We made it to Wisconsin! And in one piece I must add!
Before I let you know what's goin' on, I'll update you from where I last left off.
My PA's office was supposed to mail us a hard copy of results and dictation from our physicals to take with us to Wisconsin just in case something happened and Dr. Chiang's office didn't recieve them or lost them. After they hadn't arrived by Friday, my mom called the office to see what was going on. They told her that they had a copy of everything if she wanted to pick it up but I needed to get my blood redrawn because they didn't get enough blood the first time. So I went to the lab at the hospital and got my blood drawn. Usually we don't wait for results, but mom had explained the situation and they ran the blood and I was able to leave with results in hand.
Sunday was a good day. I had lots to get done, but I did it. I finished school & packing. I had youth group, which was great for distracting my mind. I was given a sack of snacks for Justin & I and a book. I'm so thankful for my church family - they're SO nice and caring.
The flight to Milwaukee was decent. I did end up not feeling well on the last flight, luckily I was able to sleep, but the plane was SO cold! We checked into our hotel then went to the grocery store and bought groceries that will hopefully last us the rest of our stay.
This morning we met with Dr. Chiang. We arrived early because we took a taxi and didn't know how long it would take to get there. We were about a 1/2 hour early and were taken back for our appointments after waiting about 15 minutes. First Dr. Chiang examined each of us and then we were taken back to a conference room and he discussed the surgery with us. He told us that there were complications that could go wrong and what would happen if they did happen. I feel that he's very competent to do the surgery and he's also very nice.
Laster this afternoon, we met with Dr. Kelly, the endocrinologist. The only reason we met with him was just in case something goes wrong in surgery or in the hospital. Truthfully, I didn't care for him at all. He didn't directly say it, but he made it sound as if we were making the wrong decision and should wait until a better treatment comes out. Thankfully he's not allowed to say whether or not we can have the surgery, because if he could, I doubt that we'd be having it.
My surgery got moved up (or is it down?) from 8:30 to 7:30 tomorrow morning. That means I have to check in at 5:30 and wake up SUPER early.
Please keep my family and I in your prayers tomorrow.
-Jessica
Tuesday, May 5, 2009
Monday, April 27, 2009
One Week
In 168 hours, I'll be sitting in a hotel room, in Wisconsin 875 miles from here. I'll probably be scared out of my mind. I know it's something that needs done, but sometimes you just have to do what you've gotta do. I know that I'll get through it though, I'll be strong. I need to fight this battle for myself. Okay, I'll just stop saying things like that because it's about to make me cry.
Last week we got a message on the answering machine saying that my mom needed to call and make me a follow-up appointment. Weird! It was just a physical that I had, why would there be a need for a follow-up. When my mom called to make the appointment, she asked what it was for. She actually ended up talking to my PA and he said that it was because my bloodsugar was sky high. Since my PA is really nice and willing to work with us (and not to mention that he knows practically zip about what's wrong with us - I mean, he's no expert on it, and we don't expect him to be, but he listens and knows that mom knows what she's talking about), my mom kindly explained that most likely it was the Cushing's that was causing the high bloodsugar and it would most likely go away after surgery so she asked if we could wait until later to schedule it. Of course, he said that would be fine. So probably in a few months I'll go see him and see what's up with my bloodsugar.
I have lots to get done before we leave, and 168 hours and counting to get it done. YIKES!
-Jessica
Last week we got a message on the answering machine saying that my mom needed to call and make me a follow-up appointment. Weird! It was just a physical that I had, why would there be a need for a follow-up. When my mom called to make the appointment, she asked what it was for. She actually ended up talking to my PA and he said that it was because my bloodsugar was sky high. Since my PA is really nice and willing to work with us (and not to mention that he knows practically zip about what's wrong with us - I mean, he's no expert on it, and we don't expect him to be, but he listens and knows that mom knows what she's talking about), my mom kindly explained that most likely it was the Cushing's that was causing the high bloodsugar and it would most likely go away after surgery so she asked if we could wait until later to schedule it. Of course, he said that would be fine. So probably in a few months I'll go see him and see what's up with my bloodsugar.
I have lots to get done before we leave, and 168 hours and counting to get it done. YIKES!
-Jessica
Thursday, April 23, 2009
I Don't Feel Well
Blech. Today I don't feel well at all. Well actually I felt okay until about 1, then I started getting a headache, felt really tired, and started to get some abdominal pain. I would really like to get some schoolwork done as I only have one class to finish. But I just can't, my brain just can't think clearly. Colors don't seem to be the same either, everything is so dull. I tried to take a nap earlier, but I just couldn't fall asleep. Hopefully I'll start feeling better later so I can tackle my school work.
-Jessica
-Jessica
Friday, April 17, 2009
Physical
Today I had my physical, chest x-ray, and bloodwork done for my BLA. Everything went well, my PA said that my chest x-ray looked good, and I'm assuming that all of my bloodwork will be fine as well. He said that they'd fax the results to Dr. Chiang on Monday, but would also mail us a hard copy of everything to take with us just in case something happens to the copy that they fax.
Wow, in about two weeks I'll be starting to pack to go to Wisconsin. This is all becoming too real. We picked up our medic alert bracelets from the jewelry store today. They look great!
-Jessica
Wow, in about two weeks I'll be starting to pack to go to Wisconsin. This is all becoming too real. We picked up our medic alert bracelets from the jewelry store today. They look great!
-Jessica
Thursday, April 16, 2009
Medic Alert Bracelet
My medic alert bracelet arrived in the mail today. Yay!
Justin and I got the same bracelets. Mom let me pick them out. I chose this one because it would be noticeable by the medics, yet it doesn't scream "Look at me! I'm a medic alert bracelet!" Later on, once I have more money and have a good idea of what my wrist size is (it may get smaller) I want to get this one. The IDs are interchangeable, so I just need one ID and can put it on another bracelet. Either tomorrow or next Monday, we'll probably take them to the jewelry store to get them engraved as we're closing in on
having only 2 weeks left before we leave.
Later today, I should finish up my English class, leaving me with only 3 more classes to finish before I leave. My counselor e-mailed my teachers for me to see if they were willing to shorten my work load for me. I got an e-mail from my P.E. teacher saying that a previous teacher already took out a lot of the material so she wasn't going to take anything out. But that's fine with me since I already finished P.E.:).
Tomorrow afternoon I have an appointment with my PA to get a physical, some blood drawn, and a chest x-ray.
-Jessica
Justin and I got the same bracelets. Mom let me pick them out. I chose this one because it would be noticeable by the medics, yet it doesn't scream "Look at me! I'm a medic alert bracelet!" Later on, once I have more money and have a good idea of what my wrist size is (it may get smaller) I want to get this one. The IDs are interchangeable, so I just need one ID and can put it on another bracelet. Either tomorrow or next Monday, we'll probably take them to the jewelry store to get them engraved as we're closing in on having only 2 weeks left before we leave.Later today, I should finish up my English class, leaving me with only 3 more classes to finish before I leave. My counselor e-mailed my teachers for me to see if they were willing to shorten my work load for me. I got an e-mail from my P.E. teacher saying that a previous teacher already took out a lot of the material so she wasn't going to take anything out. But that's fine with me since I already finished P.E.:).
Tomorrow afternoon I have an appointment with my PA to get a physical, some blood drawn, and a chest x-ray.
-Jessica
Tuesday, April 14, 2009
The Countdown Is On
Well, we leave for Wisconsin 3 weeks from yesterday, meet with Dr. Chiang and Dr. Kelley (the endocrinologist) 3 weeks from today, and have surgery 3 weeks from tomorrow. It's going to be here before we know it. I have a lot that I need/want to get done before we leave. For sure I'd love to have my room cleaned, that's a must. I also need to get my school work finished. I have 2 almost 3 of my 6 classes finished. That shouldn't be too hard to do. I'd also like to clean out my car. I'm guessing that all of it will get done, I hope.
I'm still taking 600 mgs of Keto a day. It seems to be getting better. I used to get sick every Monday night, but that hasn't happened for two weeks. I've also been able to move my belt two holes in, although I haven't seen any weight loss. My period also returned, which I haven't had for about a year.
Last week my mom ordered my Medic Alert bracelet. It should arrive sometime this week. It's not my first choice of a Medic Alert bracelet, but my mom said that I couldn't get the one I wanted until after my surgery. Once they come in, we'll take them to the jewelry store to get them engraved.
On Friday I have an appointment to get my physical, bloodwork, and a chest x-ray done. Other than that, we mostly just have to pack before we leave.
-Jessica
I'm still taking 600 mgs of Keto a day. It seems to be getting better. I used to get sick every Monday night, but that hasn't happened for two weeks. I've also been able to move my belt two holes in, although I haven't seen any weight loss. My period also returned, which I haven't had for about a year.
Last week my mom ordered my Medic Alert bracelet. It should arrive sometime this week. It's not my first choice of a Medic Alert bracelet, but my mom said that I couldn't get the one I wanted until after my surgery. Once they come in, we'll take them to the jewelry store to get them engraved.
On Friday I have an appointment to get my physical, bloodwork, and a chest x-ray done. Other than that, we mostly just have to pack before we leave.
-Jessica
Monday, April 6, 2009
It's Happening!
Oh gosh, I can't believe this is really happening. Just about everything is finalized for our trip to Wisconsin.
Today I sat with my mom while she booked our flights and our hotel. We're flying Delta Airlines, which none of us have ever flown. (Through medical trips and my fabulous trips for Girl Scouts, I've become quite acquainted with flying, but have never flown with Delta.) On our way to Wisconsin, we have about an hour layover in Detroit, MI and on the way back, we have about another layover in Minneapolis, MN. I'm somewhat excited about that because with this trip, I'll be adding 3 more states to my list of states that I've been in (even if it is just an airport:P). Overall, our trip will span 5 states: we'll drive from Kansas to Colorado to fly, then we'll have layovers in Michigan and Minnesota and most of the trip we'll be in Wisconsin (11 long days to be precise).
While in Milwaukee, we'll be staying at Homestead Studio Suites in Brookfield. It's part of the Extended Stay hotel chain. We stayed at an Extended Stay Deluxe while in Houston last May and liked it a lot. These hotels are designed for people staying in an area for a long amount of time. In each room, there is a tiny kitchen with cookware, plates, and utensils. It wasn't as convenient in Houston because we spent more time at the hospital than at the hotel, but this time we'll only be in the hospital for about a day, therefore making this a logical choice. We won't have to eat out every meal.
We'll be in Wisconsin for 11 days. Probably 9 or 10 of those days we'll be stuck in a hotel. I'm assuming that it's going to get very boring. The other day I was walking around the electronics department when I saw that they had portable DVD players for $49.99! I got it so I'll be able to entertain myself while in Wisconsin. I also bought a lot of movies to go with it! I got: The Sisterhood of the Traveling Pants 2, Facing the Giants, The Pursuit of Happyness, The Devil Wears Prada, The Clique, and the first season of House, MD. I'm also taking all of my other movies as well - I'm sure that it will help keep me entertained.
Today Debbie from Dr. Chiang's office called and gave us the times of our pre-op appointments. The appointment with Dr. Chiang is in the morning on Tuesday and the appointment with Dr. Kelley (the endocrinologist) is later that afternoon. My surgery is at 8 or 8:45 Wednesday morning but we need to be at the hospital at 6.
Now that all of these things are set in place, I should probably get to work on my school work. Yikes!
Today I sat with my mom while she booked our flights and our hotel. We're flying Delta Airlines, which none of us have ever flown. (Through medical trips and my fabulous trips for Girl Scouts, I've become quite acquainted with flying, but have never flown with Delta.) On our way to Wisconsin, we have about an hour layover in Detroit, MI and on the way back, we have about another layover in Minneapolis, MN. I'm somewhat excited about that because with this trip, I'll be adding 3 more states to my list of states that I've been in (even if it is just an airport:P). Overall, our trip will span 5 states: we'll drive from Kansas to Colorado to fly, then we'll have layovers in Michigan and Minnesota and most of the trip we'll be in Wisconsin (11 long days to be precise).
While in Milwaukee, we'll be staying at Homestead Studio Suites in Brookfield. It's part of the Extended Stay hotel chain. We stayed at an Extended Stay Deluxe while in Houston last May and liked it a lot. These hotels are designed for people staying in an area for a long amount of time. In each room, there is a tiny kitchen with cookware, plates, and utensils. It wasn't as convenient in Houston because we spent more time at the hospital than at the hotel, but this time we'll only be in the hospital for about a day, therefore making this a logical choice. We won't have to eat out every meal.
We'll be in Wisconsin for 11 days. Probably 9 or 10 of those days we'll be stuck in a hotel. I'm assuming that it's going to get very boring. The other day I was walking around the electronics department when I saw that they had portable DVD players for $49.99! I got it so I'll be able to entertain myself while in Wisconsin. I also bought a lot of movies to go with it! I got: The Sisterhood of the Traveling Pants 2, Facing the Giants, The Pursuit of Happyness, The Devil Wears Prada, The Clique, and the first season of House, MD. I'm also taking all of my other movies as well - I'm sure that it will help keep me entertained.
Today Debbie from Dr. Chiang's office called and gave us the times of our pre-op appointments. The appointment with Dr. Chiang is in the morning on Tuesday and the appointment with Dr. Kelley (the endocrinologist) is later that afternoon. My surgery is at 8 or 8:45 Wednesday morning but we need to be at the hospital at 6.
Now that all of these things are set in place, I should probably get to work on my school work. Yikes!
Friday, March 27, 2009
Postponed
Agh. I was really hoping that today we'd get a surgery date. Of course I was hoping that we'd get one yesterday. Well, now I have to wait until Tuesday. The lady just called mom to let her know that she hadn't forgotten about us and that she needed to discuss with Dr. Chiang when we could get fit in because it would require 2 surgeries in one day (which I guess isn't the norm, but he only does these on Wednesdays and they said that they'd work it out so we wouldn't have to stay forever in Wisconsin). So she said that she'd probably call on Tuesday to set up a date, or something like that. She's going to see if April 22nd or 29th would work for him, but if not then we might be looking into May to have the surgeries. Oh boy, I guess I just have longer to worry/get anxious/stress about this.
Got My Meds!
No calls from Wisconsin yet, they'll probably come this afternoon.
This morning my mom picked up our prescriptions from the pharmacy. I got three bottles of pills and an emergency injectable. I got Hydrocortisone (also referred to as Cortef or Hydro) in 5 mg tablets for my afternoon dose and in 20 mg tablets for my morning dose. I don't think I'll always be at 20mg/5mg, but that's where Dr. Friedman is starting me at. Actually, that's what he's having us leave the hospital at -but the doctors at the hospital might think differently, I don't know. I also got a bottle of 0.1 mg pills of Fludrocortisone which is what people also refer to as Florinef. It is used to treat low levels of corticosteroid hormones (or at least that's what the insert about it says). Lastly I got a 100mg ACT-O-VIAL of Solu-Cortef with a syringe. I still have one from my last surgery, but now I have two, although I hope I never need them. I also have 5 refills for it in the next year just in case I happen to go through that many (which I HOPE doesn't happen).
It's starting to become real to me that this is really happening. Earlier when my mom and I were examining the perscriptions, she said something to the effect of it being weird thinking that all of that stuff (the medicine laying in a pile on the table) was soon going to be a matter of life and death for both Justin and I. Yeah, it's kind of scary too, but I know it will all be okay.
This morning my mom picked up our prescriptions from the pharmacy. I got three bottles of pills and an emergency injectable. I got Hydrocortisone (also referred to as Cortef or Hydro) in 5 mg tablets for my afternoon dose and in 20 mg tablets for my morning dose. I don't think I'll always be at 20mg/5mg, but that's where Dr. Friedman is starting me at. Actually, that's what he's having us leave the hospital at -but the doctors at the hospital might think differently, I don't know. I also got a bottle of 0.1 mg pills of Fludrocortisone which is what people also refer to as Florinef. It is used to treat low levels of corticosteroid hormones (or at least that's what the insert about it says). Lastly I got a 100mg ACT-O-VIAL of Solu-Cortef with a syringe. I still have one from my last surgery, but now I have two, although I hope I never need them. I also have 5 refills for it in the next year just in case I happen to go through that many (which I HOPE doesn't happen).It's starting to become real to me that this is really happening. Earlier when my mom and I were examining the perscriptions, she said something to the effect of it being weird thinking that all of that stuff (the medicine laying in a pile on the table) was soon going to be a matter of life and death for both Justin and I. Yeah, it's kind of scary too, but I know it will all be okay.
Thursday, March 26, 2009
Liver Panel Results
I've had these results to post for a while, but I just now re-found them on my desk.
Total Protein - 7.1 - (6.0-8.30) [In Range]
Albumin - 4.6 - (3.70-5.0) [In Range]
Globulin - 2.5 - (1.90-3.50) [In Range]
A/G Ratio - 1.84 - (1.10-3.00) [In Range]
AST - 58 - (2-36) [High]
ALT - 114 - (7-52) [High]
ALK Phos - 73 - (37-360) [In Range]
Total Bili - 0.5 - (0.0-1.50) [In Range]
Direct Bili - 0.1 - (0.0-0.30) [In Range]
Indirect Bili - 0.4 - (0.20-0.80) [In Range]
My AST and ALT were high, I don't really know what that means though.
Tomorrow my mom will talk to Dr. Chiang's "girls" to finalize setting up surgeries.
Total Protein - 7.1 - (6.0-8.30) [In Range]
Albumin - 4.6 - (3.70-5.0) [In Range]
Globulin - 2.5 - (1.90-3.50) [In Range]
A/G Ratio - 1.84 - (1.10-3.00) [In Range]
AST - 58 - (2-36) [High]
ALT - 114 - (7-52) [High]
ALK Phos - 73 - (37-360) [In Range]
Total Bili - 0.5 - (0.0-1.50) [In Range]
Direct Bili - 0.1 - (0.0-0.30) [In Range]
Indirect Bili - 0.4 - (0.20-0.80) [In Range]
My AST and ALT were high, I don't really know what that means though.
Tomorrow my mom will talk to Dr. Chiang's "girls" to finalize setting up surgeries.
Tuesday, March 24, 2009
News
As you know, I started taking Ketoconazole a while back. I was going on a ski trip a few days after I started it, and my mom and I both thought it was a good idea just to not take it while I was gone. Although I hadn't had any bad reactions to it yet, what if I did get a bad reaction? Then what?
Well it turns out that stopping it right away wasn't such a good idea. The last dose that I took was at noon on Sunday. I felt fine all through Sunday and Monday morning. I got my warm clothes & skis on and went to ski school. Then about 20-30 minutes into it, I started feeling bad. Not horrible, but not great. I decided that I would perservere. About 15-20 minutes later, I just couldn't do it. I felt like I was going to throw up and was very dizzy. I told my ski instructor that I didn't feel well and headed back to the lodge where the adults were. Some other people from our group were already injured so we went back to the hotel and I was able to sleep. After sleeping I felt fine, but I didn't want to risk getting sick again, so I didn't ski the second day. Even though I didn't feel well some of the time, I still had a great time on the ski trip. I started taking my medicine full time again, and can feel a difference from when I wasn't on it.
Last night I got sick. I'm not sure what caused it, but it wasn't pleasant. I was driving home from getting a movie and my stomach started hurting. I didn't really think anything about it, but went to bed shortly after I got home. I woke up about 11:30 feeling awful. I felt like I was going to vomit, but it wouldn't happen. After a while I finally did and had some releif. I took a shower and went back to bed. I ended up sleeping about an hour later than normal this morning but now I feel fine.
Oh right, I have some exciting/scary news to share. While I was on my ski trip, my mom had another phone appointment with Dr. Friedman. She explained to him our current situations and our wants, and after a while he finally decided to approve us (Justin & I) for BLAs. We sent all of our medical records to Dr. Chiang in Wisconsin. We've read many great things about him and feel that he would be best to do the surgeries. Hopefully this week we'll get a surgery date. I'm working on getting ahead in my school work. I need to talk to the counselor to see what really needs to be done and everything. I know that it will all work out though, because they were very helpful last year when I was facing a pituitary surgery.
Well it turns out that stopping it right away wasn't such a good idea. The last dose that I took was at noon on Sunday. I felt fine all through Sunday and Monday morning. I got my warm clothes & skis on and went to ski school. Then about 20-30 minutes into it, I started feeling bad. Not horrible, but not great. I decided that I would perservere. About 15-20 minutes later, I just couldn't do it. I felt like I was going to throw up and was very dizzy. I told my ski instructor that I didn't feel well and headed back to the lodge where the adults were. Some other people from our group were already injured so we went back to the hotel and I was able to sleep. After sleeping I felt fine, but I didn't want to risk getting sick again, so I didn't ski the second day. Even though I didn't feel well some of the time, I still had a great time on the ski trip. I started taking my medicine full time again, and can feel a difference from when I wasn't on it.
Last night I got sick. I'm not sure what caused it, but it wasn't pleasant. I was driving home from getting a movie and my stomach started hurting. I didn't really think anything about it, but went to bed shortly after I got home. I woke up about 11:30 feeling awful. I felt like I was going to vomit, but it wouldn't happen. After a while I finally did and had some releif. I took a shower and went back to bed. I ended up sleeping about an hour later than normal this morning but now I feel fine.
Oh right, I have some exciting/scary news to share. While I was on my ski trip, my mom had another phone appointment with Dr. Friedman. She explained to him our current situations and our wants, and after a while he finally decided to approve us (Justin & I) for BLAs. We sent all of our medical records to Dr. Chiang in Wisconsin. We've read many great things about him and feel that he would be best to do the surgeries. Hopefully this week we'll get a surgery date. I'm working on getting ahead in my school work. I need to talk to the counselor to see what really needs to be done and everything. I know that it will all work out though, because they were very helpful last year when I was facing a pituitary surgery.
Monday, March 23, 2009
I know, I know
It's been a while since I've blogged. I've got lots to tell about, just not the time (at least right now, hopefully tonight, though). I have some exciting/scary news to share as well as what happens when you stop taking Ketoconazole. Anyway, you'll just have to wait (but not too long.).
-Jessica
-Jessica
Tuesday, March 10, 2009
Keto: Day One
I took my first dose of Keto last night at 9:00 and I'll take my second dose in just a bit. About 10:00 last night, I started feeling 'different'. I don't really know how to describe it - I didn't feel fantastic, but I didn't feel sick either, nor have I ever felt this way before. I started getting a headache about 10:30 and went to bed. For the first time in quite some time, I was able to sleep through the night without waking up at all. I also woke up about an hour to an hour and a half earlier than I normally do and didn't feel tired when I woke up - which I usualy do even with that extra sleep. So far I'm taking this as a good thing, but we'll just have to wait and see. I also must mention that I fell asleep quite quickly last night. I was able to lay down and shut my eyes and fall asleep within about 30 minutes - now that's a record for me!
Monday, March 9, 2009
Started it
I started taking my Ketoconazole today. Actually 15 minutes ago, I guess we'll just have to wait and see how it affects me.
Sunday, March 8, 2009
No Medicine, yet
I still haven't gotten the chance to start my Ketoconazole yet. I was going to start it sometime today, but not knowing how it would affect me, I was going to wait until my evening or night dose if I was going to start it today. I asked my mom if I should start tonight, or just start at noon tomorrow and she said to wait until tomorrow. After we get the results from my liver panel, then I'll start it. She just doesn't want me starting it and me already having a screwed up liver - which I totally understand.
This weekend (actually Thursday, Friday, and yesterday) I spent at a basketball tournament. Luckily I didn't feel sick at all. I didn't have any games on Thursday, I just watched, but I had games on Friday and Saturday. In the game on Friday, I played about 8 minutes, which is more than I've ever played in a game (though not all 8 minutes were played at once). Then on Saturday, I had two games, and played quite a bit in them as well. Not once did I get sick or go into AI or anything like that. I know that that was one thing that my mom was very worried about with me going because she wasn't going to be there the whole time. I did start to get a weird headache yesterday, but I think that was just somewhat normal, maybe?
This weekend (actually Thursday, Friday, and yesterday) I spent at a basketball tournament. Luckily I didn't feel sick at all. I didn't have any games on Thursday, I just watched, but I had games on Friday and Saturday. In the game on Friday, I played about 8 minutes, which is more than I've ever played in a game (though not all 8 minutes were played at once). Then on Saturday, I had two games, and played quite a bit in them as well. Not once did I get sick or go into AI or anything like that. I know that that was one thing that my mom was very worried about with me going because she wasn't going to be there the whole time. I did start to get a weird headache yesterday, but I think that was just somewhat normal, maybe?
Monday, March 2, 2009
Change of Plans
So my plans have change, both with how surgery is going to happen and taking Ketoconazole.
My plan was to start Ketoconazole immediately after I got it, but now I'm going to wait. On Wednesday afternoon, I'm leaving for a basketball tournament and won't be back until late Saturday night. My mom will only be with me Friday night and Saturday and since we don't know how I will respond to the medication, then it would be best to start it after I get home. I'll then start taking it on Sunday. I'll try it out for a few days, but if I start to have a bad reaction to it, I'm going to stop taking it for the time being. Next Friday, I'm going to a Girl Scout event and will return home on Saturday then leave the next day for a ski trip and will return on Tuesday. All of this time, I will be without my mom, so just in case, we don't want me to run into any real problems. But if I don't seem to have any bad reactions to it, then I'll just continue taking it.
As for the surgery situation, that has changed as well. The original plan was to wait until after my dad had his surgery before Justin & I would have our BLA's. It's been reconsidered, and the plan is that Justin & I will have BLA's before my dad goes to have his pituitary surgery. This is due to insurance issues and other things. My mom has, or is going to, e-mail Dr. F about this decision and see if we then need to have MRIs done or not. So now we're just waiting for a reply from Dr. Friedman, hopefully it won't take too long to get a reply.
My plan was to start Ketoconazole immediately after I got it, but now I'm going to wait. On Wednesday afternoon, I'm leaving for a basketball tournament and won't be back until late Saturday night. My mom will only be with me Friday night and Saturday and since we don't know how I will respond to the medication, then it would be best to start it after I get home. I'll then start taking it on Sunday. I'll try it out for a few days, but if I start to have a bad reaction to it, I'm going to stop taking it for the time being. Next Friday, I'm going to a Girl Scout event and will return home on Saturday then leave the next day for a ski trip and will return on Tuesday. All of this time, I will be without my mom, so just in case, we don't want me to run into any real problems. But if I don't seem to have any bad reactions to it, then I'll just continue taking it.
As for the surgery situation, that has changed as well. The original plan was to wait until after my dad had his surgery before Justin & I would have our BLA's. It's been reconsidered, and the plan is that Justin & I will have BLA's before my dad goes to have his pituitary surgery. This is due to insurance issues and other things. My mom has, or is going to, e-mail Dr. F about this decision and see if we then need to have MRIs done or not. So now we're just waiting for a reply from Dr. Friedman, hopefully it won't take too long to get a reply.
Bloodwork and Keto
Today I got my bloodwork done so I can start Ketocenazole (commonly referred to as Keto). On the paperwork that they give you when you check in at the hospital, it tells you when the last time you were checked in. Well the last time I checked in was at the beginning of October - 5 months ago! Yeah! That means I hadn't had my blood drawn in 5 months. It seems like I used to be getting in drawn at least once a week, if not more.
Now that I have my baseline bloodwork done, I can start taking Keto. I'll hopefully be able to start it tomorrow. Unfortunatley, Dr. Friedman spoke too quickly when he called our perscriptions into the pharmacy and so the pharmacist needs to call back and confirm with him exactly what was perscribed. I hope it doesn't take him too long to get back to them, but you just never know.
I don't have much time to post, so I'll tell the complete story later, but it looks like having a BLA will come sooner than I thought. Stay tuned!
Now that I have my baseline bloodwork done, I can start taking Keto. I'll hopefully be able to start it tomorrow. Unfortunatley, Dr. Friedman spoke too quickly when he called our perscriptions into the pharmacy and so the pharmacist needs to call back and confirm with him exactly what was perscribed. I hope it doesn't take him too long to get back to them, but you just never know.
I don't have much time to post, so I'll tell the complete story later, but it looks like having a BLA will come sooner than I thought. Stay tuned!
Sunday, March 1, 2009
Phone Appointment
Well, we got an unexpected surprise this week. Sometime this week, Lynne (Dr. Freidman's assistant) e-mailed my mom and told her that there was an opening for a phone appointment on Saturday (last night) and wondered if she wanted it. Of course she did!
Dr. F. was supposed to call anywhere between 9:00 and 10:30 our time. Now it's normal for him to call a little late, but at about 11:00, we gave up hope and figured that we weren't really scheduled to have a phone appointment. At 11:15-ish, though, we finally got the phone call.
Dr. F. said that I had enough high tests to be rediagnosed with Cushing's. *sigh of relief* He said there were 4 treatment options for me. One, I could go back in and have another pituitary surgery, which is what he highly reccomends. Dr. McCutcheon has already said that he wouldn't really feel comfortable going back into my pituitary with me being so young and already having read my 6-month post-op MRI as normal. Dr. F. seems pretty convinced that Dr. McCutcheon would still go in if Dr. F. wanted him to. The second option for treatment, although not long term , was to take medication to decrease the amount of cortisol that my body produces. This medication is called Ketoconazole and can eventually cause damage to liver, which is why it isn't intended for long term use. The third option of treatment would be radiation. Even though it was an option, he didn't want to have me do that though, because I could lose pituitary function. Lastly, I could have a BLA. That's what we (my mom & I) have talked about, and what we're leaning towards.
So we now have somewhat of an action plan. First, Dr. Friedman wants me to start taking Ketoconazole until I have whatever surgery is decided on. On Monday, I'll go into the lab and have a liver panel done on my blood as a baseline. Then I will start taking 200mgs of Ketoconazole at noon, 5 o'clock, and 9 o'clock. If I start to feel kind of sick in my low periods, then I'm supposed to take 15 mgs of Hydrocortisone in the mornings. Since Dr. Friedman is still in favor of another pituitary surgery, he's also having me do another MRI. I'm guessing that we'll have it done sometime in the next few weeks, which means traveling 3 hours to Denver. Once we get the results from the MRI, we're supposed to send it to Dr. McCutcheon to see if anything has changed. Once we have the results from the MRI, then we'll decide specifically which surgery I'll have.
Dr. F. was supposed to call anywhere between 9:00 and 10:30 our time. Now it's normal for him to call a little late, but at about 11:00, we gave up hope and figured that we weren't really scheduled to have a phone appointment. At 11:15-ish, though, we finally got the phone call.
Dr. F. said that I had enough high tests to be rediagnosed with Cushing's. *sigh of relief* He said there were 4 treatment options for me. One, I could go back in and have another pituitary surgery, which is what he highly reccomends. Dr. McCutcheon has already said that he wouldn't really feel comfortable going back into my pituitary with me being so young and already having read my 6-month post-op MRI as normal. Dr. F. seems pretty convinced that Dr. McCutcheon would still go in if Dr. F. wanted him to. The second option for treatment, although not long term , was to take medication to decrease the amount of cortisol that my body produces. This medication is called Ketoconazole and can eventually cause damage to liver, which is why it isn't intended for long term use. The third option of treatment would be radiation. Even though it was an option, he didn't want to have me do that though, because I could lose pituitary function. Lastly, I could have a BLA. That's what we (my mom & I) have talked about, and what we're leaning towards.
So we now have somewhat of an action plan. First, Dr. Friedman wants me to start taking Ketoconazole until I have whatever surgery is decided on. On Monday, I'll go into the lab and have a liver panel done on my blood as a baseline. Then I will start taking 200mgs of Ketoconazole at noon, 5 o'clock, and 9 o'clock. If I start to feel kind of sick in my low periods, then I'm supposed to take 15 mgs of Hydrocortisone in the mornings. Since Dr. Friedman is still in favor of another pituitary surgery, he's also having me do another MRI. I'm guessing that we'll have it done sometime in the next few weeks, which means traveling 3 hours to Denver. Once we get the results from the MRI, we're supposed to send it to Dr. McCutcheon to see if anything has changed. Once we have the results from the MRI, then we'll decide specifically which surgery I'll have.
Depression
Thursday night, I got really depressed. It just came over me and I don't know where it came from, it just appeared.
I got home from bible study (where I felt completely fine) and I sat down and checked the computer to see what was new, and I got this weird headache. It wasn't really a headache, but that's the only way I can describe it. Ah, that doesn't even make sense - but really, the whole experience didn't make any sense at all.
I felt kind of "blech" for a few hours, I just watched t.v. Then I went and layed down for bed, that's when it got bad. The depression took me away and I just started crying. The crying lasted for an hour while I thought of all the things going on in my life - it was all just overwhelming. I eventually started to get suicidal thoughts. I usually get these thoughts when I get depressed, but I've never really planned it, but this time I actually came up with a plan. That was scary.
Luckily I was able to fall asleep and wake up the next morning perfectly fine.
I got home from bible study (where I felt completely fine) and I sat down and checked the computer to see what was new, and I got this weird headache. It wasn't really a headache, but that's the only way I can describe it. Ah, that doesn't even make sense - but really, the whole experience didn't make any sense at all.
I felt kind of "blech" for a few hours, I just watched t.v. Then I went and layed down for bed, that's when it got bad. The depression took me away and I just started crying. The crying lasted for an hour while I thought of all the things going on in my life - it was all just overwhelming. I eventually started to get suicidal thoughts. I usually get these thoughts when I get depressed, but I've never really planned it, but this time I actually came up with a plan. That was scary.
Luckily I was able to fall asleep and wake up the next morning perfectly fine.
Wednesday, February 25, 2009
Could've been better
Hi all,
I've been having some rough days lately. Friday, Saturday, and Sunday I had weird bouts of not feeling well at all. Sunday seemed to be the worst as I got severely depressed for a few hours. Luckily I was able to sleep it off, though.
Monday, Tuesday, and today weren't bad though. I've had some slight insomnia, but I still wakeup about the same time as normal. My only problem is that I seem to be very unmotivated at everything - school, work, and just using the computer in general. Hopefully some motivation will return.
I'm getting really anxious to see what Dr. Friedman has to say during my mom's phone appointment with him. I hope all goes well, but you never know...
-Jessica
I've been having some rough days lately. Friday, Saturday, and Sunday I had weird bouts of not feeling well at all. Sunday seemed to be the worst as I got severely depressed for a few hours. Luckily I was able to sleep it off, though.
Monday, Tuesday, and today weren't bad though. I've had some slight insomnia, but I still wakeup about the same time as normal. My only problem is that I seem to be very unmotivated at everything - school, work, and just using the computer in general. Hopefully some motivation will return.
I'm getting really anxious to see what Dr. Friedman has to say during my mom's phone appointment with him. I hope all goes well, but you never know...
-Jessica
Friday, February 20, 2009
Test Results
Once again, this post is long overdue. It seems like I just can't muster up enough energy to blog these days. It's not that I have nothing to blog about, because boy do I! Anyway, here goes...
I've got more high tests, yay! A while back, I can't really remember when, my mom got the results of the last salivary, which came back at 0.065, which isn't high, but still means that I have 6 high salivas. Yesterday she got back the results of that UFC that I did which came back with a cortisol reading of 80 and a 17-hydroxycorticosteroid reading of 40. Both of which were high, although I would've only needed one of those to be high for it to count. This now gives me 3 high UFCs.
Lynne at Dr. Friedman's office finally got our phone appointment scheduled with Dr. Friedman for sometime in the evening of March 8th. That leaves me until next Thursday to get any more UFCs done if I want (although I don't think I will). I'm really not sure what I hope for to come out of this appointment, but I hope something good does.
Last night I felt soo horrible! I hadn't felt this way in so long either. I don't know if maybe it was something I ate or what. I ate supper around 7:30-ish and then just felt really tired, so I checked all of my stuff on the computer, and then laid down for bed. I watched t.v. for, I don't know, about an hour and a half before I actually fell asleep. I then woke up about 11:30-ish, went to the bathroom and felt just horrible! I felt like I had to throw-up, but nothing was there. I just hate that feeling. I went back to bed and then woke back up around 2:00-ish. I went to the kitchen and got a drink of water hoping that would settle my stomach. Well it didn't really, it took a while to fall back asleep but once I did I was able to sleep until about 8:30-ish and when I woke up I felt much better.
I guess that's all I have for now, hopefully it won't take me as long to post another update!
I've got more high tests, yay! A while back, I can't really remember when, my mom got the results of the last salivary, which came back at 0.065, which isn't high, but still means that I have 6 high salivas. Yesterday she got back the results of that UFC that I did which came back with a cortisol reading of 80 and a 17-hydroxycorticosteroid reading of 40. Both of which were high, although I would've only needed one of those to be high for it to count. This now gives me 3 high UFCs.
Lynne at Dr. Friedman's office finally got our phone appointment scheduled with Dr. Friedman for sometime in the evening of March 8th. That leaves me until next Thursday to get any more UFCs done if I want (although I don't think I will). I'm really not sure what I hope for to come out of this appointment, but I hope something good does.
Last night I felt soo horrible! I hadn't felt this way in so long either. I don't know if maybe it was something I ate or what. I ate supper around 7:30-ish and then just felt really tired, so I checked all of my stuff on the computer, and then laid down for bed. I watched t.v. for, I don't know, about an hour and a half before I actually fell asleep. I then woke up about 11:30-ish, went to the bathroom and felt just horrible! I felt like I had to throw-up, but nothing was there. I just hate that feeling. I went back to bed and then woke back up around 2:00-ish. I went to the kitchen and got a drink of water hoping that would settle my stomach. Well it didn't really, it took a while to fall back asleep but once I did I was able to sleep until about 8:30-ish and when I woke up I felt much better.
I guess that's all I have for now, hopefully it won't take me as long to post another update!
Sunday, February 8, 2009
I'm getting somewhere - just not fast enough!
A few weeks ago I did two sets of five 11 o'clock salivaries for ten days in a row. I was kind of just doing it as a gamble, hoping to get one or two highs out of it. I didn't really have any symptoms that I usually do when I'm in a high (canker sores and acne), but I did them all anyway. We got nine of the ten results, one is still pending. Of the nine that we have so far, six of them are diagnostically high. YEAH! The results from those are: 0.059, 0.073, 0.46, 0.18, 0.31, 0.11, 0.47, 0.086, and 0.19. Esoterix's (the lab that we use) reference range for 11 o'clock salivaries is <0.01 class="blsp-spelling-error" id="SPELLING_ERROR_3">bolded are the ones that I have that came back high. The last salivary that we're waiting for was taken between the 0.11 and 0.47 results, so I'm thinking it's a good possibility that it will come back high as well, but I'll just have to wait and see.
We're also waiting for the results back from a 24-hour UFC that I did a few days after this series of salivaries. I did it while my "high symptoms" were very prominent, so I'm hopeful about this one as well. Esoterix isn't testing the 17-hydroxycorticosteroids until February 17th, so I won't have results from that until after then. I'm thinking maybe I'll do one more this week that can be shipped off and tested in that batch as well. I already have two high 24-hour UFCs, one was 87 (with a 17-hydroxycorticosteroid of 19 which was also high) and the other was 92 (we don't have the results of the 17-hydroxycorticosteroids, but since the cortisol was high in the UFC, it doesn't really matter).
I have 3 high midnight blood serum results as well. The results from those were 21.3, 19, and 23.2. The ACTH came back pretty high with the last two results at 46 and 37 (we forgot to get it tested with the first one). I'm thinking (if my mom agrees to it) to try and get 3 more high results in this category before we have a phone appointment with Dr. Friedman. I guess I should probably tell her that is my goal, or it will never happen!
Dr. Friedman wants to have a phone appointment with my mom sometime in February, probably the latter part of it. Hopefully then we'll get more of a plan of action than what we have going now.
Everyone asks me how I feel, and I never really want to tell them exactly how I feel, so I always just tell them "so-so". It seems like the easiest thing to tell them without having to go into too much detail, because quite frankly, I don't.
I guess "so-so" is how I feel. There are some days that I feel great & on top of the world - okay, not on top of the world, but mostly normal. I can wake up without feeling sick, go about my day without feeling sick, and then fall asleep within a normal amount of time after laying down. Then I have my iffy days. That's when I wake up feeling kind of sick - usually it's just because I'm hungry and need to eat something; other times I'm not quite sure what it is, but my I feel sick to my stomach and usually just go back to bed. Then during the day, I can function, but I still kind of feel sick to my stomach and my back usually aches horribly and I have a terrible time falling asleep, sometimes I can lay in bed and watch t.v. for an hour, or it could be many hours. Then my worst days are horrible. I wake up feeling sick to my stomach and cranky (anything my mom says makes me mad!), then I try to fall back asleep, but if I don't I go about my day. Usually I don't do anything productive on these days though - just watch t.v. and surf the internet. I also get very depressed and crave foods like mad. Usually if I can eat whatever I'm craving (usually it's nachos or chips & dip) I can convince myself that I feel better and it seems like I do. I usually have some insomnia with these days too. It's not very severe, but I can't fall asleep immediately. Those are usually the way I feel, but then sometimes there's those days that I feel different from that.
Lately I've been feeling more of the first two and not much of the latter, which is good. I'm hoping that soon, though, I won't have to feel any of this, but I know that I'll probably have to feel kind of like this forever, but hopefully not as severe.
-Jessica
We're also waiting for the results back from a 24-hour UFC that I did a few days after this series of salivaries. I did it while my "high symptoms" were very prominent, so I'm hopeful about this one as well. Esoterix isn't testing the 17-hydroxycorticosteroids until February 17th, so I won't have results from that until after then. I'm thinking maybe I'll do one more this week that can be shipped off and tested in that batch as well. I already have two high 24-hour UFCs, one was 87 (with a 17-hydroxycorticosteroid of 19 which was also high) and the other was 92 (we don't have the results of the 17-hydroxycorticosteroids, but since the cortisol was high in the UFC, it doesn't really matter).
I have 3 high midnight blood serum results as well. The results from those were 21.3, 19, and 23.2. The ACTH came back pretty high with the last two results at 46 and 37 (we forgot to get it tested with the first one). I'm thinking (if my mom agrees to it) to try and get 3 more high results in this category before we have a phone appointment with Dr. Friedman. I guess I should probably tell her that is my goal, or it will never happen!
Dr. Friedman wants to have a phone appointment with my mom sometime in February, probably the latter part of it. Hopefully then we'll get more of a plan of action than what we have going now.
Everyone asks me how I feel, and I never really want to tell them exactly how I feel, so I always just tell them "so-so". It seems like the easiest thing to tell them without having to go into too much detail, because quite frankly, I don't.
I guess "so-so" is how I feel. There are some days that I feel great & on top of the world - okay, not on top of the world, but mostly normal. I can wake up without feeling sick, go about my day without feeling sick, and then fall asleep within a normal amount of time after laying down. Then I have my iffy days. That's when I wake up feeling kind of sick - usually it's just because I'm hungry and need to eat something; other times I'm not quite sure what it is, but my I feel sick to my stomach and usually just go back to bed. Then during the day, I can function, but I still kind of feel sick to my stomach and my back usually aches horribly and I have a terrible time falling asleep, sometimes I can lay in bed and watch t.v. for an hour, or it could be many hours. Then my worst days are horrible. I wake up feeling sick to my stomach and cranky (anything my mom says makes me mad!), then I try to fall back asleep, but if I don't I go about my day. Usually I don't do anything productive on these days though - just watch t.v. and surf the internet. I also get very depressed and crave foods like mad. Usually if I can eat whatever I'm craving (usually it's nachos or chips & dip) I can convince myself that I feel better and it seems like I do. I usually have some insomnia with these days too. It's not very severe, but I can't fall asleep immediately. Those are usually the way I feel, but then sometimes there's those days that I feel different from that.
Lately I've been feeling more of the first two and not much of the latter, which is good. I'm hoping that soon, though, I won't have to feel any of this, but I know that I'll probably have to feel kind of like this forever, but hopefully not as severe.
-Jessica
Friday, January 30, 2009
Welcome to my journey!
Thanks for taking the time to stop by my blog. I created this blog, in addition to my other one, to simply write down my thoughts and how I'm feeling in general. I have my other blog, which I used to write some of these things in, but I don't want my medical mystery to take over everything that I have.
Oh, where to start? Starting at the beginning would be a good start, but I'm not quite sure where the "beginning" is. Is it at the beginning of my life, the beginning of my family's medical drama, or the beginning of my medical drama? Wherever I choose start, it's a very long & complicated story, so I shall begin...
Approximately 9 years ago, my brother, Justin, started getting slightly sick. Well I think it was slightly, it may have been worse. He battled feeling crummy off & on for about 3-4 years. My mom took him to a gastroenterologist, believing that he had GI problems as she has Chron's disease. He actually went to two gastroenterologists, the better of the two being at the latter of the 4 years. This doctor tried his hardest to figure out what was wrong with Justin. He had multiple tests run, but he just kept running into a dead end.
We're now in my 7th grade year of school (I'm now a sophomore or 10th grader). I started to have some problems in my upper abdomen. My mom took me to my local doctor and he gave me Prevacid to make the pains go away. Well, that didn't work. Actually I can't say whether it really did work or not because I actually never took it as I couldn't swallow pills without gagging and throwing-up. I usually just hid the pills in the bottom of the trashcan. That's beside the point.
At this point, my brother's doctor (not the gastroenterologist, but just a plain doctor) had come to the conclusion that Justin was sick because his gallbladder wasn't working properly - which it wasn't. He had gallbladder surgery and he was well for about 6 weeks. My mom then ended up in the E.R. because of what the doctors told her was severe dehydration. She got better and returned home from the E.R., but still felt quite crummy for a while. She had an appointment with her gastroenterologist and he told her that she really wasn't dehydrated when she was in the E.R. (well she may have been, but that wasn't the total problem) but in fact she had gallstones and was probably having a severe gallbladder attack. She was scheduled to have surgery in the first part of June to have her gallbladder removed.
I still was feeling very sick in my upper abdomen. After experiencing this on a much larger scale than I was, she concluded that I was probably having gallbladder problems as well. She asked my doctor to check my gallbladder to see what was going on. I had an ultrasound of it, and that wasn't very clear, so I then had a HIDA scan. That showed that my gallbladder was functioning at 25%. Shortly after we got the results of that, my mom was having a consultation with the surgeon for her gallbladder surgery. She took me along with her to get his opinion on what should be done with my gallbladder. He said that since I was young, school was out for the summer and I wasn't suffering horribly yet, and I still had some function of my gallbladder, he'd rather wait and see what happens. If I got worse by the end of summer, he would consider taking it out.
In the middle of the summer, Justin got sick again after feeling so well for about 6 weeks. This really devastated my mom as she didn't like seeing him suffer. I still felt somewhat sick at times, so she decided to hit two birds with one stone and take Justin back and me for my initial visit with the gastroenterologist. Once again, he had no answers for what was going on - but that's not his fault as you will later read that we're working with the wrong system of the body.
Over the summer, Justin continued to get progressively worse. As for me, I can't remember exactly how I felt, but I don't think I was doing too bad or I would remember it - but I know I quit going to any doctors for a while, so I must've been doing okay at least. Anyway, over Labor Day weekend, my mom was introduced to some material about NUCCA. It's a chiropractic practice that would probably blow your mind away and think that the doctor was a quack. She decided to try it for Justin, so we ventured off to Colorado to see how this could help Justin. And you know what? It made Justin feel better. He had to have his spine adjusted about every two weeks to stay feeling better, but it worked. Eventually, though, the adjustments would only last about 2 or 3 days, but he still continued to get it adjusted. Then my mom's medicine quit working and I was still getting somewhat sick every now and then. So both of us started to get adjusted as well. It worked for both of us and helped us out tremendously.
Now Justin has hit rock bottom basically. He's so sick he can't go to school (I'm not going to put all of the school drama in here, but it was horrible), he became very depressed, and it just wasn't good. Then in February, he had what was believed to be an adrenal crisis. He was beginning to be paralyzed in the hands, was shaking, very weak, etc. He ended up in the E.R. and was eventually released a few hours later.
This really scared my mom (as it would anyone) and she began actively looking to see what was wrong with Justin. She came across cushing's disease and Cushings-Help.com. She had already read about cushing's a few months earlier, but when she presented it to Justin's doctor, he said it wasn't possible that Justin had it. Now my mom was convinced that Justin had cushing's. She joined the Cushings-Help.com message boards and gained much knowledge about cushing's. She set up an appointment for Justin to see an endocrinologist in Denver. At this time he was also going to a childrens hospital there and getting no where. The endocrinologist told my mom that it was a possibility that Justin had cushing's and ordered for him to do a 24-hour UFC (urinary free cortisol). They went back for another appointment and the doctor said that Justin's cortisol was fine and that he just needed to have a better diet (he's overweight) and he needed to see a therapist to control his depression. Somewhere about this time, my mom learned about an endocrinologist in Los Angeles, Dr. Friedman, and was considering taking him there.
I'm still getting sick some, my periods have been really strange, and I have developed some of the darkest, hairriest arms. My mom made an appointment for me to see the doctor once again about these problems thinking it was probably my hormones that were out of whack. After she made the appointment, a lightbulb went off in her head, and she realized that I was developing the beginning stages of cushing's disease.
She already realized that she wasn't going to get anywhere with the "local" endocrinologists (the ones in Denver). Hitting two birds with one stone again, she scheduled appointments for both Justin and I with Dr. Friedman in Los Angeles. In June, we went to Los Angeles, saw Dr. Friedman and had some testing done. Dr. Friedman believed that we both had cushing's and sent us home with lots of testing to do. While in L.A., I had an MRI of my pituitary and it showed that I had a 2mm tumor on my pitutary. Justin's on the other hand showed nothing (but there still was a tumor up there - it was hiding).
Justin and I did enormous amounts of testing with midnight blood draws, 24-hour UFCs, and 11 o'clock salivaries. Lots, and lots of testing. Some of the results came back positive for high cortisol, and lots came back negative for high cortisol. We're both also getting worse. Justins' still sick, depressed, etc. I'm starting to get sick more often and am getting very depressed. In November, we finally got a diagnosis of cushing's disease, but still needed to have one more test done called an IPSS. We were cleared for surgery, yay!
My mom ran into problems setting up our surgeries, so it took a while. In May (we're talking 2008 now), we traveled to Houston, Texas to have pituitary surgery at MDAnderson with Dr. Ian McCutcheon. The surgery went well and it seemed like we were both cured from cushing's. In October, my mom and I started to suspect that I wasn't cured. I did a little bit of testing, and it was confirmed. Later, my mom suspected that Justin didn't have a cure either - he did a bit of testing, and once again, she was right.
So now we're back to testing. Dr. Friedman wants us to both have many highs to rediagnose us. He hasn't told us this yet, but once we get a rediagnosis, we weill both probably face a BLA and then be stuck with Addison's Disease for the rest of our lives.
That's basically a nutshell of the whole saga - but that's not all. Somewhere in here I was supposed to add that my dad is a huge medical mystery as well. He is working on getting a diagnosis of cushing's disease as well. It's been said that cushing's isn't hereditary, but I beg to differ.
Whew! That's a lot! I don't think I've actually ever taken the time to write all of that down, but I'm glad I did. I didn't get a chance to really explain the depths of cushing's, but be looking forward to it in a future post:). This disease has so many faces, it could be one way for one person and a complete way for another person. Heck, Justin and I have completely different experiences with cushing's.
Oh, and in future blogs, I probably won't talk much about Justin, because who really wants to blog about their older brother. If you want to read about Justin's journey (as well as my dad's), head over to Cushing's Family and read my mom's blog. I just felt that it was somewhat important to put him in the beginning part because he's one of the main reasons that I got a diagnosis of cushing's.
-Jessica= )
Oh, where to start? Starting at the beginning would be a good start, but I'm not quite sure where the "beginning" is. Is it at the beginning of my life, the beginning of my family's medical drama, or the beginning of my medical drama? Wherever I choose start, it's a very long & complicated story, so I shall begin...
Approximately 9 years ago, my brother, Justin, started getting slightly sick. Well I think it was slightly, it may have been worse. He battled feeling crummy off & on for about 3-4 years. My mom took him to a gastroenterologist, believing that he had GI problems as she has Chron's disease. He actually went to two gastroenterologists, the better of the two being at the latter of the 4 years. This doctor tried his hardest to figure out what was wrong with Justin. He had multiple tests run, but he just kept running into a dead end.
We're now in my 7th grade year of school (I'm now a sophomore or 10th grader). I started to have some problems in my upper abdomen. My mom took me to my local doctor and he gave me Prevacid to make the pains go away. Well, that didn't work. Actually I can't say whether it really did work or not because I actually never took it as I couldn't swallow pills without gagging and throwing-up. I usually just hid the pills in the bottom of the trashcan. That's beside the point.
At this point, my brother's doctor (not the gastroenterologist, but just a plain doctor) had come to the conclusion that Justin was sick because his gallbladder wasn't working properly - which it wasn't. He had gallbladder surgery and he was well for about 6 weeks. My mom then ended up in the E.R. because of what the doctors told her was severe dehydration. She got better and returned home from the E.R., but still felt quite crummy for a while. She had an appointment with her gastroenterologist and he told her that she really wasn't dehydrated when she was in the E.R. (well she may have been, but that wasn't the total problem) but in fact she had gallstones and was probably having a severe gallbladder attack. She was scheduled to have surgery in the first part of June to have her gallbladder removed.
I still was feeling very sick in my upper abdomen. After experiencing this on a much larger scale than I was, she concluded that I was probably having gallbladder problems as well. She asked my doctor to check my gallbladder to see what was going on. I had an ultrasound of it, and that wasn't very clear, so I then had a HIDA scan. That showed that my gallbladder was functioning at 25%. Shortly after we got the results of that, my mom was having a consultation with the surgeon for her gallbladder surgery. She took me along with her to get his opinion on what should be done with my gallbladder. He said that since I was young, school was out for the summer and I wasn't suffering horribly yet, and I still had some function of my gallbladder, he'd rather wait and see what happens. If I got worse by the end of summer, he would consider taking it out.
In the middle of the summer, Justin got sick again after feeling so well for about 6 weeks. This really devastated my mom as she didn't like seeing him suffer. I still felt somewhat sick at times, so she decided to hit two birds with one stone and take Justin back and me for my initial visit with the gastroenterologist. Once again, he had no answers for what was going on - but that's not his fault as you will later read that we're working with the wrong system of the body.
Over the summer, Justin continued to get progressively worse. As for me, I can't remember exactly how I felt, but I don't think I was doing too bad or I would remember it - but I know I quit going to any doctors for a while, so I must've been doing okay at least. Anyway, over Labor Day weekend, my mom was introduced to some material about NUCCA. It's a chiropractic practice that would probably blow your mind away and think that the doctor was a quack. She decided to try it for Justin, so we ventured off to Colorado to see how this could help Justin. And you know what? It made Justin feel better. He had to have his spine adjusted about every two weeks to stay feeling better, but it worked. Eventually, though, the adjustments would only last about 2 or 3 days, but he still continued to get it adjusted. Then my mom's medicine quit working and I was still getting somewhat sick every now and then. So both of us started to get adjusted as well. It worked for both of us and helped us out tremendously.
Now Justin has hit rock bottom basically. He's so sick he can't go to school (I'm not going to put all of the school drama in here, but it was horrible), he became very depressed, and it just wasn't good. Then in February, he had what was believed to be an adrenal crisis. He was beginning to be paralyzed in the hands, was shaking, very weak, etc. He ended up in the E.R. and was eventually released a few hours later.
This really scared my mom (as it would anyone) and she began actively looking to see what was wrong with Justin. She came across cushing's disease and Cushings-Help.com. She had already read about cushing's a few months earlier, but when she presented it to Justin's doctor, he said it wasn't possible that Justin had it. Now my mom was convinced that Justin had cushing's. She joined the Cushings-Help.com message boards and gained much knowledge about cushing's. She set up an appointment for Justin to see an endocrinologist in Denver. At this time he was also going to a childrens hospital there and getting no where. The endocrinologist told my mom that it was a possibility that Justin had cushing's and ordered for him to do a 24-hour UFC (urinary free cortisol). They went back for another appointment and the doctor said that Justin's cortisol was fine and that he just needed to have a better diet (he's overweight) and he needed to see a therapist to control his depression. Somewhere about this time, my mom learned about an endocrinologist in Los Angeles, Dr. Friedman, and was considering taking him there.
I'm still getting sick some, my periods have been really strange, and I have developed some of the darkest, hairriest arms. My mom made an appointment for me to see the doctor once again about these problems thinking it was probably my hormones that were out of whack. After she made the appointment, a lightbulb went off in her head, and she realized that I was developing the beginning stages of cushing's disease.
She already realized that she wasn't going to get anywhere with the "local" endocrinologists (the ones in Denver). Hitting two birds with one stone again, she scheduled appointments for both Justin and I with Dr. Friedman in Los Angeles. In June, we went to Los Angeles, saw Dr. Friedman and had some testing done. Dr. Friedman believed that we both had cushing's and sent us home with lots of testing to do. While in L.A., I had an MRI of my pituitary and it showed that I had a 2mm tumor on my pitutary. Justin's on the other hand showed nothing (but there still was a tumor up there - it was hiding).
Justin and I did enormous amounts of testing with midnight blood draws, 24-hour UFCs, and 11 o'clock salivaries. Lots, and lots of testing. Some of the results came back positive for high cortisol, and lots came back negative for high cortisol. We're both also getting worse. Justins' still sick, depressed, etc. I'm starting to get sick more often and am getting very depressed. In November, we finally got a diagnosis of cushing's disease, but still needed to have one more test done called an IPSS. We were cleared for surgery, yay!
My mom ran into problems setting up our surgeries, so it took a while. In May (we're talking 2008 now), we traveled to Houston, Texas to have pituitary surgery at MDAnderson with Dr. Ian McCutcheon. The surgery went well and it seemed like we were both cured from cushing's. In October, my mom and I started to suspect that I wasn't cured. I did a little bit of testing, and it was confirmed. Later, my mom suspected that Justin didn't have a cure either - he did a bit of testing, and once again, she was right.
So now we're back to testing. Dr. Friedman wants us to both have many highs to rediagnose us. He hasn't told us this yet, but once we get a rediagnosis, we weill both probably face a BLA and then be stuck with Addison's Disease for the rest of our lives.
That's basically a nutshell of the whole saga - but that's not all. Somewhere in here I was supposed to add that my dad is a huge medical mystery as well. He is working on getting a diagnosis of cushing's disease as well. It's been said that cushing's isn't hereditary, but I beg to differ.
Whew! That's a lot! I don't think I've actually ever taken the time to write all of that down, but I'm glad I did. I didn't get a chance to really explain the depths of cushing's, but be looking forward to it in a future post:). This disease has so many faces, it could be one way for one person and a complete way for another person. Heck, Justin and I have completely different experiences with cushing's.
Oh, and in future blogs, I probably won't talk much about Justin, because who really wants to blog about their older brother. If you want to read about Justin's journey (as well as my dad's), head over to Cushing's Family and read my mom's blog. I just felt that it was somewhat important to put him in the beginning part because he's one of the main reasons that I got a diagnosis of cushing's.
-Jessica= )
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