First off, thank you to everyone who has reached out to me in the last few days. I appreciate it more than you know!
I am doing better. I am feeling slightly better and my creatinine levels are improving. I am still not nearly where I need to be but forward progress is forward progress and for that I am thankful. I think it is best if I do this in a time line so that y'all can keep up with me.
I'll start off with some basic information you should know. Creatinine is a waste product in the blood that should be filtered out by the kidneys. The average creatinine level is 0.7 for a woman.
Wednesday at 12:00pm - I went to the family doctor. I had my blood drawn and my creatinine level was 2.56
Wednesday at 5:00pm - My mom and I went back to the doctor. I did an ultrasound of both of my kidneys but everything came out fine. My blood was drawn again and the creatinine level was 2.47. This confirmed that something was definitely wrong. At this point, I got fluids via IV at the after hours clinic next door to my doctor's office.
Thursday at 8:00am - I got my blood drawn for a third time in less than 24 hours. My creatinine level was 2.36.
Thursday at 2:30pm - My mom, my dad, and I went to a renal specialist. He has no idea what is causing this because all of my urine samples came back fine and so did my ultrasound but my creatinine level was still very high. He said at this point we will just wait it out and see if the levels continue to come down. I need to continue to drink fluids (currently I am drinking water and Sprite) and rest. On the way home from the renal specialist, I threw up (on the side of the road and not the car, thank goodness!). We texted the renal doctor (yes, we have my doctors' cell phone numbers) this information and he said that nausea is a symptom of renal failure. This was a little scary because it could mean that I was moving backwards. I continued to drink my fluids when I got home. As it turns out, all of the symptoms I was having this past week can be attributed to my acute kidney failure. My back pain (and its position) is a little bizarre but has lessened so could be somewhat related to my kidneys.
Friday at 8:00am - I had my blood drawn for the fourth time in 2 days. My creatinine level came back and it was 1.9. This is a large jump down, which is great! It is still high but we are making forward progress.
I will be going back to the renal specialist on Monday morning to have my blood drawn and my creatinine level tested again to see where I'm at. Thank you again for all the prayers and for checking in on me. Please keep the prayers coming!
Until next time,
A :)
Friday, October 31, 2014
Wednesday, October 29, 2014
You Can't Make This Sh*t Up
I hadn't planned on really updating too much before I actually went to Mayo but my medical issues decided otherwise. I have continued to have awful back pain since my last post on Friday. On Saturday, I woke up nauseous and my stomach was churning. This has persisted until today as well. Today I decided that I would finally go to my family doctor instead of sticking it out until we fly to Minnesota next Sunday. Thank goodness I went to the doctor! We ordered a CAT scan with contrast (but that has to be approved by insurance), blood work-up, and a urine sample. This took place at 12:30. I did the urine sample and blood work-up. I left the doctor and went pick up prescriptions for nausea, pain, and a muscle relaxer. I got back to the Theta house then decided I was going to take a nap around 3:15. Around 4, my little (sis) came in my room and I still have no idea what she was telling me. But I had about 20 missed calls from my mom, brother, and doctor. Finally, I woke up and called my brother and he said something was wrong with my kidneys and my mom was coming to pick me up to bring me back to the doctor. We got back to the doctor, I had an ultrasound and blood work done. The ultrasound was fine but the blood work was not. I am in acute renal failure. I had a liter of fluid given to me via IV. I am currently at home with my family and cats watching out for me. I will go back tomorrow morning to have my blood tested again. I will most likely wind up seeing a kidney specialist tomorrow whether the results come back improved or not. People have asked if the fluids have helped, but I don't feel any different than I did at 12 when I arrived at the doctor's office earlier today. So the answer to that question is no.
Shout out to my friends who got me flowers and a card tonight! I love y'all! I am keeping a positive attitude through all of this. My mom I laughed more tonight because you really can't make this sh*t up. Please keep me in your prayers over the next few days. I will keep y'all updated.
Until next time,
A :)
Shout out to my friends who got me flowers and a card tonight! I love y'all! I am keeping a positive attitude through all of this. My mom I laughed more tonight because you really can't make this sh*t up. Please keep me in your prayers over the next few days. I will keep y'all updated.
Until next time,
A :)
Friday, October 24, 2014
Volleyball, Pain, and Flights
So I was hoping to post about how one of my volleyball teams had won the championship, but neither did. :( No offense to my Wednesday night team but we were seeded 7th of 8 teams and had no chance. We lost the first game (21-18, which was much better than I expected). On the other hand, my Thursday night team was seeded 3rd of 8 teams and I thought we had a championship in the bag. We played well in our first two games but in the finals fell apart (25-12) against a team who was scrappy and could roll instead of just smashing the ball. If you win the championship, you get a tshirt and that is always my goal. I have played out at Mango's Volleyball (off Sherwood Forest) since the summer after 8th grade. That comes out to about 7.5 years (wow, I feel old). In my time out there, I have only won a championship twice. Although neither of my teams won a tshirt (yes, that is all I really care about), I am glad that I was able to play two nights a week this season. I am hoping to play two man in February next year, something that I have yet to really explore.
In my last post I talked about how my back was hurting and we didn't really know what was going on. Well last night my back was killing me while I was playing volleyball. It has hurt the last few weeks when I play but I haven't been in that much pain in a while. I may or may not (definitely did) have a sobbing meltdown in the car yesterday on my way home from volleyball. I am still in a good bit of pain today, but nothing I can't handle. I only have two more weeks until we fly out to Minnesota. I am holding out until then in hopes that the doctors there can tell me what's actually going on. I am not asking for pity or trying to complain (because honestly I hate when people complain); I am just posting to update everybody on what is going on. Also, it is very nice to get these things off my chest even if I am not telling it to someone face to face.
I do have a funny story to tell y'all about how my family is flying to Minnesota. We were supposed to leave Saturday, November 8th but guess who LSU plays in football that day? Alabama. At home. And anyone who knows me knows that I would never miss that game in Death Valley. So my parents and Lance are flying out on Saturday while I go to the game. I will drive to New Orleans Saturday night and stay at one of my best friend's house. Then we will wake up at 4:30/5:00am to get to the airport because my flight leaves at 7:30 in the morning on Sunday. Shout out to Sarah for being the best roomie eva!!
I want to send a huge thank you to everyone who is reading this blog. It has over 800 views in less than 3 days! I didn't realize that many people cared to read about how my life was going. Even if you don't talk to me or check in with me, know that I appreciate you just reading and keeping up with me. Also, if you ever have any questions/comments/concerns for me, please feel free to comment on here. I am always up for explaining or talking about things! That's all I've got for now!
Until next time,
A
In my last post I talked about how my back was hurting and we didn't really know what was going on. Well last night my back was killing me while I was playing volleyball. It has hurt the last few weeks when I play but I haven't been in that much pain in a while. I may or may not (definitely did) have a sobbing meltdown in the car yesterday on my way home from volleyball. I am still in a good bit of pain today, but nothing I can't handle. I only have two more weeks until we fly out to Minnesota. I am holding out until then in hopes that the doctors there can tell me what's actually going on. I am not asking for pity or trying to complain (because honestly I hate when people complain); I am just posting to update everybody on what is going on. Also, it is very nice to get these things off my chest even if I am not telling it to someone face to face.
I do have a funny story to tell y'all about how my family is flying to Minnesota. We were supposed to leave Saturday, November 8th but guess who LSU plays in football that day? Alabama. At home. And anyone who knows me knows that I would never miss that game in Death Valley. So my parents and Lance are flying out on Saturday while I go to the game. I will drive to New Orleans Saturday night and stay at one of my best friend's house. Then we will wake up at 4:30/5:00am to get to the airport because my flight leaves at 7:30 in the morning on Sunday. Shout out to Sarah for being the best roomie eva!!
I want to send a huge thank you to everyone who is reading this blog. It has over 800 views in less than 3 days! I didn't realize that many people cared to read about how my life was going. Even if you don't talk to me or check in with me, know that I appreciate you just reading and keeping up with me. Also, if you ever have any questions/comments/concerns for me, please feel free to comment on here. I am always up for explaining or talking about things! That's all I've got for now!
Until next time,
A
Tuesday, October 21, 2014
A Summary of My Life...in Medical Conditions
First off, I want to thank everyone who has reached out to me in the last few hours. The outpouring of kind words and prayers affect me in so many ways. I can't even believe the amount of people who have talked to me and checked in on me; I am just so thankful to all of you!
On to a summary of my life in medical conditions. This is gonna be long so just bear with me please. Back in 2003, I had a scope done because my stomach was hurting. I was pretty much self diagnosed with being fructose and lactose intolerant. I cut out milk and sugar and things improved. Something that the doctors found in the scope was that I had corn still undigested in my stomach that I had eaten the night before (just keep this in mind for later on). In sixth grade (2005-2006), there was a scoliosis examination at school in PE. A family friend did mine and said that she would have to call my mom just to get it checked out. Turns out that I had scoliosis and it was quite bad! I wore a brace at night for about 2.5 years. My back is still very curved but I never had to have surgery!
The summer before 9th grade (2008) my back was killing me and my family and volleyball coach thought I had a herniated disk. I went to my scoliosis doctor in New Orleans and had a MRI done. After that was done, we found out that I had an ovarian cyst that was 8.5 cm in diameter. We let it drain itself and things were fine. Then I had another one and I was put on pain killers. It went away but then I had a third one in February 2009. That's when I wanted something besides pain killers. At this point, I was a 14 year old who had been to the gynecologist more times than I wanted to admit. I was put on birth control and the cyst have yet to return. About a month later, I torn a ligament in my wrist playing volleyball and was in a long arm splint for 3 months. Did I mention it was my right arm which is my dominant arm? Well, it was! I got through that and moved on with my life. Sophomore year of high school I seemed to be sick every other week. My pediatrician diagnosed me with a range of things: sinus infection, bronchitis, a yeast infection, etc. Come the spring of that year, I was having serious heartburn. I was diagnosed with acid reflux and put on antacids. The heartburn continued so my pediatrician sent my to a gastroenterologist in Baton Rouge to help me. Well that summer my stomach started to hurt and it was quickly getting worse than the heartburn so I told my gastroenterologist to find out what was wrong with my stomach before we tried to fix the heartburn. My junior year of high school I seemed to be at a doctor's office at least once a week running some type of test. In November 2010, I was diagnosed with gastroparesis. This simply means that my stomach does not digest food in a timely manner. Normal people digest a meal in 1.5-2 hours where I take 8-10 hours to digest a meal. I had ridiculous stomach pains as well as headaches, leg pain, and lightheadedness on top of the heartburn.
This is where most of you know my story from. I went to two gastroenterologists in Baton Rouge who tried different regimes of medications that didn't work. Then I went on to another gastro doctor in New Orleans and he told me it was all in my head. I said and I quote, "That is a load of crap!" That was a very short visit. Next we went on to see a gastro at Texas Children's Hospital in Houston. It is now the summer of 2011. I went to Houston for a couple days a month for about 6 months. He tried a few more medications that didn't seem to work either. He said we could try injecting botox into the sphincter muscle at the bottom of my stomach to see if it would relieve some of my pain. He did tell us that it may or may not work. We tried it and it worked but only for a week. So the next month, we tried it again and it didn't work at all. After that we contacted my current doctor in Gainesville, FL at Shands at UF. It is now early December 2011. We had a few connections to the doctor and were able to get an appointment for the first week of January (it was a miracle to say the least). My mom, my nanny, and I went to Gainesville the first week of January to find out if I was a candidate for a temporary gastric stimulator. I call it a pacemaker because it is much easier for people to understand. When we got to Gainesville, the doctor said I was a great candidate for the temporary pacemaker which would then in turn let us know if I was a good candidate for the actual gastric stimulator. We went back the first week of February and put in the temporary pacemaker. It was a huge success! We stayed in Gainesville for about 5 days to make sure that everything worked the way it was supposed to. Now we only had to wait on insurance to approve the actual gastric stimulator that the doctor would have to implant. On February 21, 2012 (Mardi Gras day that year), I had a gastric stimulator implanted in my stomach. I woke up from surgery without the pain I once had. It was instantaneous. Although I had a boat load of pain from the where the doctors cut my skin and muscle, I no longer had the pain that I did before surgery. It took me probably 3 months until I was walking at a normal pace and almost a year until I was "back to normal." Over the course of my junior and senior years of high school I missed well over 50 days of school but graduated with a 4.26, something that I am very proud of.
I started LSU in the fall of 2012 and most of you have met me since then. I was and still am very open about everything that has happened in my past. My freshman year I still struggled with pain and how to manage having a foreign object in my body. Playing sand volleyball was tough but not something that I was willing to give up on because I had a new disease on my resume. I continue to play volleyball and I am even playing twice a week these days (finals are this week!!). Anyways, back to medical stuff. College has been pretty easy as far as medical needs although every now and then my stomach will hurt or vibrate. Yes, I can feel my pacemaker vibrate sometimes. Contrary to what you would think, my pacemaker does not help me digest food any faster but it does help with subsiding the pain and symptoms I was having. Back to having the corn still in my stomach in 3rd grade. I think I have always had gastroparesis, the symptoms just did not present themselves until I was a sophomore in high school. 95% of people will never know what caused gastroparesis and I am in that 95%. I have come off a significant amount of medications but I still take 6 pills a day which is small compared to the 22 I was taking only a few years ago. Again, college has been pretty smooth for me. I went for my 3 month check up for my pacemaker the summer before I started college and they told me I didn't have to come back for a whole year, which was amazing news! I went back the next summer (2013) and they told me I didn't have to go back for another two years! So I will head back to Gainesville this coming summer (2015) to do another check up. As for right now, the pacemaker will stay in my stomach for the rest of my life. The battery will have to be changed out in about 7 years but that will be an outpatient surgery and shouldn't be a big deal. I'll cross that bridge when I get there.
Summer 2014: In June, my back started to hurt really bad and it felt like the pain I had with my ovarian cyst almost 5 years ago. I went to my family doctor and had an ultrasound done and they didn't find a cyst. I did a urine sample and had a UTI, gross I know. I was put on some antibiotics but the pain in my back persisted. In July, I went to my family doctor again and I told her I wanted an ultrasound done and x-rays. I know my body really well at this point and know what I need. Nothing came back from either of those tests. We did another urine sample, nothing. So she said it must be a muscle strain. I didn't think that was it at the time and I still don't. I went to PT for about a month and a half and the pain subsided for a little while. In the last week it has come back full force. I have also had headaches almost everyday for a few months now.
Now on to my current situation. My brother was diagnosed with a syndrome called POTS last November at the Mayo Clinic in Minnesota and my parents and I think I have it as well. POTS stands for postural orthostatic tachycardia syndrome. This means that he does not have enough blood volume and his heart has to work overtime to get blood circulated through his body. It actually has a pretty simple solution. Drink a gallon of water a day, eat lots of salt, exercise 30 minutes a day, and take a beta blocker a few times a day. This may not seem simple to most of you but for me and everything I have been through this seems like an easy fix. With all of these problems arising again, my family decided that it would be best if I went to the Mayo Clinic and had a full work up done just like Lance (my little brother who is 17) did last year. Right now I am just holding out until I can get on a plane and fly to Minnesota. I don't know that I have ever been 100% well/healthy in my life and I am hoping that the doctors at Mayo can help get me there. Obviously, I know that I will never be 100% healthy but maybe one day I can feel that way.
I created this blog, not to ask for your pity but to update everyone on how I am doing over the next few weeks and while I am at Mayo. I hope to continue with the blog long after Mayo to keep everyone updated on my life and how I am doing. I want people to know that although I have multiple diseases, I am not letting that stop me from living my life. I had a couple years where I barely made it to school and back. Now that I have the opportunity to do things, I am doing everything I can get my hands on. It is one of the reasons I stay so busy and I wouldn't have it any other way. If you made it this far, consider it an accomplishment :). Thank you for reading! I am sending my love!
Until next time, A
P.S. I'm sorry if there are any grammatical errors
On to a summary of my life in medical conditions. This is gonna be long so just bear with me please. Back in 2003, I had a scope done because my stomach was hurting. I was pretty much self diagnosed with being fructose and lactose intolerant. I cut out milk and sugar and things improved. Something that the doctors found in the scope was that I had corn still undigested in my stomach that I had eaten the night before (just keep this in mind for later on). In sixth grade (2005-2006), there was a scoliosis examination at school in PE. A family friend did mine and said that she would have to call my mom just to get it checked out. Turns out that I had scoliosis and it was quite bad! I wore a brace at night for about 2.5 years. My back is still very curved but I never had to have surgery!
The summer before 9th grade (2008) my back was killing me and my family and volleyball coach thought I had a herniated disk. I went to my scoliosis doctor in New Orleans and had a MRI done. After that was done, we found out that I had an ovarian cyst that was 8.5 cm in diameter. We let it drain itself and things were fine. Then I had another one and I was put on pain killers. It went away but then I had a third one in February 2009. That's when I wanted something besides pain killers. At this point, I was a 14 year old who had been to the gynecologist more times than I wanted to admit. I was put on birth control and the cyst have yet to return. About a month later, I torn a ligament in my wrist playing volleyball and was in a long arm splint for 3 months. Did I mention it was my right arm which is my dominant arm? Well, it was! I got through that and moved on with my life. Sophomore year of high school I seemed to be sick every other week. My pediatrician diagnosed me with a range of things: sinus infection, bronchitis, a yeast infection, etc. Come the spring of that year, I was having serious heartburn. I was diagnosed with acid reflux and put on antacids. The heartburn continued so my pediatrician sent my to a gastroenterologist in Baton Rouge to help me. Well that summer my stomach started to hurt and it was quickly getting worse than the heartburn so I told my gastroenterologist to find out what was wrong with my stomach before we tried to fix the heartburn. My junior year of high school I seemed to be at a doctor's office at least once a week running some type of test. In November 2010, I was diagnosed with gastroparesis. This simply means that my stomach does not digest food in a timely manner. Normal people digest a meal in 1.5-2 hours where I take 8-10 hours to digest a meal. I had ridiculous stomach pains as well as headaches, leg pain, and lightheadedness on top of the heartburn.
This is where most of you know my story from. I went to two gastroenterologists in Baton Rouge who tried different regimes of medications that didn't work. Then I went on to another gastro doctor in New Orleans and he told me it was all in my head. I said and I quote, "That is a load of crap!" That was a very short visit. Next we went on to see a gastro at Texas Children's Hospital in Houston. It is now the summer of 2011. I went to Houston for a couple days a month for about 6 months. He tried a few more medications that didn't seem to work either. He said we could try injecting botox into the sphincter muscle at the bottom of my stomach to see if it would relieve some of my pain. He did tell us that it may or may not work. We tried it and it worked but only for a week. So the next month, we tried it again and it didn't work at all. After that we contacted my current doctor in Gainesville, FL at Shands at UF. It is now early December 2011. We had a few connections to the doctor and were able to get an appointment for the first week of January (it was a miracle to say the least). My mom, my nanny, and I went to Gainesville the first week of January to find out if I was a candidate for a temporary gastric stimulator. I call it a pacemaker because it is much easier for people to understand. When we got to Gainesville, the doctor said I was a great candidate for the temporary pacemaker which would then in turn let us know if I was a good candidate for the actual gastric stimulator. We went back the first week of February and put in the temporary pacemaker. It was a huge success! We stayed in Gainesville for about 5 days to make sure that everything worked the way it was supposed to. Now we only had to wait on insurance to approve the actual gastric stimulator that the doctor would have to implant. On February 21, 2012 (Mardi Gras day that year), I had a gastric stimulator implanted in my stomach. I woke up from surgery without the pain I once had. It was instantaneous. Although I had a boat load of pain from the where the doctors cut my skin and muscle, I no longer had the pain that I did before surgery. It took me probably 3 months until I was walking at a normal pace and almost a year until I was "back to normal." Over the course of my junior and senior years of high school I missed well over 50 days of school but graduated with a 4.26, something that I am very proud of.
I started LSU in the fall of 2012 and most of you have met me since then. I was and still am very open about everything that has happened in my past. My freshman year I still struggled with pain and how to manage having a foreign object in my body. Playing sand volleyball was tough but not something that I was willing to give up on because I had a new disease on my resume. I continue to play volleyball and I am even playing twice a week these days (finals are this week!!). Anyways, back to medical stuff. College has been pretty easy as far as medical needs although every now and then my stomach will hurt or vibrate. Yes, I can feel my pacemaker vibrate sometimes. Contrary to what you would think, my pacemaker does not help me digest food any faster but it does help with subsiding the pain and symptoms I was having. Back to having the corn still in my stomach in 3rd grade. I think I have always had gastroparesis, the symptoms just did not present themselves until I was a sophomore in high school. 95% of people will never know what caused gastroparesis and I am in that 95%. I have come off a significant amount of medications but I still take 6 pills a day which is small compared to the 22 I was taking only a few years ago. Again, college has been pretty smooth for me. I went for my 3 month check up for my pacemaker the summer before I started college and they told me I didn't have to come back for a whole year, which was amazing news! I went back the next summer (2013) and they told me I didn't have to go back for another two years! So I will head back to Gainesville this coming summer (2015) to do another check up. As for right now, the pacemaker will stay in my stomach for the rest of my life. The battery will have to be changed out in about 7 years but that will be an outpatient surgery and shouldn't be a big deal. I'll cross that bridge when I get there.
Summer 2014: In June, my back started to hurt really bad and it felt like the pain I had with my ovarian cyst almost 5 years ago. I went to my family doctor and had an ultrasound done and they didn't find a cyst. I did a urine sample and had a UTI, gross I know. I was put on some antibiotics but the pain in my back persisted. In July, I went to my family doctor again and I told her I wanted an ultrasound done and x-rays. I know my body really well at this point and know what I need. Nothing came back from either of those tests. We did another urine sample, nothing. So she said it must be a muscle strain. I didn't think that was it at the time and I still don't. I went to PT for about a month and a half and the pain subsided for a little while. In the last week it has come back full force. I have also had headaches almost everyday for a few months now.
Now on to my current situation. My brother was diagnosed with a syndrome called POTS last November at the Mayo Clinic in Minnesota and my parents and I think I have it as well. POTS stands for postural orthostatic tachycardia syndrome. This means that he does not have enough blood volume and his heart has to work overtime to get blood circulated through his body. It actually has a pretty simple solution. Drink a gallon of water a day, eat lots of salt, exercise 30 minutes a day, and take a beta blocker a few times a day. This may not seem simple to most of you but for me and everything I have been through this seems like an easy fix. With all of these problems arising again, my family decided that it would be best if I went to the Mayo Clinic and had a full work up done just like Lance (my little brother who is 17) did last year. Right now I am just holding out until I can get on a plane and fly to Minnesota. I don't know that I have ever been 100% well/healthy in my life and I am hoping that the doctors at Mayo can help get me there. Obviously, I know that I will never be 100% healthy but maybe one day I can feel that way.
I created this blog, not to ask for your pity but to update everyone on how I am doing over the next few weeks and while I am at Mayo. I hope to continue with the blog long after Mayo to keep everyone updated on my life and how I am doing. I want people to know that although I have multiple diseases, I am not letting that stop me from living my life. I had a couple years where I barely made it to school and back. Now that I have the opportunity to do things, I am doing everything I can get my hands on. It is one of the reasons I stay so busy and I wouldn't have it any other way. If you made it this far, consider it an accomplishment :). Thank you for reading! I am sending my love!
Until next time, A
P.S. I'm sorry if there are any grammatical errors
My First Blog Post!!
Hey y'all! It's Adrienne here. This is my blog so that you can keep up with my medical life as well as my regular life too! I will be headed to the Mayo Clinic in Minnesota the week of November 10th to run lots of tests because I don't know that I have ever been 100% "well" in my life and we (my family) want to get me there. I will make a post in the next few days to give a summary of my medical history so y'all know where I'm coming from.
Until next time :)
-A
Until next time :)
-A
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