A fun day with family and friends

Treatment began with putting in a permacath...for her dialysis port, and dialysis was started. She also started high doses of Prednisone and oral Cytoxan over the next few days the rashes started to improve however her breathing became more difficult, a bronchoscopy was done and confirmed Vasculitis had hit one lung and it was filling with blood. She was already in critical condition and this just made it worse. Plasma exchange treatments were started and she had 8 of those over time. She was moved to ICU after 21 days in the hospital as she continued to worsen with the lung involvement, they felt she may need to be on a vent. But the Bi pap machine proved to be enough and she tolerated it well 24/7. She was in ICU for 8 days and those were some of the few days I didn't sleep right there with her as staff was watching her around the clock. She was also started on the experimental drug called Rutuximab and the Cytoxan was switched to the IV infusion and finally the disease stopped progressing...it was then a matter of time for her body to reabsorb the blood from the lung hemorrhaging. I forgot to mention that she was unable to eat from the time she entered the hospital and for 2 weeks had nothing, then they encouraged eating as the stomach pain became less intense but she was only able to eat tiny amounts equaling 150 - 200 calories a day!!! So she had no real nourshiment until the feeding tube went in on day 21. There were issues with that as well so for 50 days she had very little nourishment and in the month an a half she was there she lost 40 lbs.

The big journey begins

April 24, 2009 A. went to the emergency room she had been nauseous most of the month but in the previous 5 days had not been able to keep anything down and she knew something was really wrong. She was admitted, her boyfriend was busy the next few days and due to lack of communication with him I asked a friend from Phoenix to go to Tucson and see how she thought A. was doing and if I needed to be there. She was there on Sat. and called and told me that she felt I should be go down. My home being in Montana and a 19 hour drive if I could go straight through...I made it in 22 1/2 hours leaving on Monday and arriving Tues. morning with a 2 1/2 hour rest in Flagstaff.
I found A. in a private room thank goodness because I had my bags and was moving in with her.
There was a window-seat type bench and it became my living quarters.
The doctors knew that Adriann had kidney issues but hadn't classified her as kidney failure yet however my friend said she felt she was. They thought the kidneys were in shock due to the vomiting and use of Ibuprofen which she had a prescription for 800 ml. 3 times a day for her pain from Elher's Danlos Syndrome. So they were giving her IV fluids, nausea medication and waiting....but to me if the kidneys weren't working and they were filling her with liters of fluid that weren't all coming out how could this help!!!??? But we waited. Some numbers started to improve and then overnight she got that nasty rash on her legs, elbows and torso (see posted photo)and then another night she got blood blisters on her feet and said it felt like her feet were on fire. Then yet another night her pinky finger and ring finger on her left hand went numb and were useless... Her team of doctors was growing to with each new thing. A skin biopsy was done and vasculitis was confirmed. Then the kidneys nose-dived and a biopsy was done on them and Wegener's Granulomatosis was confirmed......

Now that we know some of the symptoms of Wegener's we also know that A. had symptoms 3 years ago. The first symptom was an eye infection, it was severe and lasted for months and she said it felt like a knife stabbing her eye. She went to an eye doc and was given steriod drops and glasses since her vision was affected. Then she moved to AZ and miraculously the infection finally went away...the drops hadn't done much so we chalked it up to the glasses. She started having sinus infections for the first time in her life...another symptom they continued on and off for the next couple years. Then last summer another eye infection in the other eye. Steroid drops new glasses an eye specialist and a rheumatologist and still this was not caught as vasculitis. To think it could have been brought under control back then but it wasn't to be. Last March we went down to visit and she had a weird rash on her legs...one of the biggest symptoms of all and she couldn't get the rheumatologists office to call her back for an appointment if only then....but no....

Before Wegener's, during and now

T

The Family

We have a great family...it's a good size. My husband and I met 32 years ago at the Big Sky Ski Resort in Montana. My folks owned 2 of the first hotels in the area called The Hostels way back then. My father in all his wisdom prepared me for another working season by reminding me to please be nice to the employees! Apparently they thought I was stuck up and aloof...when in reality I was horribly shy. So with my instructions to be nice at the forefront I met the two first new employees for the winter...and one....well....one; well he must have wanted to impress the boss with how good he could get along with the daughter and I followed my instructions and was very nice to the one employee anyway!! We married a year and a half later and have had a lot of adventures along our way. We have 2 children of our own, then we started with foster children and had 14 over the years one we adopted and one we just kept he was older and adoption wasn't in the plan for him but he's ours non the less and we're his.
The family's growing too. We have 2 grandsons, one granddaughter and one more granddaughter on the way and due to arrive in about 4 weeks or so!
So we've had a lot of laughter and tears along the journey and the journey twists and turns and the latest story may help some of you out there....
Our daughter's new and ongoing battle with Wegener's Vasculitis. Watch for more posts as I tell you her story.