cysts on both ovaries. I was put on birth control (Yay! No more responsibility! LOL)
I continued to have mild to severe pain in my liver area and practically no appetite. I also suffered from bad nausea and sometimes was not even able to take my medications.
I went back to Omaha for another liver biopsy this past week and, again, they gave me sedation. Again, I had to come back to do it under anesthesia. The biopsy showed chirrosis (hardening/scaring of the liver), but no rejection that they could find. My blood tests still looked back and my bilirubin was up (meaning that I am jaundiced, meaning yellow skin).
So now we are going to do a consultation about my pain and to see if I need to be put on the list for a new liver. We're trying to make the decision about if we want the possible transplant to be done in Omaha or elsewhere because some of the staff at UNMC were very disrespectful to me, to the point where I wasn't getting the care I needed.
Anyway, that's it in a nutshell. There are plenty more details, but I'm too tired and lazy to type them all up.
In conclusion, please be an organ donor because when you die, I'll need your liver. Toodle-loo!
*EDIT*
A friend emailed me with some questions about the above and I thought I'd post the answers here since there are some of you who might be interested to know.
So how do they determine if you need another transplant?
They look at all my recent tests and see if things are improving or not. For instance, the liver disease I have, called PSC, kills the bile ducts in the liver. When the bile ducts die, they leave scar tissue. The more dead ducts, the more scar tissue. The scar tissue is hard and is called chirrosis. Eventually, with the lack of bile ducts, I suppose, the liver will die. My liver is becoming more and more chirrosed, which means that the disease is moving. My liver enzymes are also elevated and my skin is jaundiced (high bilirubin), both signs of progressing PSC.
and will it take a long time to do that?
I'm not sure how long it will take. I mean, obviously there is a limit because if we wait too long my liver will die :P What we need to decide is where I'm going to have my liver transplant because that is where they will need to evaluate me. One thing to consider is which hospital has the most organs available to it; that way I could get a liver sooner. That aside, Omaha would be the obvious choice, but unless we can get some answers for why I was treated so badly there this last week, we won't be going back for any more procedures. Mom is working on writing a letter and such.
and are you going to go to Minnesota to see your pals at Mayo?
If UNMC doesn't work out, Mayo would be the obvious second choice. Again, the question of organ availabilty is there. Also, I would no longer be a pediatric if I went to Mayo and we have no experience with how they treat their adult transplant patients, so that would need to be looked into as well. Since my dad will be here this weekend, hopefully we can reach some sort of tentative decision so that I can be evaluated for the transplant as soon as possible.
and if they decide that you need a new liver, do they prioritize you, or do you have to wait?
I'm guessing that's where the evaluation comes in. It should decide how soon/badly I need a liver and all that other stuff, so that they know where to put me on the list. You never know quite when a liver will come and when your status on the list will change. For instance, if my conditioned worsened I may be moved up on the list. Or if someone was removed from the list, etc. It depends on my condition as well as the conditions of others on the list as to where I'm placed. It's all a big legal/ethic/medical to-do.
And I suppose most of you want to know about the incidents that happened in the endoscopy center this last week. Well, it's all very complicated. We expressed our concerns about recovery and our desire to have my IV left in for a couple days just in case I had to go to the ER (it was my 4th IV that week). Everyone was all, "Sure, of course, sure, no problem, we understand". After the procedure my mom had to leave and my Gramma stayed with me. The minute my Gramma left to see my mom out the door I heard the nurses whispering about me. I'd already complained of terrible pain and had been given morphine. I couldn't hear exactly what they were saying but whenever my name came up they would start to whisper and it didn't sound nice. They made comments about my mom leaving us "stranded" in Omaha and what an inconvience is was to keep me there until my sister could come pick us up later in the evening. When my mom was there we talked to the nurse to see if I could be admited because I'd had such bad recoveries in the past and she got rather snappy with us. The doctor came to see me later on and said no, I didn't need to be admited, everyone had pain after biopsies (even though we told him that I'd been having persistant liver pain for months and had had two ER visits after my last biopsy). He called me "sensitive" and commented on how the doctor who had done my previous biopsy and had had to stop because I was in too much pain due to my inability to respond properly to sedation, was mad because he hadn't been able to finish his job. He also commented that this doctor lived with "whiny females". Then they took my IV out, too. It's kind of hard to describe all the mutterings and the doubtful looks, but needless to say I went in the bathroom and cried and was afraid for myself in case I got really sick. I'm one of those people who can look and talk like I'm perfectly healthy but I can be in physical agony at the same time. Sometimes it make it hard for people to believe me. I cried some more when I got home and talked to my mom, who went bonkers, of course, and is now writing a letter and will not send me back there for any procedures.
In my day, at the Mayo Clinic, transplant patients were treated with the utmost of caution. Even for a simple biopsy I was admited and kept over night, regardless of how ready I felt to go home. Even the cosmetic surgeon who took out my wisdom teeth last year kept me overnight even though I felt fine and didn't need any painkillers. So, it makes me mad that my very real pain was treated so wantonly.
My mom said that she put my story together with some of the things the doctor who did my first biopsy had said and she thinks he sort of "spread rumors" that Rebecca Manner fakes her pain. Did it ever cross his mind that maybe my pain might be real because I'm immune to sedatives...?!?!? And he knew that full well since he once tried to do a colonoscopy on me when I'd only had sedatives and it didn't work.
So that's my long, long story
I've been meaning to post a blog about my health since, oh, December 07. So here I am, posting a blog about my health.
I got 4 sinus infections in a row, starting around December before I was diagnosed with sinusitis. Then I got the flu. Then I went to Omaha to get a liver biopsy and a colonoscpy (which mean 2+ days of fasting and laxatives that made me really sick). They gave me sedation instead of anesthesia, and it wasn't enough so I was sent home and came back the next week, having gone through a second painful prep, and did the whole thing over, this time under anesthesia. The colon looked good and the liver looked good, but my blood tests were showing elevated liver enzymes. Plus, I was having such back pain from the biopsy that I had to go to the ER twice.
Not long after my second ER visit I was back, but with a different pain. A CAT scan showed large cysts on both ovaries. I was put on birth control (Yay! No more responsibility! LOL)
I continued to have mild to severe pain in my liver area and practically no appetite. I also suffered from bad nausea and sometimes was not even able to take my medications.
I went back to Omaha for another liver biopsy this past week and, again, they gave me sedation. Again, I had to come back to do it under anesthesia. The biopsy showed chirrosis (hardening/scaring of the liver), but no rejection that they could find. My blood tests still looked back and my bilirubin was up (meaning that I am jaundiced, meaning yellow skin).
So now we are going to do a consultation about my pain and to see if I need to be put on the list for a new liver. We're trying to make the decision about if we want the possible transplant to be done in Omaha or elsewhere because some of the staff at UNMC were very disrespectful to me, to the point where I wasn't getting the care I needed.
Anyway, that's it in a nutshell. There are plenty more details, but I'm too tired and lazy to type them all up.
In conclusion, please be an organ donor because when you die, I'll need your liver. Toodle-loo!
*EDIT*
A friend emailed me with some questions about the above and I thought I'd post the answers here since there are some of you who might be interested to know.
So how do they determine if you need another transplant?
They look at all my recent tests and see if things are improving or not. For instance, the liver disease I have, called PSC, kills the bile ducts in the liver. When the bile ducts die, they leave scar tissue. The more dead ducts, the more scar tissue. The scar tissue is hard and is called chirrosis. Eventually, with the lack of bile ducts, I suppose, the liver will die. My liver is becoming more and more chirrosed, which means that the disease is moving. My liver enzymes are also elevated and my skin is jaundiced (high bilirubin), both signs of progressing PSC.
and will it take a long time to do that?
I'm not sure how long it will take. I mean, obviously there is a limit because if we wait too long my liver will die :P What we need to decide is where I'm going to have my liver transplant because that is where they will need to evaluate me. One thing to consider is which hospital has the most organs available to it; that way I could get a liver sooner. That aside, Omaha would be the obvious choice, but unless we can get some answers for why I was treated so badly there this last week, we won't be going back for any more procedures. Mom is working on writing a letter and such.
and are you going to go to Minnesota to see your pals at Mayo?
If UNMC doesn't work out, Mayo would be the obvious second choice. Again, the question of organ availabilty is there. Also, I would no longer be a pediatric if I went to Mayo and we have no experience with how they treat their adult transplant patients, so that would need to be looked into as well. Since my dad will be here this weekend, hopefully we can reach some sort of tentative decision so that I can be evaluated for the transplant as soon as possible.
and if they decide that you need a new liver, do they prioritize you, or do you have to wait?
I'm guessing that's where the evaluation comes in. It should decide how soon/badly I need a liver and all that other stuff, so that they know where to put me on the list. You never know quite when a liver will come and when your status on the list will change. For instance, if my conditioned worsened I may be moved up on the list. Or if someone was removed from the list, etc. It depends on my condition as well as the conditions of others on the list as to where I'm placed. It's all a big legal/ethic/medical to-do.
And I suppose most of you want to know about the incidents that happened in the endoscopy center this last week. Well, it's all very complicated. We expressed our concerns about recovery and our desire to have my IV left in for a couple days just in case I had to go to the ER (it was my 4th IV that week). Everyone was all, "Sure, of course, sure, no problem, we understand". After the procedure my mom had to leave and my Gramma stayed with me. The minute my Gramma left to see my mom out the door I heard the nurses whispering about me. I'd already complained of terrible pain and had been given morphine. I couldn't hear exactly what they were saying but whenever my name came up they would start to whisper and it didn't sound nice. They made comments about my mom leaving us "stranded" in Omaha and what an inconvience is was to keep me there until my sister could come pick us up later in the evening. When my mom was there we talked to the nurse to see if I could be admited because I'd had such bad recoveries in the past and she got rather snappy with us. The doctor came to see me later on and said no, I didn't need to be admited, everyone had pain after biopsies (even though we told him that I'd been having persistant liver pain for months and had had two ER visits after my last biopsy). He called me "sensitive" and commented on how the doctor who had done my previous biopsy and had had to stop because I was in too much pain due to my inability to respond properly to sedation, was mad because he hadn't been able to finish his job. He also commented that this doctor lived with "whiny females". Then they took my IV out, too. It's kind of hard to describe all the mutterings and the doubtful looks, but needless to say I went in the bathroom and cried and was afraid for myself in case I got really sick. I'm one of those people who can look and talk like I'm perfectly healthy but I can be in physical agony at the same time. Sometimes it make it hard for people to believe me. I cried some more when I got home and talked to my mom, who went bonkers, of course, and is now writing a letter and will not send me back there for any procedures.
In my day, at the Mayo Clinic, transplant patients were treated with the utmost of caution. Even for a simple biopsy I was admited and kept over night, regardless of how ready I felt to go home. Even the cosmetic surgeon who took out my wisdom teeth last year kept me overnight even though I felt fine and didn't need any painkillers. So, it makes me mad that my very real pain was treated so wantonly.
My mom said that she put my story together with some of the things the doctor who did my first biopsy had said and she thinks he sort of "spread rumors" that Rebecca Manner fakes her pain. Did it ever cross his mind that maybe my pain might be real because I'm immune to sedatives...?!?!? And he knew that full well since he once tried to do a colonoscopy on me when I'd only had sedatives and it didn't work.
So that's my long, long story
Subscribe to:
Posts (Atom)
