Well it's been awhile since my last post and we have had some exciting developments...
Adriann's nephrologist decided to stop dialysis to see just exactly what her kidneys were capable of on their own with just a diuretic....so the experiment started...her creatinin was just above 4 at the start..it bounced up to 4.6 at one point but then dropped again down to 4 then 3.8 as the weeks passed and has been down to 3.5 no one expected her to be able to do this! But just last week at the 7 week mark they took the port out of her chest! Also the Wegener's anti-bodies are undetectable in her body! Another surprise. For someone who had it as severely as she did, they didn't expect the anti-bodies to be gone 5 months into recovery. They say when this happens the chance of recurrence is lessened.

Long term she will still need a kidney transplant at some point so we know dialysis will have to start up again but it would be amazing if it were 5 or 10 years down the road instead of the 18 months for a transplant that had been expected.

She is still weak, one day of taking care of her toddler and she's in bed for the next couple. Every time her stomach hurts she panics ....afraid that her kidneys are failing already. But she's happy too...it's kind of a roller-coaster. She has good days and bad. She's letting her hair grow back but still has 2 more rounds of Cytoxin infusion before she starts a daily oral medication. We aren't sure about the Rutuximab in Dec. but the Rheumatologist will let us know.

She says she almost feels like a girl again...if her hair comes back thicker than it is now and her face loses more puffiness she'll be happy!

Butte dialysis here we come!

Monday our driving miles get dramatically shortened A. starts in Butte!!! I can work part of 3 days a week afternoons but still need to find someone to watch Mac. for us...it'll happen!!! Oh gals that have been missing being waxed.....get ready to grin and bare it!!!!

Another day another dollar

Zippity doo da.... A.'s hospital bill is up to $700,000.00 and climbing how high will it go.....who knows!!! Go insurance!!! Fingers crossed and awaiting the outcome!
So here's the scoop: A benefit is planned for Adriann on Sept. 5th starting at noon in Washoe Park, Anaconda MT. A horseshoe tournament is the main event....2 member teams and cost per team is $30.00 There will also be a picnic and volleyball and a $5.00 donation is asked for that. Teams must be signed up by 8/27....no time to waste! You don't even have to play..just come join the fun there will also be a silent auction with fabulous items!!!! No kidding really fabulous!!! Call Alexis @560-1795 or Joan @ 560-0899

Today I actually got to go to work for a little while...wax on wax off a little facial hair tinted some brows and lashes.....gotta love it!!!! Nothing like ripping off someone elses hair to relax!!!!

A little night crawler.....

I fear my grandaughter is going to be like me...no need for an alarm clock... two nights waking up at the same time and a wonderful new habit is formed. So A. helped her out of bed tonight at her new wakeup time of 12:30 a.m. so she could come and get me to rock her again for awhile. So I've rocked her for a bit and then put her back in her bed and waallaa I have a little computer time..I wonder how many nights in a row this will go on. At least I've been going to bed the last few nights a little earlier in anticipation of this so I get a nap before she's ready to get up.
I actually think it's her tummy waking her...her food intake is changing to real stuff now and she doesn't chew it well so I think her digestion is the issue....I'll have to start her on some enzymes to help that process!!!
So I haven't mentioned yet the arrival of our newest granddaughter...
Our eldest son C. and his wife L. have a new little beauty who arrived just a couple weeks ago! We had hoped our house would have sold long before now...we had planned to be closer to them so we could help with babysitting...it'll happen when the time is right. Unbelieveable that we haven't gotten to see her but that first day!!! Chomping at the bit to get back but it's not easy with A.'s schedule I'm hoping that a friend can help out this week with a Missoula run so R. can go with Mac and me and we can enjoy a day of visiting and photos of the new family treasure!

Today I had a little sit-down chat with A. and told, yes told her that she has to move more, that she wouldn't get away with not exercising if she were in a rehab. center that it would be part of her daily schedule and conveniently we have a treadmill right downstairs so there's no reason she can't walk every day...starting slowly and building up! That walking will no doubt make her back hurt more for a bit as it gets used to the change but will feel better in the long run! That it has been easier for us not to say anything and thus avoid the dreaded 'stink eye' than confront the issue until now but it's too important to avoid...and went on to say that she'll have to start taking over the mom roll with Mac instead of having me do it all......I'm sure it wasn't what she wanted to hear and she'll have to mull it over...did she walk take a little walk today....noooooo but maybe tomorrow! She was out of bed a bit more today...of course I stripped her bed and washed the sheets that took awhile!
Well time to go peek and see if Mac is asleep...at least she's quiet about it!!!
Tah

A gal on the go!

Recovery is a long slow road!

Adriann's blood sugar issues are improving as the prednisone is tapered down. She is down to 15 mg. a day now and only needs insulin about once a day instead of 4 times. She was really looking forward to that. I think she thought she'd really perk up with that change but she hasn't. She is tired of dialysis we drive 660 miles a week for her 3 sessions MWF we have to go to Missoula so the docs can closely monitor her. Since she can't have heparin, she was constantly clotting the machines..once or twice a session and the sometimes even 3. If that wasn't frustrating!!! Now she's on Coumadin (sp) and the sessions are finally going better, however it's still a really long day. On a regular dialysis day we leave our house around 11:00a.m. and get home around 7p.m. when we have another doc appointment or Coumadin clinic (which is once or twice a week) we have to leave around 9:00 am and still get home around 7. Her baby and I take her 2 days a week and 1 day R. takes her over so Mac and I can have a day at home, Mac needs a few days in a row without being stuck in the car...she's a trooper though! Her favorite movie is 'Bolt' and she watches it over and back unless she's napping! There's no more sitting with A. in dialysis for me...I have to keep Mac entertained for the day!
So needless to say A. is sick of all the traveling...on her off days, she usually stays in bed, encouraging her to get up and exercise is a trick. She sleeps, reads, and eats....repeats.... no energy. I suggest she gets up and walks a little outside with Mac while the weather is still good but it's a struggle. I've told her she has to be in good shape for the kidney transplant...I'm sure she'll need one...her urine output is decreasing. Maybe a re-adjustment of some of the meds will be helpful. She's never been one to have a ton of energy but she needs to try a little harder for her daughter in my book....she's going to have to be the mom again one of these days. I use my YL oils on her, but don't see much of an attitude difference....(I do see very swift improvement using them when she's feeling a sniffle coming on though...I can nip that right in the bud with the oils applied topically.)
I'm sure it's frustrating for her to watch Mac come to me for everything but I'm where the action is and she's a busy girl!!
The doc hopes that she can start dialysis at a center just 25 miles away from us in the next month or so....my fingers are crossed! Then I could work a few hours in the salon on those days!
I'm freaking out over my bills and not working. I'm up a lot a night stewing on how to earn money! I'll have to either take Mac to work with me or find someone to watch her for a few hours. I can't do a daycare because A. is still on chemo and has a low white cell count and we can't risk her catching something....with all the bugs floating around, daycare is a prime spot for little ones to spread illness and we can't risk Mac being exposed and bringing it home to A. the oils do great but we don't want to have more exposure than we have now...We use Thieves Spray on grocery carts etc. but I can't keep Mac in a Thieves bubble so less exposure is better! My quandry....how to earn money through this....I'm trying to get hired as A. home health worker but don't know if I can...am waiting for an answer on that.
So....my niece and I are going to publish a book on using essential oils for animals....I've had most of it ready for several years and now she and I are putting it together for real. Hopefully it'll sell!
Then we've pulled out one of my children's stories and have dusted it off and will see about publishing that one. My niece did her own book 'Step by Step Guide to Teaching a Miniature Horse to Drive' Scroll down to 'my favorites' you can click on it....she did fantastic with that book so she's taking on my books with me. It would be awesome for her to get her own little publishing place going!
Bills can either drown you or put you into creative thinking mode...I vote for creative thinking. The wait is still scary but I keep believing it's all going to work out.
That's all for tonight folks.

Aetna Re-adusted!!!!!!!

Whew!!!!! Just got off the phone with Aetna and they re-adjusted and haven't sent out the new form yet!!!! But they paid the bill...which was actually 235,00.00+ that they originally said Adriann was resposible for!!!! We are now breathing easier!!!!!! Near collapse with relief!!! I guess I can take their name off the bad list!!

Insurance!!!!

Adriann was so relieved that one of her benefits at work was Aetna Insurance.....oh but it's not all she thought it was!!!!!
We are just now having the bills roll in and discover that Aetna doesn't pay hospital room and board or other hospital incidentals!!!!! So at the moment the running total she is responsible for is $192,000.00. Isn't trying to get well and dealing with all her health issues enough!!!! Now Aetna wants to kill her with worry!!!! Thanks Aetna!!! I'll be calling!!!!

She was heavily medicated and would hallucinate which was interesting...once she was saying, "It's hurtful, it's hurtful" and when I asked her what was she said, "The pettycoat" I asked her what color it was and she said it was 'burnt orange' I replied that, that was a pretty color and she said, "Not on you!" She also informed me that I needed to get off the counter to which I assured her I would....I can only hope in her mind I was looking very cool.. like doing the coyote ugly dancing on the bar counter.....probably not though. She doesn't remember very much of her time in the hospital. I on the other hand am the memory keeper of it!
My sister came down as we were nearing our time to leave and stayed 2 weeks as we prepared Adriann to come home to Montana to continue her recovery. So the both of us slept in the hospital room with Adriann! I'm sure the staff thought we were odd but there was no getting rid of us!!! The first day my sis was there I left for the day and she stayed with Adriann. I took the baby for a day of play... When I returned later it was to discover Adriann terribly ill with a violent headache, pain and nausea out of control. I was to discover the morning nurse had not given Adriann any of her meds that morning since she was hurried out to dialysis by 8 am so the nurse unsure whether she should have her meds before didn't give them and didn't follow up when Adriann was back in the room in-between other tests. At 7 pm the nurse came in and said she still had Adriann's 7:00 am meds in her pocket...well you can imagine I freaked out! No wonder Adriann was sick!!! She hadn't gotten her prednisone which was still in the very high dose stage or anything else and her body was going nuts!!! I told the nurse she always had her meds in the morning before dialysis and by that time the nurse was pulling them out of her pocket and I was telling her which ones Adriann needed immediately!!!! Maybe within a half hour Adriann was free of all the pain again...good grief a day of torture all because the nurse forgot to give her the medicine!!! Let me tell you...that didn't happen again!! My sis didn't know the nurse had forgotten... all she knew was that Adriann was scary sick and how were we going to take care of her at home! We have not had a problem like that again!

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.