I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: poohkari on July 17, 2007, 07:58:34 AM
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Hello guys,
I've been lurking for far too long - and, as you all know, finding honest information from real people who have gone through this whole nightmare is really hard to find. Here's why i'm here:
My gorgeous, wonderful 25 year old boyfriend, Wade, had been having some (what we thought!) were minor health issues over the past year. He coughed up blood and went to a doctor, who told him he was bursting capilaries in his lungs because he was such a big guy and smoked so much. He was always exhausted - which we assumed was from him pulling 60+ hours a week as a chef. He began having traces of blood in his urine - even went to a specialist! - and was told it was "nothing". In May of this year, he got really sick. We went to a Patient First (evil! evil!) and they told him he had 5 inches of fluid in his lungs, shot him up with antibiotics and sent him on his way. 3 days later, he was admitted into the ICU, where he spent a month. The doctors couldn't figure out what was wrong with him, and we were all told to make plans, that he probably wasn't going to make it.
Due to the graces of a wonderful ICU nurse, who literally saved his life twice! during his stay, they tested him for Goodpasture's Syndrome. Goodpasture's is a very rare auto-immune disease where antibodies, for reasons unknown, attack your kidneys and lungs. Wade was a picture-perfect case. He had every sign over the past year, and it had just gone undiagnosed. We were holding out hope that he would regain kidney function on his own, but it's not going to happen. He has been on hemodialysis since May 11 through a chest catheter. He had a short stint at DaVita (which was horrrrrrrible!) and now he gets dialysed through Renal Advantage. He's currently (seriously, as I type this!) getting his fistula surgery, and beginning August 6, will start NxStage training.
Because the Goodpasture's caused his kidney failure, he will have to continue treatement (chemotherapy and plasmatheresis) until he is considered in remission - then we hope to find him a donor kidney. This, as you all know, has been a total nightmare. I'm a bartender, he's a chef; we're both in our 20's; had a great life and apartment and friends and went out every night - and this happens and the world just stops. We have a great group of friends (who don't really understand what we're dealing with, so it's hard) and our parents have been wonderful. His mom actually moved up here from Memphis for the past 2 months to help support him and look out for him.
Now that we know we're in it for the long haul, we're trying to settle back into our new life. No more late nights and bar tabs, more doctors appointments and medicine, but we've got each other, and I think that'll help us. I will try to get him to start his own account here, but he's HORRIBLE at message boards/general interwebbing. Thanks for being here, and for all the help so far - you have no idea how good it is to get straight up information.
Kari
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Well hello Pookari and Wade,
First off, awesome ink Wade! Welcome to ihatedialysis.com,
Unfortunately ESRD is non-discriminatory when it comes to age. Sounds like Wade is getting the proper care now so hopefully you can settle in to a new way of life together. It can be a hard row to ho, but together you can do it. I hope his fistula surgery goes as planned and is successful.
I know you have been lurking for awhile but I'll point out a few things.
For you our caregiver section: http://ihatedialysis.com/forum/index.php?board=33.0
And for both of you our transplant section: http://ihatedialysis.com/forum/index.php?board=27.0
Hope to see you both in the forums, read read read and then post as often as you like.
Sluff/ Admin
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It sucks what has happend to you guys, especially for Wade. I (as well as others here) can directly relate to what you are going through and many of the changes you are making. I am a culinary arts grad who had been in casual to upscale restaurants for 10+ years (which puts me in my very early 30's). Many of the friends throughout those years have been restaurant people and if we worked togeather I bet we'd be friends too. I really would like to see Wade join the site. I am not much for environments like this but the people here have been a tremendous contribution to my health and IHD has become a part of my well being. You sound like a loving compassionate person and you are spot-on when you say that you guys have eachother and that will help you make it through anything. I would love to talk food or pretty much anything with Wade if he would like. I just did a baby christening for 50 pp. Beef Wellington w/ Madeira demi glace, Chx Marsala, wild rice pilaf, roasted fingerling potatoes, summer veggies. Since I can't do the 60 hr weeks I freelance. It can be good money and it is an outlet. I love to cook for people. Anyhow, take good care and let us know how the fistula went. I still have not decide to have the surgery so maybe you could help me there.
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:waving; Hi Kari and Wade,
That's a lot to cope with at such a young age!
Thankfully you finally know what you're dealing with.
I hope things settle down a bit. Your lives have changed but it sounds like you have a good relationship!
Best wishes,
Karol
:welcomesign;
okarol/moderator
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It sucks what has happend to you guys, especially for Wade. I (as well as others here) can directly relate to what you are going through and many of the changes you are making. I am a culinary arts grad who had been in casual to upscale restaurants for 10+ years (which puts me in my very early 30's). Many of the friends throughout those years have been restaurant people and if we worked togeather I bet we'd be friends too. I really would like to see Wade join the site. I am not much for environments like this but the people here have been a tremendous contribution to my health and IHD has become a part of my well being. You sound like a loving compassionate person and you are spot-on when you say that you guys have eachother and that will help you make it through anything. I would love to talk food or pretty much anything with Wade if he would like. I just did a baby christening for 50 pp. Beef Wellington w/ Madeira demi glace, Chx Marsala, wild rice pilaf, roasted fingerling potatoes, summer veggies. Since I can't do the 60 hr weeks I freelance. It can be good money and it is an outlet. I love to cook for people. Anyhow, take good care and let us know how the fistula went. I still have not decide to have the surgery so maybe you could help me there.
Yeah, George!, another foodie! I feel silly trying to explain to people hoo much our life has changed - and, as a restaurant person, i'm sure you know how much of a HUGE change this is! Totally different lifestyle! (Especially that renal diet ... and every kidney cookbook has naaaasty recipies!) Wade went to Johnson and Wales up in Providence and was doing super small fine-dining - however, his passion is for barbecue! We were actually hoping to have our own barbecue/juke joint place in the next year or so - which is obviously on hold! I'm going to show him your post - he was actually talking about trying to do some small freelance catering/dinner drop offs out of our house to just keep in the kitchen! I will also post about his fistula. He wasn't scared, he was just more pissed than anything that it came down to the finality of having to get one. He was really hoping for his kidneys to just come back on their own.
Sluff, Wade's almost totally covered. He's so upset he can't keep getting tattooed! He's got his whole right arm done, his shoulders and chest, calfs, and he's started an entire Japanese backpiece. Actually, his doctor (who is amazing, and so great) was telling him that they were looking at a connection between miniscule amounts of ink in the blood stream setting off Goodpastures Syndrome. The month before he ended up in the hospital, he had about 4 sessions on his back - and actually got right over where his kidneys are shaded. Doh! Needless to say, he won't be finishing his back! I know he's really upset about that! Richmond's a tattoo city, believe it or not, and is known for the abundance of great tattoo artists. Most of our friends are filling up, so it's hard for Wade not to get new ink. They really are addictive!
Karol, i've been reading many of your posts. It's great to have the perspective of someone young in all this, and also the mother's perspective. It's been difficult, to say the least, to have Wade's mom in town, and it's obviously been heartbreaking for her as well.
And, thanks, everyone. I really appreciate it.
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Welcome Pookari and Wade, good to have you aboard.
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Hello and :welcomesign;
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:welcomesign; Kari. It sucks to be so young and have to deal with KF. I'm 27 and will be starting dialysis for the 2nd time soon. I HATE it.
I'm glad you found this site and I hope you find all the answers you need.
Take care
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welcome guys, wade if you think your fistula is sore now wait till they start using it. Mine developed for three months and they just started sticking me. I have been infiltrated already after only 3 runs my upper arm is all black and blue kinda tatooed............welcome Boxman
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Hello and welcome to this site!
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Welcome to the site. There are a lot of younger people on here, as well as the old fogies (of which I am part of now) . Actually I am a middle fogie 45 years old and been at this dialysis thing almost nine years. Keep asking questions of your renal team and of us. The more knowledge you have about your disease the better for your treatment.
kitkatz,moderator
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Welcome, Pookari! I just welcomed Wade, glad he's doing well, so far! It's gonna be a hard road for you, but he is fortunate to have you! I'm glad you're both on, you both can vent, and just chat! :welcomesign;
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Welcome from a native Richmonder...though I haven't lived there in almost 20 years! Way to go, getting yourself informed and involved in Wade's care - he's lucky to have you.
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Welcome to our community! I always have a soft spot for people who join because someone they care about is undergoing this renal challenge. It makes me feel really warm. There is so much here on the site that you can take advantage of, even Off-Topics when you don't want to hear the word 'dialysis'!! Keep reading (you have lots to read!) and keep posting (we need to hear how you are doing). This site has become a real family so we need to know how things are with you guys. Not being nosy, just caring. :grouphug;
Bajanne, Moderator
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Welcome from a native Richmonder...though I haven't lived there in almost 20 years! Way to go, getting yourself informed and involved in Wade's care - he's lucky to have you.
I love Richmond! I moved here 7 years ago to go to VCU from Long Island, and after leaving and spending one year in NYC, I came right back. In fact, i've even got a tattoo for this damn city that I adore so much. It's really changed, even in the past 7 years, so if you ever find yourself back here, it'll probably be waaay different.
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The last time I was there was just after my last transplant in '02, and I barely recognized it then, I can't imagine now...'course it's like that everywhere, I suppose. I agree with you about loving it, though. I feel that way about the entire state of Virginia, you just can't get it out of your system.
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Welcome Poohkari to the IHD Family!
You have been through a lot already.
Hope a transplant becomes available for Wade.
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Hi Kari & Wade - welcome!
Sorry to hear about Wade's issues. My husband Rob is the one doing home dialysis and I'm his caretaker. What a wonderful girlfriend you are to take care of him. I know how hard it can be to see your love one in pain & distress. This is such a great site and the support is just awesome. It sucks to be in your 30's and going through this, I can't imagine being in your 20's!
Looking forward to seeing you "around"!
Larraine :bandance;
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Welcome to IHD!!!!! You are a great gf to Wade.....and most of most great source of support.
WD
Wifedonor
Donated to husband 1/2007
Married 3/2004
"Life is NEVER boring"
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Hi Kari,
I actually pulled this post up by doing a serarch on "goodpastures syndrome", as it was my particular downfall.
First things first, I see you're in Richmond, VA. This is a gorgeous place, this Aussie spent a couple of months at the University of Richmond in the late 80's. I was 18 at the time, and found it funny that, although you Americans had to be 21 to drink alcohol (it's 18 here in Australia), absolutely everything was celebrated by the cracking of a can of (poor quality, weak as p-ss) beer (I think it was called "milwauke's best" or something similar.)
Onto the Goodpastures - it sounds like Wade was classic demographic for this insidious, evil disease. Pretty much the only difference between he and I seems to be the ink. (I don't have any). I was a hard working (same sort of hours as Wade), heavy smoker, (reasonably) heavy drinker, loved to go out with friends, and aged 25, recently married.
I'm here to tell you that there is a future, and it can be fulfilling and rewarding. I've managed to fluke two wonderful boys (one through IVF, the other was a complete "SURPRISE!" type thing) with my beautiful, supportive wife.
I know your friends don't understand what's going on with you guys at the moment. They never will. Get used to the idea, then get over it. This might sound harsh, but I don't have one friend left of the "mates" I hung out with before getting sick. I still get angry about it, but then I'm reminded that it's probably my fault. I made everything about my illness, and they got sick of it. So if there's one single piece of advice that I could give to someone who's in pretty much the exact same situation I was, it would be this: Your friends won't understand. They'll try for a little while, then they'll see that Wade "doesn't look sick", so start acting like everything's normal again. Roll with this - make sure your friendships stay about the same things they were before Wade got sick.
The most important thing though is that it sounds like he has a loving partner. (Just remember to go and do some nice things for yourself too - things that normal people do, just because Wade has kidney failure doens't mean that you have to completely go without the nicer things in life all the time as well. - Get out and hit the bars once in a while, I'm sure Wade will understand)
I won't welcome you here, as you actually joinded here before me, but I will say it's really nice to have met someone who is exactly where my wife and I were at around 12 years ago.
Best wishes to both of you,
Stu :ausflag;
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Hi Kari and Wade,
you've got each other and that is the main thing while you get to some level of normality.
There is a great support network here so Wade, don't leave it all for Kari. Some people prefer not to know what is coming etc but if you go into things prepared then it makes the ride easier - for both of you.
Here endeth the lecture!
Matty.