Set Back

[vandie]

My donor was set to get her work up completed when I found out that my PRA levels are back up to 50%, so no go on the transplant until they are back down. 
I did my 7th IVIg treatment last week, crammed it into one 10-hour day because I'm running low on sick leave and vacation at work.   I did all right, no blown veins, BP stayed stable through most of the infusion.  However, the first nurse could not get a vein.  She had to call in reinforcements.  Took an extra hour and a half before we were able to get a good vein.     
I was told I have to do the treatments until I transplant to keep the levels low.  What I wasn't told is that, even with the infusions, the levels can go back up.  Seems there are surprises around every corner.  And I thought I had done my research!!
So I follow the same course I have been, infusions once a month in the hope that counts will go down far enough to transplant. 
If they don't come down on a few months, I do plasmapheresis.     
My donor is so patient.  What a pain in the ass to go through all this work up to wait, wait, wait.

[okarol]

Aww that's very frustrating Vandie. I hope things improve
and you get back on track for the transplant soon!
Best wishes,
Karol

[Epoman]

Aww that's very frustrating Vandie. I hope things improve
and you get back on track for the transplant soon!
Best wishes,
Karol

Your thread will be very difficult for some users to read on their monitors using the "glow" tag, I have a Dell 20" Ultrabrite Digital and it is difficult to read, please keep the colors to a minimum. Let's not get to crazy on the colors. ok? 

[okarol]

Sorry Vandie.

[Epoman]

Picky picky picky.
I didn't see any difference at all on my
mac so I didn't think it did anything.
I think I fixed it.

Yes, indeed I am okarol, I put in many hours a day into this site and it is very personal to me. I devote a large part of my life into this site, in the last 14 months of this sites history I have put literally hundreds and hundreds of hours making it what it is today. So yes, I am very picky, and that is why this is the biggest dialysis message board on the Internet.

Imagine this for a moment, what if every member used a different color, size and so forth and got real creative with their posts, we would have a circus of colors and the site would look less professional and more importantly less credible. Currently I do not have a restriction on "colors" but if it gets out of hand I will have no choice but to disable HTML/BBC codes in the threads.

Lets stick to regular "black" for most of your posts and just use colors for special posts. For the mean time I have disabled the following 4 BBC codes for ALL members. I should have done it sooner.

"Glow", "Shadow", "Marquee", and "Font Type"



Thank you for fixing your post.

- Epoman
Owner/Admin

[Joe Paul]

Sorry to hear about the setback. Hope the infusions do their job and FAST.

[paris]

Vandie, sorry to hear that the antibodies have gone back up.  My surgeon feels plasmapheresis is the best way to get rid of the antibodies in conjuction with the IVIG infusions. Now have my medical records at two centers that do plasmapheresis, so hopefull will be accepted at one of them.  The antibodies are a huge problem and something you don't hear much about until they tell you that your PRA is too high.  Hoping your infusions will bring the numbers back down for you.

[Sara]

Sorry to hear that, that must be so frustrating.   

[Rerun]

Vandie, I know it is a pain in the A** but the last thing you want is a rejected kidney.  Wait until the timing is right.  It will be worth it.  I'm glad your donor is willing to wait.  My PRA is 95 last time it was checked and I don't have a donor.  I don't even know why they list me....there is not hope. 

But, having said that, I had one for 17 years, so I feel blessed.

[Jill D.]

Hang in there Vandie! I leave for Mayo Clinic on Nov. 19 to start having my work done on my blood for my Dec. 5 transplant! My antibody count is very high, and they will be doing plasmapheresis and some other things (maybe IVIg - does that have to do with the white blood cells produced by your bone marrow?) Anyway, I will try and keep updates on this site. Hopefully I can help others that are dealing with positive crossmatch issues by getting my experience out there!

[Black]

Vandie, Glad your donor is hanging in there and hope it all goes well.

[mallory]

Vandie, Sorry to hear about the setback, I hope everything works out.  You're in our thoughts...

[Epoman]

Don't worry Vandie, I believe everything happens for a reason. It just wasn't your time right now, but your time will come. I just hope after you get your transplant you won't forget about us. 

[vandie]

Thank you, everyone.  I love this group!!

To Epoman:  This board is UNFORGETTABLE!!
 

[Ohio Buckeye]

I am sorry.
Wishing you the best......

[goofynina]

Don't worry Vandie, I believe everything happens for a reason. It just wasn't your time right now, but your time will come. I just hope after you get your transplant you won't forget about us. 

As much as i hate to admit it, Epoman is right, (ugh, the thought of that kills me) lol   but everything does happen for a reason and take it as a blessing in disguise.  Dont be discouraged, you have us all behind you and beside you all the way 

[Joe Paul]

Don't worry Vandie, I believe everything happens for a reason. It just wasn't your time right now, but your time will come. I just hope after you get your transplant you won't forget about us. 

Hmmm, Epoman, this is very good advice.

[DeLana]

Sorry to hear that, I hope you will be able to get your transplant soon.

Best of luck,

DeLana