feeling a little blue today

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feeling a little blue today

Postby amanda in CA » Wed May 05, 2004 5:14 am

My father was tested to see if he would make a suitable donor. Unfortunately I have discovered today that he has the same A2 antigen that both my mother and brother have, which is what I am making antibodies against. Apparently it is a very common antigen in the caucasian population. My antibody level is at 98% so a further cadaveric kidney is highly unlikely unless the elusive perfect match comes up (and I have an unusual antigen which makes it even more elusive). I am considering asking my auntie on my mum's side but my dad only has half brothers and sisters so there is little chance that they would be suitable. It's a little soul-destroying to be 40 (nearly 41!), with a three year old son and to face the likely prospect of dialysis for the rest of my life.

I plan to look further into the possibility of plasmapheresis as a way of getting my antibody level reduced so that a further transplant is possible. I'm just frustrated that the antibody increase possibility wasn't discussed before I was taken off my immuno-suppression, since it only started to rise after that, which, in retrospect, seems entirely logical. Trusting those doctors again too implicitely I guess. anyway, that is my unloading done for the day and now I must go and dialyse. Amanda
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Postby George » Wed May 05, 2004 7:51 am

Chin up Amanda :) , I know it must be very hard for you at this moment, but we all have to live in hope.....
Myself I just started HD yesterday. I am just starting my long journey into the unknown. But I go forward knowing that I have the love and support of my wife and family...My family being my relatives and the wonderful people on this board and in the chat room, thank you all.

Love George xx
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Amanda

Postby Hal » Wed May 05, 2004 9:32 am

Hi Amanda,

Sorry to hear your feeling blue. There obviously very little I can say to change things - but chin up.

New treatments are coming on board all the time - the way I see it is, I may not get a transplant (I have no living donors) and if I do, the disease could recurr (although obviously I hope it won't).... but I work on the basis there gonna sort out all this soon - stem cell transplants or even dialysis you don't have to worry about (a little tiny implant in you). I try and keep positive with this :)

Anyway, talk to me on MSN sometime - I don't see you on there anymore or come to the chat room www.dialyze.org/chat/

Take care,

Hal.
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Chin Up??... are you MAD!!!!!!!!!!!!!

Postby Rik » Wed May 05, 2004 1:53 pm

well there my luv'r ... things not be looking bright over the Cobb today then eh??!!!!
http://www.hotelalexandra.co.uk/4b%20hi ... ulture.htm

hmm?? ....OK Trac'r Girl ... my reckoning is that the next person who tells you 'chin up' is likely to receive the blunt end of a Dorset Knuckle Sandwich on their upward pointing chin!!!!! ... so I step aside to a braver person than I for that one!!!!
(my excuse is I have a severe allergy to pain ... it tends to bring me out in tears!!!)

no point me telling you that lifes crap ... we both know that at times it is ... and the crappier it seems the crappier it gets... and just when we think things cant get any worse ... it does ... just to prove us wrong again!!!!
but then lady ... at times ... the sun shines and we forget all the bad bits ... not for long ... but long enough for us to see that things can get better ...

I know it sounds so condesending... but honest Trac'r Girl .... there is that elusive perfect match out there for you lady :0) ..... people do get them I know that from experience .... and they get them when they are least expecting them ... I hope it does for you too ... pretty damn sharpish would of course be kinda nice!!!! ...

sorry that your family cant be donors ... I know you were hoping for that ... as we all were for you :0(
but now you need to think forward and see what these medical boffins can do about bringing these 'plasma fairies' ... or whatever you call 'em ... so they can be of some sort of use for you and bring that chance for your next transplant that bit sooner...

I really do hope that by the time you read this that your on the up lady ... 'coz with all the help you have given others ... you deserve the best ....
well that or a reconditioned Massey Ferguson I suppose!!!!!!

:0)
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Postby JMan » Wed May 05, 2004 3:31 pm

I hope some of this doesn't sound too harsh.

At least you have some slim chance of transplant. any chance is better than none at all.

And yes, plasmapheresis is an option.. Fight if you have to to get it.. Its is there though.

Yes dialysis is a possibility, but again, its there.. better than it not being an option. Being on dialysis isn't the end of the world (tho it may seem like that)

I agree that it gets harder to trust docs.. I'm finding this as I get older, now on my third transplant after a 9 year stint on haemodialysis.

And like Hal said technology is progressing all the time..

Better drugs and dialysis technologies.. There are many new things under testing as we speak. Lets hope we live to see then end of the need for organ transplants:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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http://www.flickr.com/cybercast
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Postby Anne in Va » Wed May 05, 2004 4:28 pm

Hi Amanda,

I am sorry to learn about your antibody problems. Your high PRA right now is probably caused by your failed kidney and your pregnancy. However PRA levels can and do change. Time may cause them to lower. Your doctor may be able to give you more of an idea of a possible time frame. I have heard that plasmapheris has done a good job of reducing levels for some people. University of Maryland and University of Pittsburgh may give you some more info as I believe both have used it successfully.

Actually, a transplant from a living unrelated donor may be the best for you. Most transplant centers are doing transplants from living donors with a zero antigen match. Seemingly, the only better transplant is a perfect match. So one of your Fathers' half siblings or a friend, might just be the match you need.

I feel for you just now and fully understand your concern over raising your child. Sometimes life stinks so take time to grieve without feeling guilty. You have earned the right.

Love, Anne
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Blue lady

Postby Art from Ontario » Wed May 05, 2004 4:32 pm

Dear Amanda:

Chin up -- here in Ontario plasmapheresis treatment is being used for successive transplant recipients .

One 28yr old fellow in my dialysis unit lost his mother's kidney shortly
after tansplant.

He was on dialysis for 1 year and then took the treatment
to 'wash the antibodies from his blood' in the 1 & 2 weeks prior to receiving his cousin's wife's (not blood relative) kidney.

He is doing great now.

You are not at all ruled out for transplant.

....cheers.Art
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Oh Amanda

Postby nycpetit » Wed May 05, 2004 9:41 pm

You are not alone...like Art said they are doing plasmapherisis now..and in boston they also done bone marrow transplants first and then the transplant to match...in those cases of course the recovery is longer (the latter) but those people don't even usually have to take anti-rejection meds....

as for asking other people...yes, you must..I am going through the same.the other half of my family I don't even know..my parent's never married and now I have needed to contact them for the first time in 34 years...my dad had never told them I existed

needless to say...they aren't really coming forward...
i do know how hard it is

big hugs

technology and advances are on our side...dialysis for life seems way too soon to settle for at this point

Natalie
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All is not lost

Postby Dionne » Wed May 05, 2004 9:50 pm

Amanda,

There is hope!!! I am 9 weeks post transplant and doing well. I had a living non-related donor who was considered to be an incompaible match due to anigens, although we share the same blood type. I also have SLE, which complicates things regarding antibodies as well. My transplant team is pretty agressive and innovative using new therapies, and suggested plasmapheresis before and after the surgery. I had three treatments before, three after and bi-weekly for two months have also had Cytogam and Xenopac (anti-rejection meds.) in an I.V. form.

The bottom line is that I feel well and that my creatinine is 1.1; lower than it's been a in a long while! My transplant center is Thomas Jefferson Hosp. in Phila., PA - a long way from Cali! But, they have a website with info on the different transplant programs available. (see link below)

I wish you luck. Please keep us posted and let us know how you make out. Like others have said, they are always coming up with newer and brighter things regarding technology. Take care.

Dionne

http://www.jeffersonhospital.org//trans ... urki=16639
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A whiter shade of pale blue

Postby amanda in CA » Thu May 06, 2004 2:22 am

Hi, Rik is right. There is always something that comes along to make life brighter. Today was one of those days. We had a mother's day celebration at his pre-school and I thought that it was just tea and cookies because that was what it said. When we got there I had to drop Blake into his classroom and then go to the assembly room to wait for them. It was all laid out nicely with flowers on the tables and at each setting, a place mat with our child's handprints on and a little verse which had been laminated so that it looked really nice.

Then the little ones came in, got up on the stage and sang a little song that they had practised. then they came off the stage and each child presented their mom with a carnation. I wasn't the only one that had tears in my eyes! It is definately those little moments that makes life precious. Many thanks for everyone's kind thoughts. Amanda
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Postby Anne in Va » Thu May 06, 2004 3:10 am

Hi Amanda,

How wonderful you should receive a boost and a blessing just when you needed it! There is nothing more precious than the joy a little one brings.

Love, Anne
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Postby Rik » Thu May 06, 2004 8:15 am

:D :D :D :D 8)
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Hi!

Postby Nikki » Thu May 06, 2004 11:03 am

Hi Amanda, you answered my pregnancy question, thanks, I've just posted you a PM and then found this post and saw how down you are :cry:
Apparently the reason my kidneys failed was cause of an antibody in my blood but they couldnt really explain much about it to me. I couldnt be put on the transplant list for a couple of yrs but whilst i was on capd the antibody got washed away and then my dad donated.
I would say try your aunty, try anyone thats willing to do live donation, people over here do husband to wife translants and friend to friend ones too so its worth a try! :)
I know how down you can get, I get like it all the time but i use my love of dancing and doing shows to keep me happy and keep my mind off all the crap life throws at you. You have your son and although it must be seriously draining to look after him while dialysing, you have to be strong for him.
Anyway, Keep posting us all, theres nothing better than talking to people who understand, take care and keep looking for that donor!
Lotsa love Nikki. xx :wink:
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Postby johnsor » Fri May 07, 2004 6:18 pm

Amanda:
I do think of your situation quite a bit because this antibody/antigen problem you describe was almost an issue for me and I had never given it any consideration before. I do not understand the issues behind your problem, but was wondering if the Johns Hopkins tx site that "advertises" they can "cleanse" antibodies from kidneys to make them adaptable to potential receipients to whom they were previously not compatible had anything to do with your situation? I suspect your situation is entirely different, but was wondering "out loud". Hope you get over the top on this show stopper.
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Postby Vanessa » Fri May 07, 2004 7:22 pm

Hi Amanda,

You have replied to a few of my messages in the past so I really wanted to post you back.

I was pleased to read your message about Blake, it sounded wonderful. As a new mum to twin boys Thomas & Oliver (11months) I felt tearful just reading it!

Life can seem so unfare at times & so many poeple don't seem to appreciate what they have...their health!

I know that I will be living with Kidney failure for the rest of my life, but now I have been blessed with my boys, nothing will be the same again for me and they are all the reason I need to keep going...even on those really hard days.

Get pleasures from your little boy...the smile on his face when he see's you in the morning, the unquestionable LOVE he has for you, his mum, and in every new thing he is experiencing & learning.

Take care Amanda,

Vanessa. UK
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