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Post by Mini Mia on Sept 2, 2010 17:12:19 GMT -6
Mom's Wegener's Granulomatosis is trying to make a comeback for the fourth time. She realized the third time it struck that her wrist always gave her problems in the beginning, and it's giving her problems _yet_ again. Tests don't show Wegener's Granulomatosis, but they don't like what they're seeing with her kidneys and something else, I forget what it was. Her lungs and kidneys are usually where it hits hard first, once it starts to take hold, and by then she's so tired and run down she is admitted into the hospital. Thankfully, she didn't wait until she started feeling bad ... she listened to her wrist.
The first time she got it I did a Google search. Good news. It very rarely comes back a second time, and when it did, it was kept in remission after that. Yeah. That's how it used to be. But lately, Wegener's Granulomatosis has been coming back repeatedly, and no one knows why. No one knows what causes it, or sets it off. I asked Mom what she had changed in her life prior to getting Wegener's Granulomatosis, and she couldn't remember. (First time was in summer/autumn of 06.) It seems to start showing signs in August, but she usually ignored any hints until she was too worn down to ignore it anymore. (Usually around November.)
So, I asked her if she thought it could be the heat? And she said since getting Wegener's Granulomatosis she's done little to no gardening. She's only been mowing the lawn. As a matter of fact, the year it skipped coming back was the year she didn't mow the lawn. I told her, "Stop mowing the lawn." Anyhoo, they've started her back up on a few of her old meds, but they won't give her cytoxin until the Wegener's Granulomatosis does show up in tests. Hopefully, since they got wind of this while Mom is still feeling good, to some extent, maybe she won't lose what bit of energy she's finally managed to muster up. She still gets tired a lot. Cooking a meal tires her out as if she's run a marathon. But she does seem to get built back up a wee bit faster, and seems to hang onto that energy a wee bit longer.
A friend suggested I search for the best Wegener's Granulomatosis doctors, and the best hospitals for treatment, so I'm fixing to do that now. Maybe someone knows more than we're being told. Why does a illness that used to be very, very rare suddenly start to show up more? Why does it come back repeatedly now, when it didn't before? They say it doesn't run in families, and yet Mom's cousin got it years before Mom did. It hit her kidneys first though, so she's on dialysis once or twice a week.
I'm trying to word the search just right, otherwise it can be like looking for a needle in a haystack. I'm doing:
Wegener's Granulomatosis Specialists Wegener's Granulomatosis Hospitals Wegener's Granulomatosis Research Wegener's Granulomatosis Foundation Wegener's Granulomatosis Association Doctors That Specialize In Wegener's Granulomatosis
If anyone has info on Wegener's Granulomatosis, or has come across info, please do share. Thanks.
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Post by Mini Mia on Sept 2, 2010 20:17:21 GMT -6
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Post by Mini Mia on Sept 2, 2010 20:18:22 GMT -6
Okay. I think I'm done with this for today.
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Post by stepper on Sept 2, 2010 21:10:13 GMT -6
Wow Joxee - I'm sorry to hear your mom is having problems. Tell her we wish her good luck!
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Post by Mini Mia on Sept 2, 2010 21:53:06 GMT -6
Thank you, Stepper. The first time she got it was the worst. She was on a ventilator for eleven days. It had hit her lungs first. When her urine bag looked like it was full of blood, I expected to lose her. That is what finally helped the doctors to diagnose it. Wegner's attacks both lungs and kidneys.
Dad had been in and out of the hospital since August '06 ... mostly in since September ... about a month and a half. Got out a few weeks, went back in a few weeks, got out, and two weeks later Mom went in. She spent most of December in the hospital, but got to come home a couple of days before Christmas. She ignored signs because we were dealing with Dad, and she was going on a cruise, which she missed. She spent that time on the ventilator instead. Her friends left the day after she went into the hospital, and got back the day after she got off of the ventilator. They gave my sister and I a break by visiting with Mom and telling her all she missed.
Our family got to know the ICU & CCU wing of the hospital quite well. It was practically home for four months. I think both Mom and Dad have been on just about every floor/wing of the hospital too. Dad died on one of them. I hate even driving by the place now. Shoot, I hated going in even when my great-niece was born. And that was a joyous occasion.
Okay. Rambling on too much. <zip-it>
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Post by stepper on Sept 3, 2010 16:33:23 GMT -6
Joxee. Of all the people with a right to ramble - I'd put you 'pert near the top of the list. Here you ARE the top of the list. Ramble on. Besides, you are among friends and what your mom has is a serious attention getter. I'm sure it's frustrating to have this stuff keep recurring. Vent all you want - we'll be here to listen.
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Post by Mini Mia on Sept 3, 2010 17:19:03 GMT -6
Thanks, Stepper. I don't know why it feels so selfish to vent. Getting this stuff off one's chest does kinda release the stress, but then the guilt of plowing others under with it sets in. Maybe it's because of the saying: 'look on the bright side.' Instead of dwelling on the bad, dwell on the good. Which is probably good in that it puts you in a better frame of mine. Looking at the good isn't depressing as looking on the bad.
So, yay ... Mom connected the dots and caught it before it got her into the hospital. Seriously, I really, really, really dread going near a hospital. But . . .
Yay, there are places where sick people can go to get better. Too bad that downsizing puts doctors and nurses under tons more pressure and has them running around like chickens with their heads cut off. No wonder so many mistakes get made. Don't blame the poor overworked employees, blame those hogging the money and not using it where it's most needed.
Okay. Enough rambling again, or I'll get started on all the crap that goes on in hospitals. Like staph infections and pneumonia caused by negligence, caused by overworked employees, doing the jobs of 3 or more, who lose track of what's up from down. It wasn't the mistakes, so much as it was the cover ups that followed. Man up and apologize for goodness sakes. Don't tell us Dad died from cancer, when his cancer doctors had already told us they got all they could see, and that he would be okay. Maybe his death _was_ a 'complication' of his cancer ... but it was for sure the staph & pneumonia that killed him. Which could have been preventable. Mistakes get made, we understand that, it's the lying to our faces like we don't know what's really going on that irks us to no end.
Okay ... closing can of worms now. <zip-it>
But I will add: If you have a family member in the hospital, keep someone with them around the clock to stay on top of what's going on. Double & triple check everything the doctors and nurses do and say. Know what meds they're taking and what the dosage is. Confirm with their doctors they are on these meds and it is the right dosage. (Mom was getting 40mg of Lipitor, when she was only suppose to get 10mg.) If the hospital staff puts in an IV and then discovers there's a port, make sure they remove the IV as it can cause a staph infection. And if someone is too sick/weak to do anything but lay there, make sure someone is turning them to prevent pneumonia from setting in. And do try to be nice about it, as these poor nurses are usually doing the jobs of 3 or more staff members who were let go to save on money ... so there's no way they're _not_ going to screw up.
Okay ... if this helps save anyone ... my vent will not have been in vain.
Stay healthy if possible.
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Meg
Whooshite Candidate
Just You Wait.
Posts: 38
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Post by Meg on Sept 3, 2010 18:08:29 GMT -6
You are right in what you say. My mom used to work at the hospital before she got too sick to work. I also almost died at 16 cause of a staph infection in the knee. The docs didn't catch it 'till it was almost too late. I'm sorry what is going on with your ma. I hope you don't mind, but if you'll permit I'll pray for yall.
I got very frustraited having epilespy (seizure disorder) since I was 9. Always changing scripts/meds because my body would adapt. Then came the lupus and fybromialgia. Ya know, I still can't spell any of those right. You'd think after all these years...
Not being able to do what the avarage person can always wanted to make me pull out my hair.
My two younger sisters also want to make me pull my hair out at times.
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Post by Mini Mia on Sept 3, 2010 18:46:05 GMT -6
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Post by Phalon on Sept 3, 2010 19:49:06 GMT -6
Joxie, sorry to hear your Mom is having problems again. Hopefully - for both her and you - she caught it early enough this time that they'll get on top of it before she gets any worse.
I wish there was some kind of advice or knowledge I could offer. I never heard of Wegener's Granulomatosis though, other than what you've mentioned in the past about your Mom. I would suggest joining various support groups for the disease, such as the Vasculitis Foundation. I'd bet they have all kinds of information that can help, as well as probably having monthly newsletters that can keep you up-to-date with the latest research breakthroughs. Who knows - something as simple as changing her diet may help keep the episodes at bay, or keep it in remission longer. It something worth checking into, in the least.
Sending lots of good karma your and your Mom's way.
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Post by Mini Mia on Sept 3, 2010 21:31:34 GMT -6
Thanks, Phalon. I'm glad it was discovered early, and hope it means she doesn't get run down. I just wish she could do a lot more before she lost all her strength. Today is her birthday, and some friends have taken her out. The family celebrates birthdays the Sunday before, if nothing gets in the way. But since Mom's birthday is so late in the week we plan on having it this Sunday ... or Monday evening if my sister has to work.
Of course, don't think Mom won't try to jerk a knot in our tails if she thinks we deserve it. I guess that's a bright side.
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Post by stepper on Sept 4, 2010 0:24:52 GMT -6
If that's all you have to feel guilty about, you've got a light load! But to be honest, I don't really get the guilt part here. That's what friends are for isn't it? Listening? Being there so you aren't alone when facing something?
You aren't alone in that Joxee. A lot of things that happen in hospitals are icky.
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Post by stepper on Sept 4, 2010 0:30:54 GMT -6
Sounds like a lot of hair pulling Meg! I've got a younger sister, but shes 18 years younger than I am. Since we were never in competition for anything we've always been on good terms.
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Post by Phalon on Sept 4, 2010 20:58:38 GMT -6
The only two sisters I have are my daughters. Their ability to make each other want to pull their own hair out, makes me want to pull my hair out.
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Meg
Whooshite Candidate
Just You Wait.
Posts: 38
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Post by Meg on Sept 5, 2010 22:45:04 GMT -6
One of my sisters is 20 and the other is 11. It's the 11yr. old that drives me insane! Phalon, that very first sentence makes you sound like an Amazon. But something else has been driving me insane. The swatches I'm supposed to get in the mail. Where are they?! People tend to steal a lot where I live, and one time someone did open a package that my dad had ordered and taken what was inside. Oy! I think I made myself sick worrying about it as I have a cold along with a fever now. The Beatles once wrote a song: "HELP!" (good song and movie. )
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Post by Mini Mia on Sept 5, 2010 23:28:36 GMT -6
Can you follow the package online? It'll say whether or not it was delivered to your mailbox. Then you'll know for sure if it was stolen from your mailbox or not. Or call the company and ask them to find out where the package is in transit.
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Post by Phalon on Oct 20, 2010 7:09:09 GMT -6
An update on your Mom, Joxie? I hope she's doing much better than when you started this thread.
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Post by Mini Mia on Oct 20, 2010 17:36:29 GMT -6
She's doing well. I don't think she'll ever be able to hold onto any strength gain for very long though. She doesn't let the fatigue stop her from doing what she wants to do, but she does have to take a day or two to get recharged afterward though. She still drives, and goes to the store and other places by herself. Once she's figured out the WG is coming back, the meds help keep her stable and prevent her from getting more rundown.
She and her girlfriends go out pretty much every Friday or Saturday to eat or see a movie. They're talking about going to Bronson soon. Which one of them thinks Mom is too unhealthy to do. She's one of the naysayers, and she thinks Mom is still close to death's door. I hate that Mom can't build up a lot of strength and hold onto it, but I think as long as she catches the return of WG fairly early, she can live a long time. Hopefully 20 or 30 more years. She's in her 70s though, so I really shouldn't get my hopes up too high. I think what makes it so hard to see her in ill health, is that she never had an illness before. And a lot of my relatives on both sides tend to have good health until the end. Which I guess is why I hate hospitals so much. Most of the times, when a relative finally did get ill and have to go into the hospital, they died. If I'd see more sicknesses where people went into the hospital and got well, then maybe I'd see hospitals as healing places, and not where you go to die.
I guess I've been blessed in having such healthy family members. Maybe I should hunt for statics on how many people who go into the hospital die, and how many are healed and sent home.
Thanks for asking.
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Post by stepper on Oct 20, 2010 18:08:10 GMT -6
I wouldn't bother with looking up hospital stats Joxee. Just go give her a hug and be glad she's there to receive it.
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Post by Mini Mia on Oct 20, 2010 18:25:59 GMT -6
No worries, Stepper ... I didn't plan on following through with the 2-minute drill. Just in case I didn't like the conclusions. I figured ignorance is bliss.
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Post by Scrappy Amazon on Oct 20, 2010 19:42:25 GMT -6
Things that make me want to pull out my hair......
People who own 18 chihuahuas and complain because they can't afford to license them.......
People who drop off their dogs because the neighbors kids are teasing them....then come back two days later and want them back but don't want to pay for them.....
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Post by Phalon on Oct 21, 2010 6:20:49 GMT -6
Glad to hear she's doing better, Joxie, and has learned the signs of an onset so it can be treated before it gets worse.
I hope she decides to go with her friends to Bronson. Pfft to that lady who thinks she shouldn't go. If she's well enough to travel, and wants to go, she should do it. Too often people pass up opportunities because of this or that, and never get another chance to do what they want. Opportunities don't often come around twice - especially when they involve a group of people, such as your Mom's friends. Siren and I were just talking in the autumn thread about how hard it is to schedule a vacation with a group; not everyone can always get away at the same time.
I'm so glad Mom took the trip to Florida the spring before she went in the hospital. She and her friend had so much fun, and even if Mom had lived another 10 or 20 years, she might never again have had the chance to go.
Sorry for your jobly woes, Scrappy. I hope that for every complaining or irresponsible owner you have to deal with, there are twice as many you run into that truly love and cherish their pets.
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Post by Mini Mia on Oct 21, 2010 16:26:19 GMT -6
Dad always wanted to see the Redwood forest. The summer before he died, he asked me to find a tour he could go with. Unfortunately, he was several months too late for any tours I manged to find, and he died the following spring. Bells and whistles went off when he asked me to find a tour. He'd talked about seeing those huge, tall trees all my life, and somehow I knew this was a sign that he didn't have much longer to live and he somehow knew it too. He really wanted to see them before he died. I've no doubt it was one of his stops after he'd past away.
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Post by stepper on Oct 22, 2010 19:36:47 GMT -6
I've heard they are quite a sight - some so large the road goes right through trunk instead of around it. That'd be something you just have to see to appreciate.
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Post by Mini Mia on Oct 22, 2010 22:28:42 GMT -6
I've only seen photos/videos, but I imagine it'd be something to see in person. I thought I'd never see Disney World, but I went along when the grandkids were taken. They wanted to spend all their time at the hotel pool. My sister and I told them: "Look, we never thought we'd ever be here, we're going to ride rides. You can swim when we get back home!"
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Post by stepper on Oct 24, 2010 13:25:12 GMT -6
I have to agree with you on that one Joxee. What's the point of going if all you intend to do is sit by the pool?
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Post by Mini Mia on Oct 24, 2010 22:05:51 GMT -6
Really. And swimming in a pond ain't all that bad ... it's swimming at least. And it won't crack your head open if you swim into the bottom either. Kids today. Sheesh. Ya can swim in dirty water just as easily as clean.
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Post by stepper on Oct 26, 2010 20:41:18 GMT -6
I spent a lot more time in ponds and lakes than I did in the one pool I could get to. I don't remember the water being all that dirty though. Of course back then "dirty" was a matter of opinion and subject to interpretation.
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Post by Mini Mia on Oct 26, 2010 21:21:20 GMT -6
Clean = clear (Can see bottom.)
Dirty = murky, muddy, clouded, gray, etc. (Gray from clay. We sometimes swam in a deep creekbed that was mostly dry, except for a few holes here and there.)
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Post by stepper on Oct 26, 2010 22:18:52 GMT -6
Hey Madam P - in case you haven't abandoned us yet - I hear the storm up your way was a bit stronger than anticipated. Hope the bad part bypassed your area!
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