Happy Birthday, Im on the list

[girliekick]

 

I haven't been here in a few months. (no internet at home)  My birthday was the 3rd and I got a call form my transplant team. So my time on the list starts on my 27th birthday. I am really happy, infact I when I first heard, I dont know if I had ever been that happy before. I have three ppl who have started the process for being worked up. And reality has set in. ---- a new set of problems ----- (which I am happy to have.)

I also got the diagnosis of Lupus last week, and they concluded that is the cause of my CKD. I was once told that lupus would make transplant "tricky" but not impossible. So now that I am a candidate I am really wondering what the medical jargon "tricky" means.

I was also told by a potential donor that before the surg the donor would have to be put on immunosupressive drugs. That makes since as far as my receiving the kidney, but it seems extra dangerous for some one to go into surg. Any feed back is great.

I am trying to learn more, many ppl tell me I should just accept whatever news is handed to me. But I feel I have to understand it.


 
girl

[monrein]

You are right that you do have to understand things you're told and that means asking things as often as necessary until things are clear to you.  I've never heard of a donor being put on immunosuppressive drugs and as a recipient, the drugs start intravenously right after surgery.
Glad you're listed and ask ask ask until you know exactly what they mean by "tricky".

[kellyt]

    Congratulations!

[Romona]

 

[girliekick]

  Thanks
girl

[girliekick]

more good news!!!
 

The first two of my LD to get tested are both 4 of 6 matches. And as best as I can understand it, I do not have antibodies to either of them. Now we have to decide who goes for the rest of testing, and whoever goes, if they pass will be my donor.   It is all so surreal.  They are both willing to go, and I would just let them decide if they were having reservations about it. but seeing as they dont , and I am in what i perceive as an unusual position. I can sort of choose a kidney.   I am so grateful.

I called my coordinator and she gave me some new things to think about. of course she contradicted what i was thinking. All in all it seems every pro and con is equally matched on each side. I think logically it would be best for me to make the choice based on the amount of antibodies I would be taking on, as I am 27 and am likely to go through this process again.

I am just being cautious and analytical, I would very much like to know what fellow IHD members think. Would be ever so tickled to hear from anyone who has had a similar experience.


thanks Girl

[kellyt]

My donor wasn't placed on any medications accept pain medications after surgery.  Oh yeah, and the two miserable enemas before surgery.  ha ha

My immunosuppressants started the night before surgery.  I was given my Prograf and Cellcept.

[rookiegirl]

Congratulations! I wish you the best.

[girliekick]

just giving an update.... I have chosen to use my cousin (24) as opposed to my aunt,  as i feel i will need my aunt as a caregiver and helper during the upcoming months.

My cuz has past all her testing except her pap. (fingers crossed) i really do fear  the 'transplant  rollarcoaster' and having only been on the list for 10 weeks and everything going so smoothly since.... I just fear the let down.  i experienced so many in the 1st 8 mo of D.  and at the same time i am so close and so much closer to transplant i  can smell it. And i feel as if i have to keep my hope in check.
Any way we are close to setting a date. We are fundraising at NFT and started a carepages blog.

I always heard stories that went smoothly, i just never thought it could be me. 

Prepare for the worst, hope for the best.

Pls keep us n ur thoughts and our MOJO workin'

girl

[okarol]

  I hope thing progress smoothly! Please PM me or post your caringbridge page. I would love to follow your story.
 

[girliekick]

i have perotinitis.

[okarol]

i have perotinitis.

Oh no! 

[Hanify]

Dammit!  Get those antibiotics into you Girl.

[girliekick]

I was in the hospital for a week, they sent me home on vancomicine. I do it in my solution two extra midday a week. So that is not bad. I am worried though. The source of the infection came from my exit site. I have had a staff infection for at least half a yr. I had it cauterized about two months ago. The outside looks pretty healthy now, but it burst on the inside causing the peritonitis.  I am worried it will be difficult to treat, considering we have yet to get rid of it when it was just in the exit site. We will see. Doing cultures every week, and waiting. I let the transplant clinic know. I just pray I dont have to go through any hemo. It was so rough for me. I really am scared.

My cousin finished her testing, but received a letter saying they want her to redo her 24hr urine test. Hope that turns out to be nothing major.

Much love
Gril

[tubes]

Girl - Im excited and happy for you that you made it on the list. I havent had any family start their workup yet. Soon I hope.

That really sux what you're going throu. I hope everything gets cleared up soon and you can continue your journey to transplant day.

Keeping you and your cousin in my thoughts.

Best wishes,
Robert

[Mimi]

Sorry to hear you are having problems.  Pray it gets cleared up soon and the transplant goes on smoothly.

[girliekick]

thx for the support u guys, monday i go back to the doc, and would love some good news. Im having the typical lady problem that comes along w antibiotics. So i am ready to be off them. Two more wks. I am also really scared of getting cdiff from being on lots of antibiotics.

Thanks tubes, robert for telling me to stay up then completely zonking on us. We all signed off at 4 central standard time. Do u want me to have a chat w ur family, cause not only would they just love it, but im sure  i can be effective, and prob get them to get u something really cool for xmas. Still praying for u
girl

[girliekick]

the reason my cousin is having to have her 24 hr urinalyss redone is there was blood in it last time. The tx team doesn't seem worried as they think it was linked to her cycle. She also has to do more blood work, bc they said it was contaminated.... We'll see. AND they are sending her an order to get an ultra sound of her ovaries as they think she may have a cyst. As of yet i know very little about ovarian cyst. i do know that if they think it could spread that will rule her out for tx. I dont like how the odds have changed. And there is a part of me that feels guilty. I dont want some one i care for to find out they are sick bc they wanted to help me.
I haven't told any one yet, cause i dont want it to get around to her parents before she is ready to talk to them. And that might be when she gets the ultra sound results back.  then what?
AND.....

My infection didn't go any where. The started me back on vanc, i go see the neph on the 13th, so we will see what happens from here. I hope they allow me to keep my apt the following day to have my w teeth removed.

Ps
'they' didn't give me any foodstamps this month. Dont know why. Of course i found out when i had already checked out a cart full of groceries.

To bumed out for the beginning of the year.

Girl

[jbeany]

Better that your cousin finds out about a problem before she had symptoms.  Disappointing if it keeps her from donating, but don't feel guilty about her getting bad news - she would have found it out the hard way otherwise.

I'm paranoid about the food stamp thing now, too.  I tend to run thru the checkout with something small so I can see my totals before I get the cart load.  They keep changing my amount on me, so I never know if I have a lot or a little.

[girliekick]

thanks j
got a call from tx team today. I am now listed as inactive.  my cousin does have a cyst, but they have not ordered any follow up test so im trying to keep from thinking about it too much.  got all my w teeth taken out, as far as surg go its not so bad. However they had to cut out part of the bone to get one out... That means 6-8 wk healing time. They cant me to take ibuprofin but i cant bc i still have residual k function. Cant take steroids for inflammation bc i have an infection. So i am using a combo of perocet & phenagrin and heat & ice.
Thats just my update.
Girl

[RichardMEL]

comment: have they talked to your cuz about any plans to have children? She's 24 I think you wrote, so they may well have concerns with her donating at this stage in life in terms of future pregnancies. It was a bit of a sticking point for my sister when she was tested (at the age of 39 mind you) - the suggestion was that if she had any plans to have a kid they wouldn't want to take a kidney from her. The rules over there may be different about that.

Good luck with getting back active on that list ASAP!!!!

[girliekick]

Idk how they deal w cyst, but i have had kindof a weird feeling, and haven't heard much from my cuz, But i really thank u for bringing up that point.

[girliekick]

had my pd cath removed monday, and a perma cath placed. Im scheduled to start hemo on thursday.    the surgery was crummy,   4 days wo ddialysis  is sure to be unpleaseant.  so hopefully this speeds up the tx process.  and maybe i will do better on hemo than i did last time.
Girl

[monrein]

Every change of routine is just one more thing to have to adjust to, gk, but I do hope that your clearances will improve, that you feel better and that hemo behaves for you this time around.

[okarol]

  Hope all goes well!