CanadianGuy... really???

[Sangye]

It'd be a good idea for your daughter to have a sleep study done. Sleep apnea can worsen a cough. I'd hate to see her stay on codeine for long.

Personally I can't find the love for pred. Okay, yes, it saved my life in 2006, but it's wreaked havoc on my life ever since. Each person's body reacts so differently to it. It depleted me terribly, physically and emotionally. I don't heart pred.

[CanadianGuy]

Hey Sangye,
You are quite a powerful writer on your blog! Kudos on giving us a glimpse into your soul… it is indeed inspiring!
Your suggestion about sleep apnea is a good one; however, her sinuses are so stuffed up and so any sleep apnea machine would be more painful then helpful. That being said… I will take your suggestion to our next visit with the Rheumotologist and see if we can get a test.
As far as the prednisone… my daughter’s hate for the drug is only matched by my desire to see her better. I will keep you up to date on the latest increase in her prednisone and it’s results on the cough.
Thanks again and keep hope alive… I intend to see the end of this disease in my lifetime… and yours!!!!

[Sangye]

You're an inspiration as a Dad. She's very lucky to have you in her corner, cheering her on and running ahead to check that there indeed is a light at the end of the tunnel. I'm sure you're noticed that sometimes it's hard for us Weggies to see the possibility of getting through the day, much less still have hope for the future. She may not express it to you--she might not even realize it herself until later on-- but what you're doing for her is priceless.

[CanadianGuy]

Sangye,
You are a kind and supportive soul... that is undeniable.
Did you ever stop to think that you and all who are in this forum... are that light at the end of the tunnel for those of us who come looking for hope and guidance??? Thanks for being that for me... so I can pay it forward for someone else.
Sincerely,
Canadian Guy

[Sangye]

Very sweet. How many Weggies does it take to pull another Weggie out of a hole? All of them!

[Doug]

Thanks once again Jack! I think that Weggies (new term for me) are well served by people like you who provide such valuable information! (sorry about the exclamation marks! Oh damn... did it again! Forget about it!) ....

One of the zillion things I would like advice on... is the drug Weggies love to hate.... Prednisone. My daughter is 21.... and so she's more worried about the side effects of the drug... than she is about the beneficial effects. As a father.... I want her to get better.... but I also have to realize that she's a young girl who fears gaining weight, hair loss, etc. Any suggestions on what I can do as a father???

One thing I have to say to all in this forum.... Hope is stronger today than it has ever been. I personally think that a cure is not that far off... considering that this disease seems to fall under problems with the autoimmune system. New treatments are on the horizon... just keep hope alive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!

At last! Someone with a worse exclamation point habit than me! (Keep them coming!)


As for things you can do as a father, keep up your concern and support. Weggies need family members like you to get through those changes you mention above and to help them find information that may not already have.

I believe you mentioned elsewhere you hoped to get your daughter to join this forum. Continue to work on that, knowing she will be welcome among us, will have a wide variety of Weggie experiences she can draw on, will be able to vent on bad days, and, in time, help new Weggies deal with this disease (and make her a cool avatar like the one you have so we'll know she's your daughter!).

At her age, things like weight gain and hair loss are very much one her mind, naturally. Get to be my age (61), and surviving WG, being alive, seems much more important than whether I look svelte. I'm trying to do something about the weight now (and have in past as well), but I'm not beating myself up about it.

Recommend she search YouTube for the videos related to Prednisone, for example, or Wegener's granulomatosis. There are a few. (I'd be disingenuous not to mention that I personally have uploaded several videos on these topics, but there are others as well, all of which have something to offer a Weggie dealing with Weggie issues.)

p.s. Prednisone was such a nightmare that it took me three videos to get through how it affected me as a Weggie, two of which were based on a notebook I kept during the highest dosage (80mg) of Prednisone I experienced . I called it my "Krazy Book". For cause.

[Doug]

Very sweet. How many Weggies does it take to pull another Weggie out of a hole? All of them!

Beautifully put! + : ) + : )

[flana]

Thank you Jack!
That Fedora is seriously sweet!
My daughter sees ENT, Nephrologist, Pulminary, and Rheumotologist. Originally she had some renal involvement and a couple of spots on her lungs... but the most obvious signs were the constant stuffed nose, swelling of her joints and the little blood blisters at the base of her finger and toe nails. They managed to get it under control but the stuffed sinuses and dry cough lingered and have only gotten worse. I will talk to her this evening and get an exact description of her dosage... but most recently she's taking Methotrexate (injectable), Prednisone, and Losec. The doctor noticed she was having elevated Liver Enzyme levels and told her to stop taking the Methotrexate for a while.

Have you or anyone else had problems with increased Liver Enzymes?? Today she went to see her Nephrologist... so I'll have more info later.
Thanks again for the welcome Jack!!
Guy

Guy Hello, High LFTs? Yeah Baby, real high!!! AST = 1500, on the 25th of June. But fortunate enough to see a decline already. i am now at 200s. last blood tests are not in my possession just yet.

Is your daughter taking Bactrim? that could possibly be the bad boy causing. Other possibilities could be Hepatitis, Viral, Acetamenophen etc.

Checkout my blog that I just updated with the liver information...

[flana]

Hey Sangye,
You are quite a powerful writer on your blog! Kudos on giving us a glimpse into your soul… it is indeed inspiring!
Your suggestion about sleep apnea is a good one; however, her sinuses are so stuffed up and so any sleep apnea machine would be more painful then helpful. That being said… I will take your suggestion to our next visit with the Rheumotologist and see if we can get a test.
As far as the prednisone… my daughter’s hate for the drug is only matched by my desire to see her better. I will keep you up to date on the latest increase in her prednisone and it’s results on the cough.
Thanks again and keep hope alive… I intend to see the end of this disease in my lifetime… and yours!!!!

Guy, on your daughter's stuffed nose condition - Has she tried the sinus rinse that I have mentioned in my blog? it is THE MOST WONDERFUL THING that happened to my sinuses. It is always clear 24 hrs a day if I use this thing regularly. I also use Ayr (or Rhinaris which I have not used) to moisturize the nasal passage as the rinse dries up the passage, and a little bit of mucus around the nasal passage is certainly appreciated by it.

[not2shortsheri]

The sinus rinse mentioned above works amazingly well. My roomie does it 3 times a day, and it really helps. Taking care of her sinus is really important!!!

As to your daughters overall health, taking care of her with medicine is important. But her mental wellbeing is so important too!

If she's worried about her hair, take her to go get a really cute hair cut. When my mom started chemo and losing her hair, that what we did!! It made her feel 100 times better, and it was much easier to take care of!

Work on a diet with her if shes worried about weight gain.. Make sure to include guilt free weekends to splurge! Its really easy to make sugar free stuff that she can snack on with those aweful prednisone cravings!

Just my two cents =)