I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: rsudock on December 12, 2010, 09:29:02 AM
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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
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Fingers crossed and prayers said ;-). And well wishes sent ;-)
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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?
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Fingers and toes crossed too!!!! Best of luck to you.
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Cheers to us RIKI on being informed patients! You go Girl!
xo,
R
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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!
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it is exciting......
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Rsudock.... good luck and keep reading!! :2thumbsup; 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!!!!
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tissue typing this tuesday after christmas! :pray;
xo,
R
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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.
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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!
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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
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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.
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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
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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!).
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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
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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.
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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!
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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
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called the donor coordinator.....no news still waiting....
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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
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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
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Thank you, Karol... That's exactly what I was looking for
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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." :'(
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It will happen rsudock :pray;
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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." :'(
I am sorry, but hope you get a match soon.
Jeez that's an odd comment by the doc. It's hard to be calm, he should know that.
:cuddle; :cuddle; :cuddle;
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My appointment is tomorrow. I'm a little afraid of going to see him. I have an odd feeling that they are trying to deter me from transplant, because they believe the misguided notions of one doctor who believes I sabotaged my last 2 kidneys and gave myself peritonitis with the aim of getting attention or sympathy.
Because of her, when I'm admitted to the hospital in Halifax, I'm watched, and when given medication, I have to take it then and there while they are watching me. It wasn't until I got the fungal infection that nearly killed me that I was treated like a person instead of a criminal. I was told that the reason was that there was no way I could have given myself that infection.
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RIKI how did your appt go with the neph about transplant? I've been thinking about you...
Well the kind woman who got tested and wasn't a match is now telling me her husband wants to be tested. (2 years ago his life was in jeopardy b/c of a nonmalignant brain tumor, so he wants to give back) i keep dragging my feet to go and setup a time to get our blood drawn....i am to afraid to hear the words "not a match" again. i know dialysis is not a death sentence but to live with no hope...am I up for it?
xo,
R
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Rsudok
would one of the donors be willing to donate on your behalf so you can get into a transplant chain?
Carol
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RIKI how did your appt go with the neph about transplant? I've been thinking about you...
He seemed very open to anything I had to say and was really positive about Mom being assessed for the Paired Donor Exchange Program. She has an appointment on February 10. I haven't heard anything from the friend who offered me her kidney before Christmas, so I'm thinking she's probably having second thoughts
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well guess what folks my 3rd living donor that was tested was a MATCH!!!!! :bow; :clap; I have no idea what the rest of the process is now that we established a match but I put a call in to the transplant institute....maybe just maybe I will get off of this machine, but if I don't I am going to make the best of being on dialysis. Thanks to everyone out there for their support!
xo,
R
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well guess what folks my 3rd living donor that was tested was a MATCH!!!!! :bow; :clap; I have no idea what the rest of the process is now that we established a match but I put a call in to the transplant institute....maybe just maybe I will get off of this machine, but if I don't I am going to make the best of being on dialysis. Thanks to everyone out there for their support!
xo,
R
:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
Yay.. hope everything keeps moving forward and you get that transplant!!
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thank you for caring enough to post carol! :)
xo,
R
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My living donor (Jeff) and his wife contacted me via facebook to tell me how the process is going. march 16th and 21st are the rest of the testing he needs done to be a donor. April 1 (April Fool's Day...is that a good omen?) our case goes to transplant committee to get confirmed that we are good candidates for surgery. The possible surgery dates could be as soon as late April or early May!!!! I am thisclose to getting a new lease on life...let's hope everything works out!!
xo,
R
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Fingers, toes and eyes crossed for you. Let us know how it goes.
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I'll be keeping an eye out here for more news. All the best.
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:2thumbsup; Great - I hope all progresses smoothly!
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Hopin' and a prayin'.
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I hope you get the GO ahead, fingers x'd for you .
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My living donor (Jeff) and his wife contacted me via facebook to tell me how the process is going. march 16th and 21st are the rest of the testing he needs done to be a donor. April 1 (April Fool's Day...is that a good omen?) our case goes to transplant committee to get confirmed that we are good candidates for surgery. The possible surgery dates could be as soon as late April or early May!!!! I am thisclose to getting a new lease on life...let's hope everything works out!!
xo,
R
yeah for you and yeah for me! It looks like we might be having it at the same time!!!!!! :bandance; :bandance; :cheer:
DONORS ARE GREAT!!
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My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.
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My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.
:2thumbsup; Good news!
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My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.
Alright Riki sounds promising!!! Thanks for keeping me updated!
xo,
R
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:cheer: :bandance;
Good news. Holding thumbs :thumbup;
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Mom got the results from her blood work. They said everything looks good except that her blood sugar is a little high. They said that they think that will go down as she loses weight. They told her that she'd have to lose 40lbs. I actually don't see that happening. I've been trying to get her to go to a swim class or go walking for over a year. I think we went out for a walk once last summer. Once this foolish snow goes away, I intend to start walking again. I need to be able to impress my best friend when I go to NY to visit her in the fall. I impressed her last spring by being able to get up off the ground without any assistance.. *LOL* I want to be able to keep up with her. She walks really fast
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hey friends just an update on the living donor situation...
The surgeon told Jeff to lost 15 pounds. So at 12 pounds he called the hospital to let them know and was told "Lost another 12 pounds." So I am sitting just waiting patiently...or at least trying to!!! ha!!
Why don't they tell living donors at the beginning.."hey just go on the diet why you do this process b/c in the end you probably need to lose some weight." Ya know let them get a heads up and get the process going?
Oh well the hoops we must jump through....of course it will be healthier for Jeff and that is important as well!! Want him to be as safe as he can be!!!
xo,
R
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They told Mom before she had any testing done that she'd have to lose 40lbs... she's lost 5 so far, which is a good start, I'd say..
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Jeff has 7 pounds to go!!!!
Rikki glad mom is getting the ball rolling!!!
xo,
R
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HI everybody my living donor has lost all the weight!!! so tomorrow he goes for final testing and to meet another neph. Let us hope that this is the final thing and everything works out!!! Yes if it doesn't work out I will be crushed but I will get through it....
No matter what, I can conquer anything....even dialysis!
FINGERS CROSSED!!! :bow;
xo,
R
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:2thumbsup;
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They're crossed!
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HI everybody my living donor has lost all the weight!!! so tomorrow he goes for final testing and to meet another neph. Let us hope that this is the final thing and everything works out!!!
Give that living donor a pat on the back! That directive to lose weight so frequently seems to be an insurmountable brick wall, but your friend did it for you.
Best of luck rsudock, I hope everything goes your way!
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A text message from my living donor's wife.....
"Nothing but good news today!!! :) Weigth super, blood pressure normal. Will get blood test results for sugar back early next week. He has to wear a blood pressure monitor for 24 hours starting tomorrow. That will be last step of evaluation. She said we will know results early next week and will hopefully start to schedule surgery if test results and blood pressure results are ok. Which they said should be with that much weight loss. We love u! :) We put in a word 4 early summer surgery date. would that work for you? Though it depends on surgeon's availability."
My reply - "Any time is good for me. My schedule is all CLEAR!!!
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Surgery date is June 21st!!! Until I am on the table I won't believe it! Preadmission testing on June 14th.
xo,
R
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OH, good news!!!!
:cheer: :cheer: :cheer:
And happy dance!
:bandance; :bandance; :bandance;
The time will fly by!
Congratulations!
Aleta
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Holy Cow!!!!!!!!!!!!!!!!!!! This is very very very awesome!!!!!! I will be a month behind you, have a date (all the way down in Seattle, I am in Alaska) for Aug 22nd! I am praying for you, be healthy, breathe, take care of yourself. You are leading the way, I am right behind you!!!!!! HUGS!
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Surgery date is June 21st!!! Until I am on the table I won't believe it! Preadmission testing on June 14th.
xo,
R
Wow! :yahoo;
I hope everything moves forward! Best of luck! :cheer:
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Wow! Such great news. :2thumbsup;
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:clap; :grouphug; :flower; Such a nerve wracking time.
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What a fantastic development. Sending you my best wishes!
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Great news!
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Thanks for the love and support! You all mean so much to me!
xo,
R
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:yahoo; AWSOME news!!!!
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GREAT NEWS :clap; :yahoo; :2thumbsup; :bandance;
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:bandance; I'M SO HAPPY FOR YOU!!!!!!!!!!!!!
I wish you the best of luck and a speedy recovery for you both!! :pray; :pray; :pray; :pray;
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Oh, that is just the best news!! I am thrilled for you and can't wait to hear you tell us that surgery went well!
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awesome wishing you al;l the best!!!!! :bandance;
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4 more dialysis sessions!!!! Tuesday is preadmission testing let's hope this final hurdle is conquered!! Aaron told me today, "You know if for some reason the transplant doesn't work out, dialysis isn't the end of your life."
He knows me too well.....
xo,
R
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Good luck! :grouphug; :clap; :bandance; I'm so excited for you!!! :bandance; I hope everything goes really well! :2thumbsup; Please keep us updated! :grouphug;
Edited: fixed smiley error - paris, Moderator
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Wow after reading this 2 weeks after transplant I realize how lucky I am...first I had the most amazing support from my IHD family. Thank you to everyone who followed my story and encouraged me to keep moving forward!
Another thing I have realized is that getting a transplant requires vigilance and determination. You would think finding the donor would be the hardest part but transplant hospitals have a ton of hoops to jump through. I am so grateful to Jeff and his wife Abby for their unwavering courage and commitment through this process. I remember talking to them and saying "the transplant program will try and let you fall through the cracks. They won't call and ask you about how u are doing with weight loss and follow up with the dates of tests. You will constantly have to stay on top of them...and thankfully they did. UH never called me or kept me in the loop. I had to call and leave messages and days later, maybe someone would call me back. It was frustrating to say the least...
Even my friends Des and Riki had some bumps in their transplant journeys as well b/c it is hard to get a transplant. Hospitals are just another hurdle to overcome...why does it have to be this way?
Whether or not I have 2 months, 2 years, or 2 decades of good health...I made it. I fought and won this time, for the time being...
Love to you all,
R
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I don't know why it has to be so hard... my first 2 transplants were so simple.. *L*
Mom had her appointment with the dietitian the other day, and she was told that what she was doing was what she should be doing. We're both going to be doing more swimming, now that it's getting warmer. Hopefully in another week or so, the water will be warm enough. You go in now, and your toes turn blue. *L*
We also looked into a pool membership at one of the hotels in town. Since we both love to swim, it's the perfect way for us to both lose a few pounds
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rsudock - I am so happy for you!!! :laugh: :2thumbsup; :clap;