Ups and Downs

Everyone recovered from their colds. I saw Dr. A again a couple of weeks ago and he dropped my prednisone down to 5mg. I didn't really have any side effects from that. He also raised my methotrexate to 17.5, which has made me feel a little worse. It gives me headaches and some more nausea. Dr. L told me to double my folic acid the day I take my methotrexate and the day after. I don't really think that has helped much though.

All in all, I think I am doing really well. Dr. A said I could get out more and didn't have to be so restricted with being in public like I was on the Cytoxan. So a few days ago I decided to take Amelia into the grocery store to pick up some formula. Of course, she spent the entire time running her mouth all over the handle of the cart. I couldn't stop her. I was just thinking, "Well, this is going to make her sick again. We're all going to end up with the flu!" Of course her nose started running yesterday and she is cranky. I am hoping it's just cause she is getting a new tooth (her 6th one!)

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.

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.

Nasty Habit

I went to labs today and dropped by Dr. Awadh's office since I knew he had clinic this morning. He looked at my finger and said that if the swelling hadn't gone down by Wednesday I would have to come back. Looking at it tonight though, I actually think it is better. I really don't want them to have to lance it or anything.

Dr. Awadh also was like, "Have you quit biting your nails?" I said, "Now, I have." But I keep finding my fingers in my mouth. I take them out, but it is really hard habit to break. Ross was supposed to bring my fingernail polish tonight so I could paint my nails, but forgot. I don't usually bite them if they are painted, but it is hard to keep them that way. Hopefully I can get them painted tomorrow.

I didn't take a Compazine today. I was driving myself to labs this morning and started feeling sick, but didn't have one with me. The nausea went away after 15 minutes or so. I had a few more waves of it today, but nothing like last Friday.

(Ugh.. just caught myself biting my nails again! stop Stop STOP!! Ughg!!)

My fatigue has been pretty bad today. I was rocking Amelia to sleep tonight and about fell asleep in my mom's rocker (which is not very comfortable). After I put her in her swing to nap, I barely made it into bed before I passed out. I feel like I just suddenly get incoherent from exhaustion sometimes now.

I just read an interesting article about a young woman with WG from Self magazine.

The Water Deprivation Test

Right now my excessive thirst is making me nuts. This thirst, drink, urinate cycle is causing more trouble than anything. I can't get any sleep and am tired all the time. I thought that the fatigue was the WG, but now that the prednisone has helped all my other symptoms I think the fatigue is from my disrupted sleep patterns. I go to bed around 1am and wake up every 60-90 minutes to drink and pee until about 4:30am when I pump (which I will stop doing shortly). I then go back to sleep from about 5:30am-8:30am, waking up once or twice in that stretch. It is really driving me crazy. Dr. Awadh thinks I may have something called diabetes insipidus (unrelated to the more common diabetes mellitus).

Today was really rough. I had to take a water deprivation test to test for the diabetes insipidus today. I wasn't allowed to drink any water after 3am until my blood was drawn at 9am. This was pure torture since I have a huge thirst problem. I drank a ton of water at 3am, but woke up at 5am and couldn't go back to sleep because I was so thirsty. I kept getting up every 10 minutes to swish water around my mouth and spit it out.

After the test, I saw Dr. Awadh to discuss the results of both it and my lung biopsy. Dr. Awadh said the labs did show I had diabetes insipidus and he has referred me to a nephrologist. He said that the lung biopsy showed necrosis, but no active vascultis. It was negative for infection so he wants to start me on the Cytoxin.

I am planning to start taking the Cytoxin on Thursday morning, which gives me a couple of days to wean Amelia over to a bottle. Sob. :(

Lung Biopsy

I only got 3 hours of sleep last night. Amelia didn't go down till about 1a,m and then I futzed around and pumped until about 2am. I woke up at 5am to pump again and then had to get ready to go to the hospital. I needed to be there at 7am to have a blood clot test drawn before the biopsy scheduled for 9am. Ugh. Even if I wasn't sick, my lack of sleep would make me feel tired all the time.

I took 40mg of Prednisone last night because I wasn't allowed to take it before the surgery. I woke up feeling much much better than yesterday. I am amazed at the difference.

A minor problem was not being able to drink anything for 4 hours prior to the biopsy. I have a serious case of polydipsia (excessive thirst) and have been drinking about 2 gallons of water a day... maybe more. Many normal people find it difficult to drink the recommended 8 cups and I am easily putting back 32 cups a day. I think the polydipsia is related to the WG because it started about the same time as my ear problem last November. It was awful not to be able to drink for 4 hours prior to the biopsy. They let me 'swish and spit' and I walked around with a water bottle and a spit cup all morning, but it didn't help much.

The biggest problem for the day happened in the pre-op waiting area when the surgeon came in to discuss the procedure with us. I had been leery of having any lung biopsy done, but Dr. Awadh had assured us that the needle biopsy was a minor procedure. However the surgeon said, "You should be aware there is 50% chance your lung will collapse after we do this and you will be in the hospital for a couple of days with a chest tube." WHAT??? 50% chance of lung collapse isn't associated with an 'minor' procedure I have ever heard of.

I feel very mislead by Dr. Awadh. Did he really not know that there was such a high chance of a complication? If we'd known, I think we would have still agreed to do it, but we would have made arrangements in case there was a problem. As it is, we were scrambling to find somebody to take care of Amelia for the day. Me being in the hospital for another 2 days would have wrecked havoc on my mom and Ross' schedule. And yet leaving w/o getting the biopsy seemed impractical. I figured we'd end up having to come back later and that would have caused it's own problems, so we decided to go ahead with it.

In any case, my lungs are both still inflated. I do feel like somebody hit me in the back with a stick though and the 'pleurisy / muscle spasm' pain feels like it could return. I am hoping that goes away, but I have been careful not to lift Amelia or anything all afternoon.

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.

Meeting Dr. Awadh

The prednisone has helped my arthritis vastly. I am able to move my hands and fingers again. Also, walking is easier although my ankles and feet still hurt somewhat. Stairs are difficult. I am too weak to walk very far with Amelia in my arms.

Saw a rhuematology fellow named Dr. Awadh (and his attending Dr. Lindsey) who asked me about my past history and said he thought I had WG also. Dr. Awadh ordered more blood work to see if the Prednisone had reduced the inflammation, my blood creatine level and other autoimmune labs. He also ordered a CT scan of my chest. He wants me to have either an open or VAT lung biopsy to confirm the WG diagnosis.

Although my urine test doesn’t show an elevated creatine level (meaning I may not have kidney involvement), Dr. Awadh suggested that I be placed on Cytoxin for 3-6 months and then switch to Metheltrexate. I asked if we could delay starting treatment for 2 more weeks so I could b reastfeed Amelia until she is 3 months. Dr. Lindsey said that I had been sick for such a long time that 2 weeks shouldn’t make much of a differnce. I scheduled an appointment for 07/30/07 to discuss test results and start treatment.

The CT scan of my chest was very difficult. I had to hold my breath while the machine was taking pictures which led to coughing fits. One of the techs said, “How long have you had that cough?” I told him I’d had it for about 6 weeks, but had also had it of and on for the past couple of years.