I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Des on June 19, 2009, 01:19:39 AM
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Hi,
A friend from work had a crossmathcing test done on Wed 17 Jun to see if she is a match for me.
We just heard that she is!!!
THIS IS SO EXCITING.!
I have never felt excited and scared at the same time.
I will see the surgeon on Mon 21 Jun and I know that he is going to arrange for my very enlarged kidneys to be removed and for me to go on dialysis until the transplant.
My donor must still have more tests done to see if she is healthy enough for the op ...... I just can't help being so optimistic.
I will be chatting about this a lot because it can take about 6 months before it actually happens.
I will keep you posted.
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:yahoo; Des. We will keep our fingers and toes crossed. Keep us posted. :cuddle;
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Hi, Des,
Waiting for a transplant can be a roller coaster ride. I will keep my fingers crossed for you. :cheer:
Aleta
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Yep,
I know by reading other posts that this can by a rollercoaster ride.
I already have a hickup..... I must go for a 24h urine test to see exactly where my function is.... we don't want to be too hasty... and remove some fairly healthy kidneys.
I am hoping that it's still good enough....
thanks
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It may be a roller coaster ride but at least you know you are not forgotten.
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Yep,
That is a good thing ......
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Aletta,
I see your hubby has PKD.
At what age did he start showing symptoms of his PKD?
Does anyone in his family have it?
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:bandance; Best Wishes!
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:thumbup; :thumbup; Good luck!
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I'm so happy for you . :flower;
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Waiting on pins and needles (and eating popcorn) to hear the results! :popcorn; I wish you nothing but the best of news! :thumbup;
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Wishing you all the best. :grouphug;
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Wishing you good luck when you see the surgeon tomorrow
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Not so good news.
The surgeon confirmed that they have to remove both my PKD kidneys before they do a transplant ( at least 6 weeks before the actual transplant)
However this is not going to happen now.... only when my GFR drops to 15 or below (stage 5) I am now stage 4
I must get much sicker .....
I hate waiting for anything.....
I am both happy and sad about this news.... I just want to get it over with.. now I am sort of wishing that my function drops .. but not really.
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Thanks all for the well wishes.....
It is so difficult....
I know it is good news?
what do you guys/gals think... Am I just being negative?
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Good news....
The doc phoned me on Friday.... this is it... the transplant is now closer than ever. My donor are going to have the workup tests done in the next three weeks.
My doc says it is best to have mine removed as they are making me very ill.
I will keep you posted.
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Good luck, I hope everything goes well for you :thumbup;
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Thanks....
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Thinking of you. :flower;
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I am hoping everything works out the way you would like it to.
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Thanks but I think riding this roller coaster is going to kill me before the kidneys do....
The waiting and wondering... the what ifs...?
I wish I can stop and not think just for a day.....
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Try and get your mind off of it for a while. I know it isn't wasy.. Sorry. :cuddle;
I did get to this late so YEY!!! Is needed too. ;)
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You are right.....
YEAH!
I am taking a week's leave 13-17 July...... I am going to switch off.... (well, I am going to try)
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Oh, oh, oh I'm so exited for you. Yes it's a roller coaster, and you must be so frantic about it, but just THINK how great it will be. Well done to your donor. What an amazing person.
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Just an update..
I am seeing the doc tomorrow to finalize the PLAN.
When, what, where and a lot of other questions I listed.
I will find out tomorrow if I will have both of mine out 6 weeks prior to putting the new one in . or at the same time?
I will find out if I will get a fistula soon (to do the dialysis for the 6 weeks)
I will have a date/month of when this is going to take place.
I will find out when my donor (also named Desray) have her tests done. (and schedule her appointment)
I will also find out which of my tests needs to be repeated and when to do so....
I will keep you posted....
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I have just been to the doc.
The plan is .........
I will only have my left kidney removed the same time that I get a transplant. (not both yeah!)
My donor is starting her health clearance tests in the next day or two.
Once we have the results a doctors meeting "around the round table" will take place to discuss my case (again)
The coordinator will combine all our info/results and submit an application to the health department in our very efficient government (sarcastic) Then we wait for them to approve the non-relative transplant.
If and when we receive this golden ticket we can schedule the event. (hopefully before we both die of old age)
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Great news, Des! :yahoo;
I hope it does not take too long.
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Sometimes the ball rolls slowly.
But im glad to hear your ball is rolling and in a positive direction.
Hoping all works out for you Des. :thumbup;
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Thanks guys....
I forgot to add
I AM SO HAPPY NOT TO HAVE BOTH REMOVED !!!!!!!!!
It is a big weight of my shoulders..
:) :)
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:thumbup; good luck Des, keep us posted won't you. Hope the ball begins to roll a little quicker for you now.
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Thats good news des!!!!
for interests sake, here in Cape Town (South Africa) it took me a little over 6 months to get my transplant finalized once all the test had been done on my sister. and that was a live related donor.
All the best.
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Thanks all.
Draven..... I am hoping to schedule the whole thing for Jan... I just want to get it over with.
Its so cool that your sister donated. I don't have fam. I just hope all the donor's test come out ok.
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:yahoo; Hope it all works out well, we will all be thinking of you.
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:cheer: Great News Des
I didn't make it to the removal, strange how things happen. My hospital will not do the removal at the same time as the Transplant.
That will mean you do not have to do any dialysis. :bandance;
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Thanks wattle.
It is SO cool that you got yours!!!
The doc's are meeting on the 3 Aug to discuss my "case" I know they are going to change their minds at least another 4 times.... heheheh... I will wait and see.
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Just an update on this EPIC tale.
My donor had preliminary blood tests done - and it is all smooth sailing so far. !!!!! Yeah
I need to get the angiogram first before they will send her for the next set of tests.... scans, sonar ect.
My medical aid paid for all her cost so far except the very first crossmatching. (very good news)
The meeting of the 3rd Aug could not take place .. because I ended up in ICU with the SVT (as you all know by now) Just another bump in the road.
to be continued.....
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I keep hoping everything will be a big GO! :clap; :clap;
:grouphug; :grouphug; :grouphug;
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Angiogram is booked for Friday 4 Sept.
Doc said the contrast will cause some kidney damage. He said it is inevitalbe but he will use far less of it than he would in "normal" Angiogram. Lets hope.
......tbc
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Why are you having an angiogram?
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Hi,
All went well...... I NEVER want to do that again.
The doc found nothing wrong so ... the transplant is a go.
Okarol, I had to have it because a month ago I was in ICU because my bottom half of the heart stopped and the top half went at a pulse of 220. So... before they could continue with the transplant workup they had to make sure that there are nothing seriously wrong with it.
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Hi,
All went well...... I NEVER want to do that again.
The doc found nothing wrong so ... the transplant is a go.
Great news!
:yahoo;
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:cheer: :cheer: :cheer: :cheer:
Great news!
Doin' the happy dance.
:bandance; :bandance; :bandance;
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Okay Des,
When the transplant happens have you planned how we are going to be kept informed? Do you have a family/friend who can post here? Does okarol have your emergency contact information? The waiting to hear how are members are doing can be excruciating.
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Thanks YLGuy. H
He's right Des. As you have seen we like to follow and support our members!
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Yep,
Okarol has hubby's email adress --- she can communicate with him... :)
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:2thumbsup; :2thumbsup; :2thumbsup;
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Then let's get on with it! :clap; :clap; :clap;
:cheer: :cheer: :cheer:
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:clap; Great news Des :cuddle;
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Belinda, the transplant coordinator has just phoned me......
The panel sat and the surgeon and the nephrologist both agreed that I have to have the left kidney out.
They know that this will most probably push me to start D.
So.... I have to make an appointment to see the neph again.... I think I will get a fistula first (just in case)
I really only want this done in Jan. I want to go on leave (camping) (for old times sake) with the family in December. (before D starts and all....)
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:grouphug; :grouphug; :grouphug;
Thinking of you, Des.
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Thanks wtw.......
talk is cheap,,,, Now it is a reality.
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Surrounding you with good wishes :grouphug;
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Thanks Paris,
I am chicken as hell!
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I am SO tired.!!!!!
You will never believe this or maybe you will.
The neph just phoned me 5 min ago and "we looked at your file and we decided not to remove the kidney in Jan anymore" aaahahhhhhaaaaaaa!! I wish they will just make up their @#$&^%^ minds already.
He now thinks that I will go a few years before that happens. Did my kidneys improve or shrunk? Why did he insist that I find a donor soon? Why did he send me to the surgeon to get checked out? Why did the transplant coordinator tell me that I need to get the kidney removed for me to remain on the list? I like that idea of not having it removed, but can they PLEASE let me off this rollercoaster ride. I don't want to ride anymore. I am starting to think I am their money making machine or something.
I am happy but worried..... how is this going to affect my place on the transplant list? I don't think my live donor is going to stick around for that long.
The constant pain will now be with me for a long time I suppose. Well he said that even if I remove the one I will still have pain from the remaining one.
to be continued......
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Umm so I am a little confused (as I guess you are!)
What did the neph say when you reminded him that this is causing you pain which you don't need, and that the transplant team want you to get that old kidney removed to stay on the list - which you DO need?!?! If you have the live donor lined up they should be supporting that action IMHO as we all know that live scheduled donations are better for all concerned and I think a pre-emptive transplant would also be prefered.....
????
Did s/he offer a reason for why they now don't want to take it out?
I'd definitely want a reasonable explanation given the pain and transplant issue....
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Thanks RM,
It is so frustrating... I understand why they rather want me to keep it in. If they remove it I will start D and he wants to prevent that at all cost. I get that and that is quit admirable but he must decide and stick to his decision. It drives me crazy...
I spoke to the transplant coordinator and she will discuss it at the next meeting. I am still on the list but was not listed as urgent. (which is a good thing because its not urgent yet, but it will be if they remove the kidney)
Pain is a constant... the level just varies but is is never zero. I suppose if you learn to live with it ... it is still better than D. I don't know. Damn if you do damn if you don't.
Thanks for caring. :)
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Oh Des, I am sorry for all you are going through. It is quite an up and down ride for you. None of this is easy, is it? I'll keep thinking good wishes and hope someone gets this all figured out for you. :cuddle;
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It is now official... I am having the left kidney removed in Jan and will have a transplant 6 weeks after that.
The ball is now in motion.... My donor was phoned and she will complete her final workup and we will send in the application to the government and (if God willing) I will have a transplant end Feb or beginning March. I am glad the two docs could come to some agreement on my treatment because it was just rediculous.!(spelling sorry) I am going to get dialysis for the 6 weeks after my left nephrectomy.
I will keep you posted.
(Thanks Paris,Richardmel and WTW you are the best)
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Oh, Des. I'm so glad you now KNOW what is happening.
Waiting is not so hard when you are waiting for something specific!
Hmm. The best pain in the a**???
Ha ha ha.
Love you, Des.
Aleta
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Great news that you have a plan in place, and communication between doctors.
I'll be hoping that everything goes smoothly for you on the bureacratic side. February/March is right around the corner. This sounds like it is really coming together for you! Congratulations!
Good luck, Des. Hopefully you can enjoy your holidays knowing that the real excitement begins in 2010.
Best wishes! (Smilies not working for me - flowers and hugs to you!)
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Oh oh oh how exciting!
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Thanks all .... I just pray and hope it goes well...... more than well. Just perfect.....
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Great News!!!
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:2thumbsup; :grouphug; :2thumbsup;
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Hugs and Best Wishes Des. Hope it all goes smoothly for you. I can hardly wait. Just imagine how you must feel!!!!