So mad and CONFUSED!

[julian230]

Yesterday my doctor came in and visited me (No idea why, since he rarely comes in anyways... perhaps with the stock market crashing yesterday he felt he probably should start working again) and he informed me that my IVIG therapy might not come into action because of the stock market falling , and if I did get the therapy that it would have a 60 % chance of actually working, and that if it didn't , than he didn't know about everything else. I'm so depressed about being on dialysis , you know, its like I'm going to be stuck there, and to top it off he said even if i got IVIG , my sister probably won't be a match because I had previously gotten a kidney from my mom and the anti gens would just not match still. Argh! All of this , I just need to let it out! 

[SuzanneFord]

Sounds like he was in a bad mood and took it out on you to me, but I could be wrong.  I don't understand why your treatment would be affected by the stock market.  And why purposely deflate your hopes rather than at least being neutral about the possible results.  60% chance of working is pretty good, it's as if he wants you to see your glass as half empty instead of half full when nobody actually knows what will happen until you try it.  Just my opinion.

[monrein]

Is a second opinion an option? 

[Lucinda]

Most doctors are pessimistic.  It is what they do best.  I am sure if he hadn't just taken a hit on the stock market himself then he would have been at 80 percent.  He is just trying to make you suffer for his loss.  Sounds like a really nice bloke.  Isn't there someone else you can go and see.? 

[julian230]

You guys are cheering me up!  Yeah, I could just go straight to Cedar Sinai hospital .  Or rather get a second opinion , definitely. Especially if his mood was wavered so much by the stock market and he can't keep business separate from "pleasure". I'm just so confused on the IVIG treatment in general! I hate dialysis, i hate the fluid control , the diet , and to think I'll be on it for years and years . ON top of that its a shortage of kidneys! I'm usually not this down , but I just need to let it out again. Thanks

[willieandwinnie]

julian, I would tell head nurse at clinic that you want to speak to him. Let it all out to him. What does the stock exchance have to do with IVIG therapy. Because he had a pissy day and he's money is tied up in the stock exchange, gives him no right to use you a a beating post. He is full of crap about the antigens. We know someone that got a kidney from his father, brother and then son and he is doing just fine. This doctor is just being a prick. Want me to come kick his a--.  

check out this link from one of our new members. He has had 4 transplants. Don't give up hope.

http://ihatedialysis.com/forum/index.php?topic=10260.from1222811648;topicseen#msg174622

[okarol]

Yeah, I could just go straight to Cedar Sinai hospital.

That's what I would do. Explore your options.
That Dr. Doom is a real bummer. Lemme at him! 

[TynyWonder]

OK, I have to ask and risk sounding stupid but what does IVIG stand for?  Also, what is IVIG therapy?    Thanks a bunch!

[okarol]

Here's some info about it http://ihatedialysis.com/forum/index.php?topic=9234.0

[TynyWonder]

  Thank you Karol!   

[twirl]

W&W wrote prick but she would not write ass
but julian I am so sorry you are dealing with this at such an early age
I do not know how I would have handled it but it would not have been easy
I do not do the fluid restrictions or the diet very well
sometimes it is too hard
Texas is hot, as you know
I'm in Conroe near the Woodlands
hey -- fellow Texan
good luck

[thegrammalady]

twirl, the more you sweat the more you can drink.   

[julian230]

I do not do the fluid restrictions or the diet very well

Me either. As one girl puts it at my unit "What will it do , kill me?"   I try to follow the diet and restrictions but you can only do it so long , the things we aren't allowed to eat is a HUGE list! Everything has potassium , phosphorous and sodium and its just so dang hard to control your diet!  Texas is hot ! I guess its good because you get to sweat out some liquids if you go outside for more than 10 seconds.

[twirl]

but then you get the fluid back b/c of the damn humidity 

[julian230]

julian, I would tell head nurse at clinic that you want to speak to him. Let it all out to him. What does the stock exchance have to do with IVIG therapy. Because he had a pissy day and he's money is tied up in the stock exchange, gives him no right to use you a a beating post. He is full of crap about the antigens. We know someone that got a kidney from his father, brother and then son and he is doing just fine. This doctor is just being a prick. Want me to come kick his a--. 

check out this link from one of our new members. He has had 4 transplants. Don't give up hope.

http://ihatedialysis.com/forum/index.php?topic=10260.from1222811648;topicseen#msg174622

THANK YOU for the encouragement! Its just so hard to hear , the IVIG might work all the way to "I don't think it will work for your sister and you". From father to brother and than son? Thats amazing! I was  under the impression that once you receive from a close family member ,ie. my mother, that it was not possible to receive from other siblings. The whole kidney thing confuses me 

[monrein]

You could also start printing out any info about IVIG so that you'll have a better understanding and clearer questions for the neph.  If the docs tell you any stuff that seems fuzzy, ask them to print out an article that talks about whatever his/her point is. 

[Lucinda]

Bloody doctors.  I am so lucky to have a great one.  We're waiting Kit......where are you with that big stick??  I am sure Kit won't mind if we hand it over to you Julian.  Take it and use it....teach him about a new kind of crash...his skull!!!!!!!   

[kitkatz]

Of course you must be judicious n your use of the stick with the medical professionals you deal with every day.

When they say something you do not understand 

When they DO something you do not like 
 
When they piss you off 

When they say something stupid 

When they walk in the room 

And an occasional   

[paris]

Julian, I understand exactly what you are feeling.  I have to research and explore every opportunity, because every doctor or center has their way of doing things.  There is a "west coast"  "east coast" protical.  West coast is quicker to do plasmapherisis and IVIG therapy.  East coast is slow in starting those programs.  I had to make call after call to find a center in my area that did plasmapherisis with donor transplants.  My neph is great, but he had no idea who did it.  It isn't his specialty.  It is very frustrating. You would think someone would have all this information in one spot.  Back to IVIG--- I have been told similar statistics.  But, it seems like it is worth a try.  I suggest contacting transplant centers directly. They all have websites.  I called Johns Hopkins and within days they were scheduling the initial blood work for donors.  Sometimes you just have to do all the work.  One center I am listed at, recently started IVIG therapy.  But, they didn't call me -- I found out by chance.  Otherwise I still wouldn't know. So, be a squeaky wheel and make some noise.  Go to websites and see what transplant centers are doing in your area.   I am sorry your neph was so blunt.  Sometimes I think they have no idea how powerful their words are.  It is our life they are talking about.  Stay strong!!

[jbeany]

If I had a 60% chance of buying a winning lotto ticket, I'd buy tickets every day.  Break out that stick!

[devon]

Time to invest time in finding another doc!

As my doc reminds me...

Q: What do you call a person who graduated LAST in their medical school class?

A: Unfortunately... Doctor!

I am sorry you have to suffer this doctor along with everything else.  You may not be able to do much about your medical issues but there are lots of nephrologists out there!  Find a GOOD one!

-Devon