This past Monday I went back down to the Huntsman Cancer Institute for another doctor's appointment with the specialist for my osteonecrosis. It was such mixed feelings going down--I had no idea what to think. My last appointment had been so hard and emotional, so I didn't know what to really expect at this one.I had called the nurse a few weeks earlier to ask a question as far as my osteonecrosis and my steroids and things, she asked me a few questions (what dose I was down to and things), we talked a little, and then she told me that she'd talk with the doctor and call me back. The voicemail she left on my phone a little later talked about how the doctor was still really wanting me to be able to be off of the steroids and pushing for that, and then she said something to the affect of 'but...well, why don't you come back down to see him due to how things are going and we'll see what he suggests.' So I made the appointment, and part of me was still hoping, crossing my fingers, and praying that this time he'd be able to do something and we could start this process (as he, the doctor, had mentioned at my last appointment that this would be a long journey but he'd be with me each step of the way); however, the other part of me was scared, nervous, didn't want to get my hopes back up, and afraid that he'd say I had to be completely off my steroids before we could start moving forward (and honestly, I didn't know if I could mentally and emotionally handle just continuing to sit at home waiting for something to happen between the adrenal glands, osteonecrosis, arachnoiditis, and things to figure things out and move forward)!
My mom and I got down to the Huntsman bright and early Monday morning, they told me that the doctor wanted some x-rays to look at my knees and femurs again, then they had us wait in the room. The first doctor came in, I think he's like either the resident or the fellow or something (anyways, super nice), and he went over how things looked on the MRIs that they did on my previous visit in September, how the x-rays that day looked, how things were feeling, and then talking about all the different types of knee replacements and also about how it's hard because of me being on the steroids places me at a high risk for infection, the dangers of infection, my adrenal insufficiency, how we'd need to take that step forward all together if we decided to do anything, and then he asked what my gut was telling me. I explained how in my gut and in my heart I wanted so bad to just start moving forward with things because I knew (know) that it's not going to just be one surgery or a short journey, how we had to take care of the osteonecrosis before we could do the stuff for the arachnoiditis and how I wanted to get back to driving again, going to school, and things; but how I was also nervous though! He said that that showed we were all on the same page of things--wanting to do things but hesitant as well--and that he'd go talk with the doctor, they'd come in, and then we'd discuss things and see what he thought.
Well a little later the doctor came in and I guess we didn't need too much discussing because, after talking out in the hall about what we had all just discussed and looking at my images and things, he said 'okay lets start this process.' So he asked about how my adrenal glands were doing, the steroid levels, went over the imaging with us, looked at my knees, and then asked which knee I wanted done first/which was the worst. I decided on the right, and so they scheduled me for my first surgery....a right knee replacement (with possible bone grafting--they'll decide on the grafting the day of the surgery depending upon the x-rays and what they see inside) on Wednesday December 12th! They'll do a pre-op on the 11th, then on the 12th they'll do the surgery, give me antibiotics, stress dose steroids (to help keep from any adrenal crisis), then I'll stay in the hospital for 2-3 days, go to the rehab center, and then 6-12 weeks later they will look at doing a replacement on my left knee, and then we'll decide on things from there.
I am so happy, excited, and ready to start moving forward and going with this process; but I am still very nervous! I trust my doctor, his nurse, and their team completely, and the hospital down there is so nice; but it's just hard not knowing what to completely expect, and to think that I'm going to have more metal in me, another replacement (I have a partial shoulder replacement), and to be down in Salt Lake rather than up in Ogden at McKay-Dee. I know that the Lord has been hearing and answering my prayers though and others (and I sincerely appreciate those prayers on my behalf), and it's time to take that next step into hopefully having a new beginning! =)
Saturday, November 24, 2012
Wednesday, November 14, 2012
A Very Eventful Weekend...
This past weekend was definitely another eventful weekend, and I am SO grateful for my family and friends for all their help, love, caring, and being there for me!!! I know I say it all the time, in like every post, but my family, friends, doctors, nurses, physical therapists, athletic trainers, and everyone truly are the BEST!!! So I guess I should probably explain to you why this weekend was so eventful, maybe a good idea, right?! Haha!!!
Well, I guess things kind of started more earlier last week (the weekend was just the eventful part). So, just kind of going off of my previous post...I had talked with my endocrinologist last week and she had added an additional steroid medication to my regimen due to my lab results and increased my other (the original) steroid back up to 10mg due to me not feeling well. Anyways, Wednesday was when I had gone up to the 10mg and by later on Wednesday evening I was starting to feel better and doing pretty well. Thursday came and I was feeling well--I mean not your super great run around and do tons of stuff type of thing, but I was feeling better than I was and thinking okay maybe I just needed to get back up this dosage and things are going to gradually start getting better and I'll feel well again. Right--not too much to hope for or think of?! (Hint, hint as to what's coming!) Thursday night was great--I was able to go up to my institute class with my friends and it was a great class! I came home and gradually started feeling worse and worse. During the night I was up and feeling extremely sick!!! I was able to go back to bed however, and I thought that hopefully I was just not feeling well from being exhausted from the day and a good night's sleep would make me feel better. I love sleep!
Every morning my sweet mom wakes me up before she goes to work to bring me my meds over to me, make sure I'm feeling okay, and get anything I need. Well lets just say when she woke me up Friday morning, the "good night's sleep" I had been hoping for to make things go away, did not happen!!! I felt absolutely awful--nauseated, dizzy, lightheaded, just wanting to sleep, and just not feeling right! I took my meds and things, and figured I better check my blood sugar and blood pressure (due to the adrenal issues). Checked blood sugar, perfect! Checked blood pressure, low! My mom helped me with things I needed and was very hesitant to go to work, but I told her it'd be okay, to just go to work, I would stay in bed and just not get out (she was only working half a day), and that I'd call the on-call endocrinologist and things to see what I should do (increase my steroids more or what) and then I'd let her know. So she left, I called and waited for the on-call doctor to call me back, and checked my blood pressure again and it was even lower! The doctor called me, and as I explained everything to her she told me that I better go to the ER to get checked out. Thank goodness my sister that lives just a few minutes away was off work, so my mom called her and she sweetly came and picked me up, took me to the ER to meet my mom, and she stayed with me.
As we waited, my blood pressure at first had gone up a bit so we were happy, but it quickly went back down, and down! They gave me IV fluids, meds for the nausea and things, and I just finally fell asleep (well what I thought was just asleep--taking a nap); but when I woke up, about 4 hours later, they were admitting me to the hospital!
I looked at my mom wondering why they were admitting me all of a sudden and what had happened during my "nap"...well, turns out it wasn't a nap, and I had gone into adrenal crisis again and went unresponsive!!! The doctors couldn't wake me up, and my mom said that every 15 mins or so my blood pressure would just drop further and further until it like 80/44 or something like that! So the doctor had to give me a high dose of "stress steroids" which was like 125mg of my steroids in order to pull me out of it! So I ended up staying in the hospital until Sunday afternoon when I got to come home! Turns out I got a UTI (urinary tract infection) and since my adrenal glands aren't producing the needed steroids/cortisol and things that people need, my body just went into crisis!
We saw my endocrinologist today and she's running more lab work to see if we can figure out whether I have primary or secondary adrenal insufficiency. They said while I was in the hospital that I definitely have the secondary adrenal insufficiency, but they're not sure about the primary. So for now, they're tapering me back down from the 25mg I'm on of the steroids back to 10mg and keeping me on that. I need to be careful that I'm not around anyone sick, because, as I just learned, if I get sick it can throw my body back into adrenal crisis!
I am so blessed and lucky to have had the doctor to reach, my sister to take me to the ER, the doctors and nurses there and in the hospital, my mom staying with me, friends who came to see me (including some of my doctors and physical therapist who are just so caring they came to see me--I count them as my friends), and everyone!!! I honestly don't know what would've happened if I wouldn't have made it/gone up to the ER that morning, and I don't even want to think about that--I am truly blessed!!! Thank you to all my family and friends--I love you all!!! And I will keep you posted on things!!!
Well, I guess things kind of started more earlier last week (the weekend was just the eventful part). So, just kind of going off of my previous post...I had talked with my endocrinologist last week and she had added an additional steroid medication to my regimen due to my lab results and increased my other (the original) steroid back up to 10mg due to me not feeling well. Anyways, Wednesday was when I had gone up to the 10mg and by later on Wednesday evening I was starting to feel better and doing pretty well. Thursday came and I was feeling well--I mean not your super great run around and do tons of stuff type of thing, but I was feeling better than I was and thinking okay maybe I just needed to get back up this dosage and things are going to gradually start getting better and I'll feel well again. Right--not too much to hope for or think of?! (Hint, hint as to what's coming!) Thursday night was great--I was able to go up to my institute class with my friends and it was a great class! I came home and gradually started feeling worse and worse. During the night I was up and feeling extremely sick!!! I was able to go back to bed however, and I thought that hopefully I was just not feeling well from being exhausted from the day and a good night's sleep would make me feel better. I love sleep!
Every morning my sweet mom wakes me up before she goes to work to bring me my meds over to me, make sure I'm feeling okay, and get anything I need. Well lets just say when she woke me up Friday morning, the "good night's sleep" I had been hoping for to make things go away, did not happen!!! I felt absolutely awful--nauseated, dizzy, lightheaded, just wanting to sleep, and just not feeling right! I took my meds and things, and figured I better check my blood sugar and blood pressure (due to the adrenal issues). Checked blood sugar, perfect! Checked blood pressure, low! My mom helped me with things I needed and was very hesitant to go to work, but I told her it'd be okay, to just go to work, I would stay in bed and just not get out (she was only working half a day), and that I'd call the on-call endocrinologist and things to see what I should do (increase my steroids more or what) and then I'd let her know. So she left, I called and waited for the on-call doctor to call me back, and checked my blood pressure again and it was even lower! The doctor called me, and as I explained everything to her she told me that I better go to the ER to get checked out. Thank goodness my sister that lives just a few minutes away was off work, so my mom called her and she sweetly came and picked me up, took me to the ER to meet my mom, and she stayed with me.
As we waited, my blood pressure at first had gone up a bit so we were happy, but it quickly went back down, and down! They gave me IV fluids, meds for the nausea and things, and I just finally fell asleep (well what I thought was just asleep--taking a nap); but when I woke up, about 4 hours later, they were admitting me to the hospital!
I looked at my mom wondering why they were admitting me all of a sudden and what had happened during my "nap"...well, turns out it wasn't a nap, and I had gone into adrenal crisis again and went unresponsive!!! The doctors couldn't wake me up, and my mom said that every 15 mins or so my blood pressure would just drop further and further until it like 80/44 or something like that! So the doctor had to give me a high dose of "stress steroids" which was like 125mg of my steroids in order to pull me out of it! So I ended up staying in the hospital until Sunday afternoon when I got to come home! Turns out I got a UTI (urinary tract infection) and since my adrenal glands aren't producing the needed steroids/cortisol and things that people need, my body just went into crisis!
We saw my endocrinologist today and she's running more lab work to see if we can figure out whether I have primary or secondary adrenal insufficiency. They said while I was in the hospital that I definitely have the secondary adrenal insufficiency, but they're not sure about the primary. So for now, they're tapering me back down from the 25mg I'm on of the steroids back to 10mg and keeping me on that. I need to be careful that I'm not around anyone sick, because, as I just learned, if I get sick it can throw my body back into adrenal crisis!
I am so blessed and lucky to have had the doctor to reach, my sister to take me to the ER, the doctors and nurses there and in the hospital, my mom staying with me, friends who came to see me (including some of my doctors and physical therapist who are just so caring they came to see me--I count them as my friends), and everyone!!! I honestly don't know what would've happened if I wouldn't have made it/gone up to the ER that morning, and I don't even want to think about that--I am truly blessed!!! Thank you to all my family and friends--I love you all!!! And I will keep you posted on things!!!
Thursday, November 8, 2012
New Update...
I'm sorry it's been so long since I've updated on things going on, but I'm going to try and get back going and updating on everything going on. So here's a quick, little update on what's been happening....
On the first of this month I went in to have my lab work for my adrenal glands rechecked. Well, the results came back and again, I broke down in tears. My baseline cortisol level (which is what your adrenal glands produce) came back at less than 1, so it basically hasn't improved at all! They also did another test as well that looks at your adrenal glands, called aldosterone, and the endocrinologist told me that she was surprised at how low that one was as well! So as I asked her if there was anything at all that we could do to figure out why these things were happening and what we could do to fix things, she said that: 1-Earlier on when we did tests for my pituitary gland it was looking good so it didn't look like I had addison's disease (which is definitely good), however, it's taking a long time for my body to be able to get off these steroids (which appears strange). 2-She added an additional steroid on to my regimen of meds, and then we'd see if that helps to make me feel a little better and give me some more energy. 3-That, it sounded like coming from what she was saying but I don't know for sure, maybe there could be something else like addison's going on but the lab work isn't showing everything (because low cortisol and low aldosterone are both signs of addison's). 4-When I asked if I may have to be on steroids for the rest of my life, she kind of paused and said 'maybe, that's what we're trying to figure out.'
Then, yesterday, I had been feeling so sick, extremely tired, and just not myself the majority of the last couple weeks (I've tapered back down to 7.5mg--which is where I had problems before and had to go back up on my steroids), so we talked to the endocrinologist again and she had me increase my original steroid again back up to 10mg to see if it would help and then stay on that dosage until next Monday and we'll call her and see what the plan is. The good news though is that increasing the steroid dose has helped me feel better!
The other update is that I am going back down to the Huntsman Cancer Institute to see the doctor for my osteonecrosis, and see if there is anything he can do yet to help with things since I am at a lower dose on my steroids; or, if I'm going to have to be completely off of the steroids before he can do anything. Although, if that's the case (that I have to be completely off the steroids), that makes me nervous because we don't know for sure yet if I will be able to get off the steroids completely. So, all that I can do is hope and pray!!! =)
On the first of this month I went in to have my lab work for my adrenal glands rechecked. Well, the results came back and again, I broke down in tears. My baseline cortisol level (which is what your adrenal glands produce) came back at less than 1, so it basically hasn't improved at all! They also did another test as well that looks at your adrenal glands, called aldosterone, and the endocrinologist told me that she was surprised at how low that one was as well! So as I asked her if there was anything at all that we could do to figure out why these things were happening and what we could do to fix things, she said that: 1-Earlier on when we did tests for my pituitary gland it was looking good so it didn't look like I had addison's disease (which is definitely good), however, it's taking a long time for my body to be able to get off these steroids (which appears strange). 2-She added an additional steroid on to my regimen of meds, and then we'd see if that helps to make me feel a little better and give me some more energy. 3-That, it sounded like coming from what she was saying but I don't know for sure, maybe there could be something else like addison's going on but the lab work isn't showing everything (because low cortisol and low aldosterone are both signs of addison's). 4-When I asked if I may have to be on steroids for the rest of my life, she kind of paused and said 'maybe, that's what we're trying to figure out.'
Then, yesterday, I had been feeling so sick, extremely tired, and just not myself the majority of the last couple weeks (I've tapered back down to 7.5mg--which is where I had problems before and had to go back up on my steroids), so we talked to the endocrinologist again and she had me increase my original steroid again back up to 10mg to see if it would help and then stay on that dosage until next Monday and we'll call her and see what the plan is. The good news though is that increasing the steroid dose has helped me feel better!
The other update is that I am going back down to the Huntsman Cancer Institute to see the doctor for my osteonecrosis, and see if there is anything he can do yet to help with things since I am at a lower dose on my steroids; or, if I'm going to have to be completely off of the steroids before he can do anything. Although, if that's the case (that I have to be completely off the steroids), that makes me nervous because we don't know for sure yet if I will be able to get off the steroids completely. So, all that I can do is hope and pray!!! =)
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