Appointment With the Transplant Clinic

[Krisna]

They called today.  I have an appointment with them on March 6th for the evaluation.  Now I need to schedule my dental appointments to finish having my teeth removed!  Something I already know I'll need to get done before I can have a transplant.  Even though I've had 4 transplants already they want me to go through their class but they said I may not need to do the whole 5 hrs.  One of the transplant surgeons is the one who saved my life after my small intestine ruptured!  I'm glad she's still there.   

[jeannea]

The class may be boring but it's a small hoop to jump through. Glad you'll be back on the list!

[Krisna]

The class may be boring but it's a small hoop to jump through. Glad you'll be back on the list!

Yeah, but she did say I may not have to all of it since I've had 4 transplants already.  But it is good to do it in case something has changed since my last one!

[wj13us]

Maybe they want you in the class so you can teach it!

Actually your experiences and insight may be beneficial to those in the class.

Good luck,

Bill

[jshabanian]

The class was boring the second time around for me...poor you having to sit through it 4 times already!!!  But it is a small price to pay.  I am amazed at how little most of the other attendees know about the process.  They don't even read the literature they are given.  I know that because they wouldn't ask the questions they ask if they had actually read the paperwork.

Bill is right that you will be able to give good insight to the class with your experiences.

Good luck!!!!!

janet

[MooseMom]

Gee...no one ever offered ME a class!

[cariad]

Gee...no one ever offered ME a class!

I wasn't offered one either - I was told this is where and when it is, we'll see you there.

I was amazed at the emotion displayed. Men fighting back tears, it was uncomfortable and I resented being trapped there. I too hate the stupid questions. I normally love meeting new people and chit chatting, but DO NOT approach me at an eval. I do not want to meet you, I don't want to tell my life story, I don't want to hear your message of inspiration as you tell me that transplants can last a long time and I shouldn't worry (did I say I was worried?). I just want to get out of there as soon as humanly possible.

Krisna, you are a much better sport than I am. 5 hours is the longest I've EVER heard for one of these.

[cassandra]

classes for transplants???  Wow, what for? Glad I live here

[MooseMom]

Cariad, Northwestern makes you go to transplant class?  I'm glad Rush doesn't require that.  They've never talked to me about such a thing.

[jshabanian]

My class was all day.  But that included meeting with the doctors, the dietician, the social worker, and an instructional class.

[cariad]

Cariad, Northwestern makes you go to transplant class?  I'm glad Rush doesn't require that.  They've never talked to me about such a thing.

Some places do and some don't. Of the five evals I had, only 2 (UCSF and Northwestern) required it and I went because I was, you know, trying to suck up.

I told UCLA that they were out of their minds if they thought I was going to go to their FOUR HOUR lecture just for the privilege of being allowed to schedule an eval appointment. Two trips to Los Angeles? No. The two classes I did attend were on the same day as my eval, so a long day, but still just a day.

[KarenInWA]

My center sends out a dvd, so you can watch the "class" in your own home. They recommend having someone with you to help take notes. It is long and boring, but much better than having to drive down there, pay for parking, and sit in a class with others. They send the dvd out before the eval appt.

KarenInWA

[Cordelia]

Class? What class? I guess things are different up here in Canada. I sat in a information session for an hour, but that was it. I never took no 5 hour classes.     

Sounds interesting. Had it been offered here, I'd do it.        Hope it goes well!

[Krisna]

Maybe they want you in the class so you can teach it!

Actually your experiences and insight may be beneficial to those in the class.

Good luck,

Bill

That's funny!  I've sure been doing this long enough!  Over 32 yrs!

[Krisna]

Class? What class? I guess things are different up here in Canada. I sat in a information session for an hour, but that was it. I never took no 5 hour classes.     

Sounds interesting. Had it been offered here, I'd do it.        Hope it goes well!

I don't know exactly.  They didn't have it for my other 4 transplants.  All I know is that it's an educational thing. 

[Krisna]

My center sends out a dvd, so you can watch the "class" in your own home. They recommend having someone with you to help take notes. It is long and boring, but much better than having to drive down there, pay for parking, and sit in a class with others. They send the dvd out before the eval appt.

KarenInWA

The one I go to is in Seattle but unless they've changed it since I was there abt 6 months ago, they validate.  But yeah, I'm sure it will be just as boring as what the kidney center made me do after my second transplant failed!  Boring videos!  And there were so many of them! 

[Krisna]

My class was all day.  But that included meeting with the doctors, the dietician, the social worker, and an instructional class.

Yeah, the coordinator said that I may not need to meet with the doctors because I already know the transplant surgeon who will be there that day.  She's the one who saved my life after my small intestine ruptured in Dec. 2002!  My Nephrologist had the ER call her because she knew what was in my abdomen and I originally thought something was wrong with my last kidney.  It had swelled up real bad after failing.  And she was also the surgeon who did my third transplant.  That one had to be removed 9 wks later due to serious infection!

[Krisna]

Gee...no one ever offered ME a class!

I wasn't offered one either - I was told this is where and when it is, we'll see you there.

I was amazed at the emotion displayed. Men fighting back tears, it was uncomfortable and I resented being trapped there. I too hate the stupid questions. I normally love meeting new people and chit chatting, but DO NOT approach me at an eval. I do not want to meet you, I don't want to tell my life story, I don't want to hear your message of inspiration as you tell me that transplants can last a long time and I shouldn't worry (did I say I was worried?). I just want to get out of there as soon as humanly possible.

Krisna, you are a much better sport than I am. 5 hours is the longest I've EVER heard for one of these.

I've been doing this a long time!  My kidneys failed in 1979!  The 5 hrs includes meeting with everyone which I might not have to do.  We'll see.  I'm tired of dialysis and my doctor says I'm healthy enough so I'll do what I need to get on the list!

[Krisna]

The class was boring the second time around for me...poor you having to sit through it 4 times already!!!  But it is a small price to pay.  I am amazed at how little most of the other attendees know about the process.  They don't even read the literature they are given.  I know that because they wouldn't ask the questions they ask if they had actually read the paperwork.

Bill is right that you will be able to give good insight to the class with your experiences.

Good luck!!!!!

janet

Thanks!  I didn't have to go through it before.  This is new to me! 

[Restorer]

Both at UCLA and CPMC, I only had a 1.5-2 hour presentation, Q&A session, then waiting around, then interviews with the doctor and social worker, and lab draws. That was it. Altogether it was 4 or 5 hours at UCLA (with lunch), and 2 hours with CPMC's local outreach clinic (a smaller group).

[Chris]

Cariad, Northwestern makes you go to transplant class?  I'm glad Rush doesn't require that.  They've never talked to me about such a thing.

Yep, I only went to one tho since kidney and pancreas are two seperate classes, but I had a hypoglycemic attack in the cafeteria while waiting for the class for the kidney part and didn't need to make it up. It probably was a repeat of the pancreas because they went over med protocol, survival rates of organs they transplant, and more. I forgot how long it was, but there was lunch involved and the class room was packed.
 
I would just say give me the PowerPoint notes and if I have a question, wake me up....lol
 
Moosemom, at the time I was looking into transplants Rush gae a seminar that was very informative, but a little outdated on success rates compared to Loyola and Northwestern at the time. Rush came out to my dialysis center. Did I post about the NKF Transplant seminar in one of your post? There you can ask and get information without a hassle from the center by either talking to a coordinator or  one of the doctors.

[cariad]

Both at UCLA and CPMC, I only had a 1.5-2 hour presentation, Q&A session, then waiting around, then interviews with the doctor and social worker, and lab draws. That was it. Altogether it was 4 or 5 hours at UCLA (with lunch), and 2 hours with CPMC's local outreach clinic (a smaller group).

Really? When did you go to your UCLA eval? I contacted them in 2006, did not get a response from anyone for months, badgered them some more, then received some form letter saying that I needed to report at this location at 8AM, it would be over by noon, and after that I could try hunting them down for an eval appointment. Perhaps they've dropped that bizarre policy? That was really the last straw for me with a hospital that seemed disinterested at best.

I've been doing this a long time!  My kidneys failed in 1979!  The 5 hrs includes meeting with everyone which I might not have to do.  We'll see.  I'm tired of dialysis and my doctor says I'm healthy enough so I'll do what I need to get on the list!

Oh, see, I would call the meetings with the transplant staff the eval, and the class part the information session. I hope you get on (and off) the list in a flash, Krisna.

Both UCSD (where I never actually went for my eval) and Cedars were willing to waive the information session requirement for me. My husband actually told Northwestern that I could teach the class and that I was hoping to get out of this part of the eval, the response was that there are probably a lot of patients that feel they could teach it, but the lecture was more about Northwestern's specific protocol so it would not be something I would already know. This turned out to be a giant lie, but what are you going to do? I think they wanted everyone there so they could recruit for clinical trials. Both UCSF and Northwestern mentioned clinical trials at this session, one even passed out fliers for their trial on using carbon monoxide during surgery to speed recovery. Something like that. It all turned out fine in the end, and I got to see more of their doctors and check out their individual styles, so it was useful for that.

Chris, the kidney info session was over 2 hours in my recollection. I don't think they even touched on meds because I would have had to shoot myself. Then again, we are talking about different decades, so perhaps yours would have been much shorter.

[MooseMom]

Yes, Chris, you did give me that info.  I'm glad you reminded me because I had forgotten.

What kinds of things do they talk about at these classes?  I guess I never really thought about attending a class because if I have a specific question, I go online for information or I just email my coordinator.  I guess I'm just kinda taken aback because neither Rush nor UW has mentioned classes, and I'm wondering if that's a good thing or a bad thing.

[Restorer]

Really? When did you go to your UCLA eval? I contacted them in 2006, did not get a response from anyone for months, badgered them some more, then received some form letter saying that I needed to report at this location at 8AM, it would be over by noon, and after that I could try hunting them down for an eval appointment. Perhaps they've dropped that bizarre policy? That was really the last straw for me with a hospital that seemed disinterested at best.

I had several attempts at referral to UCLA from 2007 on, was told they'd call me, they never did. I finally called to make my own appointment in February 2010, got an eval appointment for May. The letter said basically,

We are pleased to consider you for transplantation. You will be meeting with the transplant nephrologist, surgen, coordinator, and social worker, so plan on being at UCLA the whole day.
Appointment: Tuesday, May 18, 2010 at 10:00 am - 5:00 pm
Location: 200 Medical Plaza Building, Room 206

along with some information sheets and forms to fill out. If you tried with them in 2006, that was before the Ronald Reagan Medical Center was open. I had surgery at UCLA in 2007, in the old medical center, and it kind of sucked. The new medical center is much bigger and looks a little better. I bet they changed their procedures when they switched buildings - but obviously not how much they care about prospective patients.

I really don't deal with UCLA anymore after they took a month to send their blood typing result to CPMC. They send test packets to my dialysis center, and that's about all the contact I have with them right now.