17 weeks... and still going
Pressure: 11 in the right 22 in the left - on Wednesday night
10 in the right, 18 in the left - on Thursday
Vision: Sucks... still can't see the Big E, did end up seeing the beg 'E' with pinholes (squinting)
Magnifier: Still on 4, but could almost drop down to 3, strains my eyes a little too much.
Retina: Attached
Current Doses of Medicine: 30 mg of Prednisone, 2000 mg Cellcept, 2 drops of steriod eye drops.
Apt. Summary:
After a very eventful day on Wednesday (see information after this apt summary), I saw my doctors. I was very scared that my retina had detached because of what had happened on Wednesday. After my doctors saw my pictures, they came the conclusion I was attached still and that the fluid is not getting any better, but is not getting any worse either. They decided that the Cellcept is not working. With it not working and what I was dealing with, they decided to take me off of it. They said they are just going to keep taking me off of Prednisone and see what happens, not much else they can do right now because they are not sure what it happening. So, all in all, I am stable and we are just waiting to see what happens. Will see my doctors in two weeks.
Summary of Changes:
Reduce Prednisone to 20mg for a week, then reduce by 5 mg each week until off.
Discontinue Cellcept
Reduce steriod eye drops to 1 time a day for a week, then go off of them.
^^^^^^^Wednesday and Thursday Summary^^^^^^^
On Wednesday, I work up at 4 am hungry, so I ate a bagel. At 5 am, my stomach started to bother me, so I took one of my stomach pills thinking it was just my reflux, and went to bed. Woke up at 6 feeling terrible. Tired taking my medicine at around 6:30, which wasn't very good. By 7:30 I was vomiting. After 1 round of vomiting, we took my temperature and it was around 99 degrees. I took a shower and tried to rest. Ended up getting the chills and still felt terrible. At around 8 am I forced myself to be sick to try and feel better. We took my temperature shortly there after and it was 101 degrees. At 8:30 am my temperature was up to 102.1, and by 9 am it was up to 102.8, so we decided to rush me up to OHSU hospitals ER. We got up there at around 9:30 am. My temperature was around 102.1. They took me back, and put in an IV for IV fluids. I ended up taking a total of 3 bags of IV fluids. It took 2 before I was even able to give them a urine sample. While I was int he ER my heart rate at first was around 135, not good. It also seemed like every time my bag of fluids would run out, I would spike a fever again, it seemed like it was running around 99 while on fluids. They took lots of blood to see what was going on. My potassium was very low, 2.3 (they like tit between 3.5 and 5). They eventually put me on IV potassium and had me on cardiac monitors because my heart rate at jumped to between 150 and 155. I had a chest Xray and a EKG which both came out normal. I could not take my steriods that morning, so they gave me steriods in my IV... which seemed to bring down my heart rate to between 110 and 115 (still not the best but better). I was given IV anti nausea's and could finally hold down Tylenol. The ER doctor was not totally sure what was going on but he thought it was a combination of my immune suppressive therapy drugs and probably the stomach flu. He said in a normal situation, he would just send me home with some anti nausea medicine and be done with it, but because I am on immune suppressive therapy drugs he wanted me admitted for observation.
I was admitted into OHSU hospital at around 6pm. By this point I was feeling much better. My temperature was around 99 again and seeming to stay stable. My stomach was feeling better, I was able to eat some crackers. After they admitted me, and I was questioned by many doctors, I was finally able to take in chicken broth and diet sprite... not the best, but OK. Opthomology came on that evening to look at my eyes because I was scared with the vomiting I had detached again. They said at that point things looked good, but they would still want me to see my doctors the next day for my scheduled apt.
On Thursday, they told me I could go see my eye doctors and make sure that was all OK, and to see if they wanted any changes done to my medicine. What a mes it was getting over there. They kept saying my apt was at 8:30, when I knew it was at 8 am. The person with the wheel chair stood outside my room for I don't know how long "texting". I got over to the eye doctors at around 8:30. When I got there, the receptionist, my doctor, and my doctor's assistant were all at the front desk. The assistant was on the phone trying to find me in the hospital, they knew I was admitted, but was not told I was coming to my apt and was not sure where I was at and what was going on. They were going to find me and come to my room.
After my apt, we went back to my room, John took me not transport, and hung out there for a while. I was not allowed to eat yet, and I was starving, until the doctor came in to OK my order for solid foods. The doctor finally did come in and change my order for food, so we could order food, but I did not eat until after 2pm. I did eat and it stayed down fine. After I ate they told me that had to call in Infectious diseases so they could come in and take a look, being the high fever and my immune suppression. After they came in and talked with me it came to the conclusion that it was a mix between my immune suppression and either the stomach flu or food poisoning. I was released at around 4pm and was very happy to get out of there.
So far I have eaten fine, my stomach feels a little upset, but between my acid reflux and what I just went though, I would expect that. I am taking my stomach pills more often just until my stomach becomes less irritated. We were supposed to go to CA this week, but we canceled it due to this whole thing. Disappointing for Chrissy, but hopefully we will be able to do something fun for her this week. I was told to follow up with my eye doctors and if the fever comes around again to come back up.
10 in the right, 18 in the left - on Thursday
Vision: Sucks... still can't see the Big E, did end up seeing the beg 'E' with pinholes (squinting)
Magnifier: Still on 4, but could almost drop down to 3, strains my eyes a little too much.
Retina: Attached
Current Doses of Medicine: 30 mg of Prednisone, 2000 mg Cellcept, 2 drops of steriod eye drops.
Apt. Summary:
After a very eventful day on Wednesday (see information after this apt summary), I saw my doctors. I was very scared that my retina had detached because of what had happened on Wednesday. After my doctors saw my pictures, they came the conclusion I was attached still and that the fluid is not getting any better, but is not getting any worse either. They decided that the Cellcept is not working. With it not working and what I was dealing with, they decided to take me off of it. They said they are just going to keep taking me off of Prednisone and see what happens, not much else they can do right now because they are not sure what it happening. So, all in all, I am stable and we are just waiting to see what happens. Will see my doctors in two weeks.
Summary of Changes:
Reduce Prednisone to 20mg for a week, then reduce by 5 mg each week until off.
Discontinue Cellcept
Reduce steriod eye drops to 1 time a day for a week, then go off of them.
^^^^^^^Wednesday and Thursday Summary^^^^^^^
On Wednesday, I work up at 4 am hungry, so I ate a bagel. At 5 am, my stomach started to bother me, so I took one of my stomach pills thinking it was just my reflux, and went to bed. Woke up at 6 feeling terrible. Tired taking my medicine at around 6:30, which wasn't very good. By 7:30 I was vomiting. After 1 round of vomiting, we took my temperature and it was around 99 degrees. I took a shower and tried to rest. Ended up getting the chills and still felt terrible. At around 8 am I forced myself to be sick to try and feel better. We took my temperature shortly there after and it was 101 degrees. At 8:30 am my temperature was up to 102.1, and by 9 am it was up to 102.8, so we decided to rush me up to OHSU hospitals ER. We got up there at around 9:30 am. My temperature was around 102.1. They took me back, and put in an IV for IV fluids. I ended up taking a total of 3 bags of IV fluids. It took 2 before I was even able to give them a urine sample. While I was int he ER my heart rate at first was around 135, not good. It also seemed like every time my bag of fluids would run out, I would spike a fever again, it seemed like it was running around 99 while on fluids. They took lots of blood to see what was going on. My potassium was very low, 2.3 (they like tit between 3.5 and 5). They eventually put me on IV potassium and had me on cardiac monitors because my heart rate at jumped to between 150 and 155. I had a chest Xray and a EKG which both came out normal. I could not take my steriods that morning, so they gave me steriods in my IV... which seemed to bring down my heart rate to between 110 and 115 (still not the best but better). I was given IV anti nausea's and could finally hold down Tylenol. The ER doctor was not totally sure what was going on but he thought it was a combination of my immune suppressive therapy drugs and probably the stomach flu. He said in a normal situation, he would just send me home with some anti nausea medicine and be done with it, but because I am on immune suppressive therapy drugs he wanted me admitted for observation.
I was admitted into OHSU hospital at around 6pm. By this point I was feeling much better. My temperature was around 99 again and seeming to stay stable. My stomach was feeling better, I was able to eat some crackers. After they admitted me, and I was questioned by many doctors, I was finally able to take in chicken broth and diet sprite... not the best, but OK. Opthomology came on that evening to look at my eyes because I was scared with the vomiting I had detached again. They said at that point things looked good, but they would still want me to see my doctors the next day for my scheduled apt.
On Thursday, they told me I could go see my eye doctors and make sure that was all OK, and to see if they wanted any changes done to my medicine. What a mes it was getting over there. They kept saying my apt was at 8:30, when I knew it was at 8 am. The person with the wheel chair stood outside my room for I don't know how long "texting". I got over to the eye doctors at around 8:30. When I got there, the receptionist, my doctor, and my doctor's assistant were all at the front desk. The assistant was on the phone trying to find me in the hospital, they knew I was admitted, but was not told I was coming to my apt and was not sure where I was at and what was going on. They were going to find me and come to my room.
After my apt, we went back to my room, John took me not transport, and hung out there for a while. I was not allowed to eat yet, and I was starving, until the doctor came in to OK my order for solid foods. The doctor finally did come in and change my order for food, so we could order food, but I did not eat until after 2pm. I did eat and it stayed down fine. After I ate they told me that had to call in Infectious diseases so they could come in and take a look, being the high fever and my immune suppression. After they came in and talked with me it came to the conclusion that it was a mix between my immune suppression and either the stomach flu or food poisoning. I was released at around 4pm and was very happy to get out of there.
So far I have eaten fine, my stomach feels a little upset, but between my acid reflux and what I just went though, I would expect that. I am taking my stomach pills more often just until my stomach becomes less irritated. We were supposed to go to CA this week, but we canceled it due to this whole thing. Disappointing for Chrissy, but hopefully we will be able to do something fun for her this week. I was told to follow up with my eye doctors and if the fever comes around again to come back up.
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