Keep your fingers crossed please...

[rsudock]

Hello Friends,

 I just talked to the doc and he says that they are in the initial stages of testing 2 more people who have come forward to be living donors. He said the first girl that asked to be a living donor in September, just didn't work out because I had such high antibodies against her, but overall my antibodies are not high. I just hope and pray these other 2 people one of them works out!

I felt so proud because of my knowledge from IHD, I told the doctor about the IV treatment to reduce antibodies and questioned why this hospital won't take a risk with zero match donors. Thank you to all of you for the information, I was armed and prepared. The doc is being a great advocate for me!

Anyone else with similar experiences or advice?

Alright well I off to do some shopping before the big storm hits!

xo,
R

[boswife]

Fingers crossed and prayers said ;-). And well wishes sent ;-)

[Riki]

I need to get some printer ink... I want to print out some info on that IV treatment for antibodies and FSGS to give to my doctor.. to let him know I'm serious about wanting to be transplanted, and that I'm not being passive about my treatment.  Most of the other patients around me just kind of let the doctors and nurses take care of everything.  I've been doing that nearly 7 years now, and it hasn't gotten me any further, so it's time for a change.

Karol, you wouldn't happen to have any printer friendly links on those 2 topics, would you?

[Jean]

Fingers and toes crossed too!!!! Best of luck to you.

[rsudock]

Cheers to us RIKI on being informed patients! You go Girl!

xo,
R

[MooseMom]

YES!!  Well done to you both for not being passive!  It takes a lot of courage and energy to be good advocates for yourself.  It would be easier if we could just sit back and let others take good care of us, but we all know that's not what happens.  So, good for you!

[tyefly]

it is exciting...... 

[carol1987]

Rsudock.... good luck and keep reading!!  Hope one of these work out!!

If these don't work out check into the National Kidney Registry /Paired exchange program. Does your transplant center participate?
I have been on the UNOSTransplant wait list for almost 2 years and have high antibodies...  with a willing living donor (My DH) who could not give to me.. I was able to get into the NKR exchange and we had two calls within a week of being place on the NKR for paired exchanges.

The first one did not go thru because a donor backed out... but the second one is still a go and we are 99% on for transplant on 1/6
Explore all options!!!!

[rsudock]

tissue typing this tuesday after christmas!   


xo,
R

[Riki]

I, uh.. still need some printer friendly links.. *L*  My neph is a bit of a dunce.  If I don't have the info to hand over, he'll probably forget I even asked about it.

[natnnnat]

Not sure if I understand what you mean by printer friendly links, but if you mean links which are easily retyped from a printed version, maybe that could be done by making a tinyurl.   http://tinyurl.com/

But maybe you should just print out the thread rather than trying to present him with printed links. 
That way you can be waving paper with the whole text on it rather than saying "really, you really should go to this link, really truly"
and your Neph will say, "yeah, sure" and then forget about it.
Knowing medicos, you better have a three sentence summary as well, one which get's the gist down before he/she interrupts!

[Riki]

yeah, I was looking for links to sites with the info that were easy on the printer, not too many colors, preferably no pictures.  I wanted to print the information out, then just hand it to him

[natnnnat]

Ah I get it.  Copy and paste the text into a word document?  remove the pictures, make everything b&w and print?
or if the site is large (I don't know which site you mean) and this is too much trouble, send to a black and white printer or with the b&w option chosen?
You've probably thought of all these options already, just covering the obvious bases here.

[Riki]

right now, I just really need the information to hand to him.  I've got an appointment next Thursday to talk to him about things that need to be done before I can be transplanted, like how to address my high antibodies, and the removal of my 2 transplanted kidneys

I need info on FSGS and Plasmapheresis.  I have a feeling that if I mention either to him, he'll look at me like I've got 3 heads

[RichardMEL]

I need info on FSGS and Plasmapheresis.  I have a feeling that if I mention either to him, he'll look at me like I've got 3 heads

Is he a nephrologist or a vet?

Why would he do that? They should all understand the procedure and what it entails. Heck half my dialysis nurses were on top of it (mostly because they actually had to do it!).

[Riki]

I need info on FSGS and Plasmapheresis.  I have a feeling that if I mention either to him, he'll look at me like I've got 3 heads

Is he a nephrologist or a vet?

Why would he do that? They should all understand the procedure and what it entails. Heck half my dialysis nurses were on top of it (mostly because they actually had to do it!).

your nurses know about this stuff?  Mine don't.  I didn't know about Plasmapheresis until I started coming here on a regular basis.  When I mentioned to one of the nurses (actually, she's the team leader) that a friend had offered me one of her kidneys, she felt the need to bring up the fact that I have high antibodies.  Her actual words were, "and I don't think there's much you can do about that."  When I mentioned Plasmapheresis to her, she said something about it being experimental and done at the Mayo Clinic.  From what I can tell, that's not true.  So, either she really doesn't know or she's trying to deter me from going for a transplant

[cariad]

Riki, while it is done at Mayo, her underlying message, that this is somehow secluded to Mayo and still trapped in early phases, is TOTALLY untrue. Of the 5 hospitals I visited regarding transplant, 3 of them, Cedars, UCSF, and UW-Madison were advertising this procedure back when I was getting listed, which was 2004-2007. I have known about desensitization for over 4 years, and it's not like I was looking for it. Cedars aggressively peddles it to patients.

I don't know about Canada, but I am sure there are centres out there that will be willing to give it the college try with you. I would call her on it, as in say directly to her: do you not know what you're talking about or do you not think I should get a transplant?

Medical misinformation is dangerous and makes me angry. Don't let her stop you.

[RichardMEL]

Totally agree with my dear Cariad here. That's dangerous of the "team leader" to MISlead you like that.

Royal Melbourne Hospital (Where both Tamara & Sally had their ABO transplants) have been doing this procedure for years. One of my ex-nurses also worked there and did all that stuff on a routine basis. She even said she'd make sure she'd ensure she was there to do mine if I did end up getting an ABO kidney from my brother (which of course has not happened ). I also believe there are other hospitals in my city alone that do it (The Austin).

Canada would HAVE to have major city hospitals that do this. It's not the third world!

[Riki]

I have no intention of letting her or anyone else stop me.  I would really like to have a hard copy of the information in my hand, in order to pass it to the doctor when I see him next week.  That way, he can't just dismiss me.  The last time I saw him in his office, which is actually over a year ago (he stopped the office visits with the in-centre dialysis patients, which bugs me too) I asked him about the Paired Donor Exchange Program, and he knew nothing of it.

It appears that because of this site, and the fact that I watch the news every night, I know more about these things than those who are paid to know about it.  It's rather scary when you think about it.

Richard, I'm sure there are hospitals in Canada that do the procedure.  If the hospital in Halifax, where my other transplants were done, doesn't do it, I'm willing to travel to Montreal or Toronto for the treatment

[rsudock]

called the donor coordinator.....no news still waiting....

[okarol]

From wikipedia:
Compatibility

If plasmapheresis or IVIG is not performed, the donor and recipient have to be ABO blood group compatible. Also, they should ideally share as many HLA and "minor antigens" as possible. This decreases the risk of transplant rejection and the need for another transplant. The risk of rejection may be further reduced if the recipient is not already sensitized to potential donor HLA antigens, and if immunosuppressant levels are kept in an appropriate range. In the United States, up to 17% of all deceased donor kidney transplants have no HLA mismatch. However, HLA matching is a relatively minor predictor of transplant outcomes. In fact, living non-related donors are now almost as common as living (genetically)-related donors.

In the 1980s, experimental protocols were developed for ABO-incompatible transplants using increased immunosuppression and plasmapheresis. Through the 1990s these techniques were improved and an important study of long-term outcomes in Japan was published ([1]). Now, a number of programs around the world are routinely performing ABO-incompatible transplants.[19]

http://en.wikipedia.org/wiki/Kidney_transplantation

[okarol]

I need to get some printer ink... I want to print out some info on that IV treatment for antibodies and FSGS to give to my doctor.. to let him know I'm serious about wanting to be transplanted, and that I'm not being passive about my treatment.  Most of the other patients around me just kind of let the doctors and nurses take care of everything.  I've been doing that nearly 7 years now, and it hasn't gotten me any further, so it's time for a change.

Karol, you wouldn't happen to have any printer friendly links on those 2 topics, would you?

Not sure exactly what you want but I started a new thread: http://ihatedialysis.com/forum/index.php?topic=21514.0

[Riki]

Thank you, Karol... That's exactly what I was looking for

[rsudock]

got the call today....not a match.      PRAs are high...I insisted about plasmapheresis....the doc told me, "I need you to stay level headed why I look into this."   

[Brightsky69]

It will happen rsudock