After the surgery, of course I was in pain from it, but the nerve pain was completely gone. I stayed in the hospital for 7 days, then went home. The incision looked fine, there was no inflammation, no red...but the area did look a bit swollen. Like the area underneath it was "full". Then it started oozine a yellowish liquid. It didn't look like pus, so I wasn't concerned. But it didn't stop...after two weeks of this, I finally went to the ER. I didn't come home for 27 days.
I layed on my side for 7 days and endured numerous tests. Eventually they said I had an MRSA infection. Methicillin Resistant Staphylococcus Aureus. Say that 10 times fast. It required some very heavy duty antibiotics, which ended up giving me another infection (C Difficile). After 7 days of no positive progression, they decided they needed to open the incision, drain it, and let it heal as an open wound. Feels as good as it sounds!!! I spent another 20 days after the surgery in the hospital getting my 8 inch incision packed and unpacked twice a day. Then when I finally got home, the home nurses came for about 2 weeks, then eventually my husband started doing it. It didn't completely heal until about 3 months after it was opened up again.
THE MORAL OF THE STORY IS THAT HEATHER, AND YOU, ARE NOT INVINCIBLE! :P
Pulse therapy, my old friend. I had that, my daily prednisone dose was back up to 60mg, and as of January 2005, I am was chemotherapy every 3 weeks. Also, on the same day as the chemo, I would get a bolus of 500mg IV Solu-Medrol. The docs are discussing my beginning Rituxan because after 4 years of Cytoxan, things are only getting worse, and it's looking more and more likely that I will eventually lose my kidneys. Rituxan is something they want to thoroughly look at before they give it a shot though...also I've done some reading on it, and I'm not entirely thrilled about it. If anyone's got any info on Rituxan used in the treatment of lupus, please e mail me! I'd love to hear some personal experiences.
Finally a couple weeks later I received another round of Rituxan...and again a little over a week after it, the fevers, chills and sweating. My white count was also very high, but I was not given antibiotics. It went away on its own in a couple of days, and I received my regular 2 week infusion on time...and another week later, yet again, the same thing happened.
In June of 2005, I began getting extreme stomach pains after I ate or drank anything mostly, but it happened whenever my stomach felt like giving me a hard time. The pain was mostly on the right side of my abdomen, but the entire stomach area was very tender to the touch. After dealing with this and constant diarrhea for weeks, I finally went to the ER on the advice of my doctor.
The pain was unbearable when they pressed on my stomach. They did some tests looking for gall stones, but didn't find any. Instead, they found a fatty and enlarged liver, and an enlarged spleen. They were also very suspicious of Mesenteric Vasculitis (intestinal) because of some things they found on my sonogram. I still haven't had a confirmative test for this...but I can tell you I am STILL having pain! They are very reluctant to do the tests because the dye is very harmful to the kidneys...and at the moment my creatnine has been stuck at 2.5 for a while.
In early July of 2005, I was in the hospital for a few days because the docs wanted to do so many tests, it was easier to keep me there. Because of some memory loss and loss of cognative abilities, I was given an MRI looking for brain vasculitis, which was thankfully negative. I also had to endure my 7th spinal tap this week, July 19th, 2005, looking for an odd and rare infection in the spinal fluid...which was also negative.
I have not had Rituxan for a month now because of all that's been going on. At the moment I am praying that I don't have blood clots all over my body. I had to stop my coumadin for 4 days prior to the spinal tap, and couldn't start it again until the day after...and going 5 days without being anticoagulated is very dangerous for me. I'm feeling very stiff all over, I have several sore and very tight spots that I'm a bit worried about. :( I've been back on my coumadin for 3 days now...so it should kick in soon.
My coumadin is doing well, haven't had any problems with it since we first moved to PA in July. I am NO LONGER on any form of chemotherapy! That means no more Cytoxan either. Woo Hoo! Haven't had it in 6 months, and on the last check, my kidney counts were normal. Is it because of the Rituxan, or the fact that it was just time something started working right for me? Who knows. But since November 2005, my kidneys are doing great. As for the severe stomach pains....turns out I was tapering off the prednisone a bit too fast. I am now only dropping a half a millogram every month. I am at 10.5 now, and will be taking that dose for another 2 weeks. Then down to 10!!!!! This is the least amount of prednisone I have been on since December of 1997 when I was started on 120mg a day. They are trying to rely on the Cellcept instead of the Prednisone now for immue suppression, so I am back up to 4 250mg pills a day of Cellcept. My total dose is 1000mg. My stomach seems to be dealing with it alright. I will go through anything to be off Prednisone!!!
My major problem now is depression. I am going through a rather bad bout with it now that has been going on for months. It may be a while before there are more updates. For those of you who know Major Recurrent Depression, then you likely understand the diagnosis, and what it means. It's like a black hole. When I'm like this, I think of the song "Hurt" by Nine Inch Nails...."I hurt myself today, to see if I still feel. I focus on the pain, the only thing that's real." I get a lot of e mails from people who say they look up to me because they feel I am strong. Sometimes maybe, but certainly not all the time. Noone can deal with chronic illness all day every day and not have it affect their mental status in some way. I have always been depressed...I've been this way since I was 8 years old and it all went downhill from there. I feel stuck in a loop. I'm depressed because I'm alone, yet I don't want to go out and meet people. I've brought myself to the point now where I am on the brink of an anxiety attack if I go out in public alone. When my husband is there, I can usually last a bit longer than a few seconds. I never wanted to become this, and I don't know how to get out. So I'm going to take some time off for a while and just work on getting the help I need. January 25, 2006
So let's see, what's been going on the last 10 months...well, we are no longer in upstate NY. We have purchased a house in the Reading, PA area, and we intend to stay here for a while. This is where my husband's family lives. They have become my family also. :) My anxiety attacks have slowed down big time, which I am greatful for. About 5 months ago I had a small bout of pneumonia, and another one just a few weeks ago, but I recovered from both in record time. For me anyway. I was diagnosed with type II Diabetes before we left NY, and I've been having a lot of foot pain related to that. I'm also having troubles regulating my sugars and may have to soon start taking a medication for the Diabetes. Right now it is managed by diet, but even first thing in the morning my sugar is usually 140 to 170. The foot pain keeps me up at night a lot. My pain meds (vicoden) don't even touch it, but I am too chicken to ask for anything stronger because I don't want to look like a pill junkie. An Rx Queen, for all you Deftone fans. :P
I've been relying on my wheelchair and scooter more these days when it comes to shopping and such. There are days when every step feels like hot needles in my feet. For now I don't need the chair around the house, but there will come a day when I do, and I'm not looking forward to that day. My degenerative disc disease in my lower back has gotten worse, and my bone density tests are no longer normal. So I have osteoporosis now...thanks to prednisone. :( I've been having a ton of blood work and different scans and tests to find out what's causing all my stomach problems. They have been going on for years, and I'd like an answer soon. I think I finally found a GI doctor that also wants answers. I had some "exams" done that involve tubes in unkind places....I have inflammation in my stomach, esophagus, and upper intestines. Joy, but we still don't know why. I have a CAT scan coming up at the end of this month. It was during one of these exams that I puked while the tube was down my throat and aspirated into my lungs. That's what caused the second episode of pneumonia this year.
The good news is.....I have finally reached a steady weight, no more gaining (no losing either)...I am down to 4mg of prednisone a day. WOO HOO!!! I am not on chemotherapy.....my kidney numbers have been wonderful since january. There have been a few incidents where my kidney numbers get dramatically worse, but this only happens when I get dehydrated.
In September of 2006, I had a benign tumor removed from my right breast. Not a big deal, but it does increase my risk for breast cancer. But still, I feel I am in a better place than I was just a year ago. And there was much rejoicing!
What to ask your doc
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Look up Prednisone side effects in the dictionary, and you'll see this picture.
December 2004.