The Mad Chatters thread Part 9

[mom2taylorandemily]

Well, I tell you what............I don't think mom better call about that party for a few days, because I'm just about to tell those people where they can stick their sodas.

I'm pissed that the dr. told us the way he did. He just came in and started asking symptom questions, so we knew, and then he just said, "Well, you have significantly more cirrhosis, so we're not seeming to be able to slow that down very well. We also have a new disease............"and he never looked up from his notes. The whole time looking at his notes. Then he throws all the statistics crap at us and then he says to dh "Do you understand what I'm telling you?" Uh, yeah, we get it..........it's bad. He's like, "I don't want to scare you but this is a significant disease"...............

WOW! His bedside manner sucks!!!!! I am stunned at his apparent non sympathetic approach to medicine. Can you find a new Dr.? Also, can he be a candidate for transplant? Girl, I seriously think I would try to find a new Dr. That was horrible.

 

[paigevz]

And he calls his mom tonight.........dh did, and he didn't tell her. They just don't talk in his family. When we were trying to get him diagnosed, and couldn't figure out what was wrong with him, and then finally did............we found out she has the same rare disease..........and was diagnosed 3 years before! She'd never told anyone. She went into remission right away and has stayed in, thank goodness.

 

[hiwaygal]

Well, I tell you what............I don't think mom better call about that party for a few days, because I'm just about to tell those people where they can stick their sodas.

I'm pissed that the dr. told us the way he did. He just came in and started asking symptom questions, so we knew, and then he just said, "Well, you have significantly more cirrhosis, so we're not seeming to be able to slow that down very well. We also have a new disease............"and he never looked up from his notes. The whole time looking at his notes. Then he throws all the statistics crap at us and then he says to dh "Do you understand what I'm telling you?" Uh, yeah, we get it..........it's bad. He's like, "I don't want to scare you but this is a significant disease"...............

UGH! Doctors with really bad bedside manner!

To be honest, Paige, you might try writing him a letter and letting him know how you feel about how he handled this. Be as mean and nasty and spiteful as you can...get it all out. Then go back and edit it a day or so later...until you've gotten to a point where you can actually send it to him. Whether or not you do isn't the point, but the letter might help you get out some of the frustration. Personally, I think you should send the letter. He should know that a little warmth and caring goes a long way.

 

[mom2taylorandemily]

UGH! Doctors with really bad bedside manner!

To be honest, Paige, you might try writing him a letter and letting him know how you feel about how he handled this. Be as mean and nasty and spiteful as you can...get it all out. Then go back and edit it a day or so later...until you've gotten to a point where you can actually send it to him. Whether or not you do isn't the point, but the letter might help you get out some of the frustration. Personally, I think you should send the letter. He should know that a little warmth and caring goes a long way.

ITA!!!

 

[paigevz]

WOW! His bedside manner sucks!!!!! I am stunned at his apparent non sympathetic approach to medicine. Can you find a new Dr.? Also, can he be a candidate for transplant? Girl, I seriously think I would try to find a new Dr. That was horrible.

After that, he did turn around and explain it better and print us off some stuff on the internet and all. I think he just didn't want to see our faces.

He's the 3rd leading liver specialist in the country. And he's going to a symposium on NASH in two weeks and hopes to find out more. He said some drugs are in testing phases, but not being used yet.

Transplants are tricky, Mary. The organ has to have failed for one, and then you have to be approved and then you have to have a match. Most hispanics don't donate organs. It would work, if all the problems could be overcome. That will be where we get to eventually, I guess.

 

[paigevz]

Either Jay got kicked off or she's writing her story..............

 

[Toot Sweet]

She's probably typing up that TR. Wow, people really put a lot of effort into those, huh? That's really nice, it helps others people plan their trips. Before I had ever gone to WDW, I used to read the TRs a lot.

 

[paigevz]

I'm also really mad that I had no one to call when my internet wouldn't work. I mean, I have you guys' numbers, but not knowing what you're doing, and it was late..............I didn't know if I could call any of you.

I'm kind of mad at myself for living so sheltered that I had no one to call.

 

[mom2taylorandemily]

She's probably typing up that TR. Wow, people really put a lot of effort into those, huh? That's really nice, it helps others people plan their trips. Before I had ever gone to WDW, I used to read the TRs a lot.

I'm not sure I'll do that, when I come back. It will take me too much time just to get the girls scrapbooks done.

 

[jaycns]

Me too, I wasn't going to ask, glad you did!

I have thrombocytopenia...well a type of it called ITP. It's an autoimmune disease. It's not bad except when my platelet counts plunge. Then it gets scary. It usually only flares when I am preggers. This past Feb/March and April was my last flare up. I also have Rh neg. blood which in and of itself is nothing more then a notation on a medical chart so I don't get a transfusion of positive blood...the only problem it creates is some of the "easier" treatments for ITP are not available to those with rh blood.

I had a pretty scary flare a few years ago and it was then I learned that I cannot control my health. Also, a dear friend I met on an ITP chat page passed away due to complications arising from ITP. It was a pretty rotten time and the doctors were pretty worried and they started talking about "stop gap" measures to "buy time" to do treatments. But I am actually thankful for that time now...it showed me how precious everything in my life is...especially the people. My family and friends mean everything to me.

Now, I can do almost everything anyone else can. I just have to go in for monthly blood draws and carry a card that instructs them to immediately check my platelet level if I am ever injured. It's not a good thing to have and certainly does sometimes take lives...but so many other auto immune diseases are worse to have so I feel blessed to have this one...if that makes any sense at all!

 

[Toot Sweet]

Well, you can call me, Paige. Day or night!

 

[mom2taylorandemily]

I'm also really mad that I had no one to call when my internet wouldn't work. I mean, I have you guys' numbers, but not knowing what you're doing, and it was late..............I didn't know if I could call any of you.

I'm kind of mad at myself for living so sheltered that I had no one to call.

Well you could have called me. I'm almost always home. Especially now, since DH is working 12 hr. days, 6 days a week. The OT $ isn't bad, but the kids miss dad a bunch.

 

[paigevz]

Jay is a strong chickie..............

 

[Toot Sweet]

Jay..... I'm glad it is not bad, at least right now. You have a really great attitude about it!

 

[Toot Sweet]

I'm still super-sleepy, friends. I think I'm going back to sleep.

Paige, take care of yourself, lady!

 

[hiwaygal]

Wow Jay! You have been through alot!

I'm glad things are better for you now!

 

[hiwaygal]

'night Bonnie

I'm tired too...and DH is snoring in the chair

But I'll stay as long as anyone needs me to!

 

[paigevz]

Goodnight Bon..............

 

[jaycns]

Well, you can call me, Paige. Day or night!

Me too!

 

[hiwaygal]

I guess I should send Paige my phone number...just so I won't feel left out!!