GoodPastures Syndrome

[ILOVEFLUID]

Does anyone else have or has had GoodPastures Syndrome?  It is such a rare disease, that i have never net anyone who has it.  Do you know anyone who has/had it?
ILOVEFLUID

[poohkari]

Wade has Goodpastures!

There's such a lack of information about it from people who have beat it!

He was only diagnosed 2 1/2 months ago, so we're anxious to hear from people who have been through it!

[Stu]

Ooh! ooh! Me!Me!me!

Do I win a prize?

Sorry, yep, I had goodpastures, about 12 years ago. I would imagine that treatments have improved dramatically since I was diagnosed. All I got was ridiculous doses of steroids along with plasmapheresis.

Then lots of pats on the head, and being told by the doctor that I should probably "get my affairs in order".

Are the treatments the two of you have seen much different to mine in the bow and arrow days?

[poohkari]

Hi Stu!

Wow, so good to hear from someone who's gone through what we're dealing with!

Wade's been on HUGE doses of prednisone and had plasmatherisis several times (it ended in June) along with some plasma transfusions. He is currently on chemotherapy to knock his GBM levels down. When he was admitted in the hospital, nobody had a clue what he had. We were told to make plans as well.  However, when he was finally diagnosed (after 4 days of dialysis and tons of steroids) his lungs were much better and he was physically stronger. His new doctor has a few other new treatement ideas (we switched doctors about a month ago to a much better, cutting-edge doctor) but since Wade's been so responsive to the old treatment, they haven't found a reason to change it up.

Now, we just need to get him a new kidney and we'll be in buisness. As you know, he has to wait longer than most to get on a transplant list - he needs to be in remission. His doctor said that if Wade just had sudden kidney failure, not from Goodpastures, hed have had a kidne by now! Argh!

[Stu]

Doesn't that pred. just suck ass!

I was fortunate that I was actually diagnosed before my lungs started to show signs of damage. I'd been feeling sick for a few days (Played in a tennis tournament on a Sunday, it was over 40 degrees celsius (104f)). Went to the doctor on Monday and had blood test, called to go to hospital on Tuesday, no renal function left by Thursday.

The FGP was actually diagnosed by a thin-needle biopsy. This was one of the most painful thing I have ever experienced. Don't worry though, the biopsies on transplanted kidneys are much nicer, as they don't have to go throught muscle to get at the organ.

I was on dialysis a week or so later (still as an inpatient in the hospital - I was there a little over a month), and I started to shake. Then I started to cough. My wife, Shelley, who was sitting with me at the time (the poor thing, we'd only been married 18 months!), grabbed my hand after I coughed, and it was covered in blood. And I don't mean just a little blood. The whole damn thing was covered.

Straight off into some side room we went, lots of men in white coats stroking their chins and muttering things that didn't engender in me a great deal of hope for the future. There were all sorts of things shoved into my lungs via my nose whilst this was going on. I've no idea what they were or what they were meant to acheive.

I don't remember much of the next 24 hours or so, except the little chrome bowl I had to spit in each time I coughed, and a lot of crying. Obviously someone (I think my best mate at the time) put the call out, because that evening I remember a preocession of friends and family coming in to visit, even into the small hours of the morning. It seemed very ordered, two visitors at a time, no longer than fifteen minutes, lots of tears. After a while I worked out that they were coming into the damed hospital TO SAY GOODBYE!

I'm not sure whether that realisation gave me the strength to fight on, or whether these sort of things even make a difference in those circumstances, but I guess I sure showed them!

The wait is a painful thing. I had a matching kidney waiting for me as soon as I was ready (my mother). I was told I had to be six consecutive months free of the anti-GBM before I could have the transplant. Twice I got to four months then had a positive reading. Damnit.

I can't even begin to imagine what you're going through. I think in a lot of circumstances such as these, the partner actually suffers more than the patient. But just know, there is a light at the end of the tunnel, and the two of you can still have a wonderful life together.

[Ken Shelmerdine]

Does anyone else have or has had GoodPastures Syndrome?  It is such a rare disease, that i have never net anyone who has it.  Do you know anyone who has/had it?
ILOVEFLUID

What's good pastures syndrome?

[Stu]

What's good pastures syndrome?

A horrible autoimmune disease which attacks kidneys and lungs, amongst other things.

[Ken Shelmerdine]

What's good pastures syndrome?

A horrible autoimmune disease which attacks kidneys and lungs, amongst other things.

Sounds like whoever invented that name was having a sick joke!

[poohkari]

Doesn't that pred. just suck ass!

I was fortunate that I was actually diagnosed before my lungs started to show signs of damage. I'd been feeling sick for a few days (Played in a tennis tournament on a Sunday, it was over 40 degrees celsius (104f)). Went to the doctor on Monday and had blood test, called to go to hospital on Tuesday, no renal function left by Thursday.

The FGP was actually diagnosed by a thin-needle biopsy. This was one of the most painful thing I have ever experienced. Don't worry though, the biopsies on transplanted kidneys are much nicer, as they don't have to go throught muscle to get at the organ.

I was on dialysis a week or so later (still as an inpatient in the hospital - I was there a little over a month), and I started to shake. Then I started to cough. My wife, Shelley, who was sitting with me at the time (the poor thing, we'd only been married 18 months!), grabbed my hand after I coughed, and it was covered in blood. And I don't mean just a little blood. The whole damn thing was covered.

Straight off into some side room we went, lots of men in white coats stroking their chins and muttering things that didn't engender in me a great deal of hope for the future. There were all sorts of things shoved into my lungs via my nose whilst this was going on. I've no idea what they were or what they were meant to acheive.

I don't remember much of the next 24 hours or so, except the little chrome bowl I had to spit in each time I coughed, and a lot of crying. Obviously someone (I think my best mate at the time) put the call out, because that evening I remember a preocession of friends and family coming in to visit, even into the small hours of the morning. It seemed very ordered, two visitors at a time, no longer than fifteen minutes, lots of tears. After a while I worked out that they were coming into the damed hospital TO SAY GOODBYE!

I'm not sure whether that realisation gave me the strength to fight on, or whether these sort of things even make a difference in those circumstances, but I guess I sure showed them!

The wait is a painful thing. I had a matching kidney waiting for me as soon as I was ready (my mother). I was told I had to be six consecutive months free of the anti-GBM before I could have the transplant. Twice I got to four months then had a positive reading. Damnit.

I can't even begin to imagine what you're going through. I think in a lot of circumstances such as these, the partner actually suffers more than the patient. But just know, there is a light at the end of the tunnel, and the two of you can still have a wonderful life together.

Ugh, Stu! Your story sounds so familiar! Wade had gone to one of those walk-in clinics on Wednesday - Friday we took him to the ER because he was gray and couldnt breathe. At the clinic, they said he had pnemonia - and he was coughing up tons of blood. He had been showing signs of Goodpastures for about a year prior, but s*!t didnt hit the fan until that week. Friday night, they werent sure hed make it through the night - they gave him tons of prednisone (they said the amounts they gave him could have killed him as well) and hooked him up to dialyze. The nephrologist pulled me in the hall as they were getting everything started, and facing the open door of Wade's room, told me how sick he was, and I needed to call any family members of his, and that the only thing they could do is "make him comfortable" and put him on a respirator. Wade heard every word. However, just so you know the kind of guy Wade is - he saw me trying to hold my shit together, and promised me he wasnt going anywhere and that the doctors full of bull! Since I wasnt family, and he was so critical, they kicked me out. The worst part of this entire ordeal was having to leave him that night - it was the only time I saw him tear up, and it broke my heart having him beg for me to stay. His parents live in Memphis, a 14 hour drive, and they were on their way, so I really was all he had at the time. Then, the next morning he called me at 7 am, cussing up a storm, asking me where I was!

The part that kills Wade the most is that he filled about 5 of those pee-jugs with piss AT THE HOSPITAL when he was in the ER! Argh!

Wade and I chose not to tell our friends how sick he really was - I couldnt deal with the constant calls from everyone we knew as it was - and we didnt want anyone to freak out. Of course, he had TONS of visitors, but they were kept in the dark for the most part, which, looking back, seems to have been a good thing. We did have a few friends sneak into the ICU to see him when we were told he couldnt have visitors - which was awesome. Especially because one of the guys who snuck in has a tattooed FACE. I guess the nurses were scared?

[Sunny]

I had GoodPasture's Disease six years ago and was treated for it with cytoxin and prednisone. Now I'm left with 30% use of my kidneys with the ever-looming possiblity of complete kidney failure at any time. I have blood tests each month to check my kidney funciton and take highblood presure meds to save whats remaining.

[goofynina]

Sunny, i hope what you have left lasts a long long time, just keep taking those meds and checking that blood and remember, you always have us if and when you do need dialysis (or anything else for that matter)    Not to toot our horn but we are a pretty Damn Awesome Support Group    

[angela515]

I noticed after reading these posts that they use the same kind of treatments for your 'Goodpastures Syndrome' as they did my Lupus. I was treated with high doses of Prednisone and years of using Prednisone.. I also had my kidney failure reversed when I was 15/16 from cytoxin (18 months), and Lupus is also an auto-immune disease (of course totally different). It's weird the similarities of some of the treatments.

[poohkari]

Sunny, how did you get diagnosed without losing your kidneys? You must have had a superdoc!

We are actually looking at options for a lawsuit, because 4 months prior to his diagnosis and subsequent kidney failure, Wade had seen a urologist several times for a small tumor or a cyst on his kidney. He was peeing blood for a while, and had all the other classic symptoms. His urologist, after doing that whole camera up the dick thing told him it was nothing and sent him along on his way. If he had only done the right test, we'd have been in the same boat as you ...

[Sunny]

Yes, she sort of was a Superdoc! She was fresh out of med school and very young.I joked she looked like my teen-age kids. She told me being fresh out of med school made her very aware of weird diseases she had come across in her studies.She referred me to a renal specialists also fresh out of school who seemed to have innovative ideas on treatment and use of high blood pressure meds once treatment was finished. I lucked out. I hope things work out well for you. I sure think about you a lot and wish you the best possible outcome.

[poohkari]

Thanks for thinking of us! We appreciate it. I only wish Wade was more interested in getting on these boards himself. However, I do tell him everything and he is super excited. Wade is dyslexic, at the lower end of the range, and I know he's really self-conscious about misspelling and grammar and things. It's the unspoken reason why he's not here.

I think with him being back in the hospital, for a second time, because of dialysis complications, it just really reiterates to everyone how badly he needs a kidney to get back to life. We already have about 15 people ready to get tested!

[poohkari]

Also, a question for all the Goodpastures patients - Have you ever met anyone else with it? You guys are the only ones.

[Sunny]

No, I've never met anyone with goodpastures. Neither had my renal specialist at Stanford 3 yrs ago. They were calling it Anti-GBM Disease. As for dyslexia, Wade might be able to use the spell check. It depends on how his dyslexia manifests itself. Have you gone to : www.healingwell.com/communuty. Type in Good Pasture's disease in their search spot and a goodpasture's forum pops up.