I finally feel like I'm over my cold. Even though all my blood work looked good, I was still running a low fever and pretty congested last week so Dr. A put me on 10 days of Augmentin (even though I don't think I was showing any signs of a bacterial infection). I think he was just buying time. Anyway, he said if I still felt sick after I was done with the antibiotics he wanted to do a CT scan of my sinuses. Luckily, I really am feeling better so no CT scan for now. I haven't taken my Methotrexate in 4 weeks.
Around the time my cold started, I noticed that my feet were hurting again. Dr. A said that sometimes a cold can cause aches like that (I disagree) so he wasn't too worried about it. The last time I saw him, he examined them and thinks I might have a stress fracture. My second metatarsal was really tender and Prednisone can make you susceptible to stress fractures, so I guess it is a possibility, but I don't really think so. It's not like I'm in excruciating pain. My right foot especially hurts mostly at the start of the day and then at the end of the day when I take off my shoes and walk barefoot. It doesn't hurt so much that I can't stand on it though. Anyway, he wants me to get an x-ray next week (even though I read that x-rays don't usually reveal stress fractures anyway). But I don't really have a better idea of what might be wrong, except maybe I need new shoes. :)
Showing posts with label labs. Show all posts
Showing posts with label labs. Show all posts
Thursday, June 12, 2008
Thursday, October 18, 2007
Home Sweet Home
Well I finally moved back home today. We had been talking about moving me home really soon because my mom's back is better and my health has been really good. We had planned on getting the house cleaned up a bit first (Ross living like a bacholor had left in an unfit state for my standards). However, my mom started getting a cold so I thought it was prudent to get out of her house immediately. I spent all day packing up and driving home. I am exhausted, but thrilled to be back in my own house. It is going to take me while to get unpacked, and cleaned and organized, but at least I'm own my way to living my own life again.
My visit on Monday with Dr. Awadh went really well. He said that he thinks he will take me off of the Cytoxan next month (and probably switch me to Metholtrexate). My labs all look really good. There is no sign of inflammation despite the fact that I am now down to 17.5mg of Prednisone. I still have a runny nose and some congestion, but he said that he thinks the systemic Wegener's is under control.
I am now going to go lay my head down in my own sweet bed on my own sweet pillow (at least until Amelia wakes up and needs a bottle) and drift into blissful sleep. :)
My visit on Monday with Dr. Awadh went really well. He said that he thinks he will take me off of the Cytoxan next month (and probably switch me to Metholtrexate). My labs all look really good. There is no sign of inflammation despite the fact that I am now down to 17.5mg of Prednisone. I still have a runny nose and some congestion, but he said that he thinks the systemic Wegener's is under control.
I am now going to go lay my head down in my own sweet bed on my own sweet pillow (at least until Amelia wakes up and needs a bottle) and drift into blissful sleep. :)
Sunday, August 26, 2007
Labs, MRIs, Bone Scans, Hand X-Rays
I had a busy day at KU today.
I had to get to the lab really early so my bloodwork would be read by my 9am appointment with Dr. Awadh. I requested, but didn't get my usual phlebotomist. I really disliked the guy, Max, that ended up taking my blood. The woman, Robin, who usually does the draws always uses a butterfly needle which I think works much better for me. When requested that Max use the butterfly needle he said, "Oh you don't need something that complicated for this," and promptly poked me directly with the needle connected to the vacutainer. He then said, "Frankly, I would worry about anyone that needed to use that for such a simple draw." Uh-huh. Max hurt me way more than Robin ever does.
At my appointment with Dr. Awadh, he told me that my WBC is still pretty high so he needs to up my Cytoxan dosage. This week I will be taking 175mg and then next week I start taking 200mg each day. Fun Fun Fun. Dr. Lindsey (the attending) was there and said to start taking the Compazine with the Cytoxan as a preventative to the nausea instead of after the fact. He said it would work better that way, especially as they raise the dose. I think my symptoms have stayed fairly constant since the Prednisone really kicked in... I still have sinus trouble, shortness of breath, hearing loss and ear fullness, etc. I am not thrilled with raising the Cytoxan, but I actually have not felt that my WG has really improved since I started it so I understand the neccessity of changing the dose.
Dr. Awadh also had my Pituitary MRI results back. They showed that my pituitary is enlarged which means I have Central Diabetes Insipidus. That means my kidneys aren't the problem, but that my pituitary probably is. For some reason my pituitary probably isn't releasing enough vasopressin in my body anymore, so my kidneys don't retain as much water as they should. Luckily, they can give me vasopressin as a daily nasal spray. Unluckily, I have to wait to see an endocrinologist before I get the medicine. Dr. Awadh doesn't feel qualified to prescribe it. I am waiting to hear back from the endocrinology department about my appointment date. I hope it is soon. Oh, to be able to sleep more than 90 minutes in a row without getting up to go to the bathroom. :)
I also showed Dr. Awadh a slightly painful lump on my left hand. I think it is part of a vein (and caused by the vasulitis), but he sent me for an x-ray. He also sent me for a bone density scan to see if I need to be prescribed Fosamax. The prednisone effects bone density and leads to ostioperosis, so I may need to be on that. The scan came back normal, but I think he will probably put me on it anyways.
Oh, Dr. Awadh loved my symptom tracker. He was like, "How are you feeling? Any improvement?" And I said, "Here is a list of my symptoms over the past few weeks." He said, "Wow! This is really helpful." I think it is a great idea, because it is too hard to tell if I am improving or getting worse over time. I got sick so slowly that I didn't realize anything was wrong. I guess that I really scared my aunt when she came to visit because I was so sick and didn't know it. Ross didn't even realize it either. I had just gotten a little worse everyday so that it seemed normal.
I had to get to the lab really early so my bloodwork would be read by my 9am appointment with Dr. Awadh. I requested, but didn't get my usual phlebotomist. I really disliked the guy, Max, that ended up taking my blood. The woman, Robin, who usually does the draws always uses a butterfly needle which I think works much better for me. When requested that Max use the butterfly needle he said, "Oh you don't need something that complicated for this," and promptly poked me directly with the needle connected to the vacutainer. He then said, "Frankly, I would worry about anyone that needed to use that for such a simple draw." Uh-huh. Max hurt me way more than Robin ever does.
At my appointment with Dr. Awadh, he told me that my WBC is still pretty high so he needs to up my Cytoxan dosage. This week I will be taking 175mg and then next week I start taking 200mg each day. Fun Fun Fun. Dr. Lindsey (the attending) was there and said to start taking the Compazine with the Cytoxan as a preventative to the nausea instead of after the fact. He said it would work better that way, especially as they raise the dose. I think my symptoms have stayed fairly constant since the Prednisone really kicked in... I still have sinus trouble, shortness of breath, hearing loss and ear fullness, etc. I am not thrilled with raising the Cytoxan, but I actually have not felt that my WG has really improved since I started it so I understand the neccessity of changing the dose.
Dr. Awadh also had my Pituitary MRI results back. They showed that my pituitary is enlarged which means I have Central Diabetes Insipidus. That means my kidneys aren't the problem, but that my pituitary probably is. For some reason my pituitary probably isn't releasing enough vasopressin in my body anymore, so my kidneys don't retain as much water as they should. Luckily, they can give me vasopressin as a daily nasal spray. Unluckily, I have to wait to see an endocrinologist before I get the medicine. Dr. Awadh doesn't feel qualified to prescribe it. I am waiting to hear back from the endocrinology department about my appointment date. I hope it is soon. Oh, to be able to sleep more than 90 minutes in a row without getting up to go to the bathroom. :)
I also showed Dr. Awadh a slightly painful lump on my left hand. I think it is part of a vein (and caused by the vasulitis), but he sent me for an x-ray. He also sent me for a bone density scan to see if I need to be prescribed Fosamax. The prednisone effects bone density and leads to ostioperosis, so I may need to be on that. The scan came back normal, but I think he will probably put me on it anyways.
Oh, Dr. Awadh loved my symptom tracker. He was like, "How are you feeling? Any improvement?" And I said, "Here is a list of my symptoms over the past few weeks." He said, "Wow! This is really helpful." I think it is a great idea, because it is too hard to tell if I am improving or getting worse over time. I got sick so slowly that I didn't realize anything was wrong. I guess that I really scared my aunt when she came to visit because I was so sick and didn't know it. Ross didn't even realize it either. I had just gotten a little worse everyday so that it seemed normal.
Tuesday, August 14, 2007
Out and About
Today I drove myself to my labs while my mom babysat Amelia. It was sort of nice to be out alone for once. I have constantly had someone with me since Amelia was born.
It was also the first time I had worn my contacts in a long time. Boy was everything a lot clearer! I like them way better to drive in, but probably won't wear them most days because I want to be able to nap in the afternoon without taking them out.
My sinuses were pretty stuffy again today. At least the Sinus Rinse helps for several hours at a time. I can't believe I didn't know about it when I was pregnant. I was so congested. I really think my ob should have recommended it instead of just saline spray.
Ross is having a pretty hard time. His dad is back in the hospital because he hasn't been able to eat anything. Before my WG diagnosis, we had planned on going up to Boston at the end of August... I guess that less than 2 weeks away now so it doesn't look like we will make it. We were going to take a train, but I don't think public transit is a good idea while I'm on Cytoxan. Maybe we'll go up for Thanksgiving. I am worried about Ed and think we need to make a trip soon though.
It was also the first time I had worn my contacts in a long time. Boy was everything a lot clearer! I like them way better to drive in, but probably won't wear them most days because I want to be able to nap in the afternoon without taking them out.
My sinuses were pretty stuffy again today. At least the Sinus Rinse helps for several hours at a time. I can't believe I didn't know about it when I was pregnant. I was so congested. I really think my ob should have recommended it instead of just saline spray.
Ross is having a pretty hard time. His dad is back in the hospital because he hasn't been able to eat anything. Before my WG diagnosis, we had planned on going up to Boston at the end of August... I guess that less than 2 weeks away now so it doesn't look like we will make it. We were going to take a train, but I don't think public transit is a good idea while I'm on Cytoxan. Maybe we'll go up for Thanksgiving. I am worried about Ed and think we need to make a trip soon though.
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