More Sickness News, and Stem Cells
I think I've had about two hospitalizations since the last post. The first from Oct 24-26th and the second most recent from Nov 6-18th. You might think I just love the hospital! The second one, I spent a week and a day waiting to have a bronchoscopy. The OR kept getting emergencies and not having time to do me. My rheum docs were about to strangle my surgeon, Dr. Sherwood. There's only one other doc who does these invasive airway procedures, Dr Yung, but he was out of town and is also much less experienced. My doctors were even looking to send me to another hospital for the procedure. It was really getting ridiculous, sitting in Johns Hopkins Hospital, one of the best hospitals in the world, and I couldn't get a bronchoscopy!
Anyhow, the last Oct visit cultured Pseudomonas, another opportunistic infection common in compromised patients such as myself. I've had it a couple times, and my uncle, sick with CF, lost his life to it. So I had a course of oral Cipro. I got better.
Then on Nov 5 left lung collapsed again (with much pain), and my blood-oxygen saturation was dropping into the 70's when I walked around, warranting another trip in. Then I waited a week for the bronch. Then they did one and cultured Pseudomonas again. They also cultured *active* Wegener's Granulomatosis. Now, we know I have WG, but my tissue biopsies don't usually come back active all the time. This doesn't mean anything. I mean, the samples they cut and test are incredibly small. But this result kind of shocked the docs I guess because I've been on daily cyclophosphamide and have had periods of low wbc counts and everything. So, they stopped the CYC, obviously not working, did three days of a 1gram pulsed solumedrol, and began 14 days of IV Zosyn antibiotics for the Pseudomonas-- every six hours. Also brought my prednisone dose up from 40mg to 60mg. The solumedrol used to make me euphoric when I had it, and take away pain too. Now... all it really does is make me gain weight x_x Seriously, this is getting ridiculous. I hatehatehate not looking like myself. Not only do the corticosteroids make increase your appetite, they also help you gain weight, and redistribute the fat in your body (hello moonface).
The Zosyn ever 6 hours is really hard. Of course I am in charge of all my medications. I have an alarm that goes off throughout the day. It is wreaking havoc on my sleeping schedule.
So the bronch during the last stay opened up the left lung again but during the last couple of days it seems to be shutting off a little bit, or at least parts. I'm starting to feel sick again too, achy and headachy, hot. Temp of 98.8, which I know, isn't that high, but my av temp is around 96, and the pred hides fevers. Blood ox saturation has been a little down too. However, I really hate the hospital, and tomorrow is thanksgiving, so I told my mom I wasn't going in unless I got a real fever or the lung closed down again for good. Until then I'll try to stick it out.
As for the WG treatment, we may be turning a new page. My doctors have decided that for Cyclophosphamide to be therapeutic for my Wegener's, it would have to be at too high a dose. Meaning, my immune system would be too far compromised for me to survive with my damaged lungs. If my lungs and airways were not so damaged, perhaps it might be OK to have my white blood cell count that low, but it is certainly not OK now. So, I began a fourth round of Rituximab. This is a very new monoclonal antibody, used for non-hodgekins lymphoma and recently marketed for rheumatoid arthritis. I received my first course (four doses) nearly two years at the Mayo Clinic in Rochester Minnesota. I needed a second course that Summer, and a third in the Fall a bit more than a year ago. The Mayo Clinic had treated 30 WG patients at that time, and had not had to retreat any of them within 9 months. So, I've had 4 courses in 2 years, that's a lot. So basically what this means, is it's not really working. However, Rituximab has a lot fewer side effects than cyc-- no sterility, hair loss, leukemia, etc. So we did another course of it, not really expecting it to work. This brings me to our next plan of action. Stem Cells.
Yep. Stem Cells. I guess I had heard about this treatment a while ago, but recently I found this study on clinicaltrials.gov, called Hematopoietic Stem Cell Support. (The big h-word just means adult blood stem cell, versus emryonic). Now, this study is being done in Chicago. I contacted the study coordinators and they said that yes, I did appear to be eligible, and I would have to come to Chicago. So, I asked my doctor about Stem Cells, too. He said that he had done the procedure on another patient for another disorder, and while the treatment was not successful, it went smoothly. He said that he had actually had the oncologist see me back in June when I was sedated and had at that time asked about the procedure himself. Of course, I was too sick at that time to endure any such thing.
So the hematologist came to see me again. He said that I looked like a good candidate. Basically, what it involves is 4 days of high-dose cyclophosphamide in the hospital. While I have been on several different chemotherapy drugs, I have never actually had "chemo." This is chemo. Go bald and throw your guts up chemo. After four days they give you a buncha masks or whatever and you enter a program called "ipop" which stands for in-patient out-patient. Basically you have to get local housing, and then come into the hospital every day for blood transfusions (which he says i'll inevitably need), medications, and check-ups. If you're sick, they check you in. After a couple weeks, as soon as your white blood cell count is back up to a minimal level, they let you go.
The idea with this treatment is to kill off my bone marrow and entire immune system-- everything *except* the stem cells. Then, we wait for my stem cells to regrow themselves into a new immune system that isn't as screwy as the last one. Because I wasn't born with Wegener's. Something happened, causing my immune system to malfunction in this way. This treatment has never been done for WG at Johns Hopkins, although they have treated patients with similar diseases. Sometimes, the treatment actually cures the disorders, but they really don't know with WG.
I'm scared for this procedure, and we are not 100% sure that I will do it, but it seems very likely and the doctors seem to be moving in that direction. I'm really worried about it interfering with Christmas :( I hope that I will be able to go home for christmas. I'm already thinking about a hat to knit myself. It's going to be cold!! I'll have to get re-immunized in a year. I wonder if that means *all* my vaccines. I guess I could get chicken pox again! Yuck! That was awful.
I've been doing a lot of knitting. It's good fun. Lots of washclothes, and socks. I still haven't knit anything big. I found a pattern for a nice sweater actually. I think I'm going to attempt that. My dad's wife asked for a hat for Christmas. Although, it kind of felt like she asked for one to show appreciation or just so that I would have a present for her for christmas. Like, I don't think she really appreciates how much time and effort it takes for me to knit a hat. I mean, I'm kind of a slow knitter. It'll probably take more than a week. And when I asked my dad what he wanted for christmas he said, "sure i'll have one too." Which kind of bothers me. I'm happy to knit the hats, but I don't think they realize all the time, effort, frusteration, etc that goes into them. :/ I really work hard, and am very meticulous about any mistakes. The littlest thing, and I will take the piece out and restart because I would not be happy with an imperfect object.
Ayayay.
Well, in good news, I fixed my laptop! It's been broken for months and months. Basically, I had installed ZoneAlarm and somehow it became corrupted in such a way that I could neither uninstall or reinstall it. Several minutes after startup, it would cut off all http connections and the only way to restore them was a restart. Restarts every 10 minutes are awful, let me tell you. So I hadn't used this computer since July. Finally I found some insructions and got rid of the nasty thing. But my advice to you all is, don't use ZoneAlarm! Not a good program.
'Sall
Oh, I would like you all to help pray for my friend Lorin. I met her at the Mayo Clinic Jan 2005 looking for treatment. She has something called dysautonomia, but is really mainly undiagnosed. Until 12 or so she was healthy. Now, when she stands up her blood stops circulating in her body and her feet turn purple. Because of this she is in a wheelchair and can't walk. Periodically she has "crises" where she experiences a combination of symptoms including loss of speech, movement, consciousness, and other awful things. Sometimes she loses speech for days on end. Doctors haven't been able to help her, besides helping to control some of the symptoms, and she's even had a few doctors try to convince her it was all psychological! Well, anyhow, stuff is tough for her sometimes. So I hope she gets better.
Anyhow, the last Oct visit cultured Pseudomonas, another opportunistic infection common in compromised patients such as myself. I've had it a couple times, and my uncle, sick with CF, lost his life to it. So I had a course of oral Cipro. I got better.
Then on Nov 5 left lung collapsed again (with much pain), and my blood-oxygen saturation was dropping into the 70's when I walked around, warranting another trip in. Then I waited a week for the bronch. Then they did one and cultured Pseudomonas again. They also cultured *active* Wegener's Granulomatosis. Now, we know I have WG, but my tissue biopsies don't usually come back active all the time. This doesn't mean anything. I mean, the samples they cut and test are incredibly small. But this result kind of shocked the docs I guess because I've been on daily cyclophosphamide and have had periods of low wbc counts and everything. So, they stopped the CYC, obviously not working, did three days of a 1gram pulsed solumedrol, and began 14 days of IV Zosyn antibiotics for the Pseudomonas-- every six hours. Also brought my prednisone dose up from 40mg to 60mg. The solumedrol used to make me euphoric when I had it, and take away pain too. Now... all it really does is make me gain weight x_x Seriously, this is getting ridiculous. I hatehatehate not looking like myself. Not only do the corticosteroids make increase your appetite, they also help you gain weight, and redistribute the fat in your body (hello moonface).
The Zosyn ever 6 hours is really hard. Of course I am in charge of all my medications. I have an alarm that goes off throughout the day. It is wreaking havoc on my sleeping schedule.
So the bronch during the last stay opened up the left lung again but during the last couple of days it seems to be shutting off a little bit, or at least parts. I'm starting to feel sick again too, achy and headachy, hot. Temp of 98.8, which I know, isn't that high, but my av temp is around 96, and the pred hides fevers. Blood ox saturation has been a little down too. However, I really hate the hospital, and tomorrow is thanksgiving, so I told my mom I wasn't going in unless I got a real fever or the lung closed down again for good. Until then I'll try to stick it out.
As for the WG treatment, we may be turning a new page. My doctors have decided that for Cyclophosphamide to be therapeutic for my Wegener's, it would have to be at too high a dose. Meaning, my immune system would be too far compromised for me to survive with my damaged lungs. If my lungs and airways were not so damaged, perhaps it might be OK to have my white blood cell count that low, but it is certainly not OK now. So, I began a fourth round of Rituximab. This is a very new monoclonal antibody, used for non-hodgekins lymphoma and recently marketed for rheumatoid arthritis. I received my first course (four doses) nearly two years at the Mayo Clinic in Rochester Minnesota. I needed a second course that Summer, and a third in the Fall a bit more than a year ago. The Mayo Clinic had treated 30 WG patients at that time, and had not had to retreat any of them within 9 months. So, I've had 4 courses in 2 years, that's a lot. So basically what this means, is it's not really working. However, Rituximab has a lot fewer side effects than cyc-- no sterility, hair loss, leukemia, etc. So we did another course of it, not really expecting it to work. This brings me to our next plan of action. Stem Cells.
Yep. Stem Cells. I guess I had heard about this treatment a while ago, but recently I found this study on clinicaltrials.gov, called Hematopoietic Stem Cell Support. (The big h-word just means adult blood stem cell, versus emryonic). Now, this study is being done in Chicago. I contacted the study coordinators and they said that yes, I did appear to be eligible, and I would have to come to Chicago. So, I asked my doctor about Stem Cells, too. He said that he had done the procedure on another patient for another disorder, and while the treatment was not successful, it went smoothly. He said that he had actually had the oncologist see me back in June when I was sedated and had at that time asked about the procedure himself. Of course, I was too sick at that time to endure any such thing.
So the hematologist came to see me again. He said that I looked like a good candidate. Basically, what it involves is 4 days of high-dose cyclophosphamide in the hospital. While I have been on several different chemotherapy drugs, I have never actually had "chemo." This is chemo. Go bald and throw your guts up chemo. After four days they give you a buncha masks or whatever and you enter a program called "ipop" which stands for in-patient out-patient. Basically you have to get local housing, and then come into the hospital every day for blood transfusions (which he says i'll inevitably need), medications, and check-ups. If you're sick, they check you in. After a couple weeks, as soon as your white blood cell count is back up to a minimal level, they let you go.
The idea with this treatment is to kill off my bone marrow and entire immune system-- everything *except* the stem cells. Then, we wait for my stem cells to regrow themselves into a new immune system that isn't as screwy as the last one. Because I wasn't born with Wegener's. Something happened, causing my immune system to malfunction in this way. This treatment has never been done for WG at Johns Hopkins, although they have treated patients with similar diseases. Sometimes, the treatment actually cures the disorders, but they really don't know with WG.
I'm scared for this procedure, and we are not 100% sure that I will do it, but it seems very likely and the doctors seem to be moving in that direction. I'm really worried about it interfering with Christmas :( I hope that I will be able to go home for christmas. I'm already thinking about a hat to knit myself. It's going to be cold!! I'll have to get re-immunized in a year. I wonder if that means *all* my vaccines. I guess I could get chicken pox again! Yuck! That was awful.
I've been doing a lot of knitting. It's good fun. Lots of washclothes, and socks. I still haven't knit anything big. I found a pattern for a nice sweater actually. I think I'm going to attempt that. My dad's wife asked for a hat for Christmas. Although, it kind of felt like she asked for one to show appreciation or just so that I would have a present for her for christmas. Like, I don't think she really appreciates how much time and effort it takes for me to knit a hat. I mean, I'm kind of a slow knitter. It'll probably take more than a week. And when I asked my dad what he wanted for christmas he said, "sure i'll have one too." Which kind of bothers me. I'm happy to knit the hats, but I don't think they realize all the time, effort, frusteration, etc that goes into them. :/ I really work hard, and am very meticulous about any mistakes. The littlest thing, and I will take the piece out and restart because I would not be happy with an imperfect object.
Ayayay.
Well, in good news, I fixed my laptop! It's been broken for months and months. Basically, I had installed ZoneAlarm and somehow it became corrupted in such a way that I could neither uninstall or reinstall it. Several minutes after startup, it would cut off all http connections and the only way to restore them was a restart. Restarts every 10 minutes are awful, let me tell you. So I hadn't used this computer since July. Finally I found some insructions and got rid of the nasty thing. But my advice to you all is, don't use ZoneAlarm! Not a good program.
'Sall
Oh, I would like you all to help pray for my friend Lorin. I met her at the Mayo Clinic Jan 2005 looking for treatment. She has something called dysautonomia, but is really mainly undiagnosed. Until 12 or so she was healthy. Now, when she stands up her blood stops circulating in her body and her feet turn purple. Because of this she is in a wheelchair and can't walk. Periodically she has "crises" where she experiences a combination of symptoms including loss of speech, movement, consciousness, and other awful things. Sometimes she loses speech for days on end. Doctors haven't been able to help her, besides helping to control some of the symptoms, and she's even had a few doctors try to convince her it was all psychological! Well, anyhow, stuff is tough for her sometimes. So I hope she gets better.