This is not going to be a political diary. I have just had such a stressful week, I just wanted to share (unload?).
I won't pretend that I'm a really popular poster around here, but I have mentioned my husband's vasculitis before when discussing health care. Vasculitis is pretty rare, most doctors will go through their entire careers without ever treating a case of it. It is an immunological disease in which your immune system turns on you and attacks major organs.
He first got the disease maybe 10 years ago. A very talented doctor spotted protein in his urine, and followed up on it, suspecting vasculitis. It was attacking his kidneys at the time, and with excellent medical care and treatment with immunosuppressants, the disease went into remission after a couple of years.
Last fall, it came back.
My husband started to cough up blood about this time last year. Nothing really alarming, just some red in the mucous that he coughed up. He was a 3 pack a day smoker at the time, and I guess we thought that might have something to do with it. He quit cold turkey, and I have to say I admired the way he just acted like it was nothing big. The doctor did a biopsy on his lungs and said that it was either the vasculitis or some other long-winded incurable disease. Since S. had a history of vasculitis, they treated him for vasculitis.
At first the doc prescribed CellCept, but it was way too expensive with monthly out-of-pocket expenses of $350. The doc switched him to Cytoxin with prednisone and also ordered a 3 day regimen of IV steroids to stop the immediate symptoms of coughing up blood. It all seemed to be working quite well until about 3 weeks ago.
It started out with him saying he thought he had something in his eye. I kept washing out his eye, and in the meantime he said he was having "panic attacks" and was short of breath. His eye was the big attention grabber, and I took him to the clinic on the 12th to see the on call doc. When I heard the doc's name, I was a little concerned because I had recently overheard a woman talking on her cell phone about what a dick he was, but I thought that maybe that was just gossip. It wasn't. Long story short, the doc prescribed an antibiotic, which did absolutely nothing to help.
On Saturday the 15th, I took him to the emergency room because he had fluid-filled blisters on his eyeball. The doc admitted him, and he spent 5 days getting IV antibiotics to get the swelling down in his eye. While he was in the hospital, he kept telling me his lungs hurt. I said "Hey, you're in the right place, if you tell them, they should do something". They didn't.
When he was discharged on the 19th, he was coughing up blood again, he was short of breath and his lungs hurt. He called his regular doctor and demanded an appointment with a pulmonary specialist, which was set up for the 21st.
What alarmed me the most on the 21st was that he wanted me to make the 60 mile drive. In the 27 years that we have been together, he has never voluntarily had me drive him anywhere. When we got to Duluth, he was having difficulty breathing. When he got into the doc's office his O2 sats (the level of oxygen in his blood) were at 73, which is alarmingly low. The doc admitted him to the hospital and they attempted to bring his O2 levels up. On Tuesday the 25th, they switched him from a nasal cannula to a full face mask, and his O2 levels were in the high 90's. When I went home that PM, he felt great.
Then I got the 5:30 AM call. He said he was getting worse and I was to get there ASAP, since they were putting him into intensive care.
When I arrived, they were getting ready to intubate him. He told me where he put the cell phone, and they took him away. He has been on the breathing machine ever since. I called the rest of the family, his mom, his three sisters, our three daughters, my son and our nephew and they all made the one and a half hour drive. In the meantime S.'s blood pressure dropped dangerously low, as did his O2 sats. The doctor advised me that if his heart was to stop, there would be no point in resuscitating him if they couldn't get his oxygen levels up. He also said that if that were to happen, that I should request an autopsy. That's about as scary as it gets.
They got him stabilized, and have been giving him blood treatments to remove the excess antibodies in his blood, but "holding his own" is about as good as he's been doing since he's been in ICU. I'm just glad that he was there (in the hospital) when the crisis occurred, because, had he been home, he wouldn't have survived.
So, this is my current health care crisis. It's still pretty scary because until he's off that breathing machine and all those IVs, I could still lose him. I'm an athiest, so I don't do prayer, but I sure can do hope. I hope he makes it.