Update, not so hot news.

[poohkari]

Wade and I are here because of his Goodpasture's Syndrome. It is a very rare autoimmune disease that, until recently, meant certain death. Wade's immune system attacks his lungs and kidneys, and because it is so rare, nobody knows why. Wade was lucky, in the case that he didnt pass away like they said he would, but unlucky because his kidneys are shot. The treatment is plasmapherisis and chemotherapy. Wade is on a TON of drugs, including HUGE amounts of prednisone, to keep the antibodies (GBM levels) at bay. He's gone through so much treatment over the past 3+ months, that everyone was feeling very good and positive.

Well, today, on our last day of NxStage training, we got bad news. The worst news. From his most recent labs, Wade's GBM levels are over 100 - which is really bad. Normal people are at zero. This means we've hit a roadblock. We thought we were well on the way to remission!  This means that this week, I have to take ANOTHER week off of work while Wade gets back to back plasmapherisis treatments, dialysis and Cytoxan (chemo) drips. It all starts tomorrow. This is a huge bummer - of course, his health is our main concern, and it just really sucks, because if he was GBM-free for 6 months, he'd get on a transplant list. Now we start all over from the beginning.

He's going to be on heavy chemo, and the plasmapherisis, on top of dialysis, for at least a week (probably more) so the poor guys going to be feeling like crap. We're just feeling pretty dejected - we were feeling pretty good and excited about NxStage coming home, and now this. UGH!

Send us your good thoughts, and send your best "get lost" vibes to those killah-antibodies of Wade's!

[thegrammalady]

boo....hisssssssss....hope things get better

[Wattle]

  Hang in there Wade.



And a big bbbbbbbbbbbbb {insert Raspberry icon here} to those pesky anti-bodies!   

[Sluff]

Regardless of what you go through please know that you would always be welcome here to post your feelings and not be judged or be a bother. We pride ourselves in being that beacon in the night when you feel dejected, confused or in complete despair, we will always be here to listen and offer advise if needed. With that said, I want you to know that I can feel your energy and I know positive things will happen. Hang in there and hang on to your love of each other because it will prevail. Extra prayers for the both of you tonight.

[Laurie]

  I hope things get better for you two.

[charee]

Thinking of you both hope all goes to plan

[tamara]

I'm tellin them to get on there bike ! 

Thinkin of you guys

Take Care


Tamara xxx ooo     

[Hawkeye]

 

[Ohio Buckeye]

Good wishes, thoughts and prayers for you.

[MyssAnne]

We are here for you, you have our most positive thoughts and strongest prayers, and our biggest raspberries to the nasty GBM levels. Hang in there guys. It's GOT to get better, sometime!!!

[okarol]

Kari,
So sorry about this setback. It's going to be a challenge to keep up your spirits, and thereby Wade's,
but we are here for you and sending you {{{HUGS}}} and power filled GOOD VIBES and prayers too!
 

[angela515]

 

[Razman]

Thanks for letting us know and as Sluff said we will always be here to talk talk to.  I will be praying for you.

[lola]

Hang in there guys 

[poohkari]

thanks so much everyone, it really means so much!!!

[Stu]

I feel gutted for you guys. Don't really know what to say other than that my wife and I have you in our thoughts...

[st789]

Hang in there and keep each other comfort in these trying time.

[skyedogrocks]

Kari - Ugh, I am so sorry.  This just sucks.  Try to keep the faith and know he will get through this.     You both are in my thoughts and prayers.   

[Mongo]

I had a young guy with Goodpasteur's in one of my clinics a few years back. He too had his ups and downs AND eventually got a transplant! 

You and Wade hang in there...I'm sending good, positive and success-filled vibes to you both  and some not so good thoughts to those antibodies!  

Mongo

[poohkari]

Getting better...

Wade got his first set of labs back since starting cytoxan and plasmaphereisis. Good news - his GBM levels are at 26! Which is a whole lot better from 108 just a few weeks ago  His nurses (or girlfriends as i call them) at apherisis are certain he'll be at zero when he's all done! If all goes well, once he gets to zero and can stay there - transplant list time! Wooooooooo!!!!!

How's he feeling? Better. Tired, obviously, but hanging in there, being tough, and STILL hasnt lost a significant amount of hair? How does he do it? I swear sometimes he's superman....

[Black]

Thanks for the good news.    Glad he is so much better.    Yes, I too think he is Superman; are you sure his name isn't Clark and have you seen him without the glasses? 

[kidney4traci]

He looks strong in your picture, and he is lucky to have you by his side.  Hang in there - prayers are coming your way!  Keep up the good fight!    May I suggest you see a good chiropractor, they help increase immune function by clearing the spine of interference.  I can refere you a good one if you email me and give me the city you live in.  Just trying to help...