My new adventure with Wegener's: The beginning.

[mishb]

Your trip on the Appalachian trail sounds like great fun, my favorite author Bill Bryson wrote a book about his experience on it:
A Walk in the Woods - Wikipedia, the free encyclopedia

I was going to say the same thing, as soon as the Appalachian Trail was mentioned.
I loved following Bill Bryson and his "mate" on the trail and it really puts you there.

What an experience you have had Andy - not only on the trail but with the WG.

I'm glad you have found us

I think Sangye lives in Maryland.

[drz]

Hey Andy! Welcome to the forums.

How come everyone else gets a parade of doctors but I never got one I like parades.

Your trip on the Appalachian trail sounds like great fun, my favorite author Bill Bryson wrote a book about his experience on it:
A Walk in the Woods - Wikipedia, the free encyclopedia

When I was first diagnosed and in the hospital I had a parade of doctors several times a day as all the doctors I was seeing brought in all their residents and interns and even med students to see the "Weg case". I hope I don't have to see that parade again for a long time.

[Wegetarian]

Ok, sorry - it doesn't sound like a fun parade... Actually I kind of had a parade when I was in for the brain surgery and a world renowned surgeon took his tour and had a bunch of interns following me - but again they had no interest in me since I was ready to leave the hospital

Andy, do tell us why you chose that screen name! For some reason I keep thinking of Buzz Lightyear

I was going to say the same thing, as soon as the Appalachian Trail was mentioned.
I loved following Bill Bryson and his "mate" on the trail and it really puts you there.

I think I read all of his books. It was actually his book "A Short History of Nearly Everything" that got me reading again. I assume you have read In a Sunburned Country as its of Australia? I remember it also being very entertaining.

[SpaceflightAddict]

I did not read "A Walk In The Woods," but I did read AWOL's book, and that nearly scared me off from doing the trip. I had ZERO hiking experience when I started off on day one. If I can get this Wegener's under control in a few years, I really want to go back and do the whole trail. It was really the most amazing experience of my life!

If you guys want to see some pictures of my trip, here you go: AT Pics part one - Imgur

I'm the fat guy with long hair that turns into the fit guy with long hair near the end of that album.

I was feeling so sick before I knew I had Wegener's, that I got tired of taking care of my long hair, so here I am now, Bell's Palsy and all: Bellsy Smiley - Imgur

As for the "Parade of Doctors" my favorite part was when there was a group of ten or so of them standing just outside my door, talking about me, completely oblivious that I was hearing everything, I would sneak up to them and say "Hi guys beautiful day to talk to me huh?" That got a chuckle out of some of them. I made it my goal to have as much fun as possible, and make as many people smile and laugh while I was hospitalized. I think I did a good job.

Working on part three between some things, I will get it up soon.

Smile every day!
-SpaceflightAddict

[TommyG]

Welcome spaceflight

Thanks for posting the pictures, looks like a great trip. I have fond memories of a similar three month backing backpacking trip in the Hawaiian Islands. I also came down with bells palsy a couple months after being diagnosed. In in addition I had severe moonface from high-dose prednisone and saddle nose. I remember seeing a picture of myself and wondering who the heck is that guy and what is he doing with his arm around my wife and daughter. Fortunately the moon face and the Bell's palsy are long gone. I find that having patience is important when dealing with Wegeners and a good attitude along with a sense of humor, which you certainly have

Best wishes,
tommyg

[SpaceflightAddict]

Andy, do tell us why you chose that screen name! For some reason I keep thinking of Buzz Lightyear

Both of my parents worked for NASA, so I had a lot of space and science exposure as a child. I am a bit of a science geek you could say. Rocket science is freaking cool, and there is nothing quite like watching a controlled explosion send something up to fly the cosmos. I got to watch Lunar Atmosphere and Dust Environment Explorer - Wikipedia, the free encyclopedia launch from Wallops Spaceport seven days after I was released from the hospital, and that was one of the coolest launches I have ever seen.

Good Morning again everyone!

Thank you for all the kind posts! This is the first time I've really been able to explain my experience to people that understand. I can't seem to get it through to my family just how sick I actually am, and how much worse it could of been had i not been diagnosed so quickly. All they get to see is me with all the energy in the world and a great attitude about life.

Anyways, prednisone is a hell of a drug.

I am in the very early stages of treatment right now, so I am on 60mg/day of the stuff. The side effects are... interesting?

I am not sure why, but I am happy about everything! I locked my keys out of my car for the first time ever the other day, and just laid out on the trunk thinking of how beautiful of a day it was while I was waiting for AAA, without a worry in the world.

I have tons of energy, my house has never been this clean in my life. I have cleaned everything, made repairs that i have been meaning to do for years, all sorts of stuff. Hell, I even replaced that drippy sink that's been bothering me for five years.


Now, that is nice and all, but the other side of prednisone really blows.

My short term memory is TOAST. I cannot remember anything unless I write it down and read it over and over again. This is a very rough adjustment for me, because my entire life my mind has been like a bear trap for information... see it or hear it once and i have got it.

I am also having issues with long term recall. Everything seems to still be in there, but sometimes it takes a while for it to come back up to the surface.

Ah, and "senior moments," like checking the mail four times that day when you KNOW it came the first time you checked, locking my keys in my car, walking to the grocery store for a gallon of distilled water for the nasal rinse, and only coming home with half a cake; but damn it was a good cake.

The memory effects are by far the scariest thing I am going through right now.

I have been able to cope with this decently though, If yall have any ideas on how to improve, please let me know. I am taking lots of detailed notes about everything, and it helps. Also no more of this "I will put that in my calendar." If it needs to go into my calendar, that happens right there and then.

Thank goodness for technology though, there is an app called Keep on Android that lets you take any kind of note or make lists, and set it to remind you about it whenever you choose.

I have a checklist on the front door that reads "Before you leave, answer all of these questions: Do you have your phone, wallet, and keys? Where are you going?"

I really hope my memory comes back as my dose tapers over time, but its gonna be a while before that happens probably.

Breakfast of Champions:

What's for breakfast? An omlet, and fistfull of prednisone and cytoxan! Mmmmmmmmmmm.

"Wait, you are hungry again? Diden't you just finish breakfast ten minutes ago. Goddamnit."

This appetite is nuts, I know I am going to gain weight on the prednisone, but this is just crazy how hungry I always am. I have become much better at portion control, but driving by any place that serves food is tempting fate. I have gained 12 pounds in the month since I was discharged, even though I am walking almost ten miles a day, the weight is still piling on.

But hey, at least I am happy all the time LOL!


If you have any advice for me on how to deal with these issues better, please please let me know, Out of all the problems I have, destroyed sinuses, bells palsy, deafness in the left ear; beyond all of that, the items listed above are having a much bigger impact on my life, and I want to deal with them before they get any worse.

Have a wonderful day everyone, time for my breakfast of champions!
-SpaceflightAddict

[Wegetarian]

Here is a recent thread about Prednisone, there is a good link to Hopkins about side effects with pictures:
http://www.wegeners-granulomatosis.c...e-effects.html

Dunno how happy you will be to read it, but at least for me it was nice to know what was happening due to Pred and that it wasn't Weg. I guess the effects should go away once we get off the drug.

Have a wonderful day everyone, time for my breakfast of champions!
-SpaceflightAddict

When I was taking 80mg / day I felt really weird. Like hyperactive (can kind of see that in your post too ) and felt a bit down and was easily annoyed. Darn I was hungry too! I mean I so wanted to have a big bowl of pasta before going to bed, and sometimes woke up at 3am to make myself a small snack of like 4 sandwitches... A Sunday morning I also made myself a breakfast of champions, a pizza with a lot of toppings (then again the kids woke me up at 6am so it was almost lunchtime)

Now I'm on "just" 40mg and feel a lot better, I don't get as tired and my appetite isn't as insatiable. I still don't mind having two lunches, but I feel I can do with one. There is also a dietary PDF here in the forums, I think in the general weg section, you might find interesting. I tried leaving away pasta and eating a lot of salad instead.

I'm not sure if my memory is affected. Although yesterday was a fairly long day, and after the support group meeting I attended I got a ride home from this nice lady who lived near me, I took public transport to the meeting as I had looked that its a quick route and I wasn't sure about parking spots. Anyway, she drops me off a at a buss stop near my home and I start walking home before I realize that I had taken my car to the train-stop to save some time. doh! Oh, well guess I left my brain at the meeting. Just hopped on a bus and went to pick up my car. We had driven past the place I parked, but I completely forgot about my car

[gilders]

Did high dose Pred make me forgetful?............I can't remember

It certainly made me hungry. I remember the day when it hit me that I was eating way too much - I was munching my way through Chinese take away and carried on eating bits in the fridge. I started getting really bad stomach pains. I was still hungry and enjoying stuffing my face, ignoring the pain. The pain got so bad I stopped eating and saw all the empty food wrappers. There was no stomach problem per se, I'd just ate so much my stomach at bursting point. Luckily I did no permanent damage.

It's great to hear you're feeling so great. I think it helped that you started treatment before it spread to areas such as kidneys.

[SpaceflightAddict]

Here is a recent thread about Prednisone, there is a good link to Hopkins about side effects with pictures:
http://www.wegeners-granulomatosis.c...e-effects.html

Dunno how happy you will be to read it, but at least for me it was nice to know what was happening due to Pred and that it wasn't Weg. I guess the effects should go away once we get off the drug.

I actually met Dr. Philip Seo from the Hopkins Vasculitis Center while I was hospitalized, and he did a very good job of explaining the side effects I was going to have, and has been spot on so far. I suspect him or someone working for him wrote that article, because the wording is very similar to the conversation I had with him.

I really like Dr. Seo, he is very straightforward and no nonsense, has a pretty good sense of humor, and told me I could still drink a beer every now and then! I was convinced that I was never going to be allowed to consume alcohol again in my life, and he said yah, go ahead and have one.

My first night home from Hopkins, dinner was a huge order of Chinese food, and a nice frosty beer.

[DJS]

Pred filled out the wrinkles in my wife's face, now they are coming back and she gets to look like her grandmother again. She never did gain weight though, I think that it must have been because of all the water that she drank so that the cytoxin pills didn't damage her bladder and kidneys. Those pills did a number on her hair any way. I think she resisted eating too much just out of habit, she has always controlled her weight. Her hearing in her left ear was destroyed by nerve damage, it will never come back, so she has an implant called BAHA where the sound from her left side is transferred to her right or good nerve. You should get your hearing checked by a ENT person.
Dennis