FW WegWife
08-02-2013, 11:26 PM
Hello everyone. My husband and I live in Fort Worth, Texas. My 56 year old husband, hereafter known as ‘D’, was diagnosed with Wegener’s on June 28th 2013 at the end of a 5 day hospital stay for acute renal failure. This normally very healthy man had been suffering from horrible joint pains over his entire body for 2 weeks. He was so sick he couldn’t drive or work at his desk job. This is a man who NEVER misses work. During that awful 2 week period, I took him to his PCP twice. The first time, I was so sure he would be admitted I went ahead and packed a bag for the hospital. The PCP was baffled by his symptoms: severe joint pain, tongue sores, jaw pain, red spots on the elbows, knees, chest and feet, fatigue, loss of appetite, no fever. All this was in addition to the unresolved problem of sinuses blocked with those horrific enormous bloody boogers seemingly composed of beef jerky and caramel for which she had already referred him to an ENT earlier this year. Initial blood tests showed an alarmingly high sed rate indicating inflammation. She gave him a steroid shot and sent us home with codeine pills for the pain plus a prednisone pack to start bringing down the inflammation while we sat back and waited for more test results. Additional blood tests were ordered looking for auto-immune disorders, parvovirus, West Nile Virus and other exotic illnesses. The steroids gave him a couple days of relief. After that, the pain came back with a vengeance. We just had to gut it out with the pain pills and hope like hell for a diagnosis and treatment plan. What prompted me to take him to the ER on a Sunday morning was when he reported new symptoms of nausea and bloody brown urine. Yes, I looked at it. It freaked me out so badly I said “Let’s go to the ER” and started packing the hospital bag for the second time.
Luckily, there was almost no wait in the ER that morning. The urine specimen left no doubt that something bad was going on. The ER Dr gave D a good looking over and suggested that he might just have “a nasty bladder infection”. Many blood tests and blood cultures were ordered. I was a little confused when she ordered the chest x-ray. We hadn’t discussed anything going on in there. Within an hour, blood tests started coming back showing that he was in acute renal failure with severe dehydration. The chest x-rays showed some kind of lung infiltrates. With all this news plus the fact that he was being admitted to the TRANSPLANT floor, I began to really freak out.
For the first couple of days, many tests were ordered but no treatment was given other than IV fluids and antibiotics. The pain continued, controlled only by codeine pills every 4 hours. His creatinine level continued to rise to a high of 5-point-something on Day 3. That morning, he started having shortness of breath. His oxygen level had gotten so low a blood transfusion was ordered. This day was also my 50th birthday. We were supposed to be on the beach in Florida celebrating but it didn’t work out that way. When I saw the fear starting to show on my stoic husband’s face that morning I began to meltdown. Worst Birthday Ever.
Things started to turn around later on Day 3 as test results came in. The kidney biopsy revealed serious inflammation but no scarring. The nephrologist started 3 days of massive doses of IV pred. By the end of Day 3, the joint pain was completely gone. Creatinine levels started dropping too. Test results ruled out many terrible maladies but the test for Wegener’s was taking longer to come back. As each possible disease that I never heard of was mentioned by various doctors I would quickly google it on my smartphone. I remember being most terrified of Wegener’s because whatever I looked at said something about an 80 % mortality rate. On Day 4, it was down to either Wegener’s or a possible allergic reaction to some kind of OTC medication like Aleve or Prilosec. The morning of Day 5 brought news of positive results for Wegener’s. The nephrologist delivered this news without a lot of embellishment but with some degree of sadness. At that point, we were just glad D was feeling better so we went home with a stack of prescriptions and a low potassium/low phosphorous diet plan. He was put on 150 mg of Cytoxan and 60 mg of Pred plus Bactrim.
My plan was to go straight to denial mode but this luxury was not available to me. Well-meaning family members kept calling with tearful wishes for good luck. They must have looked at the same 80% mortality site I had seen earlier. I got on the computer to try to learn a little more. More gloom and doom. Even a quick glance at this site added to my sense of darkness, disability and even death. My computer became an object of fear to me. At the first available opportunity, I fled to my own PCP to discuss the physical symptoms of panic, fear, and anxiety that were consuming me. Through the miracle of modern pharmacy, in a week or so I was feeling like I could think rationally enough to cope with whatever needed coping with. One day I popped a Xanax and forced myself to sit at the computer and google “ Wegener’s” plus any positive terms I could think of like “success” “living with” “recovery” “remission”, etc… That’s how I found out that our future is not anywhere near as dark as my imagination had led me to believe. Also through the miracle of modern pharmacy, D was showing improvement every day. By his 2 week follow up with the nephrologist, lab work was looking good and he was off the special diet. He was instructed to start tapering the Pred by 10 mg/week during August. The only lingering effect has been stiffness and swelling in his lower legs and feet. That has very gradually subsided. Yesterday he looked down at his feet and yelled “Oh my god!” Of course, my heart sank, thinking it was the return of the red spots or something. He was yelling because the swelling had come down enough that he could actually start to see veins and tendons in his feet again.
So here we are a month later pretty much back to a normal life. We don’t want to be defined by this disease. We’re both kind of uncomfortable discussing it too directly. We call it The Condition or Your Condition. I don’t think D even remembers what it’s really called. He’s not very interested in learning about it. He just wants to be normal. For a while after he got out of the hospital he was still telling people that he had a severe allergic reaction to Aleve. I guess to his ManBrain that was more palatable than having a disease. To the ManBrain, disease equals weakness. We have developed a kind of team approach to dealing with this. I have taken on more of the junkyard dog role. It’s my job to get educated and manage the treatment plan as well as possible. His job is to keep being his adorably positive self, take his meds and report any new or returning symptoms. My biggest fear is that he will disregard changes that might indicate a flare. However, memory of that awful pain and a week in the hospital seems to have made an impression. My hope is that with constant vigilance, we can keep this beast at bay and continue down the path we were on before all the drama hit us. The whole experience has brought us even closer.
Thank you all in advance for being on the team. I have read almost every post on this site and learned so much. However, I still have questions. You’ve been warned.
K (FW WegWife)
Luckily, there was almost no wait in the ER that morning. The urine specimen left no doubt that something bad was going on. The ER Dr gave D a good looking over and suggested that he might just have “a nasty bladder infection”. Many blood tests and blood cultures were ordered. I was a little confused when she ordered the chest x-ray. We hadn’t discussed anything going on in there. Within an hour, blood tests started coming back showing that he was in acute renal failure with severe dehydration. The chest x-rays showed some kind of lung infiltrates. With all this news plus the fact that he was being admitted to the TRANSPLANT floor, I began to really freak out.
For the first couple of days, many tests were ordered but no treatment was given other than IV fluids and antibiotics. The pain continued, controlled only by codeine pills every 4 hours. His creatinine level continued to rise to a high of 5-point-something on Day 3. That morning, he started having shortness of breath. His oxygen level had gotten so low a blood transfusion was ordered. This day was also my 50th birthday. We were supposed to be on the beach in Florida celebrating but it didn’t work out that way. When I saw the fear starting to show on my stoic husband’s face that morning I began to meltdown. Worst Birthday Ever.
Things started to turn around later on Day 3 as test results came in. The kidney biopsy revealed serious inflammation but no scarring. The nephrologist started 3 days of massive doses of IV pred. By the end of Day 3, the joint pain was completely gone. Creatinine levels started dropping too. Test results ruled out many terrible maladies but the test for Wegener’s was taking longer to come back. As each possible disease that I never heard of was mentioned by various doctors I would quickly google it on my smartphone. I remember being most terrified of Wegener’s because whatever I looked at said something about an 80 % mortality rate. On Day 4, it was down to either Wegener’s or a possible allergic reaction to some kind of OTC medication like Aleve or Prilosec. The morning of Day 5 brought news of positive results for Wegener’s. The nephrologist delivered this news without a lot of embellishment but with some degree of sadness. At that point, we were just glad D was feeling better so we went home with a stack of prescriptions and a low potassium/low phosphorous diet plan. He was put on 150 mg of Cytoxan and 60 mg of Pred plus Bactrim.
My plan was to go straight to denial mode but this luxury was not available to me. Well-meaning family members kept calling with tearful wishes for good luck. They must have looked at the same 80% mortality site I had seen earlier. I got on the computer to try to learn a little more. More gloom and doom. Even a quick glance at this site added to my sense of darkness, disability and even death. My computer became an object of fear to me. At the first available opportunity, I fled to my own PCP to discuss the physical symptoms of panic, fear, and anxiety that were consuming me. Through the miracle of modern pharmacy, in a week or so I was feeling like I could think rationally enough to cope with whatever needed coping with. One day I popped a Xanax and forced myself to sit at the computer and google “ Wegener’s” plus any positive terms I could think of like “success” “living with” “recovery” “remission”, etc… That’s how I found out that our future is not anywhere near as dark as my imagination had led me to believe. Also through the miracle of modern pharmacy, D was showing improvement every day. By his 2 week follow up with the nephrologist, lab work was looking good and he was off the special diet. He was instructed to start tapering the Pred by 10 mg/week during August. The only lingering effect has been stiffness and swelling in his lower legs and feet. That has very gradually subsided. Yesterday he looked down at his feet and yelled “Oh my god!” Of course, my heart sank, thinking it was the return of the red spots or something. He was yelling because the swelling had come down enough that he could actually start to see veins and tendons in his feet again.
So here we are a month later pretty much back to a normal life. We don’t want to be defined by this disease. We’re both kind of uncomfortable discussing it too directly. We call it The Condition or Your Condition. I don’t think D even remembers what it’s really called. He’s not very interested in learning about it. He just wants to be normal. For a while after he got out of the hospital he was still telling people that he had a severe allergic reaction to Aleve. I guess to his ManBrain that was more palatable than having a disease. To the ManBrain, disease equals weakness. We have developed a kind of team approach to dealing with this. I have taken on more of the junkyard dog role. It’s my job to get educated and manage the treatment plan as well as possible. His job is to keep being his adorably positive self, take his meds and report any new or returning symptoms. My biggest fear is that he will disregard changes that might indicate a flare. However, memory of that awful pain and a week in the hospital seems to have made an impression. My hope is that with constant vigilance, we can keep this beast at bay and continue down the path we were on before all the drama hit us. The whole experience has brought us even closer.
Thank you all in advance for being on the team. I have read almost every post on this site and learned so much. However, I still have questions. You’ve been warned.
K (FW WegWife)