I went to Emory for an ultrasound today at the bequest of my Doctor, for my liver. My liver enzymes have been quite high over the past two years now, and no one has discovered why. When I was first diagnosed with Gastroparesis, the theory was that it was because of stones in my liver. They went in and relaxed my sphincter that doles out bile from my liver, removing a "gravely type sludge," as my doctor put it, from where my gallbladder used to be. The Doctor at Emory told me that with Gastroparesis, there should be no pain. Every time a doctor tells me that, I want to laugh in their face and correct them. Tell them that if they had Gastroparesis, they'd feel differently. Everyone I've talked to that has been diagnosed, even with mild Gastroparesis, has dealt with some sort of pain.
So, a good friend and fraternity brother of mine, picked me up and took me to Emory. I was led into the room with the ultrasound machine. I laid down on the table and lifted up my shirt for the procedure. I was happy to say that there were butterflies painted on the ceiling tiles so that I actually had something to focus on. The lab tech started and pressed the probe down on such tender parts that had been giving me such pain. I bit my lip and squeezed my friend's hand because it hurt so much. I had an emesis bag, just in case I needed it.
I looked away because it hurt too much. My friend said the lab tech was making awful faces and she had a feeling that they found something wrong. Of course, the lab techs won't tell you anything - it's a liability factor. She had me turn to my side and looked at my kidneys as well. Then, we were done. The procedure probably took half an hour of thorough investigating with a very painful probe. Ultrasounds normally aren't painful, but I've been experiencing pain in my upper right side. I didn't start retching until we were in the car. Anytime a doctor or someone presses on my upper right side and my stomach - I vomit. Thankfully, it waited until I was home. I fell over on the toilet and vomited up what I tried to eat for lunch today - considering I haven't eaten in a while. I was thankful I had something to vomit up besides bile. I realize how bad that sounds but I've been throwing up nothing but bile for days, my throat welcomed some relief.
I've been coughing a lot because my throat is irritated from vomiting. The doctor will receive my ultrasound report in a few days and call me with the results. I'm nervous because my liver enzymes are high and I don't know what that means. I've never been so nervous. Will I have to have more surgery? Will someone take me seriously? I need some help. What I'm doing right now is not living - it's awful.
The only solace in the past few days have been my husband, who is a wonderful and caring man, and reading outside in the sunshine.
I am anxiously awaiting the results and to wonder where to go from here.
In the meantime, I've made an appointment with a psychologist because I am determined to prove to these doctors that the anxiety didn't get worse until after I had Gastroparesis. The doctor I saw before, not at Emory, at Mayo, told me that this was all in my head an all anxiety related. I want a doctor to evaluate that and tell me that it's not true. I just need someone to listen to me. I can't make up vomiting or pain like this. It's immobilizing. My friends and family see me suffer and I barely recognize my own reflection in the mirror because of my hallowed out, pale face, and the dark circles under my eyes. I think it will be good to have someone to speak with anyway, but I want someone to validate me and say that my GP is legitimate and that it's not caused by anxiety. That made me angry more than anything when the Mayo doctor told me that. I think he only did so because he correctly assumed that I'd be a complicated case, and he didn't want to deal with me personally.
I'm keeping track of my symptoms in a written journal, along with how I feel. A GP friend of mine told me about an app available called MySymptom Tracker. It's $3 in the Google Play store but worth it. So, I track my vomiting, medications, mood, etc on my phone as well. You can download it and bring it in with you to your doctor, which I find useful. I document everything. It's a good habit to have.
I feel like I'm preparing for battle. I'm going to fight to be healthy again.
Showing posts with label liver enzymes. Show all posts
Showing posts with label liver enzymes. Show all posts
Friday, September 20, 2013
Friday, February 8, 2013
Mayo Clinic - Day Five. Follow up Visit with the Doctor
I met with the doctor today at Mayo to go over all of my test results from this week of testing.
We started off talking about my lab work. My labs were normal, except for my enzymes. The number was 108 and normal is around 40. That kind of bothers me because my liver enzymes were also really high in the hospital, in the 440s to 500s. He is going to recheck my labs in three months to rule out chronic liver disease, which sounds a bit scary. My white blood cell count was up, at 12.8. I don't have any explanation for that except for the throat infection I vomited myself into last week.
My 48 hour BRAVO TEST was positive. The test came back showing three different occasions for heartburn. The regurgitation I had did not correspond with reflux events on the Bravo meter device.
I want to address the heartburn thing. I know what heartburn feels like and I swear that I did NOT feel the heartburn while doing the Bravo test. I have been vomiting up stomach acid, but I thought that was because there was nothing left on my stomach. Am I just so used to the acid reflux that I can't tell when it's occurring now?
My esophagus looked normal and there wasn't any damage. I'm not sure how that happened because it was so swollen and sore last week. I still have issues swallowing and I have the bravo capsule attached to my esophagus until it falls off.
I have to manage this like GERD. I've tried Protonix, Pepcid, Prevacid, Prilosec, and Dexilant in the past to control acid reflux. So, the doctor called in some ACIPHEX to help control my symptoms. He told me to try this for three months. He also told me to learn DIAPHRAGMATIC DEEP BREATHING. Dr. Bouras said that will help me to help control the vomiting. I have to come back to the Mayo Clinic to meet with behavioral specialists to learn how to this technique but it will have to be approved by my insurance before I can schedule the appointment. But, the deep breathing will help me hold the food down.
If the medication does NOT work, then he will have to do surgery. He recommended a NISSEN FUNDOPLICATION.
The doctor also cleared me to start back on BENTYL. This is great news because my stomach spasms hurt SO much! This will help them subside. He did caution me to be careful about these types of medication because they can make gastric emptying even slower.
If I'm still having issues three months from now on the new PPI and with the deep breathing, he also mentioned doing a Sleuth Study which is a reflux study that isn't just about acid, but any kind of reflux. I'm sorry that I don't have a link for you but I can't find anything on the Internet about it. He also mentioned the Nissen, as I mentioned before. That would make it impossible for me to vomit and could create issues for me swallowing.
I also have severe constipation. Nothing goes down and everything comes back up so he suggested Milk of Magnesium at night. I've been doing that but I guess I'll up the dosage. He said that in some cases, severe constipation can lead to upper GI motility issues. I'm to take 2 - 4 tablespoons of Magnesium at bedtime and avoid any medications that could cause constipation.
He may eventually do rectal testing on me. Man, that sounds like fun! Kidding. Anyway, he said that even though your colon could be normal (mine was via a colonoscopy) that you can still have rectal issues. There are tests to see if the muscles are functioning properly and he would also check for any possible blockages. He also mentioned doing another test called the PELVIC FLOOR TEST. I had never heard of such a thing. It's a group of muscles that control your bladder and bowel movements and this test makes sure that group of muscles work properly.
I asked him if there was anything else I could take for the nausea because the Zofran is hit or miss and Phenergan, well, doesn't last that long. I think I'm building up a tolerance. he said that I could take SCOPOLAMINE patches, which you put behind your ear and wear for three days but they have the potential to make you sleepy. So, I'll ask my doctor about those when I get home. I am going to straight up ask for pain patches too until the spasms are under control.
So, I still have motility issues. I'm meeting with a new PCP this week as well so that I can actually get more refills on Phenergan (more than 2 refills at a time), ask about the patch, and talk to him about everything that's been going on. I know he can't help with GP or motility issues, but he can help me with the stress and coping with such things. I had been seeing another doctor as my PCP but he's been at the practice less and less, having his PA's cover it instead and some of them really aren't that bright. If I am paying for a visit and I haven't slept in three days because of vomiting - don't turn me away with a prescription for 12 phenergan tablets and a pat on the head. That was the last straw for me, I think. I'm in the process of getting ALL of my medical records together for the new doctor. He might be a bit overwhelmed. My file looks like 100 Stephen King novels packed into one.
TRDL; my liver enzymes are high and need to be tested in three months to rule out chronic liver disease. Severe acid reflux is causing me to keep vomiting everything up. The doctor gave me medicine and if it doesn't work, along with deep breathing, I will need to have a stomach operation wherein, basically, they wrap my stomach around itself as well as other testing.
We started off talking about my lab work. My labs were normal, except for my enzymes. The number was 108 and normal is around 40. That kind of bothers me because my liver enzymes were also really high in the hospital, in the 440s to 500s. He is going to recheck my labs in three months to rule out chronic liver disease, which sounds a bit scary. My white blood cell count was up, at 12.8. I don't have any explanation for that except for the throat infection I vomited myself into last week.
My 48 hour BRAVO TEST was positive. The test came back showing three different occasions for heartburn. The regurgitation I had did not correspond with reflux events on the Bravo meter device.
I want to address the heartburn thing. I know what heartburn feels like and I swear that I did NOT feel the heartburn while doing the Bravo test. I have been vomiting up stomach acid, but I thought that was because there was nothing left on my stomach. Am I just so used to the acid reflux that I can't tell when it's occurring now?
My esophagus looked normal and there wasn't any damage. I'm not sure how that happened because it was so swollen and sore last week. I still have issues swallowing and I have the bravo capsule attached to my esophagus until it falls off.
I have to manage this like GERD. I've tried Protonix, Pepcid, Prevacid, Prilosec, and Dexilant in the past to control acid reflux. So, the doctor called in some ACIPHEX to help control my symptoms. He told me to try this for three months. He also told me to learn DIAPHRAGMATIC DEEP BREATHING. Dr. Bouras said that will help me to help control the vomiting. I have to come back to the Mayo Clinic to meet with behavioral specialists to learn how to this technique but it will have to be approved by my insurance before I can schedule the appointment. But, the deep breathing will help me hold the food down.
If the medication does NOT work, then he will have to do surgery. He recommended a NISSEN FUNDOPLICATION.
The doctor also cleared me to start back on BENTYL. This is great news because my stomach spasms hurt SO much! This will help them subside. He did caution me to be careful about these types of medication because they can make gastric emptying even slower.
If I'm still having issues three months from now on the new PPI and with the deep breathing, he also mentioned doing a Sleuth Study which is a reflux study that isn't just about acid, but any kind of reflux. I'm sorry that I don't have a link for you but I can't find anything on the Internet about it. He also mentioned the Nissen, as I mentioned before. That would make it impossible for me to vomit and could create issues for me swallowing.
I also have severe constipation. Nothing goes down and everything comes back up so he suggested Milk of Magnesium at night. I've been doing that but I guess I'll up the dosage. He said that in some cases, severe constipation can lead to upper GI motility issues. I'm to take 2 - 4 tablespoons of Magnesium at bedtime and avoid any medications that could cause constipation.
He may eventually do rectal testing on me. Man, that sounds like fun! Kidding. Anyway, he said that even though your colon could be normal (mine was via a colonoscopy) that you can still have rectal issues. There are tests to see if the muscles are functioning properly and he would also check for any possible blockages. He also mentioned doing another test called the PELVIC FLOOR TEST. I had never heard of such a thing. It's a group of muscles that control your bladder and bowel movements and this test makes sure that group of muscles work properly.
I asked him if there was anything else I could take for the nausea because the Zofran is hit or miss and Phenergan, well, doesn't last that long. I think I'm building up a tolerance. he said that I could take SCOPOLAMINE patches, which you put behind your ear and wear for three days but they have the potential to make you sleepy. So, I'll ask my doctor about those when I get home. I am going to straight up ask for pain patches too until the spasms are under control.
So, I still have motility issues. I'm meeting with a new PCP this week as well so that I can actually get more refills on Phenergan (more than 2 refills at a time), ask about the patch, and talk to him about everything that's been going on. I know he can't help with GP or motility issues, but he can help me with the stress and coping with such things. I had been seeing another doctor as my PCP but he's been at the practice less and less, having his PA's cover it instead and some of them really aren't that bright. If I am paying for a visit and I haven't slept in three days because of vomiting - don't turn me away with a prescription for 12 phenergan tablets and a pat on the head. That was the last straw for me, I think. I'm in the process of getting ALL of my medical records together for the new doctor. He might be a bit overwhelmed. My file looks like 100 Stephen King novels packed into one.
TRDL; my liver enzymes are high and need to be tested in three months to rule out chronic liver disease. Severe acid reflux is causing me to keep vomiting everything up. The doctor gave me medicine and if it doesn't work, along with deep breathing, I will need to have a stomach operation wherein, basically, they wrap my stomach around itself as well as other testing.
Friday, August 17, 2012
Hospital Stay - Days 1 & 2
It started the night before last. I didn't sleep. I felt really nauseated and had this intense burning in my stomach that didn't quite feel like heartburn but I can't quite describe it. I couldn't even lay on my side, the pain was so intense. So, I decided to watch TV upstairs to not wake up my husband. While I was laying there, 5am rolled around. As it did, so did my stomach.
I ran to the bathroom and vomited. I noticed this dark black substance that almost looked like tar, in my stomach acid. It was blood. Now, I've vomited up blood before but it was usually a bright red color. This worried me because it was almost black. So, I called the GI practice and spoke with the doctor on call. He told me to try taking some pepto bismol and then wait until 9am to call the specialist I had been seeing for the Smart Pill.
And so, three stomach protests later, I called my regular GI doctor thinking that he could probably see me quicker. The nurse told me to go straight to the ER and that she would tell the doctor that I was on my way. So, I woke the husband up and headed for the ER.
... and because I had been vomited all morning without eating in the past few days, there was nothing left in my stomach so I couldn't vomit again for them to check for blood. I dry heaved like crazy, and still am. The ER doctor called my doctor and they decided to admit me. I really thought that they would give me fluids and send me home but my lab work had other plans.
My lipase is really high. My liver enzymes (the normal range is 30 to 40) are 300 to 400 and my blood pressure walking in was 180/117. I also had a slight fever 99.8 (it had been 101 the past two days). After telling my doctor about my lab work (which is the EXACT same issue I had in March - same numbers almost and everything), they decided it would be best if I could be monitored for a bit.
The doctor came in and told me about all of the lab results. He also explained to me about a procedure called an ERCP which would show him if I had stones or not. Even though I don't have a gallbladder anymore, I can still get liver stones. More information about ERCP HERE.
In addition to finding and removing stones, he also said that they are going to make a little incision into the sphincter that would relax the muscle so that the sphincter will release bile easily and help me with digestion. I am having the ERCP procedure on Monday. I will need to be monitored for 48 to 72 hours afterwards because many patients develop Pancreatitis.
Well, I hope this helps some. Today was interesting though. I asked for a Picc Line because I have such horrible veins. The only vein they were able to find for an IV site was the inside of my right wrist. The doctor in the ER was going to put it into my neck if the wrist didn't work.
When this hospital does a Picc Line, they use a tiny sonogram machine and insert the line. Then, a chest x-ray is taken and the Radiologist reads it to let them know that it's in the right place so that they can administer medication. Sounds simple, right?
Wrong!
My picc line went in at 11am (I had just taken my pain and anti-nausea medication at 10am). The chest x-ray was about 20 minutes after the picc line was placed. However, the nurse started to get REALLY upset because it was going on 5pm, and I hadn't had ANY medication. Thankfully, I have awesome friends who came to visit and kept me distracted from my stomach and vomiting the entire time. =)
Finally, the nurse came in and told me that the picc was a bit too far and was in the right atrium of my heart. So, the picc nurse had to come back in and pull it back into place. That was around 5:15pm. I finally got another chest x-ray and it was the same technician. He told me that he made the mistake and my x-ray fell through the cracks because he did about 20 chest x-rays in a row. He then proceeded to tell me how he likes to x-ray things in his spare time. He's x-rayed his iPhone, ipad, galaxy s, a campbell's soup can, and seashells. There are some really interesting people in this hospital.
The nurse last night, named Lora (yes, I am going to call her out on this blog because she was really horrible to me), really upset me and I will be writing a letter about her to the person in charge.
I guess she was mad that I made her work, I'm not sure. She treated me like I was a drug junkie last night because I couldn't sleep and wanted my pain medicine. The nurse just got angry with me. She asked what my pain level was on a scale of 1 to 10. I said 6. She snapped at me and asked if it ever went below a 6. I replied to her that if it did, I would answer with a number less than 6! My pain is intense, consistent, and makes me cry. Get off of my back and try to be a bit sympathetic.
This bothers me because I'm on the Oncology floor (it's the overflow floor for GI). If she treated ME this way, how does she treat cancer patients? That just really pissed me off. She wasn't a nice person. I hope I don't have to see her again while I'm here. Maybe I caught her while she was having a bad night, I don't know. I'm not a bad patient and I'm usually a good one but I wanted to take my IV line and strangle her with it. I was really angry. I hope that she's nicer to the other patients on this floor because if my grandfather had EVER been treated this way, I would have ripped that person a new asshole.
I had four friends come and see me today. I've gotten a lot of kind words on facebook and I know some really awesome people. Without their support, I would be extremely depressed. Thanks to all of you who read this blog and thanks to those of you who have responded to me and for the support. It really does mean a lot. I wasn't expecting this blog to be as popular as it is. I'm going to write another entry about Day 3 tomorrow. I hope to get some sleep tonight now that the picc line is in and the stupid IV pole won't yell at me every 5 minutes when I try to sleep. Having an IV in your wrist is horrible. >.<
My Picc Line.
I ran to the bathroom and vomited. I noticed this dark black substance that almost looked like tar, in my stomach acid. It was blood. Now, I've vomited up blood before but it was usually a bright red color. This worried me because it was almost black. So, I called the GI practice and spoke with the doctor on call. He told me to try taking some pepto bismol and then wait until 9am to call the specialist I had been seeing for the Smart Pill.
And so, three stomach protests later, I called my regular GI doctor thinking that he could probably see me quicker. The nurse told me to go straight to the ER and that she would tell the doctor that I was on my way. So, I woke the husband up and headed for the ER.
... and because I had been vomited all morning without eating in the past few days, there was nothing left in my stomach so I couldn't vomit again for them to check for blood. I dry heaved like crazy, and still am. The ER doctor called my doctor and they decided to admit me. I really thought that they would give me fluids and send me home but my lab work had other plans.
My lipase is really high. My liver enzymes (the normal range is 30 to 40) are 300 to 400 and my blood pressure walking in was 180/117. I also had a slight fever 99.8 (it had been 101 the past two days). After telling my doctor about my lab work (which is the EXACT same issue I had in March - same numbers almost and everything), they decided it would be best if I could be monitored for a bit.
The doctor came in and told me about all of the lab results. He also explained to me about a procedure called an ERCP which would show him if I had stones or not. Even though I don't have a gallbladder anymore, I can still get liver stones. More information about ERCP HERE.
In addition to finding and removing stones, he also said that they are going to make a little incision into the sphincter that would relax the muscle so that the sphincter will release bile easily and help me with digestion. I am having the ERCP procedure on Monday. I will need to be monitored for 48 to 72 hours afterwards because many patients develop Pancreatitis.
Well, I hope this helps some. Today was interesting though. I asked for a Picc Line because I have such horrible veins. The only vein they were able to find for an IV site was the inside of my right wrist. The doctor in the ER was going to put it into my neck if the wrist didn't work.
When this hospital does a Picc Line, they use a tiny sonogram machine and insert the line. Then, a chest x-ray is taken and the Radiologist reads it to let them know that it's in the right place so that they can administer medication. Sounds simple, right?
Wrong!
My picc line went in at 11am (I had just taken my pain and anti-nausea medication at 10am). The chest x-ray was about 20 minutes after the picc line was placed. However, the nurse started to get REALLY upset because it was going on 5pm, and I hadn't had ANY medication. Thankfully, I have awesome friends who came to visit and kept me distracted from my stomach and vomiting the entire time. =)
Finally, the nurse came in and told me that the picc was a bit too far and was in the right atrium of my heart. So, the picc nurse had to come back in and pull it back into place. That was around 5:15pm. I finally got another chest x-ray and it was the same technician. He told me that he made the mistake and my x-ray fell through the cracks because he did about 20 chest x-rays in a row. He then proceeded to tell me how he likes to x-ray things in his spare time. He's x-rayed his iPhone, ipad, galaxy s, a campbell's soup can, and seashells. There are some really interesting people in this hospital.
The nurse last night, named Lora (yes, I am going to call her out on this blog because she was really horrible to me), really upset me and I will be writing a letter about her to the person in charge.
I guess she was mad that I made her work, I'm not sure. She treated me like I was a drug junkie last night because I couldn't sleep and wanted my pain medicine. The nurse just got angry with me. She asked what my pain level was on a scale of 1 to 10. I said 6. She snapped at me and asked if it ever went below a 6. I replied to her that if it did, I would answer with a number less than 6! My pain is intense, consistent, and makes me cry. Get off of my back and try to be a bit sympathetic.
This bothers me because I'm on the Oncology floor (it's the overflow floor for GI). If she treated ME this way, how does she treat cancer patients? That just really pissed me off. She wasn't a nice person. I hope I don't have to see her again while I'm here. Maybe I caught her while she was having a bad night, I don't know. I'm not a bad patient and I'm usually a good one but I wanted to take my IV line and strangle her with it. I was really angry. I hope that she's nicer to the other patients on this floor because if my grandfather had EVER been treated this way, I would have ripped that person a new asshole.
I had four friends come and see me today. I've gotten a lot of kind words on facebook and I know some really awesome people. Without their support, I would be extremely depressed. Thanks to all of you who read this blog and thanks to those of you who have responded to me and for the support. It really does mean a lot. I wasn't expecting this blog to be as popular as it is. I'm going to write another entry about Day 3 tomorrow. I hope to get some sleep tonight now that the picc line is in and the stupid IV pole won't yell at me every 5 minutes when I try to sleep. Having an IV in your wrist is horrible. >.<
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