Ear Ache

My ear has been hurting the tiniest bit and it is terrifying. If I didn't have WG, I wouldn't even think twice about it, but now it is so scary. I was at the store today and push the grocery cart with one hand and had some pain in my knuckle. I was like, "Oh no... is that the arthritis coming back? Is this a flare?" I live in this constant state of bodily assesment now. And it's sort of funny... it's not the ear pain or the Wegener's symptoms that I am truly afraid of. It is having to go back on the Cytoxin. I think I might actually refuse to go on it again. I might insist we try something else. Anyway, hopefully this is nothing.

Goodbye Cytoxan

I should have thought about my pills a little longer before I took them this morning. It may have been the last time I ever take Cytoxan again.

I saw Dr. Awadh today and am happy to report that he is switching me from the Cytoxan to Methotrexate. My latest lung CT scan showed that both of my lesions had shrunk and I haven't had joint pain or other WG symptoms for months. I knew I was a lot better during this lung CT Scan. The last one was sooo hard for me. I kept coughing during it and could hardly hold my breath for the required 15 second intervals. This time it was a piece of cake.

I am very happy to be getting off the Cytoxan. I think I've been getting pretty fatigued and nauseated from it. I have just been feeling pretty icky the past week, although maybe that is from the augmentin. Luckily I am done with that now too. I am picking up the Methotrexate from Walgreen's tomorrow and will start taking a once weekly dose on Friday.

Ross started up his contracting position and all seems to be going well with his job. It is pretty nice to have things getting back to normal. The only real problem recently has been that either my mom or Jeff has been sick since I moved home. I haven't really been able to see my mom for a long time. She sends me emails all the time about how much she misses seeing Amelia and me.

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. :)

Dr. Awadh Appointment

I saw Dr. Awadh today. My WBC is 6.8, which is still pretty reasonable. He is going to leave the Cytoxan at 200mg daily for another couple of weeks. I am supposed to drop the Prednisone to 30mg daily and switch it all to the morning dose starting tomorrow. I don't know how that is going to go. Last time I switched to taking my Prednisone all in the morning, I felt really awful. He said if I am miserable to do 20mg in the morning and 10 in the evening. We'll see how it goes.

Travel & Home

Ross dad is still doing pretty poorly. He can't keep down anything solid and is having another surgery to open his stomach sphincter on Tuesday. We have decided we are going to try to drive up to Boston to see him the last week in September. It'll be a really long drive. I am guessing it'll take 3 days each way with the baby, but I certainly don't want to fly because of my ears. Anyway, Ross and I like driving together. I am hoping we can do the trip for $600. Our Civic gets about 30mpg, and it is about 1500 miles... so that is 50 gallons of gas at $3/gal. $150 each way. That leaves us $300 for 4 nights of motels, food etc on the way. I think we can definitely do it.

Ross and I talked and talked about if Amelia and I should move back home. Since I am feeling so much better, we really think the biggest obstacle is my frequent doctor and lab appointments. I average about 2 per week and I really don't want to bring Amelia into the hospital with me. It would be a pain to drive from our house to my mom's to drop her off before going.. but I could do it. I am going to find out how late the labs are open at KU, because if I could go in the evening Ross could watch her. The other problem is that I really don't like to go out shopping because of my immune system. Currently, my mom or Jeff has really done almost all the groccery and other shopping for us. Ross would probably have to do that for us, but if I have the meals planned he would really only need to go Sunday afternoon or something. Lastly, I am always worried that as the Cytoxan builds up I will start to feel worse. Anyway, I am pretty sure we won't do anything before we go to Boston, but if I'm feeling okay I think we might try to move me back home right after our trip.

I have been doing a pretty good job of not biting my nails. I have some trouble not picking at hangnails, but I've bee getting better. My nails are getting longer and looking pretty good. Whoo hoo.. something good about WG. I'll have pretty nails! (Well, excpet I am pretty sure I am going to lose the nail off my previously infected finger... but I suppose it'll grow back.)

Feeling More Functional

My increased sleep seems to really be helping my functionality. I was able to do a ton of stuff today, even after Amelia woke up wicked early this morning. I feel much more mentally alert. I figure I'm getting a lot more REM sleep.

I am really contemplating if I am ready to move back home. Now that most of my WG symptoms have decreased, I am doing most of my own work at my mom's house. I am not really napping during the day anymore. I cook lunch and help with dinner, clean up after everyone a lot and have been doing most of our laundry. I also am helping my mom with her business now some. I feel that if I am well enough to be working with her, maybe I should be at home trying to get our stuff unpacked from our move and settling into our new house. It's hard though because I am worried I will get to feel worse on the Cytoxan. I am usually nauseated a bit in the afternoon, but not so much that I have to lay down. Since today was the first day of my new 200mg dose, I probably need to hold my horses and see how I am affected.

Nausea and Exhaustion

I think I am feeling a little more nauseated every day. I woke up this morning and sort of felt sick to my stomach even before I took the Cytoxan. Taking the Compazine with the Cytoxan hasn't really helped compared to taking it after I start feeling sick. I was pretty ill for a couple hours today, but started feeling better after lunch.

Amelia has maybe outgrown her swing which is unfortunate. She keeps trying to rock forward out of it and would have landed on her head if I wasn't there. It is really close to the ground, so her falling out of it isn't quite as scary as it sounds, but I still think that she is probably done with it. I hate to quit using it though because she takes her naps in it. I tried to put her down for a nap in the crib today and she kept startling herself back awake. Finally, I got the idea to swaddle her like we do at night and that helped a lot.

My mom was gone a lot of day and I didn't really get a break taking care of Amelia. Then around 9pm, I really crashed. My back started killing me and I just couldn't hardly keep my eyes open. I laid down on the couch, but didn't sleep for about an hour while my mom held Amelia. I feel better now, but the sudden exhaustion was hard.

Prednisone Taper

I thought I felt a little more cruddy today. My ankle is hurting somewhat and I just felt sort of blah today. I wonder if that is from the reduction in Prednisone starting last night.

I also noticed that I have a sore on my tongue like I had a few months ago before I was diagnosed... another sign that the Cytoxan isn't really working yet.

I'm up way too late and really tired, but trying to get my nails painted. They had gotten really chipped and I start picking at them if they aren't perfect.

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.

Nausea

Really icky day. I felt so nauseated, I took a Compazine today which ended up making me really drowsy. I spent most of the day in the glider with Amelia on my lap. Today was the first day that I have really felt pretty sick. I am guessing that the Cytoxan is starting to work.

I called Dr. Awadh regarding my fingernail infection. He put me on Augmentin and told me to go to the ER if I got a fever, chills, or my finger started looking worse. I am supposed to call him Monday morning to report on how it looks. So far, it is about the same.

Meeting Dr. Latinis

I saw Awadh and Dr. Latinis today. They had gotten my labs and Lung CT scan from 2 weeks ago back. My labs indicated that the prednisone had caused a drop in the inflammation etc even after only the 4 days I was on it. My lung CT showed 2 nodules / cavities in my right lung. They had showed my lung CT to a pulmonolgist who recommended I have a CT guided needle lung biopsy. They want the biopsy to be certain that I don’t have some sort of infection in my lung before they put me on immunosupressents and secondarily to confirm the WG diagnosis. They said it is wouldn’t be uncommon for me to have WG and still have some sort of infection or even fungus in the necratized lung cavity. If they start the immunosuppressents when I have an active infection, they could obviously make me very very ill. I am fairly opposed to an open or even VAT lung biopsy, but I comfortable with the needle guided one.

My needle lung biopsy will be on 08/01/07 (Wednesday) and then I will return to get my treatment plan with Dr. Awadh on 08/06/07 (Monday).

Assuming I don’t have an infection in my lung, I will probably start Cytoxan at that time.